Miracles for Eric
The Sacred Journey Back From Traumatic Brain Injury
The Beginning….September 26, 1999 5:45 p.m.
The ringing of my cell phone wakens me abruptly from a rare nap. I hear my 16-year-old son, Joe, in a noticeably controlled, strangely mature tone, saying, “Mom, something terrible has happened. Eric was in a serious car accident; he’s being medivaced to a Trauma Center. Here’s the number you must call….
I always thought that if something happened to my children I would sense it. I would just know it. But I was asleep! Was it so I wouldn’t feel his pain? So I could have strength for what was to come? I believed things like that. As an ICU nurse II would often tell family members, if their loved one died, say, soon after they left the hospital, that he/she wanted it that way, to spare them. Or when a patient was dying, but held on till the last child arrived from wherever, and passed on with everyone present, that was her wish. Was I being protected in sleep?
Earlier that same day
Earlier it had been a beautiful, sunny, breezy, picture perfect fall day. My, then, boyfriend Bill and I had gone to an outside open house at Helga’s Healing Center. I met Helga in 1993 at a Healing Arts class she taught through our local community college and learned about herbs, gems, charkas and ultimately aromatherapy! I opened my Aromatherapy shop in 1994 and she was one of my cherished mentors. There was healthy vegetarian vegetable soup, Native American drums, jewelry and artwork on display, mini lectures, Robert the tarot reader, and more.
I did sit with Robert. Rarely do I ever visit any Tarot readers. Years ago one predicted something unpleasant. Perhaps I didn’t interpret it correctly, but by trying to avoid it, I missed a few good opportunities and then it happened anyway. So I never ask about the future. Robert and I just talked about my Aromatherapy business. I ended up very lightheartedly drawing five cards, but forgot to tell him I only want to understand the present! Not future prediction. Robert turns towards Bill, who was about 20 feet away and says, “He’s going to stay with you at least through next year. He’s going to be a great support to you. I see you very sad, but you are going to be strong. In fact that it was people are going to admire about you. I hear them saying “She is so strong”. I was unnerved. “I have always supposedly been strong. I am glad to be strong, but I don’t want to have to be strong”. I thought to myself.
Eric had been in some trouble in April that had not yet been resolved. I thought, “Oh, my God”, it must be so worse than I thought. Despite that unexpected unpleasant reading, Bill and I had an overall fun time. That was 4:30 p.m. When we got back to his place, he was going to cook. I suddenly got so tired; I was literally overcome with the desire to sleep. I asked him if I could go in his room, where I remained collapsed, until my cell phone rang.
Getting to the Hospital
The number to call was Tom Ebling’s, Jackie’s Dad. “I’m going to the hospital to be with Eric, do you want me to come get you?” He asked. I was relieved not to have to drive.
“Call Brandywine Trauma Center in Coatesville and get directions; Eric should be almost there by now”
Jackie was Eric’s friend of three years, girlfriend of 12 days, and driver of the car. They had been at a Christening where they were godparents to Clint & Kathy’s baby, and then were at Jackie’s house for a while. Jackie was on her way to cheerleading practice and was going to drop Eric off on the way. He said he wanted to take a nap. Those were Eric’s words then there was the crash. Tom heard it. He went to the scene. It was bad. Jackie appeared to be physically OK, but was taken to Reading Hospital. Her mom would follow over there. Tom would go to be with Eric.
I ran down the stairs at Bill’s while dressing, trying to put my shoes on and yelling, “We have to go now, Eric was in an accident.” While Bill drove me to the short distance to my house to meet Tom, I prayed loudly; over and over “Please God, let Eric live till the hospital.” Bill was helplessly silent.
When I called Brandywine I got put right through to the ER Nurse, she told me not to leave for the hospital yet, because they were not sure if it was really Eric. There was no wallet or ID with his belongings. She asked me to describe Eric. I told her “He’s 6 ft 2, has thick curly brown hair, big brown eyes, long eyelashes” only to hear complete silence on the other end. Then I screamed, “Oh my God, isn’t he recognizable?”
I couldn’t think of any identifying marks; finally I said, “He’ has a relatively hairy butt,” and then I screamed louder, ‘He’s not circumcised”. As if that was the definitive identifying feature. She said she would call me back. She never called, but I knew it was Eric.
When Tom picked me up in his truck he said “I love Eric like he’s my own son. He’s going to make it!”. I had never met Jackie’s parents. I had spoken to them briefly when I called for Eric. Tom had a graying full beard, wild hair and a deep throaty voice. He seemed like a very caring man’s man.
The hospital was almost an hour away and the directions confusing. We followed numbered routes through windy country roads. One of the routes actually lead behind an alley. At first we thought we were lost. Our moods during the ride ranged from quiet, tearful, pensive, sobbing, and sharing.
Tom said, “Eric spends a lot of time at our house. He’s a great kid. Hard worker, he’ll do anything you ask” He had been working for the Eblings He’s the best guy Jackie ever brought home.We’ve had heart to heart talks. He often told me things about his father and how hard things were. One thing for sure, Eric really loves you.”
Seeing Eric in the Emergency Room
We were greeted in the ER by Mary Alice. She was an RN assigned to prepare me to see Eric. She knew I was a nurse. I don’t know how. I generally don’t let people to know I’m an ICU Nurse right away, because they treat you differently and that is not always good. They may even hide things. She told us he was on a ventilator, had been put into a chemically induced coma, and that there was a great deal of facial swelling.
When I see Eric, I start to fall backwards and Tom catches me, I guess I almost fainted. I had not fainted in 21 years, not since nursing school. The first time was while watching a pregnant 16 year-old getting an amniocentesis. The needle was so long, and she looked so scared, that I fainted to the floor. It was bad verbal press for RACC’s new Associate Degree RN program. “The RACC student fainted.” I was with a group of 3-year diploma nursing students and their instructor, who very kindly got me orange juice. The next time was in the kidney dialysis unit. As I saw the patients’ blood circulating in these wash tub like machines, I asked myself, “Is all the blood from their entire body in there???” and fainted.
A much older experienced ICU nurse now, I had seen ugly, sad, scary and no longer fainted.
There was a beautiful young woman with a rare collagen disease, who arrested in our ICU, When we started cardiac compressions she began hemorrhaging from all orifices. Blood dripped over her face onto her blond hair. That was sad, very sad and ugly. My heart ached, but I didn’t faint.
When I saw my beloved Eric, my heart ached with pain and sorrow I cannot describe. Take the largest, most purple plums you have ever seen in your life and imagine placing them over your eye sockets. Then picture something overflowing out of the bottoms of the plums that look just like the skin that hangs down under a chicken’s neck. That was his conjunctiva. Eric’s was inside out. No wonder there had been dead silence when I described his brown eyes and long eyelashes to the ER nurse. .
At this point Eric’s dad arrives. He comes over to comfort me and says, “Eric will get everything he needs because we have the best insurance.” We had no idea that that was the furthest thing from the truth.
Creating the Optimist Zone
The Prognosis from the Social Worker
The next day the social worker, Jessica, wanted to have a meeting with me. Jessica said it was part of her job to do reality orientation, and that Dr. Lee instructed her to speak to me about the seriousness of Eric’s condition and that I needed to consider his prognosis. Jessica was in her early twenties, about five foot five, with long, thick, coarse and wavy blonde hair, slightly stocky with a pleasant, somewhat broad face... She actually began by saying, “It is important that you realize your Eric is not coming back to you. The son you knew will be completely different. He’s probably going to be blind, at least the right eye. He’ll probably never walk, or talk. He may not even know you.”
At this point, shocked while holding back tears, I said, “I’m sorry but I don’t want to have this conversation.” She continued and I politely restated, “I am not interested in this discussion.” She interrupted and repeated, “You need to realize that your Eric is not coming back to you”.
By now, I’m really crying, and saying, ”Please stop, I don’t want to listen.” She kept talking until the point where I stood up and started shouting, “I’m not interested in your reality! God is the only one who knows what’s going to happen.” I still heard her voice,
“You have to start thinking about his prognosis and the future….” and I screamed, “You have to shut the fuck up! I am not listening to one more word you have to say. I am not wasting any of my energy, my thoughts or my brain cells on your version of reality. I want my version. I am not going to think about what could be wrong. I don’t want to hear any more bad news. Eric is going to live! Eric is going to make a full recovery! I expect a miracle.” And louder yet, I said, “I expect everyone around him to believe it!”, then collapsed into a chair and sobbed. Jessica seemed stunned; before she left, she tried to calm me and then gave me her card with her personal phone number.
Two of Eric’s friends, Rosario and Jason, who were in the adjacent waiting room, immediately came to console me. With surprised looks on their faces, they both said they didn’t know I had that in me.
I decided right then that I was never going to listen to anything like that again. I called my sister Marceline and asked her to make me a banner to hang above Eric’s bed that would read, “OPTIMIST ZONE Positive thoughts and words only; miracles come to those who believe”. Within two days she brought it down to the trauma center. It was orange and yellow with smiling suns. I loved it. A really nice orderly helped me tape it above Eric’s bed. I was relieved they allowed me to put it there. Some places can be very strict.
Eric’s first aromatherapy formula
That night I made an aromatherapy formula that I called “Eric’s Optimyst”. I filled it with Lemon for hope, optimism and joy; Frankincense for faith. From then on, several times a day, I sprayed it around Eric’s bedside. I gave a bottle to every person who came to visit, so they could spread optimism for Eric. At night when I got home, usually about 12 midnight, I would make 10 or so more bottles. Eric was getting a lot of visitors, even though they were not allowed in to see him, they waited in the visitors room with us.
If anyone said anything negative about Eric’s condition in his Optimist Zone I would point to the banner, and scowl at them until they stopped. To tell them, “we’re optimist here, if you have anything to say about Eric that is not optimistic, you say it somewhere else!”. This is the Optimist Zone.
Of course I realized Jessica believed she was doing her job, but I quickly sensed that almost every other hospital staff person around us felt the same way as Jessica. Most people couldn’t even make eye contact with me. The ICU was U shaped. When the curtains that separated patient cubicles were pulled back, all patients were visible from the nurses’ station. Eric’s bedside was the closest, about 10 feet away. People at the desk could see me when I was shaving Eric, or putting cream on his hands; whatever I was doing, people could see me at all times. Whether it was, maintenance, housekeeping, other visitors or staff, I would catch individuals looking over at Eric and me, with extreme sadness, and when they realized I saw them, they would quickly look down or look away.
Those hopeless expressions gradually began to change; by the time we left the hospital, 59 days later, most of the staff had embraced our vision of hope.The banner still hangs above Eric’s Bed today.
CLICK HERE to print your own Optimist Zone banner because everyone needs an optimist zone sometime.
Day Five: Brain Herniation
As if it wasn’t bad enough that my son Joseph had to be the one to get the dreadful call about his brother’s accident, then he had to listen to me screaming the morning we got more terrible news. Every morning I would leave for the hospital before Joe went to school. I almost never saw Joseph awake. Sometimes he would come to the hospital with friends to visit Eric, but he would not stay long, and visit Eric only a few minutes. Basically at this time, Joseph was alone. I was at the hospital; he was often asleep till I got home. He already did not see his father much since Jay had moved in with his girlfriend and her family, and now he no longer had his big brother.
The morning of day five I had been feeling hopeful, almost happy, enjoying my shower when the phone rang…… After all, Eric had been stable for the most crucial first five days, which was supposed to be a good indicator that Eric would, at least, live.
That first evening Eric had been chemically paralyzed at the scene, then again in the ER and continuously in the ICU, because it was generally believed that doing so would reduce the energy used by the brain and thus keep him more stable. But this paralysis, or chemically induced coma, made it impossible for him to breathe on his on, so a ventilator controlled his breathing. Despite fluid in his lung bases that was presumed to be inhaled blood from his facial fractures, his oxygen saturations were stable at 98%.
His heart rate remained steady at 80, and his blood pressure stayed normal unless they were moving him around a lot while working on him. That first night we had had a long meeting with the doctors. (I had previously told myself I wouldn’t allow invasive monitoring devices like Intracranial pressure bolts, but I was afraid, and fear motivated my decision to allow the insertion of a bolt into Eric’s head. Eric’s ICP (intracranial pressure)) was holding its own from 4 to 20. I also gave permission for a Swanz Ganz catheter to be inserted into his heart through a vein in his neck; this gave the nurses and doctors plenty of access to insert fluids without having to use his arm veins, and, most importantly, to assess his fluid volume status by measuring volumes inside his heart chambers. There were some problems with his fluid volume; when they gave him mannitol to reduce fluid in the brain, he would loose too much body fluid and then he would need to receive more fluid again. Even so, that was not considered life threatening.
Day three he was considered so stable, that I reluctantly agreed to a surgical insertion of a gastrotomy tube to draw fluid out of his stomach to prevent aspiration of stomach contents into his lungs, a jejunostomy tube for feeding him into a portion of his small intestine and a tracheostomy tube so the control of his breathing could be done thru his neck instead of a tube in his mouth, and would facilitate easier use of the ventilator. This was actual surgery under anesthesia; afterwards I was told he tolerated it well.
( Four years later when I review parts of Eric’s chart, and was reading the nurses notes, I found that he had not been so stable after all. His ICP increased almost every time he was stimulated as staff members worked on him. They had to hyperventilate him to get the ICP down and that was clearly documented numerous times in the nurses’ note Although I don’t believe I was directly misinformed, I have to wonder if the doctors read the nurses notes; was the need to hyperventilate him passed on in shift report, or the MD’s notified. When I worked at St. Joseph Hospitla ICU, that was standard communication of patient information. Had I known about the unstable ICP, I would not have consented to the surgery .I would learn the hard way not to believe words like “fine”, OK or stable.
For the first five days, (and all 54 days after) Tom drove Jackie and I to the hospital so we would arrive by 8 am. We stayed with Eric all the time we were allowed, all day except during procedures or nurses’ shift-to-shift reports. Tom would come back after supper with Debbie, Jackie’s mother, and Jen, her older sister. We would leave at 11:30 p.m., only after we met the night shift nurse and saw that Eric was still stable. Lastly, I would sing softly to Eric, the song, A Dream is a Wish Your Heart Makes, the same song that I had sung quietly to unconscious or chemically paralyzed patients when I worked night shift in ICU a few years earlier.
We left the hospital early that fifth night, at 8:15 instead of 11:30 p.m., only because he was finally stable! His ICP remained below 20! Bill and I got to spend some quiet time together, then, I actually slept. That was to be the last and only night we ever left early….
So, when the phone rang, with the shower water still running, I ran, soaking wet to answer the phone. “Hello Mrs. Grandstrom, this is Dr Linus, the neurosurgeon. Eric is on his way to the Operating Room ; his ICP was up; I did a spinal tap and now it looks like he is herniating his brain. I’m going to have to operate to relieve pressure to try to save Eric’s life.” Screaming and crying as the doctor spoke to me, I spastically collapsed into a naked wet heap. Like a plastic skeleton that had fallen off its hook, into a contorted pile of bones, I couldn’t untwist myself. Bill helped my slippery limp body up, and back to the shower I went, no longer hopeful.
With heart ripping anguish, I screamed and screamed, louder and louder, in bloodcurdling tones “OOhhhhhhhhhhhhhhhhhhhhhhhh GoddddddddddddMy Eric’s never coming back to me!!
OOOHHHHHHHHHHHHHHHHHHHHHHHHHHHHH GODDDDDDDDDDD MY ERIC’S NEVER COMING BACK TO ME!!! OOOHHHHHHHHHHHHHHHHHHHHHHHHHH GODDDDDDDDDD MY ERIC’S NEVER COMING BACK TO ME!!!! OVER, AND OVER, AND OVER, AND OVER, AND OVER, and over, and over, and over. and over again. Until I had no voice left with which ……..to utter, “My Eric is never coming back to me”…….Jessica’s words.
Bill gently knocked on the door, and asked if I wanted a drink of water. I whispered “No thank you.” Somehow I walked to the door of Joe’s room and peeked in at him. He was pale, unmoving, silently, lying on his abdomen with his head turned to the wall and his eyes closed. I knew my screams had traumatized him. I think they traumatized Bill, who felt helpless. What had my screams done to Joseph! I had no control. I could be no different. I was empty. I could help no one. I still had to call Jackie and the wave of pain traveled to her and her family.
We rushed to get to the hospital. No one spoke on the way.
