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.
Friday, February 19, 2010
Tuesday, February 2, 2010
My Restore Story written 9/20/09
I realized today that my life has taken a turn that I didn't see coming-spiritually anyway. In March I went to a women's conference at Holiday Inn that Julie Wells had. There were big high profile speakers-Paula White and Judy Jacobs but Julie spoke the last night. I don't remember a whole lot about what she said but the point that stuck with me was to know WHO you are and when something comes against you to not accept it. That night I had a very deep spiritual change. I'm no stranger to the gifts of the Spirit and I tend to not get caught up in it anymore. Not that I don't believe in it-I just think too much emphasis is put on the manifestation and not the relationship. Anyway, that night I went to the front and without anyone touching me, pushing me, etc. I collapsed to my knees, doubled over and cried (more like wailed) for at least an hour. I could not an did not get up until I knew a change had happened. I am no special person- I can't sing, play an instrument, I'm not a preacher, teacher or leader. I'm not even a pray-er, intercessor, prayer "warrior" or any of the common ministries we hear about in church. I don't really like kids :-) so I'm not a nursery worker or Sunday school teacher. I wasn't the best student so i didn't learn too much in school or college to help me out either. i don't know anything about business, the economy or politics. So what does a relatively boring person do for God? The classic sermon you hear growing up in church is "Today is your day, take your relationship with God to the next level. Let God use you". Okay, that's great and all, but how does a person with no special talent get "used"? I had resigned myself to the fact that my "family" was my ministry. I guess I wasn't one of the people the preachers were talking about.
Well, that night on the floor of the Holiday Inn something changed and I wouldn't realize it completely (and probably still don't) until now. I told God that I knew I was definitely not a "Julie Wells" or "Paula White" but I wanted to do what I can. Whatever that may be, I really had no idea (remember my no talents?), but if He found a place for me, I would follow through.
So having been through some crap (for lack of a better word) during my life has made me have certain feelings about people that place blame on others for their own behavior. I have always felt that blaming a bad childhood for making bad decisions as an adult was a cop out. Granted, I did have some people in my life that made sure I stayed on the "straight and narrow" but I could have easily said " I'm going to do this or that b/c I've had a hard life". Maybe that is why I've always had a soft spot for people in tough situations. Because that could have easily been me. I know what it is like to move from place to place and feel like nothing is stable. I want to help "stabilize" hurting people. If not for them then for their kids-b/c I was one of those kids.
I thought I was emotionally unstable b/c I'd cry when I saw a homeless person, or a mom and baby at a store and the baby was wearing dirty clothes and had no shoes on. So I started giving the homeless person money. Then I realized they were hungry as I was driving down the road eating Burger King. So I carried crackers in my car. A few times I went through a drive thru and brought food for them. It only made me sadder (is that a word?). Sure maybe it helped for a minute but that's all. Maybe the homeless person thought I was emotionally unstable too, who knows. All I knew was I was never going to be able to make a huge difference so I would continue to do what I could.
Then we moved to a big famous church in Florida. The big flashy church had it's appeal to Scotty but the only thing I wanted to do was get involved with ministry they had called Respond. Respond was just starting up, but they had a full time staff member that was the head of Respond. I was SO excited to get involved. So, Respond was going to have a clothing bank, food bank, GED program, Health fair, pregnancy resource center, tutoring program, etc. You name it-they were going to do it. But BIG churches must do BIG things. I went once a week to the church and we talked about what we could do. I made notes and researched statistics on the Internet. They talked about getting government grants. I never saw one person receive a piece of clothing or can of food.
Then we were back home in Evansville. New parents and everything and every relationship had changed. There's still that feeling inside me that i NEED to do something bigger than me but I had not changed or developed any of those talents we talked about. Fast forward 5 years to the doubled over crying my heart out on the floor of the Holiday Inn. I'm sure people saw me and thought I was going through some bad personal issues but really I was just asking God if this really was "it" for me. If it was that was okay but if He had something somewhere that I could do then I was willing and able to do it.
A month later I got an email that had Restore's newsletter in it. I read the newsletter and could not believe it. I went to the website and literally read every word on the site. I cried the whole time and knew that I not only wanted to be involved but I HAD to be involved. There was no way I could go on living normally and know that ministry was going on without me. Like I said before, I'm not a speaker, preacher, teacher, singer or musician but I can sort clothes, and serve food. I can give a hug and a smile to someone who's had a bad day. I can give out diapers and shampoo and know that it really did make a difference. It may not be the "calling" that some people pray for but it's my heart and my "calling".
Well, that night on the floor of the Holiday Inn something changed and I wouldn't realize it completely (and probably still don't) until now. I told God that I knew I was definitely not a "Julie Wells" or "Paula White" but I wanted to do what I can. Whatever that may be, I really had no idea (remember my no talents?), but if He found a place for me, I would follow through.
So having been through some crap (for lack of a better word) during my life has made me have certain feelings about people that place blame on others for their own behavior. I have always felt that blaming a bad childhood for making bad decisions as an adult was a cop out. Granted, I did have some people in my life that made sure I stayed on the "straight and narrow" but I could have easily said " I'm going to do this or that b/c I've had a hard life". Maybe that is why I've always had a soft spot for people in tough situations. Because that could have easily been me. I know what it is like to move from place to place and feel like nothing is stable. I want to help "stabilize" hurting people. If not for them then for their kids-b/c I was one of those kids.
I thought I was emotionally unstable b/c I'd cry when I saw a homeless person, or a mom and baby at a store and the baby was wearing dirty clothes and had no shoes on. So I started giving the homeless person money. Then I realized they were hungry as I was driving down the road eating Burger King. So I carried crackers in my car. A few times I went through a drive thru and brought food for them. It only made me sadder (is that a word?). Sure maybe it helped for a minute but that's all. Maybe the homeless person thought I was emotionally unstable too, who knows. All I knew was I was never going to be able to make a huge difference so I would continue to do what I could.
Then we moved to a big famous church in Florida. The big flashy church had it's appeal to Scotty but the only thing I wanted to do was get involved with ministry they had called Respond. Respond was just starting up, but they had a full time staff member that was the head of Respond. I was SO excited to get involved. So, Respond was going to have a clothing bank, food bank, GED program, Health fair, pregnancy resource center, tutoring program, etc. You name it-they were going to do it. But BIG churches must do BIG things. I went once a week to the church and we talked about what we could do. I made notes and researched statistics on the Internet. They talked about getting government grants. I never saw one person receive a piece of clothing or can of food.
Then we were back home in Evansville. New parents and everything and every relationship had changed. There's still that feeling inside me that i NEED to do something bigger than me but I had not changed or developed any of those talents we talked about. Fast forward 5 years to the doubled over crying my heart out on the floor of the Holiday Inn. I'm sure people saw me and thought I was going through some bad personal issues but really I was just asking God if this really was "it" for me. If it was that was okay but if He had something somewhere that I could do then I was willing and able to do it.
A month later I got an email that had Restore's newsletter in it. I read the newsletter and could not believe it. I went to the website and literally read every word on the site. I cried the whole time and knew that I not only wanted to be involved but I HAD to be involved. There was no way I could go on living normally and know that ministry was going on without me. Like I said before, I'm not a speaker, preacher, teacher, singer or musician but I can sort clothes, and serve food. I can give a hug and a smile to someone who's had a bad day. I can give out diapers and shampoo and know that it really did make a difference. It may not be the "calling" that some people pray for but it's my heart and my "calling".
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