Just trying to stay above water. I was/am having a great couple of weeks, but I should have known not to appear too happy.
Jay is having ‘issues’. Tests tomorrow, pray that it’s nothing.
Oh, and one of the girlfriends has been nauseous the past few weeks.
Not yet, man. Not yet. I just need a little more time.
Incredible. Incredible he’s stayed married to me all these years. Batshit crazy – that must be how he likes his women.
an annoying as fuck little cat? she just yowls all day. yes, she is in heat, thanks for figuring that out for me. Yes, that’s why she’s howling. Yes, I am taking her to get fixed. But that’s not until the 17th. And she’s yowling today. Non stop. Yooooooooooowwwwwwwwwwwwlllllll. Yeeeeooooooooowwwwlllllll.
And she’s peeing. Everfuckingwhere. Jay hates cats. Has only agreed to them all these years for me and the kids’ sake. But when he smells pee? Or steps in it? Or has some bitch pee on his paperwork? Or his slippers? Dirty clothes? Overturned picture frames?
Yes, she’s a pissing machine. She is being tested for crystals. Pray she has some ya’ll. If not, it’s behavioral – and that ain’t what Jay wants to hear.
Anyway. I have to go a new direction on the insurance because of the meds. Bloody hell. This is a fucking nightmare.
I just want to go back to when he was born – back when I knew nothing. When he was healthy and happy and his future unwritten.
Back before the broken bones and the curved feet and the scoliosis. Back when I did not even know Duchenne existed. When I held him all day and spoiled him rotten. Back when he could walk and go to the bathroom by himself. That really really sucks to have to rely on others for your potty breaks. Embarrassing. I try to make it a non-issue as much as I can and chat about school and such while he’s emptying out his bladder. But when the night comes and he has to go #2? Talk about humiliating. Especially when someone has to wipe your ass. He’s 15. He does not want anyone wiping his ass. That poor kid. He deserves every little fucking thing I ever gave him as payback for what he has to endure as a result of the MD.
Maybe i will take a nap.
Yes, I listen to music 24/7. Why the fuck not?
Wait till I’m done dancing… hard to type. Alrighty. dance time over, now a song that makes me cry. Nice. Why do I DO that? I make the playlist. Masochist.
I am still wading through insurance bullshit. I finally think I have one, and WHAMMO – some minor detail that is not minor at all. If by minor you mean Game Changer. I found one that is perfect. Except the fine print makes that plan NOT eligible for the postal discount – so it’s not paid at 75%. So it’s $600 a check. A check. Every two weeks. Fuck you and your mama. I ain’t paying $1200 for health insurance. BTDT, ain’t going back. So, it’s the union plan for me. SHOULD be fairly cheap for fairly decent insurance. When I am full career status, I get the other one discounted as well. Something to work for, I guess.
I feel better today. About my boy and his Duchenne. Not great, just better. Just have to release the …. pre-grief …? … from time to time. It builds up so quickly.
I need a nap.
To break the same heart with the same shitty diagnosis over and over again.
Mar 2010 – Doc tells me some bullshit. My heart sinks at the look in her eyes. I know it’s bad.
March 2010 – Driving home, Jay reads to me from the Internet about Duchenne. I almost wreck my car. I think I have my first panic attack.
March 2010 – We tell the older kids. Their breaking hearts breaks mine all over again.
March 2010 – telling relative after relative, friend after friend…no one takes it well. i match them tear for tear.
March 2010 – initial test results come back – extremely high creative levels. indicative of duchenne. I think of getting in bed and not getting out. Ever.
April 2010 – lab results return – positive for duchenne. My whole world crumbled. There just aren’t any words to describe the feeling you get the moment you find out –for sure — that there isn’t a fucking thing you can do to stop your son from deteriorating in front of your eyes over the course of the next 10-15 years if you’re lucky.
Do I sound crazy or bitter? I am.
May 2010 – More results from dna testing – Deletions 45-52. Whatever the fuck that means. I know now what the fuck that means. It means my son is very close to having a medication that can slow his progression, only so far it’s only available to kids who can walk (in other words, kids that they can measure progress with). As soon as it is approved, he can get it supposedly, but that’s years in the future. I don’t know what our future looks like.
Broken heart every time he falls. Every time he breaks something. Every time he loses another function. Every time he cries because he can’t do something anymore. Every time he coughs or wheezes or can’t catch his breath. Every time we have to sleep in shifts so someone can make sure he’s breathing ok. Every time he searches the internet for more clues to his life. Every inch he gets closer to finding out one day that …. well, he’s going to find out one day, and I’m going to have to comfort him. I don’t have any magic words. I don’t think I’ll have any words at all at that moment. Just a broken heart.