Christmas thoughts and Lizzy(Spinal Muscular Atrophy)

Hope you had a wonderful Christmas. We had two days filled with great family time, good food and memories that will be implanted in our hearts.

It is hard to face when your parents are getting up there in age. Man, I think of my parents when picturing them in my head as being 50 the age I am. It that not weird? I don't know but seeing my mother this year hit me hard. She is not doing well.
We would not let Mom do a anything Christmas Eve. It is just tradition that we spend that day with Mom. She used to cook like crazy . I made the Italian beef (we had a 3 hour power outage here and I was freaking out but it turned okay after the power was back on and I boiled the heck out of it and it was very tender and good ). The girls all brought something . It all worked . Christen and I cleaned up. It was nice.

We actually made it to brunch at Paul's sisters on Christmas day. Got Lizzy up,bath ,ready,treatments done and out the door by 9:30am It was great day.
Paul's step sister Ingrid had gotten engaged on Christmas Eve. Missed his family too. Many were not there. They were out of the country or they didn't want to attend.
Sharon's house is just beautiful.


I missed my brothers and my sisters as they all live in other towns, states and other countries. That hurts they are so far during the holidays. I would love to before I leave this world to have one more Christmas with them all here.

Lizzy has transformed into a beautiful, intelligent, opinionated little girl from the toddler she was a year ago. She is so much stronger and the look in her eyes is so strong ,determined and she just knows just everything. She knows what neb she needs, if she has a plug, reminds you to flush her with water but not too much.... if she has had her meds. She is just too funny. She never stops amazing me. She just makes us all want to do what ever we can do to help her. She is my heart my life.
Just seeing the joy in her eyes and the happiness in her bright face makes my life so much more full filling. She got everything she wanted and even more. She had a great Christmas.

We have one more Christmas gathering on Sunday with Dad.

I have packages to mail out this coming week and cards to mail I didn't get a chance to do. Christmas snuck up on us and the bad weather made it even harder to get caught up on the things I needed to do. Then, worrying about spending money made it even harder to get those things mailed out. I just hate not knowing and not being able to do the tings I love. I love sending little gifts and baking. I did bake but by the time I was able to send them out due to the weather they would of been not able to eat by the time they arrived hundreds of miles away. So I will bake again this week-end.

Paul has not worked since a week ago WED. He finds out the 29th what will happen to his job. I am also worried about getting to CA in March for Lizzy. Some way we will do it!!

Hope you all have a Happy Healthy New Year and Many prayers for all the sick kids.


www.our-sma-angels.com/elizabeth