The Heart is a Muscle. Use It.
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.
posted by Her Bad Mother @ Friday, July 20, 2007
60 Comments:
I'll go look at the site in a minute. I've read about your nephew before and I'd love to hear more about him.
So, HBM's sister, please, please start a blog. I'd read it. I promise.
HBM: My post about me is going up today. I'm not going to BlogHer, but I thought I'd at least join in somehow. I'll link back to you. Have a great weekend.
Your sister would probably be surprise at the number of blogs out there regarding MD. I've "met" some really wonderful people since I started blogging. People that genuinely care and wanna help other people.
Tanner is a beautiful little boy and the world will suffer a great loss without him.
Rachel - got links? Do any focus on Duchenne's?
HBMS (Her Bad Mother's Sister): I would read your blog. And it's not just needed to educate others about DMD (you don't owe anyone a damn thing!), there are so many reasons-- theraputic for you, good for the world at large, the ability to apply political pressure on a grand scale when throngs of angry parents join your cry for research and support-- these are good reasons, but...
We need more mommies to remind us that their children are not their disease, and when a reader's child shares that disease, to help them feel that they are not alone.
Oh, oh, oh, that any children suffer, simply the thought is enough to make me want to crawl into a ball and never unfurl.
He's a beautiful boy. So beautiful.
Here's why she needs a blog - because other people need her. She'll write about her experience, and other people will read about it and understand better and empathize better and help more and contribute more. It's a great tool, this blogging, it's a great communicator.
Beautiful post HBM.
Another Bad Mother, I am sure I am not alone when I tell you that blogging is SO MUCH MORE than words on a page. It can lift you up, connect you with people you would swear would be your best friends if you only lived a country closer and most of all, helps to clear your head. To pursue it with such a worthy aspiration; connecting parents who share similar joys and struggles, that's a marvelous idea. I'd be there!
I hadn't read your previous story about Tanner since I am a new reader... Your post really moved me.
I had gotten an email about iBake a week ago, and I wondered about it, and read a little about it. I will have to check it out again.
As for your sister... I also think that having a blog would be tremendously helpful to her as far as being therapeutic and being able to relate to other families who are in her situation. There is something to be said about the bond a person makes... even over the internet.
I have been blogging for a year and a half and I have met some wonderful people who can relate to my abusive childhood and vice versa. Having someone with you in the trenches- when no one seems to understand what you are feeling and going through... it really does make all the difference in the world.
I hate that the sweetest ones are those with the most sorrow.
Just wanted to let you know that i signed up for iBakeSale, and set my organization to the the one you mentioned : Parent Project For Muscular Dystrophy Research.
Not one to flog my posts, but you can send here here. That, for me, says everything I can on what blogging can be.
There is nothing about this that didn't make my heart muscle hurt. The world needs her to start a blog to share the wonder of this beautiful, beautiful boy.
Mert, all of you, you're lovely.
xo
Oh my yes. Her bad sister, blogging is a startlingly strong way to communicate with others. You can pour out your heart, and people will listen. You can say things that you won't say in front of loved ones, but, with careful wording, can type up so that it can be read at a later date. Also, sadly, for yourself, to document your son's life. To quickly grab a moment for yourself... to hold onto those moments that escape all of us as mothers: the smell of his hair, a sweet expression, a tender hug... They slip by too fast for every mother. It's the main reason I blog.
that little guy. so loving. you know he has a wonderful auntie.
oh how i cried. it's just so beautiful. i don't mean the writing - though you know i always think your writing is beautiful. i mean tanner's spirit and his love for life and family. i hope many many people join up to donate money for this cause.
to HBM's sister: blogging can do more than you can possibly imagine, both for you and for many others who have nowhere to turn. please consider trying this medium to get the word out and help others.
Sniff. My mascara is running.
Re: your sister and blogging. Maybe there is a group blog she could join so she doesn't have the responsibility of the whole thing. Sounds like she's got enough on her plate, and blogging with others in a similar situation, whether it is MD or parents of children with life-threatening or fatal diseases, would let her focus on her stories and not worry so much about managing the blog.
Susan - I've been suggesting to her that she do it on the Toronto group blog, so there's less pressure, and no maintenance. But it's a good idea, to perhaps find some other parents in similar situations to contribute, team up, etc.
Crying. You might owe me a new keyboard now, HBM. You have a definite will-do from me.
And to HerBadAunt, do it. I have a child with some medical needs (which are still big question marks) and developmental delays, and without the outlet of blogging, I don't know that I could have made it through this past year. The love and support in this Blogosphere are overwhelmingly amazing, and having my own space to process these things has made all the difference. Do it. Please?
