Thursday, February 27, 2014

Raising a Child With Special Needs, Part II

Raising a child with special needs isn't all bad; it's just that the day-to-day challenges can be so overwhelming I sometimes miss the blessings. One of the most profound "Aha!" moments occurred on the day we took our son to the neurologist (yes, that day... my "eat ice cream and have a pity party" day).

I was sitting in the waiting room, thinking pathetic thoughts about how no parent wants to be sitting where I am sitting right now. Our son was playing with legos in the "kids corner" of the waiting room. Another couple walked in with their young daughter, who was perhaps three years old. She took interest in the legos and began to talk to her parents - in Afrikaans. My son, without missing a beat, introduced himself to her - in Afrikaans - and invited her to play with him. After about ten minutes of play, my son addressed the girl's parents - again in Afrikaans - and told them they have a "very clever daughter".

I sat, observing this scene from the other side of the waiting room. I didn't know why the other family was there or what challenges the little girl faced. I wondered if anyone had ever told those parents how clever their daughter was. And I very nearly cried, because that's when it hit me: my son may be falling apart physically, but when it comes to connecting with people, he's got it down. He can even do it in two languages! At the end of the day, isn't that what life is all about – meeting people where they are, as they are, how they are, and engaging and loving them there?

Sometimes I have to remind myself of what's truly important in life. I also have to admit that sitting in a neurologist's office is a pretty good place to gain some perspective.


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!

Friday, January 31, 2014

The Beauty of Grey Skies

I don't know what it is about grey skies that I love these days. Maybe because they are so rare here in Pretoria I have learned to appreciate them more. In California, grey skies were the norm for most of winter, but here, the cloud covering is a rare blanket of peace that begs me to slow down, cosy up to all that is really important in life, listen, reflect, and still my soul. I guess even in South Africa, with it's maddeningly inefficient bureaucracy, life can become hectic!

Slow down. Listen to the birds outside the window. Notice the deep greens of the foliage as they sway in uncertain winds. The relentless African sun has hidden itself; come outside and smell the cooled air! Take a long, deep breath. Pause. Just... be.