Saturday, December 20, 2008
Our lives are forever changed
This week has been potentially the hardest weeks of our lives. As our faithful blog readers know, we did a TON of testing on Evan while we were in Florida and we got a call from the doctor this last monday, December 15. She said that the last blood test that we had done confirmed that our angel has spinal muscular atrophy (SMA).
SMA has many different types and Evan is type 2. This genetic disease has a huge range of effects that it can have on a person, but it does mean that he will be wheel chair bound for the rest of his life. Monday and Tuesday were hell, and everyday since has been better with some ups and downs. We are taking it all in one day at a time.
We have been so blessed with peoples prayers and good deeds this week. The first two days Justin was out of town and my mother in law drove into town to be with me that first night. My beautiful friend Kathy came the next day and spent the whole day sitting next to me on the couch while I fell apart. There have been so many people in our ward that have brought over dinner so I didn't have to think about what we were going to eat. There have been people who have brought over chocolate and other treats for when I need to "self medicate". There have been people who just stop by to give me a hug and a shoulder to cry on, and even people who have called on the phone just to make sure we are doing ok. My mom is going to come and be with me in January and I am drawing a lot of strength from that. We cannot express just how much all of the love that has been expressed to us over the past week has lifted us up. Thank you so much!
We have learned of a second cousin in Utah who has had three children with SMA, and today we are going to meet another family in Calgary that have two children with SMA, and tuesday is our neurologist appointment. We are doing everything that we can to learn about what it means to be the parents of a child with this specific dissability.
We know we will be ok, and are trying to be strong in the meantime. We love Evan with all of our hearts and more. We will do anything to make sure he is always happy.
Click here to read more about SMA