I am likely one of the suckiest bloggers out there....few and far in between. Oh well, I suppose this is more for my benefit than anyone else's.
So here I am, 1:30AM on Sunday night/Monday morning, and my blog is all I have to talk to. Really, with the type of person I am, I'd much rather vent this into a personal journal (which I'm just as awesome about keeping current with content), but that is not convenient to me right now. You see, everybody else is asleep and a paper journal does not illuminate itself like a pc does...turning on a lamp would draw too much attention. Tonight is one of the rare nights that Sarah is sleeping--and it's even more rare that she is sleeping before me. As it would turn-out, it appears that tonight is my turn.
I'd prefer to keep it all to myself, but I came to a conclusion when I pondered why I would share with "you." I get so many comments in life (now that my boy has fought his long, hard fight and passed away) about how strong I am, and how well I keep it together, and how I'm such an example for others by staying composed day by day. The not so shocking truth is that I don't. Sure, I'm not a blubbering, depressed mess infront of everybody I encounter--my personality is one that keeps grieving more private--but that doesn't mean I'm not a blubbering depressed mess.
The truth is: I don't keep it together, and that shouldn't surprise anybody. Take for instance...let's say...now. Okay, I don't blubber, and I really don't get depressed (at least not in the "suicidal, pity me, nobody cares, and oh by the way I'm worthless" sense). But I get sad, I physically grieve, and right now my soul aches with that grief. No matter how hard I squeeze my eyes shut, I cannot hold back the tears that are streaming out. Breathing is difficult at best. My sybmolic broken heart manifests as throbbing pain in my chest around the real one. And my face contorts as if I am in physical pain. All the while, I endure this as quietly possible so as not to disturb the rest of the family....including the one sleeping right next to me (boy, she's going to be pissed when she reads this!)
What did it? I really should have seen it coming, but I suppose I still never would have under any circumstances. It's been lots of remembering and noticing that things just aren't the way they "should" be. I was working on scouting stuff tonight as Sarah watched a memorial video for another child that just passed from mitochondrial disease. I could help but glance over, and think "gosh, they all seem to look the same throughout their short lives." It's not a literal "same" but the similarities are striking as experiences are had, options are exhausted, and they finally reach the end.
Of course, that video got me thinking about Cooper's--that his maternal aunts put together for his services. Then, Sarah went and put that in her drive and watched it. My eyes welled with tears, and I tried to blink them away, as I watched pictures of my boy fade in and out. He was so beautiful. Life with him was so wonderful. But even that didn't do it.
When you miss one of your children that much, it's like you HAVE to go kiss the others and tell them that you love them as soon as possible...just in case you don't ever get that chance again. The thing is they ALL look alike, so I can see Cooper in every one of their own indiviually beautiful faces. Nope, that didn't do it either. But I started feeling kinda "off" at that point, though. So I went downstairs and got something to eat...I suppose it beats drinking myself to sleep. And, yes, I fully recognized that it was that kind of eating that you do just to take your mind off of things....didn't work.
This morning, in church, the choir sang "On Eagle's Wings." It's a standard for me...I sang it when I was in the youth choir in church. It was sung at Samuel's funeral; it was sung at Cooper's funeral; and it was even in the video that Sarah was watching online tonight for that little girl. Sarah got upset, and couldn't control her grieving. Like I said, it's a standard for me, so I don't really associate it with Cooper and his funeral....so, no, that didn't do it either.
Then I threw caution to the wind. When Sarah was crying during church, I thought to myself "I can listen to 'You Hold Me Now' and not get upset." Since thinking that, the song was stuck in my head, but in a weird way....I couldn't remember the tune or the words. This song, by the way, was sung by Coop's palative care doctor the night he died, and at his funeral. Well, I finally remembered the song as I lay wide awake in bed realizing it was my turn to not sleep. Then I made the wrong move.
