It’s Friday. The post of the week when I try to keep things real around here. Out of no where, this week really caught me off guard, emotionally.
We have been told that a large fraction of the children with Lorelei’s specific type of mitochondrial disease pass between two and five years old. Those two numbers haunt me all.the.time. But there are outliers. There are circumstances and there are reasons. There is hope. But it struck me this past week, if there wasn’t that “terminal component” to our version of “special needs parenting” — how different would I feel? Would a weight be lifted off my chest? Would I worry less? What would my grief look like then? And then, how in the world did I get here?
It was back to school week here. Which means everyone and their cousins have back to school pictures all over the internet. And it’s flipping adorable. But even more heart wrenching for those with a less-than-stellar diagnosis. I cried every time I opened facebook and thought about deleting the app for the week. How in the world did I get here?
I spent 5 hours in the hospital yesterday doing our “normal appointments” and our routine lab work. Thankfully, we are now friends with most of our doctors. We joke with their nurses who all know us quite well at this point. We are regulars for VAT and most of them appreciate my snark. I was shocked when Lorelei had a large amount of blood drawn and she did not even cry. She is almost 19 months old. She should cry. Typical kids would cry. Some adults would cry. But here we are, so used to “this”… the poking, prodding, people and machines, that she didn’t even shed a tear. How in the world did we get here?
I went to target later that afternoon to buy water. Water and diapers. Other than her medical supplies, emergency paperwork, food and prescriptions, I figured water and diapers are the essentials for Lorelei, just in case Hurricane Irma makes a turn towards us. After filling my cart with several things other than water and diapers (darn you Target!!) I found myself mindlessly staring at clothes in the baby/children’s department. While I glancing around I started to get upset and a bit angry. Most of these clothes will not work for us. They all have zippers or too many separates. Why the heck aren’t snaps used more frequently?? And why do onesies stop at 18 months?!? Yes, I know I can find larger ones online - but I don’t want to. I want to find them in Target. Or Walmart. Or anywhere that “normal” moms go to mindlessly buy clothes for their kids and wine for their sanity. I am half a size away from no longer being able to mindlessly buy her clothes at Target. I’m half a size away from having to readjust (again), come up with a new strategy, and hope that I can figure out a new hack so she can one day manage shirts and pants, without ripping out her feeding tube. How in the world did we get here?
It was one of those weeks for me. I found myself grieving for normalcy and battling off the worries, fears and negativity that comes with this life. But when I laid down at night, to binge watch reality tv and unwind, I still found myself thanking God for yet another healthy day and reminding myself that today I was blessed to do all of these things for (and with) Lorelei. <3
By the way! We created a Fridays With Lorelei Facebook page! Follow Lorelei’s story there too!
