Friday, June 8, 2012

June 8th, 2012

If you've seen me lately and asked how I was doing I surely answered that I was great.  And I was.  Actually I still am, I just hit a speed bump today (or is it a pot hole?).

I follow the Trisomy Advocacy group on Facebook.  I think I might need to stop.  It's wonderful to hear stories of children with T18 who are "thriving", who are living longer than expected.  But it's so super overwhelming and confusing also.

One of my closest friends happened to call me this morning after I had been reading some articles and watching a very touching video (not about a T18 baby).  I was deep into contemplating how and why I (we) make our decisions and didn't realize the emotional toll it was taking on me.  I couldn't even lie and say I was doing okay (yes, sometimes I probably do that).  I'm sure it wasn't even easy to understand my thoughts through my tears.

It's just so confusing.  I really believe that there isn't a "right" answer/choice, made more evident by the fact that there are no known outcomes.  But sometimes it is so easy to start to question my value as a mom.

I know there is only about a 5% chance that Abby will make it to her first birthday, and I haven't read a single account of a baby making it that far without corrective heart surgery (unless they didn't have a heart problem). What if it was more common to give medical aid to these kids?  What would the statistics show?

It only takes a 50% chance of death from a congenital problem for the medical society to classify the syndrome as "fatal".  In 1972 babies with Down Syndrome were born (I have no idea how many lived at that time, but I do believe their life expectancy has almost doubled since then), after Rowe v. Wade 90% of diagnosed cases of Down Syndrome are terminated.  Are we a society that is so afraid of adversity???  I know there are varying degrees of all syndromes, but children with Down Syndrome are often happy and capable.  They currently have a life expectancy of around 50 years old.  I'm not meaning to simplify their life, but it blows my mind that they are so easily discarded.

Okay, that was really off the point.

So I get myself stuck... wondering why I'm not fighting harder for Abby.  Yes, I'm growing her and letting her body decide when it's time is over.  But why am I not even inclined to fight, to find someone who would perform surgery?  If one of my other children was given a 5% chance at life you can bet your ass I would be doing everything possible to keep them with me.  Why am I so comfortable (that is way too light of a word but I can't find a better descriptor) not fighting harder for Abby?  (And clearly I am not "so comfortable" as I'm still feeling confused about this.) I know the love I have for my children, why am I willing to accept this behavior towards her?  The only answer I've been able to come up with is that this is the only life I've expected with her, and that even children who have T18 without heart problems don't live long.

I wonder what my other children will think someday?  Will they wonder about the decisions I (we) made?  Will Trisomy children be given more or less of a chance?  Parents are fighting so hard to change the treatment of these kids, at the same time more families are choosing to terminate the pregnancies.  I wonder how many of the parents who fight for their child would have ended their life, because more often than not it's families that were unprepared for a baby with T18 that are telling the success stories.  Which leads me to believe that they probably had softer markers, and maybe more of a chance in the first place.

I wonder how I will feel once I have held her precious little body in my arms?  Whether she is born into my arms or heaven, how will I feel when that moment arrives?  Will I be drawn to make different decisions, will I question myself more or feel more at peace?

And I hope that our actions towards Abby do show love.  Because we do love her, and she has already brought us so much joy.  Our hearts are bigger from the love we have for Abigail, grown from a deeper compassion than we have known before.

When my kids read this years from now I hope they know deep in their heart how much we love their little sister.  How open our hearts are to cherishing her during this life, and how much we look forward to a time when we are all reunited in heaven (not too soon).  And I hope they know I will fight my ass off for them every step of the way, even if it doesn't look/feel/seem like I am doing that right now for Abby.

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