All about Lizzy's life and my life as Lizzy's caregiver. Lizzy has Spinal Muscular Atrophy Type 1 and is a miracle! She has NEVER been able to stand, walk or sit(with out assistance). She is such an amazing child with the determination to over come many of her battles with this terrible disease. She is a happy child and is always smiling.
Friday, March 4, 2011
Living with Spinal Muscular Atrophy Type 1 - Magic DVDs and Having Hope
Its been raining here today. Its funny how when the sun shines you feel full of energy (even when its super cold out). Today, rain dark and it was in the 50s and a Blah dark wet day.
Elizabeth and I watched the DVD version of BBCS Life narrated by Oprah Winfrey. Bought the series( used but in great condition). Lizzy loves watching them. Great learning experiences. Lizzy says "These DVDS are magic" Today was a good day to watch them again. Watching Lizzy's face was amazing while she was so captivated by this unique series about species that live in our earth. I just love her so very much!!
Paul has had no call backs on the job interviews. He has called and went back for his own follow ups and NOTHING. This is getting scary. To be cut off unemployment and STILL every week applying for job with no success. The news says "Its getting better in the job market!" He still has not been able get hired . He was talking to one of his people he went to school with and they said" The way the tech school does it is that they only have to get 80% hired jobs with grants " They hope people drop out after mid term because they still get paid. . Paul was on the list NOT to find a job for( From the tech school he attended I guess) from the beginning because of his age!" Is that a bunch of BS or what? They were hoping he would not of had a 4.0 average and drop out. Well, he didnt drop out and had a 4.0 and NEVER missed a day of class. So, what a scam but..... he did learn things he didn't know and needed that schooling to secure himself a job when things open up. There is no PROOF of this to our knowledge but....can you believe he was told that? He showed them huh?
Its been so peaceful here last few weeks with just the four of us. No drama.... just peace. More positive.
Paul is pretty positive he will find work soon. I am just so worried about losing the house but trying to keep positive. The monthly bills are draining our money. I can not wait for spring and of a gas bill and electric bill. If If we could afford it we would go with solar energy. It would cost us a fortune but it would save is so much .
Just paid off all the utilities and house payment. Huge expense. Over 600 for a monthly gas bill? What is up with that? and over 300.00 for electric?? Why are these bills so high? I have Just Energy and locked in my gas bill a few years back. Was it that much colder this last billing cycle than ever before?
I can almost cry sending those checks out but they are paid for another month. "Sigh of relief" Then, soon it will be yearly insurance premiums for car and the van. ugh... It will all work out some way some how. I believe that God watches over us and he will make sure somehow we will survive. We have HOPE and just look what we have accomplished with HOPE.
Its Christen's 28th birthday tomorrow. It did not think any of my kids would be living with us still when they are 28 but you know I guess this is way its suppose to be.
My tip for this post is to use Clorox wipes or Cavi wipes to keep door handles, phones, counter tops, faucets, arms of chairs , tables, toilet seats,etc every day to keep germs away . Not just during flu season but every day. Make sure you wash your hands after you get the mail. If you use suction caths try to get sleeved ones. Cuts down on illnesses . Make sure you wash all equipment including masks after every use. Just some things I do to keep our home safe for Lizzy!
Many prayers for MJ who is in the hospital having a procedure done, for Leah Miller to make a
quick recovery, for our friend Sheila and her family , for us to stay positive and say extra prayers Paul gets a job soon.
Magic is believing in yourself, if you can do that, you can make anything happen."
-Johann Wolfgang von Goethe
"Believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth
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2 comments:
We love you guys. We cannot wait for the warm weather!
Hi Lizzie
My name is Jenna and I came across your site. You are full of bravery, courage, fight, determination and smiles. You are a hero! I am so happy that you got to meet your fav. band! That is so special just like you. I was born with a rare life threatening disease.
http://www.miraclechamp.webs.com
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