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. 

Bittersweet

We finally have a discharge date! Given that everything is set up and ready to go we will be going home Monday!!! I'm so excited to finally be back home and sleep in my own bed. But, the reasons we're leaving are not quite as 'joyous'.

Todd was admitted under a certain program essentially to monitor his responses to the environment. If he progressed during the initial 2 weeks he would be able to stay longer. Unfortunately (& I say this with mixed emotion) he did not progress. 

Yes, of course I want my child to get better. Perform better. Show everyone what he's capable of. But, that's just not happening here. He shuts down in therapy. Pretends to sleep through it. The second we leave the room he wakes back up. It's frustrating. He does a lot more than what they can document because he simply won't do it for them. He responds much better to me, to Brian, to his family. Not to mention, once we get home we'll have a better medication schedule. I've fought a hard fight to even get the medications where they are now, but it's still not perfect. Once I can manage his medications and make sure he gets them exactly when appropriate I think he'll do much better. Plus, I think just being at home, in his own environment will help. He's just not benefiting from being here, even though a lot of kids do, I think right now is just not the right time for him. At least not until we get rid of a lot more medications. 

I absolutely love all of our therapists. They have all been amazing and wonderful and I've learned so much from them. Although I don't look fondly on this experience, I definitely will remember them and what I learned. 

We will continue therapy on an outpatient basis and I will also work with him at home. Although I am not looking forward to getting up in the middle of the night to administer medications, it is worth it. I'll hopefully being going back to work in the next few weeks. This is when we start reshaping our lives, our routines, defining our new normals. It's not going to be easy, but I know we are all ready to be back together as a family in our own home.

It will be much easier, however, to take care of myself from home. When we were in the ICU, Todd was so closely monitored that I could leave him unattended at times to run home, take a shower, pay a bill, meet a friend for lunch. But, there is no monitoring here. They aren't on any vital monitoring except the 3 times a day they check it. If I were to leave him it would be like leaving him home alone to run to the store. That's just not acceptable. I have all my own stuff at home. My towels. My body care. My clothes. I've lived out of a suitcase for almost 3 months now. I'll be able to go back to the gym. I definitely need that. To be able to carry this 50lb child. I'm going to need to be in better shape to protect my back and other muscles. 

Anyway... bittersweet circumstances. But, I think more sweet than bitter. 

Snoring

My child is the loudest sleeper... I take that back. The SECOND loudest sleeper. Only second to my father of course. If this is a genetic trait then I would like to take the time to thank you for passing this down our bloodline to Todd. Although it has hindered me from having a good nights sleep at times, it has helped me rest easy more times than not. Even when Todd was a baby I never had to do the whole 'get up make sure the baby is still breathing' routine... I could hear him from across the room.

I still can.

Tonight happens to be one of the nights that it's keeping me awake. Oh well, I'll be thankful for it again once we get home and Todd starts sleeping in his own room. And yes, I plan on making it back into my own bed at some point.

His snoring reminds me of so many memories. Memories from when he was a baby. Memories from him falling asleep in public places. Road trips. So many memories to choose from.

This kid could fall asleep anywhere. In my lap. In the car. Under a bench on the concrete. Half way under a rug. Sitting up in the high chair in the middle of chewing his food. Sometimes I wouldn't even notice. I would turn around for a few seconds and then all of a sudden I would hear the snoring. I remember when I was a kid, we would go on long car rides and my parents would always tell me to go to sleep because it would make it go by faster. I never really slept well in cars. This never really worked for me. But, Todd. Oh, Todd. Fifteen minutes into the drive he would say, 'I'm just going to go to sleep to make it go faster.' He was too funny. He was such a good child. Yes he threw his tantrums, but he was so polite and so easy going. When something didn't go his way he would say, 'I'll just get over it.' Where he got these phrases from I couldn't tell you.

We were looking into getting his tonsils removed prior to all the chaos we've been going through. Even the ENT doctors said they would probably want them out, but he's been going through so much that's pretty far down on the list of things we're worried about at the moment. Nurses would ask me how I could sleep with him being so loud. Honestly, as I said earlier, it's comforting. I don't have to get up and check that he's breathing. In the hospital he was attached to monitors so I could just look up at a screen and know. It's not like that here at rehab. It's not like that in the car. It won't be like that at home. Although the sound is comforting to me, it isn't so comforting to our nurses. Until they got to know Todd several were convinced he was struggling to breathe or in respiratory distress and I would have to wave them off and tell them to leave him alone.

I miss this kid so much.

Exhaustion

We finally made it to rehab. I don't know if my expectations had been built up or if I was simply being unrealistic or it could have just been that it's been an exhausting experience and journey to get here.

Maybe I just need to process and decompress.

Our ICU discharge day/rehab admission day wound up being a 19 hour day for me. Of course I was up much earlier than I needed to be... I was anxious. The long awaited exodus from the hospital. Not to mention... would it actually happen that day? We were sitting on 'Go' for over a week. I had momentarily forgotten how lucky we were that we had been at Shands so long that our nurses 'knew' Todd. It was utterly exhausting to argue with nurse after nurse about how to give him meds, setup his tube feeds, when to give meds etc... I'm still not sure how I contained myself. It didn't help that they do 3 shifts here. So we go through 3 nurses a day.... having the same conversation with each of them...

Oddly enough the nursing is what left more to be desired... the therapists are amazing. You would think I would be more defensive of nursing since it is my profession... maybe that just means I'm overly critical... or maybe it doesn't matter because this is my child we are talking about here.

This whole situation is such a giant roller coaster. I have really good days... and really bad days. Yesterday was a bad day. Simply for the fact that I'm exhausted. I don't have patience to begin with. The little I do have goes out the window when I'm tired.

I know typically, after a traumatic experience, patient's families need a lot of education. Not to say that I don't but, please evaluate what conversations I have had already and haven't. Drilling it into my head that my son has a brain injury and that it will be a long time before he recovers, if at all, is not necessary. I promise you I'm aware.

'What type of equipment and therapies were you using at home before hospitalization?' ... Do your F#$K!N& research! I had a perfectly healthy child before this. READ HIS CHART! It says on the first line of his health summary that he was a perfectly healthy child that went into cardiac arrest. So many people have ASSUMED he had deficits before this. No. No he didn't. He was one of the best students in his class. He was constantly outside running around with other kids. Playing sports. Had no social issues. Maybe too social if nothing else. He was absolutely PERFECT... this causes me to have to go and explain what happened, everything we did to try to prevent this... essentially causing me to relive everything. I'm never going to be able to cope and deal with this if you don't do your homework and at least read up on what happened. It amazes me the amount of health care professionals that will walk into a patient's room without reading their chart.

I am over the neuro storms. I hate the word. I hate the concept. I hate that they exist. I hate everything about  them. We finally got him on an amazing medication regimen that was perfect for therapy. He got his nap in between morning and afternoon sessions and he was alert and interactive during the right times. All of the times got messed up during the transfer and it has taken over 24 hours to reorganize everything. So yes, he is going to be more agitated. His meds aren't being spaced how they were. We were in the ICU for 72 days. Do you know how long it took us to find a good schedule? Yeah... don't go messing that up. Then, before we get everything back in order and you come in and see that he's agitated don't say to me, 'Oh! Is he still storming?' NO. HE HAS NOT BEEN STORMING FOR OVER A MONTH. Yes, he has been agitated. Wouldn't you be if this happened to you? Brain injury or not? So when his meds were given at an inadequate time and the nap he needed got interrupted to recast his feet which is painful and then you want to come in and do a cognitive assessment... of course he isn't going to cooperate as well.

I just want to take him home. I'm so excited about the therapies and everything, but as far as giving his medications, feeding him, activity... I just want to go home.

I miss him waking me up in the mornings on the weekends. I miss the snuggling. I miss him calling me Mommy. I miss the crazy things he used to say. I miss his happiness and energy.

