Here’s something about me that you might not know: two years ago, I unexpectedly underwent, over a period of many months, a gruelling series of genetic tests and counselling sessions. This was to see if I carried – as my doctors were very nearly certain that I did – the gene that causes Duchenne’s Muscular Dystrophy. The gene that might explain the years of debilitating muscle pain, my unusually weak lungs. The gene that would almost certainly cripple and kill any boy that I might give birth to.
The gene that has crippled my nephew, Tanner. The gene that will kill him.
When the geneticists couldn’t find the gene in my DNA, they were surprised. My doctor was surprised. My husband and were relieved. I sobbed from the relief. I sobbed for a whole afternoon, from my relief at having escapeed this burden.
My sister didn’t escape. My nephew didn’t escape. Tanner has DMD, and he is crippled, and becoming more crippled with every passing wee. He wears leg braces, uses a wheelchair sometimes. Soon he’ll have to use it all the time.
He is six years old. His muscles have been wasting away since he was about two years old. He will die before he reaches adulthood.
There’s no cure.
I have been blessed with many privileges. But that privilege doesn’t change the fact that a huge part of my life is defined and circumscribed by my nephew’s condition. By the fact that he is disabled and dying, by the fact that my sister will lose her son, by the fact that my family will always live in the shadow of this grief.
You didn’t know this about me. That’s okay. I don’t talk about it much. Periodically, I ask visitors to my blog to check out the links for the Canadian Muscular Dystrophy Association, and the MDA in the States, and other organizations. I ask them to maybe think about donating some money, or at least to think about speaking with their children about being nice to children who aren’t as able as they are, children who walk funny or talk funny or maybe use braces or wheelchairs. I keep the links on my sidebar. Please, check them out.
I don’t talk about it much. It’s not easy to talk about it, it takes a lot of emotional energy to talk about. And, too, I think, it takes a lot of emotional energy to read about. It’s a downer, I tell myself. Nobody wants to read about this. Sometimes, I think about writing about Tanner, and then I stop myself. Too hard. Too raw. I edit. I pull stories.
And I regret it. Because if there was one point made in the fracas of this past weekend’s post mayhem that I can totally get on board with, it’s that we need to be talking about and reading about things that make us uncomfortable. We need to be raising awareness about the things that matter to us, and finding out about the things that matter to others. The things that we can’t always tell just by looking at them.
You wanna know another reason why I regret pulling my some of my writing impulses? Because any time that I give in to those impulses, my community responds. They do not recoil. They do not click away. They leap in. When I first posted about Tanner, my blog traffic increased to a level that it never had before. When I wrote about my heart breaking over his struggles in school, about his exclusion from play groups and birthday parties, about the teasing that he was being subject to, that traffic exploded. New readers came forward in droves. Dozens of people sent me personal e-mails. Some of those with firsthand experience living or working with disabled and terminally ill children asked me to forward their their e-mail addresses to my sister.
I still get comments on that post. I still get e-mails about it, and the other.
What is easy to forget about the momosphere, amid all of the anxiety about blogrolls and ads and Technorati rankings and celebrity, is that this community is, through and through, a big-hearted community. An empathetic community. A community that is supportive and caring. A community that becomes outraged at hurt and injustice. It is a community, as I say again and again, the best kind of community. Not perfect, not by far, but among the best that I’ve seen or heard tell of.
My community.
You might not know this about me, but I love it.
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This post is my contribution to my own writing prompt for Calls to Action. I asked bloggers to write about a cause that is important to them , or their personal experience of trying to make a change or a support a change in the world. It didn’t have to be about charitable "causes" – marches and drives and ribbons – (tho’ that was welcome) just about the ways and means by which we’re all trying to make a difference. It was a prompt to write about going beyond writing. The response has been overwhelming (I’ll be posting the links this week) and is evidence, I think, of the big big heart at the heart of this community.
(You can still get involved, if you like. Read more by following the link above. Just write a post and leave a comment for me when you’re done, over at HBM.)
