Finding the Positives

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 :)

Inner Turmoil

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. 

Anxiety

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. 

Revival

I've struggled since my last post... I can't lie. I can't deny it. Aside from getting up to care for Todd... I didn't get out of bed until 3 o'clock. I got up a couple of times... tried to stay up... couldn't do it. I'm sad. I hurt. I'm grieving. I'm tired. Brian desperately tried to pull me out of bed. Suggestion after suggestion. He finally got me out on the fact that Todd needed more fish oil for tonight. I had to go to the Vitamin Shoppe to get it.

On my way out of the community I checked the mail. Another donation... but this time with specific instructions to pamper myself... do something for me. Brian and I have both attempted to do things for ourselves and make time for ourselves... but it's hard. We both feel so guilty. Guilty leaving the other one alone with Todd. It's hard work. It's physically challenging to lift him, carry him, change his diaper etc. It's mentally challenging when he cries incessantly and we can't figure out what's wrong... no matter what we do. We feel terrible and selfish taking time for ourselves. Our energy should be spent helping him get better not selfishly on ourselves... or so we think.

I cry when I'm with Todd... I cry when I'm without him. I miss him in both instances. I hurt for him. You hurt when your child hurts. He has pain. Contractures and spasms are not painless. I can only imagine. Stretching and placing weight on certain spots helps with the spasticity pain... but it causes pain to do so. I have to hurt him to help him. This. Freaking. Sucks. I now know the true definition of tough love. This is the hardest thing I've ever had to do.

I went to get my nails done... which happens to be a place in the mall. I don't have someone I normally go to - just a certain place. As I was waiting to 'sign in' another woman was paying... she was $4 dollars short. She brought her son with her to the salon... Chick-Fil-A in hand. She obviously spent the other bit of money to buy him that meal. I understand the attempt to pamper/take care of yourself when you don't have the money for it. I never have cash... ever. But, I remember that this particular time that I did in fact have cash in my wallet. I paid the remaining amount. I felt good about it... emotional. The whole salon was made aware that this woman wasn't able to pay... so when she suddenly had the funds of course it was made known what I had done... embarrassing. I tried not to cry. After the generosity that has been shown to me it's the least I could do. We don't know everyone's story. We don't know what they are going through or what they have been through. I know it was only $4 dollars, but they weren't going to let her leave and I'm sure she was utterly embarrassed. After that I sat down to get my nails done. I am not a very talkative person with people I don't know. I usually just sit and suffer in silence... (I also suck at understanding accents) The woman I had today was amazing. We laughed. We talked. We share stories. A very different experience for me. I enjoyed the company.

After that I decided to walk around a bit... I haven't been to the mall in months. I didn't need anything in particular, but I was already there... I might as well look around and feel human again. I wound up finding something I needed for the wedding as well as a watch for work since I start back on Sunday. I'd say that's a successful trip. Then I saw it. The indoor mall playground. Todd loved this place. He would stay there for hours if I let him. I cried. Right there. In the middle of the mall. Staring at other people's children. I'm sure they thought I was a creep. I miss having to drag him passed the place and saying 'next time'. I pulled myself together and kept going. On my way out I ran into a colleague from work. She complimented me and was very supportive of my going back to work and how I've cared for Todd. It was much needed. To hear it from someone other than immediate family.

As I walked away from the conversation another friend invited me to dinner. It was more of a demand rather than a question... but with the day I was having it needed to be that way. Brian had to work overnight tonight and I decided to not be a baby and to tough it out and take Todd out with me. As tedious and difficult as it is to transport him... it was really nice. To have conversations about things other than him.... about things that are funny. It was nice to be able to talk about myself for once and not just in a way in relation to Todd. I'm struggling to remember who I was before this. I'm not the same person I was... but I am still my own person, right? I've struggled to find her... this person, buried beneath Mommie, caregiver, advocate, and nurse. I felt more myself during this dinner than I have in so long.

I also had a somewhat distant family member... not one I talk to often, but I do keep up with on Facebook, contact me to offer to help in any way she could with Todd. Even if that meant flying out here for a bit. I'm still amazed at the generosity of people around me.

I feel like my faith in the future has been revived. I feel like for the past few days/weeks I've felt like I was stuck in a rut. I'm terrified of going back to work, but I think it will help the situation. It will help me reidentifiy with myself. I'll be doing something I love... something I went to school for. A series of problems to solve... that are actually solvable. Task oriented.

There is hope for the future... and I need to stop forgetting that.

Non Pity Party Post

I set up this blog so that I could vent/release my feelings out into the world and people could 'choose' to read or not... I think I may have turned this page into a pity party for myself. This was not my intention, but I do find myself more willing to write when I'm sad and depressed rather than when I'm happy and energetic. 

As of lately I just feel drained. I wake up tired. I go to sleep tired. I try to push myself to do things for myself, but I'm just exhausted. I'm exhausted, but then I find myself lying in bed, restless and awake. 

I have frequently visited the thought of 'what if he didn't make it' or 'would it have been better than having a brain injury' .... the conclusion I have come to is that being able to cuddle with him and build a fort over him and watch him laugh as my shoddy fort comes falling down on top of us is much better than visiting a grave... any day. He still brings so much happiness into my life. He laughs so easily. He smiles at me. He shows me that he loves me. No amount of pain in the world can trump the feeling I get when he smiles at me. 

Last night, as I mentioned earlier, I built a fort. Just like blankets and chairs, but none the less a fort. I was underneath it with him while we watched a movie (Tangled, I think)... I started telling him 'I love you' ... he started trying to mimic my mouth motions and blew air out at somewhat appropriate times. You could tell he was trying. 

