Tuesday, December 6, 2011
Run for Our Sons
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Yesterdays post was the unfortunate ugly truth of Duchenne muscular dystrophy. It's 100% fatal.
While I have to face the ugly truths of this disease I will not let it bring me down. I will fight every day for a treatment or a cure. I hope to bring awareness and raise money to help fight and help find a cure. I will not give up hope.
I have registered to run in the Little Rock Marathon this coming March to support "Run for Our Sons". I am running for Austin and all of the other kids affected by this horrible disease. Of course I am only running the 10k this time since I am nowhere near being able to run a full marathon but I hope to get there one day. I have to do all I can for this little guy.
I will be setting up a donations page soon and I will post the link on here. I hope you all will consider donating to the fight against Duchenne Muscular Dystrophy. All proceeds go to Parent Project Muscular Dystrophy. They fund research and help kids travel to clinical trials. They help families afford wheel chairs and do many other wonderful things. Check out their website sometime. There is a lot of good information. http://www.parentprojectmd.org
I can't wait to cross that finish line and hug my little guy and know I'm making a difference for him.
Monday, December 5, 2011
Life...and Death
The Parent Project Muscular Dystrophy website describes duchenne like this:
"Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their twenties"
I try not to spend too much time thinking about the bad things that will be coming our way. There is so much good to focus on right now. But the truth is I have to be prepared..and I can't be prepared if I don't do my research and try to come to terms with the hand we've been dealt.
As a parent you never consider your child dying before you. We are all supposed to live long happy lives right? We grow older have children, they get older and we have grandchildren, and then some point after a long happy life we pass on and leave our children behind to continue the process. But how do you cope when that isn't the way things go? As a parent how can you continue on without your child?? I can't even imagine it.
We don't have all the answers about Austin's diagnosis yet. They say we will have to watch him over the next few years and see how it progresses. He is getting to the age where things will start to go downhill. That's scary! 9 years old is the typical age. That's only 1 1/2 years from now.
Aside from a short life I think about all the things he may have to miss out on. Playing sports, falling in love, getting married, having children, going to college, driving a car. I know these seem like trivial things but imagine a life without them...
I just want to make sure that he always feels like he has lived the best life possible even if he has to miss out on certain things. I don't want to regret anything. I want to live life to fullest while we are here on this earth. I want to love with my whole heart and experience the world the way God intended. I want to pass that on to Austin. I want to experience new things with him and take adventures while we can. I want to make amazing memories that we can hold on to forever.
"Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their twenties"
I try not to spend too much time thinking about the bad things that will be coming our way. There is so much good to focus on right now. But the truth is I have to be prepared..and I can't be prepared if I don't do my research and try to come to terms with the hand we've been dealt.
As a parent you never consider your child dying before you. We are all supposed to live long happy lives right? We grow older have children, they get older and we have grandchildren, and then some point after a long happy life we pass on and leave our children behind to continue the process. But how do you cope when that isn't the way things go? As a parent how can you continue on without your child?? I can't even imagine it.
We don't have all the answers about Austin's diagnosis yet. They say we will have to watch him over the next few years and see how it progresses. He is getting to the age where things will start to go downhill. That's scary! 9 years old is the typical age. That's only 1 1/2 years from now.
Aside from a short life I think about all the things he may have to miss out on. Playing sports, falling in love, getting married, having children, going to college, driving a car. I know these seem like trivial things but imagine a life without them...
I just want to make sure that he always feels like he has lived the best life possible even if he has to miss out on certain things. I don't want to regret anything. I want to live life to fullest while we are here on this earth. I want to love with my whole heart and experience the world the way God intended. I want to pass that on to Austin. I want to experience new things with him and take adventures while we can. I want to make amazing memories that we can hold on to forever.
Thursday, December 1, 2011
A Mom Fail
I have a cute story to share today.
Austin pulled his tooth out at school the other day and didn't tell me about it until about 8pm at night. He took it out of his backpack right before bed and wanted to put it under his pillow. First thing I thought when he told me was crap! I don't have any cash. So I tried to make him forget to put it under his pillow but that wasn't happening. So he went to sleep with the tooth under his pillow and I wracked my brain trying to figure out what to do. I searched for change but didn't come up with anything. I briefly considered doing nothing and telling him the tooth fairy was too busy that night and might come the next, but the tooth fairy is supposed to be magic and can do anything like Santa right?
And at the last minute I came up with an idea. I had a Ring Pop stashed away in my closet and put that under his pillow. He thought it was the greatest thing ever. Even better than money! So I guess it wasn't a total fail, but shouldn't to tooth fairy want to take care of your teeth and not harm them with candy? =)
Austin pulled his tooth out at school the other day and didn't tell me about it until about 8pm at night. He took it out of his backpack right before bed and wanted to put it under his pillow. First thing I thought when he told me was crap! I don't have any cash. So I tried to make him forget to put it under his pillow but that wasn't happening. So he went to sleep with the tooth under his pillow and I wracked my brain trying to figure out what to do. I searched for change but didn't come up with anything. I briefly considered doing nothing and telling him the tooth fairy was too busy that night and might come the next, but the tooth fairy is supposed to be magic and can do anything like Santa right?
And at the last minute I came up with an idea. I had a Ring Pop stashed away in my closet and put that under his pillow. He thought it was the greatest thing ever. Even better than money! So I guess it wasn't a total fail, but shouldn't to tooth fairy want to take care of your teeth and not harm them with candy? =)
Tuesday, November 29, 2011
Catching Up
We've been pretty busy the last two weeks and I haven't had a chance to post. So today I am going to do a little update on what we have been up to...in pictures
We took Austin to his first Razorback Basketball game. He had a blast!
Jonathan and I got to go to a Razorback Football game and they won!!! It was great I hope to go to many more next year.
We put Christmas lights up on my house, made a foam gingerbread house and put the tree up and decorated it.
Austin's school has an annual Thanksgiving lunch for the students and families. Jonathan and I went and had lunch with Austin. It was really nice. After the Thanksgiving lunch Austin went to UCA with Kendyl and Stephen and got a tour of the campus and was able to watch football practice. He said he had a great time and wants to go to college there.
We spent Thanksgiving at Jonathan's mom's house. It was very nice. We ate wonderful food and played games.
We spent the day after Thanksgiving at Jonathan's dad's house and ate leftovers and watched the Razorback game. Unfortunately they lost to LSU.
We have just really been enjoying some nice family time. We had 5 days off of school and work which was a very welcome break for us all. I hope to update more often. I need and iPhone 4s and it would be so much easier! =)
We took Austin to his first Razorback Basketball game. He had a blast!
Calling the Hogs
What!?!
We put Christmas lights up on my house, made a foam gingerbread house and put the tree up and decorated it.
Austin's school has an annual Thanksgiving lunch for the students and families. Jonathan and I went and had lunch with Austin. It was really nice. After the Thanksgiving lunch Austin went to UCA with Kendyl and Stephen and got a tour of the campus and was able to watch football practice. He said he had a great time and wants to go to college there.
We spent Thanksgiving at Jonathan's mom's house. It was very nice. We ate wonderful food and played games.
He would not take a nice picture =)
Showing me what he wants for Christmas
Playing at Malika's
We spent the day after Thanksgiving at Jonathan's dad's house and ate leftovers and watched the Razorback game. Unfortunately they lost to LSU.
We have just really been enjoying some nice family time. We had 5 days off of school and work which was a very welcome break for us all. I hope to update more often. I need and iPhone 4s and it would be so much easier! =)
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