I’m writing this post for someone who can’t but if she could… Well, she’d probably bang out a lot of nonsense since she just turned one year old.
On June 29th of 2014, we noticed our six week old daughter, and eighth blessing, had these pretty little brown birthmarks all over her body. Talking with a neighbor at the pool, we noticed one of the spots on her leg and we started trying to remember what they were called. When we got home that evening, I looked up the name out of curiosity.
Cafe au lait spots. Oh, and six or more is one of the indicators of a genetic disorder called neurofibromatosis (NF). My heart sank. I knew she had several. But I wasn’t sure how many.
The next diaper change we counted. Seven. And one freckle in her groin. Another marker for NF.
Could it be that my eighth blessing had this disorder when no one else in our family had? More research proved she indeed could.
Two weeks later, her two month well check led us to further believe she could have NF with our pediatrician agreeing that her spots looked like NF spots.
Three weeks later our thoughts were confirmed. She did have NF but not only that, what we thought was a swollen lymph node was actually a plexiform neurofibroma. A benign type of tumor growing on the back of her neck.
She has had three MRIs in this first diagnosis year. She’ll have four MRIs by the time her diagnosis year is over. Four x-rays and one surgery. She is in a neck brace because her spine is bending abnormally. A condition called kyphosis.
But our beautiful Emmie. Well, she is our super hero and has been an inspiation to so many people. Certainly, she hates the radiology department at the hospital but she manages smiles, laughs, claps and kisses for her family. She loves to explore, stack and destroy her brothers block creations. Despite being in an absolutely restrictive brace, she doesn’t let it slow her down. She is learning how to walk and balance and is fiercely independent when it comes to eating food.
This is her fight and will be the rest of her life. But she is never alone and not without her super hero sidekicks.