Her Bad Mother

Wednesday, January 21, 2009

The Invisible Boy

He wants to be invisible, she tells me. When we're out he clings to me and turns his face into my side and it's like he wants the the whole world to look in the other direction, away from him and his weakness and his wheelchair.

She sighs. Your sister told me, when they got back from DisneyWorld, that he was unhappy in the crowds, that he was embarrassed when they couldn't get him onto the rides, that he just wanted to hang behind everyone else and hide.

He knows, now. My mother chokes on her words. He sees himself. He sees what he thinks everyone else sees. And he hates it.

I have no response. We whisper our I love yous and hang up the phone. I have no response. I just cry.

When Tanner was diagnosed with the condition that will kill him, he was four years old. He was a boisterous preschooler with a big smile and a habit of barreling at you at top speed and knocking you down, the better to wrap his little arms around your neck and wet your cheeks with slobbery kisses. His gait was a little funny - he walked on his toes, like a wannabe ballet dancer, and lost his balance, a little, sometimes, going up stairs. But nothing that made him seem anything other than the adorable cyclone of a four-year old that he was.

But then it became clear that he wasn't walking as well as other kids his age. A caregiver commented on the unusual shape of his calves. He continued walking on his toes. A physiotherapist was consulted. Then a doctor. Then the geneticists. And then, one evening, I got a phone call from my mother, telling me that they'd finally gotten the results of the tests and that Tanner had something called Duchenne's Muscular Dystrophy. What's that? I asked. And then my mom burst into tears, and said something incoherent about muscles and dying and I felt a chill roll down my back, I felt it run like a stream of cold water from the base of my skull and down along my spine and, with the phone tucked between my ear and my shoulder and my mother's cries echoing across the wire, I brought my fingers to my keyboard and Googled Muscular Dystrophy, Duchennes and the chill turned to ice. He would die. His muscles would disintegrate and he would die.

No cure. No hope.

For the first year, it was easy to wrap ourselves in platitudes like live for the moment and seize the day and rejoice in the time that you have because Tanner didn't change much, not at first. His walking got a little more awkward, but he was still a rough and tumble force of a little boy who loved nothing more than fierce hugs and cuddle-wrestling. To anyone who didn't know him, he was just another ordinary child. No clock ticking over his head, no enemy within. Just a boy. But then he started undergoing steroid treatments, which affected his behaviour, and his physical condition deteriorated and continued deteroriating and word started getting out among neighbours and school-peers that he was sick. Disabled, obviously, but not only that: disabled, and marked for death. Some children started teasing him, and he began to understand.

That was over two years ago. That was over two years ago, and Tanner has since learned - we have all learned - to cope with the reality of his illness. That is, we think that we have, until we see Tanner recoil in embarassment from his wheelchair, or refuse to make eye contact with other children. Or tuck his head against his mother's thigh at DisneyWorld and insist that, no, he doesn't want to see if they can accommodate him on that ride, or this one.

This, this is a terrible heartbreak. We imagine, we believe, that all sick or disabled (no, he is not differently-abled. He is 8 years old and he can neither run nor play sport with other children. He experiences his condition as a disability, something that prevents him from doing that which he most wants to do) children bear their conditions nobly, and with good spirits. We watch the TV shows and the movies and our hearts are lifted by these brave little souls who carry their fates with dignity. We forget, however, that these are mostly fictions, that however noble are our beloved broken children, they are still children and they hurt like children and they fear like children and they cry like children and is there anything worse, really, for a child, than to be constrained in a chair - embarassed, ashamed - at the happiest place on earth while all the other children race and play with abandon?

Tanner wanted to hide. He wanted to not be seen. He wanted his weakness, his powerlessness, his sickness, his bound-in-a-chairness to be wrapped in a cloak of invisibility. He wanted - in the middle of all of the joy and all of the celebration and all of the hope (and yes, Disney does these things so well, with its spontaneous choruses of dreams really do come true, with its sudden eruptions of dance and sparkles, with its ever-present proclamations of joy, you can almost taste the hope, the magic) - to disappear.

And I don't even have words to describe the hundred million ways that my heart breaks - that it shatters - to know this. I don't have the words to describe the force of my wish that this just weren't true, that this would all just go away, that I could make the disease that is killing him not only invisible, but non-existent. That I could take away everything that makes Tanner want to hide and to bring him out into the sun and say, with conviction, see? there is no darkness here. There is nothing to be afraid of, there is no reason to hide.

There's a small part of me that wishes, sometimes, darkly, that we could have four-year old Tanner back; that we could go back to those days before the diagnosis when he was a wee bundle of four-year old fury, squeezing us with his round little arms, pummelling us with his joy, living a life of unrestrained happiness, reaching toward a limitless sky. But to have that Tanner back would be turn our backs on the Tanner who lives and loves and pummels us - with the sheer force of his heart - now. And that Tanner - this Tanner - is extraordinary, amazing, beautiful, brave. So, so brave, so, so beautiful. So deserving of being seen. Seen, and included, and loved.

It is not, however, my place to thrust him into the spotlight, to force him to bravely face the crowds and share himself. I can only tell his story, and hope that it gives you - the known and unknown yous who follow his story - some sense of the miracle that he is, this brave little boy who carries this terrible, terrible burden and who nevertheless goes forward, shyly, into the world, hoping to share in its joy. And if it reminds you to make an effort to really see somebody, anybody, who is hiding in a literal or figurative corner, to go over and take their hand and make the effort to let them know that you see them and that you think they are wonderful... well, then, that will have been no small thing.

Do it for Tanner.

Motorola - who sent me on my trip to Disneyworld (which unfortunately couldn't take place at the same time as Tanner's trip; one of his biggest wishes has been to someday have a holiday with his cousins, but this is tremendously difficult to arrange, and we were disappointed to miss the opportunity) - has offered me a Motorola Motozine Zn5 camera phone (read about it here; it is awesome) to give away. Which I'm going to do, through a random draw, BUT: in order to be eligible to win, you need to state, in your comment, what you will do to pay your good fortune forward. It can be anything - shovelling the walk of the old lady who lives across the street, or sitting down and having a talk with your kids about being inclusive of kids - like Tanner - who seem different, or making a donation to a charity of your choice (it'll be honor-system principle whether you follow up or not, but I really hope that you do.) You have until Sunday, midnight.

On my end - because I'm on a one-woman mission to turn every giveaway that hits the internets into a pay-it-forward giveaway - I'm going to make another donation, in the name of the winner, to the organization (Parent Project Muscular Dystrophy) that my sister ran to raise funds for. (If you haven't already made a donation, please think about doing so. I know that you have other causes to support, and I'll understand if you can't, but please, think about it, and maybe pass the request along.) And then I'm going to send a camera to Tanner, so that even if he feels most comfortable on the sidelines, he can share with us what he sees. So that we might, perhaps, see the world from his side, and look there more often.

(Congratulations to Catherine from PinkAsparagus, who won the draw for the Motozine camera phone! Catherine, please e-mail me so that I can arrange to get the phone to you.)

Labels: , ,


Blogger Mr Lady said...

You are now on a two woman mission, you beautiful inspirational thing, you. I can't wait to pinch you.

1:44 PM  
Blogger Michelle W said...

Make it three. I don't think there are any of us who are not in some way, hiding in that corner, cowering from something.

I don't really need the phone. I'd rather it go to someone else but I did want to tell you something that I will now be doing.

I've been thinking for weeks about a friend of mine who is danger of losing his children, his family, through no fault of his own. I kept feeling sorry for him and pondering his dilemma. He is heartbroken. And while he will not physically lose his children to disease or death, for him, not being with them will certainly feel like a kind of death to him. So, I am going to stop feeling sorry for him and figure out a way to help him. A way to use my teeny little corner of the blogosphere and the world to help him fight to keep his family!

I know that he will pay it forward!

P.S. If I did win the phone, I'd probably give it to him so that he could be one step closer to calling his kids. He has no phone.

1:52 PM  
Blogger Jenny Grace said...

There's a part of me that keeps my hand hovering over the mouse before I click over to your blog these days. Will I cry? Possibly. Am I reading this somewhere I feel comfortable breaking down in tears over someone else's tragedy? Maybe.

Please don't stop telling Tanner's story. It breaks my heart, but it is no small thing.

Whether or not the phone gods smile upon me, I'm going to start doing more for my family. Offering my grandpa a ride home so my mom doesn't have to make two trips, babysitting my cousins, taking my wee brothers out more often.

1:53 PM  
Blogger Steph said...

I am so sorry about your nephew. He will be in my prayers!

If I won the phone, I would give it to my single-mom friend that has never had anything except crappy hand-me0down phones because she would rather spend the money on her children's need than her own. She works 50 hour weeks at a job where she HAS to have a phone, yet the one she has now has a broken screen and only gets phone calls 50% of the time. I have offered to buy her a new phone but she is too proud. If I WON a phone, when I don't need one for myself, it would be a totally different story.
I know how overjoyed she would be to have a phone like this, something that she could take pictures of her kids with (her camera works about the same as her broken phone).
Take care!

1:55 PM  
Blogger Perksofbeingme said...

My darling how I hurt for Tanner. Please look into Muscular Dystrophy camps. I know first hand how helpful the camp can be for kids. Tanner can meet other kids with MD, he can have fun, he will be the normal and those that can walk are the minority. I think he would do great at camp, and even if he didn't go, he could at least experience it for a week. I don't know when other camps are but the Muscular Dystrophy camp that I work with is August 2-7. Even if he couldn't go to camp, I wish you could bring Tanner to SC so he could spend a week with me and my kids. Know that there are people who won't look at him differently and who think wheelchairs are pretty cool. I happen to be one of them. Look at this link for all of my Muscular Dystrophy related posts.


