Neglect

If this blog were a child, it would’ve been taken away from me weeks ago. I apologize for the neglect. There are so many things that I want to update about, yet I don’t have enough time to fill you in on everything.
I’m currently working on an article for The Down Syndrome Guild of Dallas. I wish I could share with you what it’s about, but I’d rather it be a surprise. I’ll elaborate more on that subject soon.

Austin is growing like crazy and doing so many new things. We are completely booked with therapies during the week. I’m proud to announce that he’s graduated from Food Therapy. Shortly after I wrote the previous post, Austin decided to be stubborn and not eat anything. That’s right, another food strike. I do not consider myself a superstitious person. I happen to believe that God is in control, not some silly way of thinking. However, I told myself I wouldn’t brag about eating progress because the last time I did…well, Austin stopped eating. So, let’s just say he’s finished with food therapy because he was ready! In other words, all is well in the eating department.

We had the pleasure of visiting Morgan’s Wonderland last week. Of all places, it’s located in San Antonio, Texas. Morgan’s Wonderland is the first park of its kind specifically designed for individuals with special needs. Did I mention it’s the only park of its kind in THE ENTIRE WORLD?! I had heard fabulous things about Morgan’s Wonderland, but nothing could have prepared me for how amazing it truly was. It exceeded ALL of my expectations.

I need to update more often. I started this blog for 2 reasons:

1) To document Austin’s life and our beautiful journey.

2) TO ADVOCATE AND EDUCATE!

I’m sure a lot of you have heard about the not so nice reference to Down syndrome in GQ magazine. This is the exact reason we (as parents) must continue to advocate and put to rest ALL of the misconceptions about Down syndrome. Individuals with Down syndrome are alive and well. They aren’t “suffering” from Down syndrome. They aren’t just existing, but living. For so long, little was known as far as what individuals with Down syndrome were capable of. Welcome to 2011, people! Individuals with Down syndrome are driving, working, hanging out with friends, going to the movies, texting friends, emailing friends, updating their status on facebook, getting married and living on their own…just to name a few.

I’m often saddened when a stranger learns that Austin has Down syndrome and then asks the all too common question: Did you find out before he was born? Or After?

It’s okay to be curious and I welcome all questions. This particular question always stings a little because you know what’s being implied. Certainly you didn’t know before he was born because wouldn’t you have terminated? My situation is slightly different because we didn’t exactly know FOR SURE if Austin was going to have Down syndrome or not? I had a prenatal blood test and it came back as “high risk” for Down syndrome. I was given the choice (and pressured) to have an amniocentesis by the specialist I was referred to. I was 17 weeks pregnant when I first saw the specialist. When I returned at 22 weeks, he was still strongly suggesting an amniocentesis so we could go over the “options.” I refused because the results wouldn’t change the outcome. I knew I would continue my pregnancy, regardless. And yes, by options…he was “politely” referring to termination. I don’t have negative feelings toward this doctor; he was simply doing his job. 90% + of all prenatal diagnoses of Down syndrome are terminated. I guess he thought I would go with what the majority of women do when they are faced with this decision. I realize a lot of women out there do choose an amniocentesis because they want to know and be prepared. Unfortunately, there aren’t many of us whom decide to continue our pregnancy. This is a reminder that we must educate others. I think most women terminate because they’re scared. The unknown is scary. I think we can all attest to that.

I can’t imagine my life without Austin. I’m not heroic for continuing my pregnancy, even though I knew there was a small chance my child might be born with an extra copy of the 21st chromosome…which just happened to break off and attach itself to the 22nd chromosome.. It bothers me when people tell me, “I don’t know if I could have continued my pregnancy. You’re so (insert uplifting adjective here). I realize intentions are good… but I feel that if more women were educated on what Down syndrome is (and IS NOT!), it might not be so “out of the norm” to continue a pregnancy when you know your child will have an extra copy of the 21st chromosome. I don’t care what situation it is, when TERMINATION is the “normal answer” to a diagnosis- something is terribly wrong. Someone is truly misinformed.

I'm so thankful  to be considered "out of the norm." :)