All about Lizzy's life and my life as Lizzy's caregiver. Lizzy has Spinal Muscular Atrophy Type 1 and is a miracle! She has NEVER been able to stand, walk or sit(with out assistance). She is such an amazing child with the determination to over come many of her battles with this terrible disease. She is a happy child and is always smiling.
Sunday, August 8, 2010
Living with Spinal Muscular Atrophy- DEEP DARK HOLES
I hope you did not read my last post. I was kind of negative and DELETED it. Some-times you have to just vent and vent away I did. Forgive me as I was in that "DEEP Dark hole " kind of attitude and it hit me all at once. I preach against this kind of attitude. I am glad I was not around Elizabeth today when I was this upset.
I do though see the need for me being with her 24/7 as today her food ran out food during her feeding and the pump did not beep and she was not a happy camper when I took back over. She said "Nina where did you go? I needed you." She was down stairs with her Mom and Dad. Did they see her pump run out. Nope they did not. They do not give her the care I do. I felt so bad. I was just so tired of the BS, They can run off as they please and leave me home alone all day into the evening. A person needs to have alone time every day to keep the sanity intact.
I am fine now. I prayed for " Divine Intervention" and I got it!!
Lizzy is my light and pulled me right back up
August is SMA Awareness Month
Lizzy praying for the babies and children that lost their lives with SMA.
Help raise awareness for Spinal Muscular Atrophy & to honor & remember So Many Angels. On Wednesday 8-11-10, 8:30 PM, at the Dublin Miracle League Field/Playground the
Mayor of Dublin will proclaim August SMA Awareness Month. We will have a
balloon release and candlelighting... -if you can't make it please light a candle, say a prayer or release a balloon where ever you are!
" We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
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2 comments:
I read the last post, and ya know what I feel the same way some times, No worries we all still love you, everyone has to vent! Great picture of Lizzy, she is getting so big, we just love her and all of you!!!!
I do not like feeling that way. been lots of drama here recently.
I deleted it because I should not of posted it. Just was having a rough day and things just some-times get the best of you!!
Thanks!!
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