The Invisible Boy

January 21, 2009

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.


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    { 160 comments }

    Mr Lady January 21, 2009 at 2:44 pm

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

    Michelle January 21, 2009 at 2:52 pm

    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.

    Miss Grace January 21, 2009 at 2:53 pm

    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.

    Steph January 21, 2009 at 2:55 pm

    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!

    Perksofbeingme January 21, 2009 at 2:59 pm

    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.

    http://perksofbeingme.blogspot.com/search/label/mda

    Issas Crazy World January 21, 2009 at 3:04 pm

    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.

    Chantal January 21, 2009 at 3:04 pm

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

    Karen January 21, 2009 at 3:09 pm

    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.

    Karen January 21, 2009 at 3:10 pm

    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.

    Mommy Melee January 21, 2009 at 3:10 pm

    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.)

    G Love January 21, 2009 at 3:13 pm

    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.

    Her Bad Mother January 21, 2009 at 3:15 pm

    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.

    xxoo

    Merrily Down the Stream January 21, 2009 at 3:25 pm

    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.

    Petra a.k.a The Wise (*Young*) Mommy January 21, 2009 at 3:45 pm

    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.

    Jana January 21, 2009 at 3:46 pm

    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.

    Michelle January 21, 2009 at 3:50 pm

    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.

    Amy @ Milk Breath and Margaritas January 21, 2009 at 3:52 pm

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

    Nadia January 21, 2009 at 3:56 pm

    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.

    Sarah Lena January 21, 2009 at 3:59 pm

    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.

    emily the mom January 21, 2009 at 4:01 pm

    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…..

    Mr Lady January 21, 2009 at 4:03 pm

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

    Sarcastica January 21, 2009 at 4:06 pm

    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.

    Anissa Mayhew January 21, 2009 at 4:08 pm

    Yeah.

    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.

    bejewell January 21, 2009 at 4:09 pm

    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.

    CatrinkaS January 21, 2009 at 4:10 pm

    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.

    Morganna January 21, 2009 at 4:12 pm

    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}

    Goldfish January 21, 2009 at 4:23 pm

    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.)

    Don Mills Diva January 21, 2009 at 4:35 pm

    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…

    Don Mills Diva January 21, 2009 at 4:37 pm

    Oh and no phone for me – there are surely people who need it more…

    Catherine January 21, 2009 at 5:23 pm

    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.

    The Musings of The Momma January 21, 2009 at 5:24 pm

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

    ewe are here January 21, 2009 at 6:23 pm

    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.

    Tree January 21, 2009 at 6:50 pm

    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.

    lalana January 21, 2009 at 6:51 pm

    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.

    Mary Moore January 21, 2009 at 7:15 pm

    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.

    Jeri January 21, 2009 at 7:37 pm

    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.

    Kelley January 21, 2009 at 7:42 pm

    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.

    Her Bad Mother January 21, 2009 at 7:43 pm

    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.

    geenalyn January 21, 2009 at 8:45 pm

    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.

    iMommy January 21, 2009 at 9:08 pm

    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.

    Mandy January 21, 2009 at 9:17 pm

    A heartbreaking story…

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

    jodifur January 21, 2009 at 10:07 pm

    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.

    Meritt January 21, 2009 at 10:09 pm

    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! :)

    Kim January 21, 2009 at 10:15 pm

    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.

    Stimey January 21, 2009 at 10:35 pm

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

    Bronnie January 21, 2009 at 10:43 pm

    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.

    Perksofbeingme January 21, 2009 at 10:44 pm

    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.

    Anne January 21, 2009 at 11:30 pm

    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.

    ImakehairROCK4u2 January 21, 2009 at 11:36 pm

    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!

    Rachael January 21, 2009 at 11:42 pm

    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)

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