"Differently Blessed?" No, Just Blessed!

"Differently Blessed?"  No, Just Blessed!

The first two hours of my son's life now seem like weeks, etched in my memory like the celluloid panes of a film reel, meticulously unraveling their story frame-by-frame.  Somehow, when I replay them, it takes only moments to tell the tale; yet, I can see them in slow motion if I choose, remembering every shade of color, every shadow, every scent, every intonation and puzzled grimace.  The days of waiting since have been at turns encouraging, painful, maddening and joyful.  It's the waiting that really gets you--the vivid evidence, played out in Central Hospital Time, that time neither waits for any man nor does it hurry.

After five days of waiting for various test results, we finally know more about Baby Cooper's condition.  We know that his heart and lungs are well developed and functioning just like they should.  We know that his digestive tract is working and that he likes to eat!  We know that all his parts seem to work and be just perfect.  And now we know something else about Cooper that's very special:  he has one spare part!  Within the genetic material in all his cells, Cooper carries one extra chromosome, a microscopic body of exquisitely coded information, meant to direct his amazing body to do the things necessary to carry on healthy and normal life, but Cooper carries a "spare."  Our beautiful, perfect, precious baby has Trisomy 21, the genetic condition that produces Down's Syndrome.

How does it feel to get news like this?  Not exuberant or joyful, to be sure.  There are challenges--many challenges, perhaps, ahead for Cooper and by extension, for us.  Are we shocked? Certainly, though there's no good reason to be.  Trisomy 21 happens in about one live birth out of a thousand.  It's not rare--in fact, it's by far the most common genetic mutation in humans.  We knew the odds when we had Sawyer, our first child.  We also knew that there is a slight (slight!) increase in the incidence of Down's when parents are over forty.  There's genetic testing.  We could have done it, but we chose not to.  Our doctor agreed.  We are Christians, trusting in the God we know to be sovereign and immutable.  We fear and we worry and we struggle and we moan and wail and cry....but still, we have faith.  We are weak and mortal, but our God is not.  It's a trite adage found on posters in school classrooms and office cubicles, but it still rings true:  "God doesn't make mistakes."  We believe it.  We chose not to have prenatal tests because we have faith that what God decrees is good and perfect, and we knew that we would not change the course of the pregnancy based on anything we might find out.  Statistically, 92% of pregnancies where Down's is identified end in abortion.  So, while one in a thousand children is born with Down's, this only represents eight percent of those God created with an extra chromosome.

So, how to move forward?  The diagnosis made its initial impact when a geneticist from the hospital visited Kristi's room shortly after blood had been drawn for testing.  She informed Kristi that she was sure Cooper had Down's, even though it would be days before test results came back.  We essentially dumped a satchel of three-ring binders and pamphlets in Kristi's lap and told her, "Don't worry--most Down's kids are sweet and loving!"  This was our unceremonious introduction to the whole thing.  Kristi called me in shock and panic and disbelief.  We took turns having our emotional breakdowns--hers in her hospital room, mine in the van sitting on the lower level of the hospital parking garage.  Comparing notes later, we realized that while we both were shocked and scared, neither of us doubted that we would love and raise this child and that he was a blessing from God!

We have a plan, however brief and tentative:  we love our child.  We learn what to watch for, and we stay vigilant for the potential health and developmental issues that can arise.  And we go on with life!
We laugh and we play, we teach and we discipline and we set high expectations, because that's what we do in our family.  We don't demand the impossible of Cooper, any more or less than is the case for Sawyer; yet, we don't lower the bar for him out of some negative assumption that he won't be able to grow and learn and achieve just like his brother.

Every child has learning challenges.  It's a fact of being human.  I struggled my way through much of my educational history, in spite of an IQ that meant I was well-suited for learning.  Some kinds of mathematics are incredibly difficult to me, even after years and years of trying.  I can't draw anything you could recognize beyond the level of crude stick figures.  Kristi struggled through most of her primary and secondary school years not knowing why she found school so hard, until she discovered her dyslexia and began to unravel the mystery of reading.  Yet, Kristi is an incredible artist and wonderful educator, having gone on to spend years in the public school system advocating for the rights of children with developmental disabilities.  She is a brilliant and gifted person. I have much less on the "talent" end of the spectrum, but I learned that Obsessive-Compulsive Disorder was at the root of many of my study problems, and I have managed to acquire enough skills and knowledge to participate in and enjoy a wide variety of professional and personal activities.  Much as we wish it were, life is not a level playing field for all children.  We don't arrive from our mother's wombs as "blank slates" ready to be filled with information; rather, we all come with some challenges.  All of us have to work through some things in order for our giftedness to shine through.  That's what life in this world is--it's a process of overcoming, of survival, but also of thriving and blossoming and success.  That's what we want for our child.

If you've read this far, odds are you're a friend of ours.  We're blessed with so many!  I'm overwhelmed by the number of contacts we've had via all sorts of media, from a variety of nations and in multiple languages, wishing well to Cooper and us!  So perhaps--just perhaps--you're asking, "How do I participate?  How can I help?  What do they need?"  So, here goes:  First, we need your prayers for us. Perhaps you've heard the old saying that "God won't give you more than you can bear"?  I'm sorry to say, this is what we in the theological biz call "B.S."  It's well-intentioned B.S., spoken in the interest of offering comfort and encouragement...but B.S. nonetheless.  If you read the Scriptures--or even if you've lived a few years on this planet--it should be abundantly clear to you that God does indeed give us far more than we can handle at times.  In fact, the things that are beyond our management are generally the fallout of human sinfulness, not things God purposely inflicts on us--but God does allow them, and He uses them to teach us dependence on Him.  There is an accurate version of this saying, however:  "God won't give us more than He can handle."  And in this, we have supreme trust.  All this to say, please pray!  We need God to show up. (Well, He already has, in BIG ways...but we're gonna need a lot more of His presence with us and His grace that casts our fear and overcomes every obstacle for His glory!)

What else?  Please (PLEASE!!!) do your best to treat us just as if you would have had we not shared this special secret with you!  Do we want to ignore or deny that Cooper has Down's?  Of course not! That wouldn't be in his best interest or ours.  What we do not want, however, is to let Cooper become someone who is defined by Down's.  You know how it happens:  a person develops cancer, say.  Suddenly, in everyone's minds that person becomes "the guy with cancer."  Not Jim or Bob or Ted, but Cancer Guy.  Everyone starts to see him in light of his condition first and foremost.  He still has an identity as a person, but cancer has become the first thing everyone sees when they look at him.  That's what we don't want for Cooper, any more than Kristi wants to be defined by dyslexia or I want to be defined by OCD or you want to be defined by your challenges and shortcomings.  Just help us to be normal and not "weird."  Don't feel awkward about asking questions about Cooper's condition--feel free to ask us anything and we'll do our best to explain.  Don't focus on his Down's, but don't make it conspicuous by not talking about it, either.  We don't want it to be the "elephant in the room" that everyone ignores.  We just want to stay normal--whatever that may look like for us!  And help us love our kids...both of them!  Just continue to bless them as you have blessed us, and let them bless you.  That's God's plan:  we mutually encourage one another and challenge one another to live up to the promise of the Gospel, that God's love can surmount any problem and overcome every sin.

We love you, our dear friends, and we thank God for each of you more often than you probably imagine.  Thank you for loving us and drawing us near and supporting us as we move forward, a day at a time, holding God's hand and figuring out this crazy business of life together!

God's best to you,

Steve, Kristi, Sawyer and Cooper Hawkins