1:59 PM  
Blogger Issa said...

That amazing little boy is lucky to have such a great family. Lucky to have an aunt like you.

I spent Monday cleaning out closets and toy bins and gave bags of stuff to a woman and children's shelter near here. I also, because someone mentioned it, am going to go and purchase a bunch of toiletries to take to them. I don't have a lot of time on my hands, but I'm working on trying to find some, to help out there. They always need drivers to take people to interviews and appointments. If I win the phone, I'll donate it to them. I'm sure someone there could use it.

Keep telling Tanner's story, Catherine. We all need to hear about it. Hopefully if enough people hear about it, someone will help find a cure.

2:04 PM  
Blogger Chantal said...

I will donate to Children's Cardiomyopathy Foundation. Regardless of if I win or not. And I will hug my 4 year old.

2:04 PM  
Blogger Unknown said...

First, I have some very long and involved questions for God.

Second, I love you. Truly. Madly. Deeply.

Third, as easy as the "live for the day" platitude sounds in comparison to how difficult it is to live, I think that the dream to live in a country where all children can live and be judged not by the color of their skin, or the ability of their legs to carry them, or the *supposed* limitations of their minds, is even more difficult to realize.

We are human. We have faults. It is understandable...to a degree. What is not understandable is that we sometimes stop the sentence there and don't move onto the "I'm going to try, try, try again and try, try, harder" part. We can never do enough.

And there is, I think, the thought that we might - in our want to do the right thing - instead do the clumsy thing, or the unknowingly offensive thing, or the embarrassing thing. All we can do is keep trying, be ready to apologize for what we don't yet know, can't yet do, for our own human failings...but then keep on trying.

And so here is my promise to you, for Tanner:

I will keep on trying.

If I give in to my momentary shock or my distress or my not-knowing-what-to-do-or-say, I won't give up all together.

I will practice hard and diligently at being a good human to all humans and hone my humanity as a skill that needs continued hard work and practice in every instance.

I will work hard until it becomes second-nature - requiring no thought at all - to see the child first and remind myself that even a child who is seemingly burdened, even almost hidden, by braces and wheelchairs and uncontrollable behaviors, is still a child and wants and needs desperately what all children want. To be noticed, to be special for all the reasons that any other child - any other human -is noticed: because they are lovable and deserving of love and care just because they are.

Not because they are somebody's good deed for the day. But because it's the right thing to do...always. With everyone.

2:09 PM  
Blogger Unknown said...

And yes...if I win the phone, it will go to my friend with 4 children, no home, and a husband in Iraq who is currently in the process of divorcing her.

2:10 PM  
Blogger Maria Melee said...

I will donate my kids' toys/clothes as they grow out of them. And I know it's forever from now but I am slowly training to do the Komen 3-day in October 2010 (when I have weaned my little one.)

2:10 PM  
Blogger G Love said...

I worked at an MD camp. I could only do it one year. Now that I have a son - I don't know if I could even do that much. Footie-pajama'd 4 year olds facing down what they were facing down - it was too much.

If given the phone, I will double my donation to my Relay for Life team. I was planning on donating anyway, so I would do twice as much.

What if someone made Tanner an "Invisibility Cloak"? Like from Harry Potter (does he know/like HP?) I lost a cousin, aged 7, to leukemia. During her chemo treatments she was embarrassed by her hair loss, and we gave her a bag of sparkles (glitter) to make her head shiny. Dang if that didn't make her walk tall in public, head sparkling away.

2:13 PM  
Blogger Her Bad Mother said...

Perks - thank you - I've looked at your links and sent them to my sister (she's been a bit overwhelmed, though, what with another sick child - Zachary - and training for a marathon) I'll look again.


2:15 PM  
Blogger Merrily Down the Stream said...

Your post is equisite - I know that is an odd word but it is so spot-on - I will keep you all close in my heart. Hug that little man. I will pay it forward every way I can - please don't enter me in the contest.

2:25 PM  
Blogger Petra a.k.a The Wise (*Young*) Mommy said...

Wow, what an amazing post and it really makes you appreciate that you have healthy children who will never face the hardships he has to face every day. I wish I could just erase all these diseases and disorders that so unfairly afflict children, but it is a reality we must face. I have so much respect for him and his family and I hope they find the strength to stay strong for him through his days on this earth.

My love and prayers are with you all.

2:45 PM  
Blogger Jeze said...

I'm not commenting to enter. I'm commenting to tell you that you and your family and sweet, brave Tanner are in my thoughts and my prayers. Thank you for reminding us to pay forward, for that's what I intend to do. I've had some thoughts about how I can serve and help others through my photography. This post makes me think more about what I can do.

2:46 PM  
Blogger Michelle said...

I am now sitting here with tears rolling down my face. This was a truly beautiful post. I don't need the camera, I'd rather it go to someone who did.
But please let Tanner know that there are people out there, people he does not know and will never meet who are thinking of him and seeing at least one small part of who he is. And that part, combined with his family's strength and his aunt's words has touched us all very deeply.
Thank you.

2:50 PM  
Blogger Amy said...

I will pray for your nephew. His story is gut-wrenching. I'm so sorry.

2:52 PM  
Anonymous Anonymous said...

My hear hurst for Tanner. Unfortunately Muscular Dystrophy runs in my family. I wrote letters to Tanner the first time I saw your post (about two years ago, for Christmas). Unfortunately about a year ago I have lost the address. If you think he would stil like to receive letter please post it as I am sure many would write him letters. I agree with Perks that attending a camp organized for children with Muscular Dystrophy might do wonders for Tanner.
Finally if I win the phone I will donate it to a friend, who is a single mother of two beautiful girls, who would love to get such a cool phone.

2:56 PM  
Blogger Sarah Lena said...

My baby is 13 months old and has a severe foot deformity. He's happy, but I so fear every day he grows for every reason you've listed here. My heart hurts for you, Tanner, and everyone who has to watch a child suffer like that.

Honestly? To pay a win forward, I would match your donation and donate the cell phone to a battered women's shelter.

Again, many MANY hugs.

2:59 PM  
Blogger emily the mom said...

I read your blog all the time, but this is the first time I have commented.

I just wanted to say that this was so beautifully written and completely inspiring. I have been focusing lately on finding ways to teach my children about compassion for others and I think to successfully do so, I must be an example of compassion for them.

And sometimes I think its a hard goal to accomplish with all the daily noise going on, but you have helped me to realize that it can be as simple as just extending my hand to another....

thank you, and I don't need the phone, because I would probably break it, as I tend to do with electronics....but whether I win or not I will do my best to truly accomplish this goal with my kids through actions and conversations. I will stop thinking about it, and actually do it.....

3:01 PM  
Blogger Mr Lady said...

And I'd thank you kindly to not consider me for the phone. My cup already runneth over. *smooch*

3:03 PM  
Anonymous Anonymous said...

This post brought tears to my eyes and put an ache in my heart. I really, really wish I could hug Tanner. I know what he's going through about wanting to hide, I've been there - but his is obviously a more extreme feeling, and the slight feeling I've felt in relation to that makes me just want to take away that feeling he has and put it on myself.

I wish there was something I could say or do to help out, I really do. Because this isn't fair for Tanner, and it breaks my heart. He is so beautiful and brave; you can see that from the pictures.

I have always treated people with disabilities equally, and I have always let them know how important they are. I myself have one, although mine is far from life threatening.

I wish I could give you a hug right now Catherine, because if I feel this way after simply reading this post (and others about Tanner) than I can't imagine what you and your sister must feel on a daily basis :(

My life's goal has always been to help people with disabilities and even without and help make this world a better place. I want to work with children like Tanner, and I want them to know how important they really are in this world. I want to teach other children and even parents how important it is to include children like Tanner in their social activities. That's my pay it forward, although I don't want the camera phone thing, I just want to see less children like Tanner want to hide.

3:06 PM  
Blogger Anissa Mayhew said...


We were one of the lucky ones when Peyton was diagnosed with cancer. We were told over and over that we had hope for remission and a long life.

We know too many who weren't given even that small measure.

Time becomes so desperate, it isn't beautiful to treasure every moment because the underlying knowledge is that you are storing memories for a day when they're not going to be within arms reach, close enough to kiss and hug.

My heart hurts for your sister and for Tanner who has to suffer through trying to understand, the pain of acceptance, the fear of the unknown. And when I say hurt, I mean aches with every breath, because we've been there.

I don't need the phone, but if you choose to give it to me I'll be donating it directly to the Children's Cancer Center in Tampa to be given to a family in treatment who's in need. Many are separated from their loved ones as they seek treatment and this might be a tool to help them keep in contact.

Than you for never being afraid to say things as they are, to never sugar coat in an attempt to be more "friendly". Raw honest truth is what these our kids need to get the word out, to impact the hearts that will make it possible to someday give EVERY child a measure of hope.

3:08 PM  
Anonymous Anonymous said...

No phone for me, thanks. Just wanted to send my support and much love in the form of virtual hugs for and yours, most especially that brave, very special kid called Tanner.

3:09 PM  
Anonymous Anonymous said...

There are no words... and yet you find them. Beautifully said, and beautifully sad. Crushingly sad.

I am having a week of devotionals with my 9 yr old son - sparked by a Sunday school project, the election, Catholic guilt that I am not doing anything for anyone other than my immediates right now, and I want them to do more.

Tonight, I will share this story with my son, and we will say a rosary. For what it's worth.

3:10 PM  
Blogger VanBurenMom said...

Wow, this story really touched me! It made me look, really look at my children and remind myself that I am blessed with them, no matter how crazy things get.

I am a big believer in pay it forward. When my children out grow their clothes we give them to a local charity that than gives them to refugee families as they come to the US. After Christmas my son goes thru his old toys and picks an equal amount to give away as what he got. Some he gives to his sister but most go to charity for kids who dont get toys for Christmas. We dont have much ourselves, we shop 2nd hand stores, get WIC, use foodstamps all just to survive. But that doesnt stop us from sharing what we have with those who have less. I remind my children that no matter how rough it gets we have each other and love and that is more than some people ever have.

To pay it forward for the phone I will spend more time with my children, teaching them to share the wealth of love we have with others, and donate to our food pantry and charity store. But I will promise you right now to do that all either way, but with the camera phone I could take pictures of my children doing good to keep foever (and to share of course!)

VanBurenMom from Twitter (Morganna on Blogger) {Jaci in real life}

3:12 PM  
Blogger Goldfish said...

Oh, Tanner. I was a child who was stared at. I was a child who was ill (though, in the end, it didn't kill me). I was a child who was teased. And I was a child who tried to disappear. Now, through my sad little attempt at a blog, I am slowly beginning to tell this story, for the very first time. Because maybe there is another child who doesn't want to be ashamed anymore and is tired of her life or his body and needs to know that someone understands. That is what I have to offer. (No phone, please.)

3:23 PM  
Blogger Don Mills Diva said...

Oh Catherine, I made a donation but it seems so very inadequate.

I wish there were some way I could ease the suffering of Tanner and your family.

I don't even know that dear litle boy but my heart is filled with love for him...

3:35 PM  
Blogger Don Mills Diva said...

Oh and no phone for me - there are surely people who need it more...

3:37 PM  
Blogger Cat said...

Oh Catherine - you make me weep. At my desk. In an office with other people.

You are a force to be reckoned with. I applaud you and respect you for helping us make ourselves and our communities (online and IRL) better. This post comes at a time in my life when I'm working on helping my son have empathy. It's a tough road, but we're working on learning by example. And I will learn more through your example.

4:23 PM  
Blogger April said...

What a heart breaking story! Your family is in my thoughts. I have no interest in the giveaway, just wanted to show my support!

4:24 PM  
Blogger ewe are here said...

Heartbreaking... but an important story to share, how children like Tanner feel and how hard it is for them.

I don't need the phone... but I do need you to know that I will continue to emphasize to my children, and other children that come under my sphere of influence, to treat ALL children and people they perceive as 'different' for whatever reason with kindness.

5:23 PM  
Anonymous Anonymous said...

Oh my word. I stumbled over here based on a three of four long tweet trail. Then I read this and I am bawling. A very good friend of mine had a sister with Duchenne MD. She lived to be 31. She was amazing. I have a suggestion to help Tanner with his confidence and his mobility and that is a service dog. Service dogs can assist their partners in so many ways, least of all to give them the confidence to go out there and be who they are. I am not sure where Tanner is, but there are good service dog organizations all over. A good place to start is Assistance Dogs International. I say this as the treasurer for a small service dog organization in Oklahoma. We have places dogs with young people and older people with a vast array of physical disabilities.

Thank you.

5:50 PM  
Blogger lalana said...

You know, for about 3 years now, I've been planning on writing a letter. A simple thing that would take me no more than 15 minutes... but I haven't. It's a hard letter to write, and I'm being selfish by not writing it.
My son is 10, severely disabled, with a terminal diagnosis. He's developmentally 1-3 months old, with the social skills (according to docs) of a 6 month old. He's mainstreamed in certain classes at school, and we've had some issues with children being... well, mean. But there is ONE little boy that is truly amazing. Glen seeks out my son, holds his hand, pushes his wheelchair, talks to him no differently than he would any of his other friends. Glen will explain my son's condition to any child that asks, and makes sure that he gets to ride the bus with lil guy on field trips. Glen has been reprimanded once or twice for "fighting" - but he wasn't fighting. He was standing up for someone making fun of MY son.

That letter? It's going to be hard for me because Glen's parents have the child my son was 'supposed' to be, in my mind, before I knew. But in a world where everyone different is looked down on, these parents have instilled an amazing sense of empathy in their child, and are raising what will one day be a truly good man. And regardless of how much it will hurt me to write that letter... they deserve to know what a wonderful child their son is.

I'm pretty sure that's how I'd pay it forward.

5:51 PM  
Blogger Mary@Holy Mackerel said...

Having a child who had cancer, I can relate somewhat to your post. Awful stuff, these diseases.

I will keep you and Tanner in my thoughts.

6:15 PM  
Blogger Jeri said...

Catherine, my heart breaks for you and your family, and Tanner. I lost my oldest son when he was 16, due to a sudden asthma attack. I envy your family in a way because you actually know what will happen and can make the most of each day you have together. But I also know some of the pain of having a child who can't do things that others do. God bless you all. We do volunteer work for the United Way, our main project is "Day of Caring" which is planning and making home repairs for people who are unable to do them. We've lived here all our lives and know many people who need help throughout the year. Its our way of taking care of our elders since our parents are all deceased.

6:37 PM  
Anonymous Anonymous said...

Having a child with a disability, a disability that will not kill him directly but more than likely indirectly, this post broke my heart a little.

Cause Boo has no idea that he is different. No clue that he is a forever toddler. Teasing and looks from others do not register.

And for that I am thankful. So very very thankful.

My heart breaks for Tanner. And your family.

6:42 PM  
Blogger Her Bad Mother said...

Tree - he has a companion dog, (not exactly a service dog, though)

He's declining pretty fast. He'll be very, very lucky to make into his tweens. We are, of course, praying desperately for this.

6:43 PM  
Blogger geenalyn said...

Reading about Tanner always breaks my heart, he sounds like such an amazing child.

Two of my kids suffer from apraxia of speech, and have been teased by other kids for speaking differently. They know how important it is to treat everyone the same, to let them know they are included. I'm going to get the kids to box of some of their books and take them over to the city run preschool that runs on donations.

7:45 PM  
Blogger xxxxxxxxxxxxxxxxxxxxxx said...

I don't need the phone... just wanted to say that Tanner is in my prayers. I sincerely hope that he gets that vacation with his cousins some day soon.

8:08 PM  
Blogger Mandy said...

A heartbreaking story...

I don't need the phone, but I'm interested in paying it forward. I am putting some thought into it.

8:17 PM  
Blogger jodifur said...

I don't need the phone, but if I won it I would donate it to the child abuse organization I work for. We never have enough cameras to take pictures of injuries.

My thoughts are with you and your nephew and your family. When my sister was 15 and I was 11 she was diagnosed with cancer. She wasn't expected to live. She did, but my family has been there. I get it.

I am so sorry.

9:07 PM  
Blogger Me said...

I don't need or really even want a phone but I surfed in and want to tell you that my Mothers side of the family has this disease. Out of 7 kids, 3 got it and interestingly 2 of them were female even though it's generally known as a male disease.

Although they said V, D and L wouldn't make it to their 20's they did.

And 30's. And now... 40's.

One did pass away at 48 but the other two are still alive. Yes, they are in wheel chairs and both have trouble talking so others can understand but they have done quite a bit in their lives even with the disability. My Uncle is 48 and my Aunt is 50. I don't know how much longer they have but they made far past the teenage years the doctors told them. :)

This disease can slow them down but it doesn't always have to stop them! :)

9:09 PM  
Blogger Kim said...

I don't need the phone, we just got those exact phones this Christmas.
I wanted to write to tell you how much your willingness to grieve with your sister and her family means. When my daughter died, my sister did not grieve with me. It was hard. It put a real strain on our relationship. The fact that you are feeling this so deeply shows how much you care and how much you love Tanner.
Don't stop talking about him. Much love to you and your family.

9:15 PM  
Blogger Stimey said...

This post is powerful and heartbreaking and real. I ache for your nephew.

9:35 PM  
Blogger MrsDesperate said...

I'm not entering for the phone, but just wanted to send you and your boy hugs. Thank goodness he has such a strong, caring family to help him through this. Sharing your story does help others to appreciate what they have.

9:43 PM  
Blogger Perksofbeingme said...

Her Bad Mother- I searched and at this moment I haven't found anything about Summer Camp in Canada. Is there any way that a trip could be arranged for him to come to the US for a week? I could talk to the people with my camp and see if we can get him a spot for a week to come to camp even though he's not a SC resident. I'm not sure if I could make it work, but if you think he'd be able to come to SC (and whoever could bring him) I'll try with everything I can and all the contacts I have to get him into camp for a week. I'd be there and there would be lots of other people that would be great for him to meet. Please let me know what I can do to help. I'd love to be able to meet Tanner and just get a chance to talk to him and hopefully help him realize that he's normal and there are other people like him that are his age. I'm still thinking of what I can exactly do, but if you think of something before me, please let me know.

9:44 PM  
Blogger Anne said...

My heart aches for Tanner and the pain that he feels - both from his illness, but also from knowing he's different than others and wanting so much to do as "they" do, but having a body that won't let him. I pray for peace for him, for his parents and for you. He is very lucky to have you spreading his story and bringing awareness to his illness.

