Living with Spinal Muscular Atrophy - I am Thankful for....

Thanksgiving is in a week. Making my list here of some top favorite things I am thankful for. I am thankful for my beautiful seven year old miracle granddaughter Elizabeth,my grandson Corbyn for making me laugh because he is so darn cute, my Caitlyn, my Reed Michael,my "mouthy"  Rachael ,my "brown eyed" Robert Allan. I am thankful  for my beautiful kids, my cabby wonderful husband , my family and my wonderful friends. Oh and cheese cake..... I love cheese cake.

Its been heck of  a day so I am updating. As usual on WED (as well Monday and Friday)  Lizzy and I am home alone. The phone starts ringing this morning and its my mother. She is getting up there in years and it seems today she was feeling really bad. She was emotional and crying non-stop. She was in so much pain with her legs. She says I just can not do it anymore. Talk about a huge splash of water in my face as I was bathing Lizzy. I am like okay mom calm down. What is going on? She tells me where she is hurting and how she can not stop crying , She wants me over there now to help her. What to do here? I can not help here.  I have Lizzy here alone, no one is in town today and I have no car. Not that I would travel even across town with Lizzy alone but I would. if I had to. My mind is thinking a mile a minute.... What to do  hmmmm How about some reverse ..... Psychology...  Using my college background for a change, Okay, Mom remember when I was a new mom and got all stressed out you would say" Go wash your face go soak in the tub bath you will feel so much better!!" I said.  it works liked a charm every time, Making her feel like a mom again was the answer..... Low and behold it worked!! 

I made some calls today and I think I found an agency to help mom a few days a week with some light cooking, vacuuming. taking her to doctors appts  etc. She agreed!! Oh my.... guilt has been lifted from my heart. Thank you God. I do all Lizzy's care and I do not have time to take care if my mom too. Not that I would not want to help I just can not at this time in my life. My other 4 siblings of my mothers children live out of state or out of the country so I am now making this decision. The company I found does FBI checks on all their employees and is bonded.  Sounds like just what we need!! My dear siblings " Bite my hiney" You ;left me here alone to deal with this I am doing as I see fit. If you don't like it get you hineys home and HELP. My plate is full thank you very much. Mom is not going to around forever and saying you can not afford to come back home to help is a crock. I love you guys but hey... you have not been here. 

Lizzy has some sinus drainage  but doing great. I still have her bipap back up rate slightly up to 26. Just to get her some extra support at night.  She is doing okay though. She is a great kid. 

My life changed the day she was diagnosed. I think God put her with me so we could make a difference. I love her spunk.  I lover her determination to succeed. I love her so much it hurts sometimes. She taught me all about life and its true meaning. 

Go hug someone today. Some one you care about to let them know you care. 

Call your Mother, or your Dad.  Just tell them YOU......care about who brought you into this world. 

" We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth