Tuesday, May 7, 2013

Imperfect Children

“Your baby may be at risk for having Down’s Syndrome,” my doctor said.  “I’m not sure though, so I will check with a geneticist and get back with you.”  When you are a certified worrier like myself, those words are ominous and heavy.   They nearly pushed me to “Basket Case” status.

I couldn’t quit thinking about Lonnie.

Lonnie is my dad’s brother born with Down’s Syndrome in 1953.  The doctor’s said he wouldn’t live to be 20.  (Too bad they weren’t around to celebrate his 60th birthday this year.) Lonnie can clothe and feed himself and do simple chores.   He’s not very verbal, but he’s aware of what’s going on and was a real joy to my grandmother until the day she died.  Because of him I have a soft spot for children with DS.  I just couldn’t fathom being the mother of one. 

Waiting for the geneticists’ opinion seemed like an eternity.  Several of my co-workers wanted to know what I would do if my chances were higher.  (What would I do?!?!?! What do you mean?)   I guess they figured I would have an amniocentesis to determine the chromosomal state of my unborn baby.  But I knew that no matter what:  this child was mine – imperfections and all. (Killing our first child just wasn’t an option for his dad and me.) After two-weeks of what-iffing, the verdict came back that I was not at any greater risk than the next woman my age.  I breathed a sigh of relief.

That was 25 years ago, and I now have three grown children with the “correct” number of chromosomes.  Even so, I think about that “what if” a lot, especially yesterday when a friend found out her newborn baby was born with that extra-chromosome, and she will forever be the mother of a child with Down’s Syndrome.    My “What if” is now her reality.

Experience has changed my perspective in those 25 years, and I have some things I would like to say to that young mother:

Your baby is just like any other with his own undiscovered gifts and potentials.  No baby comes with guarantees.  Enjoy the unfolding process.

I’m sure you are experiencing some grief as preconceived dreams for this child die.  The reality is that very few children fulfill their parents’ dreams for them.  They all have their own plans and tend to go their own way. All children would be better off if we parents quit trying to create little “me’s” out of them. Truthfully, your child may spend his life living in the moment.  Well, what’s wrong with that? None of us are promised tomorrow.  Let him teach you. Carpe diem!

Might this baby face special health problems?  Absolutely!  But so may any number of non-Down’s babies.  Life is uncertain for everyone.  He will learn and develop and grow at his own pace…but so does every other child.

Be warned.  Society may disregard him; his monetary contributions may not meet cultural standards.  But who can measure the value of unconditional love and acceptance?  How can you calculate the worth of inspiration?  Many with full bank accounts and bulging pockets have left the world a much poorer place.

Maybe he won’t grow up to be a rocket scientist or brain surgeon.  But maybe (and most likely) he will shine light in dark places, soften harden hearts, bring smiles to joyless faces, and encourage those without hope to keep on trying.

I don’t pretend to know how it feels to raise a special needs child.  But I do know quite a bit about raising imperfect children.  And it is quite likely that your little one with the extra chromosome and those like him are more perfect than the rest of us.  You see, he will always have the faith of a child – the most valuable thing of all.

(Update--- I shared this with the mother this morning.  This was her response:
These are some exact thoughts I've had in the last week. We have really known since he was born he for sure had it but they still have to do the test to make sure it is downs and that is all that is wrong. So luckily yesterday we knew what was coming. It really does change things from day one of knowing your blessing will have complications in life. You worry more about how society is going to treat them and what kind of life they will have and if you will be able to provide for their special needs. And you worry how it will effect the life of your other child(ren). You definitely have different worries than with a non-downs child.)

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