Eric Survives Brain Surgery
Once again, I was praying for Eric to live. When Dr. Linus came into the waiting room to tell me Eric was still alive, he had to wake me, I must have passed out from exhaustion. I found myself sputtering and saying “Thank you for saving his life” even though in the back of my mind I wondered if the spinal tap he performed actually caused Eric’s brain to herniate. In my fogginess, I only thought I remembered that a spinal tap was contrainidicated in head injuries. While praying for Eric to live, I had promised myself that if he recovered I would not sue, besides, I did have seven years. (I was wrong , in PA you only have 2 years from the time you become aware of the problem, to actually sue; even though the hospitals must keep the records for seven years.)
When Eric came back from the operating room, Dr Linus had inserted a ventriculostomy drain that would drain cerebral spinal fluid from the ventricles inside his brain to relieve intra cranial pressure. A large round section of his scull, the size of half an orange, over his right frontal area had been removed. His brain protruded out of the opening, covered with his skin that had been sutured closed. You could see his brain pulsations through the skin. The purpose was to let the fluid drain out of the ventricles through the ventriculostmy into a collection bag, to allow his brain to rest, and allow the swelling to go down. Hoping that he would eventually become stable, and then the drain would be removed. His own scull bone was not saved; the Dr said there was less chance for infection if a plastic plate would be attached to the scull, when Eric would become ready to have it placed…???a few weeks?
J…the Mean Nurse
On day shift after the surgery Eric had a very pretty red haired nurse, Nancy, who was wonderful. The Dr decided to close the valve to the vetriculostomy to see of Eric’s brain could tolerate, and handle his own fluids. About 4 p.m. Nancy said to me they’ll probably open the drain soon; his ICP is gradually rising, and he is beginning to appear more swollen. I agreed with her, and was very glad she was Eric’s nurse. When the shift changed at 7 p.m. we had to leave for the waiting room because no one was allowed in the unit during shift to shift report. In fact you must wait to be called by the clerk or pt’s nurse to be notified when you are allowed back inside. The clerk called us in at 7:30, Eric’s nurse was J….. She looked like a “hot babe”; I know what they look like, supposedly I was one once. She was busty, very pretty; and I waited for her to come over to Eric’s bedside. She also seemed animated and energetic, buzzing around the nurses station. Apparently she had just gotten engaged.
By 8.pm. J… has not yet come over to Eric’s beside to actually see Eric, who was her only patient. His ICP is hovering between 20 and 21. Nancy had told me the drain was to be opened if the pressure was greater than 20. He also had a fever that hovered between101.5 and 101.6 visible on a continual display obtained from a thermometer inside his bladder at the tip of his urinary catheter. The bulge on his head was getting larger, and even the conjunctiva under his eyes (the inside out chicken neck skin) looked more pronounced.
I expected that when J… would come over to assess Eric, she would call the doctor to open the drain and turn on the cooling blanket. Eric was already laying on top of the plastic blanket with tubing connected to a machine that cooled water inside the blanket. All she had to do was turn a switch. Ice packs were not allowed in this unit without a doctor’s order; it seemed as though all staff favored the cooling blanket.
Around 8:15 J… comes over to check on Eric. Nothing happens. She just walks away. She is coolly polite, but definitely not friendly to us, (Debbie, Tom, Jackie or myself.) That happy energetic buzz I saw was no longer detectable. When she eventually comes over again, I mention my concerns. Referring to Eric’s pulsating bulge, She says, “It doesn’t look large to me.” Did you come over and observe it when Nancy gave you report? I asked. She answers, “No.” “I was here all day, and have seen it gradually increase in size, and Nancy thought so too”. I tell her how there is more conjunctiva hanging out over Eric’s lower eyelid that there was earlier. J… says that Eric received a lot of IV fluids and that is probably the reason for both.
I remind her that the cooling blanket is to be turned on for a temperature greater that 101.5. Justine says, “Yes, for a temperature consistently greater than 101.5, meaning 101.6 for longer than a few seconds. She would not turn on the cooling blanket. She used the same argument for Eric’s ICP monitor readings, flickering back and forth from 20 to 21. It had to be consistently at 21. She would not call the doctor.
The standoff continued till 9:30. The temperature and the ICP readings appear to me to be elevated more often than not. Eric’s face is now appearing asymmetrical. Being that his entire face and eyes have been disfiguringly swollen, the new asymmetry has me frightened. I’m practically hysterical, but I’m holding all my emotions back, because I don’t want anyone to think I’m a bitch. The bitchier staff thinks you are, the worse treatment both you and your patient will receive, and the less anyone will listen to you. That’s an unfortunate, but all too common reality with many nurses. Not all.
I motion to J… who has been sitting at the nurses station. She reluctantly comes over.
With my hands trembling, I restate my case. And say “If this was my patient I would have called the doctor an hour ago.” I want you to call the doctor.” She says, “OK. I’ll call, but I’m going to tell him it is because YOU want to talk to him.”
Doctor Huff, the on call MD who I had not yet met, comes into the ICU and goes right over to J… I could see he had an attitude, as if he were already warned?? Bitch mother, unrealistic weirdo nurse, I could only imagine what derogatory image had already been conjured up. When he came over, I said, I’m a nurse, people may think that I’m over reacting but I have been here all day. I told him what Nancy the day shift nurse said. I asked him to stand directly in front of Eric, and look at his face. Doesn’t the right side look larger than the left? Despite Eric’s severe facial fractures, horrible swelling and huge purple eyes, he had never looked asymmetrical. Dr Huff very carefully, and slowly checked over Eric. Dr Huff, thank God in heaven, agreed with me. He immediately opened the ventricular drain, and told J… to turn on the cooling blanket.
To this day I do not really understand why we had to have that situation with J…. A friendly, thorough day shift nurse, who also worked as the evening supervisor told me, that she would see to it that J… would not take care of Eric ever again. She never did. I was always friendly and said Hi to her when I saw her and tried to act like nothing had happened…so I could appear unbitchy. That night I stayed in the ICU waiting room. I was afraid to leave. Eric made it through the night, without any increase in ICP, but his temperature did not come down. It went up. To 103, then 104. That was the beginning of a fever that never really came down. Even when he was discharged to the nursing home his temp was 101.6. I didn’t find that out till 4 years later when I read the chart, but that’s another story
ReHab or Nursing Home? Rehab or Nursing Home?
One of the few times I was actually at home, I answer the phone and immediately tell the telemarketer that I can’t listen to her because my son is in a coma at a trauma center, and instead of hanging up she tells me she works part time at Moss Rehab. “Maybe that’s why I ‘m calling you. They have a coma stimulation program.” She turns out to be an OT student working part time as a telemarketer and gives me the director’s name and phone number.
I call the next morning. The director says they have an available bed in their 10 bed Unit, and that she will contact the Trauma center to see about ordering tests that are needed and send their liaison to see Eric. Within 48 hours all the work is done and she calls me at 3:00 p.m. to tell me they can take him!!!! The next day!!!! He’s going to rehab; NOT a nursing home!!! I make several hysterically happy phone calls to tell mine & Jackie’s family the good news!
This was really timely, because the Trauma Centre had been trying to discharge (get rid of) Eric ever since that almost debacle in October when we went to the Pville nursing home that could not handle Eric’s care. (and the ambulance driver saved us) The social worker, Jessica, had sent out 57 referrals in 3 states and no one wanted my Eric. In the beginning of this process Jessica had given us a list of all the Nursing Homes in Berks County (where we live) so we could pick our favorites. None of our favorites had a bed for Eric. There was one nursing home that we vehemently did not want Eric to go to, ???? MANOR!
I worked night shift there one summer in 1977 when I was a nursing student; it was called Reading Nursing Center then. I only lasted 2 weeks. Making the rounds to clean up patients was fine and expectedly normal work, but it smelled very foul and I had an uneasy feeling about it. An LPN who worked there told me that she couldn’t trust the aides; they make up vital signs and even Chem Stick (blood sugar) results. She once gave insulin to a person that an aide had charted as having a high result, with potentially disastrous results, and was suspended for 3 days. Ever since, for patient safety, she rechecks every low or high result, before giving insulin, and rechecks abnormal vital signs. She was looking for a new job. She said the union was very strong and it was really hard to for the aides to get fired. Now I am generally for unions, but this appeared to be a unique situation.
We worked in teams of three, the one girl was really nice. The guy on our team would blurt out disgusting sexual comments in the middle of normal conversation when you least expected it, so you couldn’t tune him out in advance. Once he blurted about a sexual experience he had with his brother. That was it! I tried to avoid him as much as possible.
The final straw that made me quit was when at change of shift, I saw a day shift aide hit a patient in the face with a towel. You know how some people snap a towel hard to hit someone’s butt, well this was to her face. The aide turned around and saw that I saw her. She looked MEAN; and I was afraid of her. What makes this even more awful, is that this patient had a reputation. I was warned about her, that she hits and bites and is really hostile. She had not exhibited that behavior to me, but I only changed her a few times, and the really nice girl on our team always helped me. Was this aide the real reason why the patient was hostile? I’ll never know, because I did not come to her rescue, I did not report the aide, I simply quit in fear. I was a gutless, pathetic, irresponsible, shameful wimp.
A couple weeks later I saw another nursing student who worked nights on different team; she told me she reported some aides and the next night her tires were slashed and her windshield broken…then she quit.
Reading Nursing Centre was eventually cited for numerous violations, bought by another company that was said to have made improvements, and changed the name to ???? Manor. My cousin Julianne had a stroke from a brain tumor while living in New Hampshire; her husband divorced her and wanted to put her in a nursing home. Her parents in their 60’s at the time, with the help of Senator O’Pake got her to PA and ???? Manor was the only home in the area that would take her. My aunt and uncle seemed OK with the place; they both were there every day until they died. People used to ask them why they went every day; I eventually learned why they went.
The social worker, Jessica, was on vacation, so the director of the department took over the task of finding a place to send Eric. Paying no attention to our preferences or our list, she got two beds; one in Paoli, and one at……????? MANOR! I was soooo happy that Eric was going to rehab and not the Manor. Eric once made a point to tell me and Jackie that he hoped he would never have to go there. When he was delivering pizza, he had a delivery there on the second floor, and whatever he saw, gave him a really, really bad impression.
At 4:30 Eric’s bedside telephone rings. It’s the Moss Coma Stimulation Program Director. There’s a problem. She knew I had applied for Medical Assistance for Eric (at the insistence of the trauma center billing office when we got the shock that Eric’s fathers Blue Cross Blue Shield Personal Choice Policy negotiated for the ironworkers in 1984, would not pay for anything related to a motor vehicle accident. That’s another story) She said it had to do with the fact that Eric already had a MA number. He could not be admitted into the program because he was already on medical assistance! To this day I do not fully understand.
From being so happy that Eric was not only not going to a nursing home, but going to a specialized rehab that only ever has 10 patients at a time, that is totally devoted to waking up coma patients, to lose that, I became inconsolable. I heard the director’s voice, as if in a distance, muffled space, saying something like “Maybe this was not really the place for him. You can call me for advice. I’m so sorry.”
I called Jackie’s mom, Debbie with the bad news, and then tried to figure out what to do. I called the director at Mifflin Center where my mother in law completely recovered from a coma post cardiac arrest after perforated ulcer surgery. I cried, I begged. They had one bed, but it was in the dementia unit. I called another home, and that administrator flat out said, “I cannot take a patient like him.” Eric’s projected life long care was too costly and really, no one wanted him.
Next, the head of social work came to Eric’s room to talk to me. Granted, she was a very nice person, but her job was to get Eric discharged. She brought a brochure with a picture of the nursing home in Paoli. It was a tall brick building with white pillars, and it specialized in respiratory care, including ventilators. Eric was no longer on a ventilator , but still had a trach and cpap breathing treatments, maybe this place could wean him from his trach. The trauma center was giving us one more day, I would go to see the respiratory care center before I decided whether or not to send him there
In the car as I drove home, I sobbed and sobbed, so uncontrollably at times that I couldn’t see and had to pull off the windy roads. I didn’t want to get in an accident. I had to pull myself together. I yelled at God, Why couldn’t Eric just go to rehab? Why doesn’t anyone want him? Please, don’t let him go to the Manor, please, please. Why even let us serendipitously find out about Moss and then take it away? After about a half hour I got my strength back and focused on getting home.
The next day I took RT 30 to get to the Paoli nursing home because it looked shorter on the map. It was a bumper to bumper, little city to city irritating long one and a half hour drive. The place did not look like the brochure. It was much smaller; I met with the director who was to take me for a tour. I didn’t like it the very first second. It was too noisy. The rooms had 4 people each; almost everyone was on a ventilator. When I asked the respiratory therapist how often people are able to be weaned off their trachs, she told the truth, “We have been able to wean some patients, but most of the time, not.” It was really a home for long term ventilator patients. I was very glad I went there before making any decision. Eric was not going there, plus it was way too far.
That evening I went to the Manor with my friend Carol Parsons. She is a very spiritual person, a Reiki Master, one of my first aromatherapy students with a very calming presence about her. She suggested I pray about this, and keep an open mind. As we walked through the door, the first thing we saw was a welcome sign with pink foil angels; light seemed to flicker from their wings. We both saw the light. As we walked down the hall to the area where Eric would be going I saw Victoria Geunther, a former colleague from St. Joseph Hospital when I worked in ICU; we had even worked together on a few special projects just a few years earlier.. She was now the assistant DON on evenings at the Manor!
When we got to the nursing station I met the LPN who would be in charge of Eric on evenings. I mentioned many of my concerns. Her answer was, “We may not be the best in the area, but we sure are not the worst. We care about our patients and give the best we can.” I felt that was an honest and realistic assessment of the situation.
Knowing that Vicki would be there, and after seeing the angel wings flicker, I was beginning to get more comfortable with the idea that Eric was going to the Manor. I had no other choice, Eric was going to the Manor no matter what! Lord knows I did everything humanly possible to prevent him from going there, so I was relieved not to feel hysterical about it anymore. Plus, it was only two miles from my house.
Eric was admitted to Spruce Manor the day before Thanksgiving 1999. I got to take him home December 15, 2000 and that’s another story.
Some of Our Heroes
We have had many heroes, angels and more to come into our life. Here are just a few.
Medivac RN Saves Eric-----Twice
After about six weeks or so in the trauma center, the hospital was trying to find nursing home placement for Eric. Even though his skull bone had not been replaced and only the scalp was covering his pulsating brain, I was told, “We’re really not doing anything for him that couldn’t be done in a nursing home. The skull replacement could be done by anyone and did not have to be completed by the surgeon who removed it at Brandywine Hospital.” They wanted to send us to a nursing home as soon as possible. The social work department had already sent out fifty-seven referrals in three states and nobody would take Eric. He was on medical assistance, would require a lot of care---for a long time, (since he was young), and basically nobody wanted him. So when they finally got a bed at the Nursing Center, his discharge was arranged in a few hours and he was going the next day. It was over an hour drive from our home.
Eric was on a special oxygen apparatus called CPAP which stands for Continuous Positive Airway Pressure. It was necessary that it be connected to his trach because Eric had had over twenty broncoscopies to treat pseudomonas pneumonia and collapsed lungs and he needed this pressure to keep the alveoli in his lungs open.
He needed a high level of oxygen and special equipment for breathing treatments. The social worker said that the DON (Director of Nursing) confirmed that her staff would know how to take care of it. I had talked to the director of nursing personally. She assured me that the proper equipment was already on its way and they could handle CPAP and take care of Eric. I was very nervous and scared. I didn’t want Eric to go.
The ambulance wasn’t able to take us until about 5:00 in the evening, so I followed in my car. As it turned out, the ambulance driver, a middle-aged man with a beard and glasses, happened to be part of the medivac team that originally rescued Eric. He was an RN in the helicopter that took Eric to the trauma center. He also was the owner of the ambulance company.
It’s almost 7 p.m. till we get to the Nursing Home; we go up the elevator and as we walk down the second floor hallway I’m really scared, because it looks like a scene out of the old Olivia de Haviland movie called “Snakepit”. (About a mental hospital) We were either going to the Alzheimer’s unit or a mental health unit All the patients were standing in the oldish, dark, drab, old 50’s grade school green hall, gathered together in a cluster. There was dead silence. Everyone was looking at Eric with blank expressions and wide-eyed stares. (I quickly imagined them surrounding his bed and pulling at his trach or touching the pulsating bulge on his head.)
We go into the room and the equipment is not yet in the room, they don’t even have sheets on the bed yet, and while they’re making the bed I see an ant crawl over the bare mattress. At this point I’m saying to myself, “I’m just going to throw him over my back and get him out of here.”
