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 }

    nape January 23, 2009 at 1:50 am

    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.

    Mrs. Vladdevlor January 23, 2009 at 4:32 am

    Hi HBM,
    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..

    Anonymous January 23, 2009 at 7:48 am

    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.

    columbia

    katesaid January 23, 2009 at 10:19 am

    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…

    Caitlin January 23, 2009 at 11:07 am

    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.

    Katie January 23, 2009 at 11:39 am

    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.

    Helen January 23, 2009 at 12:41 pm

    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!)

    Georgia January 23, 2009 at 1:14 pm

    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.

    just a kat January 23, 2009 at 1:17 pm

    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…

    kat

    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)

    Ginny January 23, 2009 at 1:21 pm

    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.

    Blessings.

    ginnyswe at gmail

    Crystal January 23, 2009 at 1:24 pm

    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.

    Magpie January 23, 2009 at 1:40 pm

    Heartbreaking. Thank you for continuing to tell his story.

    Alice H January 23, 2009 at 1:45 pm

    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

    sara January 23, 2009 at 3:17 pm

    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. :(

    JoAnne January 23, 2009 at 3:39 pm

    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

    Amo January 23, 2009 at 5:46 pm

    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!)

    Momo Fali January 23, 2009 at 6:16 pm

    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.

    Seeryus Mama January 23, 2009 at 6:28 pm

    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!

    seeryusfam@msn.com

    the botticelli babe January 23, 2009 at 8:00 pm

    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.

    Joshua's Dad January 23, 2009 at 8:05 pm

    I will give my current phone to someone in need.

    Sharla January 23, 2009 at 8:25 pm

    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?

    anniemom January 23, 2009 at 8:42 pm

    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.

    Mommyhood is Thankless January 23, 2009 at 9:59 pm

    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

    mommyhoodisthankless{AT}gmail.com

    Her Bad Mother January 23, 2009 at 10:04 pm

    Sharla, yes – my nephew, my sister’s son.

    The Grown Up Teenager January 23, 2009 at 10:34 pm

    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. :)

    Keilann January 23, 2009 at 10:58 pm

    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…

    teq7(at)hotmail(dot)com

    Keilann January 23, 2009 at 10:59 pm

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

    sara January 23, 2009 at 11:30 pm

    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…

    tiff January 24, 2009 at 9:14 am

    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.

    texan_michael(AT)yahoo(DOT)com

    deb January 24, 2009 at 9:14 am

    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.

    Susanne January 24, 2009 at 9:22 am

    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.

    Erin January 24, 2009 at 7:17 pm

    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.

    Domestic Extraordinaire January 24, 2009 at 9:53 pm

    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.

    (((hugs))))

    Omaha Mama January 24, 2009 at 10:58 pm

    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.

    Her Bad Mother January 24, 2009 at 11:15 pm

    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.

    Lady M January 25, 2009 at 1:08 am

    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.

    sydneysmommy0 January 25, 2009 at 1:48 am

    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
    april_epperson(at)yahoo.com

    MISA January 25, 2009 at 4:14 am

    Hello!
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    Leah January 25, 2009 at 5:30 am

    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! : )))

    Leah.

    leahita[at]gmail[dot]com

    just mom January 25, 2009 at 7:41 am

    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.

    Brooke January 25, 2009 at 11:42 am

    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!

    KellyC January 25, 2009 at 12:10 pm

    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.

    bnmga(at)sbcglobal(dot)net

    Connie January 25, 2009 at 1:07 pm

    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.

    Janet January 25, 2009 at 2:32 pm

    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.

    WhyMommy January 25, 2009 at 5:55 pm

    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.

    Heather January 25, 2009 at 6:24 pm

    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.

    Perksofbeingme January 25, 2009 at 10:30 pm

    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.

    Marissa January 25, 2009 at 11:12 pm

    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 :)

    mo-wo January 26, 2009 at 12:12 am

    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.

    Mary January 26, 2009 at 12:14 am

    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
    marydaviswrites@gmail.com

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