Wednesday, September 12, 2012

Roller Coaster

I hate roller coasters.  I find no exhilaration in ridiculous heights, raging speeds or stomach-dropping hills.  If coerced onto such a torture devise, I triple check my safety harness, close my eyes, and hold on for dear life while muttering a few incoherent prayers of protection through clenched teeth.  The only joy I find is the sweet relief of opening my eyes and realizing I have survived what I was certain would be the death of me.

Samuel's journey into this world and his following diagnosis were the worst kind of roller coaster.  There were unseen drops, terrifying turns, and worst of all, the uncertainty of what may lie ahead.  I was forced to strap myself in and travel a road I never would have chosen.  I spent much of the past two years holding my breath, muttering incoherent prayers and being reminded again and again that I have no control where this ride is taking us or what lies ahead.  Even in our darkest hours, Ben has never wavered in his belief in Sam's future.  No matter the outcome, he has always been certain that Samuel will do amazing things and make a difference in the world.  But I wavered.  I worried.  I held on for dear life to Ben and his unshakeable faith was my safety harness.  He saw the signs that the ride was slowing down before I did.













The summer of 2012 will forever be the Summer of Sam for our family.  







He found his voice, truly, and loves to use it.  He's speaking in three word sentences, and his favorite animal is POR-CU-PINE (said in a deep voice he learned from his Opa).  He speaks in sentences Where ball go? I get da ball! Bus! I hear Bussie! and calls Streetcar Named Desire-style for his neighbor friend, Lila YAYA! 









He found his legs.  After a few days of being unwilling to touch that creepy stuff called grass, he began walking in it.  Then he began walking up the steep hill in my parents' yard.  Loose sand, mud, and stairs are no match for this guy.

Yes, the signs were there that the roller coaster was closing in on the finish.  But still, I had my eyes closed, my breath held, my teeth clenched.  I prepared myself to continue on with appointments, therapies, and specialists.







Then an evaluation changed everything.  Samuel tested within the normal range for every area of development.  No delays.  None.  Our beautiful 30 week preemie with a bi-lateral grade 3 brain bleed is not disabled.  He's not delayed.  He's normal.  Except he's not.  He will never be normal.  He's a miracle boy who beat the odds from the start.  His new pediatrician watched him run and jabber and flirt for half an hour today and couldn't find a single thing to be alarmed about.  She said without his chart she would never guess his medical history is the size of a novel.  She said it's children like him that make her love pediatrics.  She said based on the severity of his brain bleed, he should not be where he is.  But the brain is an amazing thing, and Samuel is downright astounding.


And as I drove away from her office with my beautiful, amazing, super hero of a boy chatting away behind me, I exhaled.  I felt the sweet relief of solid ground beneath me.  What lies ahead is still unknown, as it is for us all.  But I can face it.  My faith is renewed.  My joy is true.  My cup runneth over.