So… this post was originally written 6 Months ago. SIX!!! I never posted. Read one to find out why. I have a lot of these hanging out there in draft mode. Why you may ask? Life is complicated, isn’t it? This was written in May(ish) of 2021. I’ll post a little update at the end as well. Carry on!!
Way Back When, in May 2021
Hey Clan! One of my biggest issues is writing and getting things out there. My brain just doesn’t function outside the moment. If you are constantly under stress, you know all too well what that means.
For those of you who don’t, let’s chat a bit. I have a half-written blog post about how busy life has been this past year. It was writing it amid everything happening, or not happening, and causing me to work harder to get the things my daughter needs. Instead of posting it, I let it sit for a couple of days like I normally do, so I can re-read, edit, and finesse a bit before it goes out. I don’t like sounding like a whiny little kid all the time, even though I do a lot of whining on here. I really try not to.
And the post sounded so whiny. I write how I feel in the moment, but it doesn’t necessarily represent me. You can’t bottle it back up once it’s spilled. There’s also a part of me that wants to share it because I know a lot of you go through this as well. Then there’s the aspect of I want you to know that you’re not alone. You truly are not. But to balance the whiny little kid who didn’t get what they wanted for Christmas (yes, that whiny), it’s a struggle.
Why We’re Here
This blog was created so that you, as a parent of a child with special needs, have a place where you can come, read along, and realize that you have someone there who gets you. You don’t have to be isolated, especially during these times of this pandemic, when we need to be isolated to protect the littles.
That’s why you don’t see a lot of posts, and I also regret not posting. There’s a balance I’m trying to achieve here, and in life, and I truly fail at it. 😊 I want this to be a place that you find relatable, but can also find relief in humor. The humor side seems to be missing these days, though.
To be honest, the days have been more difficult than usual. The struggles just seem a little bit harder. It could be related to the extended home time with this pandemic, or it could be related to the amount of effort it takes to get anything approved through insurance, or the growing workload from the day job, just life.
Stresses of a G-Tuber
Maybe it’s Riley’s Mic-key button that popped out about a month ago. We didn’t know it came out until a couple of hours later. For you g-tubers out there, you know the struggle. We couldn’t get the spare in, and just trying was clearly causing her too much discomfort for our sanity. It was also the first time this has happened to her.
We sat for 5 hours in the waiting room before we could get even called back to a room. We had to explain to the doctor the components of the low-profile button, how it’s supposed to just go right back in, but due to time its not happening, which was why we were there. We were in the ER for a total of almost 8 hours. We learned a lesson that day. It would have been smarter for us to drive the long haul down south to the nearest Children’s hospital, instead of going to the closet ER.
Live and learn. Exhaustion is real. We are a special breed of parent, not different from a normal parent, just way more experienced, playing at level expert. But, and that’s a very large but when we’re in the middle of it, we have doubts about our capabilities, like no other.
Just Keep Swimming
How do we do it? We just do. How do we keep going? We just do. There isn’t a choice. That’s also why it’s hard to plan for the future because we just don’t know what that future will look like.
Then there’s fighting for simple needs that are covered by insurance, but damn, sometimes it’s not a battle, it’s a war. Like diapers, wipes, and gloves. Simple ask, right? It’s covered by insurance, I’ve called and asked. But it’s handled through 3rd party billing, and they say it’s not covered. It’s been noted in her file that it is covered, I don’t know how many times. Finally got that aspect worked out, and now they can’t find a company that can provide the supplies because no one wants to work with private insurance. Even if it wasn’t covered, we have the secondary Medicaid to pick up, but we can’t get a denial letter either. Since October 2020. We’ve been fighting this war since October.
This isn’t even bringing up the complications of trying to get medication with 2 insurances.
Life just sometimes gets in the way. It causes you to rethink everything time and time again. And sometimes you just don’t feel the same way about something two days later with 20/20 hindsight. You get a different perspective, think of things on a clear head instead of the heat of the moment.
Seriously, I didn’t even finish it. It’s so true though. What you feel about something one day is totally different the next day. And that changes a month from now. Was what you were going through, struggling with entirely stressful yet necessary? Abso-freakin-lutely.
We fight battles as parents that we should never have to… like for medication. A doctor changes a dosage of medication that due to amount gets put into two separate orders, causing issues with refills and insurance. You need to fight to get the prescription changed, follow up with the doctor’s office, insurance, pharmacy, just to make sure everyone is on the same page. And we’re not talking about saving $10. We’re talking about saving $780. That’s also not a one-time purchase, that’s monthly.
You are literally trying to save yourself damn near $10k a year for one mutha-truckin medication THAT IS NECESSARY.
That’s the latest saga to start 2022 off right.
Ringing in 2022 Like it’s 1999
Not to mention that Riley is sick and has been for 3 weeks. Luckily, even with a possible scare, it’s not Covid, she’s been tested twice. Doesn’t change the fact the poor kid is hacking up like crazy and we’re waiting for a prescription for a suction machine to work through the system.
Life… it’s complicated, not at all easy, but holy cow, when that girl smiles the world seems so perfect. I wish I had a small little hint of that glistening in her eyes, but I’m certain the last couple of years have aged me significantly instead. It’s worth it. All of it is worth it, just to hear Ri smile and giggle.
2022, the year I get it together. If you didn’t laugh through that line with me, we need to work on your sarcasm. I’m trying to get it together, life has a way of doing what it please though, so we shall see. Hopefully, you hear from me more often. I do have a review of a cool (slightly expensive) product that I discovered recently in the world of TikTok. There’s a strong special needs community on there, who knew. So, there will be at least one “TikTok made me buy it” post here soon. Until then, stay strong, stay true to yourself and your family, and Happy New Year from all of us (me) here at Unbreakable Sara!!