Letter of the week 12-14-11

Hello everyone….

I receive thousands of letters about “little man” all the time… but there are some that just hit so deep. This one, from Amanda, a 19 year old, not only humbled me, but had me in a pool of tears. After she sent the letter and we communicated back and forth I told her I’d really like to see a picture and she said, well, ” I’ll look for a few good pictures of me. I say a few, because I recently shaved my head (in support of/kind of a joke with my best friend who just found out that he has brain cancer and had to have his head shaved)”

Her parents I’m sure already know this, but Amanda is one very SPECIAL young lady. I told her she was beyond beautiful, bald, polka-dotted… her soul shines through these photos like it shined through her letter. Please read her story. It’s simply amazing and I must say living with 4 tweens/teens I sometimes wonder what is happening to our youth. Amanda is the best of our future. She is made of pure gold and honey….of strawberries and steel.

Let’s all keep white light and love out for Shel, Amanda and their family.
With Love & Humility,
Nicole

Hi. I’m Amanda Fleming. I’m 19, and a sophomore in college.

I wanted to write you a hand written letter, but couldn’t find your address online.
I have a ten year old brother named Shel. Shel was born with a severe mitochondrial disorder. I don’t want to assume that you don’t know much about it, but most people don’t, so I’ll give you a little bit of background. Not nearly enough research has been done on mitochondrial disease, and the disorder varies greatly from person to person, so it’s difficult to generalize. Shel’s mitochondrial disorder is increasingly progressive. Born without any sign of the disorder, he has since developed enough medical problems that I myself am not even aware of all of them. I suppose most importantly, he has dysautonomia and gastroparesis. He currently has a G-tube, a J-tube, and a central line. He can’t eat, can’t speak, and loses abilities everyday. He used to be able to eat regularly, and at one point he could say a few words. So he knows what it was like, and remembers it. Walking is becoming difficult for him, especially being attached to so many tubes and pumps. He does use sign language, and knows quite a bit, but not enough to express himself to the point where he is not constantly frustrated.

I’d say that Shel has spent at least one third of his life in the hospital. When he’s in the hospital, up to weeks at a time, my mother does not leave. She sleeps in the hospital bed with him every. I almost feel though that the time that he’s home is even more difficult for her. We’ve tried many live in nurses, but the medical attention he requires is so complicated that only my mom is able to keep up with it. I haven’t seen her do anything that I would consider enjoyable in years. I’m sure you know how intense the care for G and J tubes, along with a central line is. He receives at least 35 different doses of medication a day, which she must administer through his central line.

I’ve only recently admitted to myself what an affect this has had on my family. I’ve spent about 4 months of the last three years in a psychiatric hospital for depression. All of the many, many therapists that I’ve seen have assumed that my issues are attributed to his. This has always made me furious. But recently I’ve discovered that maybe, at least a little bit, I’ve been in denial. My family seems perfect, even to me. I couldn’t ask for a better one. But it is quite obvious the strain this has put on my parents’ relationship. Because my father’s the only source of economic support in our family, he works from early in the morning late into the night. He hasn’t taken the time to learn how to take care of my brother, but I honestly can’t blame him. I can’t even imagine the impact it will have on everyone in my family, especially Shel, if they separate.

I am not sure whether I want to spend my life with a man or a woman. But I am even more sure that I’m already in love with my future child. I’ve always felt it, and felt as though I know them. I can’t really describe it, but my child is already a part of me. I’ve had my heart broken twice in my rather short life time. But what makes me feel better is that I know that I will love my child more than I’ve ever loved anyone else. I already do. The thing is, the mitochondrial disorder that my brother has is genetic. There is a chance (I’m not sure to what degree) that my child will have the disorder. This breaks my heart, because I honestly do not believe that I am capable of properly caring for a severely ill child, mentally or physically. I wish more than anything that I could.

I can’t remember the last time I did something alone with my mother, or even have longer than a ten minute conversation with her. Often when Shel is in the hospital, they are three hours away at Boston Children’s Hospital. Having been in high school, and now college, rarely do I have the opportunity to visit them in Boston. During my junior year of high school, a month and half went by that I didn’t see my mother or brother.

But, in my eyes, it’s worth it. Despite the physical and mental pain that Shel is in at all times, he has a spirit stronger than anyone I know. He is also the most loving human I’ve ever encountered. He spends most of his time in bed, and one of my favorite things to do is lay with him and read or talk with him. My mom tells me that every morning as soon as he wakes up, he asks if i’m okay. His prognosis does not look good. I’m aware in my mind that he won’t be with us much longer, but I can’t accept it in my heart. After ten years of his life, I’m finally starting to. It hurts more than anything.

I guess what I’m saying is that I’m so thankful that you made the documentary that you did. I can’t imagine how hard it must have been to make that.

I hope that you have time to read and respond to this, but I absolutely understand if you do not.

If you’d like to see, I’ve attached some pictures of Shel.

With all the love in the world,
Amanda Fleming




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