What It Really Means to Have a Child With Special Needs
It's surprising how differently parents of sick kids and parents of special-needs kids can feel about the conditions their children have. Some say they hate their child's illness or their condition and that, if they could, they would take it away in a second. Some have a hard time imagining their child without the condition and say this is just how their child is. Others say they wouldn't change anything about their child -- not for money.
Whether we'd like to or not, my wife, Andrea and I can't change the fact that our boy, Jake has Neurofibromatosis (NF). Raising a special-needs child requires extra work. It takes extra time and it causes extra worry. Jake's condition is pretty mild. But parents of kids with special needs are betting on the long run and they're hoping all of that "extra" also makes a family that's extra strong.
Every parent works to teach their children and to help them to grow. But special-needs kids and their parents have to work harder to reach the same benchmarks as typical kids. Setbacks come more often and the possibility of compounding failures is ever-present. Jake's homework sometimes takes five times as long as it would if things were different. So we devise schedules and we make charts. We bargain for progress and rewards. Because things take more time with Jake, we keep an eye out for chances to spend "catch-up" time with Alli, Lindsey, and Brooke (Jake's sisters), and we're careful to avoid taking on too many obligations. We're also training ourselves to notice the things that are hard for Jake as well as the things that he has a knack for. We try to work on the weaknesses and emphasize the strengths.
The good news is that all the extra work, the worry, and all our extra carefulness, borne from the real possibility of failure, these things are all making Andrea and me better parents. We're not great parents but we're alright. And we are better than we would have been if NF hadn't been a factor. And we're not just better parents to Jake, but to all four of our kids, because the things we figure out while we're working with Jake can be applied as we work with our girls.
This concept extends beyond the families of special-needs kids, and out into our communities. Planning parks, businesses and neighborhoods for people with a wide variety of abilities and disabilities takes extra work. It also makes better communities. It makes better citizens too. The more opportunities people have to interact with people who face struggles that are different but no-less real than their own, the more we build compassion and understanding. This is a very good thing, but I think it does something even cooler: it inspires. Seeing people who have to work and sacrifice to have the life they want, who are willing to work hard at things that are easy for many people- that reminds the rest of us of the simple fact that building the life you want takes work. Their determination inspires us to move toward the lives we want to have. It reminds us that being satisfied with a life of comfort and convenience is a cop-out. The people we admire most have not accomplished great things by slipping it into neutral as soon as things got comfy.
So while I wouldn't have chosen that Jake have NF, because it creates a lot of difficulties for him, I'm grateful for Jake exactly as he is and I wouldn't trade him for anything or anyone. I'm also grateful for the way NF has shaped our family. I still worry about what the future may hold for Jake, but for today, we're solid and I'm grateful.
I'm grateful for the love and the constant support of our family, neighbors and friends. We have a lot of people who love us. We also have people who don't even know us who are working to find a cure for our son's condition. We are not alone. The people at the Children's Tumor Foundation have designed some amazingly fun and creative ways to fund research into NF. Sometimes they run marathons. Sometimes they run a Porsche around the track at Daytona. And sometimes they run around the city in their underwear. But it's all for the same purpose: to raise money to fund research for treatments and one day, for a cure.
So Jake has Neurofibromatosis. And the older he gets, the harder it becomes to draw the line between the boy and the condition. This is not because NF defines him; it doesn't. There's a lot more to Jake than NF, which is good to remember because it means, by definition, that Jake is bigger than NF. But the daily struggle he has with NF is clearly shaping the person that he is.
We often describe people by the things they have accomplished or the things they have overcome: "college graduate", "war veteran", "cancer survivor", "mother." Jake has NF and as time goes on, our family will do the extra work NF requires. And because of that we will grow stronger, more dedicated and closer than we would have been without NF. Hopefully our fight with NF can be a gentlemanly one. Whether it is or it isn't, we're sure to lose some skin, but we're going to be alright. And besides, it's the tough fights that make you who you are.