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. 

Theory

I used to have this theory. Everyone goes through the same amount of crap in life... it's just a matter of when and how spaced out it is. 

I've completely abandoned this thought process.

I think I came up with this so called theory to help myself get through previous trials in my life. I went through a lot of tough situations starting in my preteen years. These situations were awful enough that I had to develop coping mechanisms. How does an 11-12 year old cope with situations that they can't even fully understand? Things that even to this day are difficult to understand. To protect myself from being bitter, angry, resentful... I had to come up with something that showed me a light at the end of the tunnel. Although I still struggle with a lot of these feelings and emotions... it got better when I thought, and forced myself to believe, that the worst was behind me. How could anything be worse than what I already went through? The only thing I could come up with is if the same situation occurred with a bit of a different ending. So, even if this did happen again... I would be prepared. I would already know how to handle it, how to handle myself in the situation.

I never imagined that this would happen.

I never would have guessed that this would have happened to my child. Those types of thoughts just don't cross your mind. You see your child growing up, going to school, learning new things, developing their own personalities...their own lives. 

I thought, there has to be a balance, a reason for all the madness. There is no reason. There is no answer.... and some people just get dealt sucky situation after sucky situation. I convinced myself that, yeah... bad things would happen again, but nothing quite so tragic. I was wrong. Very wrong. I'm still in disbelief. I clung to this theory. I lived by it. The worst was behind me... no, it wasn't. 

At this point, it has all been about my situations. What I've gone through. But, there is another person in the mix. Brian. Another person who went through horrible, horrible times. Awful experiences... tragedies. He fell in love with Todd. He adores him. It's not fair that he should have to experience even more pain than he already has. Before all of this with Todd, I presented my theory to him hoping to help him. Now, I just feel like an idiot. How wrong could I have been? 

Brian is absolutely amazing to Todd. I could not have found a better person to spend my life with and involve in Todd's life. I wouldn't change the experiences Todd has from Brian for anything. But, there is an extremely high level of guilt from me introducing Brian to Todd. Had I never pursued the relationship. Had we never pushed to be together. Had I never introduced him to my child... he wouldn't be feeling this pain. This was not something that he had to be a part of. I got pregnant, I had a baby, I have to live with those decisions and everything that comes of it. He didn't. He didn't have to go through this with me. I feel responsible for the pain he feels from this. It's my fault for introducing them. Granted, yes, he had a choice. He didn't have to play the role he did. He didn't have to do all the things he did. But, that's part of what makes him such a great person. He doesn't deserve to go through this. 

I don't know how to see the light at the end of the tunnel anymore. I'm taking everything hour by hour. I can't possibly look any further ahead. It's exhausting. It's scary. There is so much unknown... it's overwhelming. 

I went to Publix yesterday and cried in the dairy section by the yogurt. Todd used to pick out his 10 Publix yogurts every trip. When does it get better? When does it get easier? Will we ever be able to be happy again?

Back Together

We are finally ALL back together! ... the fur babies are home!!

As if we weren't busy enough, let's throw our 2 dogs back into the mix.... but seriously, we missed them.

I was super nervous to bring them back home. Hooper, the lab sized one, is a big giant clutz and thinks he's the size of Brody, the shih tzu, who is also always underfoot. As annoying and crazy as these dogs can be, we love them, and our family wouldn't be complete without them. Our house doesn't feel quite so dead anymore. They definitely bring life back into it. Makes it easier to be here after everything that has happened.

Not to mention they ADORE Todd. Brody is constantly being caught laying right next to Todd, whether he is in the floor, on the couch, or in bed. Hooper is constantly giving Todd kisses... every time he walks by him. He's Todd's watch dog. Always observing what's going on with him. He'll walk over if Todd starts to cry. As clumsy and crazy as these dogs are they are still aware. They know something has changed with Todd. They know to be gentle around him.

They are certainly happy to be home as well. We pulled into the neighborhood and both dogs almost lost it waiting to get out. Normally Brody would run off and chase something or Hooper would just go exploring... they both bolted for the front door. They knew which one was theirs. They were home.

We also made a big trip down to South Florida this past week. Another nerve wracking experience. I was already nervous having Todd in the car for 5 minutes... but, 5 hours?! He did well. Better than I expected. I feel like if we continue making trips we just need to get rid of the apartment and live in an RV haha. We literally brought our entire house with us... excluding the walls and plumbing ;) We got a lot of wedding stuff done, so hopefully only one more trip down and everything will be done. According to my countdown (but who's counting?) we have 5 months and 17 days! Holy cow. I feel like it's been over a year away the whole time and now only 5 months! I would say 'where has the time gone?' but I already know the answer to that question.

Now it's time to REALLY get settled back into life and the world. We'll be interviewing private duty nurses soon, I'll be going back to work, Brian will start his last year of vet school in a month. I've started going back to the gym (unfortunately you either gain weight or lose it with stress... I gained... and a certain important dress is just a wee bit on the tight side :O)

I guess this wound up being more of an update post... I'll pour out the emotional junk next time ;)

Don't Stop Believing

One of my all time favorite songs!

We all know what the song says and what it's about, but for me, just the title is worth screaming. It came on in the car on our drive home from rehab. I was screaming the lyrics at the top of my lungs... ignoring all the looks I was getting from other drivers. I feel like it was a sign.

The last few days at rehab were happy ones for me... I knew we were going home. But, until the point that they told me our discharge date... I was depressed. I felt defeated. I was exhausted. I didn't feel like we were getting what we should have out of it. I was an hour and a half from home. Brian couldn't stay because of externships. It was depressing and sad. We left rehab due to lack of progress. Plain and simple. Most parents would have probably fought them on this decision, but regardless of what their notes say... I knew Todd was progressing, but I also knew he would progress more at home... and he has. Still, the 'lack of progress' phrase resonates in your head. Long drive = time to think. This is not necessarily a good thing. Would my child ever progress? Would he ever come out of this 'minimally conscious state'? (which I never believed was an accurate description for him - he's freaking alert) Would he ever talk to me again? Eat again? Thinking of all of this can be depressing. It takes it's toll on you. I needed this pick me up. This sign. Don't stop believing... I haven't yet.

This kid amazes me everyday. He's doing so much better than everyone said he would. He's doing so much better than we ever imagined he could. & I intend on fighting to progress that until I can't anymore.

He got to get on a customized bike for disabled children this morning. HE initiated some of the pedaling, which is absolutely amazing. I never expected him to do it so soon. He also tries to push himself with his legs when we put him on the swing. The fact that he isn't even 4 months out from injury and doing all of this is absolutely amazing!

So... for my child that refuses to let me stop believing... here are some pretty awesome pictures and videos... a proud parent has to show off every once in awhile!

First video is his reaction to a sweet note from his 1st Grade teacher. The second video is him using an eye gaze computer to control the screen using just his eyes.