It occurred to me the other day, that since I have a blog, and frequently share things I’ve learned about mental health and specific disabilities, some might view me as setting myself up as an expert.
Let me clear up any confusion right now.
I’m just a Mom, and an ordinary mom at that. I’m an individual who has struggles that frequently overwhelm.
I do not have everything together. (And I’m really hoping that I don’t present as if I do.)
We moved 9 months ago, and during that time I have failed to be able to get my son’s medical equipment. He hasn’t had his g-tube changed in over six months and it’s supposed to be changed every three months. But it seems that no one in MS wants to carry g-tubes and if they do, apparently they are incapable of receiving faxes for the prescriptions despite my working with them for months.
Since moving, have I set up any therapy appointments for my son? Nope. All my extra time is spent on the phone trying to get the darn g-tube. One day this week I went through 37 pages of a list of durable medical equipment suppliers trying to find just one who would send the darn thing to me. So during the last IEP meeting for my son I was chastised for not getting my son therapy outside of school. (In my defense he’s been in therapy since he was three of all different kinds, many times a week for years.)
Until COVID, I was fielding calls from the truancy officer as my son often refused to go to school. The one thing I’m grateful to COVID for is that those calls stopped. But has he done work while at home? Not much at all.
We are well into summer weather here in MS but have I bought my daughter any summer clothes or sandals? No. Because I keep forgetting and she has no summer clothes at all.
I can never remember if I took my medication. Which then leads to not taking my medication. Which creates a brutal cycle of anxiety.
I have a list a mile long of things I NEED to do. Because I keep forgetting. Or because I’m so utterly overwhelmed by everything else in my life. . .
So please, don’t for a moment think that I have it all together. I’m just like you. Probably much worse than you. I’m trying. I pick the pieces back up every day and try again. I’m writing not to say, “Hey, I’ve got it figured out. Do it my way.” But rather- “If I don’t write I might lose it. And If I can show someone that they aren’t alone and they don’t have to run into this brick wall repeatedly like I have, so much the better.
Happy Thursday everyone!
