October is Down Syndrome Awareness Month: Acceptance

I’d venture to guess that regardless of where you live, or what country you call home, the reaction of individual parents who receive the news that their newborn baby has Down syndrome — whether that information comes at birth or during  pregnancy — are more similar overall than not.  It’s likely this similarity is the reason so many parents of newborns with Down syndrome are provided, at some point usually early in their new journey, with the “Welcome To Holland” story that was given to me to help me “get over the disappointment” of having a child with Down syndrome instead of the typical child I was expecting. 

Personally, I was never disappointed! Honestly!

It amuses me that so many adults enter into this parenthood-thing with hard-core expectations of what it’s going to be like to be a parent… complete with a specific vision of who or what their child will be. I’d also venture to guess that if you asked MOST parents — of children with or without Down syndrome or any other special need — they’d tell you that their pre-parental perceptions were somewhat misguided about how their children would behave and about how much hard work and sacrifice this parenting thing requires. 

Yet, we parents of children with Down syndrome are told that it’s OK to mourn the loss of that “typical” child we thought we were getting until we gain some acceptance of the child we ended up with.  Like we got the booby prize but we’ll eventually learn to love “it” anyway.  As though Holland could never be as nice a vacation destination as Rome even if you picked Holland in the first place.  I recognize that this thought process helps so many parents come to terms with the diagnosis.  But doesn’t it sound a bit odd when you read that sentence above?  The child — or children — I got are not booby prizes!  And I am not mourning the death of the typical child that died in-womb and was mysteriously replaced by this one (or two) I got.  My children are exactly who they are supposed to be.  In reality, the funeral should be for our unrealistic EXPECTATIONS that rightfully died.  It’s not that Holland isn’t a beautiful place to vacation, it’s that we mistakenly thought we were going to Rome.  The problem is NOT the destination we ended up in, it’s the full blown and unrealistic EXPECTATION of adults who thought they knew exactly where they were going and that it was somewhere else than where they ended up.  By the way, this sentiment describes many a parent of typical children that I know too!

I do not disagree that THIS life I’m living is not quite what I’d expected my life to be way back when I was 20-something years old and dreaming of what my prince might look like.  I can tell you that my fairy tale visions of life had all but vanished from my memory; replaced by a completely acceptable reality as a function of all the wonderful dates (note the sarcasm font) I had that contributed to the demise of those unrealistic dreams and set me up for life-long unconditional acceptance of whatever came my way… long before I ever seriously contemplated actually having children of my own.  As a dreamy eyed young lady, I knew without a doubt that I wanted to have children some day.  And as a not-so-young adult finally contemplating marriage — the ring already on my finger — I gave very SERIOUS thought to WHY I wanted to have children of my own.  Not that my resolve to have them had changed at all… but I felt compelled to examine my reasons WHY I would have them. 

In a nutshell, I wanted desperately to share my love and knowledge of this wondrous world that God gave us with a child…. this despite acknowledging some nasty developments in the world (like 9/11 though that did not occur until I was 8 months pregnant with my first child).  I wanted to be a part of forming the peaceful and remarkable future of our society by teaching my children, and for them to teach their children, to be universal citizens of the world.  I wanted to share my laughter, my faith, and my love with my children and to have them share theirs with me… I wanted to see the world again, and forever, through the innocent eyes of a child.

Yes, I always knew I’d absolutely have children!  But my expectations had morphed into who I hoped I would be as a parent more than who I thought my child would be right out of the proverbial gate.

That said, early on in my pregnancy, any thought of typical went right out the window as I sat on the OB/GYN’s table, 8 weeks pregnant and wondering whether I was carrying a boy or a girl.  I love a surprise and so I KNEW this was a question that would not be answered  — along with what color eyes, hair and skin tone my child would have — for at least another 7 months.  Honestly, my own expectations of typical went right out the window when the midwife said, “and there’s the other baby!” Yes, I mourned my idea of having just 2 children total instead of the 3 I’d have after birthing these twins.  The next few months dragged painfully by, dashing whatever meager expectations I might have had for a “normal” pregnancy with each pre-natal test and death-defying medical diagnosis I was given.  Down syndrome was NEVER mentioned but absolutely false positive diagnoses of hydrocephaly, microcephaly, viral infections calcifying their brains, still births, vegetative states at birth, painful deaths following birth and more — I could go on but you get the picture.  I was put through test after test and rushed from one specialist to another all subtly suggesting that I terminate because these babies would not be perfect… Might not survive anyway.  And then, I suffered the disappointment of having my own body begin to give out under the physical and emotional stress of carrying two potentially imperfect babies.  I finally asked them all to stop!  I told them no more tests and to just be prepared for whatever might happen at their birth.  I said calmly and quietly — but felt as though I’d screamed it at them — that this would be a matter of God’s will and all that good stuff…

