Because I am friends with several other adults with Muscular Dystrophy, in the last week, "Dear Julianna" has become a trending topic on my FB page. It occurred to me today that other people outside those disability circles may not be aware of what that phrase meant. I first became aware of Dear Julianna about a week ago when I read the news story behind it all, about a 4-year-old named Julianna Snow. The little girl was diagnosed with Charcot Marie Tooth, a type of MD, in a very severe form, [Tangent: a disease I know well from years of attending summer camp with other kids with Muscular Dystrophy.]. After having significant complications, her family decided to give Julianna a proposition "Heaven or hospital?" [Tangent: You can read the full story on the matter here.]
I usually try to stay neutral on right to die matters because to me it's an incredibly personal and complex issue that is all shades of gray, but on this I could not stay quiet. Julianna is 4 years-old and in no way equipped to make arguably the most difficult and mature decision one could ever make. [Tangent: When I was that age, I would want Kids Cuisine for dinner and immediately change my mind when it was placed in front of me and want ramen noodles.] Many other adults felt the same way and started Dear Julianna, where people with different types of Neuromuscular disease give her and other children like her a glimpse into the future and make them see that in the trite words of Belinda Carlisle, heaven is a place on earth. I hemmed and hawed over it for a while because I try really hard to be respectful of other peoples decisions, but today something clicked and I felt the need to write my own letter...not only for Julianna, but for little kids struggling against an illness who feel like no one understands. Here is what I had to say:
Hi! My name is Kimmie. I am 32-years-old, and will be 33 later this month. I know I am a lot older than you, but I think we have a lot in common. Like you, I have a type of MD, have a lot of trouble breathing and love my family and laughing in general. When I was 2, my mom noticed I wasn't walking like I should and was floppy like a LaLaLoopsy Doll. After doing lots of tests, the doctor's found out that I had Congenital MD. No one in my family had ever had this disease and I'm sure my mom and dad and 3 siblings were scared. MD can be very scary. I know that.
Since I was 4, I have spent a lot of time in the hospital and going to see different doctors, but those doctors have always been able to help me and make me feel better. I have had lots of surgeries: to straighten out my back and fix my feet and legs. I have spent many years with hot pink casts, which I secretly loved...because who doesn't love hot pink? I've also spent a lot of time being sick in the hopsital. Just like you, my lungs aren't very strong and I have to be very careful to stay away from germs. More than once, I have gotten so sick that I have had to have a tube put into my throat to get me well. For about a week when I was 27, I had a small hole cut in my neck to help me get over an illness. I thought I may have to keep it, but my doctors and therapists worked very hard to get me well again and now I breathe on my own and don't even use oxygen.
There are some parts of having bad lungs that are not so fun. At night I use a breathing mask so that I can take deep breaths and keep my lungs healthy. I also use a little mouthpiece to help me take deep breaths when I feel like I need a rest. (I'm little and sometimes when I eat too much, it's hard to breathe!) By doing this, it helps me have enough energy to be active, which makes me happy because I love to stay busy.
I get to do things that some people think people in wheelchairs can't do, and I love to prove people wrong. I went to college and lived on my own (with a lot of help from some assistants that were there to help get me out of bed and take showers). I have worked several jobs and now I work at a job where I can help other people with disabilities. I even drive my own car, which I like to tell people is just like a Transformer. I drive it from my wheelchair and can do it all with my hands. It's kind of like a video game. I also have a lot of really great friends that don't mind helping me once in a while and an amazing boyfriend who I love very much. I love to write so started my own blog 5 years ago called That Girl in The Wheelchair, where I get to talk about anything I want! How cool is that?!?
I know things are rough and that living with MD is not easy. Some days it's really really hard, and it's frustrating because you see your friends and family worrying about you and not being able to help. Please know that there is hope and there is no way to know what the future holds. It could hold some really great things if you are really stubborn.
Much love from Nashville,
If you want to write your own letter, send to firstname.lastname@example.org or you can find more information about Dear Julianna on their Facebook page.