Embracing the Situation

It is really hard to wrap my head around what we have gone through the last 9 weeks. 9 weeks. It has been 9 weeks since this happened. It feels like forever ago but, also like it was yesterday. Those feelings are still so raw. Every time a new child comes onto the unit and I see the family I relive that night. What I felt. What they are feeling. It's awful.

I have many moments of frustration. Anger. Throwing myself a pity party (that usually stays in my head). When ever I go down the pity party road I remember that this is so much worse for Todd than for me. Cue reality check. I've been brought back down to Earth and know that my role is to make the most of this and give him the best care, love, and life he deserves. 

I'm going to 'Embrace the Situation'. 

We have to make a new normal for ourselves. Todd, Me, Brian. Everything will change. Everything has changed. I've searched and searched for the silver lining. For something. They say you can find happiness in every situation. I've been looking. I think I've found it.

Right now, the source of my misery is being stuck in this hospital. They've done what they can do. It's time to move to the next step. Rehab. We've been waiting and waiting for this transition. I've heard such wonderful things about rehab in general and the one we are specifically going to. I am ready for this. I know Todd is ready for it. Poor thing is tired of laying on his back. He wants to sit up all the time and start moving, doing things again. This wouldn't be so bad if I didn't have to support his weight. I can only balance and support him for so long before I start hurting. I know Brian is ready for it. I know he hates being away from us. 

When Todd had the surgery to implant the AICD they had to crack part of his sternum. It was only the bottom part, but he has had to be on sternal precautions ever since. They recommend 6-8 weeks of precautions. Sternal precautions essentially means you have to be careful how you hold him, pull him, maneuver him so as to not pull apart that bone. This has made stretching and therapy somewhat more difficult. The main thing that it affects is his ability to lay on his stomach. He is tired of laying on his back and on his sides. I can tell when I'm holding him and we tilt and roll that he wants to just belly flop onto the bed and stay there. A few more weeks.... a few more weeks and he can. 

This is how I'm embracing the situation.

I am so excited for tummy time. Any of the moms out there know what I mean by this. This is how your child learns to roll over, hold their head up etc. All things Todd has to relearn again. I know this sounds absolutely ridiculous, but I'm ready to be home with him where I have our carpeted floor, blankets, large beds, a couch that I can situate him more comfortably and therapeutically. Tummy time is what I'm hanging onto. He's already holding his head up better and better everyday. But, I think laying on his stomach and being able to stretch out and even roll him around is going to help so much. If nothing else he'll enjoy the stretch and freedom. 

I've even picked out the blankets I want to use. 

It has been hard for me to accept that he has reverted back to an almost infant status in some respects. His only way to communicate is to cry. So I have to guess at what he wants/needs. Luckily he still understands what I say to him (at least I think he does) so I can at least make it seem like I'm not doing all of this just to torture him. But, I used to joke around with him, pick him up like a baby and rock him and say 'You're so big, you're not my baby anymore, what happened?' He would just laugh and laugh. Sometimes make baby noises back at me to play along. Well, I get to have Baby Todd back. Maybe not in the way I joked about wanting, but I do get the baby aspect back to a degree. I get to use all the stimulating baby toys, classical music, educational shows etc. I get to play those ridiculous games with him that teaches him to be aware of his body. The fun things. 

I have managed to get myself excited for this.

I know there are going to be set backs. Hard days. All nighters. Diaper changing. But, I had to find something to hang onto. 

Stages of Grief

So we all know the stages of grief. There is supposedly a so called order to them... I do not abide by this said order. I have fluctuated through them all, multiple times, back and forth, up and down, skipping some.... all in a days time... sometimes in only an hour. 

Denial. I think I skipped denial for the most part. If I went through denial at all I think it might have been when I was too shocked to feel/think anything. For the most part I've been pretty realistic about this whole situation. The second they told me they still didn't have him back when I showed up in the ED I knew. I knew the repercussions of that. I see this everyday at work. Perhaps the only denial I had was before they let me see him. Maybe I tried to convince myself they had someone else's kid behind that curtain. Once I saw him the denial was pretty much gone. After that it was all shock and having to remind myself that this was really happening, but I didn't struggle with that a whole lot.

