My son woke me up at 1AM one morning to tell me he had to go to the bathroom. This isn’t unusual, in fact, it’s fairly normal. But that night something was different. I had a flashback to another night he had to go to the bathroom. Maybe it was because his leg was sore and he was having trouble walking.
Or maybe it was because he was half-asleep and didn’t respond when I talked to him. I don’t know what it was. But I had the flashback and had a hard time getting back to sleep once he did.
A little over six years ago, a week before Halloween, Cole got up to go to the bathroom. I heard a crash and found him on the floor. He had fallen off the toilet and knocked down the towel shelf. He was awake, but barely responsive. As we cleaned him up, he seemed to come out of it. He went back to bed and we went to sleep. The next morning, he would hardly wake up. I took him to the urgent care center which was a mile or so from the house. This was in the days of the H1N1/Swine Flu scare. The doctor there, gave him a once over, said it was the flu but he wasn’t bad. Rest and Tylenol would do the trick.
He seemed to get better over the week and even went trick or treating on Halloween night. The next day was Sunday. He woke up normally. We played a bit. We had breakfast and as he ate, he became lethargic. He and his mom sat on the couch. I was going to run to the store for a Sunday paper. I went out the door but I got to the truck and thought I needed to go back inside. I went in and he was still on the couch holding on to his mother. I got close and suddenly he screamed and reached out for me. He had me in a death grip. He was crying, shivering, and squeezing hard; time to get back to the urgent care. I tried to get him to walk. It was a bizarre type of walking with long, uncoordinated steps. Got him to urgent care and carried him in. He was transported to the local hospital with the assumption it was a seizure caused by H1N1. Later that day, he was transported to a children’s hospital 50 miles away. I was a grad student in NY at that time so we ended up in Syracuse. Little did we know that we would be there for 53 days. Cole had suffered a massive stroke at the age of 11. Both halves of the cerebellum had been destroyed and there was damage to the brain stem. He slipped into a coma and the Neurologist on duty said he might live another 48 hours.
I won’t go into details of what those 53 days were like, or the years that have followed in the recovery process. Chances are that if you are reading this, you have your own story either as a parent, sibling, or medical professional. You can relate in some way to the anxiety, the fear, the hopes, the joys, and the sorrows. To any of you who have lost a child, I can only offer my sincere condolences and wishes for your peace. A parent should never outlive their child.
We are lucky to have the Denver Children’s Hospital and the Pediatric Stroke Clinic in our lives. The Doctors, Nurses, and rest of the staff are excellent and we know that our children are getting the best care possible, and that they will continue to get that care.
The first year after his stroke was the roughest. One of the side effects has been that he has trouble swallowing. There had been so much damage to the brain that it had to rewire itself. He had to relearn a lot of the basics. Mealtime was, and still is to some degree, a challenge. But you prepare for that and are alert for problems. The common cold could be life threatening. Until he got strong enough and the brain figured out how to handle all the mucous draining into the throat, we had to be hyper-vigilant, ready with the turkey-baster to suck it all out. We had to remain calm and talk him through it. As time went on, it changed to staying calm and talking to him, reminding him what he needed to do. It gets better all the time.
Before he had the stroke, Cole was a good athlete. In spite of his Down syndrome, he played baseball on a team with typical kids and was a superb skier. The stroke cost him his favorite athletic activities, at least for the short term. He is skiing again. He isn’t as good as he once was, yet. He kayaks with me. Walking is still difficult but he keeps working on it.
As a parent, we have expectations to some degree for our children. We want to see them advance in whatever thing they pursue, be it athletics, music, art, etc. A parent feels a thrill and a joy when the child masters something. For me, the thrill and the joy come every day now. They come not when Cole makes some huge stride. They come now with everything he successfully does. They come now with everything he tries to do, fails, and tries again. They come when I see how happy he remains, in spite of everything he has been through, in spite of the things he now struggles to do.
Not all children will react the same to the fact that their lives are altered. I teach skiing to children and adults with disabilities. I see the gamut of emotions and reactions. I also see that the reaction of the parents and siblings to whatever the child is attempting is important. When the parent steps back and lets the child take the great leap into the unknown, it is important to the child. When the parent encourages the child and congratulates him/her on accomplishment, no matter how small, it matters to the child. We can do so much to help our children adapt and grow, no matter how dire the prognosis.
But what of us as parents and family members? How do we recover? How do we get over the doubts; the what ifs? In some cases, we don’t even realize how deeply we have been affected by the child’s stroke. Sometimes that all gets buried, and remains buried, as we go through the day to day routines and work needed for the child’s recovery. Sometimes we feel so stressed and helpless that we can barely function. We can feel guilt. Maybe we become over protective of our children. How we react depends on our culture, our family, the way we were raised, our own personality, or even the day or the hour.
Until that night, I thought I had gotten past the trauma of the stroke and the memories of those days. Fortunately, I also remember the good. I remember the dozens of people who donated time, food, money, or gifts. I remember the hundreds who prayed, as individuals or in their churches, for Cole. I remember my Native friends and relatives across the country that performed healing ceremonies for him. I remember the pediatricians in the pediatric ICU who gave us hope when some told us there was none. I especially remember the pediatrician who stayed with Cole and us during the critical first 24 hours. These people will always have my gratitude.
Over the last 4+ years, I have turned to my own spiritual beliefs to find a sense of peace and acceptance. I have leaned on friends during some of the rougher spots. I have engaged in the hardest physical activity I could find when it seemed things were closing in. All of these things have had a positive effect. Probably the greatest healer is watching the joy in Cole’s face for every minute he has. As I was reminded that night, healing takes time- the healing of the child and of ourselves. And so I will continue to work at it.
Grief, guilt, stress, and depression are not weaknesses. They are part of being human. It does us far more harm to just bury them, through work, drugs, or alcohol. When they are kept bottled up inside, they can cause physical illness or even death. The emotions need to be let out. They need to be recognized. Then they need to be let go. The last part is the hardest but the first step is to recognize that they exist to one degree or another in each of us. To those who have made peace with it all through whatever means, congratulations. For the rest of us, let’s keep working at it. Support groups like the one that meets regularly through the stroke clinic are a good way to go for some. Talking things through with a professional counselor or a close friend is another. Meditations, religion, spirituality, yoga, physical activity with time to clear your mind are all good options. Not everyone is the same and not everything will work for everyone. Just remember that you are not alone, nor are you Superman. Do whatever it takes. We need to take care of ourselves for the sake of us and our children.