She Misses Her Too

After hours of trying to put Sarah to bed, I finally got her to fall asleep.

I was so sure that Sarah was full of excitement because she stood up by herself today. She grabbed onto my wheel and with a push, she stood up. All on her own. I was (and still am) proud of her. She's growing up so fast and exploring the world around her.

So when she sat in my lap and didn't fell asleep, I thought she was just still too excited to sleep. I didn't think Sarah would miss Mom. I just didn't even think that was possible.

Or maybe I was naïve.

As a last resort I played one of the bedtime stories that Mom had recorded and I put Sarah right in my parents bed and lay right next to her. Within minutes, she felt asleep.

I guess she just needed to hear Mom's voice and be in my parents bed.
I didn't think Sarah would know Mom when she only knew Mom for 4 some months.
I didn't think Sarah would remember Mom.
I didn't think Sarah would miss Mom.

But I was wrong.
She misses her too.

She misses you too Mama. She's missing you too.
I love you, Mama.

Wake Up Matt

When we were told I have Spinal Cord Injury, we knew there will be complications.

But somehow, subconsciously I've ignored that fact for the longest time. And somehow, my body have a way of reminding me. The UTI's, the fevers, Autonomic Dysreflexia, and now, Muscle Atrophy.

I'm not sure why I ignored it for so long, thinking that it'll just disappear if I don't think about it or don't worry much about it. I'm not sure why I'm not facing it head on and I'm ignoring the fact that I will have complications for the rest of my life, I don't know. I just ignore all of it.

Until, of course, it's blowing up right in my face.

Last week, my Physical Therapist told Mom and me that we might want to make an appointment with the doctor. When I heard Muscle Atrophy from my PT, I ignored it. In fact, my brain was thinking more of the weekend when I get to spend time with Nicole and go to a Craig Morgan concert together. I didn't even hear a word my PT had to say and well...maybe I didn't want to hear it. Or maybe I want to hear it from someone who spend years and years of their life in school. Just so I know for sure this is happening.

Well today...I know for a fact it's happening.

For those who don't know what Muscle Atrophy is, basically you are losing your muscle mass because you're not moving that part of your body (and no, old age got nothing to do with it) and well with paralysis, that's kind of a given. "Muscle Atrophy can contribute to more problems- and more pain- as it gets worse." My doctor said to me. Physical Therapy was supposed to help. But not for me. Something is just not right and well, PT didn't help.

So, starting from this week, I'm going to be on the FES bike (which is basically a stationary bike that "shocks" my muscles as it's moving...supposedly stimulating riding a bike and moving those muscles) more than I ever have before. My PT is going to be working her ass off trying to get these muscles going. (Poor her...I seem to make her job more interesting by the day...) I'm going to be on more supplements than ever (joy...more pills...) and Mom is looking into the possibility of getting an Endless Pool (ya right...in my dreams) for therapy purposes. We'll most likely end up trying to find the nearest place that have an Endless Pool so I hope in there and work 'em muscles as often as I can.

FES Bike

Doc gave us a couple months to see if the muscles will get better and worse comes the worse, I might need to do some Ultrasound therapy or even surgery. Let's hope we don't have to get there.

There are a few decent news lately: I got to spend time with Nicole on Saturday, the concert was amazing and BD's and Sushi Den was amazing also. Thanks to Kiev for suggesting 'em places for us.

Since Nicole is living all the way out in NC and trying to get her mind ready for Basic, I'm still trying to make sure that we see each other as often as possible before she leaves without breaking either her (and my) non-existing wallet. I asked her to go to the Winter Dance with me as a way of spending and celebrating Valentines Day early (and so either her or I have to spend more money trying to see each other) Now I just got think of something to give her. This is going to be a toughy so if you think you know your gifts for a girl during Valentines Day, Twitter me or contact me please, thanks.

Lastly, I finished Dr. Sanjay Gupta's Cheating Death (and starting to read SuperFreakonomics: Global Cooling, Patriotic Prostitutes, and Why Suicide Bombers Should Buy Life Insurance by Steven D. Levitt and Stephen J. Dubner) I am truly amazed what medicine can achieve if we just give it a chance. Be sure to look out for a review of the book over at Knuckles Reviews soon.

Naive. Sick. Thinking.

Right now, I can't sleep. I got this horrible fever that I can't break nor can I breathe without this oxygen mask on me. I haven't been feeling well at all, even with the amount of time I spend sleeping these days. Whatever it is I have...horrible and I'm sick of it. This is one of many reason I why I hate being sick. It gives me too much time to sick or lay here just thinking and not doing anything. Which in ways, it's horrible.

I've been thinking a lot about Dad and Sean lately. Dad still isn't back yet and Mom's due soon and geeze I get sick at the worse time, ever.

