Have you ever felt so alone? I not only feel alone, I feel lost. I feel lost for my girls, alone in our battles and scared out of our minds for our future. We are now being told that our daughters who battle cystic fibrosis may have celiacs disease. My Pyper has cf, ? celiacs, type 1 diabetes and asthma and Trinity has cf, feeding tube, ? Celiacs disease. It is just not fair. My girls are so happy, so loving, so full of life and their life should be about living and having fun and playing. My girls don't get to do that. We eat at chic fil a today and we eat outside b/c girls have a nasty cough. Other kids were playing on the slide and toys and I had to keep saying no to them b/c germs and germs, and more germs. This sucks so bad. My babies deserve to be normal. They deserve to have fun... They deserve to play like all the other kids get to.
Today at the doctor, the doctor put them both on augmentin extra strength, septra, prednisone, and xopenex b/c their coughs are so bad and because the wheezing. They are to be out of school until next wednesday. We have only been in school for a little over a month and they have already missed their limit on absences. This sucks so bad. They want to go to school so bad. They want to be normal, they want to have fun. They just want to be kids. WHY, WHY, WHY??????????
Someone tell me why our babies deserve this. I know god only gives his special babies to people who can handle it. I get it b/c I know I can handle it. I lost it today. I laughed, I cried, I just wanted to scream but couldnt because our girls were in the car with us. We went to a grocery store today that has a lot of gluten free stuff and I wanted to run. Run and hide because i am so lost. I don't even know were to begin. I don't want this for them. This is not right. It is suppose to be me. It is suppose to be me who has all this. Not my babies. Tell me how we are suppose to make it on one income and live. My poor husband never looks mad, he never looks lost, he never looks scared for us. He stays strong for us. I was looking at prices for gluten free stuff. OMG is all I can say. We already spend over 200 dollars a week on regular groceries, and now possible this. WOW!!!!! Whatever I need to sale. Then we will do it.
I talked with greg today about possible home schooling the girls. The longer I can keep them healthy, the longer my girls can live and dream and see the future, the future with a cure... My mother in law told my husband no to home schooling, but I need to start looking into working from home. OK, do people not think i have done that. Yes I need to work but I can't. I need to take care of my girls. I need to make sure they have stabililty in their lives, and they have someone here who will fight for them and love on them and make them better. That is me.... Nobody else can do what I do. No one else knows how to do it but my husband who has to work and my trins. She is my wingman. She is my support system.
We don't need peoples opinions. We need you to listen and keep your mouth shut. Nobody walks in our shoes, no one knows how we feel, no one knows what it feels like to worry about losing your kids... well some people do but not a lot. We want the best for them. We want to watch them grow... I say that everytime in my blogs but I want to see my babies turn into adults. I WANT THAT!!!!!!
I was talking to Pyper today about one day when they cure diabetes, me and her are going to go to krispy kreme and eat dounuts all day. She said a cure mommy. My babies don't wish for toys, they wish to be cured.. They want to live... I am just so sad. So heartbroken. This is not fair.... I just want my babies healthy and cured... In my life time, I want to see a cure... A cure for Cystic Fibrosis, Diabetes, and celiacs disease... What do you wish for.. A car, a house, a new outfit. Get your priorities straight people, b/c your life can change at the drop of a hat.. My wish is for my babies to out live me. If there is something in me that will cure my babies, take me.. Take me right now and give it to them.
Genetically challenged,
Martie
