Letters To A Dying Boy

January 19, 2012

(UPDATE BELOW) Tomorrow, Tanner will undergo a surgery that will, hopefully, prolong his life. But it’s a dangerous surgery, and he and his mom, my sister, have had to travel far from home and family for this surgery, and she’s scared, we’re all scared, and it’s hard. The struggle around the bullying before the holidays seems – for better or for worse – far away and insignificant; what matters now is that he get through this, that my sister gets through this, and that getting through this serves its purpose, that it yields more time with him, and good time with him.

Chrissie is scared, as I said, but she’s also resigned. In a good way, I think, which is to say, in a healthy way. It feels wrong to speak of resignation in the face of one’s child’s death as a good or healthy thing, but there it is. The better word, I guess, is acceptance. And acceptance is necessary, because Tanner’s fate will not change.

Still, still. It is so hard.

From Chrissie:

This is a test, a test of my strength and my family’s. Not of Tanner’s strength, he is the most courageuos person I know. He has not run marathons, nor done five Bikram classes in one day, and he can barely eat on his own now… but he is my HERO. I have done all of that in his name because I know the courage it takes for him and other children, who may not have DMD but who nonetheless face challenges, every day. Even on my worst day, I look at this gorgeous happy little man and I am in awe. Of the courage and strength and grace with which he faces each day. Mr Magoo, I love you.

Family is so important. I posted a picture today of mine, and out of the blue someone reminded me of how amazing my family was and is, the memories, of what molded me to be who I am… My parents, my sister, and all the of times we shared and laughed. My Mom and Dad gave my sister and I the world. They made us who we are. Thank you. Dad, you are always with us, with me. Mom, I can’t imagine a day where I cant talk to you… I strive to be that for my children. And to the friends in my life and the people I have met, I am blessed to have a list too long to name without making this note a few pages, but you know who you are.

And to Tanner, Booger, I love you. I know how hard it is every day for you. I know the courage it takes for you. To have lost your independance, slowly each day, to watch other children run and be free… I would lay my life down for you. So many people know you and love you..and others, well they will never understand the beauty and power of love. You have touched me and so many people… thank you, my baby. You were a cherub when you were born and you have blessed my life. xo

 

There are no words to add to that.

Please wish her love and strength.

UPDATE (from my mom):

Hi Cath
just talked to your sister – Tanner is out of surgery – he is in ICU but he appears to be okay.  He still has the breathing tube, but surgeon thinks it won’t be in too long. Tanner freaked out just before he went under – so his first words to Chrissi, after surgery, were “did I ask you if I was dead”.  In retrospect his freakout was probably good, because now the relief he feels about waking up is a big happy.
Love Mom
Your warm thoughts and well wishes and prayers have been and continue to be so, so appreciated. THANK YOU.
Here’s to big happys.

 

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    { 47 comments }

    Tricia January 19, 2012 at 12:52 pm

    The fight for a child is stronger than any other emotion. Beautiful letter. Sending good juju to you and Tanner from across the blogosphere.

    Bon January 19, 2012 at 1:01 pm

    i wish Tanner love, strength, and luck tomorrow. i wish your sister love and strength, and you, Catherine, and your mother and Tanner’s whole family.

    i understand how the story ends, eventually. i understand tomorrow will not change that. i think living courageously and with love in spite of staring down that black hole is extraordinary: i am still so terribly sorry Tanner has to be so extraordinary at such a young age.

    he is a beautiful boy. please give him our love.

    Her Bad Mother January 22, 2012 at 1:11 pm

    so much thanks for this, Bon, for articulating the tragedy of the extraordinary. xoxoxo

    KG January 19, 2012 at 1:39 pm

    Love to your entire family, Catherine. Hoping for the best for all of you.

    Emma January 19, 2012 at 1:46 pm

    Blessings to Tanner, Chrissie, and your entire family. Heartfelt wishes for success and more good time coming to all of you.

    Barb January 19, 2012 at 3:33 pm

    I have a grandson with CF … the struggles are just beginning. I can feel the love you have for your child and I hope that these small messages of hope that work for me will, in some way, offer you peace as well. 1) Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all. 2) Psalm 91:4 – He will cover you with HIs feathers. He will shelter you with His wings. His faithful promises are your armor and protection. 3) Isaiah 43: When you walk through the fire, I will be with you. And these waves, they shall not overcome you. For I am the Lord your God. I have called you by name. You are mine. God Bless You and Yours.

    Bec January 20, 2012 at 5:14 pm

    I’m sure you mean well, Barb, but what if the family isn’t religious?

    Frahn January 23, 2012 at 11:42 am

    The words are comforting and soothing to a hurting person, even if they aren’t in a religious family – just as any beautiful piece of writing uplifts and inspires us. I think the family would be happy to hear these gentle words, and whether they believe in the God of the Bible or not. :)

    Her Bad Mother January 23, 2012 at 12:23 pm

    Yes. This. Thank you, Fran.

