I was sitting in church Sunday singing a good ol’ gospel hymn about heaven. One of those talking about getting up and walking around heaven. I love good old-fashioned hymns, but this one brought tears to my eyes. All I could think about was my little girl not being able to walk. I know it is silly to cry about something that may or may not happen, but in that moment I just felt an overwhelming sadness that she was missing out on so much.
Abigail just turned three. She has never sat up by herself to play with her toys. She has never felt grass beneath her bare feet as she runs through a sprinkler. She has never tripped and fallen over her toys spread throughout the house. She is forced to go wherever people take her. She is at the mercy of whomever she is with. She has no control over when she stands or when she sits. It is all dictated by others.
Of course she knows no difference. She has no idea she is missing out on a whole world of independent living. She is happy as a clam being able to army crawl around the house and letting us do everything else. She has no idea how small her world is. How limited she is, and how dependent she is on others. In her world she can do anything and everything, and she tries her hardest to make that a reality.
Abigail will get her wheelchair tomorrow. It is hot pink, and we are hoping she will be able to one day (a long time down the road) be able to crawl into it herself and push her own chair. Again, we are a long way from that, but that’s our end goal. I have been excited about this chair for a while now. I am excited she will have a way to get around, and I pray she can push herself in it easily. This chair will bring us some freedom. But it is a little bittersweet. Who wants their child to be confined to a chair? Of course, Abigail is an odd situation where she won’t be in the chair a lot. She does have the potential to walk and crawl, so that’s our end goal and all her teachers and therapists will be working to get her out of the chair and walking on her own. But the chair means she isn’t quite there yet. The chair will bring stares from strangers. The chair will bring pity. The chair will define her as different. Right now strangers don’t have any idea how far behind Abigail is. To them she is just a cute toddler in pink glasses in the grocery store shopping cart. She can get by with her cuteness. But put that same cutie in a hot pink wheel chair and you then invite questions of ‘what is wrong with her?’ ‘She looks normal, but why is she in that chair?’ So we are about to open a can of worms when we take her out and about now. I don’t know if I am ready for all the stares and questions. How do I explain Abigail? I don’t even know what’s going on with her.
All these thoughts have been running in my head these last few days. I know we will make it through. Soon the stares and the questions won’t even phase me. I know I’ll be able to answer people the right way when (and if) the time comes. My prayer is that I always honor my Lord and give my child encouragement in all my responses. I want people to see children who are a little different and know the right things to say. Maybe I can be the educational instrument to guide people’s questions in the right direction when it comes to special needs children. So many people don’t know how to talk to a special needs family. They don’t know how to ask their questions simply because they have never walked in their shoes.
If you ever wonder how it feels to have a special needs child I would tell you it is one of the most rewarding but hardest things you will ever go through. It is draining. It is hard work. It is frustrating. It is lonely. It is disappointing. It is demanding. But it is also rewarding. It teaches you so much about yourself and about that sweet child you are raising. It bonds you and your child like nothing ever could. It teaches you about sacrifice and selflessness. It opens a door to a community you never knew existed. I once read a book that gave a good picture of what I’m taking about. This is an excerpt from Andrew and Rachel Wilson’s book, The Life We Never Expected.
“Discovering your children have special needs is like being given an orange.
You’re sitting with a group of friends in a restaurant. You’ve just finished a decent main course, and are about to consider the dessert menu when one of your friends gets up, taps their glass with a spoon, and announces that they have bought desserts for everyone as a gift. They disappear around the corner, and return a minute later with an armful of spherical objects about the size of tennis balls, beautifully wrapped, with a bow on each one.
As they begin distributing the mysterious desserts, everyone starts to open them in excitement, and one by one the group discovers that they have each been given a Chocolate Orange. Twenty segments of rich, smooth, lightly flavoured milk chocolate: a perfect conclusion to a fine meal, and a very sociable way of topping off an enjoyable evening. You begin to unwrap the object in front of you.
But you’ve been given an orange. Not a chocolate orange; an actual orange. Eleven erratically sized, pith-covered segments with surprisingly large pips in annoying places; requiring a degree in engineering in order to be peeled properly. You stare at it with a mixture of surprise, disappointment and confusion. The rest of the table hasn’t noticed. They’re too busy enjoying their chocolate.
You pause to reflect. There’s nothing wrong with oranges, you say to yourself. They are sharp, sweet, refreshing and zesty. Looked at from a number of perspectives – medical, dietary, environmental – you have been given a better dessert than everyone else. And you didn’t have a right to be given anything anyway.
But your heart sinks, all the same. An orange was not what you expected; as soon as you saw everyone else opening their chocolate, you simply assumed that is what you would get, too. Not only that, but this wasn’t what you wanted. And because you’re surrounded by other people, you have to come to terms with the sheer unfairness of being given your orange, while your friends share, laugh about and celebrate theirs. A nice meal has taken an unexpected turn, and you suddenly feel isolated, disappointed and frustrated.
Discovering that your kids have special needs is like that.”
Yes, that’s my Abigail. She is no chocolate orange, but I love her all the same. She is juicy and messy and very good for me. Honestly, I would choose to have another orange at this point. Oranges are my normal now and I wouldn’t even know what to do with a special treat like a chocolate orange. So even though it’s a little more work and a little more messy I am thankful for my real orange. She brings such joy and flavor to our life! I am excited to start a new adventure in a pretty pink wheelchair. And I invite any questions from you or from onlookers. Please, never be afraid to encourage a special needs parent you see out and about. The very fact that they came out with their child is a big deal. Just let them know they are amazing parents. Every parent needs encouragement and we are parents too. I mean this life is bittersweet, so I encourage you to add some sweetness to a life today!