Anger. This one I think I deal with daily. It didn't start till much later after the event, but it's one of my most common feelings. I have no one to be mad at. No one did this to him. I took him to the cardiologist. I had him checked out. Everyone did everything they were supposed to do. There isn't anyone to be mad at. But I am mad. I'm mad this happened to him. I'm mad that my 6 year old son has been put through hell and back. He does not deserve this. He was one of the most loving and caring people I have ever met. Even when I was having to discipline him he adored me and loved me unconditionally. He is so innocent. Why should something like this happen to him? There are plenty of terrible people in the world that this could have happened to, but no... it happened to him. It's not fair. I wanted so much for his life. He deserves a normal, happy life. Not one with constant struggles which is what this has turned into. 

Bargaining. This one started pretty quickly. I immediately started praying to (bargaining with) God in the ED. I can't remember the actual words I used but I remember doing it. I remember begging. I remember screaming. I remember crying. Anything... anything to save my little boy. Then came the other part of bargaining... the shoulda, coulda, wouldas... I have struggled with this one day in and day out. I should have known. I should have pushed. I took him to the cardiologist to prevent this. There were abnormalities in his tests, but nothing that set off red flags... I should have pushed for further testing. I should have known they did cardiac MRIs. I should have... I could have done more. I keep having to remind myself that hardly anyone knows they do cardiac MRIs... I can't beat myself up over not knowing they existed. I still should have pushed for further testing after the abnormalities. I also know, and it's hard to admit, but I continuously beg for more. I begged for him to live. Then to wake up. Then to still be Todd. Now, I'm begging that he eats and walks again. I just want more. Not for myself (maybe a little bit) but for him. HE deserves to get better. HE deserves to walk again. HE deserves to have fun and run around again.

Depression. I know this started during the neuro storms. There was nothing I could do. Nothing anyone could do. I was helpless. What kind of life was this for him? I begged for him to be saved, but for what? He's going to have a miserable life. I begged for his life and consequently caused him more suffering. What have I done? I went through a few days and I still go through spurts of not wanting to talk to anyone, withdrawing, not saying a whole lot. This can be very isolating. People try to find the words to say and all they do is make it worse. No one understands what you are going through. The only people that have a clue are the ones that have had children with brain injuries to this extent. It's not a very large group of people and none that I knew before this happened. I've been fortunate that others through support groups have reached out to me and told me their stories. Stories that were almost identical to Todd's. It's impossible to understand what I am going through if you have not been in my shoes. People try to compare their problems with their children etc.... it's different. It's not any better or any worse. Just different. When people try to relate or try to tell me to just be grateful that he's here it causes a downward spiral into a further depression. Not only have I beat myself up over everything else, but WOW now I feel guilty for not solely being grateful that he's still alive. Is it wrong of me to want more for him? Is it wrong that I want the best? 

Acceptance. I have accepted that he is going to need a lot of care. I've accepted that his life is going to be much harder than originally planned. I have accepted his conditions and their implications. That doesn't mean though that we are going to be stagnant. I've accepted the difficulties and plan on fighting for him well passed this. He's going to progress and I'm going to do everything I can to make that happen. Acceptance isn't giving up and just accepting that this state I see him in is permanent. This is the new norm. This is another hurdle life has thrown at us that we have to adapt to. I accept that. Yes, I still go through all the other stages sometimes, but I have accepted this new life we will have... and I've chosen to embrace it. 

(these were yesterday before the G tube surgery)

Mother's Day

I desperately wanted to ignore the fact that this weekend was Mother's Day. It didn't feel right, not having Todd able to talk to me, us still being in the hospital. I thought that if I didn't go out, I didn't do anything, and stayed holed up in the hospital that it could somehow bypass me. I was wrong.

