Just living life,Finding Joy and Independence - Living with Spinal Muscular Atrophy Type 1

Lizzy has been enjoying life and I have been tagging along with her. Watching this new found independence and watching her reactions have me in awe. Who would of thought one little girl can enrich my life so much.

We have had appointments like crazy and afterwards we have been taking Lizzy with her chair to the mall and stores just to look around. She loves it!! She was not in her power chair very long  the last few years  because of some issues with seating and bracing. She had been to Wal-mart once or twice in her life in her power chair but had needed to come out of her chair due to positioning issues. Now, its a different for her she is in charge of what she sees and where she wants to go while in the mall or a store. Amazing to see her like this. The comments she makes are like she is a teenager. Like , "Gross, or Truthfully, Nina its just not my style or that is babyish looking." Imagine seeing everything from a manual stroller laying flat for over 7 years. Then, you are 7 years old and 8 months old and see a totally different world just sitting up. Its like she has never seen these things before. I love it!!
No matter how much things are going on around me when Lizzy is doing well and things are great I am as happy as I can ever can be. I find so much joy in Lizzy and Corbyn these days. I love the rest of my grandkids deeply but my life is surrounded with these two and their discoveries.

 I am so glad we kept pursuing finding a wheel chair vendor that knew how to figure things out for kids like Lizzy. I just wish it would of been a few years sooner. You are used to the vendors you have had for a longtime and want to give them every opportunity to accommodate your needs with their professional expertise. When they do not accomplish that you have to find some one that will. We had this equipment vendor we have now for a very short time before for a kid kart  for Lizzy and switched to another because we were told he did not deal with the power chair Lizzy's needed. Yes, he did and does. Live and Learn!! He was great figuring out just what she needed!!

Lizzy is about done with school and she is not likening the fact she will be done for a few months. We could not prove Lizzy was cognitive delayed enough to have her in summer school. She is a pretty smart kid.  Its summer so we have a few things planned but until we get the van fixed we will not going too far away. Broken belt in the tire, DVD quit working and a noise in the front Never ending list of things since the van hit 100,000 miles awhile back.  Having Lizzy chair in the van also there is no room with all we have to take with us to travel but we will live with it. We can not get a different van because Paul has still not gotten a job but he just completed a college computer course and math fresh up through Job Service so lets hope his newly acquired skills help his chances of getting a job SOON!!  We are living with in our means but with no income on his part and just mine the future for us looks petrifying to say the least!! It will work out I have faith.

We have less drama here since Lizzy's dad is not around so much.  Christen is treating me a bit better but there are days..... ahhhhhh where we still bump heads. Life's too short to argue... Not good for Lizzy either. Christen needs to learn how to respect me as a mother not as a friend or sister. I am Mom and I deserve respect. As, I said she is getting a bit better.

 Since, RSV I am pleased to say Lizzy is better than before. She is doing great in swim therapy. Her back is improving so much . Her strength is amazing. She is filling out and not so tiny anymore as she has been since she was an infant. She is such a beautiful child. She loves life and is exploring her new world of being mobile again.

Thank you to all of you that are in our life that share the same joys as us. Having a child like Lizzy in your life makes you stop, take in a deep breath, enjoy happiness and all life's wonders. We are all connected and to find peace and happiness in our world we have a achieved one of life's greatest gifts. Whatever method you use to define happiness the Dalai Lami says "That happiness is a state of mind more than a reflection of circumstances."
Live life one day at a time is the way I have learned to live.


"We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth