Today on the way to drop off my daughter, my little man ate his breakfast for the first time by himself! As you know, we’ve been working on his tactile aversion with food for months with his Occupational Therapist, so this was a huge victory!
I just read about yet another baby who lost her battle with Infantile Spasms. Then another mom wrote about losing her daughter to I.S. last year at the age of 6. There was a little boy who lost his battle a few months ago. I can’t help but feel immense pain for these parents and the tears just won’t stop flowing. I think so many people just don’t understand what a terrible diagnosis this is. I suppose we were the same. You see, initially, we got the diagnosis of “epilepsy”, and I remember feeling a sort of relief. We had a diagnosis, and we knew people all over the world lived with epilepsy. We thought it was easily controlled with medicine. Boy were we in for a shock. Epilepsy is such a broad diagnosis, and for so many people, it is NOT easily controlled by medicine. Then, when we got the more refined diagnosis of I.S., our relief ended. I.S. is an extremely rare condition with terrible consequences. It has two approved treatments. Two. Sometimes a treatment might appear to help, but if it doesn’t stop all of the seizure activity, it fails. It’s so complex, and much more than I can get into in this post. Suffice it to say, my sweet baby turned out to be one of the lucky ones.
I wish I could say it was because of something we did, something our doctor did, or something our friends and family did. As if the love, medicine and prayers were the answer. But saying that would be saying that other parents didn’t love enough, other doctors didn’t treat enough, or other friends and family did not pray enough for their babies. But that can’t be true. So, I guess we were just lucky.
So many I.S. babies will never crawl, never walk, never talk, yet here we are with an amazing baby, who seems to have every opportunity to do anything he sets his mind to. No, he’s not completely age appropriate. Not yet. He just had his evaluation, and he’s about 8 months behind. He was 8 months old when we finally got seizure control, and at that point, he was like a newborn. So, the clock, and his body, reset. So, eight months behind is not a surprise. Nor is it forever. Eight months behind at 20 months of age is noticeable. But, he seems on target to progress just like any other little boy, and as he grows and ages, the difference between him and his future classmates will become less and less.
I guess all of this is just to say that it’s a weird feeling to be where we are today. We don’t really fit in with the I.S. community, because even though our sweet boy suffered for months from hundreds of spasms a day, he probably has one of the least severe cases out there. We don’t even really fit in with the epilepsy community, because he has seizure control. (I was talking to our OT who’s 20 year old son has seizures, and they can’t even make it a month without a seizure, so going an entire year without a seizure, like our son, is like a dream that will likely never come true for them.) I wish I could just enjoy my little guy, but I carry this extreme guilt knowing what other families are still going through. All I can relate it to is the survivor guilt you read about when someone survives a plane crash or something like that. I feel like we have this amazing little survivor and I’m so grateful for his life and everything he brings to my life. But, I feel guilty that all the I.S. babies can’t have the same results. I wish my love and prayers could make them all better. You sweet, innocent, little babies… you don’t deserve this.