I got emails, messages, texts, phone calls etc wishing me a Happy Mother's Day. At first I was a little bitter over it... I just didn't want to hear it, but after a while it felt better. I needed to hear it from other people since I couldn't hear it from Todd. For what ever reason I felt like there was nothing to celebrate... at least not me. I did tell my mother's (all 3 of them) Happy Mother's Day... I didn't ignore them, but I didn't want to have anything to do with it being about me. I guess part of me feels like a failure or that I did something wrong. 

I was reminded that this was not the case.

My soon-to-be Mother-in-Law said to me, 'if you haven't proved that you are a wonderful mother through this then I don't know what will'.... or something along those lines. It kind of hit me that even though I don't feel like I've been doing a whole lot of 'mothering' the last 2 months I am doing what a mother should. 

I guess this all comes back to guilt. Of course, Todd isn't being punished for something... he's 6. What 6 year old deserves this? Obviously, something/someone is punishing me. What did I do to have this inflicted upon my child? Was I not appreciative of him enough. Did I not pay enough attention to him? What did I do to cause this to happen to him? Was I that selfish? It's so hard to get these thoughts out of my head. I know they are wrong, I know this isn't punishment... it's life. Bad things happen. I guess I just want someone to blame... and there isn't anyone. 

Yesterday turned out to be a day that everyone explained to me just how great of a Mom I was and all the things that I have done during these last two hard months have been the epitome of a good mother. Mother's Day could not have come at a better time. I needed the reminder. I was sinking into a hole of depression and feeling bad for Todd, feeling bad for myself, feeling bad for dragging Brian into being a part of this family. The day greatly exceeded my expectations. 

Thank you to everyone that reached out to me. I greatly appreciate it :)

Guilt

Of course I feel guilty. Guilty for all the times I said no. All the times I lost my temper. All the times I raised my voice. I was by no means a perfect mother. Guilty for not spending enough time with him. Guilty we didn't go more places. Guilty we didn't go to his beloved McDonald's one more time. People tell me I did my best. What if my best wasn't enough? I had all these plans for us. For once Brian got out of school. Once I went back to school and graduated. Once we had more money.
         Todd has been begging for a sibling, specifically a sister, for a while now. I even feel guilty for not doing that... although that's not very realistic at the moment, nor has it ever been.
         There are so many shoulda, coulda, wouldas....
I wasn't supposed to be at work that day. I had switched shifts with someone so we could go to my Mom's the weekend before. What if I had been off. What if I had picked him up from school like he always asked. He wanted to be carpool pickup randomly so many times, but I also knew he would miss going to O2B. What if he had been with me?
          All the times he asked me to sleep with him. All the times he asked me to cuddle with him after work and I was so exhausted I just wanted to shower and go to bed. There are so many things I would have done differently. He doesn't deserve this. No child does. We tried to avoid this. We had him followed by cardiologists from the time he was born. Did we do enough? When they saw him in August there were some abnormalities, but nothing that shouted 'I have a cardiomyopathy.' We even did a holter monitor for 24 hours. Should have I pushed more to look into the abnormalities?
          Every time I manage to get out and make it into a store I get these feelings. You know the typical child, looking at all the candy right there by the register. All the toys and fun things. He always wanted something. I could have given him that bag of cheetos. I could have given him that Hershey bar.
          We were still learning how to ride a bicycle. He hadn't quite gotten the hang of the 2 wheeler. I should have gone out with him more. I want him to have the childhood he deserves... the life he deserves. This isn't it. This is so much less. I want to make him smile again. Make him laugh again.
          It's hard to not feel guilty when you are responsible for someone. He adored me. He wanted me all day every day. Now he has that, but not for the right reasons. I should have given him more of me sooner.

Mama Lion

I have an alter ego. Brian has named her 'Mama Lion.' She comes out whenever I am tired, frustrated, angry, irritable, determined, or overwhelmed with any other negative emotion. She has been around for awhile, but I think ever since we have been in the hospital she has been more of a constant in our lives.

