A Real Boy

July 27, 2010

pinocchio_poster_92_500Every visit to the doctor, now, brings bad news. In the early days, there were reassurances and messages of hope – some boys make it out of their teens, there are ways to slow the deterioration of his muscles, he might stay mobile for a long time, he might still get to enjoy some of his boyhood in the ways that other boys take for granted – but now, there are only somber descriptions of what will happen next, of what needs to be done to make things easier, of what use can be made of his diminishing time.

They want to put rods in his spine, she tells me. So that he can stay upright for a bit longer.

Rods in his spine. He won’t be able to bend, I think, before remembering, he cannot bend now. Not in the real, active sense of bending, anyway: he slumps, he droops, he slides forward in his chair, unable to hold his own weight even while sitting, a Pinocchio without strings. His spine is collapsing under the weight of his body, his muscles having deteriorated beyond the point where they can provide any support. He’s like a doll now, a puppet. But he has no strings by which he might be pulled up. He has no Blue Fairy to wave a wand and make such strings unnecessary. He has only surgeons, and rods.

Rods in his spine. I imagine steel, or rebar, those skinny ridged bars that are laid in concrete, because even concrete isn’t all that strong, even concrete needs extra support, and what are muscles compared to concrete? Even concrete sags, to say nothing of wood and fiber and the things of which dolls and puppets are made, to say nothing of people, made of flesh, made of muscle. This is not reassuring. This does not make me feel better. Muscles, concrete, steel, wood, puppets… this is a grim fairy tale.

I focus on the rods, of course, because they are so visual, so visceral, so evocative of things that are monstrous (Dr Frankenstein and his wires and bits) and things that technological (“we can rebuild him“) and things that are magical (Pinocchio’s stiff, wood-rod arms and legs, made flesh, made malleable, with one wave of a fairy’s wand). I focus on the rods, because they unnerve me, and because they are, in a twisted way, a symbol of some elusive hope. They will hold him up. They will support him. They will be his backbone, now that his God-given backbone has collapsed. They will defy God. They will hold him up, now that God is letting go.

******

His heart is going, too. They have him on medication, the kind of medication that they give to grown-up men, to men who have had heart attacks, to men who fall like thick trees, clutching their chests, lives flashing before their eyes. He is just a boy, and yet his heart is weakening, slowing, limping under the weight of years that he will never see.

I am trying to not think about that, because there are no rods for the heart.

******

The thing about the rods is, they represent, right now, everything that we worry we don’t have, everything that we worry we can’t give. Tanner’s body is failing and growing all at once; he becomes heavier and weaker, weaker and heavier, every day, and my sister struggles, alone, to care for him. To lift him is to lift limp bulk. Dead weight. Dead weight. She can’t do it alone. (What if he can’t die at home? — That can’t happen — But what if? — It can’t — What if?) She tries and she tries, but she is no Blue Fairy, she has no magic wand, only her arms and her back and her determination, and she fights with these, she fights through these, to lift her growing dying boy, and she is getting tired.

My heart breaks for her. My heart breaks for her, across and through and up and down and sometimes I worry that the pieces will shatter such that I won’t be able to put them back together and then where will I be, where will she be? There are no rods for the heart, but sisters can be rods, and I am trying to be hers.

It’s hard. I am not made of steel. And who wants to be, really? We want to be flesh and bone and blood and muscle. Our weakness makes us human. It is because of that weakness that we feel, that we ache, that we thrill. Pinocchio wanted that. Pinocchio did not want the wood, the strings. Pinocchio wanted to be real. Pinocchio yearned to be real.

We are real. Tanner is real. No amount of rods or heart medications or mobility devices can change that, but that means, too, that none of those things will save him.

Being real is precious, but it is sometimes hard to bear.

*******

I say there are no fairies, but that is not quite true, because so many are coming forward to help, to wave magic wands, wands that can’t give Tanner back his muscles, but wands that might give him, give us, strings. Please support these efforts, if you can – they’re outlined on my Tanner page, here, below his life list. (You can also follow updates on what’s happening by following the #TutusForTanner Twitter stream.) We need this magic. We really do.

And if you’re going to be in New York next week – or even if you’re not – will you wear a tutu? (FAQs on tutus at the bottom of this page.) It would be awesome if you would. I’ll be wearing mine all week. I might not be a fairy, but I can certainly do my damnedest to look like one.

