Meet Emily Rose… She’s Awesome

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Emily and my daughter at the beach

I try to cover a wide range of topics on this blog, and I’d like to step a little out of my normal box. I usually write about my kiddo, or kids in general. With that in mind, this week I am writing about someone else’s child. This post is about a little girl named Emily Rose. Why would I write about another child? Well, the catalyst is that it is Leukodystrophy Awareness Month, and Emily is diagnosed with this debilitating disease. That being said, if you are looking for a sad story about a little girl who can’t enjoy life then you are going to be disappointed. Emily could not be further from that definition.

I won’t dwell too much on exactly what Leukodystrophy is, but if you would like to learn more about the details of it there are many resources on the internet written by people who actually have an understanding of medical science. In short, Leukodystrophy is a disease that effects the white matter in the brain. The end result is a deterioration of muscle, various senses, and eventually the disease is expected to be fatal. It is a rare disease, and research on the illness is still relatively scant.  Now let’s back get back to our story…

Emily’s mother Sunshine was a work friend of my wife several years ago. They had remained friendly, but had lost contact on some level. When they reconnected about 2 years ago we learned about Emily. We found out about Emily’s diagnosis, and at the time things did not seem to be going very well. Emily had lost a lot of muscle control, she had limited vision, and she was suffering from extremely aggressive seizures on a frequent basis. The doctors, from what I understand, had instructed Sunshine and her husband to basically take Emily home to make her as comfortable as possible.  Now that we have gotten the awful realities out of the way, lets talk about a little girl who doesn’t really care what medical science says about the things she isn’t supposed to achieve.

Shortly after my wife started talking to Sunshine again, my wife requested I drop something off for Emily at their house. I will just be honest, I was nervous about seeing Emily in what I pictured as pretty dire straits. From the little I had read about the disease and with the information I had heard from my wife, I was preparing myself for the worst. I arrived at their home with the expectation of a sick, possibly bed-ridden, child.  I asked myself a ton of stupid questions…How would I react? What was the correct way to talk about her with her mother? Could I handle the sadness of seeing such a sick little girl?

Well, Emily took about 10 seconds to make me feel like an idiot for even having the thought of pitying her. She simply won’t let you treat her that way. From the moment I met her she was just a happy, playful little girl who was too busy discovering the world to be held back. Even at under two years old, she broadcast loud and clear that she isn’t defined by her disease. We played with her toys, we made music with some little bells she had, and she smiled her adorable smile at me. I remember getting home, and my wife asked me how everything went. I’m not really one for platitudes or cliche’s, but I just kept telling my wife “Emily light’s up the room… she won’t let you be sad for her.”

Fast forward a couple of years (a couple of years that according to doctors weren’t even supposed to happen), and Emily has made milestones that seemed impossible. Emily talks, walks, plays, goes swimming, makes absurd toddler demands, and has even started preschool. A large part of this has to do with the tireless work of Emily’s mother, and her impressive ability to keep pushing forward through walls in medical bureaucracy, and at the same time stay on the front line of Leukodystrophy research. Her drive has gotten Emily on some cutting edge treatments that are doing wonders for her.

Staying one step ahead of Emily’s disease is a fight that Emily and her family will be waging for years. However, there is a major change in the outlook. Instead of “Go make Emily comfortable.” conversation has changed to “What needs to be done so Emily can live with this?” As a parent, I cannot imagine the feeling of having that corner turned. All I can do is enjoy watching her clear the hurdles along the way.

Furthermore, Emily is one of my daughter’s close friends. Watching them play is a wonderful reminder of a key contrast between kids and adults. Kids don’t see differences the same way that adults do. Adults judge… even when we don’t mean to. Kids just observe and take it all in. For example, Emily takes some of her meals through a feeding tube in her stomach. A few days after my daughter had played with Emily we were talking about body parts (one of almost any toddler’s favorite topics), and my daughter asked what we used our mouth for. I said that people talk and eat with their mouth. My toddler, eager to correct foolish daddy at basically any opportunity, remarked that not all people eat with their mouth; some people eat through their belly! There was no judgement, no pity, none of that. Just a child noting that her friend did things a different way.

I just want to end with one final note. When we think of role models they tend to think of adults. In general this is true. Adults tend to have the experiences and life skills necessary to teach other people lessons. However, Emily is a role model to my wife and I. She is proof that we don’t pick the life we get, but we do choose how we are going to live it. We can wallow in our “bad luck”, whether that luck is diseases, finances, relationships, etc… or we can enjoy our time here as much as possible. This is a lesson that everyone can take to heart.

If you would like to make a donation to a charity focused on pushing Leukodystrophy research forward here is a direct link… Mission Massimo.

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