I believe Brian chose the name based off the book ' Mama Llama.' But since Todd is a lion, lion head, lion heart.... that makes me Mama Lion. Not to mention I kind of act like a wild lion...

I am a very passionate, feeling, extroverted person. Once upon a time I was ashamed of it and often had people complaining about it, but I choose now to embrace it. This type of personality is what got me through life. I have a problem with thinking that my way is always better and getting irritated when people do things differently (even if they are just as efficient). Brian is a very smart person as well. He has learned to do things in different ways than I have. Naturally... we butt heads. Luckily, he is a very passive, go with the flow, roll with the punches type of person. Otherwise, we would either A) not be together or B) have killed each other by now. I do end up apologizing in the end... normally.

Now that we have been in the hospital, which, for the sake of keeping with the theme, is my natural habitat, I am a bit overbearing at times (most of the time). We do a lot of the hygiene, cleaning, daily care etc for Todd. When it comes to doing these things, since this is what I do for a living, I think I know best and I can be very critical. Unfortunately, Brian usually ends up being the one these critiques are aimed at. Fortunately for me, he attributes my fits of rage over not putting the diaper on correctly or laying down the linen perfectly to my Mama Lion personality. He brushes it off... How did I find such an awesome man?

Then there are the times where he gets lucky. My fits of rage get directed at the nurses or medical team, not him. Mama Lion comes out to play when I don't agree with something or when I'm sitting here watching my child's condition deteriorate. No, I do not work in pediatrics. No, my specialty is not cardiology. But, I know my child and I know ICU nursing. That's all I need. Yes, the regular Lauren will ask questions and make suggestions first. But when that fails... all bets are off. Mama Lion comes out and takes care of business.

Mama Lion has been quite productive with making sure Todd gets adequate care, but she's also caused me to have to apologize to a number of people. Most of which have been pretty understanding (thank god).

I have fought hard to give Todd the best life I can. I fought through the end of high school. I fought through college. I fought through nursing school. I fought through some pretty crappy beginning of career jobs.... & I'm going to keep fighting for him.

Oh, the Places You'll Go!

We've been reading to Todd since the beginning. Hearing is one of the few senses you retain even in the deepest of comas/sleeps. Our hope was that he would hang on to our voice, stay strong through it.

We brought several books from home, some we liked, some he liked. Many people bought us books as well. A favorite of mine is Dr. Seuss's 'Oh, the Places You'll Go.' I've loved this book since I was a child. You can tell by the way the book is falling apart. To be honest, I probably need to buy a new copy. I wanted to read this book to him probably more for myself than for him. It was a book I enjoyed, a book that made me feel better. I had no idea that this would happen.

"Wherever you fly, you'll be the best of the best. Wherever you go, you will top all the rest. Except when you don't. Because, sometimes, you won't. I'm sorry to say so but, sadly it's true that Bang-ups and Hang-ups can happen to you. You can get all hung up in a prickle-ly perch. And your gang will fly on. You'll be left in a Lurch. You'll come down from the Lurch with an unpleasant bump. And the chances are, then, that you'll be in a Slump. And when you're in a Slump, you're not in for much fun. Un-slumping yourself is not easily done."

I choked. Wow. How can this book relate to this situation so well? I wasn't sure if I could keep reading. I wasn't sure that I wanted to. This was a Bang-up. He is in a Lurch. Un-slumping himself is what he's been trying to do. I kept going...

"The Waiting Place... for people just waiting. Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go or the phone to ring, or the snow to snow or waiting around for a Yes or a No or waiting for their hair to grow. Everyone is just waiting. Waiting for the fish to bite or waiting for wind to fly a kite or waiting around for Friday night or waiting, perhaps, for their Uncle Jake or a pot to boil, or a Better Break or a string of pearls, or a pair of pants or a wig with curls, or Another Chance. Everyone is just waiting."

