Happy Birthday #5

Happy birthday my sweet girl! It's hard to believe that 5 years ago today your daddy was telling me to "Try harder!!" as Star Trek was only 45 minutes away. You were a good girl and came with plenty of time to spare but the moment he laid eyes on you, all thoughts of Borg and deep space were instantly vaporized. The midwives only stayed a short while and then left us to get to know you and start our life as a family together. Who would have thought that years later we would be where we are now. It's been a bumpy road kiddo and you have endured far more than your fair share of hardships but you are a fighter with that never say quit attitude - unfortunately that also extends over to things like spreading peanut butter on the tv and emptying the pantry. You never do things "little" and it's that all or none, go hard or go home spirit that has kept you going thus far. Even when things are rough, you always have a smile or a giggle and a belief that hugs can truly make things better.

You have taught me so much over the course of your life. Because of you I see the world differently. You have taught me that sometimes it's the little things that are important and that it's ok to simply live in the present. Forget worrying about tomorrow but rather make each moment count as it comes.

I love you to pieces my girl and pray every day that tomorrow will be a little bit brighter for everyone.

Wondering.....

If my family had to get hit with some life altering event that has long shot odds, why couldn't we just win the lottery or something???

There is really nothing that can prepare you to hear that your 4 year old daughter is never going to grow up. There will be no sleepovers with friends, no shopping for prom dresses or sharing motherly wisdom. There will be nothing but memories of a valiant little girl who fought so hard and lost so much.
Today Trent and I got the bad news we have been waiting for. Tatyannday a was diagnosed as having progressive myoclonic epilepsy also known as Batten's syndrome or Batten Disease (late infantile onset). Our suspicions were confirmed once we arrived at the hospital to find that the neurologist had booked a conference room and was coming in on her off. Things grew more ominous when we were informed that a nurse and social worker/support staff would also be present. While I really wished that I would have better news to share and that the ordeal of the past few weeks could be filed somewhere next to "cancer scare 2007" (yeah i know, I never did tell you about that one) I knew deep down that it wasn't meant to be. I wish somehow that made things easier. At this point I'm numb. I could feel my psyche slide into survival mode as the information was divulged. While I've held my sobbing husband and felt my whole world come crashing down, I have yet to shed a single tear. I know that won't come until later. When all the house is quiet and everyone is asleep. In some ways I hate that I'm like this. Things would be so much easier if I could just let my guard down and allow someone to console me when things get tough but at the same time there's a well-trained part of me that's not willing to let that control go.

Tatyanna my sweet girl you have endured far more than any child should ever have to with more courage than most adults. My heart is breaking and my soul aches. I truly wish that I could make this all go away.

***

It lurks in the dark recesses of my mind, whispering to me. Taunting me with the promise of knowledge it knows I crave. I can see the name written in bold letters but I dare not say it aloud. I won't give in. Any satisfaction that can come of doing too much research at this point is not worth the weeks of anxiety that would surely follow. I'm not usually like this, but the stakes are different now. I've done a preliminary consult with dr.Google. My suspicions were confirmed. The syndome in question is progressive, a one-way ticket with only a modicum of hope that its onslought may be slowed. I feel weak, nauseauted, impotent. How does one even begin to fight a battle that cannot be won?