Well if I am going to do this I better post the good, bad and funny etc.
Daddy took the girls fishing this evening by himself. Off to the lake they went and into the canoe to hopefully catch some fish. Well fish they did not catch but some stowaways they found. As they are floating along on the lake out come about 500 spider babies. Now if you know us you know that this is unacceptable for us girls. They are now floating along the lake and squishing the spiders with anything they can find. Brave Daddy found a dock to stop at where they had dinner while he squished the spiders the best he could. After daddy saved the day they got back in the boat to head home. When home our brave daddy took the boat apart to find 4 spider nests ready to hatch. YIKES!!!!!!!!! Glad I had stayed home to grocery shop. ;o) The girls were apparently super brave as well and I am so proud of them. When I asked Frankie if she would like to go out in the boat again, she said " Yes but without the spiders" ;o) Ah adventures. Aren't they grand..........
Friday, August 13, 2010
Yeah!!!!!!
Well today is the day I thought I would try this out. I am being told that this is a good outlet for things that may be going on in our lives that we cannot control. Maybe if I get it out I can be less crabby. ;o) We'll see......
So John got home from work early today and has taken the kids out in the boat. They were very excited and it was nice to see them having fun with their dad. It is also enabling me to have some time to myself. Also a good thing.
I am a momma of 2 girls one of which has Cystic Fibrosis. Cystic Fibrosis is a genetic disease that affects thousands of people and I can honestly say that it sucks. When we were kids and thinking about how great our lives were going to be when we grew up I can definately tell you that having a child with a disease was not involved in our thoughts. We were going to grow up and get married and have healthy kids and life was going to be great. Well ha ha jokes on us. I did get married and I did have kids but unfortunately it has been a little harder than I had planned. We have been struggling financially since we have been together. We had our first child and boy were we excited. Then she got here and the struggles began. She had feeding issues from the get go and we spent the first 5 years of her life always wondering what was wrong. She was pooping about 8 times a day and at age 2 developed clubbing of the fingers. All in all she was fairly healthy but I always had that nagging feeling that something was wrong. Well I will never forget the day of her 5th birthday party when the diagnosing finally began. She had developed red spots on her skin that didn't seem to bother her and would go away in about 3 days but then they would come back. Well for her 5th birthday they came back as purple spots that were very painful for her and her foot had swelled so she could not even put on a shoe. We ended up down at Seattle Children's ER and the tests began. They asked us if we had ever been tested for Cystic Fibrosis and I said no. No one in our family was sick and no one in our anscestry had ever had this so why would we? They scheduled us for the test and all the while our pedriatrition was sure that this was not what was going on. Boy was she wrong. I will never forget the day that she called us to give us the results of the test. Frankie had CF. At the time to me CF was a death wish and I will never forget the feeling or the phone call to my husband about how our child was going to die. These are words that you just never think you will have to say about your child. They are your child and they are supposed to outlive you and have husbands and children of their own right????? Well in some cases of kids with CF this is just not the case. We are hopeful for her future but you just never know. These are the things I have to think about everyday as I have to give Frankie her at home pharmacy of medications just to keep her healthy. She has to take medicines everytime she eats and has to spend 45-60 minutes 2 times a day on nebulizers and a vest machine in the hopes that she will stay healthy. She has to fight to gain weight and has to cough more than a child should have to. She has had to stay in the hospital twice to fight infections and endure things that no child should have to endure. Now I should specify that believe it or not we are actually lucky ones. There are children out there that have endured way more with this disease than we have and some of those families have had to endure the death of their child and I can not even imagine what they went and are going through. All I can do is try my best to keep her healthy and send thoughts and prayers to other families that are also dealing with this horrible disease for which there is no cure. One day though we hope to make CF stand for Cure Found. I will continue to fight for my daughter whom I love with all my heart.
So John got home from work early today and has taken the kids out in the boat. They were very excited and it was nice to see them having fun with their dad. It is also enabling me to have some time to myself. Also a good thing.
I am a momma of 2 girls one of which has Cystic Fibrosis. Cystic Fibrosis is a genetic disease that affects thousands of people and I can honestly say that it sucks. When we were kids and thinking about how great our lives were going to be when we grew up I can definately tell you that having a child with a disease was not involved in our thoughts. We were going to grow up and get married and have healthy kids and life was going to be great. Well ha ha jokes on us. I did get married and I did have kids but unfortunately it has been a little harder than I had planned. We have been struggling financially since we have been together. We had our first child and boy were we excited. Then she got here and the struggles began. She had feeding issues from the get go and we spent the first 5 years of her life always wondering what was wrong. She was pooping about 8 times a day and at age 2 developed clubbing of the fingers. All in all she was fairly healthy but I always had that nagging feeling that something was wrong. Well I will never forget the day of her 5th birthday party when the diagnosing finally began. She had developed red spots on her skin that didn't seem to bother her and would go away in about 3 days but then they would come back. Well for her 5th birthday they came back as purple spots that were very painful for her and her foot had swelled so she could not even put on a shoe. We ended up down at Seattle Children's ER and the tests began. They asked us if we had ever been tested for Cystic Fibrosis and I said no. No one in our family was sick and no one in our anscestry had ever had this so why would we? They scheduled us for the test and all the while our pedriatrition was sure that this was not what was going on. Boy was she wrong. I will never forget the day that she called us to give us the results of the test. Frankie had CF. At the time to me CF was a death wish and I will never forget the feeling or the phone call to my husband about how our child was going to die. These are words that you just never think you will have to say about your child. They are your child and they are supposed to outlive you and have husbands and children of their own right????? Well in some cases of kids with CF this is just not the case. We are hopeful for her future but you just never know. These are the things I have to think about everyday as I have to give Frankie her at home pharmacy of medications just to keep her healthy. She has to take medicines everytime she eats and has to spend 45-60 minutes 2 times a day on nebulizers and a vest machine in the hopes that she will stay healthy. She has to fight to gain weight and has to cough more than a child should have to. She has had to stay in the hospital twice to fight infections and endure things that no child should have to endure. Now I should specify that believe it or not we are actually lucky ones. There are children out there that have endured way more with this disease than we have and some of those families have had to endure the death of their child and I can not even imagine what they went and are going through. All I can do is try my best to keep her healthy and send thoughts and prayers to other families that are also dealing with this horrible disease for which there is no cure. One day though we hope to make CF stand for Cure Found. I will continue to fight for my daughter whom I love with all my heart.
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