Again. Really? We've been here 37 days... 5 weeks and 2 days. We've been waiting. Waiting for surgery. Waiting for him to wake up. Waiting for answers. Waiting to go home. Waiting to go to rehab. Waiting for progress. This book was published the year I was born... how could it relate so much? I cried. I tried to choke back the tears, I didn't want Todd to hear the tremble in my voice. I wanted him to hear confidence, love, and strength. These are the things he needs most right now. It took everything in me, but it was important that I finished this book. He needed to know that you can't give up. Even, when things are hard, even when they hurt, you have to keep fighting. 

I finished the book in tears. I wanted so badly for him to wake up. For him to read the book to me. This is the part where he is supposed to look at me and say, 'Mommy, it'll be okay.' 

We'll continue to read to him and all I can hope is that one day he will wake up and tell me he remembered it and that it helped. 

Dreams

I'm  usually not one to remember my dreams and even if I do... I don't remember them quite so vividly.

Since we've been in the hospital I've had multiple dreams about Todd. I would like to say that some of them have been good. In theory, yes, they are good dreams, but when you wake up to reality afterwards... there is nothing good about them.

The first two dreams I had were terrible. These must stem from my fear of having another child after all of this. In both dreams Todd had a brother, very close in age. I don't remember the specifics, but there was a child that was hospitalized (like Todd) after the same event and we were going through what we have been going through with Todd. The other child was not so lucky. He had the same condition, but he didn't make it. In the dream these events were happening at the same time. I was going through the loss of a child as well as not knowing if the other one would survive or not. I do have concerns about having another child. I think if Todd makes a full recovery I would be more okay with the idea, but depending on his recovery... and how much care he might need, I don't know that it would a) be plausible to have another child or b) be fair to either child. Yes, I know these thoughts are premature, but none the less still scary and uncomfortable.

The next few dreams I had were the 'good' ones. I say they were good because Todd made a full recovery in them. To wake up after a dream like that is absolute torture. We don't know much of a recovery Todd will make. All I want is for him to talk to me and laugh, smile, and play again. Todd can't communicate with us right now, he hasn't even opened his eyes after his surgery 9 days ago... so sometimes I think, maybe there is this subconscious connection you have with your child and that's his way of visiting me... communicating with me. You'll tell yourself anything to make yourself feel better.

Before the surgery I saw Todd come out. I saw his personality, his fire. That was reassuring. I haven't seen it since that morning when we dropped him off in the OR. He's been very sick since then with going into congestive heart failure and spiking fevers etc.

I wish I could take these dreams away. I don't enjoy either type. If anything, I'd rather have a dream that serves as a premonition... one that actually tells me how this turns out. I know that won't happen and even if it did... I wouldn't know that was what it was until it served to be true.

(Falling asleep anywhere in 2009)

Emotional Roller Coaster

It's called the 'ICU Roller Coaster.' I've prepared family members for this occurrence many times. 'It'll get worse before it gets better.' 'There will be good days and bad days.' 'Prepare yourself.' 

It's completely different when you're on this side. When it's your family member. When it's your child.

We've gone from days of being touch and go, not knowing if we'd make it through the night to laughing and smiling. 

How exhausting. How miserable. 

We've been here 5 weeks and 1 day. Todd's had multiple complications. 

1. Pulmonary edema, pleural effusions, pneumonia...
2. Cardiac arrest, bradycardia, congestive heart failure, increased BNP, fever
3. Lethargy, neurological deficits, unable to follow commands
4. Constipation, impaired gastric motility
5. Ascites, fluid overload, 3rd spacing
6. Impaired kidney function, inability to expel bladder, increased creatinine 

& many more...

I treasure the days when he used to smile. When he used to laugh. The days when he looked at me and I knew he recognized me. He hasn't woken up since his surgery 8 days ago. I keep reminding myself he's on a lot of medication, but he already had neurological deficits before that. 

