I've had some time to think about Aly's diagnosis now. I've actually had 8 months to think about it, they mentioned the possibility last June. But now that the actual diagnosis has been made "thinking" about it takes on a whole new form. Will she read these blogs someday and think her mom is crazy? I hope she will read them and not remember the things I write about bc she will have been healthy for so long. I'm relieved and then feel guilty about being relieved. I'm scared and then feel guilty about being scared. I'm thankful and I don't feel guilty about being thankful. On one hand things could be so much worse at this point. She looks like a normal little girl so it's hard for people to understand how sick she is. It's hard for US to understand how sick she is sometimes. How can a little girl that runs around the house, plays dress up, pushes her babies in strollers and wrestles with her big brother be so fragile? I realized last night (for the hundreth time) how fragile she is; I was dancing with her and Cade in the living room and had ahold of her hand/wrist, everytime I moved her arm around her little wrist would pop under my hand. It wasn't popping out of socket like her elbow does sometimes but it was just popping like there was no muscle support to it. She's so "normal" in so many ways and so "abnormal" in so many others. The doctors have taught us that there is a difference in "normal" and "normal for Aly", normal for Aly is definately not "normal". Our way of thinking has changed. I wish I could make the world understand just what is wrong but I don't fully understand exactly what is wrong. I know she is day to day, today she is good, tomorrow she may be great and Sunday she could be in the hospital. It's a crazy way to live a little life. I feel so bad that she has had to endure everything she has, from so many surgeries, to digging in her little arm for IVs, to throwing up almost everyday. She is a trained "puke professional", so much so that I think she can almost make herself or try to stop herself from throwing up. She gets a feeding and says "I didn't puke!" like it's a big accomplishment. I also have some feelings that I'm ashamed to admit. I'm SO grateful for her mental/physical development, I wouldn't change it for anything in the world but I find myself wondering if it would be easier on her if she didn't "know" as much as she does. Alot of kids that have major health problems are so delayed that although they are enduring many medical treatments they don't really know that they are. That prevents them from being scared or knowing what is coming. Aly knows exactly what is happening to her at the time and she knows enough to be scared. Not just scared like alot of kids are at the doctor about getting a shot but truly scared to walk in the door of anything that remotely looks like a doctors office/hospital. We drive down the Lloyd Exp and pass the Deaconess Gateway campus and she starts crying. She can tell you exactly what happens when she gets an IV or her leg gets cut open for surgery or how they put swabs in her nose/throat to see what infection she has this time. She uses her play phones to call her baby dolls doctors b/c they are sick and need a "needle in their arm". I think she may grow up to be a doctor or nurse b/c she has the whole routine down pat. She could probably do the whole process herself if she were big enough.
Aly will be 3 on Monday and this has been an interesting 3 years. I'm hoping now that we know what is wrong we can continue on this journey by "maintaining" Aly rather than "testing" Aly. Although maintaining her is becoming increasing more difficult too. 6 medicines 3 times a day, 2 bolus feedings, 2 or more breathing treatments and 12 hours on her feeding pump all in 24 hours is alot for a 3 year old. She knows no other life though. Cade knows no other life either and I feel bad about that. He's 5 and doesn't remember life before Aly was sick. He definately loves his sister but it's obvious he resents her too. It's also obvious he resents me. I'm the one that takes her to doctors/hospitals/therapy and he goes to grandma's or stays with dad.
I am not in control of the situation so why do I find myself trying to control it? How can I change this or do this better? How can I get Cade to understand and stop taking his frustrations out on me? Why do I even care that he's taking his frustrations out on me, afterall he's 5 and didn't ask for all this either. ahhhh, oh well. Such is life and I can't change it. I'm thankful for it though. I'm thankful for the notes that Cade slides under the bathroom door when I'm in the shower, I'm thankful for Aly's arms that hug me and say "momma, I love you so much", I'm thankful for the girl that wraps her baby doll in a blanket then brings it to me and says "you be good, i'll be back to pick you up". I'm thankful that Cade gets off the racetrack runs up to me and says "mom, did you see me? are you proud?". I am proud. I'm proud and I'm thankful.
No comments:
Post a Comment