My 8 yr. old son has severe cerebral palsy. He does not talk, walk or even sit up by himself. He is as dependent upon me as a newborn baby. He also suffers from a seizure disorder and has seizures every day, usually 2 or 3, that last anywhere from 1 minute (at it's mildest) to more than 10 minutes (on a bad day).
I think the hardest part about this, for me anyway, is that he hasn't always been this way. He was born totally normal, totally healthy. When he was 19 months old, he had a plentiful vocabulary and was running around playing with his siblings. He was learning to dress himself and had big blue eyes and a contageous smile that lit up the room. One day that was my reality. The next day I had to face the overwhelming possibility that my little boy was so sick that he could die -- and no one knew why.
That morning I let him sleep late, but after a while I began to get concerned that he was not calling me to get him out of his crib. When I went in to check on him, I couldn't wake him. He was limp and cold and barely breathing. The emergency room said his blood sugar level was only 12 -- and should have been around 100. They pumped glucose into him but he still didn't come to. Doctors thought he might have had a severe diabetic attack, but weren't sure. He was transferred to a larger hospital, but on the way in the ambulance he began to have seizures. He was stabilized there, but since he wasn't improving, doctors had him transferred to St. Louis Children's Hospital. He starting seizing again just before they got there. This time, the seizures would not completely stop.
That first 24 hours, there were lots of questions: could he have gotten into something poisonous? what did he do the day before this? where had we gone? what did he eat? Doctors had no idea what could have caused this healthy child to be perched on the edge of death. In the meantime, his seizures continued, despite being on lots of anti-epileptic medications and receiving state-of-the-art medical care in the pediatric intensive care unit. Doctors recommended he be placed in a drug-induced coma for a day, or so, to give his swollen brain a chance to calm down and heal. We were informed that this treatment could be fatal in itself -- yet letting him continue to seize would eventually kill him. What a choice.
When they brought him out of the first coma, he began to seize again, so they decided to put him back in a coma for several more days. The longer they kept him in a coma, the riskier it was that he would never come out of it. And like a CSI episode, yet overwhelmingly more real, doctors were still frantically trying to figure out what would cause a perfectly healthy child to become so ill. It took a week and a half, but clues led them to the conclusion that my son had a metabolic disorder called MCAD -- a deficiency of the enzyme that is needed to break down medium-chain fats.
Most kids who have MCAD have their first metabolic crisis after an illness or other period of time of fasting. When their bodies run out of glucose for energy, they are unable to break down fat stores properly to keep up with their body's energy needs. Most kids have this crisis when they are babies or by the age of 2. Many go into a coma and never wake up. Doctors said most children as sick as my son would not have lived. That gave us hope. We knew our son was a fighter.
Well, now we knew what caused this thing -- but the damage had been done and we had to figure out how to control the seizures that were caused when his brain was damaged from the severe hypoglycemia. And that has been our battle ever since.
Blake spent 3 months at Children's Hospital before he was well enough to go home. He left with a g-tube in his stomach and a pump that fed him 24-hours a day. Although he no longer has the g-tube and is able to eat pureed foods, nothing much as changed. Every year I've thought: next year he'll improve, things will be so much better. Yet each year those expectations die a little.
But I think what is hardest for me as a mother is coping with a child who did not die -- but whose identity, personality and soul are forever changed. It took me more than a year to gather up the courage to look at a video I took of him shortly before he got sick. Watching it was like a kick in the gut and inside I kept screaming: it's not fair, it's such a waste, why did this happen to this perfect, innocent little boy??? And now, more than 6 years later, sometimes I still feel the same way.
Sometimes I think it would have been easier on our family if my son had been born with the physical problems he has so we wouldn't have known him any other way. Remembering his voice, feeling his little hugs, watching him discover new things as toddlers do ... all of those memories feel like a curse to me at times.
But I am thankful on a certain level. I know my son must have survived for a reason. One reason was given to us by doctors in the hospital. (If there are other reasons, we don't know them yet.) They told us if my son had never gotten sick, and subsequently diagnosed, with MCAD, our family never would have had our other children tested. Without the genetic testing, we would not have known that my (then) husband and I were both carriers of MCAD -- and two of our older children also had MCAD (but had never, thank God, had a "crisis), and our other child was a carrier, as well.
Now those children know never to skip meals or fast, and they take Carnitor, which helps clear the toxins from the condition out of the body and maintain blood sugar levels. It's kind of like diabetes -- if you know you have it, there are ways to live a perfectly normal life and manage it. If my children who have MCAD ever get sick and are unable to eat, or have surgery, etc., they can have an IV placed to make sure they get enough glucose until they're eating again. What is mostly frustrating, though, is this is one of the metabolic disorders that every newborn SHOULD be tested for, such as the common PKU (heel prick) test. If my son would have been tested upon his birth, he would be a perfectly healthy child right now because we would have known to monitor him and his blood sugar.
As for my son's prognosis right now, the seizures are of the utmost concern. He's been on several different seizures meds (3-4 at a time), but none have ever fully controlled his seizures. He's currently on two meds and also has a VNS (kind of like a pace maker for the brain that is supposed to help minimize and/or stop seizures). But the VNS so far has not made a significant difference in the quality of his life. There have been a lot of complications because of his condition. He just had strabismus (wandering eye) surgery. He will be having hip surgery next month because his hip dislocated, basically from being in a wheelchair/not regularly bearing weight on his legs, which causes deterioration of the bones/sockets.
I really miss my son as he was and still grieve for him at times. I ache for all he's been through and all he will go through in the future. I get angry sometimes and think about how unfair it was that an innocent child was put through this. But when I see him smile at me and he has a happy smile on his face ... well, isn't that the only thing a parent really wants? Happiness for their children? It could be getting into a great college for one child, earning a promotion for another child. But for this little boy, it's just a grin, someway for him to communicate that it's okay, that he's happy, despite what has happened. I'll take what I can get.