I try to stay hopeful. I try to stay positive. I hang on to those moments. We were lucky enough to capture some on camera. It's hard to get excited when he's doing well. It's hard to keep from getting pessimistic. Then you beat yourself up when you slip up and have pessimistic thoughts. It's hard to not feel utterly defeated when we've had a quiet couple of days where we've been moving in the right direction and then all of a sudden something happens. Something unexpected. 

When people ask how he's doing it's hard to answer. He's not fine. This isn't normal for my child. He won't be fine till he's home, laughing, running around and playing. At the same time, you can't say that he isn't doing good. People jump to the worst conclusions. What do you say? The question itself sends you on a roller coaster. How do I REALLY feel about how he's doing? Am I being overly hopeful? Am I being optimistic or unrealistic? One thing goes right, but then four more go wrong. 

At one point we thought we'd be in rehab by now. Rehab isn't even on the table right now. Too many complications. 

There isn't much you can do for yourself at this point. You just have to finish the ride. 

The Lion Hat

          I guess at some point I should explain the 'Heart of a Lion' & 'Lion Head/Hat/Heart' terms... I guess some people know already. It wasn't even anything I did, but it grew, and it spread like wildfire... and the definition of lion heart? Oh, too good to be true.
          Todd has a hat with matching gloves that he wears when it's cold.... and for kickball games in the middle of March. I still, to this day, do not remember who bought it for him, it certainly wasn't me. I thought it looked ridiculous at first, but then it grew on me. Todd loved wearing it so what could I say? He did look rather adorable. He would come home from school and say someone told him his hat looked ridiculous... I asked him, 'Well what do you think?' He would say, 'I don't care, I'm going to wear it again.' That's my stinker. 
          The hat became quite popular with the staff at O2B. It was like Todd's recognizing feature. There are so many kids, but he's the one with the Lion Hat! All kids get nicknames whether it be from parents, other kids, or counselors... this one came from them. Every day we would pick him up they would say something about that hat. Lion hat turned into Lion head pretty quick. Todd loved it. Todd loves nicknames. He's given me more than I can remember. 
           Todd tried out for and made the JV Purple Hornets kickball team. When they were first having games and practices it was pretty cold so he would wear the hat for its meant purpose. Then they started asking him to wear it to games. He became not only one of their players, but almost a mascot too. These kickball games were quite the event. I first one I was able to make it to was the Friday before all of this happened. They had referees and even a PA system with background music and announcements. When Todd came up to bat/kick they said, 'Next up, Todd 'Lion Head/Hat' Miller!' It was amazing. I felt like I was watching a legitimate adult sporting event. Might I also mention that it was extremely hot that day and in order for Todd to not get too hot he chose to wear nothing under his jersey so he could wear the hat. This kid. He amazes me. 
          The following Tuesday, March 18, is when he went into cardiac arrest. He was at O2B, outside, on the kick ball field. They were getting ready to practice. From what I understand he had the hat on and was ready to go. Later, the staff told me they were all fighting over who got to hold onto the hat and bring it to us since it didn't make it in the ambulance. This little hat, this piece of cloth.... it was so important to so many people. At this point Lion Head/Hat became Lion Heart.
          The next week the staff was busy at work doing stuff for Todd. They made this enormous poster for him with tons of signatures from the kids and staff and they made Lion Heart ribbons to wear. The name continued. O2B also decided to use one of their events as a fund raiser for Todd as well. The term was just fitting. They had stations to color a heart for Todd. They had posters saying Heart of a Lion on them. It was amazing. I knew my child was loved. I knew how much my family loved him, his friends... heck I knew how much I loved him, but I had no idea just how much these people loved him. 
          We've made several room changes since being in the Pediatric ICU. At one point, we were in the Lion Room. I felt, after all of this, it was very fitting. 
          The term 'Heart of a Lion' is an idiom referring to someone who is courageous in the face of adversity. Someone strong a brave despite how hard the situation might be. It means you are passionate about life. That, Todd was. He is all of these things. Especially now, now that he is laying in a hospital bed fighting for his life. 
          This hat deserves a shrine. Once he's up and moving I'm sure I won't be able to get it off of him!