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. 

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.

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.

Exhaustion

I thought I knew what tired was. I was wrong.

We've reverted back to the days where they say, 'Sleep when the baby sleeps.' This is so true right now. We have to get our sleep in when Todd does. For a few weeks getting 3 consecutive hours was an absolute blessing. I managed to get 7 hours total last night! Yes, it was broken up, but STILL!!

With a newborn, typically, you can find a way to soothe them. Whether it be feeding them, changing them, holding them etc. Since he storms, most of any of that would just make the storm worse. Except for changing him, he lets us know when he's wet, sometimes that will help if that's what the problem is. It's so hard to wake up in the middle of the night to one of the storms and not be able to do anything. There's nothing you can do, but you can't go back to sleep. How do you go back to sleep when your child looks and sounds like they are in pain? You have to ride it out.

It's been suggested to me, by multiple people, to go home, nap, rest. When I do go home, which is becoming more frequent, I can't stay there. I go in, do what I need to do and leave. It's uncomfortably quiet and still. Not to mention I already got one awful phone call to rush to a hospital... I don't want another. Not when I know I can be here. On one trip home I did attempt to sit down, watch tv, maybe even nap... I couldn't. I longed to come back. I wanted to be by his side. That's my comfort zone. This is where I am comfortable. He needs me and I need him. I know everyone is worried about caregiver fatigue and that when the time comes that I really am providing full care that I'll be exhausted, but honestly it's more exhausting forcing myself to do something that doesn't feel right.

I will admit that the first two weeks I did not take care of myself. Yes, guilty. I think I might have gone like 5 days without a shower and skipped several meals. But since then I've learned to cope better, I know I need to take care of myself and I have. Brian and I have started taking turns/shifts getting up with Todd, going out, having down time and it seems to be working well.

It's easier to rest when you have an end in sight. When you have a timeline. There is so much going on with him that there is no real way to put a timeline on it and that just makes it worse. It's hard to push through. We're trying to stay positive and trying to hang on to the good moments. Those are what really keep us going.

(working with PT/OT this morning)

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.

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)

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!

Leaving

I didn't leave the hospital for over two weeks. The most I did was walk outside or walk to the other tower where my unit is. I couldn't leave. I couldn't be that far away from him. I was told to go home. Get some rest. Sleep in your own bed. Shower in your own bathroom. Go home? That isn't my home anymore. They say, 'home is where your heart is.' My heart was not there, not in that building. My home is with my child, my fiance, my dogs, my cat... my home is now in this hospital. Luckily for me the hospital wasn't a foreign place to me. Yeah, it was a different unit, but the equipment is the same, the processes are the same, and I was treated like family by the staff. I was one of them, one of their own. I already got the call once to come rushing to the hospital, I didn't want to get that same phone call again. I'm more comfortable here, more relaxed... at ease. Fortunately I've learned to tune out half the alarms. Something called alarm exhaustion. Lucky for that.
         Once I could tolerate the idea of leaving I went on several errands with Brian: to the bank, to pick up food etc. I wasn't ready to get back in my car. I wasn't ready to see the dumped out bag and complete mess that I had left from rushing to the hospital. I didn't want to see his car seat. There was still sand in my car from going to visit my mother that weekend at the beach. I knew I'd get upset. But, I started going places on my own. Not far. I went to the bank on my own. I went to the store. I gradually got stronger and braver.
          I knew at some point I would have to go home. I knew it would feel empty. I knew how I'd feel when I saw his room. At first I decided I wasn't going home until he was with me. After 3 weeks... that didn't seem very plausible. At some point I needed to face it, I needed to face the feelings. I didn't know if I wanted to do it alone or if I wanted someone with me. I didn't know if I wanted to spend time there or if I just wanted to run in and run out. I was already planning to go to the bank that day and on my way out one of Todd's nurses encouraged me to go get my nails done. To do something nice for myself. There was a nail place across from the bank, I figured I could manage that. Just as I was leaving I got a burst of courage. It was time. I needed to do this and I needed to do it by myself.
          It felt emptier than before we moved in. So still. So lifeless. Todd really did bring the life into our home. My cat has still been staying there, she's very self sufficient, she probably enjoyed the vacation from the dogs. She came rushing to the door to greet me. I laid in the floor with her for a few moments. She's a very affectionate cat to begin with, but she was so loving, so comforting. I carried her with me upstairs. I went straight into his room and sat on the bed. So still. I burst into tears. I allowed myself to feel what I needed to feel. I let myself cry. I let myself reflect over the past three weeks. All that has changed. All that has happened. What was to come. I was overwhelmed with thoughts so I geared my focus on what I wanted to bring back to the hospital. There were a couple things I had asked people to get, but no one could find. I found them of course.
         I told my cat goodbye... poor thing, I only spent fifteen minutes there. As I drove away I felt somewhat liberated. I was no longer scared to go home, I was no longer avoiding it. It's not a place of comfort right now and I can accept that. It is what it is. It houses our things; ready for us to pick up where we left off.
         I've been back several times since then. Sometimes just to grab things, switch out clothes, check the mail, see my cat etc. Each time I'm able to stay longer. It still won't be home until he's back in it. He's that magic ingredient. He's the last piece to the puzzle.