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    { 50 comments }

    Marilyn (A Lot of Loves) July 27, 2010 at 3:58 pm

    How desperately I wish that by wishing hard enough for Tanner, your sister, and your family, I could stop this from happening. I do so wish that. Instead I donated to BHJ’s run, and I’m going to take a look at my wedding veil and see if I can convert it into a tutu.
    .-= Marilyn (A Lot of Loves)´s last blog ..How Not to Complete a Kids Craft =-.

    Catherine July 28, 2010 at 10:20 am

    @Marilyn (A Lot of Loves), your wedding veil? WOW. My heart just leapt. What an amazing idea!
    .-= Catherine´s last blog ..A Real Boy =-.

    Christina July 27, 2010 at 4:10 pm

    If love alone could heal him, he’d have the strength of Superman by now. This is happening way too fast, and my heart goes out to your family.

    My tulle is purchased for BlogHer and the tutu-making will happen this week. I may have purchased enough to make an extra tutu for anyone who forgets theirs, also.
    .-= Christina´s last blog ..Single Parents- I Salute You =-.

    Catherine July 28, 2010 at 10:21 am

    @Christina, there are some other bloggers making and exchanging and offering tutus, in the lobby of the Hilton Thursday afternoon, if you end up with extra. Or, tweet that you might have extra, for someone who needs it (I’ll retweet, of course!)
    .-= Catherine´s last blog ..A Real Boy =-.

    Ceece July 27, 2010 at 7:27 pm

    While you are a rod for your sister, know that we are all sending thoughts and prayers your way and hopefully it helps.

    Catherine July 28, 2010 at 10:22 am

    @Ceece, you guys are MY rods.
    .-= Catherine´s last blog ..A Real Boy =-.

    Jean Layton July 27, 2010 at 7:49 pm

    Each of you are the support for the others, and the larger community will be your support as well.
    I look forward to giving you all the hugs and support I can while I am at BlogHer.
    If anyone thinks that they might not have time to make their tutu till Thursday, we will be creating them in the lobby (or my room if I can check in early) in the Hilton Thursday afternoon.
    I’m crafty Michaels and get 2 rolls of tulle ribbon and a roll of 1/2 colored ribbon.

    What is Tanners favorite color?

    Jean Layton July 27, 2010 at 7:53 pm

    Each of you are the support for the others, and the larger community will be your support as well.
    I look forward to giving you all the hugs and support I can while I am at BlogHer.
    If anyone thinks that they might not have time to make their tutu till Thursday, we will be creating them in the lobby (or my room if I can check in early) in the Hilton Thursday afternoon.
    I’m crafty so go to Michaels and get 2 rolls of tulle ribbon and a roll of 1/2 colored ribbon.
    I’ll help anyone who needs help till 3:30 make a Tutu for Tanner.
    What is Tanners favorite color?

    Her Bad Mother July 27, 2010 at 8:35 pm

    So awesome!

    Tanner loves blues and reds. Boy colors ;)

    I’ll spread word around about the tutu clinic at the Hilton!

    Keyona July 27, 2010 at 7:54 pm

    Prayers to you all. I won’t make it to NY but I can rock my tutu here in DC. Hugs.

    Catherine July 28, 2010 at 10:22 am

    @Keyona, take pictures! send them to me!
    .-= Catherine´s last blog ..A Real Boy =-.

    Jeannine July 27, 2010 at 7:57 pm

    Your strength is amazing and beautiful like you are! I will proudly wear my tutu in LA next week (sadly won’t be in NY). Much love to you and your sister, two of the strongest, loveliest fairies ever. And love to Tanner! xoxo

    Catherine July 29, 2010 at 10:31 am

    @Jeannine, love right back to you :)
    .-= Catherine´s last blog ..Thus Spake The Soon-To-Be-Soaked Toddler =-.

    paige July 27, 2010 at 8:18 pm

    There are just no words for this. I am aching for your family.

    zchamu July 27, 2010 at 8:25 pm

    It’s not right. It’s not fair. It shouldn’t happen to any child. Or any family. Big hugs to all of you.

    Amy July 27, 2010 at 8:33 pm

    I’m so sorry, Catherine. Nothing to say that can help, but love to send to you from here to there.
    .-= Amy´s last blog ..Notes From The Road =-.

    TheKitchenWitch July 27, 2010 at 8:33 pm

    I’ll be there, in my pink meringue tutu–for Tanner. xoxo
    .-= TheKitchenWitch´s last blog ..Seared Salmon with Jalapeno Ponzu =-.

    Catherine July 29, 2010 at 10:31 am

    @TheKitchenWitch, ‘pink meringue’ makes me want to eat it. mmm, tulle, nom nom nom.
    .-= Catherine´s last blog ..Thus Spake The Soon-To-Be-Soaked Toddler =-.

    Beth July 27, 2010 at 9:00 pm

    I think that Katie (my 20 month old) and I can manage to pull our tutus out for Tanner even though we won’t be in New York. Is there a specific time or something that we should wear them or just wear them throughout the time of BlogHer?

    You have all our love and support as does your sister and Tanner.
    .-= Beth´s last blog ..Top Ten- B90Days So you’re behind- now what =-.

    Catherine July 29, 2010 at 10:33 am

    @Beth, we’re setting up a FB fan page and event so that everyone can follow and know when to don the tutus, etc.

    Basically, though: anytime is good (take pics and share them!) but the actual run will be from about 6:15am to 7:30am EST next Friday morning, if you want it to coincide. I’ll be wearing tutus from Wednesday to Sunday, though ;)
    .-= Catherine´s last blog ..Thus Spake The Soon-To-Be-Soaked Toddler =-.

    yknot July 27, 2010 at 9:22 pm

    Hi All,
    I am going to some oF the parties @ Blogher to meet & have a laugh with some and or all of you! I need a boy-type Tutu to wear while I am there to honor tanner & support him. Please email me: wildbillATfdnyemsproDOTcom if you can help me. Sure, I won’t be the Eye Candy. But I believe I’ll be the Best-Dressed man in the room! Thanks! And I really hope we get.to meet!

    elz July 27, 2010 at 9:41 pm

    I’m not going to BlogHer, but I will wear my tutu. My heart is with you and your family. My prayers too.
    .-= elz´s last blog ..Last Crafty Fairy Party Favors =-.

    Another Suburban Mom July 27, 2010 at 10:00 pm

    I am not able to go to blogher, but I will be there in spirit. My thoughts and prayers as always go to your family and especially Tanner
    .-= Another Suburban Mom´s last blog ..Shuffle Game =-.

    Maggie May July 28, 2010 at 12:42 am

    It’s very hard to know what to say to this kind of horrible situation- even the word situation seems diminutive- it’s not a situation, it’s Tanner, a boy. I wish that the collective mother love could heal him.
    I’m so sorry. I wish I could help. I can donate a little, that is all I can do and I will do it.

    I can also do a blog link to your page and donations, I’ll do that to in the next day or two.
    .-= Maggie May´s last blog ..Lola Moon- Summer 2010 =-.

    Catherine July 29, 2010 at 10:33 am

    @Maggie May, thank you so much!
    .-= Catherine´s last blog ..Thus Spake The Soon-To-Be-Soaked Toddler =-.

    Tempest Ahoy July 28, 2010 at 1:11 am

    My heart breaks for you. I wish I could find the words that could make it better, make it ok, but I just can’t. Nothing could. This sucks, so awfully. Tanner is blessed to have you all, and you all have been blessed to have him.

    Rachael July 28, 2010 at 3:29 am

    So heartbreaking… I can’t even imagine it. Prayers for peace for you and your sister, your whole family really.
    .-= Rachael´s last blog ..Picture this =-.

    Francoise Nelmes July 28, 2010 at 9:06 am

    You have such an encouraging blog! Please keep it up! God bless.

    kelly @kellynaturally July 28, 2010 at 9:08 am

    Thank you for sharing your own magic for words, Catherine, to spread the word.

    Putting my thoughts out there for Tanner, you, and his family. ((hugs))
    .-= kelly @kellynaturally´s last blog ..Going Vegan =-.

    Digitalpagan July 28, 2010 at 10:31 am

    While I won’t be in New York for BlogHer, but I’m going today to pick up my supplies so I can rock a Tutu for Tanner next weekend in New Orleans. It’s not much, but it’s my way of showing my solidarity. I will pass on his story to everyone who asks me why I’m wearing a homemade tutu. He is a special boy with a special family, you will always be in my thoughts.

    Her Bad Mother July 28, 2010 at 11:39 am

    THANK YOU.

    Rachel July 28, 2010 at 11:22 am

    I can’t comment on the meaning, because it’s too painful, but I can say this is a beautiful piece of writing. And the Pinocchio metaphor is so perfect, in all the ways you flipped it around and looked at it. Hugs and strength to your family.

