Can someone please splash some water on my face and wake me up? It’s like the last moment I really remember, the day after my baby shower, we were watching the Super Bowl at a friends house, trying to understand that puppy, monkey, baby commercial. (Which, for the record, I still do not understand…)
And then we were here.
Finally, after 7 months, moved into our new home, with boxes and chaos everywhere. Two days away from my due date, yet seven weeks postpartum.
We have spent the last 8 weeks in multiple hospitals, sifting through fears that no parent should experience until their daughter is 16 and speeding off for the first time with her drivers license and her daddy’s car. Our plans and dreams, haven’t been shattered, they have just imploded all over us and we are trying to piece them back together in a new and different, yet workable, uniquely beautiful picture.
My daughter, Lorelei Elizabeth, was born almost two months before her due date. I somehow wish her timeliness was the only surprise she had in store for us in mid-February. After thorough genetic testing we learned that Lorelei has an extremely rare, genetic, mitochondrial disorder that will possibly change the plans, dreams and visions we had for our kid and for our future family.
She has spent the last 47 days perplexing doctors in the NICU.
We have spent the last 47 days driving back and forth from the hospital, pumping 8 to 10 times a day and praying for a few drops milk, juggling work, moving and life as we know it, eating crappy food on the go, sobbing on the phone with dear friends, overusing terms like “lactate level” and learning the difference between things like the “g tube” and the “ng tube.”
Michael and I have been thrown into a club that we never wanted to be a part of. I feel like our world was this pretty little image drawn on an etch-a-sketch and then some greasy kid that nobody likes, who just sits in the corner by himself, eating store brand crackers all day long, not only shook up that etch-a-sketch but he threw it in front of a high speed train. All of the magical etch-a-sketch sand inside of it blew in a trillion different directions and it’s impossible to ever have the same picture again. But we will buy a new etch-a-sketch. And we will draw a new picture.
We had visions of traveling the world with our daughter. We envisioned years of girl scouts, soccer and prom dresses. We buckled up for temper tantrums or maybe rebellious bright purple hair in high school. We had plans to possibly homeschool and then send her on her merry little way to James Madison University (or maybe Virginia Tech). We prayed for her future husband, whomever he may be. We assumed things would be “normal” for her, like it is for so many.
We never expected doctors to tell us, when our daughter was less than 10 days old, that she is the 31st child in the world to be diagnosed with a specific, rare disorder and that she may not live a very long life.
I am now a NICU Mom. I am now a mom of a special needs child.
And while it seems that our future is writing itself into one of those “Choose Your Own Adventure” Books, and God keeps picking that third, off-the-wall, option for us… we just keep going.
I just keep going.
I’m trying to live for NOW, not the future. I’m trying to find absolute joy when tubes are removed and incubators turn into open air cribs. I’m learning to survive and cope with little sleep and purple nipples. (Damn pump.) I’m realizing that we are surrounded by an amazing village of people, who will drop everything on a holiday weekend and help us move, or will send us meals, toll money, prayer blankets, preemie clothes and baby supplies. I’m thankful for the people who have prayed for us and with us, and who have added sweet Lorelei to over 15 church prayer lists, that we know of, across the country.
Our geneticist told us from day one, we can’t put Lorelei in a box. So we will try not to. Every day we are figuring out who she is, what she can do and loving her every step of the way. This may be far from the way we planned it, but I faithfully believe that God has a plan for this tiny girl’s life and that he will use both Lorelei and her family to glorify Him.
I’m wrapping up the blog post that share’s her birth story… so stay tuned for that!
