In the last five years, I have learned more about genetics, hormones, and behavioral therapy than I ever knew existed. At 3, our son Matt Man was diagnosed as Autistic. Shortly thereafter, he was diagnosed with a genetic syndrome, 15 q 24 Microdeletion Syndrome. In short, he is missing 9 genes. He was also diagnosed as having a growth-hormone deficiency.
Evangeline and I are doing what we feel are all the right steps. He is in a behavior program, and will be starting a Developmental Kindergarten program this fall. We have also been blessed to give him hormone injections over the last six months (to continue in the future indefinitely), and the difference that has made has been remarkable.
Yet, for as far as he has come, and for as far as anticipate he will continue to go, there are still many moments where our frustration and mental/emotional exhaustion levels go through the roof, things that if he were "neuro-typical" we most likely wouldn't have to deal with. (Evangeline recently saw a research article which said the stress levels of a mom of an autistic kid are about the same as an active-duty combat soldier).
So I must admit, I got a little irritated recently when I heard a preacher on the radio lecturing parents of special-needs kids about how we need to understand that God made those kids, "knitted them in the womb" with special needs and all, and therefore we should value them like any other kids. To give him the benefit of the doubt, I think he was trying to convey the idea that children, regardless of physical, social, or mental ability, are a gift of God and they need to be cherished as such. It came off, however, as him saying, "You need to just accept the fact that God intentionally made your kid deficient for whatever reason, and you simply need to resign yourself to that."
Which got me to thinking about Mark 2. There Jesus spoke at a full house, so much so that the line of people trying to hear him extended out the front door. Four pushy guys with a paralyzed friend on a mat shoved their way through the crowd, and when they realized they couldn't get in either, they went up to the roof, ripped it open, and dropped the guy through the ceiling to Jesus' feet. Jesus' initial response was to forgive the guy's sins, and afterward, heal his paralysis.
And there are a plethora of other examples where Jesus encounters people who have physical needs and he heals them. Blind people see. Deaf people hear. Crippled men gain strength. Even ol' Lazarus was raised from the dead. And the list goes on.
Back to Mark 2, on the one hand, Jesus' exchange with the paralyzed man proved a point to the Pharisees in attendance. Namely, Jesus DOES have authority to forgive sins, which in turn speaks to his divine character. Yet the man is far from simply being a theological prop to prove a point; Jesus genuinely has compassion on the poor guy. Not only that, he sees the faith his friends have, that if only they could get him to Jesus, He could heal the paralysis.
I like to speculate as to the reason why the four men came to Jesus in the first place. They brought their friend to Jesus because they thought Jesus could help. But even before that, the notion of any man being paralyzed was, in their minds, unacceptable. Perhaps this paralyzed man was even "knitted" in his mother's womb that way. Perhaps the man was destined to be crippled from the time the egg was fertilized. Even so, on some level, his friends determined that being crippled was unacceptable. The fact that Jesus would help him suggests that even our Lord agreed.
Not only that, but blind men begged healing from Jesus because blindness is unacceptable. Deaf ears are unacceptable. Crippled limbs from birth are unacceptable. Even death is unacceptable. In the same way that all these things are unacceptable, I wonder if nine missing genes is also unacceptable.
So you see, mister radio preacher, our son has a special need, and we see him as a gift. We love him and adore him and cannot imagine our life without him. But a blind man asking to be able to see is not unreasonable, even if he was "knitted in the womb" that way. It is not unreasonable for a deaf man to ask Jesus to open his ears. It is not unreasonable for a crippled man to ask Jesus to heal his limbs. It is not unreasonable for a paralyzed man to ask Jesus to let him get up and walk. So again, I wonder if it is too unreasonable for me to ask Jesus to give Matt Man the genes he is missing.
The tricky part is understanding that IF Jesus were to give my son his genes, Matthew would not be the same kid. For five years, we have gotten to know and fall in love with this particular kid as he is. Would I be willing to trade who he has become for the kid he would be, if only he had those 9 genes?
Maybe I would. For as far as he has come, and as far as we anticipate he will go, he will nevertheless live a very difficult life. There is a good chance he will need to continue taking hormone shots for the rest of his life. There is a good chance he will always have difficulty making friends. There will be a good chance that all of the things that come so naturally to most people, things we take for granted, will always be foreign to him. All because he is missing nine measly genes. If Jesus could raise ol' Lazarus from the dead, certainly he could give my son those genes, right?
In conclusion of my little exhaustrated rant (no, I didn't misspell that word), here are some things I've come to know. I don't speak for all parents of special-needs kids, but to some degree, we might all agree:
1. We know what a special gift our son is. Even if he was "knitted in the womb" with nine missing genes, we love and adore our little dude. We cherish his life, and if we had to go back and do it all over again knowing that he would be born missing nine genes, we would not change a thing. Frustrations, complications and all, we love our little Matt Man. He could be missing ninety genes and we would love him all the same. We love Matthew to the same degree that we love our other children; not more, and certainly not less.
2. Loving and accepting who he is does not mean we don't secretly wish things were different. If Jesus were to appear today and say, "Here are those nine genes. Do you want me to put them in?" it would be hard to say, "No." If paralysis, blindness, deafness, and crippled-ness are all unacceptable, perhaps so too is missing nine genes.
3. Parents of special-needs kids don't need a lecture about how we are supposed to be grateful for the gift God has given us, how we are supposed to value our children like any other parent values his/her child. We already know that.
4. We want a safe, non-judgmental place to vent our frustration when we have a tough week; non-judgmental ears that will hear us without giving any advice. Some place like a dumb ol' blog.
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