Wednesday, November 20, 2013

Just Believing- Living with Spinal Muscular Atrophy



Its been a fast fall with winter approaching quickly. So, many changes happening. Lizzy is growing up so fast I feel like life is spinning ahead at full throttle. The past 10 years has been one of the most life challenging as any years before. Paul and I went from being totally financially secure and working hard until my injury. Then,loving a grandchild so much we stopped life to help give her the best life we could. Then, Paul being with out a job. He could not get work because of his age. Then, his accident making him disabled for life.We lived on so little. We had a few friends that helped us when it got so bad we did not know how we how going to make it through.  I can not believe we have made it the past three years (which was the hardest ever in our almost 39 years of marraiage). Patience and believing. Its amazing what giving it all to God can do for your life. Now, after all this time we are going to be okay. Paul won his SSI disability hearing and of today he starting making a monthly income. I do not have to do it all alone now and lay awake nights trying to figure things out. He has not got his back pay as of yet. We are using a lot of the back pay to purchase a handicapped accessible van since we were unable to raise enough funds to get her one. We did raise some and thank you so much for all that helped us do that. So, we are looking at used ones with low millage. Its a decision Paul and I made together. Its so hard for her getting any where with out one. I am getting older and she is getting bigger so lifting her to the back seat of the van with out help confines us to home all the time. Paul is not strong enough to help with the roll away ramp. We would like to do things with Lizzy by ourselves. I would like to take her by myself to visit her great grandmothers or the grocery store. We are unable to do that. We will all gain independence from getting Lizzy a handicapped accessible van and she will be able to stay in her power chair and look out the window. When this will happen I have no clue that is the just the plan!  Would be great if its soon!! It will all work out. You just have to believe!! My stepmother said on her death bed when she heard Paul won his SSI disability " You and Paul are going to be okay, now" She had compassion and a look of relief when she told me that. She is watching over us. I miss her so much it hurts. I accepted the fact she was going to die. I  just have not accepted the fact she will not be in the physical world in my life.
Lizzy has been doing great!!  She is very excited about Christmas this year. She has not made a list yet so we have no idea what she wants. She says " She has everything she wants!" I am like huh? That statement coming out of the mouth of a 10 year old!! I am sure she will figure out something or she is taking after me and my frugal ways I have developed in the past 10 years! I doubt she is taking after me. 
Have a great Thanksgiving!! 
We believe in miracles because ,we live with one!" 
www.our-sma-angels.com/elizabeth

No comments: