Walk With Me-Five
There is no way to adequately describe the stress I was under during Josh’s early years. Life wasn’t just about him. My older son, Richard, began to show signs of illness, and I was too absorbed and tired to notice those early symptoms.
My husband worked shift and his bouncing schedule added stress. We experienced financial difficulties when his daughter from a previous marriage had surgery and her mother decided to drop her from insurance to force us to pay for all the medical treatment.
But I don’t want to talk about those pressures. I want to keep the focus on Josh and how he experienced life. Just know that in my mind I felt layer upon layer of pressure.
The top layer, the one that affected me the most, was sleep deprivation. It’s such a subtle progression starting with simple tiredness. The advice given to me was to sleep when Josh slept and he was still only sleeping two hours at a time. That works if the other children don’t need you, but Richard was just barely five years old. No way was I going to sleep when he was awake.
Months became years and I was heading toward year two of no full night of sleep and the symptoms started getting more severe. I remember one night I leaped out of bed when Josh started crying and my neck kinked to the right. And it stayed that way for two days. Excruciating pain and I felt so silly because I couldn’t straighten my head.
I found out how important the dream state is. When you get wakened every two hours you don’t dream and I began to feel shell shocked. Any loud noise would make me jump. I felt like my insides were quivering like soft set jelly.
Grocery shopping was a nightmare. Josh was almost two years old and unable to sit up. If I laid him in the cart there wasn’t room for groceries. So I most often held him over my shoulder and pushed the cart with one hand.
Josh didn’t look disabled and he would be screaming all the way. I remember one day, Josh crying, me with quivering insides, a lady came up and scolded me, telling me to sit that child in the cart. I looked at her and my brain simply couldn’t think of anything to say. I blurted out, “he can’t sit,” then went on with my shopping.
She approached me a few weeks later and apologized. Someone told her about Josh’s condition. I never gave much thought to what people thought of us. I had been reduced to living life minute by minute. I couldn’t deal with anything except what was in front of me.
Even now, thinking back my mind goes to holding Josh, walking with him because he couldn’t tolerate the back and forth motion of the rocking chair. I would have to stand and sway with him side to side. I walked until I was exhausted, sang until I was hoarse. Slept as often as I could but it was never enough.
I knew I was in trouble the morning I woke up with him in bed beside me and I couldn’t remember going upstairs to his crib and carrying him down that narrow, dark stairway. I’d done it all in my sleep. I started to experience black outs. Moments when my brain was so tired it would go to sleep on me even when I was awake. I was afraid to drive the car.
My mother-in-law took charge. She asked me to take Josh through Mayo Clinic. I knew his diagnosis wouldn’t change but I agreed. I was desperate so we made the trip.
The doctor in charge was Dr. Groover. He had a thick, deep Southern drawl. I can still hear it in my head. He changed my life forever.
He told me that Josh might or might not have a mental disability. He said there might be areas where Josh was brilliant and might be areas that were harder for him but what I needed to keep uppermost was that Josh himself would let me know what his strengths and weaknesses were.
He reminded me that cerebral palsy is a static state. What we had, we would keep. What we gained, we would keep. Cerebral Palsy isn’t a disease, it isn’t progressive, and it’s not contagious. It’s simply a catch all name for certain types of brain damage. It most often happens at birth but it can happen at any stage of life.
I can’t tell you how relieved hearing that was. I can work with what I know. He went on to give me the best piece of advice I’ve ever received. He told me to forget normal. Josh was disabled. He wouldn’t be able to do things in a normal manner. That didn’t mean Josh shouldn’t do things. It meant that whatever Josh wanted to do he should be allowed to do even if that meant using unusual methods.
I asked Dr. Groover if Josh needed a brain scan. The developmental specialist had been pushing me to get one. I told the doctor I didn’t want it done. If he recommended it I would agree but I really didn’t want Josh put through it.
Dr. Groover told me that the brain scan wasn’t necessary and for the developmental specialist it was academic curiosity. I can’t tell you how outraged I was, and still am, that doctors would recommend tests simply because they are curious. The specialist that I’d been taking Josh to every three months wanted to know what part of Josh’s brain was damaged and how severely.
I didn’t want a record of the damage to be in existence. I didn’t want a school system to refuse Josh opportunities based on a brain scan. I wanted Josh to do whatever he chose, without limitation.
So, I left Mayo clinic, went home and started making changes. As Josh came off the phenobarbitol, a drug he had been put on when born and kept on for no good reason that I can see, he calmed down. He slept better, he became less fretful. I found out from the neurologist, a specialist recommended by Dr. Groover that in most cases phenobarbitol calms people. In Josh, it did the opposite. Something the developmental doctor should have thought of and didn’t bother to check for.
When I found this out, I wanted to tear somebody’s hair out. All the lost sleep, all the crying and screaming, at times mine, happened because of medication. If I’d known more, been better educated about medicine, if, if, if
There is no way to change the past but, for anybody reading this and going through similar circumstances, you have a right to ask questions. You have a right to make your own decisions; you can refuse testing recommended simply because a doctor is curious. If behavior is difficult, ask if it’s possible that medication is at fault.
On the home front, Josh had developed a habit of crying. Of wanting me every time he woke up. I had to change that. I couldn’t do it when my husband was home but on the nights he worked I implemented tough love.
Josh understood everything I said to him. I wouldn’t tolerate his older brother behaving badly, I wouldn’t tolerate it with Josh either. I sat down with him, explained that I needed to sleep. I told him what I needed him to do, and then I put him to bed, and I let him cry.
I’d time him, and after fifteen minutes, I’d go up, pick him up, calm him down and explain to him that I wasn’t going to feed him, or sing to him, or play with him. Night time was for sleeping. Then I’d put him back to bed and let him cry.
It took weeks before we worked it out. He finally figured out I meant what I said and nighttime became much better. I still didn’t get eight hours but I regained my sanity.