Monday, June 16, 2014

Just a Blink and Time has Past - Living with Spinal Muscular Atrophy




It been awhile since my last update. We have just been so busy!!
Lizzy is doing well. We are great. Enjoying the summer. It took so long for summer to get here we are enjoying it while its around.. Took a few trips so far. One to Kentucky and one to see our friends the Poole's in Madison.
Lizzy was supposed to start summer school last week but... sick kids at school with running noses has kept us home.I believe we have changed our mind about sending her now. Why is it some parents can not keep their kids home when they are sick? Its not fair to kids like Lizzy. Just makes me so angry. Well, all we can do is not send her and keep her safe.  I always kept my kids home when they were sick.  She was so excited to go then. boom..... sick kids at school right off the bat. That is okay she can sleep late every day!! She loves that!! Typical tween!! LOL


Lizzy has been in her power chair almost daily for 6-8 hours. Having the Handicapped accessible van has so  much helped her quality of life so much! Paul and I take her to Wal-mart grocery shopping!! Its great!! Her personality is very honest and speaks her mind!! She still says" She loves her life!!" She has been through so much this past year with her dad signing off his rights and jumping out of her life. She has handled this extremely well and her anxiety level is so much better with him not in our lives. Its amazing to watch her and listen to what she says! She pays attention to EVERYTHING!!
She goes to church almost every Sunday too now!! We have missed a few but,we go as often as we can.

We have had a busy summer so far. We went to Kentucky for my niece Alli's graduation. She graduated with honors and got a full scholarship to Berea. We are so proud of her.
My mom passed  in January and it was so hard on Alli.    It was hard on all of us but, Alli was her "Shining Star".  We felt we needed to be there for my sister and her family. It was a fantastic time!! I was good!! I did not shed but, a few tears!! My sister Mindy well , she cried all week-end!! I understand how she feels.  If I would of not had help after my mother passed from our pastor Rev. Ray I do not think I would make it through each day since my past with out crying. He was a great help to me with some situations that occurred after Mom passed away.
We got to see Roman , Susie and Ali while we were in Kentucky!! They all look so great!!

"Enhance the relationships you who do have and do not dwell on the relationships you can not change."  You can offer forgiveness but, you can not make some one care for you or love you if its not in them to do so. I have learned a lot the past two years. I have lost three important people in my life. Two very important people I lost in less than three month almost put me over the edge. I was so close to just having a mental breakdown and doing a withdraw from society. Lizzy kept me from doing so. She is a very wise smart child. She hated seeing me cry and she would talk to me about all sorts of things do get me from crying it worked. Losing ones mother is so hard but losing two mothers in unbearable in such a short time.With Faith you can get through it. I miss my bother Rory and sister Rita so bad at times it hurts. I think losing our mom brought us closer together as siblings but now..... none of them are here.

My sister Mindy and I get a long better than we ever have. I try to remain positive most of the time. I had to get my soul straighten out. I had to forgive, not dwell on things I could not change and just not get so upset so easy. I am "Good" .
My husband Paul turns 60 on Friday!! OMG..... We have been together 40 years! We started dating when I was 15! Its crazy. Looking in the mirror you do not see how you age until you look at pictures! OMG. Where did the time go?  We blinked and its gone!!! Now, I am old and he is old... We have had some hard times and many good times. We have four beautiful daughters , six grandchildren and one great grandchild. We are GREAT GRANDPARENTS!!
Its been a roller coaster of emotions the past 10 years. I think this has been the most challenging part of our lives and learning how to survive some of the roughest times we have faced.  We flew California for Lizzy several times, had to deal with my husband losing his job of over 30 years, we had to deal with his accident. had to deal with him not being able to work , almost losing our house,  been to many states and meeting some amazing people. We learned who we could always count on and those who just blew us off. We learned what it was like to lose  a few of those dearest to your heart. We had to make decisions we thought we would never have to make. The good thing is we survived and we are better people for it! We learned how not to sweat the small stuff and every day is a new day!! I had to learn to give it all to God.

Father's Day was good but, my Dad did not show up. That part upset me but, it was his choice not to come. He is still overloaded with grief. Just wish he would let me into his life but, circumstances I will not go into what has kept me from much contact with him. Sad..  I had to move on and not let it upset me anymore. Its the choices he has made in his life with the people he choice to make those decisions.
 I hope you all have a great summer!


Paul his a 60th birthday party this coming Saturday. We got a hold of some of his old friends!! Its will be a great celebration!!

Please put Lizzy's BFF Sophia Salus in your prayers. She has been in Madison in the hospital.

"We believe in miracles because , we live with one! "

www.our-sma-angels.com/elizabeth

http://www.aadietinfo.com/