Wednesday, October 1, 2008

October: Down syndrome Awareness Month (post #1)-An introduction to our story

Today being October 1st kicks off Down syndrome Awareness Month. Many bloggers are committing to blogging something related to Down syndrome awareness or their personal experience raising a child with Ds every day of the month...31 posts for an extra 21st chromosome. Knowing myself I decided I better commit to only 21 own version of sorts....I'll be posting 21 times in honor of Reid's extra 21st chromosome. Next year I'll try and do the real deal and post all 31 days.

As I thought today about how to start this commitment, where to start, what to write... I saw Reid, who had found his way into my office, waving hi to a picture in there. The picture was the one on top. This was actually our Christmas card picture for 2006, taken just weeks before Reid was born on December 28, 2006. Now... I have to preface this by saying I have not posted any pictures of myself on this blog, purposefully in part and in part because I realized I am never really in pictures...I'm always the camera holder. So, never posting a picture prior and now having my first one being 8 1/2 months pregnant and 50 pounds heavier than normal...well, let's just acknowledge my bravery for a moment. :)

But, the more I thought about it I thought this picture was the perfect way to introduce our story. At the moment that picture was taken...just weeks before my delivery date, we had no idea how our world was about to change...We knew we were having a boy and that his name would be Reid Maddux, but we didn't think we were going to be "the one".  Our prenatal AFP test came back indicating we had a 1 in 18 chance of having a child with Down syndrome. We wrestled with the numbers for a few days and talked about what that would mean for our family if he did have Down syndrome...but there was never a doubt that we would keep him, no matter what, he was our son. We refused an amnio because neither my husband nor I wanted to take any chances of a miscarriage, Reid was too precious to us to take the risk...and we had waited so long to get pregnant again after Luke. (Do you know how hard it is to refuse an amnio? We kept being asked over and over again if that was really our choice and if indeed it was we had to put it in writing with our signatures, to protect the Dr. office from a "Wrongful Life Suit". Are you kidding me??)

Reid was actually an invitro baby after many years of trying to get pregnant unsuccessfully. We even started out with twins, but lost the other baby at 10 or 11 in my head I kept thinking that that baby's DNA may be what is throwing our numbers off. I even had a neonatologist concur that that could indeed be the case. We continued to be monitored by a specialist to check for hard markers for Ds and there were none...we spent several visits going over his heart, and there was no indication of any heart defects...

"We weren't going to be the ones" so we did not do any research on Down syndrome...we just smiled at the camera for that Christmas picture and continued on with our details of preparing for another little one in the house. I am glad for this. I know many people who are grateful they knew, but I happen to be one who was grateful I did not know, I would have worried.  

Our delivery date came, our little boy arrived, and were told the news...that we actually were "the ones" and that he also had a pretty severe heart defect. We cried, we fell to our knees literally and figuratively, and were set on a new path...and here I am now blogging about it, funny how life happens. 

We don't cry anymore over his diagnosis, and had I known then what I know now...I wouldn't have cried a tear. Our little one is amazing, he is excelling, he is precious, and I couldn't imagine my life without him. 

I am hoping in the next 20 posts to share some of what we have learned and experienced in the last 21 months while on this new path.


Hector and Jennifer Varanini Sanchez said...

I look forward to your next 20 posts :)! I hope to write as much as possible this month as well.

Kele said...

Well, all I can say about your picture is, 'as beautiful on the outside as you are on the inside'. And after reading this post and being so moved, I am bummed we only get 21 ... LOL! But I will settle for that!
Your amazing Cheri, really. Your family is beautiful and I am soooo glad to have met you!!
Can't wait for our 'date' friday!!

Heather said...

First off,you look better than me any day of the week, even pregnant and 50 pounds heavier."If I knew then, what I knew now,I wouldn't have shed a tear.",I was given that same advice by another mom when Zoey was first diagnosed with her Infantile Spasms.She said it,I heard it, but I didn't start living it, till some time later.Now,I pass it on every chance I get!Beautiful start to your October blogging.

Denise said...

Thank you so much for your post! I found your blog through Kele's. My daughter Morgan has DS as well and is 2 1/ you I had no idea she had DS. I can totally relate to this first post! I look forward to the next 20 posts.

Between you and Kele I may have to create a blog for Morgan and I! haha


Cheri said...

Denise, If you started a blog I would love to peek in on you and Morgan! :)

Thanks for leaving a comment and letting me know you found us...I am kinda new to this whole blogging thing too...but it has been such a great source for me to learn of other families who are walking this path with us! :)

Let me know when you take the plunge! :)

jenhiatt said...

You look amazing for being pregnant! Better than me, that is for sure!!!
You are a great writer, I look forward to more this month.

Michelle said...

Thank you for sharing your story! I had a 1 in 88 chance from the results of my AFP and no markers on the u/s. We also declined the amnio; I was too afraid of the risks. Both of your boys are adorable!