Clockwatching, Redux

March 24, 2010

tannerToday, Tanner goes to the doctor. This is, in itself, nothing new – Tanner sees a lot of doctors – but today, he’s seeing the doctor so that they can start fumbling toward answers to difficult questions concerning when and how and how long. How long until his food needs to blended? Until he needs to be intubated? Until he can no longer sit up on his own? Until his lungs are compromised? Until he cannot breath on his own? Until my sister can no longer look after him on her own? Until, until…

The clock ticks so much louder now. Tanner’s condition is aggressive, relentless: his muscles are breaking down quickly, and as his muscles break down, so does hope.

My sister and I have never spoken in terms of hope. There’s no cure for Duchenne’s Muscular Dystrophy, and even though research goes forward, and clinical trials are run, Tanner has never been eligible for any experimental treatments, largely because of the nature of his genetic condition (he lacks the relevant gene entirely, and most research investigates the mutation of the gene. They refer to the lack of the gene as a deletion, which I’ve always found interesting and sort of sinister, like the gene was there at some point and then was taken away, erased, as if, when God was creating Tanner, he was plugging away at the code, tapping on a keyboard, and then was overtaken by some malicious whim, and hit backspace-backspace-backspace just at the chromosomal locus of Xp21, where the dystrophin gene is created.) So we’ve never spoken of hope, beyond the general hope that whatever years Tanner had would be good years, fulfilling years. But those years are dwindling, too quickly, far more quickly than we ever imagined – most boys with DMD make it at least into their early teens, but it will be a miracle if Tanner makes it to 12 – and the quality of those years is ever-declining, as Tanner loses his ability to do the things that he loves, the things that have sustained him since he lost his mobility, things  like drawing – trains and rocket-ships and dinosaurs – and plucking at a guitar and playing Nintendo.

And holding his own fork, and swallowing his own food, and keeping himself upright in his wheelchair.

We don’t speak about hope.

We speak about what we can do, what we can give him, how we can fill what remains of his life with joy, and we cry as we do, because there is so much that he wants to do – to take his cousins to Disney and introduce them to his favorite characters (that he could not join them at DisneyWorld was hard for him), to take a trip on a train, to swim with dolphins, to meet an astronaut – and so little time and so few resources and, always, the terrifying prospect that, soon, we won’t even be able to give him home, because as his condition worsens the harder it is for Chrissie to look after him on her own – the harder it is to lift him, to move him, to monitor him while trying to survive as a working single mom – and the more likely it seems that he’ll have to go into care and we cannot let that happen, we cannot, but we do not have magic and we do not have fairy godmothers, we have only our hands – and our feet – and our hearts and hearts, for all their worth, cannot work miracles. I don’t think. I don’t know.

All I know is, I have to try. I’m not sure how or by what means, but I have to try.

*I am still doing my 100 Miles For Tanner and I am still wearing tutus, although I am struggling against the inefficiency of it, and, yes, the seeming futility of it – there is hope to be drawn from raising awareness of DMD and helping raise money for research, but these days, for us, are dark, and hope for other boys feels – and this terrible, terrible I know – like such small consolation. But it is, still, hope – and raising awareness in Tanner’s name is something that will provide consolation as the days get darker still – and I will continue to pursue it, and hope that you will join me. But I need to do more, and I need to figure out how to do that, and it’s going to keep me up at night – it does keep me up at night – and so bear with me if I seem a little dark and cranky – darker and crankiER – in the coming days. Virtual hugs – and for Tanner, whatever kinds of prayers or good wishes are comfortable for you – appreciated.


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    { 63 comments }

    Natalie March 25, 2010 at 10:30 am

    Oh, wow. Just… wow. Know that you’re doing a great job… and everything that you can do.
    .-= Natalie´s last blog ..The Curious Incident of The Dog in The… Daytime? =-.

    Erin March 25, 2010 at 10:32 am

    I can not begin to imagine how hard this is for your family. Children should not go through things like this. I also understand the helplessness you feel, but through talking about it, you have given this craziness some sense of meaning. How many lives has Tanner touched with your help? Not many people have that in their “full” lives. Thank-you.
    .-= Erin´s last blog ..Honnestly… =-.

    Tanis Miller, RNM March 25, 2010 at 10:38 am

    I wish I could do something for him. I wish that he could know how much of an honour it was to meet him and be silly with him and how much I very much will always remember him and be thankful for his time.

    Her Bad Mother March 25, 2010 at 4:11 pm

    He knows, lady. He knows.

    Assertagirl March 25, 2010 at 10:46 am

    Tanner is such a beautiful kid, and although I have not had the pleasure of meeting him in person, it certainly seems like he is beautiful inside and out.
    .-= Assertagirl´s last blog ..Milestones across the miles. =-.

    Pat Furlong March 25, 2010 at 11:01 am

    Tanner is beautiful. And while I understand the heaviness of your heart, the attempt to predict his future, research is moving forward at an amazing pace with clinical trials in progress and in development. Tanner needs the best of care and with that care, his life span will be lengthened and the quality of his life improved. There are many young men with Duchenne in college and graduate school, living very full lives. You might consider participating in our annual conference June 24-27 in Denver, Colorado.
    Sincerely, Pat Furlong

    Her Bad Mother March 25, 2010 at 11:07 am

    Thanks, Pat. We follow the research pretty closely – it’s just been frustrating that there hasn’t been a clinical trial for which he’s been eligible. And since his steroid treatment was stopped (for very good reasons) his decline has been dramatic. I’ll look into the conference, though.

    Misty VanderWeele March 25, 2010 at 11:22 am

    Ive been reading your blogs and all that you do for your Tanner, the tutu part are there pics any where? :-) I also love everyone who has replied to you…My Luke has deletions 51-55 although the rest of the gene is there that is a pretty big gaping whole. I never thought he would live past 14 now he is 18 getting ready to graduate here in May and is planning college. Oh ya one more thing my Luke has never been on steroids of any kind (our choice)never qualified for any trials, I don’t even try anymore. I focus my energy on what I can do.. :-)

    Her Bad Mother March 25, 2010 at 4:15 pm

    Thanks so much for commenting, Misty, and for introducing me to Luke. It’s so wonderful to hear about boys who keep going and going and going. Is Luke still mobile?

    Chrissie took Tanner off steroids because they were psychologically devastating for him – he became a completely different boy – and he was so happy when they stopped. He finally felt “normal” – although the physical consequences were tremendous, he insists that he would never want to take steroids again.

    aqua March 25, 2010 at 11:12 am

    It breaks my heart. Such a beautiful boy. So unfair. You are so amazingly poised and graceful about this situation. I would be raging (unproductively and stupidly) at the unfairness of it all.

    Her Bad Mother March 25, 2010 at 4:16 pm

    Oh, I rage. I rage a lot. You only see the (sort of) poised side.

    ewe_are_here March 25, 2010 at 11:19 am

    “They refer to the lack of the gene as a deletion, which I’ve always found interesting and sort of sinister, like the gene was there at some point and then was taken away, erased, as if, when God was creating Tanner, he was plugging away at the code, tapping on a keyboard, and then was overtaken by some malicious whim, and hit backspace-backspace-backspace just at the chromosomal locus of Xp21, where the dystrophin gene is created.”

    Personally, it’s diseases like this, terrible, horrific diseases that strike down children for no apparent rhyme or reason, that cause me to think there really can’t be a god at all… because I just can’t believe that if there were one s/he could be so bloody cruel to children.

    I’m so sorry to hear that Tanner’s muscles are failing so quickly, so sorry. My heart goes out to all of you.
    .-= ewe_are_here´s last blog ..Thoughts on Trois =-.

    Her Bad Mother March 25, 2010 at 4:16 pm

    Yeah. It tries one’s faith.

    Susan March 25, 2010 at 12:15 pm

    Hugs and prayers to you all. I will hug my babies in honor of Tanner. I hope that she will find a way to spend as much of her time with him as she can and that by some miracle the decline will slow and she will have more quality time with him. Hugs to you all and prayers for Tanner.

    Leslie March 25, 2010 at 12:41 pm

    Catherine,

    I am so sorry to hear of Tanner’s decline. I am glad to hear that his family is rallying around him to give him as full a life as possible. One of my good friends has DMD and we never thought he would survive past 18. He is 32 now and, although confined to a wheelchair, is a practicing attorney with a fulfilling life. There is always hope…and my hopes are with Tanner and with your family.

    Her Bad Mother March 26, 2010 at 9:27 am

    So wonderful to hear about boys that get to live longer lives with DMD.

    Tanner won’t, though. Unless someone finds a way to reverse dramatic decline (he’s quickly losing the ability to even swallow) he’ll never lead anything close to a normal life, even if he does (miraculously) live longer than we expect.

    jodifur March 25, 2010 at 1:11 pm

    This is heartbreaking. I applaud all you are doing for your nephew and your sister.

    Judy March 25, 2010 at 1:13 pm

    I’m so sad for this lovely boy.

    I can’t think of anything more to say. Just seeing him on your blog has blessed us all.

    Amanda March 25, 2010 at 1:14 pm

    Thinking of you all.
    .-= Amanda´s last blog ..Our Time =-.

    Issa March 25, 2010 at 1:15 pm

    I wish I could do more than read your words and send hope to you and Tanner and your sister, but I’ve got nothing else to give.

    Huge hugs C.
    .-= Issa´s last blog ..18 months =-.

    Erin March 25, 2010 at 1:17 pm

    Thinking of you, praying for Tanner.

    patois March 25, 2010 at 1:18 pm

    Heartwrenching and heartbreaking and I’m so sorry for all of you to have to suffer, to have to feel so much grief and worry and all of it.

    A crankier you for a good cause is totally acceptable.
    .-= patois´s last blog ..Child Predators and Foxholes =-.

    Her Bad Mother March 26, 2010 at 9:28 am

    “A crankier you for a good cause is totally acceptable”

    Thank you. I wish that everybody got that.

    Ironic Mom March 25, 2010 at 1:22 pm

    Thanks for sharing Tanner’s story – in this post and on others. When I read about him, it’s a wake-up call to stop complaining about irrelevant details in my life and to start living fully. Wishing Tanner many, many more really good days.
    .-= Ironic Mom´s last blog ..To Buy a Pet, or Not To Buy a Pet =-.

    Lindsey March 25, 2010 at 1:23 pm

    Sending well wishes your way. I’m so sorry. Like others, I wish I could do something more than pray. If there’s anything… please let us know. xoxo

    Melissa March 25, 2010 at 1:27 pm

    Tanner and your family are in my prayers.
    .-= Melissa´s last blog ..Babies babies babies… =-.

    Keyona March 25, 2010 at 1:27 pm

    Praying for you and your family. He is a beautiful boy and you supporting him and your sister is awesome!
    .-= Keyona´s last blog ..Question Of The Week =-.

    Annie March 25, 2010 at 1:27 pm

    We lost my Dad to cancer two years ago, three months after he was diagnosed. The only thing he wanted to do was go to Vermont once last time. But he got sick too quickly and we were unable to get him there. I, too, felt helpless and willing to do anything to make his dreams come true. But it wasn’t possible. I’m so sorry that your family is suffering through this now. It’s so unfair that one so young will miss so much. Just remember that whatever you do to help him, it counts. It counts to Tanner and to Chrissie.

    Catherine March 25, 2010 at 4:27 pm

    That hopelessness when time seems to be running out too fast, yeah, that’s hard. Sucky hard. Racing against the clock.

    Hugs to you.
    .-= Catherine´s last blog ..Clockwatching, Redux =-.

    Angi March 25, 2010 at 1:27 pm

    I’m sending you love. And I will run in honor of Tanner this year, too. It can’t change what is, but people across the world love and pray for his peace because of you, your words and your dream to do something.

    Michelle Pixie March 25, 2010 at 1:33 pm

    I am so touched by your Tanner. I can tell just through your words what a beautiful soul Tanner is and I will keep him and your family in my thoughts and hope for things to make a turn for the better. He is very blessed to be loved by you but it sounds like you may even be more blessed to be loved by him. {{{HUGS}}}
    .-= Michelle Pixie´s last blog ..Isn’t It Lovely! =-.

    Ann March 25, 2010 at 1:46 pm

    I am so sorry. I cry with you.

    Lisa March 25, 2010 at 2:02 pm

    At a loss for words. So sorry to hear about Tanner’s decline. Sending prays, hope, love and support to you, your sister and most especially Tanner.
    .-= Lisa´s last blog ..Getting Your House Ready to Sell When You Have Kids =-.

    Ashley March 25, 2010 at 2:02 pm

    I have been reading your blog for the past few months and have yet to comment. But I have been following Tanner’s story, reading up on TuTu’s for Tanner, your 100 miles for Tanner and the posts you have decided to share with us all; and I have to tell you, my heart goes out to all of you. I wish there was something I could do. If I knew an astronaught, or had any ties to Disney, or had a magic wand, I would make everything for this little boy happen. But I can’t/don’t. So I feel like my hands are tied. My daughter will be 4 in the fall, and I have been blessed as a single mother that she is healthy and happy. I cannot imagine how difficult it must be for Tanner and his mother. But they are not alone. So, all the way from Halifax, I am sending prayers, throughs and only well wishes.

    Margaret March 25, 2010 at 2:41 pm

    Ditto so many who commented before me.

    ((you all))

    peace…
    .-= Margaret´s last blog ..#223 =-.

    Mary (BarnMaven) March 25, 2010 at 2:47 pm

    Situations like this, where things are so unbelievably NOT FAIR and so seemingly devoid of hope are the ones that make me want to have a long heart-to-heart with God someday. Tanner is in my prayers, as are all who love and care for him. There is nothing I can do to fix this or make it better. Know that I care.

    Catherine March 25, 2010 at 6:27 pm

    There’s nothing anyone can do to fix it. All there is is love.

    Thanks :)
    .-= Catherine´s last blog ..Clockwatching, Redux =-.

    existentialmom March 25, 2010 at 2:51 pm

    I read this post through tears. He is so beautiful, and I am heartbroken for your family. You are all certainly in my thoughts.

    Jennifer A March 25, 2010 at 2:52 pm

    I’m sorry and I pray for strength for you and Tanner’s family.

    Theresa March 25, 2010 at 4:03 pm

    Oh no, keep it up! You are doing SOMETHING and I can only imagine that, especially for your sister, it’s so so so much better than not doing anything.

    Keep talking to us about Tanner, about his illness, about everything!

    Praying for you and your family. Squeezing my kiddo that much harder tonight. xo
    .-= Theresa´s last blog ..Sucky Sugar Baby =-.

    Mom101 March 25, 2010 at 4:21 pm

    I agree with Ironic Mom – what a great message for all of us to count our proverbial blessings.

    Glad he’s surrounded by so much love. It just oozes through the screen.
    .-= Mom101´s last blog ..Could be worse. Could be a Hooters girl. =-.

    Stephanie March 25, 2010 at 4:27 pm

    You know I have to admit I was never really a huge fan of children until my sister had one of her own. My nephew is my pride and joy, reading Tanner’s story breaks my heart a little :( I can’t imagine how you must feel right now, or your sister for that matter. I’m sorry, I truly am. Being an aunt myself, I can totally relate to loving someone that much.

    Praying for your family, and there is always hope. It may not come in the form that we expect, but there is always something. <3

    Also screw the nay-Sayers, they just want attention honey, people are cruel and have nothing better to do.

    The Queen of Hyperbole March 25, 2010 at 5:39 pm

    Reading this pains me, sickens me. As a mother of a little boy, I cannot let myself imagine what Tanner must be going through. My thoughts are with Tanner, with your sister, with you, and with your whole family. May this all be as easy as it can be.

    goofdad March 25, 2010 at 6:03 pm

    There’s so much I want to say, and don’t know how. You’ve brought back memories, both painful and precious. You’ve made me re-examine my experiences, and how they’ve affected me over the years.

    Enjoy the moments for as long as you have them!

    Receive our prayers, both of you, for as long as you need them!
    .-= goofdad´s last blog ..Getting the laundry done =-.

    Brittany at Mommy Words March 25, 2010 at 8:27 pm

    Catherine – Your post makes my heart ache for you and your family and Tanner and makes we want to hug him and you and your sister and bring all those Disney characters to him!

    Enjoy the moments when you can – as hard as that may be.

    My own niece is struggling with a disease called Molybdenum Cofactor Deficiency – a disease that affects less than 200 people worldwise and that thusfar has not seen anyone survive past 2 years. I too spend hours on research that has come to nothing. Each case is different and with the disease being so rare there is not a lot of focus on finding a cure. London is currently 9 months olad and weighs only 10 pounds, less than my 9 week old. She cannot eat at all. She spends more time in hospitals than out.

    She and Tanner and other kids who are struggling and fighting for the precious moments of life are in my prayers every day.

    You are so capable of writing about your feelings. I am still trying to write about death as you challenged and also trying to write a post for London – to raise awareness. I only wish I had the beautiful words that you find!

    Sending a big hug to you too.
    .-= Brittany at Mommy Words´s last blog ..Violet Grace: Month Two =-.

    KYouell March 25, 2010 at 8:40 pm

    I think my husband and I baffled a lot of our family by not sweating our son’s Down syndrome diagnosis and being completely obsessed about the heart surgery that would be required to correct to defect. Our position was that you can live with Down syndrome, but not without your heart; their’s was that the heart defect was correctable, but Down syndrome has no cure. I still think our way of looking at it was right, especially through the lens of Tanner’s situation. Down syndrome just isn’t that big of a deal in the larger picture.

    I feel for Tanner’s mom. I don’t know how she can make it through the days. Then I remember how people say that to me about having a baby getting open heart surgery and, well, there just isn’t any choice is there? You put one foot in front of the other and walk your path. I’m glad she has you. Wish I had a sister.

    Take care.

    rachel March 25, 2010 at 11:57 pm

    You are doing an amazing job of supporting your sister, in every way you can. And by being open and honest about it, and by loving him so much, you are teaching your kids all the important things in life – about love and family and appreciating what you have and dealing with downright horrible circumstances. Will continue to send love and peace and wishes for more time…
    .-= rachel´s last blog ..Ninety One =-.

    Ginger March 26, 2010 at 12:45 am

    I agree with your commenter, and you, saying that trying to understand these things does try one’s faith. And how! My daughter has a rare genetic metabolic disorder – MCADD – and it can be dealt with as long as she never goes hungry, never gets hypoglycemic, then she’ll be OK. We didn’t know that on day two of her life, when she had a metabolic crisis and now has hemiplegic CP. Again, it tries your faith. Why my genetic code? Why my lovely daughter? Couldn’t I have given her greater gifts than a defective gene? But I did, I gave her the gift of life, and she gives me joy, and we just have to count our blessings when we can, and muddle through as best as we are able. I don’t have any more wisdom than that. I wish I did. My heart goes out to your family, Catherine.
    .-= Ginger´s last blog ..The Baby Bamboo – it’s for you! =-.

    Minnie March 26, 2010 at 8:20 am

    I am sending prayers to you and your family.
    I wish that I had more to say, or do, or give.

    Maggie, dammit March 26, 2010 at 10:42 am

    I grew up knowing a family whose beautiful son struggled with this disease. Several years after his diagnosis, his brother got the same news. Eventually, the family lost them both. Two sons, gone.

    I’m so sorry for all you are going through, C. Period. I’m grateful you’re bringing both awareness and funds, but take care of yourself please, too. Much love to you.

    xo
    .-= Maggie, dammit´s last blog ..Who do I think I am? =-.

    angelynn March 26, 2010 at 4:59 pm

    Tanner is lucky to have a family to fight so fiercely for him. To think of not having hope is devastating. I wish there was something that could be done. For him, and for your family. You are amazing and the way you have brought his story to light will help so many. Sending love your way…
    .-= angelynn´s last blog ..Fighting the current =-.

    Trillian March 26, 2010 at 7:33 pm

    I am so sorry to hear that Tanner’s DMD is progressing more rapidly. Have you thought of contacting Fatty at fatcyclist.com about raising some cash for the cause? I love his blog and if he can convince 500 idiots like me to ride 100 miles of Nowhere to fight cancer, maybe he can motivate his troops to help in this fight too. He seems like a great guy. BTW, is there a site like Livestrong for MD where people can set up donation pages? You and your family are in our thoughts!

    Her Bad Mother March 27, 2010 at 2:27 pm

    That’s a great idea – I don’t know him but it’s a great model to follow.

    Rebecca (Playground Confidential) March 26, 2010 at 9:43 pm

    Sometimes life is just fucking unfair. My heart goes out to you and your family.
    .-= Rebecca (Playground Confidential)´s last blog ..Five Ways To Eat Your Goddamned Breakfast =-.

    Jeannine March 27, 2010 at 1:29 pm

    you, your sister, Tanner are all amazing and an inspiration!! hugs to you all.

    Her Bad Mother March 27, 2010 at 2:27 pm

    Hugs back to you. Your support and goodwill means so much.

    habanerogal March 27, 2010 at 2:10 pm

    My next door neighbour when I was growing up had MD as well. I know how heartbreaking it is to watch a once very able boy succumb to this condition. You and the entire Bad Family have my support and thoughts as you all deal with this very unfair disease. Tanner you’re one awesome guy.
    .-= habanerogal´s last blog ..A Quickie Quitting Update =-.

    Rachel ~ Southern Fairytale March 27, 2010 at 2:47 pm

    Hugs to you my sweet, sweet friend.
    Prayers for all of you.
    xoxoxoxo

    The Child March 27, 2010 at 2:51 pm

    I have a friend with DMD who was told he wouldn’t make it past 5. He just turned 21. My friend had a wish fulfilled by Make-A-Wish. He still talks about how wonderful that experience was.

    It just totally sucks that there are good people in the world who don’t deserve that kind of sadness and pain.
    .-= The Child´s last blog ..Putting the Puzzle Together Part 2 =-.

    Dagmar Bleasdale March 27, 2010 at 7:39 pm

    Hi, I am so sorry to hear about Tanner’s condition. This must be so hard to go through, to see a little boy have to suffer this much. I am so sorry.

    Sending lots of hugs from New York,

    Dagmar
    Dagmar’s momsense
    .-= Dagmar Bleasdale´s last blog ..Our Kinder, Vegetarian Diet: Week 11 =-.

    Maggie May March 27, 2010 at 10:16 pm

    I am not religious but I do pray, and I’m praying for Tanner.
    .-= Maggie May´s last blog ..People In Your Neighborhood: Erica Weiner =-.

    Stone Fox March 28, 2010 at 11:52 pm

    my heart aches for you and for your whole family.
    .-= Stone Fox´s last blog .. =-.

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