One Year

For the past two weeks, I have been trying to write this blog post.  I have so much on my mind.  So much to say.  But every time I sit down at the computer, I manage to write a few words or get out a few sentences...but then I stop.  Some may refer to this as a writer's block.  I like to call it emotional exhaustion.

See, October marks exactly one year since finding out about the omphalocele diagnosis.  I remember driving to my ultrascreen - excited to get a peek at my little one and confident that everything would be just fine.  I remember laying on the examination table with my tiny twelve week baby bump exposed for the ultrasound technician.  I remember her spending lots of time looking at my sweet baby.  Too much time.  I remember sitting in the hallway while other expecting moms were coming and going much quicker than I was.  Fear and anxiety began to fill my soul.  Although it took another week to get the diagnosis of an omphalocele, I knew sitting all alone in that hallway that my life would never be the same.

I admit - receiving a diagnosis like that is never easy to hear.  And after going home and researching every little thing that we could about this condition, we were prepared for the road rollercoaster ahead.  (Or as prepared as any parent ever really can be.)  We were prepared for our growing baby to have other anomalies or birth defects, including an incompatibility with life prognosis.  But not our little one - his chromosomes proved to be perfect and everything else grew right as planned.  Then, we were prepared for him to have long-term breathing and feeding difficulties.  But Hayes got off of all breathing assistance after three days and was taking full feeds after three weeks.  Even still, we were prepared to spend many months in the NICU as his omphalocele healed.  However, our little fighter came home just in time to celebrate his first month of life.

Are we blessed?  Absolutely!  Hayes is the most amazing little boy, hands down.  And I would not change one single thing about him.  However, has this journey been an easy one?  No way.  Not even close.  It was brought to my attention that from previous blog posts, it may sound as if we are just kind of smooth sailing lately.  Family visits, play dates, and fun toys.  That is my fault.  For the most part, I try to keep this blog uplifting and light-hearted.  I failed to mention that if Hayes and I are hanging out at home (and that is a big IF - between appointments, therapy, and taking care of other necessary business), our time is spent frantically working on age-appropriate skills to ensure that those critical milestones are met.  If you think that Hayes just rolled over or began sitting up on his own like other babies may, you are wrong.  He did those things because we work on them constantly.  Over and over again.  If his eyes are open, then we are working on something.  And the work does not end when Hayes goes down for a nap.  In fact, as I sit down either at the computer or with piles of paperwork around me to try and sort out the madness of our lives - I feel like it is just beginning.  Arguing with insurance companies, paying on the stacks of medical bills, writing lesson plans and trying desperately to keep up with things at school...  No matter how much I do, it seems as though my work is never done.

This past year, I have cried more tears that any mother should in her entire lifetime.  I have paid enough in medical expenses to put Hayes through his first year of college (or more, depending on which college he goes to!).  I have been tested to the limits as a mother, a wife, a daughter, and a friend.  Knowing all of these things, would I go back exactly one year and change the story of our life?  Nope.  Because then Hayes would not be who he is, and this would not be our story.

 One year ago.

Today.
(Actually...this picture is from two weeks ago when I began writing this blog post.  Today he is proudly wearing his helmet!)