I kept my composure today...not really sure how but I did it, but I made it. Believe it or not,
barely is actually enough to count as better then not at all.
The only things that were near me when the phone call from the genetic counselor came in was a tiny, little, tip-of-the-finger sized post-it note and a red pen.----I was only able to sketch out some illegible jargon. When I hung up the phone, I took my itty-bitty note, folded it neatly, wiped away the tears and stuck it in my back pocket.
This week is Mitochondrial Desease Awareness Week.
I miss her more today then ever before. The little princess that once brightened my world with her gentle touch, keen smile and ever-lasting beauty now warms my heart with endless love and distant memories. Hard to believe nearly 8 months has passed since the last time she skipped and giggled all of her cares away. My heart aches for her family. With each day that passes, I become more and more inspired by their faith, courage and strength. True Angels, I must say. I'm not sure how or why God brought us all together, but man am I ever grateful for their never-ending love and support for my family.
In all honestly (despite the cards that have been dealt) God truly is good to me...to Hayden and to my whole family. Somewhere I must of really done something right to deserve the wonderful things in my life and to have the opportunity to share my life with such amazing people. The overwhelming amount of prayers, support and "fans" our little guy has is just absolutely incredible. I can genuinely say it helps us keep our head held high and give us the strength to never settle for anything less then the best with Hayden.
Augh, I just want to throw up. *Deep sigh* I will stop rambling and get to the point.
As many of you know, Hayden saw the geneticist last week. I will spare all of the details and sum it up in one sentance:
We left with no more knowledge then what we came with. The July labs were MIA, the August labs were having "technical difficulities", So they checked his skin with a black light and sent us on our merry way. Yes, we waited 5 months just for that....
It was frustrating---I was so angry. Last week, I just needed to hear something... reassurance that I was not and am not losing my mind...This week I wish I could take that anger back and be grateful for "no news". Juggling the perfect balance between needing to hear something and wanting to hear nothing is exhausting to say the least.
It has been determined that the lab results were enough to warrent further testing and another genetic consultation as soon as possible. So, next week we are scheduled to take Hayden back to the hospital to run a Mithochondrial DNA test and further testing of amino acids. Still not much of anything, except, more trips to the hospital, more needle pokes and more frustration. Need stress? I've got plenty to last a decade, ten-fold.
Really, it could be anything.... or nothing at all. But, either way it doesn't ease the process for any of us nor does it help with my sleepless nights.
So tonight I am throwing away my little yellow post-it note --- and tomorrow I will try to think of a not-so-depressing post as that seems to be all I'm getting around to these days!