I know that I don't give like I should, but I have made a "resolution" this year to give more... time and money, to my church, to philanthropy and to friends and neighbors in need. I don't need the phone, but I will find a home for it with someone who has a genuine need.

10:30 PM  
Blogger Unknown said...

There is not a day that goes by that I don't think about how lucky I am to have 5 healthy kids. My 6yo son is in the process of an Apserger's diagnosis, but he's still HEALTHY.

I am in the process of finishing my degree in Social Work. I chose this field after my brother and sister-in-law adopted 3 abused and neglected children. Through my studies, I have changed my focus and decided to devote my career to educating kids at a middle and high school level about Domestic Violence.

While I am still in school, I continue to work as a Hair Designer, which I have done for 18years. I have been passing my knowledge along to clients of mine that are in need of referal to counselors and treatment centers. People are very open with their hairdresser! But the thing I am doing to pay it forward is something that actually came about this week. I am going to be offering my services to the kids who are living in our county's children's home. No one else in my salon was willing to join in with me on this:( Often times, these kids are older abused children that the county can't find foster placement for. I have a client who is a dear friend who grew up in this children's home, so this is something that I felt was very important.

'Cause everyone knows that no matter how bad you feel, a good hairdo always makes you feel better!

10:36 PM  
Blogger Rachael said...

There is nothing I can say to follow this. You are an incredibly gifted writer, and I am blown away by the heartache of the whole situation. I just can't even imagine it.

I have im in my prayers - to live his life to the fullest that he can, and to provide some kind of comfort for you and your family. (Hugs)

10:42 PM  
Anonymous Anonymous said...

I don't want a camera phone. I want my heart to stop hurting - and yours and your mother's and your sister's.

And Tanner's. Most of all, Tanner's.

10:50 PM  
Blogger Crazed Nitwit said...

Beautifully written.

I have no interest in a camera, I do however try to reach out to children and adults that are like Tanner, or developmentally disabled, or is something else that kids make fun or ostracize because of being different in whatever way.

The disease my youngest son died from 13 years ago was called progressive infantile poliodystrophy. It's different from muscular dystrophy but we too watched our beloved baby decline for several months before death.

Prayers for you and Tanner and his parents and brother.

10:50 PM  
Blogger F*Lush said...

My daughter died a slow death from a disease that affected her muscles. She could never lift her head, never use her arms or legs, she didn't even have enough muscle tone to drink from a bottle. When she was alive, before her dx and after, I believed if I had enough will and strength for her she would live. Sadly, that wasn't reality. A year and a half after her death, both my older children were in school full time, I cried and prayed about what and where my life was going. I was invited to volunteer in an inner-city school. I hadn't worked in 8 yrs and after being housebound for so long had extreme social anxiety.
My Roo will be in Heaven 3 years in March and I think she would be very proud of me. I forced myself out of my bed, got dressed, and went to volunteer. It changed my life! and it changed the children's lives that I came in contact with everyday! I got offered a job...they made up a new job description just for me, and now everyday, I put all that will and hope into kids that usually have no one that believe in them. Their parents are either in jail, murdered, or a family member has been murdered, they usually come from broken homes, they just need love. It makes me feel good to have touched so many children but at the same time....seeing them succeed is the best! My most recent I don't want to say success, because this sweet young girl did it on her own with my help, but nonetheless did it on her own....she was pulling out her hair in clumps, then her eyebrows, then her eyelashes, her mother is in a mental institution, I gave her a journal, She's a very BRIGHT girl, I asked her if she liked to write, I knew her answer would be yes.....She asked me if she could write during class without getting in trouble so she didn't pull her hair, she asked if I would tell her teacher she was going to write instead of hurting herself, yes yes, write all you can, if it makes you feel better WRITE!!! 3 weeks later, she hasn't pulled out anything.........and has written some beautiful, heartfelt, and tragic events of her life....but she's no longer self-harming. I love my Roo, I miss her, but she helped me to realize a bigger picture......and everyday, through my Roo, I help other kids.....believe and have HOPE.

10:56 PM  
Anonymous Anonymous said...

I found your link on the Grace in Small Things site, and I am so touched by your story, and by Tanners story. My prayers go out to your family-- I know a small bit of the heartache that comes with finding out that someone you love is hurting so deeply- and that there is little to be done for it except love them as fiercly as possible with every day you have left.

I don't need a phone- if I won it I would donate it- I just wanted to let you know that I care. I'll be praying for you all.

11:16 PM  
Anonymous Anonymous said...

Thank you for sharing your stories about Tanner with us. They are beautiful and heart-rending and eye-opening.

I will pay it forward (whether or not I win the phone) by becoming a mentor to a young person who has aged out of foster care.

11:21 PM  
Blogger Kaitlyn said...

Every bit of Tanner's story that you tell breaks my heart. I don't know him, yet I want to take his pain away. I want to take his disease away. Even from your words, I feel like I know this child has such a sweet, sweet soul. I'll be praying, obviously.

I can't enter a contest on the end of these thoughts, on the end of my heart hurting for such a precious child.

11:25 PM  
Blogger for a different kind of girl said...

Tanner is a beautiful boy. All of you are in my prayers. My heart breaks reading of even a hint what must go through his mind.

This is the year my husband and I really help our sons see there's a bigger world out there than the part of it they occupy, and we've done some volunteer time with Ronald McDonald House locally. We're encouraging the boys to choose from some ideas, too.

12:38 AM  
Blogger witchypoo said...

My son, who lost his best friend to MD, already pays it forward. In 2003, he gave his new computer to a classmate of mine who needed it for the IT course. Yesterday, she brought the machine to him because it needed repairs. He found parts from his other machines to upgrade it as well as fix it. He has always loved phones. He would be over the moon to have one. I'm so proud of him. I can see his friend, Richie's eyes twinkling at me as I type this.

7:09 AM  
Blogger MYSUESTORIES said...

When my son was 5 yrs old, there was little boy in the neighborhood who had leukemia. He had lost his hair and started school 2 years later due to his inability to be around kids/colds/etc. With gentle prodding, my son became best of friends with the little boy who had no hair and who was so much bigger than the others. Through my son, other kids came to see that this little boy WAS different, but he was also JUST another little boy. And together, he and my son forged many new friendships.
My son is now 12 yrs old, and there are lots of kids in his school who are sick/different/etc. I am proud to say my son is one of the first kids to strike up conversations with the not so average children, and this lesson will take him far for the rest of his life.
I will continue to raise my child's awareness as to focus on the similarities, not the differences in children.

7:11 AM  
Blogger Parent Club said...

1st off - please don't enter me for the draw - I hope it goes another reader. I write only in support.

I do weekly shopping for a elderly aunt who is dis-abled. She is the woman I want to grow up to be...and helping her is a very small thing that I can do - to pay it forward.

8:46 AM  
Blogger Avalon said...

Such a difficult thing, because if I take the hand of someone like Tanner and bring them out of the darkness, am I doing the very thing that makes them the most uncomfortable? In many ways, I have to respect their wishes despite what I would want for them.

I don't think there is any easy answer.

For me, my Pet Therapy work is an attempt to bring a tiny ray of light into those dark places. I love to visit the forgotten old souls in the nursing home. The people who spend their days quietly watching life pass them by. A visit may be the highlight of their entire week.

I love to visit the people at Hospice, facing their final days, sometimes regretting the choices they have made in their lives, sometimes fighting the inevitable with grace, anger, resignation and hope.

My favorites, however, are the visits we make to the children in our Inpatient Psychiatric Unit. Kids as young as 3 years old. kids with a multitude of psychiatric and psych-social issues. Some abandoned. Some rejected by a series of homes. All, so far, have been grateful for the limitless warmth from a tail-wagging little dog. No matter how dysfunctional life may be for them, there is something so curative about a warm, soft, sweet animal who sees beyond their behavior issues.

Every time I walk into one of these facilities with my beloved dogs by my side, I hope I am banishing some shadows, however temporarily.

9:34 AM  
Blogger Beck said...

Poor little man.
I was straining my brain, trying to think of something I do that's kind, when I remembered that I am raising two very kind children. If Tanner was in my Boy's class, he would have a whole-hearted friend.

And The Baby and I are making cookies for our neighbours across the street today, who are elderly and having a rough winter.

9:46 AM  
Anonymous Anonymous said...

I have...enough problems dealing with my own, chronic, (but not imminently terminal) illness. I can not imagine how it must feel to be a young child going through it all.
I will absolutely (and already do) talk with my child(ren) about being inclusive of people who seem different, and stress the importance of, well, not being an asshole.
I don't need to win anything, I'm just commenting for support.

9:52 AM  
Blogger BaltimoreGal said...

I don't want to enter in this contest, just wanted to share that I lost close family member, my cousin's son, to a very obscure dystrophy known as Infantile neuroaxonal dystrophy (a dystrophy of the brain that begins between 6 months- 1 year and results in death by age 5-10). My cousin lived with me like a sister and to see her son die of this disease, I really do understand how hard it is to watch someone die slowly. What we did not have to suffer is Jacob's consciousness of his condition and how he felt about being different, because he never knew. I don't have any words of comfort except to day if your sister could go to this website
and read this to her son, it might help him to know there are places where he would not be that different.

9:58 AM  
Blogger Danielle said...

What a amzing sweet boy Tanner sounds like. His story is heartbreaking and needs to be heard.