I was going to suggest a group blog your sister could follow without the pressure herself to blog.
I will vouch for the cathartic nature blogging and finding other kind hearted bloggers could offer your sister. She has a a mini-community already right here!
I will check out the links as well.
Best wishes and blessings to your sister and nephew.
Much love to Tanner. I know that blogging for me is cementing memories that I might otherwise forget. And if you need it, the blogging community can be a huge support system.
what a beautiful family tanner was born into. my prayers go to you all. will definitely check out and contribute. Thanks for a beautiful blog.
Dear Badsister, you know how the story of Tanner moved many of us. Please lend your voice. It would be a rich one.
I am aching for your nephew, and also for his mama, you and the rest of your family. I hope your sister does start a blog. Not only will it help her reach out to others in her situation but it will also help her keep a log of wonderful memories which she will cherish when he is no longer there. I pray that every moment you and your family has left with him will be one of great joy, love, and happiness.
Her Bad Aunt/Tanner's Mom, there is a wonderful world of suport and caring, compassionate understanding awaiting you out here. I had NO clue about blogging when my son was born. God, I wish I had b/c we spent the first two years of his life virtually isolated from everyone and everything except for hospitals, doctors, nurses, and therapists/early intervention workers. I felt so alone and lost and I worried about my son constantly. No one around me understood or could relate. I just started blogging a few months ago and my whole world has changed! THe bloggers I "meet" have been so supportive and have taught me a lot about parenting and also about myself as a person. Blogging is on YOUR terms...as often as you like or as little as you like. It's wonderful for the spirit. I can share emotions I wouldn't necessarily share with someone I can see face to face -- it's intimidating to be that raw ad real. Online, I can let it out. I heartily recommend it!
Best wishes to you and your family. Your son is a beautiful child and I'd love to learn more about him through his mother's eyes...
My heart and prayers go out to your sister and her family. Especially to Tanner.
I would encourage your sister to blog. It is a was to record the special and the mundane (which should always be cherished) and w way to connect.
I blog about my son and family and enjoy othe parent blogs. Somedays when I get fustrated and I get comments from other who have experienced the same thing it gives strength.
I also love the sense of community out there.
To Tanner's Mama:
If you start a blog, I would love to read it. I think you will find it a good way to talk about how you are feeling, and maybe connect with some other families in the same situation that you are in.
For me, as well, I find I am more focused and in tune with what is going on with my kids....they do something, and I think, "Oh that would make a great blog topic."
Sending lots of prayers and hugs to your strong and special boy.
xoxox
A Mom from NS
HBM - your post moved me as much the second time as the first time I read it. I'm glad to hear that Tanner is still fighting hard, but saddened to hear that he struggle has become more difficult in the last year. It may sound trite, but my heart truly goes out to Tanner and all of your family.
Her Bad Auntie - The blogging community is truly full of such goodwill and support and wonderful, fantastic people. I hope you'll come and let us laugh with you on the good days, offer you a hand or a shoulder (or some of the virtual chocolate that is often handed around) on the bad days, and give us an opportunity to share in the amazing-ness that is Tanner.
We'll all be here waiting for you, when you're ready.
Tanner is a beautiful boy, and I plan to follow your links to see what I can do to help. Warm thoughts to you and your sister.
Her Bad Sister
Please consider sharing your and Tanner's story.
You have already seen how the community came together for Her Bad Auction.
Also as the mom of a baby with health issues I can tell you that reading about your experiences can be so helpful to another mom going through something similiar.
A moving post. Best wishes
Tanner is always in our thoughts. His buddy from TO asks about him often and we are off to sign up for iBake sale just for him.
To Tanner's Mama ... please join us in the blogosphere. Tanner's supporters are already many and there will be much, much support and release and good, good things for you here too. (And I am not just saying that 'cause your sister solicited it ... it's true!)
HBM, I had to think for a while: what can I do.
1. Your sister MUST start a blog. When my friend Gina started her blog about her family's journey with autism, even though there are autism blogs out there, her voice is unique as is her experience, and with only a few posts, she's already gotten good feedback about how helpful her story is.
2. You mentioned a world that doesn't understand or easily accept disability, or Tanner's situation.
This has become an important thing to me.
My way of educating and reaching people is through writing, through books.
I just published Gina's book that is a wonderful tool to help people understand autism. It's written for children and has had a tremendously positive response.
If you and your sister come up with a book for children, to help them understand this, send me the manuscript for consideration.
If it works, I'll get an illustrator and publish a book.
Big (HUGS) for you continuing to get this out there.
Big thanks too.
Gah, you're making me cry again here.
I think that your sister will find that even if she thinks she doesn't need the community, that she will be amazed at how good she feels providing it for others.
To Her Bad Sister:
Please blog. There are so many people out there wanting and waiting to be there for you and support you. And I am sure through blogging you will find many other children like Tanner that possibly he can bond with where they won't have to worry about the unaccepting aspect of the world for a little while.
HBM's Sister: please blog.
Not only will you be providing a source of information, community and comfort to parents of children with muscular distrophy, but you will also be educating the rest of us.
And I think you might be pleasantly surprised by the world you create in your own little piece of internet.
What ever I can do to help convince HBSis I will do it. I've got to check out all your links now and I really hope I can do something to help - you know that's true (and see this, HBSis? I found a fantastic community including HBM that are real life friends and support).
HBM's sissy:
"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 you make your difference."
Your sissy said it perfectly. Let us help you and Tanner.
HBM - What a beautiful post. My heart also aches. I started blogging to get my story out about my son's issues. It has changed my life. I am sure it would for your sister, too, but we all have to find the way that works for us. Perhaps she could try writing for herself alone first and then decide if she wants to share it. At the very least she would be preserving her memories. Maybe the leap to helping others will come later.
Did he make his wish? Post more about him and please - Tanner's Mom - START THAT BLOG!!!
A friend and I were born just months apart. Our families were so close, we considered each other cousins. So when I began walking, his mom became concerned that he was not yet crawling. He soon came to be diagnosed with MD. Fast forward a few years. Doctors told his mom not to have more children because they too would likely have MD. She didn't listen. And they ended up with two more sons - one "healthy" and the youngest also with MD. I have since lost my friend. Fortunately his youngest brother is still with us.
Why am I telling you? So you can tell your sister that she is not alone! I know that my "aunt" would have loved it if she were able to read about another mom in a similar situation as she was. I remember just as a family friend how isolated I felt and realizing as I grew older what it must have felt like to their family. There's something to be said about being able to bare your soul with others who completely understand.
HBM, another beautiful post.
Beautiful boy, brave mama, great post.
HBM's sister - A blog would be wonderful.
Don't do this to me. I'm so behind in reading, especially your site, and when I finally stop by you have a story about Tanner. You know from my previous mails how I feel about this so no further comment needed. My offer from last year is till valid.
Please start a blog about Tanner and his disease. Now if you'll excuse me I think I got something stuck in my eyes which make them water.
AD
tears flow for I am another bad mom( not Tanners mom) but a mom who can understand what it is to love a child that you are going to lose, I have walked the walk, I found your blog while out on a blog walk and well today it made me cry but that is good, and dear sister non blogger, take it from me blogging so helps the heart, it helps the fear, it helps the isolation, I so know that walk as I raise a child who too is unique.
Thanks for this repot!
HBM: I swear to god that the project that I proposed doing is almost finished. I'm giving myself to the end of July to get it done because you've waited long enough. I'm really sorry it is taking so long.
I hope HBMS likes it.
Many hugs and prayers. I can very much relate to this story.
www.prayingforparker.com
Hi HBM, I'm new here and have really enjoyed your blog this evening.
To your sister:
You will be amazed at how easy and even cathartic it will be for you to start a blog. I inititally started a blog about my son (born with disabilities) to keep my family and friends around the U.S. updated on his progress.
What I didn't plan on (and was really amazed by) is the community of parents I found (who found me!) who had children with some of the same disabilities. They have been a constant source of support and I've been able to help them through some tough decisions as well.
It will change the way you look at life in ways you cannot imagine.
I've been thinking about little Tanner tonight.
Sending him love and prayers. Just because he brings you and Wonderbaby joy.
Hugs (to all).
Your post was incredibly touching. I was previously unaware of DMD and the implications on both children and their families. Tanner sounds like an incredible boy and very loving and devoted to family. DMD is such an amazing cause because the effects of it are so devastating. I hope other people jump on board and support DMD. iBakeSale was created just for this purpose, to give people an easy and free way to support important causes they are passionate about. My prayers go out to you and your family.
Jonathan Treiber
CEO iBakeSale.com
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
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
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.)
"Too much".
I hate when I commit one of my biggest pet peeves in print.
Duh.
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...
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
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.
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!
Great work.
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.
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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