The last couple months of recovery have had their mental health ups and downs which has been hard to navigate on their own nevermind being a mom to a sassy busy toddler. Appointments have slowed down up until June 20th, when I had my 2 year Neuropsychological evaluation and then yesterdays first Vision Therapy appointment! Those both have been super informative. So I'll start with the Neuropsych eval:
I got the results on the 27th and the good news is that I have improved in a few areas. The visual processing I improved by a lot! My spatial awareness, my attention and my multitasking are all still impaired. Also my impulse control is super bad, but we knew that. My ability to learn by doing something myself instead of just being shown things and then doing them didn't improve at all actually. Which makes sense why I have to have things shown to me several times before I can do them myself. My inhibition, behaviour and my ability to "read a room" & read other people's emotions are impaired as well. However my mental stamina is gradually improving but will get there with time. (I still have to take a nap a day to make sure I'm not a basket case in the afternoon)
I think for the most part all of that sat okay with me, however when he proceeded to tell me that I wasn't able to return to work, ever was kind of a gut punch. Yes you all might think "why is she complaining". Well it's one thing to be working and want some time off, but it's a completely different story when you've had the option taken away from you, especially when you liked what you were doing.
I've also really been struggling with the emotional behavioural side of things. I'm really trying hard to figure out what my triggers are, but right now Ava's at such an absorbent age and she watches and copies everything I do, and I'm terrified that she's going to learn my behavioural issues and my no filter stuff, and that she's going to just be mean. I'm so scared.
Vision therapy went okay yesterday! I'm super optimistic about it, although yesterday I was tired, it was a huge day, and my brain hurt from talking to my vision therapist. This was the first time ever meeting him so the brain injured, word searching, zoning out mid conversation, sparratic thoughts, no filter Emma came out. it's so hard for me to talk to people that aren't the "usuals" it takes so much brain power. My eyes were sore after therapy too but I kind of expected that. It's like going to the gym, but for your eyeballs. Anyway, my left eye was really giving me grief lastnight that at one point, it was over working and then that lead to mental burn out.. and when Ava didn't go down for bed easy, I kinda just broke. I don't think I've ever actually cried over the whole accident and what it's done to my life. I try to not go down that way of thinking, but lastnight I cried so hard my left eye hurt and then felt like I had a rock under my eyelid..So it hurt to cry, so then I cried harder because I started thinking about all the things this accident has taken away from me... I started making a list in my head so I'm going to share a few with you guys;
•My independence (still have to ask for rides)
•my filter
•my normal brain
•my brain capacity
•my ability to carry my child without being in constant pain
•the old Emma
• my ability to socialize like a normal person
•the way I think
•the way I talk
•my inhibition
•my job
•my empathy & compassion
• the ability to live a normal life without having limitations and having to be aware of overstimulation & boundaries
• I can't even cry like a normal human. It hurts because of this left eye problem.
That's just some to name a few. Then I tried to make it more positive so here's a list of things it has given me;
•my priorities have changed for the better
•my outlook on life is different
•it's given me the ability to be a stay at home mom & have a closer bond with Ava.
•it's shown me how strong I am
•it's brought me and my husband closer, its brought our families closer aswell.
•learning new things about myself every day
This list isn't as long, but as we keep going I'll be able to add more to the list. I talked to my VT as well and he's given me some things to try and lesson the delayed effects which were really helpful. I just find it really hard to try and talk to people about this stuff because they just don't understand. And you won't until you actually experience it yourself, which god forbid you do. Everyones convinced that it's going to get better one day and it can't be as bad as I'm making it out to be because I look fine. Yes my neuropsychologist told me that just because the 2 year mark is coming up doesn't mean I just magically cap out at healing. But it's just going to slow down and I won't notice the progress as fast as I did before, and that I'm just going to learn to function better as this new me. I know that's going to be true, and it's a positive way to look at it & I should be grateful for being "high functioning" I just still can't help but grieve the things I've lost... I know that will get easier to cope with in time too, but it's just really unfair somedays. Ava and Josh don't deserve to be lashed out on because "moms tired" or "moms overstimulated and didn't get her nap in today"
I've got some changes to make, I'm not quite sure how to start these behavioural changes. My therapist told me today that once I relearn how to be nicer and more compassionate to myself, that I can start to give compassion and empathy to others. So maybe that's where I start? Im feeling just so lost between wanting to enjoy summer, my life and my "new me" boundaries . I need to find a good healthy balance.
Anyway we're coming up on 2 years of this journey and it feels like it just happened this year. It's kind of crazy to think. I feel like I've just been living in a fantasy land where I'm going to wake up from a coma in the hospital and everything would be different. But I'm not sure if it's good or bad different. If I could go back in time and change any part of my recovery process, I don't think I would. It's been onward and upward from day 1. Yes these last 2 years have been so so friggin hard. There's been so many ups and downs, more ups then downs, but I've learnt so much about myself, and our daughter is so beyond happy, and loving, she even kisses boo boos when Josh and I get hurt, I absolutely love being her mom. She makes all the low times worth it. I just really hope that my journey on this planet doesn't jade her and ruin her journey.
Hey Emma,
Thanks so much for being vulnerable and sharing your story. As a person who’s been there, recovered and went through another brain decompensation episode while my child was just a baby, I want to tell you that there is hope and that you have this! Although it might not seem like it, you are making progress and getting better each day. You’re fighting and adjusting your strategies as you go, and that in itself is exceptional. Although it’s hard right now, I promise you that it does get better with time, each and every day.
One day when your daughter is old enough to understand, you will be her hero for working through all of this. ❤️