I would pay it forward by helping our friends that in this economy can not do much for their own families. Even if it is just dropping a grocery store gift card in their mail box annonomously.

Thank you for reminding us all how fortunite we all are and that we should help those that are not as...Thank you!


10:41 AM  
Anonymous Anonymous said...

Thanks for the inspirational story. I lost a child to Trisomy 18 less than a year ago and have been wanting to do something to help parents dealing with sick/dying children because nobody knew what to say to me.

It's time to get conversation going and connect with people who can share your pain and worry and I feel like 2009 will be a great time to get this going-thanks!
linjenals at yahoo dot com

10:57 AM  
Anonymous Anonymous said...

I'm clicking over to The Plan website now and doubling my contribution to the two children we already sponsor. Thank you for reminding me to do better...

I'm so, so sorry for Tanner and your family. I cry every time I read your words about that strong, brave boy. This is why I could never believe in an interventionist god.

Please don't enter me in the contest.

11:18 AM  
Blogger mom2boys said...

Such a heart breaking story. I will be praying for Tanner and your family that he gives you all the strength to be there for this brave sweet little boy. No one should have to ever go through this.

I try to give back when I can. I do help by donating clothing and toys and tolitries to our local women and children's sheleter often. I will looking for other ways to help in 2009. Thanks for sharing this inspirational story.


11:24 AM  
Blogger Kim said...

Tanner's story just breaks my heart into a million pieces.

My daughter is disabled (she has Cornelia deLange Syndrome) but she is also mentally retarded, and so doesn't register her differences ~ that is such a blessing to me. She seems to think that *we* are all weird, what with our walking around, using 10 fingers, talking...what IS that all about, anyway? ;)

Her condition is "life limiting" ~ she has several physical defects that will inevitably shorten her life. We've been blessed to have her for 12 years now, and we cherish each day with her.

As for paying it forward ~ we'd make an additional donation to the CdLS Foundation. We already donate to several charitable causes in her name, but the CdLS Foundation is the one that is nearest to our hearts, obviously.

Many prayers for Tanner, for his mom and dad, and for you ~

11:33 AM  
Blogger Her Bad Mother said...

Lindley - yes, a conversation MUST be started. Hopefully it's getting underway ;)

Thank you all so much for your good wishes and prayers.

11:46 AM  
Anonymous Anonymous said...

Tears flow. Your words are such a gift to all of us. Oftn, I think of the phrase..."Time is the stuff that keeps everything from happening all at once.." Tanner's time is very much that. And there can be comfort found there. But it hurts so much still, because Time reassures and promises us the love we need now.
I work as a nurse in the mother -bay unit. I try to pay love forward every night I go to work. If chosen to win, the gift will go to the first family I encounter that needs such a link in order to keep in touch with their families as they sruggle thru the illness of a newborn or child and have to endure separation as a result.
Bless you Tanner. Please don't go invisable yet. You are so beautiful.

11:47 AM  
Anonymous Anonymous said...

oh catherine i am so sorry that tanner feels like he wants to be invisible...hes a beautiful little boy...there is always someone worse off than we are.i will pay it forward by doing more of the things we are already doing.i am so sorry for the pain you and yours are experiencing.big hugs to yuo all

11:48 AM  
Anonymous Anonymous said...

I was on the fence about whether or not I had the time to commit, but your posts of the last two days have pushed me over the edge. Whether or not I win the camera phone, I will MAKE the time to volunteer at a local adult literacy program. The first training session is Saturday.

12:02 PM  
Anonymous Anonymous said...

I have a 3 year old daughter with Leukodystrophy. She is the happiest little girl in the entire world and I dread the day that she, too, wants to become "invisible". Why must people be so cruel? It's because they are ignorant and afraid of anyone who is different. By putting Tanner's story out there, you're helping educate people. Thank you for that.

12:13 PM  
Anonymous Anonymous said...

I don't need the phone. Would rather someone who does have that chance to win. That said, I'm so sorry about Tanner. I know the sinking of his spirits must be incredibly painful for all of you. I know it broke my heart just reading it. I wish I had some easy answer. Or a magic spell. Something that would help him.

About paying all my good fortune forward, I will continue to do all the charitable work I already do with various local humane societies and animal rescue organizations, as well as my work at Green Mom Finds trying to get everyone to act in the name of safer toys and food and cleaner air and water :)

12:30 PM  
Blogger Jessica McFadden said...

For the rest of the year, I'm going to invite the kids and parents that seem to be on the fringes of the preschool world - whether they're new to the area or school, shy, perceived as different, whatever! - over for playdates and coffees rather than simply sticking with the same old pals that we already know well.

I pledge to step out of my and my kids' comfort zones in order to make other families feel more comfortable.

Great post and giveaway method HBM!

12:34 PM  
Blogger Natalie Willis said...

Just yesterday, my 8 yo daughter, who is fighting a brain tumor, wrote about her wish to just be a kid. You can read it on her site, if you are interested. It is so hard to watch a child fight for their lives and fight for their childhood.

Tanner, his family and yours will be in my prayers. I pray for a day that amazing, special kids like Tanner can be just kids. He is a beautiful spirit.

Thank you for sharing his story and his fight.


1:25 PM  
Blogger Ginny said...

What an amazing post. I just was talking to my 11 year (6th grade) daughter about how it is good to treat everyone the same. She has a boy in her gym that is mentally challenged. He has to wear a helmet every day to play. I guess sometimes he puts it on backwards & her friends & her will help him out. She was saying how nice he is & how great it is he tries to play in gym with everyone else. I was so proud of her!

For the pay it forward, I am always looking for ways of doing things for others. I don't have anything specific because I am trying to naturally do this & teach my daughters to do it as well. My hubby is also always helping out others in day to day life. We struggle with finances, etc, so anything we can to do to help, we try to do!

2:07 PM  
Blogger Tuesday Girl said...

Thank you for charing your family's story. I wish for peace for Tanner and your family.

In this new year I am going to reach out more. Recognize when someone can use a hand or an ear like my elderly neighbors. I am going to try and help as much as I can even if it is just as a babysitter, cook or friend for others.

2:08 PM  
Blogger mommamia said...

It took me two days to read this post. I cried everytime I tried. I lost a son this year to a degenetive brain disorder. He did not know he was different. He was 22 but had the cognitive development of a of a six month old.
My 18 yr old daughter has cerebal palsy. She does see the stares and hear the talk that sometimes goes on around her. I know it hurts but she is growing into a strong produtive young woman.

I agree with Lindley I hope conversations do get started.

I do not want the phone.

I will be donating to your sister's walk and another family I know that is going through a hard time.

2:20 PM  
Blogger Kyla said...

What I hate most of all is that he has to bear the knowledge of it all. The awareness of what he could once do, slipping away from him.

And I hate that your sister has to watch it happen and know one day, it will all slip away. I think of her, and you all, often.

2:43 PM  
Blogger makeetis said...

This post really got to me. I am still tearing up. I wish your family the best and know you will be in our prayers. As far as the paying it forward I do try. I don't have much money but I do donate once a year to the childrens cancer clinic. I also have an ederly woman friend who comes and spends time with my family because she is all that's left of her family. I would want someone to do that for me and I believe what goes around comes around. Again I just want to say I hope and wish and pray for the best for Tanner...

2:43 PM  
Anonymous Anonymous said...

I would love to be able to use this phone to take pictures of the dogs and cats at the animal shelter I volunteer at. I always find myself talking to strangers about adopting animals and it would be so great so show them who's available at the shelter. I am so so so sorry about your nephew.

2:57 PM  
Blogger Unknown said...

Oh my - I am crying right now - I had no idea what I would be happening upon as I clicked on over here from Hottie's blog and to read this story and to hear about this brave brave REAL boy is just too much for this mama's heart right now.

And what a beautiful writer you are and to think I'm here on a blog that's named "Bad Mother" and then to read about your mission and your heart and to feel all of this oozing good out into the blogosphere -

I don't want that phone - I just want to do some paying it forward. I try to do the little that I can but I like your giveaway mission - I don't too many of those but I will remember your words the next time I do.

I will donate to Tanner's cause and I will do my part to spread the word...

3:25 PM  
Blogger Bebemiqui said...

I will pay it forward by secretly loving on the women around me who are so down on themselves. Which affects their munchkins.

3:36 PM  
Blogger Amy W said...

So sad to hear more about Tanner's condition. And how heartbreaking that his trip to Disneyworld would be marred by embarrassment about his wheelchair!

Thanks for being so "pay it forward" conscious. I've been trying to do little things over the last couple months to even a karmic score that helped me out in November (you'd have to read my blog to know what the heck I'm talking about)-- I pay for people's Starbucks in the car behind me in the drive-through, I over tip at restaurants, I gave $10 to a h.s. guitar player at a coffee shop (the most rewarding pay-it-forward yet! His face was priceless when I dropped it in his guitar case), and I donated to the ACLU. I plan on continuing with all the little gestures and will think of Tanner the next time I do one.

3:55 PM  
Blogger Emilie said...

I will donate to another cause that is close to my heart. My sister has three children, all with autism. They also have other diasbilities such as food allergies, sleeping disorders, tourette's and high anxiety. They are also judged and people don't understand why my 10 year old niece twitches so much. I will pay it forward by donating to both Parent Project MD for Tanner and to Austism Speaks for them. Thanks so much!

5:27 PM  
Blogger mamatulip said...

I hate that you and your family are going through this.

I hate it.

