Musings of a Marfan Mom

January 7, 2020
by marfmom
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A Tale of Two Teachers

At my high school, career day was in 11th grade. I knew I wanted to do something in the health care field…I might have still been thinking of being a doctor at that point? In any case, my English teacher came to me and asked if I’d heard about genetic counseling. She told me she thought I would be good at it. Truth was even though I’d seen one as an 8 year old, I didn’t know much about what they did. One of us arranged for me to shadow a genetic counselor for career day at Nationwide Children’s, and I ended up spending some of the day with the genetic counselor who diagnosed me with Marfan syndrome (who as a child had left a very negative impression on me, a great how-to for being a poor pediatric practitioner).

By the end of career day, I knew this was the path I wanted to pursue. I chose my undergrad institution in large part because they offered a Masters in Genetic Counseling program. I had it all mapped out before starting college.

Then freshman chemistry happened. I passed, but by the skin of my teeth. My thoughts immediately went back to another teacher, this time my 12th grade physics teacher. He had pulled me aside after class one day to tell me I shouldn’t pursue the sciences (never mind that I’d always been an A science student, outside of physics), and when I said my intent was to study biology, he replied “well, that might be ok since it’s not a hard science.” He asked where I was intending to go to college. When I told him, he referenced another graduate from our high school who had left that university after their first semester and told me “you know what happened to (other student)…you’re just like him,” before suggesting I look at some less prestigious state schools instead.

So I looked at this C grade and thought, “I guess he was right, I’m not cut out for this.” I told myself I’d never make it as a genetic counselor. I switched majors. Eventually I ended up in psychology, and went on to earn a Masters in Public Health.

That’s shortly before this blog started. I had kids. They had complicated medical needs. We adopted more kids. They had complicated medical needs. Other than some freelance writing for awhile, I haven’t been back to work. I have a beautiful, very busy life and I still get to be involved with health care through my Marfan Facebook group and my volunteer work with The Marfan Foundation. I’m lucky!

A few things happened in this past year, however. The first was a conversation with a doctor I admire, who told me I should go back to school. The second was attending the NORD Living Rare Forum in June, which was a remarkable experience (and the next one is in CLEVELAND if you want to come). And the third was a conversation with THE coolest genetic counselor in the world. These all led to, at the end of July, me casually mentioning to Mark that I was thinking of maybe, possibly, someday going back to school for my Masters in Genetic Counseling.

For some reason he thought this was a good idea, said someday might as well start now, and within a couple weeks I’d figured out the pre-reqs that I still needed (there are 4), applied and was accepted to the local community college, and registered for my first class: biochemistry. If I was going to fail at this class, and therefore at becoming a genetic counselor, better to do it at the beginning of my planned coursework. I’ve been so scared to tell people that I’m back in school, because what if I really am not cut out for science and I fail and then I have to tell everyone that I failed?

Grades are out though, and I passed! Not only that, but I got an A! I will say that is in huge part to Mark, who helped teach me the material (my online class came with zero instruction). I really have the best husband!

The moral of this story is teachers, please choose your words carefully when advising your students. Don’t underestimate the impact you can have on a student, for better or for worse. Even if you never know the end result, I can tell you that they take your words to heart.

My plan is to take a class each semester for the next 3 semesters (except summer) and then apply to graduate school. If I’m lucky enough to get in on my first try, I’ll begin when Miss E goes to kindergarten. But, I also know that life doesn’t always go according to plan, and this plan may take longer than I think. So, we’ll see what happens, but this is me putting my intention of becoming a genetic counselor out to the universe!

The summer between 11th and 12th grade, with friends
Brothers

December 30, 2019
by marfmom
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You Don’t Deserve a Pat on the Back

I was mindlessly scrolling through Facebook a few days ago when I came across an article in my feed from Connecting for Kids, a nonprofit in my area that serves families of kids with disabilities. The article was touting their “Kind Kid” award, given to “the most compassionate kid nominated in Northeast Ohio.”

Now, I’m not linking to the article because my issue is about more than this situation. The gist though is that the student winning the award, A, was nominated because he is friends with a kid with down syndrome, B. That’s it. A is friends with B, and because B has down syndrome, that makes A the most compassionate kid.

The award was given at a school wide assembly during “inclusion week.”

Let’s break down why this is so gross.

The only notable thing about this friendship is that one of the students has a disability. That is the entire basis for the award.

Thus, what the award is saying is that it’s so unusual and special when a non-disabled person befriends someone with a disability that it’s award-worthy. And why? Because disabled people are harder to be friends with or not considered as worthy of friendship than non-disabled people.

That idea is ridiculous! People with disabilities have lots of qualities that make them great friends, regardless of whether they use wheelchairs, have an intellectual disability, or don’t speak. And, people without disabilities can have qualities that make it challenging to be friends with them, like being racist, bossy, or whiny. We don’t give out awards for being friends with those kids though, do we?

It’s even more harmful that this award is coming from an organization that purports to serve the disability community. Such an organization should be amplifying disabled people’s voices as to why such “inspirational” stories and awards are hurtful, not propagating them themselves.

Some of us tried to point this out on Connecting for Kids’ Facebook page, between comments and one mom sharing this article by Ellen Stumbo. In response, the admin deleted the entire post. I’ve waited, but have not seen them address the issue further. So, it appears that instead of engaging the community meaningfully about the concerns over their award, they’re choosing to try to brush this under the rug.

And to be clear, I don’t care about this particular story. Every person involved could be fine with it, but the fact that an award was given is still wrong, especially by a disability-friendly organization.

Please join me in calling out these sorts of things when you see them and, if you feel so moved, in asking Connecting for Kids to cease giving this award in the future.

Brothers
Two of my kids with disabilities who, upon being asked how they would feel if their friends got an award just for being friends with them, were first incredulous at the idea and then disgusted.

December 15, 2019
by marfmom
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A Marfan Themed Birthday Party

Yes, you read that right. J turned 9 recently, and decided he wanted a Marfan-themed birthday party. That might sound a little…morbid? to you, but it fits our sense of humor. Marfan isn’t going away, so we might as well have some fun with it and educate!

I’m pretty proud of how this turned out! I just wish I’d gotten pictures of all of it. We had the party at the local fitness center pool. All the food but the pizza corresponded with body parts that are affected by Marfan.

I found this great Doctor Party pack for dishes. We used grapes for eyes.
The bones are made of pretzels and mini marshmallows, dipped in white chocolate.
Easiest blood ever!
I’m proud of this cake! It’s a two layer white cake with cranberry filling and topping. I used a dairy-free cream cheese icing.
Hard to see, but we had Mandarin orange pieces to represent lungs, and cranberry salad for connective tissue.
Not the greatest photo, but the goodie bags had pens that look like syringes, and pens that are shaped like bones!
This photo booth frame is actually left over from our local Walk for Victory a couple years ago. I’d forgotten we still had it, but it was perfect for the kids to take silly pictures with!
For our craft, the kids decorated “Marf Men” (gingerbread men), an idea by my friend Ashley. Here’s R with one of hers!
We have the coolest indoor pool! J loves that this is a physical activity where he can be equal to his peers. It’s why he picks here for his party each year.
Miss E and I hung out poolside. She is getting so big!
He was SO happy!

Have you ever done a Marfan-themed birthday? Would you?