“…our baby will be so tiny & small, having her mom’s beautiful feature. Totally in love with her I’ll fall, she’ll be the most beautiful creature…she’ll have small full lips, her face round & sweet. She’ll make everyone’s heart skip, for to look at her will be a real treat…she’ll be intelligent, have her mom’s intellect, analytical & very smart. Wisdom & knowledge she’ll select, no wonder she’ll steal my heart…”
-written for me, Sarah, while pregnant with Lexi

Oh & she was & is everything he said! We didn’t worry about health then. We felt fine. I took my vitamins, drank my OJ, watched my weight. I mean we didn’t worry about our health because we left that up to the doctors. As long as we showed up to each visit, were measured, did our labs everyone was happy. Really, we just wanted to know the gender so we could buy pink. Oh how badly we wanted pink!!!
Little did we know this little girl would have not one but two hidden diseases, VUR & FAP. VU what?  We won’t get into that just yet.

Flash forward 6 1/2 years. “Seriously, is all this lab work really necessary? Everything is always just fine & to be honest I just don’t have time right now.” The appointment setter said, “You’ll have to make a lot more time if you plan on having a baby.” Ugh! Well of course. This was the last somewhat normal conversation I can remember having in that office. That was the last time I could walk in there & see baby bumps on the women sitting in pretty maternity clothes. After some time I imagined which special needs children growing inside which wombs. Statistically they were out(in) there. To be honest, there was really no way to tell which mothers held those precious angels.

Statistically. Isn’t that how it works? I mean, if something isn’t right, it will be found & labeled & we will be told we are one in 2000 with a child like this. 1 in 700, 2 out of 300, a 50% chance, less than 1%…. the numbers go on depending on how you arrange them. We sort of decide where we fit within these numbers. What happens when there is no statistic to measure your situation by or you find you are one in a million? How about this: “Your child is “complicated”. “We don’t have an answer” “I’m sorry, I’ve consulted with my colleagues across the country. We just don’t know.” “Your child will write their own story.” “They’ll tell us what they need.” The worst, “She’ll let us know when she’s ready to go.”

My little girl, Remie, was born with not just one unusual disease, she was born with several conditions & some are still undiagnosed. We don’t know the big picture. We have spent most of her life fighting fires. One condition masks another condition & when that one is figured out the other one manifests for what it is & becomes the newest mystery. I am her strongest advocate. I am her Mom Specialist. I am hopeful that through my blog you will be inspired & we will grow closer to one another in the RUN Family. Welcome to RUN!!!