I reached into my briefcase next to the bed, and pulled out my Zune. I listened to the song. Yep, it took me back to that night, and my eyes began to leak a bit. But I really just thought most about how much I missed him. Coop and I shared something special with bedtime and music. Each night, when I put him to bed, I would turn on a cd of Disney lullabies and kiss him good night. Then he would inevitably ask me to sleep with him (on the floor, of course, because apparently that's what I "preferred"...or at least that's what he told mommy, because she always got to sleep on the bed). So there I would lay, quite willingly and very contently, as he drifted off to sleep and the music played. My favorite song was track 4--a piano composition of "House at Pooh Corner."
With my earbuds in, I listened to this music thinking of the comfort it always gave to be there sleeping on his floor. Truthfully, I cried back then too; because I was so worried for him. I knew what was coming, and everything he would have to endure; and I worried so much for him, but at the same time couldn't help but love and admire him. Well, if you guess Track 4 was that straw, you'd be right. As it played, I missed him so much I began to sob uncontrollably....but silently, of course.
And here we are now...it's now 2AM, fyi. Truth be told, the tears really haven't stopped....slowed, but not completely stopped. I miss him. I miss him SO much. Life is tough without him, because it was so great with him. He was my baby boy, and now he's not here to hug and kiss and sleep on the floor next to while he gently snores. As much as we disliked being in the hospital, I'd much rather be strolling through the halls of TCH with him, or playing DS together in the CMH IMU. He's better now, I know he his. But understand that there is a lot of guilt when you bring a child home on Hospice care, even when you know it was the right thing to do.
So, what's the point of an entry like this? It's a funny part about "the cure"...it can hurt too. Did you know that cancer patients are not the only sick people that get chemotherapy? Neither did I, but it makes sense. Transplant patients do too, really sick transplant patients. Cooper got chemotherapy (on a darkly funny side note: there's something gravely humorous about having chemo drugs delivered to your house for your 4 year-old and storing them in the fridge in the bar). There's nothing really important or scary about the word "chemotherapy"; it just means "chemical treatment." What makes it bad is that chemotherapy treatment includes the use of cytotoxins; these are medicines that attack cellular make-up and actually kill cells....hopefully, the bad ones. It's like using arsenic to treat heartworms in dogs--you give them enough to kill the worm, but HOPEFULLY not the dog.
The fact is, you're pretty bad off, and the chemo is going to make you feel a whole lot worse, but at the same it will hopefully make you feel better...eventually. I'm gonna confess to you, I'm pretty bad off. But if you see me out, you won't see that. (Remember, I grieve privately!) The reason I won't be a mess is because of him. Cooper is a cure in my life. He has opened my eyes so that now I see. He he helps me hear all the intricacies of life (every note, chord and crescendo...no matter how slight). He gives me pause for thought. He helps me extract the pointed message in casual exchange. He continues to be everything beautiful and wonderful in life; it is all because of him. The reality of today is sad and painful, but (on days and nights other than tonight) I am able to get the healing that his cure provides.
2:30AM...if this blog entry actually makes it to posting, it'll be lucky. Like I said, this is the stuff of a private journal entry. I'm just as inclined to select-all and delete. But maybe I'll be overtaken in the process, and click the publish button. I accomplished my goal: I got all the words out; I told "somebody." But I think I will post it, because you never know who might be helped by the understanding...I was. If you, the reader, happens to know me "in real life", please don't bring up the aforementioned grief and pain or "how sorry you are for my pain and loss." I'll likely blow it off as nothing; after all, I'm walking around with a smile on my face, aren't I? Plus, I REALLY don't like attention; and that is attention...unwanted attention. It also a really good way for me to continue my less than stellar frequency of blogging.
Almost 3AM: my eyes burn, but not with tiredness. Probably because they are finally empty. Do I re-read the entry? Surprisingly enough, I'm sure I've failed to make or complete some points, and I'm even more sure there are some typos. Nah. Let's see how this one flies. Now...To sleep or not to sleep? That is the question. Who am I kidding? I'll always sleep; I'll just sleep too late now.
...and thank you for The Plumber. Amen.