Having a child with special needs is a lot like running a marathon when you've only prepared for a sprint.
Everyone understands that parenthood requires a level of commitment. But there is the general belief that even though these tiny people will require all of your strength and energy at first, they will eventually grow independent and competent over time. So you train and prepare for a sprint. You know that this is going to be tough but exhilarating. You are ready. You stand in your sneakers at the starting line, awash with hope and excitement at the feat you are about to undertake. You think you can see the finish line off in the distance, and you're prepared to give it your all. You plan and dream about what you will accomplish, hoping that your training and preparation will pay off and you will be swift and efficient.
As you start off running, you feel the wind on your face and see the smiles of those who've gathered to see you race. They cheer you on and offer their support and encouragement. Everything feels good, and this is what you were training for.
But as you run, something begins to feel off. You can't make out the finish line where you thought it would be, and the other runners seem to have disappeared--long ahead of you. There are a few people along the sides, still gathered to support you in your race but not as many as before. You shake off the feeling and continue on your run, enjoying the beauty of the scenery and the rush of what you've accomplished. Still the race continues with no finish line in sight.
You begin to become weary. It's hard to say what starts to wear out first: the body or the mind. But every time you begin to round a corner, you tell yourself "This is it. It's almost over. I can make it." Until you see at the turn that it isn't the finish line at all. Your heart hurts, your knees are wobbling, but you continue to put one foot in front of the other despite it all. I can't speak to what it is like when your child has a formal diagnosis, or a "road map" as I call it. I know that it doesn't mean this map provides the exact route of your particular marathon. But having no map at all has been a lot like rounding many curves in the race only to find a new challenge or obstacle that had never even occurred to me as I prepared for a sprint. Suddenly, the race includes hurdles--a feat you are certain you never signed up for, and for which you are grossly unprepared.
Still you do your best, jumping as you can, knocking over a few hurdles and looking back with slight regret. You feel as if you should have known there was a possibility those hurdles would be there, and some insane part of your mind tells you that you should have been prepared and thus able to soar over them. But you have to let it go. If you are constantly looking back over those fallen hurdles, you will never be able to move forward. After all, who can run effectively while constantly looking over their shoulder?
Sometimes all of the second guessing, the surprise hurdles, and the looking back will cause you to stumble. Maybe even fall and scrape your knee. Not necessarily fatal injuries, but injuries just the same. Pain that makes every step more difficult. You might have to stop at a first aid station to fix yourself up. It's true, caregiving can take years off of your life. And as a "forever parent," this is something that haunts my dreams. I can't imagine not being there to care for Katie or make sure that her life is as beautiful and joyful as possible. It terrifies me to my core. Much more so than the mirage of a finish line could ever shake my resolve. I've made up my mind to simply live forever.
Of course there are good things that happen during this race. People pop up on the sidelines who make a difference in your life. You meet wonderful people who are running a similar race, and you may run together for a time. The scenery is beautiful and unexpected joy is found all along the way. It's never easy, but that doesn't mean it's not worthwhile. This world just isn't set up for people with disabilities. It could be, and things are getting better slowly but surely. But there are many hurdles and obstacles that don't even need to be part of the race. Our culture needs to remove those obstacles and recognize that disability is just another part of human diversity.
I wish I had the answer to the surprise marathon experience. But I am still running my race. And honestly, I don't know if I will have the answer by the time it ends. Perhaps if disability were less stigmatized and more accommodated in life, it would be less surprising when someone has a child with a disability. As I still seek a diagnosis for Katie, I believe that a "road map" would help ease the shock of surprise obstacles a bit. I also know it is entirely possible that her diagnosis will be so rare that there will still be no road map to go along with it. But if we can't use her diagnosis as a road map, perhaps we can leave one for those who follow behind us in the race. All I can do is find my own pace, try not to drag any fallen hurdles behind me, and keep running.