Picture above is my girls and their Paternal Grandmother Barb July 3 at the family reunion in Fairbury,IL for the Saathoff side.
Its has been so hot here this past week. The humidity has been unbearable.
I have been thinking about the past six years. Wow, its been a whole change of life style. Learning what is close to my heart. Our first time flying on a plane was the trip Christen , Elizabeth and I to CA in June 2004. Never in my life had a had enough guts to fly until Elizabeth needed us to do so to find ways to help her. It was shortly after her diagnosis we found ourselves on a plane going to one of the top hospitals in the country to save our girl. Here we were clueless on what to expect. The first for a lot of things for us. Meeting DR.Wang and the staff and staying in California for the firt two weeks at the Ronald McDonald house seems like forever ago. DR. Wang help us so much!! He gave us hope when we had lost all hope.
Then, in July we were in Madison.WI meeting with one of the top SMA doctors in the world DR.Mary Schroth. She helped save Elizabeth's life. Getting Lizzy on the NIV protocol then learning what we know today and practice as daily treatments every day. I remember how hard it was putting on the bipap mask. I remember how we could not get machines and had borrowed ones from two organizations. G-tube /nissen surgery, SUCTION.... Never knowing if Elizabeth would make it to the next day. Well. here we are at Lizzy almost 7 years old and she is doing well!! I feel comfortable talking to so many parents. doctor, medical personnel and all I want to do is help so many people NOT go through what we did and help make their lives easier than ours was. If I can help just one family save their child my life like I have Lizzy's that would make me feel like I did something great. Thank you God for saving my girl, keeping her healthy , making her who she is and changing my life. Thank you God for helping me getting to this point in my life. Thank you for all the special people you brought in my life.
Now, I can tell about this week.
Well ,we had all the oil changes receipts for the van and we had to wait for the Warranty company to show up. It took them till Thursday to show up. Well, they did and said everything was in order but... they were coming back the next day to check the oil pan. They NEVER showed up on Friday . So, I called and FINALLY got a loaner. Its not the best vehicle but its a loaner. I don't think we will take it too far.Its a 136,000 miles on it and a Dodge Caravan and a 2000.
We pray they will pay for the engine. We plan on keeping the the van now and not trading it in but.... we need a bigger van to be able to take Lizzy's power chair and her manual chair . Lizzy uses the whole back seat to ride in the van of ours. Hoping to do a benefit in the near future to be able to get just a regular van. Paul and my credit was not approved because we do not have enough income between the two of us right now.That was a hit below the belt but its our reality. Paul graduates in October.Hope he gets a good job fast!!
We need to get this house accessible for Lizzy. I am having a bit trouble carrying Lizzy up and down stairs lately because she is getting so big This house is in need of a total update. I still have wall paper on my walls in some rooms!! I have not updated this house since the 1990s but we did paint the living room, some tile in the kitchen and our down stairs bathroom was updated last fall. . Paul finally fixed the hole in the ceiling from the plumbing problem last week and I have kitchen cupboards sitting in my dining room still waiting for the kitchen to be finished. I have new carpet all rolled up in there also and waiting to be put down. All great ideas but getting someone HERE to help is like pulling teeth. Paul gives a 1000s excuses WHY he can not........ grrrrr I wish I could do things like I used too. He also says we have no money to finish. What-ever......
Enough complaining. You know it took awhile to get my focus from just Elizabeth. That is why everything was put on hold. Now.... I am not able to do all I used to do.
Fifty-two used to seem so old to me. I do not feel old just a but rusty....I will be fifty-two in nine days. Caitlyn Grace and I share birthday.
Many prayers to the families that lost a child this week. Many prayers to all the families dealing with illnesses and many prayers to all the families living with SMA.
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
1 comment:
52 is not old, and you definitely look younger than your age!
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