As everyone who reads this blog (like what, one person? I don’t even know. Or really care all that much) should know, I read. A lot. And ninety-seven percent of the time, I read books.

However, the last few days, I have spending my time swamped in a different media. The wonderful world of blogging. But first some background?

I work at the Arc of Whatcom County.

www.arcwhatcom.org

The Arc is an organization that serves to provide support and connections to resources for people with disabilities. It’s an amazing goal to have, and the people there have all sorts of empowering and tragic stories. The strength of my coworkers amazes me, and I know I don’t see the full picture of what their lives are like.

(Oh and just as a side note for clarification, the Arch umbrellas outward and hosts organizations and support groups within it’s structure. I work with the Parent Coalition, which is basically a parent support group, information hub, and activist center. I design their newsletter.)

Many of the women there (not to be sexist, but the majority of my coworkers are female) are parents to children with disabilities, or connected to that community in a very close, personal way. I admit, sometimes I feel a bit like an outsider. I just found the editing job through Western’s work website. But that’s a different story.

There is a woman, Amy, who comes in a couple days of the week, jokes with us, “mom”s me (I’m by far the youngest employee, and those with children tend to “mom” me. I think it’s sweet, if not just a tiny bit patronizing), talks to other parents, and then heads out for the day. I’ve heard her talk about her son, but I haven’t heard their story. I have seen her type on her blog, though, and talk about it, so one day I tried to find it.

What I found turned out to be incredibly…

I’m at a loss of words for how else to describe it.

What I found turned out to be incredible.

Yes, I’ll admit, I’m an emotional person. If alone or with people I trust, I tend to cry easily. Ignoring that, I cried throughout reading the story of her son, “Mighty” Max. I know any summary of their story won’t come close to doing it justice, but I’ll try, for the sake of this post.

Amy gave birth to Max two months prematurely. Her water broke at 28 weeks, but fortunately Max managed to wait for the 32-week mark to be born. His lungs weren’t as developed as they should be for a 32-week baby, however, so he was in pretty rough shape. As they found it, the “shape” turned out even worse.

Max was diagnosed with CHARGE syndrome. For those that want to find out more about CHARGE, you can google it pretty easy, or check out their website

www.chargesydrome.org

To get a very loose understanding of it, however, here’s an excerpt from that website.

“Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication.”

Max needed multiple surgeries, including open-heart surgery, during his first few months, and spent the first six months of his life in a hospital.

Reading Amy’s blog about being a single (her husband left her [I believe] during her pregnancy. I don’t have the details, and wouldn’t write about them if I could, but I know it is extremely messy situation), full-time caregiver for her son is a rollercoaster ride. I was sucked into her story more fully than any book I’ve read. I was cheering for him for every milestone he accomplished, and I cried every time she posted news of the death of another baby with CHARGE syndrome.

You, too, can read her story if you want.
The First Blog, covering 2005-2006
www.maxupdate.blogspot.com/

and The Second Blog, covering 2007-present
www.mightymaxupdate.blogspot.com/

As I started to write this blog, I wasn’t sure what direction I wanted to take it in. But I think what amazed me most about Amy’s struggle was the financial aspect. I was amazed at how unsupportive the government was, how unsupportive every institution she had to deal with was. The individuals she encountered, for the most part, tried to help and support her. Yet the laws, restrictions, and requirements in place all work against her getting the help she needs.

I hear about this a lot from my supervisor, Carol (no, not my sister). I am no where near any type of expert-I don’t think I even count as properly informed, and yet even I know that the system in place is not one which supports parents who have children with any kind of special needs. Restrictions and regulations have been instated to protect the budget from potential “gold-diggers”, but this only serves to make it more difficult for the parents who need that financial support to access it. It’s sad. It’s really just sad, and all I know how to do is offer my support to those who are fighting against these ridiculously impossible and degrading demands and to those who fight to protect the rights of anyone with any kind of disability. And so far, that means making fabulously beautiful and accessible newsletters.

It’s also to make use of what I’m learning, and to urge anyone, ANYONE who reads this and feels a twist of anger at the injustice of it, to do something about it. Learn about what’s going on-I’m not a great resource for that, as I’m trying to educate myself as well, but I can point you in the direction of some cool resources.

Learn about it. Learn about the way your government works. Learn about the way your government treats people. Not just “normal” people, and not just people with disabilities. But how your government treats people. Learn how your government envisions peoples’ needs. You might be surprised. You might not, but regardless, you’ll learn. And, if you want to do something about it, you’ll know what you want to change.

***And on a separate note, I want to say that even though I cried a lot, I found Mighty Max’s story to be incredibly motivating and uplifting. It gave me a lot of perspective about everything I’m going through, and made me less scared of the whole process. A two-year old and his mom are going through the unthinkable, and so many of their posts are full of smiles, laughter, games, and toys. It’s pretty, for lack of any better word, mighty.