Monday, April 2, 2012

What to expect when expecting a child with Trisomy

Aaron and Michael on Trisomy 18 Awareness Day 2011
Here is another video, done by another amazing mom.  Aaron appears several times through here, including one precious shot of his hands holding our wedding rings.

This is in similar format to the popular What to Expect When You're Expecting book.  As parents, when we're given the diagnosis of Trisomy 18 or Trisomy 13, we are told not to expect much of anything.  In fact, what we should "expect" is to have our baby's funeral planned out, not their homecoming.  My doctor could not have been more compassionate or understanding, but she also said there was very little hope.  What she DID say, many times over as time went on was, "Aaron is writing his own book, and we're so glad he is."  No, he hasn't followed the "textbook," but in reality, which one among us does?   The "average person" is not really average at all.  There will always be many places that they excel ahead of AND fall behind their peers.

Within a couple weeks of our diagnosis, I made a rule for myself.  I simply would not read the story of anyone whose baby had not lived at least four months.  I know there was much I could have learned from others, but I wasn't in a mindset where I was able to learn.  And when you're told that chances are your baby won't take a breath, four months seems like a very long time!  I did as much research as I could, but still felt so along on this journey.  I will forever and ever be grateful for those others who have walked and are still walking this path with me, for their love and support.  And I hope I can offer some of mine to others along the way.

And I guess I should admit, I have a special bias toward the picture she chose as the thumbprint for the video.  One of my one or two thousand favorites...

1 comment:

  1. Hi Rebekka, this is beautiful. So much is so misunderstood about these babies. And every single one of them deserves every fighting chance they can get!
    So funny, yes, we will be at tracy/vent clinic on the 11th of this month, 830am! Saweet! We will see you there for sure. if not in the waiting room, our rooms will probably be neighbors. We can't be too far from each other there in the clinic. Looking forward to seeing you two!