This one may be a short post, but no promises.
For those who know me IRL or via a couple FB groups that I am active in, you probably already know that I struggle with depression and PTSD that resulted from Noah’s birth (aaand I just remembered that I have written about it here too….but hey if you haven’t been a long time reader you may not know that. But I digress). Some days are better than others. The middle of the night is usually the worst. If I get upset about something after around 10 pm, I probably won’t be able to sleep until the early-late hours of the morning (ie 3, 4, 5 am.
Last week Noah went to my SIL’s to give me a much-needed break. It was lovely and I greatly appreciate how amazing she is to offer and to take him off our hands for a few days.
And for me, it was great. I actually felt the best, emotionally, that I have for a very long time.
But then Noah came back and life returned back to normal. Feeling like a slave to Noah’s moods and having to stay in basically all the time because it’s not worth the effort or gas money to go anywhere. Realizing that I now hate birthday parties because Noah can’t handle them. I do believe that he has some sensory issues, and as such I have to avoid places like parks, public pools….anywhere that there might be a lot of children, activity, and/or NOISE.
It’s so incredibly frustrating. I always thought that I would put my child into swimming lessons from a young age. That may never happen. I never thought that I would have to avoid something like a PLAYGROUND. I thought that that would be our haven.
I know I talk a lot about the “how things should have been”. I know it’s repetitive. Really, I’m getting sick of it myself. But I can’t get away from it.
Noah’s baby friends are no longer babies. They are children. They are running, potty training, speaking in full sentences, etc, etc. It blows my mind, really. We went to a playdate yesterday, with two little boys who are only about a month older than Noah, but it was like night and day seeing them all together. The host also had a 2 month old baby….holding her, she was seriously stronger than Noah is. It’s hard to believe how very far behind he is, but yet so obvious once you can actively compare him.
Noah is still very much a baby. He is completely dependent on us for everything. It breaks my heart. People say that “they grow up so fast” but seriously, I wish that Noah would grow a little faster already…..let me tell you, that newborn phase gets old really fast. It feels like Noah is permanently stuck in neutral, so to speak.
Then today I finally tried him out in his new standing frame, and it was a disaster.
It didn’t support his head at all, he was whipping it all over the place. He is wearing his AFOs, it made his right foot twist in. His legs were basically straight. It just looked so incredibly uncomfortable.
So I tried it again.
I put a neck pillow behind him and released the gate so that his knees could bend. It looks much more comfortable but I know that the gate is supposed to be closed.
I posted these pictures to my HIE group asking for help, because I have no flipping clue what I’m doing.
And then I did a full on, hysterical ugly cry.
Because I am so frustrated and so, incredibly tired. And I’m heartbroken that this is our life.
It should NOT be this difficult. My son should NOT have to be strapped into some metal contraption in order to STAND, for pete’s sake.
THIS is what we are going to have to deal with for the rest of his life. Headaches and heartbreaks.
I am bitter and ANGRY, mostly at myself.
I was and continue to be so incredibly naive. I constantly defer to the medical professionals that come in and out of our lives. Every single time one of them makes a mistake or lets me down, I think, “Olivia, you need to do your own research”. And I literally never do.
This stander is bullshit. It is NOT what he needs. It’s not doing anything for him. It’s not teaching him how to stand, or how to use those muscles. It’s holding him, in a slightly different position than he is already always in. He’s already enslaved to the limitations of his brain injury, why am I putting him in this CAGE to further limit him?
In a prone position, he lifts his head, moves it side to side, moves his legs in a crawling motion. In the stander, he can’t even move his legs and bounce like he will if he is not encumbered.
Look at those pictures. That looks so incredibly unnatural that I want to scream.
Why can’t we just be normal? Please. I’d rather be complaining about my son being the resident biter at daycare than having to deal with all of this.
I did zero research on standing frames beforehand, and the physiatrist didn’t give us any options. Talking with my HIE group, I asked them to post pictures of their children in standers and there was one in particular, her son is about a year older than Noah and also lives in Canada. He too has level 5 spastic quad. His standing frame looks AMAZING compared to the one Noah has….the angle is adjustable, it has a table in the front so that he can play.
I have no idea if we’re now stuck with this stander for 2 years. All I know is that I’m made at myself for YET AGAIN going along with the medical professional without doing any of my own research. Really, it should have been a huge red flag when the company that fitted it had to add a steel bar and a pad at the back for his head and neck. That should have been a huge indicator that it wouldn’t be a good fit for him. But as per usual, I trusted those who are my societal superiors. He’s a DOCTOR, what the hell do I know?
I just coming back into the blame game. I blame myself for not speaking up more while I was in labor, not asking questions, I didn’t even Google the potential side effects of Cervadil. I completely walked into the situation with my eyes shut, and it screwed me over.
I let the guy talk me into spending an obscene amount of money so that Noah could have HBOT…..when there is no data supporting its use for children with cerebral palsy. He sounded like he knew what he was talking about, and I still feel like I was very much taken advantage of.
And now….I don’t even know if we’ll be able to get a different stander. The one we have was custom fitted for Noah. We didn’t have to pay anything for it only because we make under the income cap so we are applicable for the cost-share exemption program (which I am grateful for). AHS doesn’t have an employee directory but I wanted to email his PT and OT the pictures I posted above. Noah deserves better.
I have been waiting since July 15th for a psych referral. I. NEED. HELP. I put it off long enough in the first place, and here it’s been almost 4 months and I still haven’t heard a word? And TMI alert, I want to get an IUD so I need an OBGYN referral. I made the request for it that same day and still nothing either. I could have easily conceived a baby in that amount of time, come on! This is unacceptable. There are drop-ins available for mental health professionals but seriously, I can already tell that I’m going to need long term care. I believe that I’ve been depressed since my teenage years but refused to recognize it. Now I know. And I want to get a handle on it. Please help me help myself!
Overall I am grateful to live in a country with universal health care, but sometimes it is a real bitch. I’m tired of waiting, psychiatrist! Call me, please!!
Thanks for reading. I’m sorry that my blog tends to be a ball of negativity.
In other news, THIS happened the other day. He sat unassisted for over 2 minutes with very little wavering back and forth. Hopefully you will understand how big of a deal that is. 🙂
Unassisted sitting, 22 months. ❤