Emily was born with intestinal blockage - which apparently is a big symptom of CF. They immediately did blood tests when she was born and on Jan 23, 2006 we were given the most devastating news of our lives. Emily had Cystic Fibrosis. For this to occur both Jonathan and myself had to be carriers which was so shocking because there was no family history of CF.
If you are anything like myself you might ask.. what is CF? Here is an excerpt from the Cystic Fibrosis Foundation.
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
There is NO CURE for this horrible disease. The predicted median age of survival for a person with CF is more than 37 years. Sure that sounds great - the age of survivial has grown and probably will each year but knowing that possibility of her not living to see her children grow up if she is even able to have any just kills me. As a parent we want to be able to take care of our children and make everything OK but then something like this happens and there is nothing I can do to make it all better.
One might think after 2 1/2 years I'd be more accepting of this disease but actually I'm not. Maybe I've been in my own little state of denial and have pushed my feelings deep inside but it does cause me to have so many questions that there will never be answers for. I still want to know WHY. I can't help but to blame myself for all that she has been through and I'm not sure how to get over that blame. It has caused me to question God - why does he allow things like this to happen. One of the things that just really burns me is something we saw in the NICU. Here we are good parents who did everything they could to make sure we had a healthy baby and then were faced with this disease. Right next to use was a baby whose mother had been smoking, drinking and on drugs (according to the nurse this was not her first child in the NICU for the same reason). Ya know what... that baby wasn't there very long before he got to go home. As the days, weeks and months passed us by we saw many babies go home and it just made me SO bitter - it just wasn't fair.
I do realize other parents are in the same situation as me and I wonder how in the world they get thru it. People tell me all the time how strong we are but ya know what, I'm not. I dont let anyone see how often I'm upset over all of this and how scared I get every time Emily gets sick.
I'm so thankful that Emily is doing so good. It's a daily struggle though. She has lots of meds and treatments she has to do and getting her to maintain her weight and even gain any is so hard. So many people were there for us when she was born and in the NICU but now that we are home dealing with daily life, where are all of those people? I feel like we have just been forgotten now that she is home and "looks" healthy. I'm tired of being asked if she will grow out of this or if it will go away. No she wont - she will have this for her entire life even though she may not look like a sick little child.
I don't mean for this to be a pity post at all - I just needed to get some things off my chest and maybe this post is more for me than anyone else. I do have one plea though. If you find that you are in a position to give to a charity, please consider giving to the Cystic Fibrosis Foundation. While there are many other childhood diseases out there, a lot of money goes to research for those and there ARE cures for them. Not for CF - you don't get phone calls or see donation cans all around like you do for other things. So when I politely decline to give money to these other causes, please know that it's not because I dont care... it's because I choose to give my support to a cause that could help save my daughter.
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