Celebration of Life for an Inspiring Woman- Living with Spinal Muscular Atrophy

A Celebration of Life for a woman who really influenced my life was today Oct. 31. My stepmother Rosalind Reed lost her life to Cancer on October 25,2013. She was just 70 years young. I do not like calling her my 'stepmother" She was more like a mother to me. She helped me so much figuring out difficult situations my whole adult life.  I feel like I lost one of my best friends. Before, Lizzy was diagnosed we did so much together for so many years. We went to auctions when I was a kid. We had fabulous holiday gatherings with her and my dad until her passing. She took my us with her everywhere with her for many years. Horse shows, craft shows and so many different places. She just really enjoyed life!! She was very much loved by all that met her.
Please, say a few prayers for our family and mainly my dad to get through the days ahead with out her.
Her illness and diagnosis was so quick. I have cried for over three weeks trying to be able to accept that is was her time soon. I think it was one hardest things I ever had to handle. Part of my heart died with her I think. She was a wonderful teacher.mentor and a great friend. Its so very sad.  I just thank God for having her in my life.
She thought I was not happy because I have been home all the time taking care of Lizzy the past 10 years. In truth ,I told her" this is what God had planned for my life."  I accept it and it okay. I am fine.  The people I have met in The SMA world are some of the kindest sweetest people that I have ever met. God picked me to help take care of Lizzy and now my husband too. I am very good at what I do  I am not unhappy with my life at all.
Roz will not be physically in this world  with us but, I know she will be watching over me and my family. We will be together some day again. I know we will. Thank you Roz for being in my life. I will cherish the memories forever.

So what is the Plan? Living with Spinal Muscular Atrophy Type 1

Its been a very unusual last few weeks.
Lizzy was 10 on Sept.29 and had a great birthday party with her cousin Robby at my daughter Dana's house on Sept 28,2013. The date was my sister's birthday whom lives in Florida. Lizzy had a great party . She wanted all kinds of candy and that is what she got!! Thank you all that sent her presents!!

 On Tuesday evening a very special woman in my life had an accident in the bathroom at her home and fell. Next thing ,we knew she is on her way to the ER in Bloomington,IL On, Wed we get the news that she has melanoma all through her body and some in her brain. It was a day I thought my heart would break. My stepmother has been one of my guiding forces to be the person,  I am today. She kept me strong when I thought I could not go on and always helped me figure things out. My childhood was not always easy because my mom was sick a lot. I needed a strong women in my life. My Aunt Ginny was one and the other was my stepmother Rosalind Reed. This woman was always there for me through the rough times and the good. She was at all the kids/grandkids parties and always was a good grandma. The cancer doctor came in and told us "she may have a few months". Then, she had an MRI results where back on Thursday and the doctor said " Just a matter of days" Can you imagine going into the hospital for a fall and find out your are going to die in a matter of days? She thought she would have about 10 more years at least. She told me "I was her favorite." I just can not grasp a hold of this..... what is my life going to be like with out her? She is the matriarch of our family. I am having a hard time with this. She is home now on Hospice. She is such a strong lady. Now, it will have to be  just me now being the guiding force for our family. Am I ready to do this?
My nephew told the nurse" I do not believe in God.... he is taking my grandma away" The nurse turns to him and says" God always has a plan. There is Good with the Bad and just maybe, with out your grandma you will grow up and be responsible like you should be at age 20." Mighty powerful words but true... Roz always bailed him out of trouble and spoiled him rotten. He was her "Baby Boy". I think my nephew just better start believing quick in God. He might have a rough road a head if he doesn't.
Tears have been dripping off my face for three days and I can not seem to pull myself together because, my heart hurts so much.
Another bitter sweet thing happened on Thursday. Lizzy's dad signed all his rights over. How could anyone give up on a child like he did? Pure selfishness. He has not been there for or has he provided support for her. He was a "Show daddy" only there on birthdays and Christmas. He did buy her gifts for those times but he did not for the 10th birthday. I hurt for Lizzy but... I feel we can quit worrying. he can not cause us any more pain or drama. God has a plan for us and I would like to know what it is but ,I guess I will wait until future to see what good things are instore for us.
I will miss my stepmother so much and I pray my dad will be okay with out her. I do not think I have been through so much heart ache in one week as, I have been this week. I will cherish her last days with us.

Lizzy has been doing great. Got all her test results back from Madison and her diet is PERFECT according to the test results. Yeah!!!

Please, love your family every day like it your last. You never know when you are going to lose some-one dear. I just pray God will get me through to the next chapter in my life and helps me deal with the pain I am feeling. I know every one has a time to die but to lose someone when they just turned 70 years old a few weeks ago that is like a mother to you hurts so badly. She was only 15 years older than me.
I pray God takes her with no pain. I love this woman with all my heart. She has made a bucket list of things she has to get done before she dies. That is so sad.
Please, add prayers for my family in the weeks a head to be able to cope losing such a wonderful part of our lives.
"We believe in miracles because, we live with one!"

www.our-sma-angels.com/elizabeth