Yesterday morning, we had physical therapy. They placed him on a ball, shaped like a peanut, and had him facing it, leaned over it, on his knees. Hopefully I gave a good description of the position he was in. I had Frozen songs playing to try to provoke him to hold his head up. Although at times I thought it was spasms as his therapist kept telling him to push/rock etc it seemed to become more consistent. She would tell him to then he would. I try not to let myself read too much into these things because I don't want to be disappointed... Todd was following commands the day after his arrest... then a few days later he wasn't. I don't want to get my heart broken again. But this is encouraging. He also initiates some pedaling on the bike. 

Things he does seem to be more purposeful. At the same time... I know he is aware. Just because the therapists and doctors can't measure it doesn't mean that I don't believe it. I know when he recognizes something I say, or a joke from before, or an event from before... but, is this utter torture for him? To know who he was, what he could do... and to know how limited he is?

I got to take him swimming. He loved that! We will continue to do this and hopefully he starts relaxing more with it. I miss this kid telling me jokes and annoying me at 7 o'clock on a Saturday morning... what I wouldn't give for those days again... but in the mean time... I love how much of him I have now :)

Hope for the Future

I've had a lot of different things inspiring this post.

Of course, my ultimate hope is to have the same Todd back.... this just simply is not going to happen. I have researched and researched and have not found a single success story in which I would be happy with the outcome. 

There are kids that get physical mobility back... there are kids that get thought process and learning back... but no kid gets everything... how do you decide what you think would be best? I feel like mentally, Todd is completely there. The looks he gives us, the expressions... they are all appropriate for the situation. So do I wish he was physically better? Yes... of course. I want him to chase me around again. But, then I hear of these kids that are so mentally altered that they are committing violent crimes against not only their families but themselves too.... do I really want Todd to struggle with this? 

What do I want for Todd? I want him to love. I want him to live. I want him to enjoy himself. I want him to succeed. I was never able to picture Todd as a teenager or an adult... maybe because he was no where near either of those things... but, it makes me wonder. I wanted to give him a future, a life. I worked my ass off through nursing school not just for myself, but mainly for him. I knew that I would always have a job, regardless of whether it was one I wanted or not.... but I could provide for him no matter what. My ultimate goal was to take care of him... and now I feel like a failure. 

How do I stop feeling this way?

Right now... I feel like more of a caregiver than a Mom, a roommate rather than a fiance... I've lost my own personality, my own being. I feel like all I do is support everyone else. I'm not working, so my nursing degree is just sitting there staring at me... Who am I? How do I quit feeling like I fail at everything I touch? 

Todd deserved so much more... he didn't deserve to go through this. 

I don't give up hope because to do that would kill me.... and Todd deserves every chance this world has to offer him. I will fight to find any solution there is to this devastating injury. 

Faith

I recently read a blog written by another Mom with a child going through something similar to Todd. She spoke about how her faith was questioned and challenged. Luckily for her, it seems her faith only grew stronger with what was going on with her child... my experience was somewhat different. 

I started moving away from religion around the time my parents were going through a divorce. A time when we needed our church the most. We were practically shunned. The looks we got. The gossip. It seemed to be just another group of people who were only there for the good times...not the bad. I didn't want to be a part of that. I attempted to attend several other churches, but nothing ever felt comfortable. Even after Todd was born, I attempted to take him to church. The looks and judgement I got for being a young mom... maybe I should have been stronger... but I didn't feel welcome or accepted. I did however allow him to go with his great grandmother to her church every Sunday while I worked. It was important to me that Todd have exposure and hopefully develop a faith of his own.

Throughout multiple experiences I would question how God, this good God, that I was taught about would allow these things to happen. So much pain and suffering. So much unhappiness in the world. This led me to my belief in the universe. A system of balance. I always believed there was something more than just us... but I was struggling to believe the God that I had been taught about. Plus, I struggled with the multiple religions. How could only one group of people know the truth or be right? I believed in the universe. I believed in balance... in cause and effect. 

When this happened... when I was sitting in that emergency room. I prayed for Todd to be saved. I felt guilty. How dare I pray selfishly after not praying or anything prior to this for years. I didn't realize what I was praying for then. I didn't realize that by saving him that he would be introduced into a different life when he came back. Did I really pray for him to be saved just to suffer? Was I being punished for selfishly praying? He doesn't deserve to live like this. He deserves so much more. How is it okay to allow this to happen to a child? Someone so innocent. 

Recently I've struggled adjusting. I feel like I do well during the day time, when we're out and about... but in those late hours and early morning hours... I cry. I miss him terribly. I've started to pray again... again feeling selfish. During one of these prayers I asked for a sign... as I'm sure many people have done before me. I needed to know. I hoped it would be in a way of progression with Todd... it came much differently.

I know this is going to sound crazy, but bear with me. 

One of our neighbors', one of Todd's friends, cat got loose last night. Her mom hadn't told her yet as she was desperately hoping that the cat would turn up before she had to tell her. I was leaving our complex for an appointment and had literally just gotten done thinking, 'How awesome would it be if I could fine this cat for her?' I know the pain of having your childhood animal run away. And I was struggling with feeling incompetent and unable to really do anything right (I always took pride in how well Todd was turning out - so smart, so polite, so fun and loving... but then I even failed at that... I didn't protect him).... It was no more than a second that the thought passed through my mind that I saw this cat. It allowed me to pick it up and take it home. No problems. This was my sign. I know it sounds insane, but it was my sign. My faith may not be what it was... but I still have a little bit left. I can build on that.