#thismomlovestaylor

[bashs-mom-jessie]

Today was a bad day. Scott lost his job so now we’re in a health insurance bind. We can’t afford cobra. It’s 2k per month. I barely make 4K per month so the cobra premium and our mortgage would take my entire salary. And Bash has surgery coming up in July. It’s not enough time to get another insurance company to cover it. And the surgery is a million dollars. It feels like an impossible situation. Everyone I talk to says stay on cobra but they don’t seem to understand that we can’t afford cobra. I don’t know what to do.

And today it’s really hitting me that if Bash doesn’t get surgery he could die. Even if he does he could die. He’s barely even lived yet. I think about myself being 15 and buying my first CD (Taylor Swift) because Teardrops on my Guitar resonated with me so much. I was in love with one of my best friends and he had no idea I existed in any capacity besides a friend. Bash hasn’t experienced that yet.

Bash is 2 next month. On May 31st. It’s funny, my wedding anniversary is May 30th. I spent my 3rd wedding anniversary in labor and the boys arrived 5 minutes into the next day. If Bash dies he won’t have a wedding anniversary. I won’t get to see him get married. I won’t get to see him graduate high school or go to college or get a job or fall in love or get his heartbroken or have kids. I may not ever even get to see him “graduate” from kindergarten. And Auggie, Auggie already carries so much. He’s a toddler and he’s terrified every time one of Bash’s life support machines alarms. I try so hard to protect him from it but there’s only so much I can do. Will he have to grow up a twin without a twin? I just can’t even process that thought, Auggie growing up a twin without a twin. It’s heart breaking. I’m a mess.

[bashs-mom-jessie]

@taylorswift @taylornation @jessietheswiftie

It’s okay if all you did today was breath.

#BeLikeMeredith She’s out here teaching life lessons

@taylorswift @taylornation

[bashs-mom-jessie]

I’m really scared right now. I’m really scared for Bash. This virus is terrifying. Bash already has lung disease. Auggie does too, his just isn’t as bad as Bash’s.

Right now in Indiana my grandfather is in an ICU with a cascade of organ failure that can’t be reversed and he’s dying. Tomorrow they will take him off life support and make him comfortable.

I can’t even go be with him because of the risks to my kids. It’s not even just coronavirus.

If my kids get coronavirus they could die.

If my kids get anything else that lands them in the hospital they could get coronavirus and die.

If my husband or I get coronavirus we could die, but even if we survive it our kids could die because there isn’t a lot of people who can care for them, especially for Bash with all his medical complexities.

If the virus continues to spread and people continue to need ventilators we could run out of supplies for Bash’s vent and he could die.

If we run out of masks and we need to access his port he could die from sepsis if we’re not sterile.

If I don’t get the hydroxychloroquine I need to treat my spodlyoarthritis because of the nationwide shortage I could go into a severe flare get sick and die.

If the company that rents our vent to us try’s to take it for hospital patients what do we do? There’s already talks about taking portable and backup vents from homecare patients. Without his vent Bash will die.

This is terrifying and I do my best to keep positive and find the joy in life and just generally cope with everything but right now I’m terrified and having trouble managing in.

Good thing my therapist is getting telehealth up and running.

[bashs-mom-jessie]

Our February 2020 NYC trip - Bash’s 2nd embolization surgery for his VOGM

PART 3

[bashs-mom-jessie]

The anxiety is a little better today. Bash and Auggie had a great day. They played and were happy and have no idea anything is going.

Trump extended the social distancing order. It’s good because we need to flatten the curve but it’s frustrating because more of Bash’s doctors visits will be cancelled or if I’m lucky converted to telehealth.

Our local children’s hospital has had one confirmed case of COVID. That’s really scary because respiratory illnesses go to the 9th floor and since Bash is vent dependent he also goes to 9. So if anything happens where Bash needs to go to the hospital he could very easily be exposed. It’s like when we were there and norovirus ran through the whole hospital as quickly as it does a cruise ship.

This whole situation is just tough.

As I always say, it’s okay if the only thing you did today, was breath.