The Heart is a Muscle. Use It.

July 20, 2007

Many of you have read this before, but I want you to read it again. Because I want you to help.

This is Tanner:


Tanner is WonderBaby’s cousin. He lives on the other side of the country, so he only sees WonderBaby very infrequently. But he’s her biggest fan.

When WonderBaby was still tucked away in Her Bad Mother’s belly, preparing for her takeover of Her Bad Parents’ lives, and also the Known and Unknown Universe, Tanner was preparing for her arrival.

He designed an airplane, so that he could fly to Toronto to visit her, and then bring her back to British Columbia so that they could play together there.

Unfortunately, he kept the drafts of his designs on the kitchen wall, where they were unceremoniously erased by Someone Who Didn’t Understand (another bad mother). Crayon-On-Wall, it turns out, is an unreliable medium for creating Important Documents.

But Tanner had a back-up plan. He would make a wish. He would wish himself to Toronto to visit his baby cousin.

And as it happens, Tanner does have a wish to use, however he wants.

Because Tanner probably isn’t going grow up, and little kids like Tanner get to have at least one wish that will come true, because there are only so many dreams that can be pursued and fulfilled in a lifetime that only stretches as far as childhood.

Tanner has Duchenne’s Muscular Dystrophy. It’s what is referred to as a ‘degenerative muscular disorder.’ What this means: Tanner’s muscles are gradually wasting away. Soon he’ll be in a wheelchair. Eventually, his muscles won’t work at all.

Lungs are muscle. So is the heart. One day, Tanner’s heart and lungs will stop working. And then he’ll die.

DMD is a genetic disorder that only (with very rare exceptions) affects boys. And it’s the littlest of boys – the diagnosis usually comes when a child is between 2 and 5 years of age. Boys with DMD are lucky to live into their teens; only in the rarest cases does such a boy reach adulthood. DMD always kills. There is no cure.

Let me repeat that: It always kills. There is no cure.

Tanner will die. His parents will lose their son; I will lose my nephew; Wonderbaby will lose her cousin; the world will lose a bright, bright light.

A wish is a very small thing to give such a child. But it’s also everything: it’s magic, it’s dreams, it’s the promise that if you want something badly enough, sometimes, just sometimes, you can reach that thing. It’s something to look forward to. It’s hope.

And our precious Tanner, the little boy who loves WonderBaby with all of his bravely pounding heart, wanted to use his one special life-affirming wish to meet her.

We told Tanner not to use his Big Wish to come meet WonderBaby. WonderBaby came to him. She doesn’t know about wishes yet, but she’s learning.

Tanner’s teaching her.

*******

Postscript: I wrote this last year. In the year since, Tanner has grown and loved and smiled and laughed and brought much, much joy into our lives – and received much, much love from you - but he has also begun using a wheelchair, and taking more steroid medication to help his muscles hold out a little longer, and he has struggled, hard but often futilely, to be accepted in a world that often doesn’t understand or accept disability, or the prospect of death.

I’m re-posting it now, for a few reasons. For one, I’ve found (through PBN) a new, easy way to support the organizations that are trying to help kids like Tanner, the organizations that are holding out the only hope that we have for Tanner’s future. iBakeSale donates a specified portion of whatever you spend when you shop online through them (no cost to you; details here). To help Tanner, go to iBakeSale by following THIS LINK, and sign up and and add a muscuar dystrophy organization to your charity list (I’ve signed up with the Parent Project For Muscular Dystrophy Research. Just search for Parent Project if you want to help. You can, of course, add any charity of your choice, but my purpose right now is to get you to help me to give Tanner a future.)

For two, I want you to help me to convince my sister to start a blog for parents of children with muscular dystrophy. She’s isolated, as are many other parents in her position. And, she’s at a loss as to how to really pursue support for Tanner’s cause. I’ve been pitching blogging hard, but I’m only one voice (and, too her, a sometimes grating voice at that) I’d love for her to hear it from the blogging community: let her know that there are thousands of loving hands and warm hearts out here, and that we really do strive to make a difference, and that we can help her make her difference. Just leave a comment.

For three, if nothing else, I want you to please pass this information along to anyone who you think might help. And I want to give another reaosn to hug your children. Tanner is a little boy with weak muscles, and he needs our strong muscles to do his heavy lifting – but so do all children, in their way, need our strong muscles. And the heart is the strongest one we have.

Use it.

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    { 61 comments }

    AmandaD August 26, 2007 at 3:04 pm

    I sent Tanner magnets from the Adirondacks and shared his story with my office. I am grateful for the update and would echo your push for a blog. A friend wrote to let me know his daughter had been diagnosed with Rhett’s Syndrome. I get countless hits from people seeking information and support. She would receive as much as she’d be giving.

    We’ll work on another something for him and send our virtual hugs to everyone who loves him

    Anonymous August 11, 2008 at 11:13 pm

    I wonder if your sister might be interested in one of the caringbridge sites… maybe the “beginner’s blog”. Our good friends recently suffered the loss of their daughter to neuroblastoma (cancer). I believe they met many online friends and followers through her journal.

    http://www.caringbridge.org/visit/alexaaigner

    Loralee Choate August 25, 2008 at 12:21 pm

    This is for your sister:

    Hi, my name is Loralee. You don’t know me from Adam, but I really respect and like your sister.

    I imagine that she knows you very well, and so I am going to take it that her option is that this blog would help you, given your personality.

    I lost my baby son to SIDS in 2003. I knew nothing about blogs back then. I didn’t start blogging until 2005 and I can tell you with firm assurance and no exaggeration that it helped save me.

    The love and support of the internet is an amazing thing to witness. Sure, there are bumps on the road and negative things, but those are blips on the radar in comparison to how much help, support and kindness that I have received.

    I needed other mothers who have lost little ones. I needed people who hadn’t lost children but who were there to support me. Or just to listen.

    Plus? It’s not in your everyday life. It is a place to run to when day-to-day realities of everything are just…TO MUCH.

    NOTHING really makes it better, but chipping away at the big load that makes up my experience is a LOT less big and horrible when you have people to laugh and cry with.

    And?

    I’d read it.

    Much love,

    Loralee

    (Just my 2-cents.)

    Loralee Choate August 25, 2008 at 12:24 pm

    “Too much”.

    I hate when I commit one of my biggest pet peeves in print.

    Duh.

    Kristen August 25, 2008 at 2:50 pm

    My heart, once again, is in my throat from reading one of your posts. I’d like to just sit back and pretend I didn’t read any of this, but I can’t… it is stuck in my mind and I want to help. I can’t even imagine this pain…

    Dana August 26, 2008 at 10:17 pm

    I’m sitting on my sofa bawling after reading this. Diseases are so ignorant, picking on someone so young and precious. May love, hugs and prayers your family’s way. You guys are going through so much. Just know that there are many people out here making a virtual net for you that will catch you when you need it.

    xoxo

    Maia August 26, 2008 at 11:50 pm

    How is Tanner doing now? I agree with the other commenters – your sister should start a blog. It can help build community instead of isolation. Thanks for sharing. Also, thanks for the links to the donation / charity sites – I hadn’t heard of that one before.

    Lee Laughlin August 28, 2008 at 11:49 am

    Yeah, I’m late to this party, sorry, found you via Motherhood Uncensored.

    My kids (and I) have albinism. It is a genetic condition. I know several parents who have stared blogs to cope and share information. I knew what I was getting into when I got pregnant, most people don’t expect a child with albinism. I enjoy reading their blogs as they make their journey through the process.

    At the very least, she should set up a Google Alert, so that she can receive updates when info about DMD is published.

    Good luck to her!

    Wendy November 10, 2008 at 5:22 am

    Great work.

    Perksofbeingme January 6, 2009 at 8:09 pm

    I have just started reading your blog recently and I have just seen this post for the first time. I work as a counselor for Muscular Dystrophy camp. I understand how hard this is for everyone in the family. The hardest thing about working with these kids is knowing that they will die all too soon. In the six years I’ve been with MDA, I’ve lost 6 kids- all under 21. It’s killer. Know that I am thinking of y’all.

    Also, does Tanner go to MDA camp? I don’t know if BC has one but I know in the US there’s a camp in every state (and in some states there are several camps) where for a week kids with Muscular Dystrophy get to go to camp like every other “normal” child. It’s a great camp, and I know all the kids I see at camp, say it’s the best week of their lives. Keeping Tanner in my thoughts.

    lemonade January 23, 2009 at 12:44 pm

    I know exactly what you’ll are going through…

    My cousin is ten and has the same disorder, they diagnosed it when he was six, he refuses to use a wheelchair because he’s embarrassed, he hates leaving the house, doesn’t talk much..

    Its heartbreaking to see him waste away…

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