A message from Gabi and John:
When we decided we were ready to try to have a baby, my biggest fear was that I wouldn’t be able to get pregnant. Never did I imagine that something much scarier would come to be. In the first weeks after Elliott's birth we knew that something wasn’t right, but it was a few months before we noticed that Elliott was really falling behind other babies. Since Elliott was born, along with experiencing great joy that we have such a sweet, mild-mannered baby boy, we have mourned many losses. Each of the developmental milestones that he has not reached has been a blow. For a long time we thought that everything was just delayed, but at this point we have been cautioned against expecting Elliott ever to be very active physically or mentally. In all likelihood, he will continue not to be able to sit, hold up his head, eat consistently by mouth, see clearly, develop cognitive skills, roll, crawl, or hold things in his hands, let alone stargaze, play sports or cook with us -- all things we dreamed of sharing with him someday.
As much as we need to reach out to others now, our emotional reactions to Elliott's situation have made that difficult, even causing us to retreat from others. Early on, connecting with other new parents was a huge support. But as time passed, the gap widened between where Elliott should have been developmentally and where he was, and it became more and more painful for us to be around babies who were healthy and developing normally. As a result, we became very isolated, because babies and children are everywhere. I am ashamed to say it, but for a period, every time I saw a healthy child, or even the kids at the hospital who were in wheelchairs or suffering with cancer, I got sad and jealous. I would think to myself, “At least those kids can see or walk or talk or develop a bond with their parents.” I am trying to get better at not resenting other people's happiness, but it is hard to get past asking, “why us?”
What has been even more isolating is not having a diagnosis. Doctors -- brilliant neurologists -- are stumped by Elliott’s condition. The only details we have are that he has epilepsy (which is not a diagnosis -- only a word for the fact that he has seizures) and some other underlying, undiagnosed neurological disorder that is causing many of his problems. That doesn’t give us many communities to reach out to for support. We have been to several support groups for parents of children with disabilities, even one for parents of kids with epilepsy, but even there we felt like no one could comprehend our situation. Sure, their kids have seizures and that is truly scary, but those children can communicate with their parents to tell them something is wrong, they go to school, they run through the house and sit at the dinner table. Elliott is a 25 pound rag doll who will lie quietly on his back for hours unless we move him.
We still struggle with this reality and how it impacts both Elliott and ourselves. We had so many plans in life that are no longer a possibility, because caring for a child with such profound challenges means we have to visit the hospital several times each week, give medicines every few hours (and the regimen changes weekly!), hook Elliott up to a feeding pump for hours each day, and do endless physical, occupational and vision therapy. We love Elliott beyond words but wish there were more hope for him. We hope that by sharing our story and reaching out to others, that we can build a stronger community for parents who are going through the heart-wrenching pain of having a child so profoundly disabled by mysterious neurological disorders. Our unfulfilled hopes for Elliott are now being redirected to ensuring that research can be done to help better understand how and why this happens. Our goal is to raise both awareness and money for undiagnosed neurological disorders and, hopefully, to someday help other children with these illnesses find diagnoses and effective treatment.