Wednesday, March 26, 2014

Do Not Let Anyone Steal your JOY - Living with Spinal Muscular Atrophy


Its been awhile since I have posted. Just seems I never have a minute to collect my thoughts these days.
Lizzy has been doing just great until today. Up several times last night with secretions. She says her throat hurts"Sigh" . Got her on Zpack right away. She is laying on the couch at this very minute on her computer playing games.   This time of year scares the bejeepers out of me. Three years ago she got sick with RSV and was life flighted to Madison. Two years ago this time of year she had the HMV virus which was worse than RSV.  So, March and April coming I get a little freaked out....  If this weather would just stay Spring I believe she would be just fine. We did take our first trip shopping last Friday in Lizzy's van to Bloomington to Target and grocery shopping. Lizzy said " It was the best day ever!!" She got to spend some of her money and gift certificate she got for Christmas. She ran all over the stores in her power chair.
She is so funny with the stuff she says. She is so opinionated!! Love it!!

Not a whole lot to tell. It seems because, of a lot going on in my life the last few years I had to drop out of the "SMA World" and just lay low for a few years. I have been trying to get back into it and they are so many new families out there I have had a hard time fitting in. Still contact me if you need some help! I just am not on the SMA boards  much anymore. I am on face book but that is about all I do besides reading my emails.

When people in your family die its so sad. Parents are the hardest.... Dealing with grief from my mother passing in Jan has been so hard. I think of her several times a day.
My stepmother was very hard to lose in October. I was so close to her too.

I just want to add do not let others get you so upset at times they steal your joy. If you can look in the mirror and you know you have done the right thing then that is all that counts. Do not worry about what others say about you. Stay around positive people and have a good heart.

I can not wait for nice weather. I want to get out there and walk with out freezing my hiney off. Lizzy wants to run around outside. Only a few nice days in the past few weeks. I am so tired of the cold weather!! I am freezing today and its 41 degrees here.
Hopefully, this summer we can take Lizzy on a few road trips. She so loves her new van.
Blessings to you all !!

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