Reading through the Slate article: Rick Santorum, Meet My Son, I find myself torn. As another mom in the trenches, I can genuinely feel her love for her son, and the agony of watching him suffer. She is in the battle, and in the battle, sometimes all we can feel is the battle. Also, though, I wish we could sit down for coffee and talk about who her baby is, inside.
With my disabled child, I have to be mindful of two realities. One, that his brain is terribly broken; his life is often a battle between life and death, and he is partially blind, nonverbal and prone to life-threatening seizures. The other reality is that he has a spirit, and he is whole and alive on the inside. Over the years, all of us in his extended family have had glimpses into his “secret life,” the place where his thoughts and his words are. Inside a broken body is a complete soul. He feels, he loves, he dreams.
I think most mothers of chronically ill children have moments when they think their child would not want to keep fighting for life, given the chance. But then the crisis passes, to some degree, and you and I see the small joys that make their days beautiful, and we realize that he is happy to be alive, to be loved, to have another day with the people who love him the most.
Some day, I’m sure we’ll have the technology to understand to some degree what goes on in the mind of the disabled. It’s my assertion that we will find very little differences in their thoughts and feelings and those that we with relatively normal minds have. I say that, among other reasons, because I have never gotten up close to a severely disabled child without seeing that inner self, that beautiful spirit.
Twelve and half years into this battle, I have an understanding that my child holds a special place in the heart of God, and I don’t take that lightly. I am accountable to God for how I tend this little broken one, here on earth. His life and his death are not my choice, his quality of life is not mine to estimate.
I’m not opposed to honest prenatal testing, where you are given scientific results and allowed to prepare yourself emotionally and medically for a baby with disabilities. I am very opposed to the junk science that much prenatal testing is currently, with overblown false disability diagnoses and the wholesale push for abortion of the even potentially imperfect. Shades of Hitler, anyone? Let me challenge you: the next time you see a disabled person, look them in the eyes. Look past the drool and the damaged frame and look them in the eyes. Say hello, because there’s somebody beautiful in there.
LifeNews Note: Jess Clark divides her time between writing, breaking up fights over Buzz Lightyear, and traveling with a missionary rock and roll band. She and her husband Richy have 3 biological children and recently adopted their 4th. reprinted with permission from Bound4Life’s blog.