When the equipment is finally brought to the room, it turns out that they did not have the right oxygen for Eric, so they couldn’t hook up his special CPAP. The nurse there whispers to me, “I know the director told you that we can handle this. We can’t. We don’t know what we’re doing.” I really appreciated that woman’s honesty because she may have actually helped save Eric’s life.
The ambulance driver saw everything that was going on. He said, “I can’t leave him here, and I am not going to. Don’t worry, I’m going to take care of you and your son.” So he called the director of nursing of Brandywine hospital at home and I heard him say, “We have to bring this kid back to the hospital. This is not safe; I am not leaving him here.”
Another 15 minutes or so passes, and he makes more calls. The woman who was riding with him in the ambulance was already on overtime; their schedule was really taxed. And yet they weren’t going to leave us there! Another call and we were on our way back to the hospital! ,
He saved us! Eric was taken back to the safety of the intensive care unit, even to the same bed. Although I sent him a thank you card and an Eric’s Optimist, at this moment I cannot remember his name. Yet, he is one of the biggest of many heroes in our life. He went out of way, beyond his job description, followed his heart and rescued my son. (twice)
It’s through the grace of God he was driving. I would not have known that they didn’t have the right oxygen concentrator. They had an oxygen tank, not the equipment necessary to maintain the oxygen level high enough to give Eric what he needed through the CPAP.
My emotions were so raw. First, scared to death, then powerless and desperate, and then rescued!!! I kept saying to myself out loud, “Thank God, thank God, thank God for the ambulance driver!”
Eric was eventually transferred to the Progressive care Unit. The skull bone that had been removed was surgically replaced with a plastic “skull ”. Eric was gradually weaned off CPAP to humidified oxygen and eventually transferred to a nursing home, but that’s another story.
Sandy Schultz----And the Craftomatic Bed
There was a nurse on night shift while Eric was in the trauma center whom I had never met, Sandy Shultz. A few weeks after Eric went to the nursing home I received a phone call from Sandy. She told me that she had been Eric’s nurse on night shift in the progressive care unit and she “just really bonded with him”. Now consider that he was in a coma, hadn’t moved yet, and occasionally opened only his left eye. Sandy told Eric that her family was praying for him and she included his name in the prayer group that her mother organized. Now she wondered if she could call and see how he was doing. I said, “Of course!” Then she asked, “Well, maybe I could come see him?” I exclaimed, “Yes! Yes! We would be delighted”
So Sandy and her husband Clark drove from forty-five minutes away to visit Eric in the nursing home. They arrived while I was still bathing Eric in the shower room. So she came right in and helped me, and we finished Eric’s shower together. Sandy helped me get Eric back in bed with the hoyer lift. It was like having my own nurse-helper. That’s how I met Sandy; and of course, I just loved her. I could see that her husband, Clark, cared about Eric, too.
So they started coming almost every month to visit Eric. She asked me what Eric liked. I said, “Well, he seems to like live music. I wish somebody could play a musical instrument at the bed-side.” I told her how my friend Bill played electric guitar at Eric’s bedside one time, and even though Eric didn’t move, when I looked directly in his eyes, I felt that he enjoyed it. And she said, “I play the flute; I play the flute in church.” So next visit she spent a half hour playing beautiful flute music for my son. Eric looked peaceful; even though he wasn’t making any overt responses, we knew he loved it. And I loved Sandy, and Clark.
After almost thirteen months in the nursing home, I finally got Eric home. Sandy and Clark came to visit. They helped me put Eric in the light gate; they helped me sit him at the side of the bed. By this time Eric was much more responsive and was really enjoying their visit.
I had always wanted to get Eric a Craftamatic bed. We were using a sofa bed that just had a little head lift -- they called it a TV tilt -- and I mentioned to Sandy, “Boy, I wish I could get Eric a Craftamatic bed some day.” Well, that following weekend at her church a couple approaches her and her husband and asks, “Do you know anybody looking for a Craftamatic bed? We want to give one to somebody who could really use it.” So we get a queen size Craftamatic bed within a week of wishing for it! (I haven’t yet figured out how to make other wishes come true like that.)
It’s almost nine years since we met Sandy and Clark. We talk yearly or so, to see how Eric’s do-ing; Sandy has sent him birthday cards, and a prayer book called PUSH…..pray until something happens. I just had a 30th birthday party for Eric March 22, 2009 and Sandy and Clark came up for it! She actually made Eric a blanket!.....an extra long one because he is so tall.
She gave me a pewter angel with the inscription “I said a prayer for you today”. She is one amaz-ing woman and we are so lucky to have Sandy and Clark in our lives.
To me, the most moving aspect about the story of Sandy is, that, in the still of the night, while taking care of my non-responsive, comatose son, a woman I did not know, felt his sweet sacred presence, and their spirits bonded
When Eric was in the nursing home I used to go to monthly family meetings, called IPoc, and one of them involved a nurse there reviewing all of Eric’s diagnoses. They each had a code num-ber. When the nurse said she had Eric listed as having respiratory failure, I said to her, “Well, he never had that. He was chemically paralyzed and put on a ventilator. He didn’t have respiratory failure.” She said, “Oh, that’s okay, he fits into this particular category and I have to group them according to their number.”
She had him listed as having a neurogenic bladder. I said, “He doesn’t have a neurogenic blad-der. There’s nothing wrong with his bladder, he just has a foley catheter in place.” She says, “Diane, that fits into a certain grouping and we need these particular numbers. They’re basically identifiers.” I kind of got the idea they were related to how many hours of care or amount of money or something was based on these particular categories of diagnosis, so I stopped thinking about it.
Time goes by and I don’t think about it any further. It might have been maybe seven, eight months that we’re in the nursing home and that nurse either quits or gets fired ( I heard both ver-sions)and someone named Sue Sychterz takes her place. Three days into her job Sue comes to me and says, “Diane, your son has a wrong diagnosis. We have him listed here as “permanent coma”, and he’s not in a permanent coma, that’s not his diagnosis.” I said, “ I don’t know where they would have got that from because a permanent coma is a “profound state of unconsciousness for which it has been determined that there exists no reasonable expectation of regaining consciousness” A person can’t even be declared in a permanent coma until you’re in a coma for at least a year. I was the first staff nurse at our hospital to get on the Administrative Ethics Committee. I spent several years on the Ethics Committee . I have been featured in “Woman’s Day” magazine and in “Hospital” magazine for my educating the public about right-to-die issues and things like coma and the Karen Ann Quinlan case. So anyway, I would have been shocked if someone had told me my son’s diagnosis was permanent coma.”
So she called the doctor and told him he would need to change the diagnosis to ????????? “”.
Doctors are often told by the admitting facility the specific wording of information that the facilty needs; perhaps he was instructed “we need a diagnosis like “permanent coma”. I’m not sure how it happened, but he quickly changed the diagnosis. The permanent coma diagnosis is indicative of how -- not necessarily our doctor, who we love, peo-ple looked at Eric, that his condition was permanent and that he was never going to get better. And, of course, they-were wrong.
Unbeknownst to me, correcting the diagnosis opened Eric up for services for which he was NOT previously eligible, paving the first stepping stone in the process for me to get my Eric home. Sue could have just started with reviewing the new admissions that came in, never looking back over the ones that were already there. The facility had 200 patients. But in three days she went beyond her job description, did what was ethically right, and found the error in my son’s chart. She’s one of our heroes. If it wouldn’t be for Sue Sychterz, Eric wouldn’t be home with me.
Sue wondered to herself why such a young person wasn’t getting services. So she made a refer-ral to Liberty Resources, an agency that tries to make living in the nursing homes a little easier. Liberty’s social worker named Renee who would come into Spruce Manor later told us that she often questioned why Eric’s name was not on her referral list. Well it wasn’t there because he had a wrong diagnosis. Sue Sychterz discovered the problem and solved it!
Liberty Resources provides services like transportation, and eventually they started paying for the van service that would drive my son to Aquabilities, where he got water physical therapy. Liberty Resources tries to get people out of nursing homes. It took until December 15, 2000 for me to get my son home. He had been in the nursing home almost thirteen months. Liberty Re-sources paid for the ramp out front. I couldn’t get him home if we didn’t have a ramp to get him up and down the front cement steps, because we wouldn’t be able to get him out in case of an emergency. There were other rules and regulations involved in getting a person home and most of them were made possible through Liberty Resources.
At the time Eric had been admitted to the nursing home, Sue had been out with back surgery and she was just back at the nursing home in this new job (where she saved us) a few weeks, when apparently there was still something wrong with her back. She again had to leave the nurs-ing home. (She had been in her job just long enough to make a big difference for us).
After we went home, of course, we didn’t see Sue Sychterz. During one of the times we were at Health South for outpatient physical therapy, there she was, Sue Sychterz! in the hallway. I ran up to her and I actually kissed her hand and said, “I have to thank you; you are one of our stars. Had you not gone a little bit beyond your job my son wouldn’t be home.” It was her new employee orientation and her supervisor was with her; that was about two years ago. And just this past Saturday -- August 24, 2003 -- we went up to Health South to get Eric weighed and there’s Sue Sychterz again in the hallway! She now has another name though, she’s married and her hair’s a different color and I said, “Eric, Eric, there’s our hero.” And I told her, “You know, you will always be somebody who made a big difference in our life.” She was so happy to see Eric and Eric stood up with me for her to show her how good he can stand and we were just very happy to see her again.
Eric and Mom’s Serendipitous Trips (2004)
When I read that the National Association for Holistic Aromatherapy’s Conference was being held in Norfolk, VA this year, a flame of hope flickered in my heart that just maybe I could actually get there. It was almost five years ago that I resigned as NAHA’s first PA Director, after my son Eric was head injured in an auto accident; six years since the World of Aromatherapy Conference in St Louis, where, as a new wide eyed-aromatherapy director, I listened to cutting edge information from international experts while having a splendiferously wonderful time. Since then, the only Aromatherapy programs I attended, were those where I was the speaker.
I really wanted to go to the conference. I called my sister in law, Robin, to see if she would be available to stay with Eric April 30 to May 1. Even though the conference was 4 days, I though it would be safe for me to be away for two days. Last June when I traveled to the middle of the state to do an Aromatherapy consultation at a Long Term Care Facility, it was the first time I was ever away from Eric overnight--actually for 36 hrs. In November I flew to Winter Haven, Florida to speak at a Nursing conference, and was gone from him for 40 hours. Robin did very well with Eric. Although I hadn’t actually made the decision whether or not to go Norfolk, I was thrilled to hear that Robin was available if I needed her.
Then came the call for speaker proposals for the conference. I so wished that I could be a speaker: but I didn’t feel that, even after working with aromatherapy for almost 10 years, I had any information that would be of the caliper deserving of an international conference. Then I had an idea! Students in my classes and lectures always seemed to love my serendipitous aroma stories…things that happened to me because of aromatherapy. I began writing the list of stories I thought would work, and arranged them in a logical order. The hardest part was completing the speaker proposal question, why I believed ”Serendipitous Aromatherapy” would be important to participants. Aside from the simple “It would be a break away from more concrete, didactic sessions.” the real reasons were that these stories could inspire or renew the belief that essential oils really work beyond the realm of chemistry and chemo-type; to expand our perceptions of reality; move us forward on our unique path; aid us to find solace and purpose in times of great pain. Most profoundly, through the examples, validate the esoteric, life changing possibilities that we can become open to through the pursuit of aromatherapy. Whew!
When I didn’t hear if the proposal was accepted, I assumed it was not. I called “just to check for sure”, and the Board of directors had approved my topic. I was jumping up and down shouting “Yippee”. All I had to do, was write my entire two hour talk so it could be published in the proceedings book, and make travel arrangements.
Two weeks before Easter, Robin, the only person who can care for Eric well enough that I would feel secure traveling, had to cancel. The farmhouse her family was renting was being sold; a condition of the agreement was that it be vacant by May 1, the very day I was scheduled to speak. First I was shocked; then I reluctantly thought, “I guess I’m just not supposed to go. The stories were already in the proceedings book; participants could simply read them. Maybe no one was even going to come my talk anyway. I’ll just cancel.”
When the owner of Health Options Institute, the massage therapy school that I teach an aromatherapy course for 3 times a year, called to talk dates, I told her I was too overwhelmed in the decisions department. She suggested I call Patti K. a Circles of Life/Geotran practitioner. I had met Patti about seven years ago and really liked her; she was sweet and gentle but I never took her course because I thought the geometric energy work seemed too complicated.
Patti told me she could do an integration over the phone. It would clear some things in the energy field. Being that I already was familiar with her, I thought, “Well it certainly can’t hurt, so we may as well try it”. Eric agreed to let her work on him first. Using the speaker-phone Patti asked Eric questions, and I told her whether his answer was thumbs up or down. (yes or no). The session lasted over an hour. She asked Eric to do several different movements; some he could, and some he could not. When Patti asked him to touch a place on his body that had dis-ease or pain, he struggled to touch his left shoulder and the left side of his chin. I heard her saying geometric numbers out loud. The next day I saw him turn his head all the way to the left and touch his chin to his shoulder, something he could not do since before the accident! I was deliriously in awe and so was Eric. After that, I kept asking Eric to touch his chin to his shoulder numerous times a day, so I could be sure that he continued to be able to do it. (As I’m writing this, I just asked Eric to do it again; he laughed and obediently touched his chin to his left shoulder)
When I told Patti that news, she invited us to attend the Easter Gathering of Circles of Life Practitioners at the Lancaster Host Hotel, April 9-11. The organizer of this process was having a weekend class/integration. It would be level 18, and I was afraid to take level 1?
She said it wasn’t only about the course, but the people and the energy. Just by being there, Eric and I would benefit from the latest energy integration. Frankly, since Eric could now turn his head all the way to the left, and thus also hold his head up a little easier than before, I really began to consider going.
Eric and I had NEVER been anywhere overnight since the accident. He only gets out one hour a week when I take him to aquabilities pool on the W?C bus. He is in the middle of learning to eat again after being 100% tube fed. He eats only pudding like foods, and baby food. He is fed sitting in our craftomatic bed in the full up position with his head carefully propped with two pillows. He had only ever eaten a few minutes sitting in a chair. He got too tired to eat, from the struggle of having to hold his head up and swallow at the same time. Feeding would be a challenge. It takes about 6 hours a day to feed him. Every time Eric turned his head all the way to the left, I thought we should find a way to go.
Patti invited us to the Easter gathering just a few days after Robin told me she couldn’t stay with Eric while I traveled to Norfolk. I began to wonder, if maybe I could take Eric to Norfolk with me. I would certainly know if I could care for him safely in a hotel, if we went to the gathering. So we made the big decision---yes. Eric was willing to try to eat sitting in a chair.
And I decided that we would go to Lancaster. There was a lot to prepare. I had to make enough of Eric’s special food, Weight Gain and Ensure Plus, to last three days; twenty-seven 4 oz little containers. Because the Lancaster Host didn’t have a refrigerator or microwave available, I got patient ice packs, put them in a cooler to keep his food and my baked chicken fresh. We would have to eat our food at room temperature, which is what we do most of the time anyway, otherwise the weight gain mix gets to soft.
Patti suggested we request a roll-a-way bed be put in the convention meeting room. She had seen them used before. Dorothy, the woman putting on the presentation, said she was very happy that Eric would be coming and a roll a way bed was fine with her. Then we determined that it was possible to get from the wheelchair accessible room to the specific meeting room. (The Host is a somewhat older hotel and not every meeting room was wheelchair accessible.) Rodney, our dear friend and wheelchair van driver could take us to Lancaster. So off we went.
Eric had to sit on his wheelchair in the back of the van for the 45-minute ride to Lancaster. He had never been in a W/C bus or van longer than a ½ hour. Route 222 was being thoroughly reconstructed and had lots of dips and bumps, making it a very bouncy ride. Eric yelled quite often on the way there. The reason being, the bouncing is like a bronco ride that shakes Eric’s head up and down, hurts his neck, and slams his butt against the seat. At 6 ft 2 inches, weighing 155 lbs, he doesn’t have extra padding on his butt. I would kind of lay over him to help absorb the bounce, but it was an uncomfortable, sometimes painful ride.
That was phase one – uncomfortable ride on the way to the hotel.
So we get in the hotel and everything’s flows. They have our reservation. We go up to our wheelchair accessible room number 601 with the two double beds. There is no roll in shower, only a railing in the tub. I had asked for a wheelchair accessible room, not knowing that it would not automatically include a roll in shower. Eric will have to get a bed bath. Rodney helps us with our luggage. There was a comfortable looking wing back chair in the room with a moderately high back. I put that in the corner against the wall, sat Eric in it, propped his head up with 1 pillow and he was able to eat that first meal sitting up in the chair.
