Showing posts with label Diabetes. Show all posts
Showing posts with label Diabetes. Show all posts

Saturday, February 13, 2010

Better



[This is the live version, which I like a lot, but the album version is just as good].
Lately I've been thinking about this song. Maybe because we're at my grandparents' house right now.
I first heard this song last summer. At least, even then I'd felt like I'd heard it before, but I don't know. It was when some of the kids were sick. Josiah was sick, Maura was "sick".
But they had all been feeling so much better, and Maura had slept through the night the night before.
I had put a movie on for them and was checking my email, listening to Pandora radio, when Josiah and Maura both came screaming into the office. And this song came on.
Josiah collapsed, crying because his stomach hurt, and so did Maura, rolling on the floor and screaming, coming out of her skin. And at this time I made a choice. It was a wrong choice. For a little while afterward, I comforted myself with the thought that "nobody should really have to make a decision like that." But I couldn't pretend that very long. Because the truth of the matter is I chose to make a choice I didn't have to.
Both of my siblings really needed me. Josiah was suddenly limp and lethargic, and Maura seemed to be in indescribable pain. She was, but at the time it was easy to believe that she was overreacting. I suppose I've always thought that she had zero pain tolerance, and I chose to use that as an excuse in this situation.
I won't say that Josiah is my favorite sibling, because he's not. But for some reason he's the person I can most easily communicate love and affection to. He's just easier for me to deal with.
At that time, for whatever selfish reason, I felt I could only deal with one of them. Both were lying on the ground, and I chose one person to attend to. I chose Josiah. I told myself it was because he was the baby, he was probably sicker, he was probably in more pain, etc.
And I told my little four-year-old sister, whose pancreas was beginning to fail her, to stop being a baby and act like a big girl. I said I was very sorry but I couldn't make it better and she needed to try and be strong because there was nothing I or anybody else could do to fix it, and I had to take care of Josiah.
All this happened while the song played. I held Josiah and we just sat and listened. I don't think I really thought it through then, but subconsciously, my decision was already bothering me. Maura left and cried in the living room. The song ended, and Josiah started to cry again. I looked it up on Youtube and he stopped crying to listen. I suppose this should have been a broad hint that he wasn't in any sort of excruciating pain. I suppose I didn't see it that way.
But I did feel badly because I gave Maura medicine, several times. It would make her feel better for a little while and then the pain would start up, worse, it seemed. My parents were gone, since we had all thought they were better. There were several moments - especially that one, when the two of them were writhing on the floor and crying - that I almost called them and begged them to come home, something I had never done. I also wished so bad they would take Maura to the hospital, something I never vocalized, but now I wish I had.
But I didn't call my parents. Once through the bad moments I would realize it wasn't logical, they couldn't fix anything, they might as well be able to go out together and do a few errands.
Later I thought about the medicine I gave her, and wondered how much sugar it had in it, how wildly it drove her blood sugar up.
When my parents got home I was somehow angry with them for leaving me with those sick children, not able to explain what had happened or why it was so bad. Now I realize it wasn't because their pain was so traumatic, but my own choice of catering to one child and completely neglecting the other made it a painful experience. I failed my sister, I failed both of them, really.
Later, when my sister was in the hospital, being treated for her Type 1 diabetes, and I was at my grandparents with the rest of the kids, I know I looked up this song up on Youtube and listening to it again. . .and again. . . and again. I wanted to be able to ask her that - "Will you feel better?" I suppose I was wondering it myself.
As often happens to me, I remember nothing else about those days at my grandparents' - two or three, I think. Even the song I have no conscious, clear memory of. I can't see it in my mind's eye, I only know I did. I can hear the music.
This is strange because I was caring for five other children. I know I must have made them lunch, maybe even breakfast, but I don't remember. Did I leave that to my next eldest siblings? I hope not. I don't think I would. It does bother me that I don't remember eating. I don't remember anything at all. I remember the visit to the hospital, but sometimes I worry that this memory too will fade. I can't remember if we went once or twice. I sort of remember the first drive there, and I remember one ride back.
But I remember this song. I know there must have been my five other siblings in that house, talking, watching TV, playing outside in the sun. The place would have been filled with noise and life as it always is. I know it was because I dimly remember the angry feeling that they weren't taking things seriously.
But in my memory I'm sitting there, in front of the computer, as 'Better' plays, over and over again. I'm completely alone, and everything is silent except for the music, even though I know that's not the way it was. I was probably never alone for a moment. But I guess in an abstract sense, I was alone the whole time. It's probably a deep reflection of my own selfishness, and I hope I took care of the kids. I hope I didn't leave them alone, but that fact is I just can't remember.
And sometimes, now, when Maura is sitting somewhere resting while all the other kids play because her blood sugar is low and she feels awful, I have to wonder. As our lives go on all around her, as the house is filled with the noise of everybody else carrying on as usual, I wonder if later she remembers sitting at a blank and empty table in an empty house while she waits to feel better, all by herself. Maybe childhood protects people from such things, but I don't know.
Only a few days ago she got very low and felt awful. Her blood sugars having been going up and down a lot lately. I saw her sitting on the couch and staring into space. The other kids were all playing. I wanted to do something for her but unfortunately I had no idea what. I didn't think my affection would be particularly well-received at that moment. I was walking towards her, when Josiah came to me, whining and crying a little about something. I can't remember what any more. I stopped and knelt to talk to him, and pick him up, but I kept looking over at her and wanting to get away, the most terrible guilty feeling in the pit of my stomach. I didn't understand why.
So I made him happy, and then I went to Maura. It was only later that I realized I had recreated that awful situation all over again. I was probably attending to him during the moments when she needed me most.
She had done her own hair, with all sorts of different clips in it, and I sat really softly beside her and touched her head really softly, because I wasn't sure if she'd want to talk to me.
"Do you feel better yet?" I asked.
"No." She said.
I thought she would tell me to go away or stop messing with her hair, but she didn't. She didn't seem to notice me or anybody else. And then I wondered if this was just something she'd have to be alone in. Even if I sat next to her and held her hand, if she was still going to be alone no matter what.
And because we were at my grandparents, I again remembered all this. I remembered, also, how she looked on that hospital bed - so little and white and frail, like it would swallow her up, and the IV in her arm. I remembered how I had asked her, "Is it sore?" And then almost cried. . . throughout the whole visit, how I kept thinking; better, better, better - I want to make it better.
And I had to understand that I couldn't fix her. Nothing I had done had helped or would help. But that entire time, to me, is marked by the word 'better'. We were all saying, hoping it, thinking it. It still sprinkles our vocabulary too much, and in a different way than it did before.
So I knew I had to write about it, to let it go. I still can't make it better. No matter how much we ever 'manage' her diabetes, she'll still have to wait 15 minutes to feel better again after her blood sugar gets very low or high.
I'm just hoping that she's not always alone during those bad times.
I'm trying to see the bright side of these things. I suppose it can help me learn not to care for whoever is easiest for me to understand, to communicate better on the things that matter, and not to retreat so far into myself and my guilt at whatever calamitous situation I've created by my own stupidity that I can't remember months later if I fed my own family.
So that's the story, and I hope that writing this will help me let it go. I'm sure I'll regret posting something so personal and ridiculous later. Oh well, too late.