I remember when Sean was getting treatment, I would sit by his bed (or on his bed) and some times, I would watch him sleep. I'd wonder if the poison that was dripping into his veins would do the trick, wondering if anything was growing in his brain. I remember wondering if my Aunt and Uncle would have to bury Sean, I remember thanking God for Sean and everyone in the family and wonder if all this he's doing is all part of his plan. Sean's always been a smart one. I remember when we had his latest MRI, he was sitting in his room and he told me, "It's back Cousin Matty. In my head, it's back!" and I remember telling him don't be silly and everything will be ok. Now I'm wondering if he knew it all along, he sure is a smart man.

At times, I wonder if I can just take Sean and run away. Hoping that the tumor and sickness won't hurt him anymore. Silly of me I guess. Within just 2 weeks, what was a small tumor the size of a nail turned into a tumors and sizes of a dollar and spreading like a germ and wildfire. It all seem like yesterday. Seems like yesterday he was just sitting in my lap, smiling and joking around. Seems like yesterday he took his last step, held his blankie, ate on his own, talked, and so much more. Really all seem like yesterday...I remember all the emotion that everyone in the family was feeling, that sadness, that pain, and so much more. We're all expected him to go to Heaven soon but that fear just scare the hell out of you. The fear I see when I saw him taking his last breath, his last heartbeat.

I remember reading somewhere that every day, 6 families will see their love ones leaving for Heaven. I remember thinking that can never be us, at least not this early.

I can be really naive sometimes.

I remember saying to myself that 45,000 troops is what Mr. President will go with. I remember yelling at the TV saying 45,000 troops. Then I realize people don't even know what really is going on. People hear about the troops and units being send overseas constantly but people don't really hear or think about those who deploy without us even knowing it. I've been ask before what my Dad does and I just told 'em "He's Army" and move on. I don't think people realize not everything in the Army is out in the open. And even when they hear about the 45,000 troops that will be needed for Afghanistan, they don't know or don't think about the people already there or in other parts of the world. I don't think people know what to ay when you tell 'em that your Dad isn't part of the usual group of Army. They tend to say "cool" and "sweet" and nothing more. Because they don't know what to say. Ya it's cool sometimes but really...it's more than being cool.

Sometimes, it's about staying up late or waking up early with nightmares wondering where Dad is, if he's okay, safe, and when he'll be coming home. The nerve of him being here one day smoking your butt out and the next he can be anywhere else in the word. And it tends to happen when I got nothing to do, when there's less things to worry about or more time to wonder about things like that.

I'm sick really sick and not sure when I'll get better. Soon I hope, really, so I don't have to have time to think about the stupid things. So I can have more time taking care of Mom and the new baby, so I'm not laying in the hospital bed wondering and thinking about the unthinkable.

God I can use a drink right now or at least a smoke.

Stupidity, Ignorance, and Extremely Careless

It's almost 0300 and I am wide awake. At this point I'm not sure if it's the excitement/dread of moving that is keeping me up or the fact that I just want to make sure Sean is okay. As much as I would like to tell myself that he is, sad truth is, he's not.

And for some reason laying in this bed with him, listening to music while he lay his head against my shoulder my mind started wondering. The big c is something we as a society try not to think about. We all know what it is, we know what people have to go through to fight this monster, but we don't think about it enough. We don't think about the sick adults and children. We don't think about their families, what they have to go through, the emotional and physical pain. And somehow, a simple "I can't imagine what you're going through." just passes through the mouth like saying "Hello"

But, for some reason, I started to wonder. And just like that, I read pages after pages of what Medulloblastoma is, how it affects the body and so much more. I didn't even know there were different kinds of brain cancer let alone pronouncing the damn word. I feel stupid, naive, not to mention extremely careless of what's going on around me. And the more I read, the more question I have. The more I read, the more I wonder how smart I really am.

And for a moment I wish I can call up my old schools and tell them to get rid of my GPA all together. I don't at all deserve this GPA and these grades. I can't believe how ignorant, stupid, or whatever you want to call me.

And looking at these pages then back at Sean, I wonder if he knows what I'm reading. I wonder if he knows what's going on inside my head. And parts of me feared that he will ask what I'm doing, why I'm looking so serious into the screen for and how come he's sick. How do you answer Medulloblastoma to a 5 year old kid? He knows he's sick, he probably doesn't care why he's sick. He knows already and it's hard to explain in more detail of what he already knows.

And I thought answering the birds and the bees question would be hard. This, this is hard.

And that's just touching the surface. I can tell he's got questions but afraid to ask them. He's got more questions than just being sick but questions about his parents, where they're at, why can't they come home right now, and so much more.

And with that, I seem to run out of all ideas and answers. I just smile at him with the most stupid look on my face as possible and hopefully that he'll forget everything.