On a journey with my child that has a rare neurological autosomal genetic disorder called SYNGAP.
Sunday, September 29, 2013
My Special Boy: Breaking Out of the Bad into the Good!!
My Special Boy: Breaking Out of the Bad into the Good!!: Well...you know I had to incorporate something in the title of one of my favorite shows on TV, Breaking Bad..LOL! Yes, the finale is tonig...
Breaking Out of the Bad into the Good!!
Well...you know I had to incorporate something in the title of one of my favorite shows on TV, Breaking Bad..LOL! Yes, the finale is tonight!! It is a very thought provoking show that has made me think about how people can take two different paths on how to deal with "Bad" things that happen in life. Of course, this series took it to the extremes and showed the desperation and obsession one man had to live his life like he wanted and also try and justify it by using the excuse of taking care of his family. Funny thing is, I think we have all thought about the "what if's?" and then just continued on with the life we have been dealt. I guess this is where our belief's and values come in. I whole heartedly believe that God puts us in situations either to teach us something or to prepare us for something we will have to deal with in the future. But He is where we get our strength.
This whole experience that my family and I are in with taking care of a special needs child has allowed us to meet people we otherwise would have never met, showed us that sometimes our plans aren't as great as what God has for us, and that we can live with the trails put in front of us and come out stronger that we ever thought. People say to me all the time, how do you do it? I think to myself and laugh that, "I just do!" You could too if it was put in front of you, you are forced too. Most of us think we couldn't because of the things we would so selfishly have to give up. But you just do it because you love your child. What else would I do? Lock him in a closet somewhere and throw him some food and water every now and again? He is my son and is a person that God created and has given him to us as a gift. We are charged with taking care of him.
Over the last 9 months since Beckett has been diagnosed with SYNGAP1 I have come to know many people that are going to be life long friends and am excited that we can be a support for each other. We together are working on a way to raise awareness and hoping to begin a foundation that will raise money for research and to help families like ours with medical financial needs. Of course, we are looking for a civil attorney that can donate their time to help us out with that..so if you happen know anyone..send them my way! ;)
Since my last update on Beckett, he has begun to say more words. This morning he called for his daddy to come get him and has said the phrase "Help Me!". We have him on a new medication called Intuniv that helps him with his impulsive behavior and acts as a mood stabilizer. We have had to adjust it some as at first it made him sleep 16 hours a day. He takes it one time a day. I think we now have it set to where he takes it at night before he goes to bed and helps him not to be so sleepy.
Over all, Beckett is still making slow progress, but it's progress. He still has his daily meltdowns afterschool, but we are working on those and my "art of distraction" is getting better. We still take everyday as just that, day by day.
And you know I couldn't just end my post with that. I have to share how proud I am of my oldest son for graduating from the United States Marine Corp. He has made me so proud too!
This whole experience that my family and I are in with taking care of a special needs child has allowed us to meet people we otherwise would have never met, showed us that sometimes our plans aren't as great as what God has for us, and that we can live with the trails put in front of us and come out stronger that we ever thought. People say to me all the time, how do you do it? I think to myself and laugh that, "I just do!" You could too if it was put in front of you, you are forced too. Most of us think we couldn't because of the things we would so selfishly have to give up. But you just do it because you love your child. What else would I do? Lock him in a closet somewhere and throw him some food and water every now and again? He is my son and is a person that God created and has given him to us as a gift. We are charged with taking care of him.
Over the last 9 months since Beckett has been diagnosed with SYNGAP1 I have come to know many people that are going to be life long friends and am excited that we can be a support for each other. We together are working on a way to raise awareness and hoping to begin a foundation that will raise money for research and to help families like ours with medical financial needs. Of course, we are looking for a civil attorney that can donate their time to help us out with that..so if you happen know anyone..send them my way! ;)
Since my last update on Beckett, he has begun to say more words. This morning he called for his daddy to come get him and has said the phrase "Help Me!". We have him on a new medication called Intuniv that helps him with his impulsive behavior and acts as a mood stabilizer. We have had to adjust it some as at first it made him sleep 16 hours a day. He takes it one time a day. I think we now have it set to where he takes it at night before he goes to bed and helps him not to be so sleepy.
Over all, Beckett is still making slow progress, but it's progress. He still has his daily meltdowns afterschool, but we are working on those and my "art of distraction" is getting better. We still take everyday as just that, day by day.
And you know I couldn't just end my post with that. I have to share how proud I am of my oldest son for graduating from the United States Marine Corp. He has made me so proud too!
Saturday, September 28, 2013
I do, because you just do...
..yes..life is not always greener on the other side. It's hard to remember that when you are feeling sorry for yourself and wishing it was different, how things could really be. People ask me all the time, "how do you do it?"..you just do because you have to..you could to if you had to...
Please watch...I have to remind myself everyday not to wish for something different..because it could be the kind of different that you would never think.
https://www.facebook.com/photo.php?v=10200907170114838&set=vb.351443748204703&type=2&theater
Please watch...I have to remind myself everyday not to wish for something different..because it could be the kind of different that you would never think.
https://www.facebook.com/photo.php?v=10200907170114838&set=vb.351443748204703&type=2&theater
Wednesday, September 25, 2013
Tomorrow is National Mesothelioma Awareness Day!!! Sharing for a Friend!! Please Read and Pass On To Others!
Sharing for a Friend!! Please Read and Pass On To Others!
Tomorrow is
National Mesothelioma Awareness Day!!! Please check out the link to our page that has
all the information on how to participate: http://www.mesothelioma.com/heather/awareness/
Video Story: http://www.mesothelioma.com/heather/
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