A year ago (Facebook tells me so), Kelsey was eating lunch and she spontaneously used her PODD to tell me she loved me and to request a hug. At about the moment I was immersed in my phone and remembering this small (HUGE) accomplishment, current-day Kelsey was saying, out-loud, “Mooommmm, where are you!!????? I want chicken nuggets!” While beckoning me like a tween, (Mom!? What happened to Mommy?!), she was putting together an alphabet puzzle whilest labeling all letters correctly, producing their sounds and a giving a corresponding word to go with the letter (H. Ha-Ha-Horse!). Show off! A year ago I wouldn’t have believed you. Letters? Sounds? Typical four year old understanding? Not possible. And yes, like some of you I say, FOUR? Ben was not as adept as his little sis at this whole reading thing at four. Not even close.
Sure, I shouldn’t compare kids but who doesn’t? Up until now, despite his life-threatening, incurable disease, Ben has won in the development race. He was talking before her, walking before her, and potty trained before her. When Kelsey was diagnosed before she was born (Darkest. Day. Ever), I worried that the baby we had prayed for to take care of Ben would now be taken care of BY Ben. But now…I’m not so sure. For the first season of her short life (are you hearing that word ‘season’ everywhere like I am??), I think they both may just be okay.
I haven’t written in awhile…and so much has happened that I want to share with you; both good (Ben’s 10th birthday!) and bad (Kelsey’s grand mal seizure), but for now I felt called to write for another reason.
When I started this blog, it really was all for me. I needed a place to illustrate what was going on with our unique family. I wrote for therapeutic reasons. I wrote to detail what Menkes meant, what it was like to shop for cute shoes that fit over an AFO, and what it felt like to be in the hospital with your child who was having brain surgery. And I wrote to explain it to everyone from my cousin to my neighbor all at once. Repeating hard things isn’t easy.
After reading a few of my posts, people said “you’ll help so many other parents like you,” but that’s not why I wrote. I was the one who needed help. But lately I’ve been thinking a lot about that mom who has so much on her plate. The mom who is drowning in fear and the unknown and lack of control. The mom who doesn’t see the tough situation she’s in changing any time soon. I want to put it out into the interwebs that there is hope. I so needed to see this post two years ago. Things were so dark, so sad, so scary and I couldn’t picture where we are now. I was losing hope. Things change, the human body and spirit is a powerful thing. Despite a stroke, hydrocephalus, strabismus, hip dysplasia, and epilepsy, we have a HAPPY, smart, sassy little girl. Despite having a rare condition with little knowledge of what the future holds, Ben continues to shine and show Menkes Disease who’s boss.
Everything will be okay. Hang in there. It will get better**. It might not be like everyone else (or my story) and it probably won’t be the dream you once had, but it will be okay.
**If you’re that mom, and you need some advice on how to get “there,” email me: email@example.com. In the meantime get yourself some therapy, Pinot Grigio and a whole lotta Jesus. Yep. I’m that girl now.