Why I Started This Blog

I wrote the epiphany that is the first post in this blog, a few days ago and shared it with a friend who asked if she could share it with a friend who then shared it with S., the mom of a little boy with a degenerative muscle disease. I received her response to my email on Saturday night, while I was fasting, and after returning home from the Relief Society Broadcast, and was so touched by her email, that I knew I needed to start this blog. She generously gave me permission to post her note here: 3 Nights ago, Blue & Gold Banquet. Boys racking in the awards, aquanauts, swimming, basketball, soccer, etc. etc. etc. Overachievers of America it felt like, because I get bitter sometimes. My son got the good manners belt loop (but that's so cute and precious I told myself, not bad). While the other kids ran around and played and laughed, he wandered carefully around us, alone for most of it (but I want him to be running around and having fun I told myself). I thought about all the scout things he won't be doing with all those boys there anyways, like hiking, archery, and normal camping and trek. I wondered whose house he's going to be able to get into when he's in a power chair and why he's advancing to the next den with two leaders who never asked for the extra special workload and are probably just as perplexed as we are sometimes about how to adapt scouting for a little boy with a terminal disability and why? Not that scouts is an eternal principal or anything, but that's just "run down me" that's been sick this week and that's why I'm struggling in addition to crying over what that mom in California said.   Thank you thank you for sharing. I am going to print that email and glue it somewhere for me to convert myself to it. PS- I was so feeling like a loser yesterday because my new "over 40 memory loss" helped me schedule two things at the same time yesterday. Lighthouse Market Research where they do not accept your stand-in, and Adaptive PE Assessment with the District pro yesterday. And guess what? I had to send my sick husband to the school to deal with adaptive PE while I was answering questions about dairy. I felt so stupid, and guilty for not realizing the scheduling conflict until both appointments were hours away, putting it off on my sick husband, and bummed I missed out on important school talk about my son. And that was how it was going to end, but after reading the email, I see the blessing of my "scheduling conflict". LOVE you. And thank B. for sharing too because now I feel less bitter about scouts and less stupid about yesterday. ------ S., I was so touched by your real, and heartfelt letter. Even though you feel less bitter now, I still want to tell you something. It is the greatest blessing in the world for those scout leaders, and the boys, to adapt the program so that your son can be included.  They are disciples of Jesus Christ!  I used to keep my son and myself out of the circle everyone else was in, but I've hired teenagers from church (and several won't let me pay them) to play with and do the neuroplasticity exercises with my son. We had one family volunteer to take him for five days so we could go on a vacation, and THEY thanked US for the experience.  I know our boys don't share the same disability but I related SO much to what you wrote. There are teenagers in my ward whose lives will be changed forever because of working with my son--two of them have said they want to work with kids like him as a career. One young adult who spent many years as a "bad boy" teaches my son swimming lessons once a week, won't let me pay him, and credits this service as a direct link to blessings he has desperately needed and recently received. Just accept a big virtual hug from me! I relate to a lot of what you're going through, but you will be so blessed if you let others into your son's life, and they will be, too. I'm going to put the Primary policy on disability on another post to show how committed church members should be to inclusion.