    Rebecca Brown July 28, 2010 at 11:22 am

    I think there are a couple of tutus lying around Bunch HQ left over from various photo booths. Will bring to NYC. Dibs on the purple one.

    Her Bad Mother July 28, 2010 at 10:24 pm

    the more tutus, the better ;)

    DianaCLT July 28, 2010 at 2:54 pm

    I make fairy skirts. Most call them “tutus,” but that’s not really my style. Would love to make you a blue fairy skirt, if you’d like. I can’t be at BlogHer or the run, but would happily send one or two your way, if you’d like.

    My prayers are with Tanner, with your sister and you, and all who love all of you. Cannot fathom what you go through. But my heart breaks at the aching in your words. And is touched by the love you express, and the love expressed to you, in the comments. <3

    Her Bad Mother July 28, 2010 at 10:24 pm

    That would be amazing. ‘Fairy skirts’ – love love love.

    THANK YOU.

    St. Louis Smart Mama July 28, 2010 at 3:35 pm

    I have sisters, and I can’t imagine how hard it would be to watch one of them go through something like this. Your strength is inspiring and she is so lucky to have you!

    Lauren July 28, 2010 at 9:53 pm

    I’m not really the praying type, but I have been and will continue to send positive energy to your family. I’m not a blogger, but I hope it helps that I have spread the word to my friends and family to ask for their thoughts to go to Tanner, too.

    Rowena July 29, 2010 at 3:58 am

    I love your blog and have nominated you for the versatile blogger award!! :) Check it out! :)

    http://crunchynutmama.blogspot.com/2010/07/yeah-baby-i-am-versatile.html

    Catherine July 29, 2010 at 10:34 am

    @Rowena, thanks! will check it out!
    .-= Catherine´s last blog ..Thus Spake The Soon-To-Be-Soaked Toddler =-.

    Donna July 29, 2010 at 9:07 am

    I keep reading these updates of yours and wishing this weren’t happening. My heart is breaking for your sister. I just can’t even imagine what she’s going through. Prayers her way, and yours.

    Angella July 29, 2010 at 11:46 am

    All of my nieces and nephews are visiting right now and while I always love them, spending time with them makes me love them even more…and makes my heart hurt even more for you. I can’t imagine one of them going through this, or one of their parents going through this.

    Love and hugs, Catherine.
    .-= Angella´s last blog ..On The Edge Of The World =-.

    red pen mama July 29, 2010 at 2:27 pm

    Oh, dear. God’s not letting him go, sweetie; S/He’s getting ready to welcome him. It’s definitely bittersweet.

    For a household with two girls, I have a remarkable lack of tutus laying around. I will have to do something about this, obviously.
    .-= red pen mama´s last blog ..Random Thoughts- Pregnancy Ramblings =-.

    Catootes July 29, 2010 at 3:00 pm

    I’ll wear a tutu next week, even though I will not be going to NY.
    I will wear a tutu because I know how it feels to try and be a rod to a sister who’s heart is breaking under the weight of a dying son.
    I will wear a tutu because I know what it feels like for my heart to break watching my nephew diminish before my eyes, knowing that there are only months/weeks/hours/days before there is nothing left the medical community can offer him
    I will wear a tutu for you, for your sister and for Tanner.
    .-= Catootes´s last blog ..she says =-.

    Her Bad Mother July 29, 2010 at 3:26 pm

    xoxoxoxoxoxo

    (no words. just, thank you.)

    Lona July 29, 2010 at 3:47 pm

    I’ll wear a tutu as I go about my daily life, as I am not going to be in NY. But I will be traveling from Georgia to Florida, and I will be thinking of you and your family.

    I posted a link to this on my blog. Hope that’s okay.
    .-= Lona´s last blog ..I am not responsible for the whereabouts of my pants =-.

    Her Bad Mother July 29, 2010 at 9:08 pm

    Of course that’s okay. THANK YOU.

    feefifoto August 3, 2010 at 7:11 pm

    I am tutu glad to see the funds are building, especially the building fund. All the best to you and your family.
    .-= feefifoto´s last blog ..My Mistake – We Do Have Bananas =-.

    feefifoto August 4, 2010 at 7:37 pm

    Yay – you made it, and beyond.
    .-= feefifoto´s last blog ..Major Melodrama Over Aptitude Testing =-.

    Anna August 6, 2010 at 3:55 am

    Hey you made national news ! Kudos on getting Tanner’s wheelchair fixed AND DISNEY ! Wooohoooo

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