Not a single part of this journey has been easy. I don't know that I ever expected it to be easy, but I never expected my son to get a brain injury either.
Every time I look at him all I can think is 'wow' - he is such a fighter. I struggle with being depressed and sad and mad and every other emotion that exists. But, how bad can I really have it compared to him? I got to be a 7 year old. I got to go to school normally. He is a kid... a child. The rest of his life will forever be changed. As is mine.... but I at least lived. I got to grow up.
I did flashcards with Todd this morning. He did amazing. I often find myself observing his therapies and find myself actively trying to not let myself get too excited or too optimistic. But there is no denying this. I've been told to prepare for setbacks... we haven't had one yet (knock on wood). I'm just terrified. He woke up the day after he arrested and was following commands... Of course that was before the injury set in... as I know now... but I was so happy then... so happy that I took a brain injury off the table. I don't know if I'm strong enough to handle a setback yet.
I try to force normalcy on myself. I am going to the gym. Going to work. Engaging in forced conversations. If you have to work so hard to feel/be normal... is it actually normal? I feel like I can't relate to people anymore. Everything going on with Todd is the center and entity of my world. There isn't anything else going on. I feel like a broken record when people talk to me and the only thing I have to contribute to the conversation is how I had to argue with insurance companies all day. Once or twice is no big deal... but it's becoming every day.
I was in therapy before all of this just to deal with past issues and how to not allow them to affect my future. I was doing pretty good and we were able to change my view of things and perception of them. That changed everything. I had ground breaking appointments that I walked out a new person. 10x happier than I'd ever been. I'm scared to go back. I don't expect anyone to understand what I'm going through if they haven't been through it themselves... so the idea of a psychologist telling me what to do and how to deal infuriates me... just like it does when anyone else does. There is no manual for life. There are no directions on how to deal with this and live and be happy. I need to be happy again. I need to be happy not only for myself... but for Todd too.
Todd smiles. He laughs. He plays (modified version of course). He keeps me going. Seeing his smile every morning pushes me through the day. His laughter motivates me. There are other parents whose children have similar injuries that haven't smiled... haven't shown emotion.... I don't know what I'd do. The only thing getting me through this is knowing that Todd can experience happiness.
He progresses more each day. More laughing. More smiling. More noises. Flashcards. More movements. More mouth/chewing movements. None of this is as fast as I would like, but it's there... and I need to remind myself of it every time I get down and depressed. Easier said than done of course.
I've made a promise to myself that I will try to find at least one positive in everyday... and we can work up from that :)
This used to be the beginning to my favorite time of year... Back to school, Fall, football season, the weather. I love everything about this time of year. At least I used to.
Brian mentioned to me the other day how excited he was that it was August or something like that.. I didn't understand why since I'm the one with the weird season fixations. Apparently he's looking forward to how I'll make the house smell since I'm obsessed with fall scents and usually go buy in bulk in August. I pull out all the Fall decorations... colorful leaves, wreathes, even new place mats.
I don't know if I can do that this year.
I'm not excited. There is no back to school. We were supposed to be posting the obligatory back to school pictures just like everyone else. Today, the day everyone else went back to school, marks 5 months since Todd cardiac arrested. We also had to drive to Jacksonville and back for Botox injections. The rehab specialist mentioned a Baclofen pump to us again as well. They are technically not indicated until you're at least a full year out from injury so I put it out of my mind from when they mentioned it when we were at the hospital. Todd already has an AICD in him... in his belly. I don't know that there is room for much else. Not to mention I don't really like the idea of a pump going directly into his spine.
It breaks my heart that Todd didn't start school today. He loved school. As of now he will only get an hour and a half a WEEK of teaching split into two 45 minute sessions. That could change Thursday though at our first IEP (Individualized Education Plan) meeting. That in itself is going to be a battle.
It's the last few months before the wedding and I've gained weight since all this happened. My dress doesn't fit the way it used to. It doesn't look the way it used to. Maybe it's because I've changed from all of this and see things differently. I don't know.
This season is also turning into a countdown. A countdown to next semester. Next semester when Brian goes back into clinics and has crazy hours with schedules that we won't know until the first day on the rotation. I'm losing my mind trying to figure out how this is going to work. How I'll be able to work.
And what to I do about Halloween? Sure I can still dress him up and wheel him around... but Trick or Treat? That sounds like torture... Here let's roll you around and collect candy that you can't eat. Not that he ate much any other year (we still have Halloween candy from last year on top of our fridge) but it's the idea. Then there's Christmas... he can't help decorate or pick out a tree. We can't cuddle, drink hot chocolate and watch Christmas movies. He can't even open his presents.
When I open my calendar and look at the next several months... all I see are doctor appointments and therapy.
This only touches the surface of everything going on inside my head. There are so many other conflicting issues and ideas swarming through my head. How do you make peace with a situation when there is so much turmoil?
Even before all of this I questioned if I was a good mother. I worked my ass of getting through 4 years of school, nursing school included, for him... for us. I wanted to make sure I could support him, but in the end I wound up taking a lot of time from him. Was it the right decision? Now all I can think about are all the times I did things without him. Every time I hired a babysitter. Every time I took a trip without him. All the hours of studying that could have been spent playing with him. You always think there will be time later. I couldn't wait till Brian finished school. We'd have two incomes and plenty of money to take multiple trips to Disney and go on actual vacations as a family. We've also pretty much decided we aren't having another child. Granted there is still plenty of time for that to change, but it's the idea we're going with for now. Todd wanted a little sister so bad... he was begging for one all the time.
I will, however, end this on a brighter note.
There was a patient at work that got very sick and almost died. We were able to bring them back and several days later when I went to go check on them their family told them who I was and even though he/she didn't remember me and was still very weak he/she reached up to shake my hand and hold it. That doesn't happen too often... at least not to me. All I could think was I couldn't be there for Todd... at least I was able to do something for this person. Apparently someone had told the family about my situation and Todd and I think they were more upset that I had to go through this with their family member than I was. I've been thanked a million times by patients and their families... but never one quite like this... not this situation. I felt almost happy.
I went back to work last week After 4 1/2 months of being off... it was definitely an adjustment. My first day could have gone a lot better. I forgot my breakfast, the coffee shop changed it's hours so they weren't open yet, I turned the wrong way, I was floated to another unit, and I forgot my passwords to chart and pull drugs. By 7:30 I thought I was doomed. It turned out to be a pretty decent day though.
Getting back onto my actual unit was where the challenging part was. Not to be overly dramatic, but that's where I was when I got 'the call.' I get flashbacks of that day. When I walked to my car after my first day all I could think was that the last time I actually walked here... Todd was perfect and healthy. I'd like to hope that it gets easier... hoping that it's sooner rather than later. I try to walk out with people now so that I'm not alone with just my thoughts.
I don't mind people asking about me, how I'm doing and how Todd's doing. It's definitely nice to have adult interaction and actual conversations. But when the conversation isn't focused on me and the only thing I have to add has to do with bringing Todd up, I feel awkward. I literally have nothing else to talk about. I don't want to sound like a broken record and I don't want to be all depressing. Overall good first week back to work. I have amazing coworkers :)
The next topic of conversation becomes the wedding... it's the only other thing going on in my life. Even that gives me so much anxiety though. I feel like I get criticized for continuing to plan it and go through with it. I'm terrified of upsetting people. I'm terrified of fighting with people. I feel guilty that I take time away from Todd to do wedding things like go with my mom to buy her dress or go get a slip for my dress... but this is the one and only thing I have to look forward to right now. I don't see why I should have to give that up. Yes, some things will have to be modified, but it doesn't mean it can't still happen. He's not acutely sick anymore. He's stable. He will be there and he will participate. Not to mention... a lot can happen in 4 months.
I want to feel happiness again. I want to get excited again. Perhaps I'm overly sensitive, but I feel like every time I find a light during all this darkness someone finds a way to dampen it. I also feel that I have a right to be sensitive. Not forever, but it hasn't even been 5 months... we haven't even been living at home for 2. I deserve time to adjust and process all of this.
Hoping this emotional roller coaster will someday become much less jerky.
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