The conference started that evening. So we ate and then went down to the meeting room. I felt a little strange. I only knew about 2 people in this whole roomful of about 60 people. We were in the back of the room with Eric comfortably resting on the rollaway bed.
I was clueless about the circles of life geometric energy work and I didn’t understand one sentence Dorothy said that whole hour even though it was in English. There was a lady in the back of the room from Texas who instantly took to Eric. She came over, introduced herself, and hugged him. She became our friend instantly.
We went to up bed, had an uneventful night. Eric ate his breakfast sitting in the chair with out any problems,
Once again, during the lectures I kind of didn’t know what was going on.(Don’t say “Surprise, surprise!”) I was getting more of a feel that it was a good place to be, though. As people introduced themselves, they were various professionals from all over: a woman judge from Texas, a literary agent from New York City, a computer specialist from Korea, two sisters from Idaho, two nurses from Philadelphia, and an alternative therapy doctor from Lancaster, who ironically had spoken for me in 1994 when I coordinated the first holistic health awareness fair (that led me into aromatherapy). We remembered each other. Very interesting small world it is.
I took extra breaks, so I could take Eric up to the room and feed him; always in that chair in the corner with his head propped with pillows. We managed to get all through Saturday attending every session, not always on time, but Dorothy understood.
Saturday night they actually broke up the main group about 7. I fed Eric and I promised him I would take him in the pool. They had a heated pool there and it was open till 10PM. I thought “I’m not going to have any trouble getting Eric in the pool because I do it all the time at Aquabilities”. (Eric gets 1 hour a week of physical therapy in the water and I am the second person) I take him down the pool steps in reverse piggyback. He’s on my front and I go down backwards. The staircase was the PVC piping, not as strong as the solid metal one at Aquabilities. I asked the lifeguard if he thought he’d be able to help me get Eric out of the pool. He was an older black gentleman, well, older for a lifeguard, probably in his 40’s. (That’s actually young since I’m 54). Anyway, he said could.
I had Eric’s splints on his legs so he could stand and walk in the pool. We go down backwards and we’re in. Saturday night of Easter weekend and there happens to also be a Jewish program going on at the hotel, so there were a lot of families with young children in the pool. Eric is too shy to stand or walk in the pool. So he stays on me in the reverse piggy- back mode and I walk him around the heated pool. We have some relaxing mother son down time and I’m real pleased with myself that we made it through one whole day. When we go to get out of the pool and I go up reverse piggyback and that’s fine until we get to like the 2nd step from the top when we’re no longer in the water. Eric decides to help and it would have worked out great. He put his left foot down on the step and he was going to push himself up into the chair but, the back of the shoe and the splint got caught under the step piping and he couldn’t help us. The father of two little girls gets out of the pool and helps us lift Eric’s butt on to the wheelchair. The bottom line is we did it, and we had a successful, pleasant time in the pool! Back to our room and to bed we go.
I must sleep with my eyes open – because in the middle of the night I see Eric start to fall out of bed. I catch him just in the nick of time, when his head is about to go between the nightstand and the bed where it would’ve fit perfectly. But he was heavy and I had no shoes on and I had a slippery nightgown on and here I am -- he’s kind of slipping down my body while I’m struggling to get him back in bed, but we do it. I knew then that a decision I made to get two full-size beds as opposed to one king wasn’t the right decision. So what we learned there was, next time get the big king bed and sleep together.
Sunday morning, the group goes out for a big lunch at another facility. We sleep in. I give Eric a bed bath and then we continue with feeding. The feedings are going great. Eric is maintaining his 2000+ calories.
Our new Texas friend calls the room at 3:00 p.m. when the group got back from lunch. I wheel Eric downstairs (we take the elevator). They were preparing to finish with inspirational talks and then have this big finale where everybody gets around in a circle, hold hands and sings. They were singing a church song that most of the people there knew but I had not heard before. What they were actually doing was having a celebration of life. Now it was Easter Sunday. There was an aisle between chairs like the way it’s set up in an auditorium and people would run from the front to the back with their hand up in the air as if they were a winner at the Olympics. The idea was to run up there with something in your mind and heart that you had prayed for, that you wanted, that you believed had already happened. So, one by one, people ran up and everyone clapped. Almost everybody had done so except Eric and I. They said, “Why don’t we push Eric up in the wheelchair?” Now had I known this was going to happen, I would have put his splint on and maybe we could have tried to walk up.(It takes myself and one other strong person to help him take steps.) The two nurses said, “Come on, we’ll come with you.” So we’re pushing the wheelchair up and this was a really an inspiring time, because Eric has his arm up and, of course, I’m believing, he’s completely healed, and that’s what we’re thinking as we’re going up the aisle; as we walk up, imagine 60 people clapping and shouting rhythmically, “Er-ic, Er-ic, Eric, Eric.” Eric had never been in a room of more than 3 or 4 people since his accident in September of ’99. So that’s the most people he was around at any one time. Throughout the weekend, people really began to love him and they said they were so glad he was present. They thought his presence added a greater spiritual dimension to their whole weekend. And, by then most of the group had come over and spoken to him and gotten his thumbs up. It was a really beautiful, inspiring moment as we walked up that aisle, feeling everybody wishing us so well.
While people were clearing out to leave, Patti and her husband came over with 2 other practitioners to do energy work on Eric as he rested again on the roll a way bed. Eric gave thumbs up to the idea. They gave him drops under his tongue and softly, simultaneously called out numbers like, “2-3, 5-3, 6-5 and others. They were doing more work in clearing Eric’s energy field. Eric got loud, like he was about to do the wild thing, and then quickly quieted. I took Eric upstairs to wait for Rodney. It would be at least 10 p.m. because he had a lot of other people to return to their homes from Easter trips. The two practitioners did some work on me, and I felt lighter. (I didn’t weigh less.) We get back home to Reading about 11:30, and went straight to bed.
Eric and I were really glad that we went to Lancaster. We were both a little scared to go, but we did it, and gained confidence. The experience was so successful, like a stepping- stone. OK -- if I can take care of him in a hotel, maybe I can take care of him in Norfolk.
The next morning, when I begin to feed Eric in bed, he has trouble eating. He couldn’t get a comfortable head position. He could no longer eat leaning slightly back in the Craftomatic beds full up position after sitting straight up in a chair all weekend. I had to get him out of bed to eat sitting in a chair! Which means, ever since Good Friday, Eric has had every meal sitting up in a chair. So what we learned from Lancaster was, sleep in a large bed; I can take care of Eric in a hotel, and the gift is that he now eats all his meals sitting up in a chair. So now I’m thinking, OK, maybe I really can take Eric to Norfolk.
I called the director of NAHA.(National Association of Holistic Aromatherapy) and explained the situation. Cheryl exclaims, ”My gosh, we’d LOVE to have him, of COURSE you can bring him!” I told her that we’d need a rollaway bed, and asked did she think it was appropriate in the convention room where the main speakers would be presenting; there’d be a big dinner, and then there’d be the workshop rooms. Cheryl assured me that they would be very happy to get us everything we needed. I told Eric, ”We’re going to Norfolk!!!”
I started to make the arrangements. When I told the woman at US AIR that my son was a wheelchair person flying for the first time since his accident she was wonderful and patiently stayed on the phone with me at least 25 minutes. She gave me the measurements of the seat so I could tell whether Eric, with his really long legs, could fit. We picked his seat at the bulkhead; the first row in coach. If you’re facing the back of the plane, it’s on your left. That would allow Eric’s left leg, which always wants to extend, to have room in the aisle instead of hitting the wall. She described the process of how Eric would get into the plane. In his own wheelchair, he would be wheeled right up to the cabin door. Then airport staff would transfer him to a special narrow high back chair on wheels, able to navigate the aisle to his seat. We would board first and exit last. When we arrived in Norfolk, Eric’s wheelchair would be ready for him at the door, and he would again be taken out in the narrow chair by airport staff. Roundtrip air fair for both of us came to $464. We were going for five days, arrival 11 a.m. Thursday and depart 7:30 a.m. Monday.
When I called the hotel, the Sheraton Waterside, they said, “Yes, a wheelchair accessible room for those dates is no problem, and we’ll arrange for early check-in. A rollaway bed will be at all the functions.” The hotel offers room size refrigerators and microwaves for only $5 per day!
Once again there were preparations beyond the normal packing of clothes, briefs and pads: Weight Gain for five days; tuna, salmon and pumpernickel bread for myself; and an entire suitcase full of aromatherapy and materials for my two-hour presentation. I went out to the Reading Airport (we were flying out of Philadelphia) to get a look at the narrow chair that would be used to get Eric inside the plane, to assure myself that he could fit on it, to see if it looked manageable. The very friendly airport staff took me to a room behind the ticket counter to see the chair and it looked like it would be OK.
What ID were we going to use for Eric? His driver’s license expired 2-11-00, his twenty-first birthday. He was still in the Nursing Home and not overtly responding at that time. He does not remember that birthday; when someone asks how old he is, and he shows with his fingers, he’s often off by one year. We live five blocks from the driver license bureau. After I gave him a haircut and beard and moustache trim, we went to get a state photo ID. The personnel were extremely accommodating. I presented his old drivers license, birth certificate and SS card. The kind man took the drivers license and in a few minutes came back with a state ID with Eric’s 1998 picture and the date 4-23-04. Although Eric still has his handsome face, the picture is six years old. “How will we explain a full beard growth in five days?” I asked. The man said, “ You could shave his beard”.
Eric loves his beard, I thought to myself. It was obvious that we were finished and the man’s intention was to be helpful and make the experience easy for Eric. I worried about the picture for four days when I decided we had to go back and get a new, correct photo ID. It was the day before our flight. I really was persistent. I had to go in a special line to get what felt like, a Papal dispensation, to get a new ID in such a short time span. I convinced the person that with airport security being so tight, and this being our very first flight in 5 years since Eric’s accident, I was afraid we would not get on the plane. The man made me promise NOT to shave Eric’s beard and then come again for yet another new photo ID.
Eric was getting restless from the wait. When we had to keep repositioning him in the spot to take the photo so his head was in the center, he lost it and did a full blown, loud wild thing. The ID photographer quickly took 3 shots once he calmed down. Even on the best of the three, he looked tired. Then he had to give a signature. At this point in time, Eric is not yet able to write. He drew a line; that’s what appears above his name on the corrected photo ID. I fully understand why the first day, the gentleman wanted to expedite things for us; but I really felt we needed a true photo and we got one.
There was one other big concern to work out before we could fly to Norfolk, Eric’s wild thing. When Eric gets upset or hurt, like if you accidentally bump him or if I’m wiping his face and I accidentally pull a beard hair, or he hears something that he thinks is unfair, and he’d like to make a comment, he does the “wild thing.” Now that consists of thrashing his arms and legs about, somewhat like a baby’s startle reflex, while yelling at the top of his lungs.
So what Eric and I had to practice for weeks before we got on the plane, was how not to do the “wild thing.” So if something started Eric’s wild thing, I would say, “Pretend we’re on the plane, how fast can you be a man?” That was a question his younger brother Joe starting using months before, and previously, in about 30 seconds Eric would point his left thumb to his chest, to indicate, “I’m the man”, and stop. With much concentration and practice, he got it down to where he could stop in one second. If he didn’t stop right away it was harder to stop. Wild thing only once in Lancaster, in lobby first night, no seat belt, felt unsafe, perhaps largeness of the lobby????
There was something else very real to consider. Although it may sound funny, and I played up the joking aspect of it, but what if there were hijackers on the plane? There is a Navy base in Norfolk. So I said to Eric, if there were hijackers on the plane, and you started doing the wild thing, who do you think they’re going want to shut up first? They’re going to come over and shoot us both. He gave me thumbs up and agreed. Sometimes if he would start a “wild thing,” I’d say, “Hey! The hijackers are coming,” and he’d laugh and stop. I had no intention of ever using that tactic once we were actually on the plane. He seemed to have self-control on the “wild thing” down to a science.I tried to think of everything during those weeks…
Rodney would be driving us to the Philadelphia airport. When he came to pick us up Joe and I were bubble wrapping the last few aromatherapy bottles I needed to pack in the suitcase for my talk. We only left 15 minutes later than the planned 6 a.m. There was so much to do that we had to get up at 4 a.m. Eric had to be finished eating at least a half hour before we were to leave, so the bouncing wouldn’t effect his digestion. Fortunately Eric did not yell too often on the way there because, even though people complain about the Schuylkill Expressway, the ride was not nearly as bad as Route 222. I sat in the back with him, on a ledge that runs along side the window, as I always do. That way I can lay over him for the rougher bumps and help absorb the force.
When we get to the Philadelphia Airport with my 5 bags and big purse, I remember being told “only 2 bags per person”. So that meant I had to carry the food bag, my purse, and push Eric’s wheelchair through the terminal, but that was OK – it had a big strap on it. I had already printed out our boarding passes online the night before, had our ID’s in a manila envelope, so I had everything ready to check our bags at the curb side check-in. As the skycap took our bags, Rodney, who had to leave, said, “Call me when you get down there to let me know that everything went safely.” I thought, Rodney is such a wonderful friend to us. (We actually met Rodney for the first time in 2000 when he was the wheelchair van driver when I took Eric from the nursing home to the movies for the first time. Eric could barely move but I “knew” he enjoyed Space Cowboys.)
Anyway, as I saw Rodney turn and go, I lost my confidence for a minute, and said to myself, “Diane, are you brave, or are you just plain STUPID? We head toward Security, to go to our gate, there’s just a few people in line, and this man in Security keeps pointing to his left, to the exit. And I keep saying, “No, no, we’re going on the plane,” and I must’ve said it 5 times before he finally said, “People in a wheelchair go to the exit.”
OK. So we go over to the exit. This is one little detail that I did not ask about and no one told me about. When you’re in a wheelchair, you go to a different place to go through Security, and the check is different. That makes sense. I understand that. We could be fakers/hijackers. Eric does have dark curly hair a beard. I’m often mistaken for Jewish or Italian…. Two young men and an older woman come down with walkie-talkies and they wheel Eric away from me. They start to take him in another section of the airport, I mean like about 25 feet away. I’m saying, “Hey, he’s going to get upset; he’s liable to fall out of his wheelchair.” Other than that he is in a wheelchair, Eric looks fine, except for a slight R eyelid droop and eye drift to the right. You wouldn’t know that he could get upset and thrash around and do the “wild thing”. They agreed with me quickly enough that Eric did not get into full -blown “wild thing” mode.
Next, they took Eric’s shoes off and away to be x-rayed. I was not allowed to remove his shoes. They asked for my shoes and wanted me to sit on the floor and stick my feet up in the air to scan them and I said, “Can’t I just bend over and stick my feet out backwards? She said that was a very good idea. I’m thinking, “I’m just too pudgy to sit on the floor with my feet up in the air. Besides, this floor has international dirt that I’ll be carrying on my pants!” They took my shoes, purse and food bag to get x-rayed. Then one of the young men with gloved hands, patted Eric’s entire body down; patted and checked underneath the wheelchair and did a physical inspection of the whole chair. (I can’t imagine what would have happened here, if Eric’s photo ID didn’t match his present look. With this complete check, I was very glad we went through the trouble to get the second photo ID.) All of the security process made sense. The security people were very pleasant yet remained professional. It’s just that we were a little shocked. Now we know what to expect.
Luckily our gate was B1, just a short distance. When got there, we only had 15 minutes until boarding, so we barely had to wait. When in a wheelchair, you’re first on the plane, but last off. I wheeled Eric up to the cabin door. A woman brought the special chair and two male airport staff came to help me. They said, very welcomingly, “We are here to help you. Just tell us what you need.” I decided to stand Eric up, and they removed his wheelchair, and replaced it with the aisle chair, and I sat Eric down. Navigating the turn to get to the aisle from the entrance was very tight. Eric had to hold his weaker right arm across his body with his left arm. I stood him up and they guided his butt into the seat. It went well. In the meantime his wheelchair was tagged and placed in the cargo bay.
The flight was to take off at 10:00 and arrive in Norfolk at 11:18. Most of that time was spent waiting to take off. The actual flight was short. Eric was perfect—he didn’t do the “wild thing” at all. I did worry when the passengers were being loaded, because his elbow stuck out to the side and his long leg was in the aisle. I’d have to say, “Bring it back in, bring it back in,” so he wasn’t tripping anybody walking in and also that they weren’t hitting his elbow with their suitcase. Eric’s legs are so long, that the toes of his left foot actually touched the back of the last seat in first class. Fortunately the seat was empty.
