Happy 1/2 Birthday Miles

Tomorrow will be Miles' six month birthday; I am calling it his 1/2 Birthday.  This should be a time of pure celebration, a day of parades, blimps, fireworks, and red carpets.  But tonight will be a quiet night for me; my thoughts are already drifting inward.  Somber elation, an improbable combination of emotions, is my current state.  Earlier I posted that Jesse's karyotype (preliminary results) are back, and he is not a carrier for the isochromose.  You won't find that post anymore; I deleted it from the blog.  I had concluded that now-extinct post by saying that if Jesse had been positive as the carrier, then we would have to "pack up shop" in the future children department.  I was only looking at the potential re-occurrence of Trisomy 21 as something to be avoided.  And then it hit just a few minutes ago- never in a billion years would I wish Miles weren't here, asleep across the hall, and quietly breathing on the other end of the baby monitor.  Extra DNA or not, VSD or not, uncertainty or not- whatever!  Miles is my life now, having shifted my compass from "me" to "we".  Motherhood has given my ego a much needed overhaul.  And in my earlier post, my tone felt flippant in light of all of my thankfulness and gratitude linked to my son.

I am tearing up now.  These past 6 months have packed in enough living to last a lifetime.  Perhaps the emotional exhaustion from the heart surgery is finally catching up to me, though I doubt I will ever fully grasp what we went through.  We will both carry scars forever.  His scar is from the surgeon's incision.  My scar is from having to entrust my son's life to someone else, from signing that consent document prior to the operation- the document that said he may not survive the procedure. I am scarred from seeing my little baby encased in a multitude of tubes, wires, and bandages, and looking so tiny and helpless on his huge hospital bed.  

I came across another parent blog last week that recounted how she dealt with her child's DS diagnosis.  This parent said she never felt any sadness upon learning about their child's diagnosis.  I was shocked at her ease in receiving the news.  With my eternal need to compare information and situations, I immediately felt like a jerk- I was swiftly revisited by the initial pain I felt when Down Syndrome was first mentioned by Miles' doctor, even as something we simply wanted to rule out.  I wish I could aptly describe the hour that followed our first suspicion that Miles might have DS, but it remains in snippets in my brain.  I remember dressing him in overalls and a little blue baseball cap that morning, and how excited we felt was we headed for what we thought was a routine check-up.  I will never forget that initial sting to the brain as our pediatrician took a deep breath and listed her growing concerns, fighting to keep my face expressionless as we left the examination room, how the tears formed in my eyes as I entered the waiting room, and how I started sobbing once we reached the parking lot.  After reading that entry, I felt like a bad parent for my difficulty at receiving the diagnosis.  A few days have passed since I read that post, and I am now being kinder to myself.  The entrance of Down Syndrome into our lives was a huge and surprising transition- an uninvited paradigm shift.  And if I had to bet, most parents would struggle like we did.  Regardless, I know I am not a jerk for feeling sad.  My tears that day were not for Jesse and me; they were for Miles and the challenges he will have to face.  My tears tonight are for the unnecessary stress I place on my heart.  Silly me, life is already hard enough. 

I now I look back over that day, and all the difficult days we've had since March 7th, and I can smile.  My eyes are still wet, but my heart is much lighter.  My son continues to thrive daily.  Slowly he is unlocking his potential and sharing his secrets with us.  His strength and determination to defy expectation is the greatest gift; it is the light I need to help brighten my dark moments.  I am in awe of Miles.  He is only 6 months old, but he already commands limitless respect from me.  Happy 1/2 Birthday my miracle baby!  I love you more than I will ever know.