There has not been one day this past year when I have not marveled at Adrens improvement and growing strength in his legs, or felt such gratitude that he is
walking and
running! Things could be
so different and I am bursting full of gratitude. I've been in contact with doctors doing research on AFM at John's Hopkins in Maryland. They contacted us to get DNA samples from our family for the ongoing research for answers. I had a great conversation with Dr. Dougal, and was humbled at the stats of children diagnosed along with Adren. His case and recovery is truly an exception. Of the many cases she is studying, Adren is the
only child who has made such improvements and in some cases even able to function. While Adren is not 100% recovered (only one child is reported to be 100% recovered, and it was a very small case of muscle weakness) - Adren is still experiencing some muscle weakness and at his one year check-up showed smaller muscle growth in one leg, as well as his weaker leg almost 1/4 inch shorter compared to the other leg. But he can
walk and run! This is amazing considering he was completely flaccid from the waist down.
Last year after we arrived home from Primary Children's I remember feeling so worried and full of anxiety for what the next year would hold. I had a sense things would work themselves out, and also felt like we needed to do all we could that was in our power. I knew we had some hard work to do, both in Adren's recovery as well as figuring out the looming bills. I wasn't sure what our grand total was yet, and didn't quite want to know yet! I remember packing away Christmas and jotting down some thoughts on paper and tucking it away in the bag with the Christmas tree star. I do stuff like that! (just for myself to see) I like to see where things are at a year later. Here's what I wrote:
1/7/15
Packing away Christmas, I am wondering what this new year will bring? We are all so concerned with Adren. We don't know what this year will hold for him? How far will he improve? How will we manage the bills? So many things are uncertain. We have had so much love, help, meals, prayers and fasting from our wonderful ward, friends and family! We are so very blessed. Adren will hopefully start school next week, in a wheelchair. He makes his way around with a walker. He can slightly move his right leg, he can lift the knee a little and slightly curl his toes. He needs help putting on shoes and other things. He is happy and has a great attitude. We are hoping and praying for the best this year! What will one year hold?
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| Hiking and enjoying Kolob Canyon |
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| Touring the new Provo Temple with the youth |
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| Relaxing and chatting with me |
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| More relaxing and chatting with me (my favorite) |
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| Jumping and climbing and hanging out with his friends (probably his favorite) |
I am amazed at what one year has done! Adren is doing all the things he loves to do, anyone who doesn't know what he's been through wouldn't even suspect leg weakness. It is hard for me even to tell as I watch him play soccer and jump and run. We were able to work with the hospital and they were so kind to adjust part of our bill, and we were able to quickly pay off the remaining debt. What a relief! I told Adren if he ever has an opportunity in his life to donate to Primary Children's-
do it. I can't even think of this experience without being so overcome with gratitude! I have learned we are truly watched over always and comforted- things do not necessarily work out in our favor, but we can be comforted in every case. As Elder Scott describes,
"a buoyant peace". That is
exactly what I felt! A buoyant peace at a time things seemed to be unraveling faster than I could comprehend. It only comes from the Lord. Here's his excellent talk:
https://www.lds.org/general-conference/2014/10/make-the-exercise-of-faith-your-first-priority?lang=eng
We love Adren so much, and I am so grateful for his positive attitude, and being able to take on one challenge at a time. He never let his situation overwhelm him or let himself be discouraged. I know he'll always remember this experience, and continue to learn the many lessons from it.