I'm not commenting to enter, I'm commenting to tell you I love you. And I'm thinking of you and your beautiful family.

I try to keep the 'pay it forward' mentality in mind each day, though my focus does blur at times. This is a beautiful post.

5:50 PM  
Blogger moushka said...

My heart goes out to you, Tanner and your family.

First I want to share a story of what someone did for my adult daughter. She wanted braces but didn't have the money to get them. One of her fellow employees paid for all of it, but the only catch was for when she was able to do it to pay it forward.
He had someone do it for him and was ready to pay it forward and my daughter was the person to receive his gift.
My daughter won't be able to pay it forward for many years, but I know she will. And hopefully the kindness will continue to be passed on through the many years it takes to fulfill this gift.

Me, I would help a good friend that is going through a tough time in her life right now. After finding out her son had luekemia she found out her husband had lung cancer. Her son is recovering, but her husband just went into surgery for his newest cancer of the bladder. My gift is to take care of her kids so that she can take care of her husband.

6:02 PM  
Blogger Neo-Geek Girl said...

You have a gift for words... you touch a person's soul with just a few keystrokes.

I won't say how I will pay it forward, so that I can't be eligible for the prize. I just want to tell you I will hold Tanner and you all in my heart and I will make a difference.

6:18 PM  
Blogger kittenpie said...

I would do two things:

- donate used baby things as we are done with them instead of saving for friends or craigslisting them. The Massey Centre is near us and could definitely use them.

- when I return to work, make a point of returning to paycheque deduction donations so that i can't forget to donate throughout the year, not just at those highlight times like runs and food drives.

(But the phone, I'd give to misterpie, whose phone died and who is not yet eligible for a new one.)

6:40 PM  
Blogger Blog said...

I am so sad, (my heart, too, shatters) to hear Tanner is experiencing these feelings, that he wants to hide.

It is so important to me to recognize and SAY HELLO to and hold the door for and look in the eyes of people with special needs, and others whom too many people don't care or can't bear to acknowledge.

He should be raised on people's shoulders, not ignored, stared at, made fun of, shunned.

I'm daily involved in my animal rights and environmental causes, but, and I will continue to donate annually to Muscular Dystrophy in Tanner's honour.

Sending him and your family love....

7:28 PM  
Blogger Blog said...

I wrote my "pay it forward," but I don't need the phone.... Someone who needs it should win it. Thank you for the opportunity, though.

7:32 PM  
Blogger Sherry G said...

i like to help out at our local food bank with my family. we often talk about making this a regular activity because it feels so fulfilling.

8:34 PM  
Anonymous Anonymous said...

I'd kidnap my sister and make her take a day off in the city.


9:52 PM  
Blogger Her Bad Mother said...

F*Lush - oh, my heart.

10:00 PM  
Blogger Her Bad Mother said...

Perks - forgive my ignorance - is SC South Carolina... I`ll look into it..

thanks so much!

10:02 PM  
Blogger Buki Family said...

now that im a mom, its so hard to hear about children suffer. i want to do something to make a child smile. i have a lot of connections with Africa and will help raise some money to send some kids to school in Congo, where many kids can't go to school because their parents can not afford the 30$ for the year's school fees.

10:22 PM  
Anonymous Anonymous said...

your story about tanner was so inspirational and very touching.

as for paying it forward, i am going to shovel my neighbour's driveway and i already donate to the local women's shelter but i should really do that more often!

fertawert AT yahoo DOT com

11:37 PM  
Blogger Bev said...

My friend, who fortunately has lived into his 40s, has a rare form of MD that killed his mother in her 30s. He has been wheelchair bound for years, but has recently completely lost the use of his arms and his neck muscles will probably be next. We go out to dinner, we engage in conversation and we allow him to be the witty, intelligent person that he is. We hold his drink, we handle his napkin and no one acts as if anything were different. I think he lives for those rare evenings out. I wish for Tanner a friend that can see beyond the disability and see the bright boy trapped in the illness. Friends are so important.

11:53 PM  
Blogger nape said...

My heart goes out to you and your family. Though I don't know how you feel, I know how my family feels about my 6-year-old nephew Sam, who is getting chemo for leukemia.

I'll use the phone to take hotline calls for addiction recovery (as I do now). Currently I use a cellular phone I bought in 2000. It makes and takes calls, but I know its days are numbered.

I wish you well.

12:50 AM  
Blogger MrsVladdevlor said...

Your writing is always so touching, and I'm truly happy that I came across your blog a while ago. I've been following it since.
I'm so sorry about little Tanner, this kind of pain is the worst kind, I wish that little kids would never have to suffer like that...
My heart goes out to him, his family and to you..

3:32 AM  
Anonymous Anonymous said...

Today I'm going to help a friend out with her daughter. Admit able I should do this more and have found all kinds of excuses. Her daughter is 6 and like Tanner is confined to a wheel chair. She has no mobility from neck down. A drunk driver hit her as she and her mother were going for a walk to Zellers. Please don't drink and drive.


6:48 AM  
Anonymous Anonymous said...

It's so true, the wild and unfathomable depth of suck that these children must wrap their brains around. So unfair, and that unfairness comes in waves. Sometimes it's just a little unfair, ignorably unfair, and other times it's a steamroller over your heart, dropped from a height.

My sister (who has nemaline myopathy, another flavor of MD) has faced her own mortality and, at 17, is unbearably stable and steady. I so wish she was able to be flighty, focused on any college in the world instead of having to visit the campus to make sure they're *actually* wheelchair-accessible, thinking about her next date instead of resigning herself to the idea that she is somehow fundamentally unattractive. So much.

But the flip side? She's aware, and thoughtful about it. She has become resigned, stopped being embarrassed, started living her life with pride despite the disability. (And, you're right, it is a disability. Literally crippling.) She was recently named the "MDA Ambassador" for New York State, and is overcoming her fear/embarrassment of public speaking to bring some of her story out to the public. Can you imagine?

It boggles the mind.

As for the phone. I don't have any new plans to pay it forward, because I'm in the middle of my current project. My friend L, a single mom of a 3-year-old, gave birth on Monday. She, the big sister, and the newborn are back staying with us (they lived with us for two months over the summer) until she's a bit healed and ready to go home. She has an abusive ex-husband who is actively searching for news about the baby, but we are all confident that she is safe here. Cared for. Able to focus on what's really important, not on the what-ifs.

She could use a new phone...

9:19 AM  
Blogger Caitlin said...

I just wanted to let you know that I love how vivid and passionate your writing is. I really enjoy reading it.

That said, I'm a Disney World cast member: first as a College Program Great Movie Rider, now as a campus representative, and hopefully soon to be a Great Movie Rider again. I don't know if you know much about the Magical Gatherings programs, but Disney does offer trips designed for groups of extended family. Also, there's a place called Give Kids the World that is specially designed for sick children to stay at during their Disney trip. If you ever think about going to Disney again, I'd be happy to answer any questions you might have.

10:07 AM  
Blogger Katie said...

I rarely comment, but I read your blog every day, and Tanner's story breaks my heart. He is a beautiful, brave little boy.
I'm running a half marathon in Madison in May, and I'm going to be a member of Team in Training, which raises money for cancer.
And remember, Tanner is as lucky to have you as you are to have him.

10:39 AM  
Anonymous Anonymous said...

This is the first time I've ever commented on a blog or discussion board....your words touched me and brought tears to my eyes as I think of your little man growing up to feel the pain of being different. And to feel your pain as you are forced to helplessly watch your beautiful boy out in the world. I applaud your drive to do what you can....by getting the word out to others about the disease and encouraging others to lead by example in their families and communities...to teach compassion and inclusion for all others. When my 10 months old son wakes up from his nap, I'll kiss him and hold him tight and some day teach him well. I promise. (Don't enter me in the phone contest...you have many worthy entries already!)

11:41 AM  
Blogger Georgia Hardstark said...

This post broke my heart, and I was thinking this before I even read the "what would you do to pay it forward" part, but I've been meaning to get tested to see if I could donate bone marrow to anyone for a while now. It's about time, I think.

12:14 PM  
Blogger just a kat said...

Ahh, how I wish Tanner was surrounded by kids I love, kids I have taught "dont stare, he/she cant help it, he/she is a regular kid like you, with feelings. Treat him/her as you would want to be treated". It all goes back to that simplest of rules - The Golden Rule. My daughter got into a verbal altercation in school defending a disabled students RIGHT to play volleyball in PE. I would have backed her to the ends of the earth - that is how I raised her - she teaches others what I have taught her. I am blessed with (3) godbabies, who I will instill these same views in.

Ignorance and hate perpetuate; lets put a stop to it - if EVERYONE that reads this blog promises to do something good in Tanners name - the possibilities are ENDLESS!! Think about how much WE will have paid forward.....

Tanner, I would have been HONORED to be with you at Disney and wish you'd had a better time. Please try not to wish yourself invisible, for there are too many that love you and are happy you are on this earth. Much love and peace...


PS: No phone - donate it to someone that NEEDS it - have Motorola set up a fund for Tanner. .send him to MD camp to help him learn coping skills and have FUN..or to get ALL of you to vacation together....honor Tanner's wishes.

(must go dry cheeks now)

12:17 PM  
Anonymous Anonymous said...

I have a special needs child as well. I am a single mother and he has three siblings. I don't find a lot of time to give him as much attention as he needs. You are a very proactive person and I admire that. Thanks for this contest. It's an item that I really need.


ginnyswe at gmail

12:21 PM  
Blogger Crystal Arcand said...

