I recently connected with a local group of fellow Down syndrome moms on Facebook. I’m not big on New Year’s resolutions, but it is a goal of mine for the coming year to begin building a support network of parents of children with special needs. I know it’s going to become increasingly valuable to have that shared experience and to be able to talk to parents who understand and can offer information and advice as we navigate Lina’s growing up years.
It has taken me a little time to work up to this fairly obvious idea. It wasn’t so much that I didn’t want to be a part of the special needs community, but more that I was afraid of being overwhelmed and discouraged by older children facing challenges we weren’t prepared to think about yet. This may still be something I have to guard against. It seems to be important, at least for now, to focus primarily on the immediate future and not get too far ahead of myself. I will occasionally run across a mention somewhere of a potential Down syndrome issue I wasn’t aware of, and it never fails to give my heart a little jolt: “Oh. Something else to worry about.” For a moment, my reaction feels like those childhood days when I would close my eyes and cover my ears to shut out something unpleasant. The feeling passes, and I move on. But I don’t care to expose myself to too much of that too quickly.
It has been a growing realization for me over the past four months that I am not raising any Down syndrome child. I am raising my child, who happens to have Down syndrome. Somehow, that makes a big difference. Understanding challenges common with Down syndrome is helpful, to a point. I just don’t want to worry too much about issues we may or may not face in the years to come. (Confession: I still haven’t read through those “about Down syndrome” books.) I know challenges will come, but Lina will be unique, as is every child. And when they do come, we will have good resources to help and will work with all our strength to overcome them. It’s that knowledge that helps me move on from those unpleasant bits of information and has helped me feel ready to look for ways to get involved in the special needs community. And I probably will pick up those Down syndrome books some, too, at least as a reference when needed.
But to get back to the moms’ Facebook group… One of the members recently posted a link to this video, from Houston, Texas: Waiter stands up for special needs child
I know I’m still rather naive about these sorts of things. Lina is small enough that her diagnosis is not immediately evident to strangers. And in her short few months of life, we have been insulated and surrounded by people who love us and love her and have helped us believe the world will be a safe place for her. It gives me a whole different kind of jolt to realize there are actually families out there who would say something so baldy hateful, so terribly ugly, as “Special needs children need to be special somewhere else.” I understand people who are generally uninformed about Down syndrome and who may say things that are unintentionally hurtful. I can cut them some slack and hopefully help broaden their views a bit, just by coming in contact with my sweet girl. (Not that I won’t still feel a bit defensive and angry.) But I do not understand the kind of willful ignorance and prejudice that would cause parents to say something like that, apparently in front of their children. But thank God, that story is really a hopeful one, where the instinct of the waiter, and apparently of many other people, is to soundly reject that sentiment and to embrace the little boy and his family. I don’t know if we’ll ever find ourselves in a situation like that. We may. It would hurt me deeply, and I might have a very hard time turning my cheek in biblical fashion. I look at my little girl, and I see someone so beautiful, so infinitely precious, who has burrowed her way so deeply into my heart that we are forever intertwined. What a gift that is, and what a gift to know that God feels that same way about her, multiplied a hundred-fold and more. With that confidence, I can face the world and hopefully equip my daughter to face it, too.