Friday, October 5, 2012

Two Years

Today marks the 2nd anniversary of Trace's diagnosis with Mitochondrial Disease.  My heart aches today.  I've been trying to not think about it all week, but it's in my mind always.  I think about how horrible Mito is, how "lucky" Trace is, how that day played out, how blessed we are to still have him here with us, how awful I feel for the parents whose babies have grown their angel wings way too soon, what I can do to make these childrens lives better . . . 

I believe when you have a child with a disease like Mito you live the process of grieving over and over and over.  It never stops.  You're in denial, angry, sad and accepting.  It's so true for me.  I lived through this process so many times over the last two years.  I try to stay positive & accept this is just the way it is - the way it was meant to be for us.  I've learned it's best to live in that stage as much as possible.  But when I get hit with something new, for instance Trace starts experiencing a new type of seizure, I start it all over.  I can't help it, I try not to be sad or angry, but I guess I'm human after all.  There's been times within this last year that I've even thought "Does Trace really have Mito? Or is this some big mistake?" and then I answer myself "Really? Are you serious?".  I've even asked his mito specialist if she was sure of Trace's diagnosis.  She gave me a kind smile and reassured me he does in fact have Mito.   Lucky for me I have a wonderful support system of family and friends to help me go through this process of grieving over and over and over again.  Oh yeah, and a good therapist too :-)

This past year has been filled with much of the same as the year before - sleepless nights, tons of doctor appointments & therapy, hospitalizations, tests, dosing lots of meds, etc., etc.  But it's also been filled with Trace becoming way more verbal than he's ever been before, achieving some of his goals for speech & occupational therapy, making wonderful memories, lots of family time, eating at restaurants with Trace, snuggling, and best of all lots of hugs & kisses.  I feel Trace has come a long way in the last few months.  The first few were a bit unsteady with lots of regression from his illness and hospitalization in December.  Then everything seemed to level out and Trace has really thrived.  I'm so proud of my little boy to have come so far in such a short period of time.  He amazes me every single day.

What will this next year bring?  I don't know.  I do know that I will stay as positive as possible, enjoy every moment of every day & sleepless night, fight for Trace as hard as he fights, cherish every single skinny-armed hug and sweet kiss he gives, and even love the bad moments because although bad they are still moments we have together. 

Hope, Love, Courage &Faith,


  1. This post made me cry. I'm so sorry, but also so happy Trace is doing so well right now. Praying this year is one of continued improvement and great memories!

  2. I hope one day we have a diagnosis day to remember. Sounds strange, I know, but years and years of testing...knowing something is wrong but not being 100% certain what to call has its own challenges. Of course, I wish none of these sweet babies had anything to diagnose in the first place, but I'm thankful for a community that is so warm and open in sharing our everyday struggles. Trace is such an adorable guy, I'm so glad he's doing well!