Tick tock… tick tock

Well, the day has finally arrived and our appointment is tomorrow 4/17/14 @ 1pm at PCH. We’ve been anxiously waiting to get the test results for Brielle. Is it going to be MPS I (Hurler Syndrome) or ML II (I-Cell Disease)? What obstacles lie ahead for my little Brielle? Now that we finally have the results, I wish I never went looking for answers. I feel crazy just thinking about it; I’m constantly looking at the clock and wishing I could somehow stop time. I get this adrenaline rush, the same kind of rush I get right before starting a race. I just want to run! Run away from reality, I don’t want to accept it; I am in constant denial. However, I am reminded of the harsh truth every time I look at my little baby. The evidence is there, this disease is damaging her  and the more time I go without knowing these results, the more time I am sitting here useless not being able to help her.

I was so happy before the diagnosis; I had accepted my little BriBri with all her little issues; issues that seemed so small before knowing about these diseases. I was so sure we were going to overcome them all; her not sitting up, crawling, walking, her lack of joint mobility, late speech and everything else! I really thought being the mommy that I am (a total push-over), I was going to get this baby all caught up. I have always been a very positive and optimistic... Things always seem to work themselves out, I always find a way to see the bright side. Nothing can really weigh me down, except my children… they are my kryptonite!

I want to thank everyone that has reached out with all the positive thoughts, prayers, emails, texts, calls, etc. Even family and friends that we have not talked to in a while and strangers, which are not such strangers anymore. THANK YOU!!! xoxo

Brielle eating mango!