The flight went great and the landing was soft. We were the last people to exit, doing the reverse of what we did when boarding. Everything goes smoothly. Our wheelchair is right there at the cabin door when we come out. An older black gentleman, medium build, very attentive and welcoming, is the skycap assigned to escort us the whole way to the baggage claim.
It’s a very long walk till we get our bags. During the walk the skycap talks to me about Sun rider vitamins and how I should take really good care of my back because he saw how much lifting I do. When we finally get there; our bags are the only ones left.
A major concern when making preparations for this trip was getting from the Norfolk Airport to the Sheraton Waterside hotel. The hotel gave me the number for Airport Express. I described the situation, and the woman said, “Call back on Thursday and talk to Clarence, he’ll be working the day you arrive”. When I described Eric’s condition to Clarence and that he was 6ft 2in and weighed 160 lbs., Clarence said, “We can get anybody into our van, we have gotten totally paralyzed persons in our van, not to worry. I’ll have a big strong person there to help. You just come out of door #3, walk about 25 ft to the left and you’ll see our terminal”.
Just as Clarence had instructed, we go out door #3, and easily find the Airport Express terminal. The skycap stays with us. I state our names and ask for Clarence. A sweet southern gentleman comes out of the booth and says ‘I’m Clarence”. Clarence is 5ft 2, weighs about 120 lbs. and looks about 60. He is very fair, with graying strawberry blond hair, and sky blue eyes. I said, “ Remember I spoke to last week”, and described our story. He says, “Yes I remember talking to you”, pensively,with his pointer finger on his chin, he says, “We’ll get him in the van some how.” His assistant is a small woman. The van driver is another nice southern man, named Harry. He looks about 65, as it turns out, he’s 75, somewhat stocky and about 5ft 7. He keeps asking me, sounding almost panicky, “Am I suppose to help you get him in the van?” I didn’t see anyone big and strong in the vicinity.
The van is not just any van. It’s a very tall, large van. The part where you would step onto the van is at the height of my thigh, I may be only 5 ft, but that is still a very high step. Luckily our wonderful skycap stayed with us and offered to help. I get Eric out of his wheelchair and pivot him to sit his butt on the step. The skycap goes inside on the seat and starts to pull Eric up from under his armpits; I’m pushing him from the front, as his chest is sort of leaning on my face, once Eric’s butt is the air somewhere between the step and the seat, I ask Harry to place Eric’s left (stronger) foot onto the step. Eric immediately pushes himself the rest of the way to the seat. At last we are successfully in; what a sense of accomplishment!
We are so comfortable. This is such a luxurious cushy bench seat. Eric is now enjoying the best ride he ever had. No bouncing in his wheelchair. It’s a beautiful sunny day and we enjoy the 25-minute ride to the hotel. Harry tells us about Norfolk. I ask him how we might be able to get to the beach. He tells us it is 25 minutes in the other direction.
Originally I thought the Sheraton waterside, meant it was on the beach; it is on the riverfront. We get to the hotel and two bell men cheerfully come right over to help, as if it is a perfectly normal event to help a wheelchair person jump out of a van. They wanted to help us! We do the reverse to get out of the van. One bellman goes inside and we turn Eric towards the door. Eric kind of leans out on my shoulders and the bellman is supporting me from the back. As Eric lifts his feet off the step of the van, he’s kind of in the air for a few seconds, with most of his weight on my face and chest, and I’m saying, “Haven’t his feet touched the ground yet? I can’t see, because my face is in Eric’s chest. The bellman guides Eric’s feet to the ground, then helps me walk Eric to his wheelchair. Whew!
We go into the hotel and everything is in order. I don’t notice the room number on my key because the bellman is doing everything for us as; all I have to do is push Eric in his wheelchair. We’re in room 601. The same room number that we had at the Lancaster Host. I thought, “This is a sign from heaven that everything will be alright.”
The room is spectacular. Once inside the door you go down a 10ft hallway, turn right and there’s an area for luggage and hooks and hangers for clothing all at w/c accessible heights. On the opposing wall, a wide full-length mirror and the entry door to, a 15 ft x 8 bathroom, with a very large roll in tiled shower. The bed appears larger than king and ends up being the most comfortable one I ever slept on.
Across from the bed is an 8 ft cherry wood looking desk that the seat of wheelchair can roll under, facing a wall length window that overlooks the river. Next to the desk is the area where a very nice man from housekeeping places the room refrigerator and microwave. Still further in, at the far side of the bed, there’s an alcove with 2 Queen Anne style chairs with a large round table in the center and a floor lamp behind it, also facing a large draped window.
We had to get settled quickly so I could feed Eric. He hadn’t eaten since we’d left the house at 5:30 and its noon. He was hungry. The alcove is deep, and the rear wall is really windows, so there isn’t a wall that I can lean the back of a chair against, so I push it so the right side of the chair flush to the side wall, and I put the round table partly behind the chair. I transfer Eric from his wheelchair to the bedroom chair. (He cannot eat in his wheelchair because the back is too low to support his head and not enough firm support. This is only the 3rd week he’s been sitting in a chair to eat.) At last he’s eating. Things are going well. Eric has this tendency to push hard on the floor with his left foot, which makes chairs lean backward. So he suddenly pushes back really hard with his left foot. The chair back knocks the round table forward; the table catapults the open container of weight gain pudding sailing through the air till it lands food side down on the rug. So we’re there 10 minutes and now we have this giant glob of Weight Gain on the rug. I call Housekeeping and say, “We just arrived in room 601 and I spilled a great big glob of pudding on the carpet. I’m going to need some help to clean it. I figured they would have special carpet cleaning chemicals. So the same really nice man who brought the refrigerator comes in and cleans it up. OK, there’s our first impression. We’re here 10 minutes and we have to call Housekeeping
Eric ate very well and I moved the table so that wouldn’t happen again. I put Eric to bed to rest. One thing I did try at the Lancaster Host was leaving him for 15 minutes. Eric gave me thumbs up to do so and enjoyed the peace and quiet. So I ran downstairs to quickly register for the conference, and check to see the status of the roll away bed. It was already in the convention room. Eric was asleep when I got back.
The first of two evening presentations didn’t start until 7 p.m. Since we arrived at the hotel at noon, we took time getting used to the room, relaxing, eating and watching TV. Just before 7, I wheeled Eric to the convention room, transferred him onto the rollaway bed in the back of the room and sat next to him. Halfway through the first talk I saw that Eric was too tired to stay. It had been a long day full of mini adventures. We went back up to bed and would start anew in the morning.
There were six presentations on Friday. I was going to try to get us to four of them. With two morning showers, feeding Eric and eating salmon and pumpernickel for breakfast in the room, we simply could not get to the 9:00 am lecture called “Aromatherapy and modern day plagues”. (That’s the advantage of having all the presentations written in the proceedings book.)
We did get to the 10 a.m. talk on trademarks, which was somewhat disappointing, but Eric was a trooper, and rested very well on the roll a way bed. We then went back to the room for another feeding. (Back on the chair in the alcove, but without sling shooting any food.)
We arrived at the roll a way bed just in time to see Katerina Svobota begin her slides on the therapeutic benefit of lemon-scented plants. It wasn’t the topic but the person that I really wanted to see. At my first aromatherapy conference as PA director, I happened to be seated next to Katerina at an open panel discussion. She mentioned from the audience, that she worked for the department of Agriculture in Scotland. As part of her work, she had tested 27 gensing capsule products and found that only four had any geinsing; the others had caffeine. Of the four, only one had the standard amount listed on the bottle. (Shocking?) We got to talking at the break, she gave me her business card and I was so glad I met her. Her fascinating photos of the secretory trichromes of several essential oils were published in the proceedings book for that conference. Later that year, 1998, my article, “Aromatherapy: More Than Just A Nice Smell, was about to be published in the Pa, NJ, DE issue of Nursing Spectrum. I remembered those photos and called Katerina in Scotland to see if I might be able to use one for the article. She immediately said yes! Although I had sent her a copy of the publication, I had not seen her since.
When she finished her lecture I waited in a long line to get to speak to her. The president of NAHA, Cheryl Hoard, sat with Eric. Even though I could see him from where I was standing, this way he had company. She remembered the situation right away; but asked me about Eric. I try to be brief about it, so as not to upset people. I quickly told her had been a passenger in a car accident, had been in a coma and a nursing home, but that he was home with me and this was our very first airplane trip since. She looked emotional and said, I have a son near his age. She again, gave me her card and said if I ever need anything from her to just call. The people in Aromatherapy are almost always that wonderful.
Back to the room and our routine. This time after feeding Eric I wanted something other than salmon and bread for myself. The maid was just starting to clean up in our room, so I asked her and Eric if they minded if I quickly went downstairs to one of the restaurants. I never saw or was seen by any waitress in either of the 2 restaurants. I went to the gift shop to at least get a snack and it was “closed for lunch”. I get back to the room am I’m hungry and grumpy. Two things that aromatherapy cannot replace are, food and sleep. I called room service and told the man what had happened; he apologized in disbelief and sent me the special fast, and at no charge. I couldn’t eat quickly enough, and get Eric and I ready to go to the next talk. As I rushed around, and rushed Eric, he started to the wild thing.. He yelled so loud in the hotel room. I finally had to say to myself, “Hey, we are just not going to be able to get to this one”, and comfort Eric, I realized that as busy as the conference could get, I had to keep an even comfortable pace for Eric and myself. My own presentation was the next day.
The presentation we were missing, was by Jade Shutes, the immediate past president of NAHA, someone I liked very much and wanted to see. I met Jade at a conference in Boston that she had organized in 1996 called Synergia. She was speaking with panelists debating different views of aromatherapy. Jade seemed to ooze with sweetness and good. She was so mannerly and dignified in her method of defending her position. The debate that day seemed like a combination of “my oils are better than your oils” and intuition verses chemistry, which was exactly what my own talk was going to emphasize. “Not that we don’t need science, but that a rose will smell as sweet whether or not we know why. Knowing why it is not a prerequisite for the enjoyment of the aroma. If science is your king, then I hope that intuition is as least your queen.” I remember thinking at the time.
A very small faction within the NAHA organization seemed to have a problem with Jade. There had been a series of unpleasant, vaguely accusatory emails that never made sense to me. I would email her occasionally with supportive inspirational words when I could. For all those reasons, I had wanted to show support to her by Eric and I attending her lecture. It was not possible.
We did make the next lecture, John Kerr’s very interesting slide program about how well received and effective aromatherapy sessions were for patients and staff in a dialysis unit in a Sidney, Australia hospital.
Friday evening was the dinner celebration. Eric’s bed was next to the wall about five feet from the table where I would be seated. The dinner went great. I got up every five minutes or so, to check on Eric and make sure he did not feel lonely. He was fine, and I knew he wanted me to enjoy myself. Eric had always been a considerate child and adult, and he still is that way.
Jade came to the table and asked to meet Eric. She said she was sorry she didn’t come over sooner, and I told her how we had wanted to get to her talk, but it just did not work out.
Eric and Jade seemed to have an instant connection. The way they looked at each other really moved me. Eric’s right eye doesn’t always fully open, and he opened it wide as he looked at her. She asked me what happened. Again I briefly said, “He was a passenger in a car accident, was in a coma, …..but we have a lot to be grateful about. Jade said, “In one second his whole life was changed,” and started sobbing, almost uncontrollably. “I can sense him,” she said. “He is such a sweet soul.” She continued to sob. I hugged her and tried to console her. She was so thin; I felt the bones in her back with my hands. Once composed, she sat with Eric on the side of his bed, holding his hand and stroking his arm as she spoke to him. I went back to the dinner table. I was so happy that someone as pretty and sweet as Jade, had such a special connection with my Eric. I heard Eric’s voice and looked over to see him looking into Jade’s face and saying, “I love youooo.” That was big!
Eric almost never even utters a word. Mothers’ day 2001 we were watching the movie, Stepmom with Susan Serrandin and Julia Roberts. The part where they both are worried about how her daughter will feel after Susan dies; Susan about whether her daughter will miss her and Julia about whether she’ll be accepted as her stepmom. It’s a very emotional scene, if you haven’t seen the movie, it’s hard to fully describe the emotionality. Eric turns to me, and speaks his first sentence, very clearly but slowly,” Mom I love Youooo.” I cried with ecstatic joy from the precious mother’s day gift he gave me. It was another year till he said it again. Although he has said it to me numerous times since then, he has never again said it as clearly as he did that mothers’ day... Eric can say, “yeah, more, no, hi, and the vowel sounds one at a time, not in sequence, a,e,i,o,u”. He never initiates words, except “I love you mom.” So this was really big.
Jade stayed with him for about 20 minutes, and then said she would mix a special aromatherapy formula for him. She also said she would come to my talk the next day to help me. What an evening! There was a program after the dinner with renown aromatherapist Michael Scholes, but Eric was tired, and I wanted to be well rested for my own talk at 11:30 a.m, the next day, so we went back t the room so Eric could eat again before bed. (He needs to be fed 5-6 times a day to get at least 2000 calories.)
When I first found out the proposal for my talk was accepted, there were only two sessions scheduled at the same time, only two choices. Since then there were three talks in every time slot. People singed up in advance; the one about infused herbal oils was already full, mine had the least number of persons signed up. That had me a little nervous. There was a lot to do. I had to get Eric, myself, and the room ready for my presentation. Chairs had to be removed from the front to make room for Eric’s roll a way bed. The director of the volunteers was there to help me.
Eric was comfortably in the bed, and all was ready. Jade came and spent the first 20 minutes of my two hour presentation massaging Eric’s feet and legs with the special formula she made just for him. She said if she lived near us she would give Eric massages at our home, but she lives in Seattle. About 30 people actually came and I started telling my Serendipitous Stories. Everyone was mostly quiet, except for the funny parts. Eric had heard all the stories many times before and had lived through some of them. When a funny part was coming up, Eric would start laughing a few seconds before the story. As it turned out, people loved my talk. They came up and hugged me and said that I had inspired them. I was soooo happy. Things were going so well and I was very glad that I took a leap of faith and brought Eric to Norfolk. The director of volunteers helped me pack up and Eric and I went back to the room for feeding and needed rest. I told Eric how proud I was of him and we were both feeling very pleased with ourselves for how everything had been going.
We did not go to the two remaining lectures, but instead went to the trade show in the auditorium. There were exhibitors from Brazil, Japan, England, Australia and the U.S. Outside was Jeff Hoard, Cheryl’s husband. He offered to help me walk Eric. Eric had not had an opportunity to walk since a few weeks before Easter. We had lost our helpers. Our dear friend, John who had been coming 4 evenings a week, hurt his neck. (Not while helping us.) A fantastic chiropractor friend who had been coming every Thursday morning for two years, was taking on another volunteer project that was also going to be on Thursdays. As upsetting to me as this was, on some level I knew it was supposed to be that way. During this time period Eric was getting better other ways….eating while sitting in the chair, traveling etc. When I told all this to Jeff, he and his daughter offered to help us. Eric walked 17 feet out side the trade show, and then needed to rest. His record was one hundred sixty feet, at the time when we had more regular opportunities to walk. Jeff said he would gladly help us again. The rest of Saturday we relaxed in our beautiful room continuing the feeding routines.
Sunday morning we skipped the last two lectures, and instead leisurely did our morning shower, feed, change, etc, not confined to a schedule. As the conference was ending, we went back to the trade show area one more time to look for Jeff. He helped me walk Eric again and this time Eric walked 67 feet before he got tired! Cheryl was cheering him on. The further he walked, the more Eric’s quality of steps improved. Eric and I sat outside the exhibit area with Jeff for a while, and two different very pretty young girls came over and asked if they could meet him. The first was from Hawaii, a place we had always wanted to go. When Eric was little and would have a fever, I would pretend we were going in a plane to Hawaii, till his fever came down. She told us a lot about where she lived, like that she lived on the beach, and her shower was outside. She held Eric’s hand as she spoke. The other young girl was from the U.S and asked a lot about Eric’s circumstances. This was the first time Eric had this kind of attention from young persons. I was so happy for him. (His friends stopped visiting a long time ago, as often is the case, in situations like ours. His former girlfriend and driver of the car, still comes, though, at Christmas and his birthday, with her mother we see more often.) I think he felt more alive and more a part of life since our trips than he ever has since the accident.