I will use my blog to link to stories like Tanner's to help spread the love, hope, and prayers of those that touch my heart instead of just reading them and moving on. This contest and post have started a new feature on my blog - linking to the human discoveries I make each week. Thank you for making me more human - I hope to help make others more human, too.

12:24 PM  
Blogger Magpie said...

Heartbreaking. Thank you for continuing to tell his story.

12:40 PM  
Blogger Alice H said...

Thank you for your story and for your example of doing good. I've been wanting to join the March of Dimes Foundation and I think I will - that will be my way of paying it forward. Thank you for the chance! alicedemske at hotmail.com

12:45 PM  
Anonymous Anonymous said...

Dear, dear sweet Tanner. Please don't hide. There's something that the world doesn't understand. People that are different, people like us, are stronger than they could ever be. It's easy to be normal.

They don't know what we know. They don't understand that things like wheelchairs, hearing aids, glasses, crutches.. Aren't weaknesses, they're signs of strength. It's easy to be normal. To not have these things encumbering us.

I wish, for you, that you could discover this within your lifetime. It took me well until adulthood to really understand. I'm sorry you don't have that luxury of time.

Sweet, sweet little boy. :(

2:17 PM  
Blogger JoAnne said...

I have been reading your blog for some time but this is the first time I have posted.

I understand a lot of what you write about your nephew - I have a 5 year old son fighting a brain tumor. Our family still has hope, though, and I wish there was some way I could share that with you and your family. My son has done well and we seem to be beating this monsterous thing. We recognize every day that that makes us the luckiest parents on earth.

My son & I recently went to a toy store liquidation sale and bought a bunch of new toys that we will be taking with us to our next chemo treatment in February to share with the other children. That is a cause near and dear to my heart - donating to hospitals and clinincs so that they can bring a smile to the faces of scared, sick little children.

Please keep posting about Tanner. He is always in my thoughts and prayers, JoAnne

2:39 PM  
Blogger Amo said...

Almost immediately after I read this post, my 5 year old came in the room and randomly said, "Momma, I don't wike bwack people. I jus wike people wif skin wike mine." That was quite possibly the most heart-breaking thing I have ever heard him say. Dumbfounded, I just sat there. I'm still at a loss to where he got the idea and my mind is reeling from the experience.

Not only am I mortified at this, but I worry about what other 'types' of people he's segregating from his little life. Would he refuse to play with the little Tanner or would the son I know, the son who ran into the surf to help an elderly woman out of the water, run to Tanner's side?!

I am determined to encourage both of my boys to not see differences such as color or disability. They will grow up to break that cycle. I'm not entirely certain how to start the process without 'shoving it down his throat' and ultimately making it worse. In fact, it has kept me up for several nights.

I commend you on your fight and I promise to keep your family in my prayers.

I promise, too, that my sons will be raised to notice the invisible members of our society.

(No phone here, please. But any suggestions are welcomed!)

4:46 PM  
Blogger Momo Fali said...

My cousin, who was like my brother, died of MD in 1991. I am sitting here in disbelief that there is no cure for this disease yet.

Every year, when I was young we held fundraisers for MD and I have taken the belief that one person can make a difference and I requested that we start a special needs program at my kids' private school. I am proud to say that I nervously got up and asked for money from over 1000 people, and we raised over $18,000 from my speech alone. It feels damn good too.

5:16 PM  
Blogger Sky said...

I just want to reach through the computer and give you a big hug!

I love the Pay-it-Forward giveaway. My children and I would like to make a donation to Tanner's Boogie. I'd like to help reach the goal!


5:28 PM  
Blogger Unknown said...

I don't need the phone. If I won it, I would raffle it to my friends and donate the money to Tanner.

My pay it forward will be that once these babies are born and things have settled down, I'm going to start to volunteer doula for teenage mothers again.

7:00 PM  
Anonymous Anonymous said...

I will give my current phone to someone in need.

7:05 PM  
Blogger Momnerd said...

I actually read this post yesterday and I've been pondering on it ever since. This post was one of the most touching I have read in a while. My oldest son is 8 and as I read I tried to put myself in his mother's shoes. It's one of those things where people ask you: "how do you do it?" And the real answer is that you don't, but you do because you have no choice. I have won some wonderful giveaways and I even spoke on a recent post (http://themomnerd.blogspot.com/2008/12/my-heart-is-full-to-bursting.html) about how I wanted to give back. I am currently giving away $50 out of my pocket so that I can pass on the joy of winning to someone else. I try to think every day about others and how I can help make their life easier. And it is so wonderful to find someone like you who has the same mission. I honestly don't need to win this one, I don't really need a cell phone, but if I won I would pray about who I could help and help them in some way, either with money, food, etc. Thanks for paying it forward and my prayers are with the little guy. Your nephew?

7:25 PM  
Blogger anniemom said...

This just grips my heart - - I have to pretend it's not real just to hear it... bless you all. I'm paying it forward this month by taking my 2 year old to an assisted living environment and adopting a grandfriend... we don't have family in the area and I'm being drawn to this for some reason... hope we can make some memories.

7:42 PM  
Blogger Mommyhood is Thankless said...

This made me cry, I always tell my children that EVERYONE is different and that makes everyone worth including!

Tonight, I will pray for Tanner and his family. I know that it is tough


8:59 PM  
Blogger Her Bad Mother said...

Sharla, yes - my nephew, my sister's son.

9:04 PM  
Blogger The Grown Up Teenager said...

My blog is still too little to really do giveaways or reach out to others because I can count my readers (and my posts!) on one hand.

I'll enter the draw because my phone is on its verrrry last legs right now, and I could so use a new one.

But my pay it forward is much more important. I'm in a major city, and have considered applying to volunteer at the Children's Hospital here for a while as a cuddler for the babies who's parents can't be there all the time.

I've been afraid to do it for far too long, because I was afraid to get attached but its about time I move past my fear and do it for them. So thats my pay it forward, to enter the draw. :)

9:34 PM  
Anonymous Anonymous said...

This post had me in tears. My child is only two but I still try to use every possible opportunity to teach her compassion towards others. We started a family tradition when she was born to adopt a needy child at Christmas. We will continue to do this every year and I hope this will teach her to have a giving heart.

Your nephew Tanner is a inspiring hero, though he may not know it. Most children his age like to dress up and are obsessed with superheros. Maybe you could make him a super hero costume to wear as his "armour" in situations that make him uncomfortable? Just a thought...


9:58 PM  
Anonymous Anonymous said...

when typing my email (above) i didn't hit one key hard emough. My email is teq97(at)hotmail(dot)com.

9:59 PM  
Blogger Unknown said...

I start my first day of hospital clinic on Monday, as a first year Radiology student...and while I am as nervous as all get out...I will look my patients in the eye and seek out the courage. I will, for Tanner, seek out the person and not the ailment.

And I don't need a phone...so I would donate to the women's shelter...

10:30 PM  
Anonymous Anonymous said...

what a heart wrenching story. i have no words. thanks for sharing this with us.

i will try to donate to the women and children's shelter more often.


8:14 AM  
Anonymous Anonymous said...

I don't want a phone, but I will make a donation to a charity. I'm sorry that Tanner has muscular dystrophy. I can't imagine living with that hanging over the head of one of my children. It would break my heart every single day. I am so fortunate in that my daughter doesn't understand that she is disabled.

Sending a prayer out to Tanner and his family.

8:14 AM  
Blogger Susanne said...

Is there a place where Tanner can be with other children in wheelchairs? I used to work at a school where most of the students were handicapped, and they alls said that they were so relieved to be among others like themselves, where the school was build for wheelchairs, and crutches, and people who need help with everyday things.
There were about half a dozen children with Muscular Dystrophy, too. There even was a grown man, a guy of 30 who had it, and who was the first to reach such an age.

8:22 AM  
Anonymous Anonymous said...

That is a heartwrenching story. The poor child. And your family, I can't imagine the pain. Regardless of the phone I made a donation to Riley Children.s Hospital in Indiana under "Sweet Tanner with Duchenne's Muscular Dystrophy". I hope he finds peace.

6:17 PM  
Blogger Heather said...

I started to write a long comment but decided I will email you instead. I just wanted to send out many hugs, love and prayers to Tanner and your whole family. I see the difficulties that my friend faces with her daughter who is wheelchair bound, who others see as "different" because she can't speak. E. is one of the most wonderful children I have ever had the pleasure to meet and I am so thankful & proud that The Chicken loves her and sees her as E- her friend, and not as anything else. I am looking forward to tomorrow night when we have a girls night with E and her mom and the Chicken and I at a local hotel for Chicken's birthday.


8:53 PM  
Blogger Melanie D. said...

This comment has been removed by the author.

9:49 PM  
Blogger Melanie D. said...

Maybe you've read my comment by now on your email? I deleted it because the last thing I want to do is anger you. I've read about Tanner's story here through the last year or so. You might notice my feelings get a little strong. If I can help, you email me.

9:58 PM  
Blogger Her Bad Mother said...

Omaha Mama - you didn't anger me. You should know - his story is more complex than is presented here. He is not a miserable boy, and he does not spend every waking minute in shame. He has interests, talents. His family does not let him flounder in the dark. But he does have moments of struggle - moments of shame, such as the one that I described - and it's a tragedy and I hate it. It's not one that can be fixed by just telling him (truthfully) that he's a good artist. There's a larger societal problem that has to do with the way that differently/dis-abled people are treated.