    Rita @ Healthy Mom, Sexy Wife January 19, 2012 at 6:10 pm

    Such a touching story. I’m a new follower so I had to read a few posts to catch up. I pray that everything works out for the family. Having a disabled sister, I know the challenges that can arise. Many many blessings.

    Weight Loss Mother January 19, 2012 at 6:11 pm

    I will pray for Tanner that he makes it through the surgery

    Lori Zambito January 19, 2012 at 7:58 pm

    That’s a beautiful entry. I am very touched. I have two boys and can’t imagine how your sister must feel. Whenever I make a wish, it is for health, happiness and to outlive my children. My wish for your sister is the same. Good luck tomorrow to all of you.

    Lori Zambito January 19, 2012 at 7:59 pm

    for my children to outlive me….duh. that’s what I meant to say.

    Kim January 19, 2012 at 9:04 pm

    Praying. For Tanner especially, but for your entire family, too.

    Pgoodness January 19, 2012 at 9:43 pm

    Sending love and strength and peace to all of you.

    Bea_OT January 19, 2012 at 9:50 pm

    I wish Tanner a good surgery and speedy recovery. It’s terrible when our children hurt. My son suffered a stroke on the day he was born. It just seems wrong when our children suffer. It’s really hard as a single mother. She is so fortunate to have you as a support system. I don’t know what I’d do without my sis.

    Alexicographer January 19, 2012 at 10:00 pm

    Sending my prayers and wishes to Tanner, Chrissie, and all of you.

    Lily January 19, 2012 at 11:31 pm

    Wishing only good things–and only good news–after tomorrow. My thoughts and prayers are with you!

    Ladygoogoogaga January 19, 2012 at 11:56 pm

    I just read about the bullying and I am speechless…..I cannot believe this is how children have to grow up, surrounded by bratty assholes who’s parents are too self-involved and stupid to teach common manners and consideration to their children…..ugh.
    Sending prayers to Tanner and your family.

    http://lgoogoogaga.wordpress.com/2012/01/16/dear-beyonce/

    Amelia January 20, 2012 at 2:33 am

    Light and love to you all.

    Amy January 20, 2012 at 10:30 am

    I think of them often, and will continue to do so, especially today. Much love and strength to all of you, especially Tanner and Chrissie. xo

    Jennifer January 20, 2012 at 1:49 pm

    My son is 13 and has Duchenne. I so appreciate you & your sister sharing some of Tanner’s story. I cling to words of other mothers & families who face this disease…to feel less alone in this heartbreaking experience. My best hopes and loving thoughts go out to your sister, your family & especially Tanner.

    Jessica January 20, 2012 at 3:22 pm

    My thoughts are with you all today.

    Jessica

    Wanderlust January 20, 2012 at 5:11 pm

    Much love to you and your beautiful boy, Chrissie. Holding you both in my thoughts and prayers today.

    Karianna January 20, 2012 at 5:15 pm

    Lots and lots of love to your family.

    Amanda January 20, 2012 at 5:25 pm

    I’ve thought of Tanner and your entire family often, sometimes on account of your writing, other times seemingly unbidden. Wishing strength for your entire family and sending love and hope for some light for each of you, in all the days after today.

    Anon January 20, 2012 at 5:32 pm

    How about an update on the project that we all gave you money for and you never posted about again?

    Her Bad Mother January 21, 2012 at 10:44 am

    There were updates about that project last year, and there will be more, but they’re sporadic and quiet, and for a reason. As I’ve written here a couple of times, it’s been a difficult thing to write about, because of the private challenges that they face – although my life is public, and although I have made certain aspects of Tanner’s life public, his life and their lives are not mine to lay totally bare. And Tanner is more aware now of the public sharing of his life, and there are aspects of that are difficult for him, so. I am very, very careful about what I share here.

    The upshot is: because of the money raised, their basement has been adapted to allow full-time live-in assistance, which has allowed Tanner to stay at home for over a year longer (and counting) than he would have otherwise. It was not an easy process – in fact, it was an incredibly tumultuous and difficult process and one that disrupted their lives tremendously – and that’s a story that I have not figured out how to tell without violating their privacy, which is why I have only posted intermittently and vaguely.

    Lisse January 20, 2012 at 5:37 pm

    Wishing you and your family the best, hard as this all is.

    Jennifer January 20, 2012 at 5:37 pm

    My thoughts and prayers are with you and your family on this most difficult time. Wishing him a quick recovery and a long and healthy life.

    sherry January 20, 2012 at 7:32 pm

    Love to you, Chrissie and Tanner. XOXO

    Janice (5 Minutes for Mom) January 20, 2012 at 8:56 pm

    Tanner just blows me away with his incredible spirit and courage! Such an amazing little boy!!! LOVE, HUGS, and PRAYERS to you all!!!