And then, 32 1/2 weeks into what should have been a 40-week pregnancy, I gave birth — Baby A’s idea to come early — to two healthy, breathing-on-their-own baby boys!  4 lbs 15 ounces and 4 lbs 11 ounces at 8 weeks early!  (For those of you who might not know, 5 lbs each is the typical weight for full-term twins.)  My babies were NOT still born.  There was NO hydro or microcephaly.  They were NOT “vegetables”.  There were no viruses in their brains!  Everything, every piece and part that was supposed to be there was working well and accounted for.  10 fingers.  Oh, sorry… 20 fingers and 20 toes.  2 healthy hearts.  All the prerequisite and fully functioning organs.  Two pairs of beautiful blue eyes framed by brown hair.  Nearly 18″ tall each!  Big and Tall despite missing their last 2 growth months of pregnancy and, especially, for being 8 weeks early!  IDENTICAL twins even though they were in two separate sacs (we mistakenly came to believe they would be fraternal twins but learned that 2% of all identical twins split in the fallopian tube and develop in separate sacs like ours did).  And, just between you and me, I had nearly convinced myself I was having a boy and a girl! But here they were.  2 months early and healthy!  ABSOLUTELY COMPLETELY HEALTHY! My two beautiful baby boys! 

Talk about EXPECTATIONS?  NO, I was NEVER disappointed.  Not for a single moment.  I was ELATED!  They were ALIVE!  They were WELL!  They were breathing on their own.  I had two HEALTHY babies!

Within 5 minutes of arriving at the NICU, the NeoNatologist said, “We’re sending out blood tests.  There are… some signs… that make us think, maybe, the boys have Down syndrome.”  I nodded nonchalantly, murmured, “OK.”  FOR ME… it was OK!  It was ALL OK!  That sentence barely registered on the Richter scale given all the other cr*p they’d told me to expect.  Oh, I HEARD it!  And I fully and immediately understood that this was their way of telling me my babies had Down syndrome.   But, I didn’t care at all!  My babies, my boys, my identical twins, were alive and well and breathing on their own.  
So you see, it’s really all about our expectations and not about the child!  My children are, and every child is perfect — perfectly IMperfect — just exactly as they are.  And our expectations are IMperfect too!
Every parent I know that has a child with Down syndrome will tell you that the experience has been an absolute blessing in their life… though many admit that they may not have embraced this notion immediately upon learning of their child’s diagnosis.  Yes, there may be challenges and/or difficulties inherent to having a child with Down syndrome or any other special needs.  But, there are no guarantees with any child — with or without Down syndrome.  I’ve learned that if parenthood is nothing else, it is full of surprises, challenges and/or issues that continuously pop up along the way and often when you least expect them.  These are my expectations. 
That’s life… and it’s a good one!
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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
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5 Responses to October is Down Syndrome Awareness Month: Acceptance

  1. Great post! I used to be very "strict" about my expectations, since having Marissa my new motto has been God will make it work. Now we're pregnant again and awaiting twin boys as well, certainly not in our original plans, but God will make it work because he always does. Down Syndrome or not, God always makes it work. 🙂 I couldn't agree more that it's out own expectations that are imperfect and not our children.

  2. Tara says:

    VERY well said! Our kids are exactly who they were meant to be.

  3. Stacy says:

    Oh how our stories are so different but also so much the same. I feel doubly blessed each and every day. I can't wait to get our guys together someday 🙂

  4. Donna Marino says:

    Beautiful, like a breath of fresh mountain air 🙂 Thank you!

  5. Lisa says:

    >Very well said! Thank you, helped me to look more clearly.

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