Saturday, May 4, 2013

Living life and Challenges- Living with Spinal Muscular Atrophy

Sorry,I have not posted in awhile.There has much going on that has not been good. So, I feel I did not need to write when I feel that way. So, I do not post when feeling over whelmed.

Lizzy lost her dog two weeks ago. Pepper has been with us for over 10 years. Lizzy loved feeding Pepper french fries, pretzels or things she would lick and drop. So sad. When we go any where and come home Pepper would be wagging her tail and shaking her head barking greeting us.
This is the day before Christen and Paul had to take her to the vet to be put to sleep. 
I cried for about 4 days. It broke my heart. She had started throwing up blood and was unable to walk. She had a huge tumor from her leg to her groin area. She got bad very fast. She was a old but we loved her so much. She will be greeting me again some day. Love you Pepper you were the best dog we ever had. Miss you so much. 

Lizzy had some kind of virus the week Pepper got bad. Lizzy had high temp, sore throat and her nose kept filling up. I got her on antibiotic soon as could.  She did really well with this illness and with in a week she was bouncing back.

Lizzy has been outside a lot and all over town . We just went to the library on Thursday. She has been taking walks in her chair with her mom a lot. Its great they are spending more time than ever together. I can get things done like cleaning. Since Pepper is gone I have been shampooing carpets among many other things.

Lizzy is going to have summer school this year. Last year she did not but with her surgery and missing so much school we think she needs to have it this year. We are not able to do any vacations at this point so summer school might be a good idea. Working on many things for Lizzy to enhance her life. Her power chair has helped her quality of life since her surgery.

Lizzy has had to deal with a lot this year. Her father disappeared completely from her life. He blames me still for the break up with Christen. He says" I controlled were they went and what they did." No,  he never did accept Lizzy had SMA and never wanted the responsibilities of a child let alone a child as special as Lizzy. He only wanted Christen. He needed to blame someone so I guess its me. I do not care. Every-one knows the truth. I step in to help Lizzy when he stepped out and just wanted to be Dad for show around others. Lizzy deserves better. Lizzy has done really well with him not being round and gives her own opinion about things. She understands more than any of us would ever guess. She has been less whiney and does not get upset her mom goes out with friends anymore. Its  like she feels more secure that her mom is around more. Its amazing how much less drama is around and how calm our household has become. I like it!! 

Our faithful van broke down again. Christen got the part to fix it Paul put it in and that apparently is not only what is wrong. Not sure when we will be able to get it fixed. So, for now we will just walk and do what we can around town. Its almost to the 200,000 mark. We are doing a fundraiser to raise money for a new one. We have raised 850.00 so far. We are planning some other fundraisers too. We shall not stop raising money until we get Lizzy's the handicapped van she needs.. All the money we raise will go for the van. 

Many challenges have we have faced lately( well many the last few years) but we will get through them. 

Lizzy is my inspiration . Her and my faith keep me going. She is a funny, ornery,sweet , full of questions and such a little fighter. She has so much personality. She has a passion for life and everything it brings her. 
She is hopefully going to get a service dog soon. She was moved up on the list so hopefully we start the process soon. They have one in mind for Lizzy.  A poodle named Logan. I hope they like each other. We should be finding out soon when we get to meet Logan. Now, if we get just a small miracle so we get the van fixed and maybe we will be able to drive 60 miles for her to do that. 

Had a house full today. Its was Rachael's boyfriend's Prom. Rachael and her friend Cassie got ready here. Oh My... She was so cranky and nothing seemed to be right for Rachael!! I called her "Promzilla". I hope they had a wonderful time.




 





Where did the time go? Rachael is all grown up. Seems like not so long ago she was born. Lizzy and Rachael are very close.

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






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