Sunday, December 6, 2009

A day away - Living with Spinal Muscular Atrophy Type 1

Today was a better day . Christen, Elizabeth and I took off for the day. Van packed we headed for the mall and a craft store to begin with. We left around 1pm.
If anyone wants to know where the best deals for Christmas dresses with the best quality is SEARS. I am telling  you I have looked online and no place can beat their prices. I wanted to go look at some of the dresses I have been looking at online.  I have looked all over  online I think the best deals are at Sears. They are 55% off. We were just looking today. Walking around the store I was stunned at the great deals on all their clothes. Great Quality too. So, that is a FYI.
We also went to Michaels also. They had Christmas wooden ornaments 50% off . They are .50-.99 a package. We did get Lizzy some to paint since they were cheap, keeps her busy and not bored. We have to do projects all the time. I know we are on a budget but I did not spend that much and it made her very happy. 
Then, we went to my daughter Dana's house picked up Robby and took him with us. We had to go get Rachael from a choir event in their town. There was Santa and MRS. Clause at the hall where we had to get Rachael. Christen was eyeing the crowd and there was hardly anyone in line. Christen decided Elizabeth would see Santa now. She ran back out to the van and said "Lets get her in there quick " Alrighty, then Elizabeth got to see Santa and Mrs. Clause and it was FREE.  FREE can Not beat that price and they did a picture and sending it to us. Paul paid like $25.00 for pictures for Lizzy at the mall last year and the year before. I wish I would of had my camera but I didn't.  Elizabeth asked Santa for" An American girl doll and socks then she went blank." I guess she did not have time to rehearse her list.   Socks? I know she told us cool socks but she has lots of socks not sure why she insists on socks this year. Her list at home is pretty long. Ranging from dolls to chocolate candy. She got upset on the way home saying "I forgot to tell him this and that....." I said" he knows what  you want Lizzy so no worries sweetie".
So, getting away helped a lot today. It was a good day after we left.

I laid awake all last night just crying over and over thinking about my life. I am not feeling sorry for myself when I am crying for the memories I miss. I miss a lot of our past.  I miss all our girls at home. I miss what Paul and I have lost in our relationship. Just think 35 years of good times as well as the bad.
A good friend reminded me I am the strength that keeps things together in our family. I guess I do.

Christen caught Paul yesterday with swollen eyes several times I guess and when she told the thought just tore me up to know he was at that point. To know he hurts just like I do and shares our worry was  hard for me to realize. He just doesn't not say a lot. That is why he has been tinkering around in his shop for months. He has always been so strong.
He was my support when everyone else was telling me there was nothing that we could do save Elizabeth. He told me I would find a way. He said "We have to save her" He helped me so much with her in the beginning and still at times helps a lot with her as far as keeping her busy. So, needless he has been my rock.  He has just seemed so fragile for awhile now. He is still the love of my life.

Thank you to all that replied to my last update.  I was not even going to post about it and then I did.  My fingers took over. LOL
Thank you for your kind words and for caring!!! 

Many prayers to all the sick kids!!!!!

Keep us in your prayers we need them to keep us strong.

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

2 comments:

Unknown said...

Glad to hear she is doing better. That girl is a pistol!!! Give her a big hug from all of us here!

Shantay said...

That sounded like a cool day of shopping. I am glad you found some great deals.

I read on your blog that you were bikers. We have a Harley. Not sure if you have yours still. I was preggo with surrogate twins last year and haven't road since Summer 2008. I have missed it, terribly. I can only imagine how much you must miss it.

I have some milk for Lizzy and would like to have it picked up by Dec. 18th. Message me on my blog or email me so we can set a time.

{{hugs}}