But - to your concern - I wasn't angry. Believe me, I understand the strong feelings. I understand them too well.

10:15 PM  
Blogger Lady M said...

I've closed this post a few times without commenting because I couldn't come up with something meaningful enough to say. Came back because it was more important to say it anyway:

Much, much love to Tanner, and your whole family.

12:08 AM  
Blogger Unknown said...

My heart goes out to you, Tanner is an inspiration. As a pay it forward I want to make regular donations this year to help bring alittle more happieness in these hard times. Thanks

12:48 AM  
Blogger Leah said...

I just recently helped a dear friend donate some toys and books to the Toy Library at the Huntington Hotel. It's a subsidized hotel around the corner in downtown L.A. This is a fairly bleak place and has 22 families and sometimes children in these areas are forgotten. Well at the Huntington - not anymore!!!

Here's an article about it: http://ladowntownnews.com/articles/2008/09/08/news/09-08-08-news05.txt

It was really nice to do something for our favorite people - kids! Paying it forward creates such magic in their lives! It would be so special to donate the phone to the Huntington or even to our neighborhood literacy project!

You are truly an inspiration!

Thank you! : )))



4:30 AM  
Blogger just mom said...

Wow. There's no way I can come close to expressing my thoughts and feelings as eloquently as others here have already done. Just know though, that my family is praying for Tanner and your whole family too. He sounds like such a beautiful, precious guy.

As for the paying it forward. . . I am truly amazed at some of the things my own kids do and say. Just this week, my six year old came to me and said 'Mommy, what if I saw a person walking and they had no coat and they were cold and had no money and couldn't get a coat? Mommy, can I take a dollar out of my bank and figure out a way to give it to someone who doesn't have any money?'

Yeah. I almost cried.

To think that completely on her own, she came up to me and asked what she could do to help someone who doesn't have!

So my pay it forward is helping her follow through with her idea to give to others who are in need this winter. We're doing a coat, hat, and glove drive and are donating all the items to our local homeless shelter. I'm optimistic that this will be a huge success and we'll be able to do it every year. :-)

BTW, I didn't see in your post where we were supposed to give our email addy in our comment. Do you need it? Thanks!

And give Tanner some extra love puffs (that's what we call hugs, kisses, and 'I love you!'s around here) from us.

6:41 AM  
Blogger Brooke said...

Wow. I wish we didn't always need reminders about how tenuous life is.

I plan on donating a chunk of money to organization that supports families who are dealing with cancer.

I wish you and yours the best!

10:42 AM  
Blogger KellyC said...

I've been on the receiving end of paying it forward. It's a humbling, amazing thing. Two things our family does to pay it forward are: 1)make meals for families who are dealing with hospitalization, new babies or some other major change and they need help and 2)we sponsor a child through a international organization.

Prayers for Tanner and his family.


11:10 AM  
Blogger Connie said...

I keep saying I'm going to make a donation to St Jude's hospital and never seem to get around to it. I promise to make that donation and also a donation to Autism Speaks since my grandchildren have autism.

12:07 PM  
Blogger Janet said...

It hurts to ready Tanner's story; I can barely imagine what it feels like to live it. Your love for him shines through your words so strongly.

I recently purchased a necklace with a simple message inscribed on it: I have everything that I need. I'm trying to remind myself of that fact, daily, and to be grateful for the many blessings in my life. Part of that exercise involves thinking of ways to make an impact in other people's lives. So I recently decided to support a local women's shelter with a monthly donation. It's not much but it feels good.

Please don't enter me into the draw for the camera, as ours works just fine. I wanted to let you know that I'm loving your pay it forward mantra.

1:32 PM  
Anonymous Anonymous said...

It's amazing how little it takes to turn someone's day around.

Thank you for this. For Tanner, and for all the kids and grownups who are unseen, for reasons of disability or differentness or something yet unlabeled.

I'm working on an anthology of writings of mothers with cancer. No profit, no fame. Just giving voice to their words.

4:55 PM  
Anonymous Anonymous said...

Funny thing. My first thought is: I want the phone. My second thought is: I don't need the phone.

So don't put me in the pot for it. I will just pay it forward for the opportunity to will the phone.

There are so many organizations that I love that need my money. There are people I know who need my help. But this time I am going to do something small and specific: I am giving the next needy person asking for help at a stop light $20. Don't care what they do with it. Not judging. Just giving.

Thanks for giving us a reason to stop and ask the question, how can I help today?

And please keep telling Tanner's story. I am invested now, and I know I am one among many.

5:24 PM  
Anonymous Anonymous said...

Funny thing. My first thought is: I want the phone. My second thought is: I don't need the phone.

So don't put me in the pot for it. I will just pay it forward for the opportunity to will the phone.

There are so many organizations that I love that need my money. There are people I know who need my help. But this time I am going to do something small and specific: I am giving the next needy person asking for help at a stop light $20. Don't care what they do with it. Not judging. Just giving.

Thanks for giving us a reason to stop and ask the question, how can I help today?

And please keep telling Tanner's story. I am invested now, and I know I am one among many.

5:24 PM  
Blogger Perksofbeingme said...

It's been a while since I last wrote. First of all, yes SC is South Carolina.

So far from everything I've searched through, I can't find a summer camp specifically designed for Muscular Dystrophy in Canada. I'm not giving up yet. I'm looking through some more resources to hopefully find something for Tanner. Please keep us updated and let me know if there is any way I can help.

9:30 PM  
Blogger Marissa said...

I will continue to mentor the people around me. I was a mentor to a young lady and recently she has gotten back in touch with me. I hope to reunite and start back up with the mentoring . It gives me a sense of pride to know that I was able to lead her down the right path and help her and her family. Thank you for sharing such personal stories that can be hard for some. Also thank you for the chance to win the giveaway :)

10:12 PM  
Blogger mo-wo said...

I have hit the point in Tanner's disease that I cannot believe it anymore. I try and will myself, not.

It is too small this disease, too rare for him. It must dissipate somehow.

Guilty as charged. I will seek blindness.

The camera is a hope.

11:12 PM  
Blogger Mary said...

He's so very beautiful, Catherine. I will first hug my children fiercely first thing in the morning. My sister in law just lost her husband. I intend to make the additional effort to help her through this time by sharing my children with her, spending time with her, and helping her in whatever ways I can.

My thoughts are with you and yours.

Mary Davis

11:14 PM  
Blogger Mom101 said...

Don't consider this an entry C - I want to pay it forward regardless.

But just wanted to tell you that he will never be able to hide completely; your words will make sure of that.

11:19 PM  
Blogger Rockin' Mama said...

I have a neighbor who has never been married and has no living family nearby. She is an older woman. I so enjoy spending time talking with her but haven't done it in so long. I want to reach out to her and visit and bring a meal and have her over for a meal and just make the fact that she is alone a little bit easier

jasonncaryn at yahoo dot com

11:21 PM  
Blogger The Spicers said...

What an incredibly moving post. I'm not commenting to enter the giveaway, but reading about Tanner inspired my to donate to the cause.

9:24 AM  
Blogger Mama Smurf said...

Just wanted to let you know that A close friend and neighbor of mine has MD and is also on a mission. I give to the foundation several times each year through her. Good luck on your mission. I wish you success.

2:43 PM  
Anonymous Anonymous said...

Your story brought tears to my eyes.
I have supported a child through Save the Children for many years but would increase my contribution to support more children in his community.


9:00 PM  
Anonymous Anonymous said...

Just catching up on some of your blog entries & I read this causing me to cry in my lunch. Just thinking aloud here, but do they have access to a support group for Duchenne's Muscular Dystrophy? If he does not already know other children who have it, it may help to meet some & become friends with them. Just thinking aloud...

1:29 PM  
Anonymous Anonymous said...

The photos are stunning, as is the story. The thought of Tanner having to suffer any more than he already does truly brings tears to my eyes.

8:17 PM  
Blogger Kim/2 Kids said...

I love how honestly and tenderly you write about Tanner. My sister is 14 years younger than I am and when she was three she was diagnosed with Neurofibromatosis and a brain tumor. She was blind by age 5 and now at 25 has the mentality of a 7yo. I vividly remember when she became self-conscious about her disability. I remember having lunch with her at school, she was in the 4th grade, and I said hi to a boy who had been at her 8yo bday party. I can smell the room, hear the laughter of the other children and feel my sister's embarrassment and it is almost 18 years later. I've always marveled at the strength of my mother. I now have my own children and my husband was diagnosed with Early Onset Alzheimer's Disease three years ago. The reality is that we all just muddle through the unfairness of life and hope to come out the other side a little more empathetic and kinder towards others. Thanks you for writing so honestly.

1:01 PM  
Blogger carrie said...

I feel like such a tool. I read your blog all the time and yet, Kyla had to point out to me after I wrote a post about my friend whose 12 month old son was JUST diagnosed with DMD and is seeking information/support/anything really, that this was the same diagnosis of your sweet nephew Tanner.

Sometimes me ol' brain just doesn't connect the dots.

I am so thankful that there are others whom I can refer my friend to, such as your sister and her organization - which may offer some solace since they are new to all of this and their son is so, so young. Only 12 months.

Thank you.

11:27 PM  
Blogger carrie said...

Here is the link to what I wrote, maybe someone here can help them too: http://www.stopscreamingimdriving.com/2009/02/hoping.html

Thank you again.

11:28 PM  

Post a Comment

Subscribe to Post Comments [Atom]

<< Home