My wife and I gave birth to a special needs child back in 2008. It’s hard. We love our little guy as much as any other child we have, but if we’re to be honest life is harder with, than without a special needs child. I have been told by several people over the years that they could not handle it, and because of that, they would have aborted. The first of those comments came only weeks after my wife gave birth to our son, and the last comment like that, or most recent, came only a few months ago.
The difference that separates my wife and I from the people who make such comments, I believe, is the love we have for God. You see, my very first child was an “oops” when I was age 15. He knows this, and he knows I love him deeply, but the truth is, nobody tries to have a child, for the child’s sake at 15. I swore to the woman who is now my wife, that I would have no more children. But, she did such a great job with my son, who wasn’t even her responsibility really, that I finally caved and gave her a child of her own. Then in 2006, God saved me. Within a year of my being saved we stopped preventing children because I believed I was being pressed to have more. It was that decision that would lead to the birth of our special needs child.
Our five year old today is functionally a one year old in many ways. He’s the size of three year old. He can’t talk, he’s just starting to use signs for communication, and he’s not potty trained. He spent the first four months of his life in ICC and NICU. We thought for the first month of his life, that he would surely die. He was born at 25 weeks gestation, and weighed only 1 pound 5 ounces. He has been re-hospitalized, since leaving the NICU, on at least two different occasions for pneumonia.
We have had to gate our house up so he’s restricted to only a certain areas so he’s not hurt. He’s been like having a baby in the house for five years. Those who would choose to kill him, while wrong about their choice, are correct that he is hard work. We are constantly grateful for the people who not only offer to help, but insist on it. We would be lost without them. But despite the hard work, there are blessings. The basic blessing of just sharing in his life seems to be overshadowed by the work sometimes. But there is one blessing, which until you have a special needs child, you will never understand. He slows us down.
As I write this my wife is in the bedroom with our son. He’s laying on his big brother’s bed, and mom is kneeling on the floor next to him holding his Nebulizer. He’s been sick (just a cold, nothing serious) for a little better than two weeks. Colds have a tendency to move into his chest and turn into far worse things. His “special” condition is Down Syndrome, and it comes with a compromised immune system. Anyways, last night I was the one in there and as I just now walked by from using the restroom, I realized what a blessing those times are. Between the two drugs he inhales through the Nebulizer the time to administer them is just about an hour.
One hour sitting quiet next to him, making him comfortable, while a loud machine buzzes away atomizing the medicine for him to breath leaves you with a lot of time to think. It slows you down. As I knelt with him last night I remembered to pray for him. Not for material needs, but for his soul. It led me to pray for my other children, my wife, for people who have rejected or turned away from my family and for members of my church. It gave me time while praying to just sit quietly, the white noise of the pump blocking out all other sounds in the house, and just listen.
My special needs child is a blessing. Parents can have children with the flu, and not slow down enough to really spend time thinking about others in a deep way. We tell people, “I’ll pray for you.” And then we do it in what is often a rushed, or passing way, treating God as if he’s some sort of vending machine. Sitting there gave me time to realize that: While I have not worked in five years, I can’t find a job, people mock how we spend our money sometimes by judging things they do not know about, my family rests less than one check from the streets, I still have never gone without a meal, my daughter always has a bottle when she needs it, we have clothes on our back, and I have a roof over my family’s head.
While I frequently thank God for these things in hurried prayers before dinner, or as I’m passing off to sleep, my special needs child offers me a chance to come before God and worship him with gratitude in a way I know for a fact many of you will never experience. I can readily admit, that if it were not for my special needs child, I would never experience the kind of relationship I have with God. I can fully understand why people might think they would abort because it’s so much work, it is. I can see why they would be scared of all the things that change when a special needs child is born. But what they don’t see, and what they can not understand, is those things are not a burden…They are blessing. A blessing that I too fail to realize on far too many occasions.