- Posted July 5, 2014 by
Kansas City, Missouri
This iReport is part of an assignment:
Raising a special needs child
An amazing journey
I distinctly remember poring over the adoption application and coming to the question, “Would you be willing to adopt a child with medical issues?” I hesitated. Would I? In all honesty, I wanted a healthy baby. Could I really handle a child with medical problems? I checked the “open to discussion” box.
Just a few months later, we were matched with a birthmom and our seemingly healthy baby boy arrived. The adoption was finalized six weeks later, and two weeks after that we learned for the first time that our beautiful son Raef would be facing some serious medical challenges.
Talk about a kick in the gut. But we girded ourselves for the challenge and the journey has been amazing!
Life-threatening health concerns
First we learned Raef likely had Neurofibromatosis Type I (NF1), an unpredictable genetic condition that causes tumors to grow on the nerves. Then when he was 3 months old, he began having seizures (infantile spasms). We watched helplessly as he would have up to 200-300 seizures each day by the time he was 6 months old.
We made the rounds of specialists, learned new words like “intractable” and “idiopathic,” tried all kinds of meds, even gave our baby injections. Nothing helped. We were told he wasn’t a candidate for surgery and likely wouldn’t survive. We didn’t listen.
We loaded him up in an airplane and traveled halfway across the country to Miami Children’s Hospital, where they specialized in surgical treatment of epilepsy. After a round of tests, we were faced with a good news / bad news scenario. The good news, Raef was a candidate for surgery. The bad news, he needed a hemispherectomy (basically, removal of half of his brain).
Another kick in the gut, but it didn’t take long to make our decision. This was Raef’s only chance for survival, let alone a “normal” life, so at 8 months old Raef went in for radical brain surgery. Miraculously, he has been seizure-free since that surgery nearly 13 years ago.
But that was just the beginning. We knew Raef would have complications from the surgery (cerebral palsy on his left side, left peripheral blindness in both eyes), but we couldn’t anticipate how the NF1 would soon rear its ugly head.
Just before Raef’s 2nd birthday, we learned he had a tumor wrapped around his optic nerve. Another round of specialists. More heart-wrenching decisions. And before we knew it, Raef was toddling around the hospital in his walker, while we walked alongside pushing a pole with his chemotherapy drugs. Chemo took a good 12 hours every Friday for 14 months, along with countless 6-hour round-trip drives to see his pediatric oncologists. It was exhausting, but worth it. In the end the tumor was stabilized and, though Raef’s vision was further reduced, he could still see.
Beyond the health crises
Fighting life-altering health crises is one thing, but it’s even more difficult to anticipate and prepare for life after the initial fight.
No one tells you that you will spend years taking your child to physical therapy, occupational therapy, speech therapy, and vision therapy. You don’t anticipate the countless rounds of follow-up visits to a dozen or more specialists, along with the ongoing MRIs, lab draws, and other tests. Not to mention all the meetings – IEP meetings with the school, service coordination meetings, and more.
Not only do you worry about your child’s health, you lose sleep thinking about whether your child will be able to access -- or even afford -- the health care he needs. You try to keep yourself healthy, because you know your child is going to need you for much longer than the traditional 18 or 21 years.
But as low as the emotional lows can be, the highs are equally amazing.
Raef didn’t walk independently until he was 3 and didn’t talk until he was 4, so when he reached those milestones, the joy was even sweeter. And when his baby sister Gwyn walked and talked at age 1, we appreciated her achievements even more because we knew they were not nearly as easy as they appeared.
A few years later, when his teacher told us that Raef was reading at the very low end of the scale for kids in his grade, my response was, “You mean he’s on the chart for his grade level? That’s great!” After all he’s been through, including the fact that he’s legally blind, I’m thrilled that he can now read at a 4th-5th grade level.
I threw out my expectations early on, and simply enjoy Raef’s accomplishments as they come, instead of worrying about whether he’s keeping up with anyone’s prescribed timeline. But I never listen when people tell me Raef can’t do something. After all, he’s proved the “experts” wrong time and time again. And I try never to limit his dreams. As I’ve told many teachers and other professionals who want us to be realistic, “If your mom doesn’t believe in you, then who will?”
Raef is truly amazing, and he brings joy to all who know him. He plays sports, fights with his sister and then hugs her minutes later, loves to tell jokes, makes friends wherever he goes, plays on his iPad – typical teenage boy stuff. But he is no ordinary young man!
Raising a child with special needs
So what is it like to raise a child with special needs? It’s exhausting, amazing,
overwhelming, and filled with joy, love, and laughter.
Raising a child with special needs requires immense patience. It means answering the same question over and over again. It means potty-training goes on for 10-plus years, instead of the typical 2 or 3 years. It means letting go and pushing your child, when all you want to do is keep him safe and happy. It means never giving up.
Raising a child with special needs means gaining a better perspective on the world. You don’t sweat the small stuff as much. You overlook it when people stare or make rude comments, because more often than not people are kind. You are more empathetic because you realize that everyone is different, it’s just more obvious in your family.
So looking back to that day when I was filling out that adoption application and had to consider whether I would consider a child with medical issues …
Do I wish my son didn’t have to deal with all of his health issues? Absolutely.
But would I trade Raef or the joy of being his parent? Never!