Thursday, February 20, 2014

What it's Like to Raise a Child With Special Needs

If most parents had to take their child to a neurologist with the fear that something was wrong with their child's brain, they would freak out. For us, it's normal. Twice a year we pack up for a day trip to the hospital where we monitor my son's progress (or lack of progress), assess his cognitive abilities, physical abilities, adjust medication, and bombard the doctor with a list of questions we've been saving up for six months. Most of those questions are never answered.

"We don't know," the doctor always says. "There is so much about the brain that is still a mystery to us. Be thankful for how well he's doing. Count your blessings. Oh, and watch for seizures." That seems to be the line that ends every appointment, our cue to take our questions, concerns and frustrations home with us for another six months.

For 363 days of the year, we plod along, surviving as best we can and sometimes even thriving. For the other 2 days, I am reminded that life is not normal and I don't know if my son will get through the school year, let alone be able to live on his own one day. For those 2 days, I allow myself to feel the feelings I've suppressed the rest of the year because I'm too busy trying to survive each day. I let myself grieve. I hide under the covers. And I eat ice cream for lunch.

My husband often wonders why I'm so emotional on these days. "The appointment went well," he tells me. "Our son is doing okay."

My head knows these things, but my heart is not so rational. The fact that going to the neurologist is a familiar thing means that my son - who is "doing okay" - is not doing great. He will never be on a sports team, win an academic award, or hold a job where higher cognitive skills are required. Other moms brag about their children's achievements. I stopped doing that long ago.

I think it's okay to take off your superhero cape every once in a while (which, let's be honest: the cape is just for looks) and let yourself be human. In fact, I don't think it's just okay; I think it's great. Hide under covers. Cry. Eat ice cream.

Just don't forget to watch for seizures!

4 comments:

dÊ’ezi said...

Yes.

Stel said...

Oh, Anna. I'll raise you a virtual coffee at Pure.

Accidental Poet said...

I like you so much. thank you for this post.

Nikita said...

I know a FAB paediatrician [and his also a neurological paediatrician] who also specialising in children with neurological problems/learning problems and his a child psychologist. Look up his name in the directory: JA Erasmus [Pretoria]. [He is also known as Rassie Erasmus.] I honestly can recommend him quite strongly. As a teacher, I directed a few Parents to him. Don't be surprised if you don't get an appointment within the first 2-3 months, he is very popular. My sister, who is a nurse, recommended him to me when I was going to hospital with my son and he was FAB. You will not regret going to him. Good luck!