Necklace & Key Chain Fundraiser

To get your necklace or key chain: message Amye Morris on Facebook with your order!

https://www.facebook.com/amye.morris.52?fref=ts

Mail checks to:
Amye Morris
415 Sandleton Way
Evans, GA. 30809

Make checks payable to The Good Spur.

Please include $3 for shipping

$20 for necklace 
$15 for key chain

Community Support

Not that this is the way you want to make acquaintances and life long friends, but I have to say that everyone has come together for us. Even people I least expected it from. I don't know if it's just a country music song or if it's an actual saying, but 'You find out who your friends are' is one of the truest phrases I've ever heard. When something tragic like this happens, the real people, the good people come out. Not just the ones that you expect, but the truly good people out there.
        I used to be a fairly pessimistic person with a poor outlook on the general population. I felt like everyone was only out to better themselves or their situation without a care in the world as to how they were affecting others. So many people have proved me wrong. I've never been so happy to be wrong in my life. I am also wrong on other accounts. There are people I expected to be here that aren't. People that I thought would be there no matter what. Again, you find out who your friends are. I don't dwell on that much. I have too much support and love around me to let those few people get me down.
          We still have doctors and nurses from the first hospital texting and calling us to find out how Todd is doing. He was at that hospital less than an hour. These are truly good people. Some of the paramedics are keeping up with him through my Facebook posts. The staff at O2B have come by in mass, called, text, and even thrown fundraisers for Todd. Friends of friends are donating money to us to help pay our bills and medical expenses. Who knew there were still good people out there?
          There are people that check in with me on a daily/weekly/biweekly basis now that I hadn't talked to in months or even been very close to. I don't know what I would do without these people now. I look forward to their questions. I look forward to hearing from them. Though some of them I know so little about their lives, mine is an open book right now and it doesn't bother me.
          There are kids that Todd knows that want to do fundraisers. Twin girls that he is friends with are setting up a lemonade stand for him at their mom's garage sale, their idea! Another friend of a friend is making necklaces to sell to give us the proceeds, this woman doesn't even know me. My father works at Ford Motor Company at the headquarters in Detroit, MI. They held a bake sale for us. The profits were tremendous. I've never met half of those people. There are truly good people in the world all the way from the Elementary school to the older generations.
          I work with a lot of people, from nurses to respiratory therapists, to techs, to doctors, to PT, OT, etc. So many of these people, some I rarely talk to, some I thought didn't even like me, have reached out to me. If there was ever a time to feel alone.... this is NOT it. There are still moments where I feel alone, lonely, small, and insignificant... but, I think that goes with the situation. You're just going to feel like crap sometimes. But those crappy times don't hurt as much, don't happen as often, because I have all of these people around me. I can never thank everyone enough. When I'm too exhausted to focus on Todd, his illness, his situation... I'm able to focus on all these people. All these actions. Thank you.