The Heart is a Muscle

March 9, 2006

This is Tanner:

Tanner is Baby’s cousin. He lives on the other side of the country, so he has never met Baby. But he’s her biggest fan.

When Baby was still tucked away in Mommy’s belly, preparing for her takeover of Mommy and Daddy’s lives and 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, 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.

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 Baby 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 Baby. Baby will come to him. She doesn’t know about wishes yet, but she’s going to learn.

Tanner’s going to teach her.

———

This week, until St. Patrick’s Day, the Muscular Dystrophy Association (USA) is running a Shamrock Drive. You can find out about it here.

You can find out more about how to support the MDA in the US and Canada here and here.

And to support making wishes come true for children like Tanner, look here.

Please pass this information along. Little boys with weak muscles need our strong muscles. And the heart is the strongest one we have.

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    { 22 comments }

    Kristen March 9, 2006 at 3:55 pm

    MD is awful ~ he is such a sweet boy!

    Thanks for visiting ~ I’m off to check out the MDA links.

    Jezer March 9, 2006 at 9:09 pm

    Oh, the tears.

    What a beautiful boy, and what a beautiful heart he has.

    Mom101 March 9, 2006 at 9:21 pm

    Thanks for visiting and showing the way back here. What a sweet boy and what a lovely way to describe it all. Clicking Mda links stat.

    ninepounddictator March 10, 2006 at 3:31 pm

    He is one gorgeous child!
    I will also make a donation!
    What do you have planned for his visit?

    Her Bad Mother March 10, 2006 at 3:57 pm

    Thanks for the supportive comments. He is indeed a beautiful boy, inside and out.

    When Baby Emilia goes to visit Tanner in BC this spring, there’s going to be a lot of hugging and kissing and playtime and walks and going to see trains (Tanner loves trains). When Tanner comes to Toronto – which is doubly exciting because he will be enroute to DisneyWorld for his Big Wish – there is going to be much more kissing and hugging and playtime PLUS trips to the zoo (which he will love) and to the CN Tower and, of course, to the train station (see parenthetical note above).

    Thanks again for sending good thoughts! Pass along the MDA links – the more support that there is for research, the more possibility there will be that a cure, or even just more effective life-prolonging treatment (every extra day matters when you love a little boy like Tanner), will be found.

    scarbie doll March 10, 2006 at 9:24 pm

    OK, I’m fully sobbing right now. It doesn’t help that I’m PMS-ing. What a cruel thing for any family to have to go through. Stories like this just remind us that life is short and we have to make the most of everyday. But somehow that thought doesn’t make situations like these suck any less.

    Thank you for your comment on my blog. It made my day.

    sherry March 11, 2006 at 9:48 pm

    What a beautiful little boy. Thank you, so much for sharing.

    sunshine scribe March 12, 2006 at 10:38 am

    Thank you for sharing this touching story. I just accidentally stumbled on your blog and I think your writing and your posts are awesome.

    Michele March 16, 2006 at 9:38 am

    I clicked through to your blog via a post over at Sherry’s and this really hit home for me.

    I will take the money we were going to spend on our St. Patrick’s Day dinner out and make a donation. We can eat at home and feel good at the same time :)

    Anonymous April 4, 2006 at 10:28 pm

    Hi. This is Tanner’s Mom and the sister of one fabulous and kind and loving Aunt. I happen to be the kind and fabulous and loving Aunt of the Baby.
    I was brought to my knees, again, with the touching words of a loving Aunty.
    Tanner visits this sit to see the pictures of his cousin nearly every week and can hardly wait to see A Mee Lii aaa – as he pronounces it. And thank all those who have lent a kind word!!

    Love ya Sis!!

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    Lindsay May 11, 2006 at 2:19 pm

    what an adorable little guy!!!
    seems at such a young age he has made an impact of an enormous size.. something many of us wish a lifetime to do!

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    Anonymous October 29, 2006 at 4:17 pm

    My son has dmd.Hes now 12 and its breaking my heart.Hes a very happy chap very caring and loving.All i can say make the most of what u have got hes so precious.xxxx

    Gillian November 9, 2006 at 3:20 am

    It is worth all the pain and terror for one more day. One more day to cuddle. One more day to see something new. One more day to touch and be touched by the people he loves. Even when it is too hard and it is too hard on him and more ground is lost — it is still worth it. Because Tanner is worth everything.

    Anonymous December 11, 2006 at 12:22 pm

    i thought i’d let you know that it’s not always bleak. i was with my fiancé for 7 years before he passed away from DMD. He was 28. It is a scary disease, because you always know the end result, but it’s a life like no other when you know someone who is special enough to show others that this type of disease doesn’t stop them much. He was always hopeful, & that’s what helped all of us … my thoughts are really with your sister & her son, & all of her family. – Kathleen

    Her Bad Mother December 11, 2006 at 12:55 pm

    Kathleen – thanks for that. We really hope that Tanner will have a good many years. We worry about his rate of decline – he’s just six and his mobility has really deteriorated in the last year, and he already needs a wheel-chair part-time. But you’re right that what matters is making the most of his wonderful, wonderful life RIGHT NOW.

    Mrs. M December 11, 2006 at 3:09 pm

    I have many friends with MD and a few that have DMD. I was an MDA Camp Counselor for 10 years and loved every minute of it. I made the most wonderful friends. I hope Tanner gets to experience MDA Camp, it’s by far the most fabulous place on earth!

    Jenn December 13, 2006 at 12:15 am

    What a brave, wonderful, soulful little guy. We will all be thinking of Tanner, with every touch of our own kids. It will be him, too, in that touch.

    donna December 15, 2006 at 2:47 pm

    I just adopted a golden retriever puppy Saturday. The woman who breeds them began doing so for her son to have service dog. Her son had muscular dystrophy, and passed away in March at the age of 21, the same age as my oldest is now.

    I’m raising the puppy as a service dog to do hospital and nursing home visits, and hope to raise and train service dogs myself one day. To help kids like Tanner.

    Thanks for the story. It’s a sad one, and he is a lovely little boy. All the best to all of you, and I hope he has a wonderful time meeting his cousin and on his trip.

    learninghorses December 15, 2006 at 6:30 pm

    I spent a week as a counselor at MDA summer camp, it was a life changing experience, as was my 3 years as an MDA employee.

    Here is how to help make your local Shamrock campaign a success. Visit stores that sell them. If your cashier doesn’t ask you to buy one, offer. Let them know you know someone and to ask them to please ask.

    I used to carry around fun Shamrock pins to give to people selling Shamrocks. They are doing all the work, so it was a nice reward.

    Tell your friends.

    DMD is a terrible disease and has already taken too many lives. You can help stop it.

    Anonymous December 29, 2006 at 12:11 pm

    Thank you to everyone for being a part of this wonderful event! Congratulations on raising $3,200. The countless hours of time and energy that everyone put in to raise these valuable dollars are greatly appreciated. These funds will continue to make a significant impact for thousands of Canadians with neuromuscular disorders.
    Nicole
    Events & Campaign Coordinator
    Muscular Dystrophy Canada

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