    Tammy Land January 20, 2012 at 10:38 pm

    I can not begin to imagine what you are all going through, I can however tell you that you inspire me. The strength it must take to go through this with Tanner is unimaginable, and none of you could do it without each other. Wishing all of you, all the best. . . tonight is the 1st time I have cried in a long time. I am so touched by Tanner and his life. Prayers sent your way.

    Alli Worthington January 21, 2012 at 12:01 am

    SOBBING. I love that he fought. LOVE!

    Big love and whispered prayers to Chrissie & Tanner and your whole family.

    <3

    Missy January 21, 2012 at 1:23 am

    praying for Tanner and the whole family
    xoxo from Southern California….

    katie January 21, 2012 at 10:59 am

    I don’t think a day goes by for me without thinking of Tanner, he gives me a lot of strength and I just wish I could give back more than love, prayers, and positive thoughts. Love that boy and your family and relieved to read that update. xoxo to you and Chrissie

    Redneck Mommy January 22, 2012 at 5:47 pm

    Heartfelt hugs to you and your mom and of course, to Chrissie.

    But most importantly, wishes and prayers and happy thoughts sent on the wings of my angel to Tanner. Alongside a good fart joke of course.

    Much love to you all. It takes courage to stand at the edge of this abyss and keep moving forward. I wish to hell and back that none of you had to experience it yourselves.

    Pinay WAHM Blogger January 23, 2012 at 8:13 am

    I really wish they’re both doing okay now. It’s always hard to cope with circumstances like this especially if it means losing someone so important. I wish that all of you be strong and I know that together as one family, you can go through this.

    Jaelithe January 23, 2012 at 1:43 pm

    I am sorry to be late with my well wishes to you and Chrissie and Tanner. I am so relieved to hear that the surgery went okay. Please tell Chrissie I think of her often and I deeply admire her strength as a mother. She and Tanner inspire me to try harder to love life as it is, even as I wish for better. (I especially wish for better for Tanner.)

    Lori Zambito January 23, 2012 at 7:25 pm

    Thanks for the update. I was thinking about it this week. I’m glad he woke up and everything went well.

    Chrissie January 23, 2012 at 10:38 pm

    Thanks to all of you! There is power in love and faith and prayers! The way he came thru was nothing but a miracle the doctors say. He is home now, he is very tired and in some pain, but is breathing well on his own..it is one day at a time. Love to you.

    And to anonymous…I feel compelled to respond as my sister. It was me that put the project on hold last year…things were not well and I had some very hard decisions to make about about Tanner’s care and did not want to use the money raised if Tanner was not going to benefit from it…it didnt feel right, if we werent going to use it for him, the thought was perhaps it could help other children…so it was all held in abeyance until this spring when the care issues were settled. The renovation is almost done and Tanner is at home at can stay at home. My sister has respected our privacy through the very challenging past year but I will soon post a long story about the journey..and of course pictures of what has been done. But thank you for comment. And thank you to all of you that were a part of such a great thing, it took a bit of time but it did make a difference in his world! And mine. Cannot express the gratitude for all the wonderful people and support!

    Jennifer Martin January 24, 2012 at 5:21 pm

    It’s been a while since I have read your blog. Happy to hear that things went well. I have been thinking about you and your extended family for sometime.

    Jessica January 29, 2012 at 4:17 pm

    The first time I visited your site I read the post about Tanner and bullying and I have not been able to forget about him and the struggle he and your entire family face. I am so glad he came through surgery well and continues to be the fighter that he is.

    Daphne January 30, 2012 at 3:19 pm

    Oh, this makes my stomach hurt. I’m so sorry. Sending Tanner good vibes.

    Darlene de la Plata February 1, 2012 at 1:02 pm

    Fighting for our children extracts a strength from deep within we often did not even know was there to begin with until we became parents. My prayers are with your family … Tanner could write a story book for other kids going through similar life altering circumstances and in that way be a beacon for years to come … it could strengthen everyone it touches.

    kim February 2, 2012 at 7:21 am

    I am so touched by Tanner’s struggle, and your story has moved me beyond words. My heart goes out to you all. As a new reader, I caught up on your stories of the path you all have had to take against bullying, a subject matter dear to my heart. I hope we can do more to educate educators and move away from the defensiveness towards a place of healing. A new reader… and instantly a devoted one.

    Jacqui MacNeill (Escents Aromatherapy Essential Oils) February 2, 2012 at 6:13 pm

    I was moved to tears by the letter to Tanner. Children have such amazing strength in the face of adversity. It sounds like Tanner is no exception. My thoughts are with him and the entire family.

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