Driving With No Hands: Raising Awareness

I am completely overwhelmed.

As of this morning we have surpassed our goal to raise $1,000 for our walking adventure next weekend.

Overwhelmed doesn’t even quite cover it. When I first signed us up I set the goal at $500. It was just a few days before I had to increase that goal. Then a few days after that I had to change it again. And now, a week before The Walk, we’ve reached it.

The overwhelming comes in all of you. All of the people who have come together to show support for my little family. It truly brings me to tears.

In the past I haven’t really felt like I’ve done much to raise awareness for Down syndrome. I felt like my life was all the awareness I could raise. All one has to do is see our family picture to see become aware. I suppose in the thick of raising two children with Down syndrome I don’t realize the lives we might have touched. Sometimes I think I’m in survival mode. Doing what I can to get us through. This experiences has been that chance for me to take a breath and look up. I’ve been able to see that perhaps I really am doing my part to raise awareness. Perhaps we really are touching others.

I’ve learned in life timing is everything. And this experience has continued to prove that. Down syndrome has been in the news quite a bit lately. A new, non-invasive, test has been developed for pregnant mothers to determine if their baby has Down syndrome. The test can be done as early as 9 weeks and is a simple blood draw. No more amnio. This also overwhelms me. Members of the Down syndrome community are very much up in arms. They fear this will lead to in increase of aborting those babies. As it stands now the statistics are something like 90% of pregnant mothers abort when they learn they are carrying a child with Down syndrome.

I realize abortion is a very controversial topic. My own personal belief is that there are very few cases where it is appropriate to abort a baby. Carrying a child with Down syndrome is not one of those appropriate choices. That is the bottom line. There is no grey area.

In some cases there are those that would argue that this new test would allow parents to receive the support necessary before the birth of their child. That could be true. But then I think of our experience of learning that The Boy had Down syndrome. Bleak is the only word that comes to mind. Every doctor, nurse, Respiratory therapist and social worker presented us with a very bleak picture. I can’t imagine being given that bleak picture then carrying a child for 7 more months with extra hormones thrown in.

Packaging is everything. Just like the timing. In addition to the information that is available about this new tests other tests and studies have been done about families with children who have Down syndrome. This one, in particular, just made me smile. It paints a much more pleasant picture than the bleak one we received. And yet the reality is that life with Down syndrome, how we live it, is not always roses and candy. It’s really hard sometimes.

So what can be done? That is what I haven’t completely figured out. What I still feel so overwhelmed about. I don’t want this test to be used as a determining factor whether or not parents decide to “keep” their baby or not. That is just wrong. To those that say they don’t think they can handle a child with special needs I say, “You never know unless you try.” I never imagined, 8 years ago, doing and being capable of the things I have done in that time. If this test is, as what some say, so parents can receive support then that proper support must be put in place. But we can’t make someone use the test for that purpose. I suppose that is the scary part.

I suppose what it comes down to is continuing to raise awareness. That I can do. I can continue to send my children to school, put them in activities, take them to church and so on. The more people that see my family functioning like any family perhaps the more they’ll know. The more they’ll understand. Receiving the “your child has Down syndrome” diagnosis, whether prenatally or post, does not have to be the end of the world. It’s just an introduction to a new world. One that can be just as rich and sweet as what everyone else is living. The trick is accepting the fact that you’re in a different world. It’s through that acceptance that awareness can be truly raised, and truly understood.

So to those that have supported us in this journey in the past 8 years and all those who are supporting us in our walking adventure I thank you. Again and again. Thank you for raising awareness with me. Thank you for reminding me to put my head up. And breath.

The following is links to more reading on the topic: