Saturday, November 14, 2009

Visiting Memory Lane - Spinal Muscular Atrophy

Sorry, no updates for awhile. I have been very busy with Lizzy teaching her how to read and teaching about all sorts of  things. I am liking this "teaching thing" very much now once I  got things figured out on what she needs to learn and how to introduce her to things.


She is doing great with the Myofascial Release therapy. Elizabeth said its making her feel so much better. I am learning how to do this myself. I still have a lot more to learn.

Christmas ads are every were you look!!  They have been since the day after Halloween. Its a wonderful time of year but this year.... (sighing) it is coming too quick and Paul still has not found a job so it will be the roughest Christmas for us since 1978. That is the last time Paul had been with out work for a few months and had just started a new job at Interlake. We had just paid rent and utility bills. We just moved into a new house. I took every cent we had to buy Dana (Our only child at the time) a $5.00 doll on sale at Osco Drug in the mall. It hurt. It actually still hurts that was all we could buy her. I was pregnant with Dawn . Those feelings that pained my heart, made me sick to my stomach and gave me cold shivers come easily rushing back just thinking about this time in my life.  Not being able to buy your 3 years old daughter anything but a five dollar doll was hard.  It was a lot of years ago. I guess it should not upset me so much thinking about it now but it does. We had a roof over our heads, we were healthy and doing everything we could for our daughter.   I was so very young. I was 20.  Me..... 20 years old. I thought I knew it all. I felt like I had life by the balls. Picturing me as 20 in my head is hard to do now. If you could do it all over again what would you do? Anything different? I am sure we all would. I would not for a second take back my kids but I would of done a lot of things different. I guess we are who we are because of the things we lived and learned.
Thinking about my mom back then. Wow, she was working and the head of the Nurse's Aids at the nursing home and doing so well. She was so strong back then. She had stayed well for many years. Not long after that she had another break down. She had many mental break downs while I grew up and I spent a lot of time with my aunt and my Dad. I do not know what happened to her. Why was she like this? I know what we were told  but why how can an adult woman with children just lose it? She lost all concept of reality. My kids to this day worry about her when she says something off the wall.  I swore at a very young age I would NEVER be like her.... ever. I think that is why I can live through so much and still remain sane. Things may keep me awake at night thinking about them or I get stressed out but I have never lost touch with reality.  I am nothing like her and I am so glad.  I do love my Mom. I guess thinking of what went through as child also makes me who I am today.
Alrighty then.... I am done visiting memory lane.  Some memories that still hurt to think about them.



Elizabeth is doing pretty well. Her O2 at night has been 99-100% and her heart rate has been so much lower while she sleeps. She is growing up too darn fast. She is so darn cute and the stuff she says will shock you.

She listens to EVERY THING and does not forget anything!!

We are so sorry to hear of so many sick people . My sister Rita called today. She is a nurse at her local hospital Florida and she is so sick. Sounds like the H1N1. Jake is still in the hospital unless he went home today. We are in our Bubble still. I talked to a Mom I know in Florida yesterday their 13 year old with SMA Type is sick.


Many prayers to my sister Rita, Hannah Price, Jake Goodson, MJ and all those who are ill.



"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

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