I thanked Jeff and Cheryl for making this all possible: we hugged and said our goodbyes. (They live in St. Louis.) The conference was over. They actually thanked us for coming, saying we were an inspiration to the conference members. Just then the director of volunteers came up to us and said,” Everyone loved your talk”. In fact, you and Eric inspired a healing. Saturday night was the NAHA official meeting. Jade and some of the people who were having problems with her, made up. They said that Eric’s presence at the convention helped them put into perspective what was really important. They even took a group photo. To hear this was very emotional for me. While being grateful for all that had happened for Eric and I, it never occurred to me that his presence had an even greater purpose for others. Who knew that as much as Eric liked Jade, that his very presence would actually help her. Also, the director had been taking photos during my presentation. One showed me talking, with Eric and Jade in the background. There was a classic photo of Jade massaging Eric’s feet that seemed to embody a true healer relationship. It was enough to bring me to tears. You could feel the love in the picture.
We basked in the beauty and joy of these precious good feelings. For a moment, I felt transcended beyond the pain, the agony, the hard work, the frustrations and the obstacles that sometimes come our way, to a place where I could remember my own underlying belief, that things really do happen for a reason, and that it is a privilege to travel with Eric on this sacred journey…..
On Sunday afternoon, as conference attendees were preparing to leave the hotel, I was looking for a way to get us to Virginia Beach. The past four days were all about aromatherapy, the conference that I wanted to attend, and my talk. I wanted to do something that was just for Eric. A Towne car taxi driver in front of the hotel said he could not take us, but he had a retired friend who might. I explained that I would need help, getting Eric in the car, and that he had not been in any car since the accident. He called his friend and told him about us, and he agreed to take us the 25 minutes to Virginia Beach, wait with us, and bring us back for $75!
Richard, the driver, was also 62. We experimented by parking the wheelchair about 5 feet away from the car. There wasn’t enough room to put the wheelchair right next to the door, because Eric might hit his face on the door or his head on the roof of the car, as I would stand him up. So Richard helped me walk Eric to the door, turn him around. At that point I held Eric standing while my back was against the car door. Richard went inside and as Eric bent down, he guided Eric’s butt to the seat and made sure I didn’t hit Eric’s head on the roof of the car. We helped Eric turn and get his legs inside (We had already pushed the front seat all the way forward.) Eric and I leisurely rode in the backseat of the town car. This was the first time Eric rode in a car sine 1999!!!
When I first arranged for the ride, it looked like it was about to storm, I wanted to go anyway, because I just felt we had to go. As we were driving to the beach, the sun came out and the storm went away. We get to the beach. Richard finds a close place for us to park. We get Eric out of the car the reverse of how he got in, and Eric does very well walking with Richard and I. We take Eric in the wheelchair onto the boardwalk, and go down a ramp to the sandy beach. We struggle to schlep Eric’s wheelchair through the sand. The wheels sink into the sand about 5 inches. It’s hard work and Richard helps me. When we’re in the middle distance between the boardwalk, and the beach and a lady comes running up and says, “In the next block, there’s a wheelchair-accessible ramp that takes you right down to the water.”
So we schlep Eric back through the sand, up the ramp to the boardwalk and go the block to the special ramp. We were able to get Eric about 15 feet away from where the waves came in. I decided not to take him to put his feet in the water because he had his leg splints and special shoes on which he needed to walk to and from the car. They are very hard to get on and I was afraid the sand and water would ruin them. So he was at least on the sandy beach, looking at the ocean. We hadn’t seen the ocean in at least five years. It was breezy and the wind kept getting stronger. After about 40 minutes, it began to look like the storm was coming back.
I took off my shoes and went in the ocean. I had a short, little dress on; the wave water came up to my thighs. I didn’t care; it felt great to me, not even the slightest bit cold. I scooped water up with my hand to put in Eric’s so he could at least touch the ocean water. Our driver, Richard, who stayed with us the whole time, took pictures of Eric and I with my camera phone. I had gotten a new cell phone right before we left, that had picture-taking capacity but I didn’t know how to use it; I forced myself to learn right then. We took 50 pictures of Eric on the beach and they’re in the phone! By this time Eric is exhausted from everything we’ve done.. You can see how tired he looks on some of the pictures. We schlep Eric back and once again he has to walk to the car. We get him in safely again. Not only did we get to the beach, we learned that Eric doesn’t have to ride in a van anymore! As long as there’s at least 18 inches of leg- room in the back, he can ride in a car. As we left the beach area, the storm came in. It was as if it waited just long enough for Eric and I to enjoy the ocean. What a wonderful finale to our trip.
Richard gave us his business card with his email address on it. I promised I would send him some pictures via the internet, even if it took months till I figured out how to do it. (I finally sent them in August.) We spent the last night in our luxury room relaxing. Eric fell sound asleep at 8 p.m., immediately after I had positioned him in the middle of the giant king bed. I had to wake him at 4 a.m. so we could be fed, completely ready and downstairs for our 5:30 a.m. ride to the airport. I originally made plans with Clarence that a van would pick us up. I had also arranged with the night shift bellman that he would help me get Eric up into the van. Luckily, a Towne Car arrived instead! The bellman helped me everything went well. The driver was a thirtyish man, who was nice but not all that happy. When I told him how great every one was, and how we loved Virginia Beach, he quipped, “You wouldn’t think so if you lived here.” He plainly said he did not help people get in and out of cars. He was the driver. So I wondered, not too anxiously, how I was going to get Eric out of the car once we got to the airport. The driver gets Eric’s wheelchair out of the trunk, and I start to tell him what little help I would need. He does not want to help us. Now it is still dark out; but a man in line hears the conversation and he helps me! All went well. We did security and got on the airplane no problem. Once we were seated, being the first to board, the roof started leaking. It had to be fixed before we took off. So while everyone else waited at the terminal, we were comfortable in the same seat location we had on the first flight. The wait is an hour. Eric was very patient. The entire plane had only one empty seat, next to me. Eric was at the aisle so his left foot would not have to be constrained during the flight. It was a long tedious boarding. I had to frequently remind Eric to pull in his arm and or his leg as the passengers went by him with their luggage. There were two last people boarding and I must have looked away for a second, and Eric went into a full-blown wild thing. I think one of them must have hit his forearm or elbow with their suitcase. There was no stopping him. The rest of the passengers were completely silent as they watched Eric. He eventually stopped. Of course the very nice stewardess, who was offering us water and coffee, while we initially waited, was still very nice and asked if she could help. Needless to say, I did not say, “The hijackers are coming.” I think Eric really did marvelous. He did the wild thing only twice in five days, where at home he does it 4 or 5 times a day. He was tired.
The rest of the flight he was perfect. We got off the plane the same way. Our chair was right there; and once again the flight staff said, “We are here to help you, tell us what you need.”
When we got to the baggage claim we waited only a few minutes for Rodney. The ride back in the van was much worse than on the way down. Eric yelled more; after all he had been riding in Towne cars, on a real seat. We had a lot to ponder when we got home. What a trip. I went to Norfolk to give a talk on Serendipitous Aromatherapy, and as it turns out, the entire trip was serendipitous! More so than ever I thought. When the next NAHA Journal was published, there on the inside cover was the beautiful photo of Jade massaging Eric’s feet while I was speaking; the caption underneath read, “Serendipitous Aromatherapy”.
Next: A Philadelphia Convention
Now it just so happened that 16 days after our Norfolk trip, Wednesday, May 19, 2004, I was scheduled to speak on Aromatherapy, and teach Aromatherapy Hand Massage at the Geriatric/Psychiatric Nursing Convention, held at the Adams Mark in Philadelphia; as an exhibitor I would sell my products Thursday and Friday. This was historically a lucrative venture for me.
My sister in law Robin, the only one who I can trust with Eric for all day, was able to stay with Eric only on Wednesday. She was still struggling to get the house where she had just moved, into a livable condition. It had been vacant for over a year. I started thinking that maybe I could take Eric. He agreed to try sitting in a high back chair next to my exhibit booth. The coordinators would provide me with one night’s complimentary room, in addition to the honorarium. The exhibits were only open a few hours each day, with breaks when the classes were in session. My nurse friend Rhoda had already planned to help me at the booth. So I called the coordinators, and they said I could bring Eric. We were going on yet another trip! We reserved a wheelchair accessible room, and a Queen Anne style chair would be next to my booth. Now that Eric can ride in a large car, I rented a Buick Le Sabre for only $52. I spoke the first day; came home that evening and got us ready. Rodney drove us to Philadelphia at 10 p.m. Eric relaxed in the back of the rental car with me, and did not yell once.
The wheelchair accessible room did not have a roll in shower. It did not even have support bars in the bathroom. The only thing that made it different from any other room, was that the bathroom door had been removed! Wheelchair accessible rooms are not created equal. It was back to bed baths for Eric.
The next morning at 6 a.m. Rhoda and I set up the exhibit booth while my long time nurse friend from grade school, Connie S, (who just happened to be at the conference,) stayed with Eric. I came back to the room, fed Eric, did our routine morning care and then took Eric down to the convention hall. Eric was able to sit very well in the Queen Anne chair but was definitely tired by the time each break occurred. Rhoda stayed at the booth while I fed and cared for Eric during the breaks.
Nurses who had heard me talk about Eric during my previous lectures at this conference, came up to him and said things like, “Eric. I’m so happy to meet you. I heard so much about you. You look wonderful.” It would get crowded around the booth, as people were busy shopping and asking questions. Eric tolerated it very well, and never did the wild thing. We had yet another inspiring time!
Eric was more exposed to the general public at this Philadelphia event. In the small Lancaster hotel, he quickly became known and cared for by everyone. At the large Sheraton Norfolk, again, was known and appreciated by the participants and the hotel staff. At the Adam’s mark, although protected and cared about by the coordinators and participants, he was unknown to the hundreds of hotel guests and attendees of other simultaneous conferences.
I was in line getting lunch and Rhoda must have made Eric laugh. When Eric laughs or makes a sound, it is a high pitch, siren like tone. As his laugh echoed loudly through the convention room, I overheard one of the caterers who did not see Eric on the other side of the exhibit curtain, laughingly ask if that was some kind of siren. For a brief anxious second, I wondered what it would be like to take Eric where we were not known to anyone.
No matter what, in just 42 days we learned that we could ride in a van or a Towne car, manage to stay safely in 3 different hotel situations, and go to the airport, and fly safely on a short plane trip. We only went on 2 more trips.
Rodney, our beloved WC van driver, dearest friend and “big brother” to Eric drove us to Atlantic City, which was certainly further than Lancaster or the Philadelphia Airport. I rented a Buick so Eric would have room to stretch out, but we still had to stop every hour and get Eric out of the car, stand him up and walk him a couple of steps, and then lay him down in the back seat to rest for several minutes, change him and then sit him up again. We made it there OK and stayed in a gorgeous room at the Tropicana. I did not know that the slot machines were not one armed bandits anymore, but push buttons. Eric didn't have the fine motor skill to play directly, so I played for him. We didn't win but Eric enjoyed the excitement of being there. Eric was very tired and fell asleep by 7pm. The next morning we took a short visit to the beach and then home.
I was invited to speak on Aromatherapy and Color Therapy at an AACN conference in Ocean City MD following April 2005. Rodney drove again and we did the same get out of the car routine. It just happened to be 84 degrees and sunny! We stayed at the Castaway Hotel. Since it was off season we got a corner room with a balcony and 180 degree view of the ocean. Eric and I could even see the ocean from our bed as it was reflected in the dresser mirror!
Rodney drove back to his home in Reading, and returned early am to take care of Eric while I presented my talks which were in the morning. The coordinator of the event arranged with the police for us to borrow a dune buggy style WC to take Eric on the beach. It would not fit in our rented car, so Rodney took a bus to get it for us. We were able to easily push Eric over the sand . The chair sat up high on big inflatable wheels and since it was so warm (not the water...I loved it ..I'm always hot) we pushed him into the ocean up to his his sneakers. The ocean waves were strong and I got scared we wouldn't be able to get Eric back out...but we did! Rodney is strong!!
Eventually Eric started having seizures. After that I became afraid to take him anywhere far from home.. We sure did have some wonderful trips and we'll always have those memories.!! He still had Aquabilities, where he went for pool therapy two times a week,which he loved more than anything. It was only 20 minutes away!
Over the next several years Eric had seizures intermittently, going for 2 years, 3 years seizure free, then having one every 3 months and then not. But that's another story!
Things Are Rarely What They Seem.
How being diagnosed with a heart attack led us to the perfect house.
Ever since Eric's accident in 1999, I had not seen a Doctor or had any kind of checkup. Family and friends would gently remind of that fact. It was 2006 when I saw the full page add for a Diagnostic Trailer at CVS that would perform EKG, Echocardiagram, Carotid Ultrasound and more, I went. I did not expect to be diagnosed with a heart attack. “Anteroseptal Infarction, probably old”. I read it off my printed EKG that was laid on a table next to me.
Stunned with shock I went home and quickly googled Aneroseptal MI “carries the worst prognosis of all infarct locations, mostly due to larger infarct size.” That was enough. I tried to stop thinking about. I had things to do. A few days later the official reports came in the mail, Echocardiogram “small pericardial effusion, trace mitral regugitation” My carotid ultrasound was normal. That was comforting!
I figured out when it probably happened. December 19, 2004 Eric had a seizure while sitting in a chair. He had a wide stare and a sudden large amount of drool. When I got him back to bed he did not help at all .Almost immediately he had a horrific grand mal siezure. I called the ambulance and the paramedics came quickly. He was admitted to ICU and stayed there several days. Then a really good thing happened! Because he was admitted and not just in the ER, he was eligible for more rehabilitation. He was discharged directly to rehab which was in the same building.
The month he was there I went over every morning before 6 am to make sure he had clothes on, to take his blood pressure before they used the automatic cuff, to see his doctor and to feed him breakfast which was often there by 7:30. There had been a lot of snow, close parking was at a premium, it was bitter cold and I was tired.
At home Eric slept in a queen size bed, and at that time he could not adequately move his covers in bed so when he turned on his side he would get stuck in the covers. He fell out of bed once when he was stuck in his quilt. In the single hospital bed, being 6”1” he couldn't turn all the way on his side without his head rubbing against the side rails, so the cover issue was more pronounced. At home he slept in sweat shirt and sweat pants to stay warm.
I had asked that he not sleep in a hospital night gown but in the sweat clothes I had in the chair next to his bed. His bed was on the window side of the room and it was colder on that side of the room. When I came in the next day he had only a diaper on..no night gown or cover and his clothes were still on the chair. I started staying at night long enough to get him in his sweats for night shift.
Eric couldn't tolerate the squeeze of the automatic BP, and would moan and start to do the wild thing and they couldn't calm him down. He only needed his BP checked once a day, but it was to be done before the Doctor made early morning rounds. That's why I took it manually.
Eric lost weight in the ICU. He weighed 152 lbs when he was admitted to rehab. He weighed 172 before the seizure. A very young speech therapist would not allow him to be eat since he had the history a Traumatic brain injury and because of his aspiration during the seizure. I had been feeding him thickened liquids, baby food and even had a prescription for ensure w thickener prior to the seizure.. She finally allowed him to be fed on the 7th day. So I fed him all his meals, which meant a lot of back and forth.
Whether its a trauma center, nursing home, or rehab, there is always a potential for good things to happen, and also for details to be lost or confused in whisper down the lane communication. As Eric stayed there longer and more people knew him things got better.
On one of those early mornings, a sharp burning pain radiated from my L clavicle across my throat to my right ear; I felt faint. I laid down next to Eric in his bed and prayed “Please God, don't take me now.” I didn't remember anything until his doctor came in to make rounds and woke me up. That's probably when it happened. I was exhausted for weeks afterward..
Eric did pretty well in rehab. Most of the staff really rooted for him and they were very creative working with him, and seemed care about both of us. Then we got even better news, Eric was going to receive home PT 3 times a week! My excitement about his continued progress made me overlook my tiredness which eventually just returned to my normal level of tiredness.
Since twenty months( January 2005 to September 2006) had passed since my heart attack, I decided there was no reason to see a doctor. I lived through the most critical time, my small pericardial effusion was probably larger at first and was now healing,
I decided to downsize. I put my house up for sale. It sold in 55 days. Concerned that I might not find the right house in time, (I wanted a rancher with room in the back yard for a pool for Eric someday) I contacted the local hotels while the house was listed and got a fabulous deal at the historical downtown Abraham Lincoln Hotel.
December 27, 2006 we moved into a 650 sq ft wheelchair accessible suite. I was allowed to bring my own furniture, so I didn't have to put as much in storage, and was even able to continue operating my aromatherapy business there. A very long and wide entry hall way had room to store my boxes of supplies, included a mini kitchen along the wall and still had room for a desk and computer. There was a very long bathroom with a large wc accessible shower; a living room big enough for my sofa bed, tables, lamps, TV and shelves to store my essential oils. The wide bedroom fit 2 queen size beds, (one was Eric's electric bed) chest on chest dressers and chair and another TV. There huge windows with deep sills and since we were in a corner suite on the 11th floor we had views of 5th street and Washington St.
The suite was perfect and met all are needs. Plus there was daily clean linen, free supplies of everything from tissues to toothpaste and shampoo to free internet, and cable TV. And of course there was room service. The staff treated us like a King and Queen. They seemed to love Eric. It was a wonderful experience. We stayed 5 months.I rested and was able to care for Eric in a relaxed setting. We only left the hotel once a week to go for Eric's pool therapy.
.While we were at the Abe, I was identifying features that I wished we could find in a house for us. First, a bedroom that could fit 2 queen size beds. I loved being high up, looking out the windows from the 11th floor, watching from above as the snow fell, instead of at ground level. I couldn't imagine how that wish was possible. Then really dreaming, room in the yard for a pool for Eric.
Because of how great we were treated at the Abe, I had renewed feelings of hope for my home city of Reading and asked my realtor to add Reading to the search list of potential homes for us. One night there it was! A brown rancher sitting majestically above two terraces of Ivy, with tall Oak trees looming in the background like a crown. It was high upon a hill, two streets below the base of a mountain.
It was on the market three days, I was the only person to see it. There was even some room in the back for a potential pool for Eric someday! We moved in May 23, 2007. If I would not have had a heart attack, I probably would have never moved from my two story duplex and never found our house.
We were in our house about a year when I saw the add for the trailer at CVS again. I went.
This time there was no diagnosis of heart attack, no pericardial effusion. I took both EKGs to a local internal medicine doctor and got another EKG done. Once you have a heart attack the resulting electrical conduction change will always show on your EKG. I DID NOT have a heart attack! Apparently, the v leads 1 and 2 were placed too close together which altered the polarity and mimicked the heart attack. Ironically when the technician was doing the EKG he told me he was new, so I paid close attention to the v leads that go over and around the breast and didn't even look at 1 and 2. That has nothing to do with or explain that the pericardial effusion was gone. I didn't care, I was just so relieved and happy!
By the end of 2008 I began contacting pool builders for estimates. The location in mind, which was on top of a hill behind our house would not work! It was too close to the electric lines, which were in between the trees of my house and the neighbor, and the electric, phone and cable all ran through there via a right of way.
The only possible way was to excavate the 50 ft long, 14 ft high and 30 ft deep hill to flat before digging the pool. .Besides the fact that it would be very expensive, no one wanted to tackle the job. It was thought that the hill was granite, and explosives may be needed. It all became a mute point when the economy crashed. Our house dropped $65,000 below the purchase price value, and we were under water. We narrowly avoided pre foreclosure through the HARP program which I persistently applied for five times. I was notified that we were accepted on the fourth try on the day I over nighted the fifth application!
When the economy improved the house value went up to the point we were only $40,000 under water. Reading's elite poverty status didn't help. Eric and I remained grateful and happy and we loved our house! I kept the thought in my mind and heart, that someday, someway I would get Eric a pool. And that's another story!
For a few years I had been providing aromatherapy presentations for Reading Area Community College that were always very beneficial to me. So when Michele, the RN who coordinated the continuing education courses there, asked me if I would give an aromatherapy presentation to a group of glaucoma patients at an eye physicians’ group monthly patient education meeting in Phoenixville, I wanted to help her but I was hesitant. I don’t like driving far and I’d never actually been to Phoenixville. They offered to pay me nicely just to talk for an hour, and Michelle had always been great to me, so I thought, “Okay, I’ll commit to going to Phoenixville.”
There was great concern about Eric’s severely swollen, purple disfigured eyes. By Day 3 a nurse named Mary Alice said to me, “You know, Eric’s probably going to be blind in that right eye. Don’t worry too much about that; people can do fine with one eye.” She started to tell me about a patient who was blind in one eye and I immediately started to drown her out in my head. I didn’t want to hear any more and her voice became sort of like an echo that trailed in the background as I said to myself, “I’m not listening and I’m not going to believe you.”
That night a neuro-ophthamologist came to examine Eric’s eyes. It took him quite a while because he could hardly find Eric’s eyelids, but he gently opened them, carefully examined them with his tools and turned to Jackie and I and said, “I am so pleased. There’s no damage done to either eye. The retina, everything is intact.” He said, “I don’t know if he’s going to be able to see based on perhaps what may have happened in the brain, but his eyeballs are intact. There is no structural damage.” Then the doctor tells us his name, Dr. Luminae and I knew everything was going to be all right because I thought, “Luminae -- illumination! Eric is going to be able to see!”
As it turns out, the third weekend that Eric is in the trauma center I have to go give that talk to the glaucoma group in Phoenixville. It is only ten minutes away from the hospital. So I drive over to give the talk and who do you think the physicians’ eye group is that I’m giving the talk to? It’s Dr. Luminae and his associates!
Dr. Luminae was very happy to see me and the presentation went wonderfully. His associates knew who I was, knew what we were going through. Doing the presentation was fun -- even though my heart was pounding over the anxiety of wanting to get back to the hospital as quickly as possible. I was still thrilled; to me it was a sign that Eric was going to be able to see.
Three and a half years after the accident I took Eric to an eye clinic which was actually in an open large room in a hospital, almost like a lobby. We waited a long time before anyone showed up and Eric was getting very tired of sitting in his wheelchair. The neuro-ophthamologist came over and I told him the history of Eric's eyes. He took his hand and moved it from left to right in front of each of Eric's eye and in a few seconds told me that he had Left Hemianopsia.
Eric is missing the left visual field in both of his eyes. He can see out of half of both eyes. This absence of his visual fields impairs depth perception. For years I would simply say, “Eric has left LEFT HEMIANOPSIA”; only in the past few years have I been able to say the words, “He is half blind in both eyes.” It doesn't acutely bother Eric because he doesn't know what he cant see, but if you touch his face without telling him first, while standing to the left of his left eye, he will flinch or get upset if it startles him.
I had to finally face that this is one situation where faith and prayer, wishing and hoping, optimism and serendipity probably won't help. (Notice I said, “probably”.)
Why I wanted to get Eric into a pool after his accident.
Eric has had an affinity for swimming in a pool since he was 8 months old when he learned to swim underwater during the Mommy & Me swim school at Northwest Junior High School. When Eric was three, in conjunction with my in-laws, we built an in ground pool at our home which was to be the family pool for the entire Grandstrom clan. When he was 4 he saved his 11 month old brother from drowning in it.
Despite 3 adults sitting around him, Eric’s brother, Joe, crawled to the deep end edge and fell quietly in the water. No one heard a thing until Joe was crying as Eric, treading water with only his little legs, was holding his brother above water with both his hands. Eric saw Joe fall in and dove down towards the bottom and pulled his sinking brother to safety. Both boys were OK. .
In May of 2000, about 8 months after Eric’s accident he finally appeared to be in stable condition. He was able to place 2 fingers on a piano keyboard and move them when asked. This,thankfully was considered following a command, where as any other previous movements were always decried as just a reflex. He was finally accepted and admitted into a local famous rehab with a pool!
From almost the first day I begged the staff that he be taken into the heated rehab pool, feeling that it may wake him up further, help him to move, especially since he had loved the water. They said no for a variety of reasons. He did get other therapies there. And most of the staff was very nice to us but after two months he had to go back to the nursing home, and that's another story.
One of the best things that ever happened for Eric, was in August of 2000.While he was still in the nursing home, a local pool rehab, started by 2 LPN’s who wanted to have a place for special patients like Eric, agreed to have him come for an evaluation. Up to that time many professionals seemed to believe Eric would not improve, or wasn't “even in there”. He was lifted into the hot spa pool by Cindy the owner, and Scott the physical therapist and gently moved and floated over the water. When Scott, was finished, he turned to me and said, “I can see he’s in there, and I’m going to do everything I can to help you and your son.”
THAT WAS A TURNING POINT IN ERIC'S LIFE and the beginning of a wonderful 10 year relationship with Cindy, the owner and founder of the pool rehab.
For 2 years Eric was placed in the hot spa once weekly for Watsu, a kind of water Shiatsu. While on his back in the arms of the practitioner, he was gently floated over the water. Eventually, he was allowed in the main pool which, at 87 degrees, was 15 degrees cooler than the Spa, and he tolerated it. Over the next year Eric continued with Watsu and Cindy and I began standing him upright in the pool. During this time he was beginning to take a few steps on land with the maximum help of myself and our friend John.
I forgot to mention that all this time Eric had a feeding tube.(Gastrotomy tube that protruded from his abdomen). The morning of the Tuesday before Thanksgiving 2002, pool day, his feeding tube was laying right next to him, it had fallen out!. He was 100% tube fed. Not having any real interest in eating during the times I had tired to work with him, I made him a deal. “If you eat this baby jar of applesauce without any problem, we'll still go to the pool”. Our pick up was 9 a.m..and he had a feeding at midnight, so I wasn't too worried.. He ate fine, and we went to the pool! (Transitioning from 100% tube fed to 100% oral feeding was not without problems, and that's another story.)
Some days there was a physical therapist available, and that day we had Mike. Eric had not been allowed to try to take steps in the pool up to this time because it was felt he needed a little more head control and better movement of his legs. I asked Mike if we could just give Eric the freedom to do it any way he could. Although his right foot never fully touched the floor of the pool, Eric walked 75ft that day!! It was almost like he was running in air. (Realize that we were seriously supporting his torso by holding his arms at the hand and elbow.)
Over the next several years Eric continued to progress, though inconsistent and sporadic in and out of the pool, the distance walked was greatest in the pool. The third year after the accident Eric began to have occasional seizures. They knocked out his stamina and it would take weeks to get it back. Sometimes he went 2 or three years seizure free. Despite setbacks , he managed to build up to walking as far as 800 ft during his 45 minute sessions! In December 0f 2008, he walked 1,225 during his session. (Eric's walking is always with maximum assistance of 2 person, one on each side).He was so happy. When I looked at the number I saw 12-25 and said he gave mm the best Christmas present!
Cindy sold the business in 2009 but stayed on working part time to help the new owner. From then on Eric could have only one session a week. That was the only time Cindy was available and no one else wanted to help me get Eric out of the pool. It was difficult and precarious. Through all the years, Cindy loved us both, and that's why she continued to help.
I got Eric into the pool by a kind of reverse piggy back. He leaned on my chest with his arms around my neck as I lifted him from the wheel chair. Then he put his legs around my hips as we gradually went down the steps backwards into the pool. Once I was lower than the second step I was in enough water that we kind of floated down into the pool.
The problem was, Eric did not feel safe in the metal pool lift. First, at only 16” deep, the seat was too short. Eric's knee to hip measurement is 22 inches. His wheel chair cushion was 20” deep. If he felt insecure he could arch his back and stiffen his body and slide right off. At 6'2”, 180lbs, a seat belt would not hold him if he was thrashing around.
There was a metal foot rest that was also too short. With his feet on it, his knees were higher than his thighs. We removed the footrest once, but while Eric was in the pool someone else needed the footrest back on to get in the pool. Details, details! I decided it was easier and safer to do the reverse piggy back. For a few years I also used reverse piggy back to get Eric out of the pool. The last 2 steps were rough! Cindy pushed on my butt to help me get up the steps and the Life guard helped me lift him up into his chair!
As Eric got stronger, Cindy and I eventually walked him up the steps and out of the pool. With Eric's feet placed at the second step from the bottom, Cindy pushes Eric's butt and I pull Eric’s arms to get him to standing on the second step. I guides his left hand to the railing. I then take the same position of supporting his right side; Eric pulls his left side up via the railing and leg up to the next step while Cindy guides the R leg to the right. The stairs and handrail are at an angle so he cannot walk straight up, the right leg must move to the right which each step. Cindy puts the right foot on the proper place on the step and then Eric pulls his left side up as I pull his r side along. There are five steps to go up. Then Cindy gets out from behind Eric, takes his left hand and we walk him two more steps on the flat surface and a 3rd person puts the w/c behind him to sit down. You had to see it to believe it.
I eventually found a wonderful man willing to tackle building us a pool, and do it with Eric's specific needs, for our particular budget, Kevin Mitchell of Mitchell Pools. He had worked with me for three years, designing different plans to present to zoning. The first was to be and indoor pool, built very close to the house so that the house exterior wall would be one of the 4 walls. That was turned down. Next was a pool in our large basement, Cindy advised me against it, because of humidity, Her pool rehab was huge, and even with their enormous HVAC system they were experiencing rot issues.
Mr Mitchell was so patient. He always said, “Diane, I'm going to get Eric a pool.”
Eric did get his pool! During construction of Eric's pool, the new owner of Cindy's business unexpectedly closed the doors. There had been two locations; in the newest one, the pool was filled in, and it became a dollar store. What a horribly sad waste! The borough of Birdsboro purchased and refurbished the original building and is working on a reopening. Details are pending. I still would not be able to take Eric there when our pool is closed because, even if I took him in reverse piggy back, I wouldn't be able to get him back out. Eric needs a hydraulic lift that utilizes an over the wheelchair style sling.
Cindy left a legacy....hundreds of people whose lives were changed at Aquabilities. Cindy is one of our heroes. Over those 10 years, she changed both our lives and we will be forever grateful! Her vision created a safe place where people like my son could go and receive the magnificent healing benefits of pool therapy.)
Construction of Eric's pool was completely finished December, 2010. The day after that it snowed. Eric got into his pool the Summer of 2011. .
Mr. Michell builds Eric the perfect pool
Oprah says “Love is in the details!”
True to his word, Kevin Mitchell, owner of Mitchell Pools in Oley, PA built Eric his pool in 2011 with every detail just for Eric.
First he had to move our hill, 14 ft high. 60 ft long and 30 ft deep. Major backhoe excavations and 37 truck loads of dirt later, the ground was finally flat enough to start to dig the pool!
The water depth that Cindy and I walked Eric in at Aquabilities was 4ft. I'm 5 ft and Eric is 6ft 2”. We couldn't make Eric's pool any deeper. If there was a problem and one of us fell it could be disastrous.
Mr. Mitchell focused on making the pool as long as possible within our yard to maximize the length that Eric could be walked without interrupting his pace..41ft! Because we have an enclosed porch, the width had to be 15 ft for a length of 22 ft and the remainder 12 ft. A modified L-shape.
He put 2 ft long coping pieces with a smooth rounded edge safety grip so Eric could hold on and yet glide his left hand when he became able to pull himself along the wall. He designed the 6 ft wide steps slightly deeper so if we tried to walk Eric out he would have more room for his large feet if he didn't fully get his foot all the way to the back of the step, it would still be OK. He made the steps slightly less, high, so Eric wouldn't have to lift his feet as high.
Kevin Mitchell seemed to always be thinking about what would make Eric's pool even better. One day during excavation, he said, “Diane do want a bench in the corner?” Best idea ever!! When we started to actually walk Eric in his pool, the bench was the idea height for Eric's butt to make a landing. The absolute perfect rest stop. After every 50 ft of walking Eric could rest on his bench!! Plus right next to Eric's bench is a foot higher one, almost like a step, where we put my grandson Gage, when he was a toddler, and lots of other kids since.
I was so impressed with all the safety details from Mr. Mitchell and the codes departments of our City, Reading. There was some kind of metal connections everywhere..before the cement sidewalks could be laid, completely over the floor and walls of the pool...EVERYWHERE! The electrician from the City came to check that every single one of those connections was continuously connected...to avoid being struck by lightening or electrocuted. Who knew?
Also, I had to be taught how to use and care for the pool. I was so scared I would do something to stupid to ruin the pool or break the pump or heater! Derick, the head of Mitchell pool's service crew was very patient.. Anyone who really knows me gasp here. He drew me pictures, I wrote everything down, and practiced. I'm talking about operating the pool pump, being alert for when to call for service, I.e .too high pump pressure, or low flow, etc. It didn't hurt that Derick reminded me of Brad Pitt, and even sounded like him
The new pool had to have the walls brushed every day for two weeks before the pool could be closed for winter. You have to do that with new pools. Mr Mitchell showed me how to do it and I video taped him.
I took pictures of almost every stage of pool construction. All the different crews: plumbers, people who built the retaining walls, concrete pavement crew, the people who blew on the special pool walls, the electrician Don...EVERYBODY was so nice and explained what they were doing.
When everything that needed to be done for the pool was done, the pool was closed for winter. Like I mentioned, it snowed the day after the pool was closed.
The next summer, 2011, before Eric could go in the pool there were a few more things to be done. Everything I needed to do was reviewed. We got a solar cover and when they brought in the roller to put the cover on and it was all set up, I could not budge it, Not one inch! I fell apart and really cried. In my dreamy state of love, gratitude and excitement of finally getting Eric a pool I thought I could do everything. Because the cover was so long, a lot of pools are 32 feet long, it was extra heavy. It would take two strong people to turn the roller. One of the people who help me, and I together could not turn the cover roller to get it over the pool.
So, they showed us another way of fan folding it at one end of the pool. That would also take 2 persons, but it wasn't heavy. A little cumbersome, but not heavy. One time that first summer a storm came up quickly, and Gage's mom and I tried to unfold the cover in a hurry. The wind blew the cover up and literally pushed me into the pool horizontally! We got the cover on the pool and all was OK. It was actually kinda fun, the water was warm!
I spent a lot of time researching pool lifts. I went with the Triton pool lift. When Mr Mitchell's crew came to install the anchor for the lift they saw that it was not grounded and took it back to the shop to install grounding wires etc. Always safety first with Mitchell pools! What if I would have had just anybody put that anchor in the hole? The hole was already in the cement, because it was done when the pavement was installed.
Ihe Triton was hydraulic and used a sling that goes on Eric's wheel chair seat. It looked easy to get Eric in and out. It was very easy getting Eric in his chair over the sling. It was easy connecting the sling to the lift hooks. It was easy cranking the lift up to get Eric out of his chair and into the air.
Now both the literature and the customer rep told me that the teflon mesh at the base of the pole would make it easy to the push Eric out over the water. Of course I had help with us, especially for this first adventure. I expected to be able to do it myself. I used all my might and with extreme total body effort I got Eric over the water. I thought I felt my sternum creak. This glitch meant I would need help every time I wanted to get Eric in the pool. Just another detail.
We lowered Eric into the water, lifted him out of the sling and started walking!!
Eric’s First summer in his Pool—2011
A dream come true!
ERIC MADE MAGNIFICENT PROGRESS THAT FIRST SUMMER! Week after week almost everything seemed to improve. By the last week of summer in the pool Eric was walking 1,800 feet.(Reminder, always with max assist of 2 persons) and his body was changing.
1.Eric's head and trunk control improved moderately. 2.His right eye chronic swelling diminished greatly. (see in pic he is able to open his r eye with minimal swelling) 3.Reduced drooling, frequency and amount. 4.He talked a little bit more, and a little more clearly. 5.R ankle with extremely poor range of motion (ROM) foot drop and internal rotation: ankle loosens up and range of motion (ROM) improves slightly. Stiff toes get softer. 6.Normalcy of bowel habits improve. 7.Restless sleep improves: Sleeps all night after pool session. 8.8.Increased stamina; increased walking distance in pool, improved steps. 9.Moderate improvement in gross motor movements. (Not fine motor) 10.Improved sense of independence through freedom of movement in water 11.Improved self esteem 12.Increased size of buttock muscles.
NOTE:.That Summer (2011) Eric walked 40 feet holding on to the side of the pool with his L hand, and only his mother holding him, not 2 people!
When Eric was going to Aquabilites he had improvement in these areas that lasted a few hours after a session.
That summer in the pool the benefits seemed to last almost till the next session. THEN WE HAD TO CLOSE THE POOL IN EARLY SEPTEMBER.. There was of course, no other pool for him to go to.
GRADUALLY, Eric's body regressed: By November he had stretch marks on his buttocks where larger muscles once were. Every physical improvement disappeared but...
ERIC'S SELF ESTEEM WAS UNCHANGED!!!
Summer of 2012 We started at square one. Eric is a very happy person and is soo happy in the pool. So he didn't mind at all that we were starting over again in terms of his progress. (FYI: Eric does have stress reactions that are unpleasant but he has no recollection of them afterwards.)
Eric had a long seizure in march 2012 after going almost 2 years seizure free. He wasn't fully back to his previous stamina when we opened the pool. That summer the weather was strange, and we were not able to get him in the pool as often.
There were different weather anomalies in 2013, 14, and 2015, that we were not able to maximize use of the pool for Eric. Although he NEVER FULLY RETURNED TO THE PHYSICAL STATE HE REACHED IN 2011, he did make good progress each summer, getting up to walking occasionally 1200 and 1500 ft in the pool, but not 1800. Of course it all recedes shortly after we close the pool.
Use of the pool is not Eric's only rehab activity. We do other things, but none are as easy or as directly beneficial as walking in the pool. Myself and another strong person, walk him on land just as we do in the water, except it is MUCH harder on all 3 of us. In 2011 he was averaging 300 ft on land. He got up to 200ish this year and recently, serendipitously after we heard from Jade, he got up to 320ft on land. That was the first time since 2011.
Not everything improves when Eric is in the pool. Obviously, His left hemianiopsia is unchanged. (Blindness in L half of both of his eyes) His generalized R sided weakness, which is why I help him hold that side up wherever we walk, does not improve. His dysphagia and need for thickened liquids and homogenous consistency food also did not change. BUT WOW, SOO MUCH DID IMPROVE!
I am more than fond of Mr. Kevin Mitchell. I LOVE him, and his entire crew and office staff! My nephew Jeremy put together a thank you video for me which we gave to him before Christmas 2011. I chose the Whitney Houston song , “One Moment in Time” to play as the background, because that Summer, that one moment in time, when he finished walking 1800 ft in his pool, my son Eric was “all that he could be”.
Benefits of Aquatic Therapy
Excerpts from C. Henley, PT Miami, Florida
The buoyancy of water decreases the weight and stress on joints, encouraging freedom of movement. Movement and functional activity are more comfortable in water because the pull of gravity on the body is not as strong as on land. Water supports the body, reduces joint stress, and provides resistance and assistance to movement, allowing improved mobility, strength, and function.
Water provides unique properties making it an excellent environment for rehabilitation”
Increased cardiovascular function-resistance of the water aids in controlled conditioning.
Reduced stress on joints-buoyancy reduces the stressful effects of gravity on the body.
Improved muscle strength and tone-resistance of the water aids in gentle muscle strengthening.
Increased balance and coordination-balance can be challenged in a safe environment.
Pain modulation-turbulence and the support of the water decrease pain.
Decreased edema-the hydrostatic pressure of water decreases swelling.
Improved posture and trunk stability.
Improved metabolism and calorie burn for weight control.
Increased circulation-hydrostatic pressure increases venous blood return to the heart.
Respiratory benefit-hydrostatic pressure offers resistance around ribcage during respiration.
Improved kidney function-increases blood flow to kidneys, renal clearance, and diuretic effect.
How the “A Mother’s Love/Jade Shutes Fundraiser” Began.
In 1996 I was reading about an Aromatherapy Conference in Boston entitled SYNERGIA and I felt intensely compelled to attend. I loved the idea of Synergy. I was beginning to notice, a kind of divisive, almost snobbery, developing in Aromatherapy circles, especially “My oils are better then your oils!”. The conference description seemed to hint an attempt to build bridges and close gaps. It was organized by Aromatherapist Jade Shutes. Synergia was the first Aromatherapy conference that I ever flew to attend by myself.
As I watched Jade speaking with panelists debating different views of aromatherapy, she seemed to ooze with sweetness and good. She was so mannerly and dignified in her method of defending her position. The debate that day seemed like a combination of “my oils are better than your oils” and intuition verses chemistry. I loved what she had to say and I loved her!
I remember thinking at the time. “Not that we don’t need science, but that a rose will smell as sweet whether or not we know why. Knowing why it is not a prerequisite for the enjoyment of the aroma. If science is your king, then I hope that intuition is as least your queen.”
Eventually I introduced myself and told her how I wonderful I thought she was.
When Jade became the President of NAHA I was so excited and supported her. A very small faction within the NAHA organization seemed to have a problem with her. There had been some unpleasant, vaguely accusatory emails that never made sense to me. I would email her occasionally with supportive inspirational words.
Jade met Eric in 2004 when I took him to the NAHA Conference in Norfolk. (See “Eric and Mom's Serendipitous Trip “above). There was an evening dinner meeting and I had Eric a few feet away from me, lying on a roll-a-away bed near the wall.
Jade came to the table and asked to meet Eric. Eric and Jade had an instant connection. The way they looked at each other really moved me. Eric’s right eye doesn’t always fully open, and he opened it wide as he looked at her. She asked me what happened. I briefly said, “He was a passenger in a car accident, was in a coma, …..but we have a lot to be grateful about.
Jade said, “In one second his whole life was changed,” and started crying, almost uncontrollably. She said “I can sense him,” “He is such a sweet soul.” She continued to cry. I hugged her and tried to console her. Once composed, she sat with Eric on the side of his bed, holding his hand and stroking his arm as she spoke to him. I went back to the dinner table. I was so happy that someone as pretty and sweet as Jade, had such a special connection with my Eric. I heard Eric’s voice and looked over to see him looking into Jade’s face and saying, “I love youooo.” That was big!
At that time Eric rarely uttered a word. On Mothers’ day 2001 we were watching the movie, Stepmom with Susan Serrandin and Julia Roberts. The part where they both are worried about how her daughter will feel after Susan dies; Susan about whether her daughter will miss her and Julia about whether she’ll be good enough as her stepmom. It’s a very emotional scene, if you haven’t seen the movie, it’s hard to fully describe the emotionality. Eric turns to me, and speaks his first sentence, very clearly but slowly,” Mom I love Youooo.” I cried with ecstatic joy from the precious mother’s day gift he gave me. It was a few years till he said it again.” So his saying “I love you” to Jade was actually huge!
Jade stayed with him for about 20 minutes, and said she would mix a special aromatherapy formula for him. The next day she came to help me with Eric and massaged his feet during my “Serendipitous Aromatherapy” Presentation.
When the conference was over I thanked Cheryl , the NAHA president and her husband Jeff for making this all possible:. They actually thanked us for coming, saying we were an inspiration to the conference members. Just then the director of volunteers came up to us and said,” Everyone loved your talk”. In fact, you and Eric inspired a healing. Saturday night was the NAHA official meeting. Jade and the people who thought they were having problems with her, made up. They said that Eric’s presence at the convention helped them put into perspective what was really important. They even took a group photo. To hear this was very emotional for me. While being grateful for all that had happened for Eric and I, it never occurred to me that his presence had an even greater purpose for others. Who knew that as much as Eric loved Jade, that his very presence would actually help her. Also, the director had been taking photos during my presentation. One showed me talking, with Eric and Jade in the background. Another photo was of Jade massaging Eric’s feet. You could feel the love. It seemed to embody the classic healing relationship. It was enough to bring me to tears.
I had gone to Norfolk to give a talk on Serendipitous Aromatherapy, and as it turned out, the entire trip was serendipitous! When the next NAHA Journal was published, there on the inside cover was the beautiful photo of Jade massaging Eric’s feet, the caption underneath read, “Serendipitous Aromatherapy”.
Over the next several years Jade and I had a few emails, and then kept in touch on FB with some chats. She would often say “Give a hug to Eric for me”.
September 26, 2015 was the 16th “anniversary” of Eric's accident. I found myself filled with waves of sadness. I really had believed he would have been further along by now. When I posted on face book that it had been a long journey, many, many friends wrote lovely statements of encouragement, everything from how strong and amazing I've been, wonderful mother, and more. They sent blessings and prayers. It was enough to ease me out of my sad place....for a while.
By November 2, I became overwhelmed. Basically, I Iooked at Eric and thought how he should and could be much further along. I had I failed him. I did my best but not only wasn't it enough, it wasn't good enough, and not the best he deserved.
Finally I gave into throw myself on the bed full blown sobs, for a long time...till I got down to just whimpering. I managed to take care of Eric and do what needed to be done, while throughout the day, holding back occasional sobs that still gurgled up in my throat like lava after the main eruption.
When CD came to help me walk Eric outside that day I was still very emotional, and breathy from sobs still sneaking up. I told him how I felt I failed Eric, and Eric shouted “Noooo Mom”. Meaning of course, that Eric didn't think I failed him. I had to pull myself together for Eric and my grandson Gage who lives with us and had just came home from Kindergarten.
That night after they both were asleep I looked at face book, which is mostly a calming distraction, and there was a post from Jade.
This week a friend of mine has been on my mind a lot. His name is Eric and I thought, for those of you who are interested....you might like to hear his story as well as how aromatherapy, faith, and the love and commitment of his mother is nothing short of inspiring. Diane Majka Grandstrom I love and respect you. I am ever so grateful that my path crossed with yours and Eric. You are a true inspiration! Much Love to you, Diane. I thanked Jade , but I was too emotionally raw to say anything else.
Several hours later came this private message from Jade.
Have been thinking about you and Eric this week and wanted to check in and see how he is doing. I also just read your entire story. I have cried tonight for Eric, for you, for us as mothers and all we go through with our children. I respect you and all you have done over these years for Eric. From one mom to another, you are amazing. Please send Eric my love.
I still couldn't message her back.
The next morning came this message.
Hi Diane, Is Eric okay? I ask because he has really been present in my mind this week and I always think it is so interesting when suddenly someone seems present like that. So thought I would check to make sure all is well with you and him. I received a beautiful letter from another mom who read your story and felt truly inspired. Her son was one of the Ebola patients and has had a series of health issues arise from that. Very interesting how things work. Serendipity indeed.
Her timing was incredible! She sensed us in such detail, not having physically seen us since 2004! I wrote back.
I have to tell you I was completely shocked with your message and its timing! I have been very sad off and on since sept 26 which was the 16 "anniversary" of Eric's accident., but at the very time you were crying for us I was overcome with sadness to the point of holding back sobs almost the entire day. I cried a lot yesterday, too. However, your words were almost magical, because one of the many things I was feeling, was that I was completely alone.
Not long after I took Eric to NAHA in Norfolk, he started having occasional siezures. Almost every 3 months , mostly sunday nights and around the 20-23 of rthe month. Then they stopped for 3 yrs. came back again, stopped for 2 years, Which is why I stopped taking him anywhere far.
A lot of good things happened, of course. But I found myself evaluating the past 16 years, and how I thought he would be further along, and slipped into this sorrow. I know I'm strong, and I did my best, but it wasn't good enough or enough. I failed in mobilizing others to help him or finding enough financial resources for him. We've had a lot of great things happen, but I had to be the one to act on all opportunities, there is no sleeping on this job, and I have been very tired. There are other things happening in other areas. Anyway, enough self pity here! Your messages yesterday and today are helping to ease my sense of loss. Just 2 things yet, 3 years ago Eric had a 19 minute seizure that was not relieved with his medication (rectal valium) He never got his stamina fully back. The picture of him is the best one ever of him and was taken before that time. He could walk with the assistance of 2 persons, 300 feet at a clip with one break. After that seizure it was only 30 ft. He eventually worked up to 120 ft. on a few rare occasions he made it to 200.
YESTERDAY he made it to 360ft, the most he has walked in over 3 years!! He took 8 breaks but I was in happy shock. I 've heard this is a big time of releasing...
I wondered if it was Jade's loving energy that somehow propelled him along.
In 2006 I was diagnosed by EKG, as having had a previous heart attack. I decided to downsize, sold my house in 55 days. We moved into in a very nice downtown historical hotel....the Abraham Lincoln. It was December 22. We got a 650 square foot suite, they let me bring my own furniture; there was only one other person in the hotel.. Five months later we got a beautiful house, and the next year I found out I did not have a heart attack! 2 of the leads were too close which reversed the polarity and mimicked one. Five years ago, I managed to get an in ground pool built for Eric. We can only use it 3 1/2 months a year and I need help to get him in and out, and walk him in it. I was fantasizing about getting a retractable dome for the pool so we could use it 9 or 10 months...or even longer with a special heater. I was thinking of doing an indiegogo crowd funding...but I lost my confidence and didn't do it.
So I serendipitously got us a great house and a pool. I did have to really pay attenton, and persevere and be tenacious etc. I am grateful for that opportunity and that Eric and I are still alive, and that despite everything, he is happy. I AM SO GRATEFUL WE HAVE YOU IN OUR CORNER. I'll never forget the first time I saw you at Synergia, and felt goodness and sweetness simply ooze from you. THANK YOU dear Sweet Jade!! Love to you!
The very next evening when I checked face book, I saw the “A MOTHERS LOVE/JADE SHUTES FUNDRAISER!!! I couldn't believe it. It's very interesting to me when I think back how I felt so intensely compelled to attend the Synergia conference in Boston where I first met Jade.
Eleven percent of the goal has been raised in less than 2 months!! If you would like to go to A Mothers Love fundraiser page please CLICK HERE