And It's About Time There Was Some Support For Cushing's!
Carrie's life began with her fighting for her life. She was born with group b strep that developed into sepsis. She was airlifted to Duke hospital within a few hours of her birth. The only way to save Carrie was to place her on this new machine called ECMO. It is a heart lung bypass machine used as a last resort to save a very sick baby. It basically functined as her lungs and hear. Her chest didn't rise when she should be breathing. A very unforgetable image. While on ECMO she developed 2 grade 4 bleeds in her brain. 4 is the the largest you can have. The neurosurgeon said he had never seen a live baby with bleeds like this. She had surgery on my 25th birthday to drain the bleeds. I was all alone that day. My husband didn;t want to be there, go figure. I was able to hold Carrie for the first time and the nurses took a picture of us and sang happy birthday to me. We all knew this surgery was very dangerous and she could die. Carrie was still a very sick girl and very weak for surgery but it had to be done.
That is Carrie's beginning in this world.
Carrie was then diagnosed with a mild to moderate hearing loss when she was 2. That is when my battle with the school system began. Carrie was placed in a new program called cueing. She didn't do well. Her vocabulary was not increasing and the teachers thought it was because I wasn't working with her at home, but I was.
When Carrie was 7 years old we were finally told she had severe audtiory processing disorder which means it is very difficult for Carrie to process spoken language.
We turned to the school for the deaf to try using sign language to help support her. She did great with signing and it really made a diffence it helping her to communicate and to understand others. And she was able to make friends for the first time. Then they closed the school. The parents and staff fought very hard to stop the state from closing the school but we were not heard and the school was closed. Now all the children that were deaf had only 2 schoolc in North Carolina to attend and for many that was far away from. Most of the children live on campus then go home on the weekends. You would be amazed at how many of these parents knew very little or absolutely no sign language. These poor kids went home into a world of silence. Just another example as how children with special needs or illnesses scare people away cause it will cause them to get involved in something that takes alot of hard work and consitence. Ok, I am off the soap box now.
She was in public school for kindergarden. I was awful. I made her teacher cry. I saw this teacher grab a boy by the arm and was pulling him. Now this was a special needs child. She was angry and I was very disturbed to see that. And then when we found out she was going to be Carrie's teacher I was beyond upset. We tried desperately to have her transfered to a school where thre was a great teacher working with children like Carrie. We even went to observe her class and just feel inlove with this teacher.
Well as always the school system put up a block. We had a meeting with the principal, school councler, a woman that placed child with hearing impairments in the school system and this teacher I despised.
I told the panel of "judges" why I did not like this teacher not trusted her. Well this made the teacher cry. But you know what, I didn't care. No one should ever grab a child that way especially a special needs child.
Well jimmy and I said we would give it a try. I planned on being there alot and I was to be the grade parent.
And you know what, this teacher had her mother come to school with her cause she was afraid that when I brought Carrie in I would give her a few choice words and warnings. How silly was that?
Well once Carrie turned 8 she starting showing signs of anxiety. She was very uncomftable around childern. Some of the children had been mean to her cause she couldn't communicate on their level. And when I started seeing how much this was affecting I pulled her out of school and began to homeschool her. Homeschool has been the best for her.
Since she was 8 I feel without a doub that cushings had already began to change her. Her face started becoming round at the age of 12 the same tme she started her period. Those trrible deep purple and red stretch marks began to spread all over her body.
SO now we are here with a diagnoses and awaiting surgery. And I wonder how much of Carrie will we get back. I pray that there will be a dramatic change in her mood and her pain. She is so very depressed. She knows she has changed and she can't stop it. People say how brave she is. But down deep she is very afraid. We all are. I don't know if it is just bravery but maybe a desperate fight to live.
Now, let me tell you about the Carrie she will be again.
She is a funny girl. Loves to scare people. We use to go to the firestaion to see her dad and she would play hife and seek with my husbands captain. This great man would even get on his knees, crawl around just to surprise her. She loved them all very much. Now she hates to go there, she is just so sad and embarased by her size.
Carrie has 2 cats. Baxter and Saffron. These are her babies and let me tell ya they LOVE her. I think they will play a very important part in helping Carrie with her recovery after surgery.
As some of you may already know Carrie LOVES Wolves. I mean big time. That is why she changed her name to Carrie Wolf Anne. She has tons of book,tapes,dvd's,t-shirts,paintings,hat and just recently she got a book that had a cd in it that plays only the sounds of wolves. She cried when she first heard it. This girl is a very tender hearted girl. Unfortunately cares love for wolves has lead her into loving werewolves which I don't really like. She has 2 werewolf masks hange on her bed. My husband made her bed and her sisters. They are what you would callrustic. Made out of trees and branches. And over the branches that stretch out to the middle of the ceiling hangs this beautiful long scarf that completely drapes across the trees and touches the floors. So the surtains can be pulled out to theier fullest and the girls have a beautiful little peaceful safe haven. And for an extrea touch we painted wolf foot prints on the floor going towards Carrie's bed. She loves it. Carrie has also gotten many gifts and cards from our firefighting family. They have been very supportive. And you know the sad thing is her aunts and uncles have not come to see her nor sent a card. One of these aunts and uncles are going on a missionary trip to Germany next month. Yet they can't make a trip to come see Carrie. Carrie has had 11 brain surgeries due to her hydrocephalus and I can count on one hand the times she was visted. That is shameful. I think some Christians get so caught up on their works that they ignore the family that has gifted to them. I have a bitter taste for those people and unfortunately my husbands family are all that way. My family is messed up. My dad was an alchloic and my mother slept all the time due to her constant taking of valuim. Our family never really was a family. We are all distant and always have been.
Carrie's only friend are her cousins. She has cried cause she wants to see them so bad. I tell the kids to come see her cause she is really down and seeing them would make her so happy. And my niece who calls me her"second mama" doesn't even come to see her. Kristin spent alot of time with us and she and I did many things that a mother and daughter would do.
Carrie and I were out for a drive a couple of weeks ago listening to music. My neice got married a year ago and we went by to vist. They weren't there. SO I left a not to say hello and to tell Kritin that this has beedn the worst week for Carrie and to please pray for her. And I am so hurt that Kristin didn't feel it was important to come and see Carrie. How can people live with themselves when they ignore a child or anyone that is ill?
Well, I have special plans for Carrie once she is better. There is a wolf rescue group here in NC. I have written them and sent a picture of Carrie with one of her wolf t-shirts on.
I asked them how we can be apart of the care for the wolves. We could get a motel and spend a weekend with the group and help take care of the wolves. Carrie would love this so much and so will I. To see my baby happy again means everything in the world to me.
Waiting to hear from Dr's office as to when we are going to see the neurosurgeon and speak to the endo dr. at the hospital so they will be famaliar with Carrie and care for her properly after surgery til we get home and her endo can take over.
Carrie is sleeping alot due to risperdal and xanax to kep her calm. She staggers everywhere cause she is so sedated. But this is the only way we can protect her from herself. She told me this week she wanted to sot herself in the head and go to heaven and ask God to make her a wolf. She has hurt herself before not to mention she has beaten me up once. I hate to drug her so much but her cortisol is just so high.
So we wait. Carrie will come back to us and I feel she will be better than before. Even as far back from birth. I think she will be a new and different girl. We are so excited.
So that is Carrie and her life. Full of alot of suffering and lonliness but also many times of laughter and tender moments.
She is loved dearly. And will one day be more than she ever thought she could be. That is a promise.