When I Said to the Fight, "Make It Quick": Patience in The Wait

 Do you know how exhausting it is to jump through hoop after hoop when you're already exhausted?

Run a 5k

At the end, a sudden hoop

Well, I can do one more thing 


Jump


Land


Cross finish line and take deep, heaving breaths 


Start to sit because it's over


Oh, more hoops? But I'm past the finish line...

Not as gracefully as this bullet of a dog, but you make it through 

Land and almost collapse 

Another hoop

Jump


Fall on the other side, scrape your knees


As sweat runs down your face you look up and 10 more hoops smack you in the face


Fall down


Stay down 


Hoops fly over your head; you close your eyes so you don't see them anymore

When everything is a fight, you either put up your fists and get ready or you drop them and whisper to the fight, "make it quick."

Today I'm whispering "make it quick," as I crawl beneath the covers.

We've been waiting 8 weeks for Asher's epilepsy gene panel to come back so that we could possibly have a direction on how to treat him. Which would also give us a direction to look in for Willow.

I actively waited for 8 whole weeks and I found out today that I was waiting for nothing. Literally nothing. I called the lab myself and they didn't have any record of Asher's bloodwork. So I called the neurologist who looked into it and found out it got to the in hospital lab, but they held it on an insurance hold. No one told anyone about it.

I called Cigna and they never received the claim. At all. Ever.

And it doesn't matter because I thought that while I was waiting, it was ok because over 100 chromosomes were being looked at but instead, his blood (and mine and Isaac's) was never seen.

So we begin to wait again.

I have to say, I just feel done. After this happened with Willow's genetic testing (after only 3 days thank God), I didn't think I could withstand it again because it's not just a blood test. It's treatment and quality of life and hope to find out what Willow has and if Isaac and I are carriers of anything we need to know about. TREATMENT for my son.

We've waited about 60 days. Here's to 60 more. We'll wait because we don't have another choice but today I'm beginning our second wait after I've run the 5k. I'm worn out with waiting. Our whole life is waiting. We work so hard to find answers but answers are fleeting and I just want to give up. The crazy part is this blood work could come back "normal" and we've waited for nothing anyway. This is not fair and I know life isn't about "fair" but THIS IS MY SON. I'm so mentally exhausted and I don't have any inspirational words to end this with. I'll let someone else do it.