Wednesday, July 22, 2009

This Summer (so far)

Well, here I am, back again, trying to write something after a very interesting summer, and despite the fact that my computer seems intent on translating my posts into Hindi. Which is strange, because I don't even read Hindi.
Like I said, we've had an interesting summer. Went to see some relatives in New York--I tried to post from there, actually, but the computer and I just weren't working well together so I decided to wait until I got home.
The day we came home I was rather sick, and the next day was a bit sicker, but felt better after that. Unfortunately Josiah and Maura, who are four and two, got sick as well. They both had it pretty bad. But Josiah got better and Maura didn't. She was up all night for days with agonizing stomach cramps that kept she and my parents from sleeping. They were all very exhausted. It was so painful she never wanted me to even help her--she always wanted my mom.
Finally it all culminated rather dramatically, and my sister was taken to the urgent care. . . and then the ER. . . her blood sugar was amazingly high.
So she was diagnosed with Type 1 diabetes and taken to Levine Children's Hospital. The staff was spectacular there, very kind and understanding. I think she was there for three days.
Initially she hated the idea of shots, but has adapted to the idea rather quickly. Although she still hates having to have two shots at bedtime. . . altogether she has five shots a day. She's going to get an insulin pump eventually. Diabetic people with pumps generally live longer, healthier lives. It makes it easy to closely monitor your body and therefore respond more accurately to one's own specific needs.
So that's that. We've all been eating much more healthily, which has been very good for all of us. It would appear that Maura also has Celiac's Disease, so she can't have wheat, and while the rest of us had been doing so (although much less than we used to) but we've all stopped eating sugary foods. Although my parents and I still have sugar in our coffee and I frantically scrounge up sweets whenever given the opportunity, because I am an addict.
However, I've been jogging (almost!) every evening. At least I think I'm jogging. . . maybe I'm running. I don't know what I do. But anyways, I do it. And I've been drinking the proper amount of water, which makes all the difference.
My mom is getting on in her pregnancy. She has a beautiful round belly, and we've actually started making baby-coming preparations--getting clothes out for it and things like that. I'd sort of like another brother, but I won't mind if it's a girl, either. A girl would balance things out!
So that's our summer so far. . .