Your sister and nephew are incredibly lucky to have you in their lives. Your love for them is so overwhelmingly obvious. So please don’t pull posts because it might ‘bring your readers down’. We’re all here for you. And for those that need hope and more research and more funding to fight these terrible things.
Now I’m off to hug my little one as well.
I hope the parents of the children in Tanner’s class got on board with this. I hope they were sensitive to his situation and tried to teach their children appropriately.
I cannot imagine what is going on in his parent’s hearts.
How aching.
I don’t think I ever mentioned it on the blog but muscular dystrophy runs all through my sons’s dad’s family.
His mother and her children were okay but at least a dozen that I can remember were affected to one degree or another. He had two aunts in wheelchair.
There are different types and evidently this one was more gradual. The end result was the same.
I watched my boys very carefully and my son watches his kids but the gene may have missed us completely.
I’m so sorry about your nephew.
Thanks for sharing this sad story and telling us about something we can do to help, Catherine. The “politics” of the blogosphere aside, I’m with Gloria. If blogs don’t become calls to action, then they’re not really useful are they?
This is a sharing and supportive community.
Give in to those impulses.
My heart goes out to Tanner and your family.
Julie
I don’t want to make this about me so I will just say that I find stories like that of your nephew so painful it takes my breath away. That said, please tell me of something practical that I can do to help him or children like him. Point me in the right direction. I’m serious. I will send money, write a letter, donate something. Whatever. I want to help.
We’ve talked about this – but your post on him at HBM was the first of yours I ever read.
The pain is unimaginable, really. BUT, this is the forum to express it. Thanks for sharing that.
Wonderful post. I completely get what you are talking about when you speak of being uncomfortable with some posts, I always think who wants to hear me talk about depressing stuff. But then the reactions and support ARE overwhelming. I’ve said this once, I’ll say it again “blogsphere, I’m so glad I found you”.
This call for support between sisters is one of the best things ever and you’ve got my support right here.
I think it is wondeful to learn about who a person really is, and part of you is consumed with this because of your love for Tanner, so I love reading it. It opens a little window into who youa re that I would never get to know if you left this out. I wish you didn’t have to write it and I wish everything was totally fine in your life and I especially wish children never ever ever had to get sick, but since that is the way life is sometimes, it is wonderful to see just a glimpse of how that really feels and possibly what I can do to help. That is the reason I am writing my story of my cancer. It is hard and frustrates me, and may take me forever because it is sometimes painful to remember, but maybe it will help someone else who is going through something similar to see they are not alone. Maybe it will help me to get over it. Who knows, I just know if I feel like I should write it, there must be a reason out there somewhere.
I still need to write my Call to Action post — which is about the importance of genetic testing (with a focus on my specific disease, Gaucher, but also to highlight so many others).
Thank you for sharing your experiences and Tanner’s story. It is so powerful when spoken, even though I know it is painful to write about.
Catherine thanks for sharing this with us. You are right about this community and the support it provides. I feel very lucky to have found you.
i’m glad you opened up a little bit and shared this. i’m sure it’s not easy for you to do.
there’s nothing more heartbreaking than illness in children. i’m sorry that you and your family are going through this.
I went though genetic tests and counseling during my first pregnancy. It was one of the hardest periods of my life. Of course we were lucky and I am incredibly thankful.
When you write about Tanner, my heart explodes. I think your call to action is extremely important because in sharing thoughts and experiences, it makes others aware. We are reminded to keep our hearts open and to teach our children not to be afraid of someone who is different. They are loving children with remarkable personalities and they should never be excluded.
Your words, all of them, from all of you, warm my heart. Thank you.
(And, thank you for overlooking the typos. I wrote it quickly, I didn’t review or edit it before I hit publish. I wasn’t up for re-reading my words.)
We are here to read and support.
Writing through those intensely raw feelings about Tanner is likely painful and scary. But please know that through your writing and sharing his story and your story and wonderful organizations that help children and their families living with MD – you are truly making a difference. Making a difference in the number of people that are praying for Tanner and the number of people that are spreading the word and thinking of you and he and your whole family.
This community is one that is loved by you and it loves you right back. It is these authentic posts that I love most about you.
There are things that I have wanted to say to you about this, and I pull back – I’m not sure why. Discomfort, embarrassment, not wanting to say the wrong thing. And I worry that this will be an obnoxious thing to say, but I’ll say it anyway: I almost never feel that God is telliing me anything specific, but ever since I read about Tanner, I’ve felt that He wants me to pray for him and for the children and their parents in his community. So I have been. You’re all in my prayers.
P.S. I just “previewed” this comment and found a typo. I came back here to correct it but then decided not to, because one thing that moved me about your post today is that there are typos in it – typos that testify to the shaking hands, the beating heart. So I’m leaving mine in, because it represents the eyes blurred with tears.
While my heart aches for Tanner, his mom and you, I keep thinking “Thank God for Catherine.”
Because not only are you increasing awareness for MD, but you are increasing awareness of all children who suffer from an affliction, mutation or disease that makes them different, makes them special.
And mostly, because Tanner needs all the support he can get. And you, my dear, are obviously doing that.
I hope Tanner’s life is full of wonder and amazement. Joy and love. It will carry you all through the dark times. I would know.
So overwhlming to think child being terminal ill… thank you for sharing the important story of their struggle. It sure forces me to put my trivial woes into perspective. It calms me to move past the daily frustrations of being the mom of four and will gives me the headspace to slow it down tonight for an extra snuggle with the kids to relish how blessed we are. We need to support those who carry these extra burdens any way we can. The smallest of gestures can ripple into great relief. My thoughts are with your precious nephew and family.
I applaud you for writing through the pain. As they tell you if you ever take a memoir class, that’s when you become a true author. It’s easy to make jokes about our cute kids or speak in political theory, but to open your heart to the world with something so raw and personal – well kudos to you, lady.
And you’re right, we’re here to read. And support.
I can’t even begin to imagine how difficult this must be for you and your loved ones. Tanner is a beautiful child – it’s so difficult to comprehend how such bad things happen to innocent children.
Thank you so much for sharing. It has helped me to gain perspective on some very trivial problems in my own life.
I am counting my blessings as I write this response. And I’m saying a prayer for you and yours.
Joanne
Wow. I had no idea.
Thank you so much for sharing this. It’s so hard to hear but it must be said. I pray they find a cure.
My love to your family and to the beautiful Tanner.
Tanner is a beautiful boy, and I am heartbroken that he – or any other child – is afflicted with a terminal illness. Of all the injustices in the world, the suffering of children is the worst. I’m so sorry. Thank you for sharing his story with us.
Two of my parents’ best friends lost their children — one of Cystic Fybrosis and another of something undetermined. They will never be the same, and they do, indeed, live in the shadow of that grief. We all do. Their children were also my friends. I visited Stacey in the hospital, as she waited for a lung transplant. It was the last time I saw her.
Other friends of my parents have a son with brain cancer. He’s undergone a lot of chemotherapy and is now suffering a relapse. He went to a special camp for ill children and had a wonderful time. He’s lost all of his “healthy” friends….
thank you for sharing Tanner with us. I am so sorry and so saddened that you and your family, and this beautiful boy, are going through this. We are, indeed, here for you — to listen anytime you need us.
Hey there,
My own neice had leukemia at 3 and was only given a 30% chance at survival. I have seen first hand what terminal illness does to a family and I want you to know that you have my heart right now. My neice was lucky. After receiving a bone marrow transplant (at 3 for #$%*-sake!), she pulled through and is now a beautiful 16-yr-old girl but so many of her friends didn’t make it and so many of the families of these lost children remain close to my sister and to my neice and will always be close to them.
What a beautiful boy.
What a tragedy.
Send love to your sister.
I will hug my healthy babies and be thankful.