A long over due update- Living with SMA

August is SMA awareness month. Here is a picture of Lizzy and her friend Kyla.
Lizzy is my hero.
I have not posted in so long and I apologize. I have been so busy these past few years its hard to even find 15 minutes to just sit down and post.

My dad has surgery again tomorrow to remove skin cancer on his arm. Its supposed to be routine but when you are 80 years old nothing is routine. Add him to your prayers please.

Lizzy has been doing great except for her sassy mouth at times. She is the worst when I am doing her last treatment before bed. I do not know where she got the mean streak but, I do not appreciate her attitude and how she thinks she does NOT have to do treatments at night. I make her pray after she does this and ask God to help her not be so mean. Not sure what causes her sweet demure to turn into a smarty pants little stinker at night. It will stop or her mother can do her treatments. She is beautiful and a great kid the rest of the time. I guess "Welcome to preteens"

My family has been cleaning my dad's house out that had 5 generations of stuff in it. We have found a lot of cool stuff, creepy relative pics from the 1800s, dust and a lot of junk. My gosh this has been the most over whelming experience in my life. Its been just 6 of us doing this. I mean this house was packed from the basement to the attic. We cleaned this out without central air in 90 degree weather. It literally kicked my hiney. I lost 12 pounds in a week and I believe it was from all the work I did!  You find out a lot about people when it comes to hard work. The ones who show up and the ones who has better things to do. Sad, but very true. Almost done. I am amazed of the work we have done and how much has been done.

I was upset last night as I watched a child with SMA dying on facebook. It tore my heart out I could not watch it anymore. The sweet little guy earned his wings this morning around 7am. How could a mother record her baby dying? Some people are "social media' Crazy. All I could do was pray for the little guys so he did not have to suffer. Not everyone thinks like me or feels like I do . I fight for my kids and grandkids. They are gifts from God. To watch them just die and do nothing is to me a terrible sin to me.  Fly high sweet boy fly free from your suffering.

Summer is almost over and fall is sneaking up. Where did the time go?
Lizzy's mom is expecting a baby boy in November. Kolton Paul Huette will be his name! Lizzy is excited! He is SMA Free!

Thank you to my friends for keeping up on us and sorry again I have not updated sooner.

"We believe in miracles because, we live with one!"
for info about Lizzy in her earlier years  please read Lizzy's website
www.our-sma-angels.com/elizabeth

"The World Loses a Voice of Compassion, Strength and Love"- Living with Spinal Muscular Atrophy Type 1

My heart is having a hard time dealing with the passing of a fifteen year old sweet child with Spinal Muscular Atrophy that flew to heaven Jan. 13, 2015.
 I actually Hate SMA and all the lives it steals. I deal with it the best I can and keep praying that it doesnt take my Lizzy too soon like it has so many other innocent little ones. We never know when our time is up. God only knows that but.... still does not change how our hearts feel when these loved ones are taked from us so quickly.
Brianna McDanel lost her life fighting the disease that haunts my life every day. She was a strong minded child with a huge compassionate heart. This girl had very strong opinions and beliefs.  She loved helping other children with other diseases by sharing their stories. She would share posts on facebook when a child she knew was sick asking for prayers, or a death in their families and always was thinking about others while being in so much pain from her poor little body. She had been hospitalized several times the past few years and I just think her body was so warn out and could not go on anymore.
We have known her family since Lizzy was 18 mths old and her mom brought Christen and I bags of "stress food" to the hospital in Madsion,WI with a hospital stay for Lizzy. We had become friends and we had visited her family and have done family outings with them and other families. Lizzy bonded with Brianna's mom. Lizzy got her first power chair because, after Lizzy was denied for one we used Brianna's chair in a video Briannas father did for us to prove Lizzy could drive a power chair successfully. It worked.
Dealing with so many deaths to people that were so close to me is the hardest thing I have ever experienced in my life this past few years. One death after another. Mostly it was been family members but this little  lady was from my family too.... Our SMA Family.
Please say some prayers to Brianna's family to help them get through this time and to remember to celebrate her life as she was an inspiration to so many families. She will never be forgotten in our hearts.


Now, on to good thoughts here so I can quit blubbering like a fool thinking about the loss  Brianna's life  and how it will impact so many other lives with her absence here in the physical world.

Lizzy had a great Christmas. Only had one bad illness since fall. She is getting so mature at her thoughts it scares me. She is no longer a child but, a young lady with opinions and feelings. Love her to pieces.
Here are pics of her last week in the snow here. She had a blast. She insisted going out and it was 7 degrees!!
Please say prayers for MJ too !

"We believe in miracles because, we live with one! "
www.our-sma-angels.com/elizabeth