January 6, 2009

Last night, I curled up in bed with my little girl. She lay her head against my arm and gripped my fingers with her tiny hand and whispered, I want you to stay here, Mommy.

Yes, I said. I want you to stay here, too.

And then I rested my cheek against the crown of her head and closed my eyes and inhaled the sweet, soapy smell of baby shampoo, felt the silk of her hair, heard the whisper of her breath and I thought, I want you to stay here, like this, always, curled against me, warm, safe. And I thought, I want you to stay here, like this, for years and years to come, until the days when you and I no longer fit together in this wee bed, when you are grown and I am old and your arms are the stronger. When we will still find comfort in each other. When you will still be my baby, only grown.

I thought these things, and I looked up at the clock atop her dresser and watched as the minute hand took one deliberate click forward. I looked up at the clock and I wondered, how would it feel if I were counting these minutes? These hours? These days?

It is not possible to hold a child too close, or for too long.

A family lost a child this week. Maybe it was the famous family, the one that we are all reading about it and talking about. Or perhaps it was another family, a family unknown to us, a family in Burma or Kinshasa or the Gaza Strip or Oshawa, Ontario or Saguenay, Quebec. Perhaps it was many families; perhaps it was many children. We lose count; we stop paying attention. We stop paying attention, unless the child is lost to someone that we know, someone that we know of. Then we remember. Every hour of every day, somewhere, someone suffers what we fear most. What I fear most.

My family is losing a child. Our loss is not sudden; it will not be unexpected. It’s a slow loss, but an inevitable loss; the hands of the clock tick forward slowly, deliberately, inexorably. We count on those hands ticking slowly; we measure their movements carefully, reassuring ourselves that the pace holds steady, that there is no leap forward, that this particular clock never advances an unnecessary hour, that our days hold ample daylight. It’s a slow loss, but an inevitable one.

We are better off, of course, for the trickling pace of this loss. We have many days, many hours, with this child. Not near as many as we would like, but still: we have time to spend and cherish, time to postpone our goodbyes and to pretend that their place on the horizon will hold its distance. My sister can wrap her body around Tanner’s and feel the beat of his heart and the warmth of his breath; she can brush her hand across his forehead and whisper in his ear and assert her love for him in the now and know, as surely as his hand tightens around hers, that he hears her, that he knows. But the clock ticks over her head – over his – and she counts these hours, these minutes, these seconds. Every movement of the minute-hand is a movement lost, a moment lost, one minute less in a cherished life that is measured by the clock.

My mother called on Christmas Eve, a thick edge to her voice, the edge of a third glass of wine, the edge of regret seeking reassurance. I miss you so much, she said. I miss Emilia, and Jasper. I’ll bet Emilia’s so excited for Santa. She laughed, uncertainly. I wish we could be together. I wish I could be there, I would move there in a heartbeat, but I can’t be there, because I need to be here, with Tanner. A pause. He’s really gone downhill. He’s declining really quickly. He’s not going to last more than another few years, maybe. Another pause; the clink of a glass. After he’s gone…

- I know.

After he’s gone…

- I know.

After Tanner is gone, time will stop, and then it will start again, without him. I don’t like thinking about this. I was upset with my mother for reminding me of this on a night that I wanted to spend in thrall to the optimism of Christmas – fear not, for behold: I bring you good tidings of great joy, which shall be to all people – and to the sweet prospect of waking up to tiny pajamaed children filled with glee. I wanted my own now, free of sadness, free of the prospect of death, free of fear of that black hole of timelessness opening up and swallowing us all. I wanted to not walk through the valley of the shadow of death. I resented my mother for pulling me alongside her in her stroll. And that was wrong.

It was wrong because I am so, so fortunate to be able live my life with my own children, free of the clock, free of the incessant clang of the tolling bell, free of the the hourglass, the blind sands – free, at least, in my ignorance of, my deafness to, the tick, the clang, the passage of the sands that mark the time that passes for each of us. It was wrong because I am so fortunate, and I need to remain mindful of, and grateful for, that fortune. I can hold my daughter or my son and not think, here passes one more moment, here we move one step closer to death, here is one less embrace that we will share. I have a life with them, a now with them, that is free of visible shadows. I am blessed. And I am insufficiently appreciative of this blessing.

I pay little mind to the time that passes with my own children, apart from vague reflections upon the pace of their growth and the fleeting beauty of their babyhood. I mark Tanner’s time, I count it on my fingers and toes, I spend hours, awake at night, calculating how many more visits we have, how we shall spend those visits, how best we might use our time, how we might take time and wrest timelessness from it, in the form of memory. But I forget to mark the rest of time; I forget that I do not have infinite stores of time to spend with my children; I forget that the bell tolls as much for us as it does for Tanner, the only difference being that we do not know when its tolling will stop.

I do not pause often enough; I do not often enough stop and hold my children, just for the sake of holding on. I do not take as much time as I should to just hold them and listen to their hearts beat and feel their breath upon my cheek and their hands warm within my own and hear the tick of the clock – feel the tick of the clock – and be grateful for every. single. second. In ignoring time, I am doomed to lose it. I need to take time, take measure of time, give thanks for time, for whatever stocks of time that I am blessed to have. With Tanner, with Jasper, with Emilia, with all whom I love and with whom I wish to have more time, always more time.

Hug your children today; hug them, and let time stop, and then, when it starts again? Thank the heavens for it.


My sister, Chrissie, will be running, this weekend, in a marathon to raise money for Duchenne’s research. There’s no cure for Duchenne’s, but there’s always hope, and Chrissie is running, as always, for this hope. With my words, I can cheer her on, and I can ask others to cheer, and to help by cheering and to cheer by helping.

You can donate in Tanner’s name HERE. It probably won’t change the ending to this story, but it will help the narrative maintain a recurring theme of hope. And that, right now, is all.

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    Pgoodness January 6, 2009 at 10:58 pm

    Can’t seem to swallow past this lump in my throat. Thank you. My thoughts and prayers are with you and your family, especially your sister. Every moment matters and this just brings it home.

    Momo Fali January 6, 2009 at 11:05 pm

    I lost a cousin to MD. He was like my brother. He died 17 years ago and I still think about him constantly. He will be with me every second, every minute, every bit of time I have left on this earth.

    In the past few years, I have also lost a niece who was 11 months old, a classmate of my son’s died just after his 5th birthday from a sudden illness, and a three year old was run over and killed in our preschool’s parking lot. I can not imagine the pain these parents live with. It is heartbreaking to lose a child for any reason.

    Jamie January 6, 2009 at 11:26 pm

    I have tried to leave a comment here a few times about this post but I am at a loss for words. This was an amazing post – Thank you for sharing and making us remember the important things.

    Corina - Down to Earth Mama January 6, 2009 at 11:36 pm

    I am so sorry that you must count the minutes. Your beautiful writing is a testament to Tanner. Thanks for the reminder to hug my children a little tighter today. Today, it was like Lord of the Flies here, and I was ready to simply lie down in the middle of the road screaming. You help put in all in perspective.

    Alpaca Farmgirl January 6, 2009 at 11:36 pm

    Thanks for that beautiful post. You are such a gifted writer. It has been awhile since I have felt the existential angst that this piece brings back for me. When I was a psychologist working with pediatric AIDS patients, those feelings resonated with me daily.

    My New Year’s Resolution was to spend more time with my kids doing fun things and cherishing the “moments” we have together. Your post will spur me on to do just that. Grazie.

    Anonymous January 6, 2009 at 11:39 pm

    that was beautiful/sad and makes me think about my own life. My children often complain that I spend too much time on the computer and I actually get mad at them when they mention it. Thank you for the reminder. Our children are precious. My heart goes out to you & your family. TP x0x

    Misfit Hausfrau January 6, 2009 at 11:50 pm

    What a sweet/sad post. Our friend’s son has Duchenne as well. His entire family is heading to Disney tomorrow to run the marathon for Danny. And we are all going to support them in any way we can:

    Her Bad Mother January 7, 2009 at 12:05 am

    Misfit Hausfrau – my sister and Tanner are going to be there as well – she’s running the marathon. Wish that I could be there!

    mothergoosemouse January 7, 2009 at 12:22 am

    This post itself, and so many others that you’ve written, demonstrate just how much you recognize your fortune.

    I so wish that Tanner’s story would have a different ending.

    Amy@Bitchin'WivesClub January 7, 2009 at 12:32 am

    Beautiful, thoughtful, ruminative piece. I’m so sorry for your family’s pain.

    Musings of a Housewife January 7, 2009 at 8:22 am

    Wow. I have nothing to say but I wanted you to know that I’m reading and my heart breaks for your sister and your family.

    Anonymous January 7, 2009 at 8:55 am

    So true, so well written, so tragic. Thank you for your words and emotions and for the opportunity to donate to make a change so someday, another aunt will not have to feel these emotions.

    zchamu January 7, 2009 at 10:20 am

    You know I cry at Best Buy commercials now, right? You know I’m a blubbering mess now, right?

    Hugs. I can’t even begin to imagine.

    Meagan Francis January 7, 2009 at 10:38 am

    Thank you for the reminder. It is so easy to get caught up in day to day life and miss the ticking of the clock.

    I was just thinking yesterday that I need to get my 3-year-old son’s adorable little voice on video so I’ll never forget it. Had I not read this today I might have “put it off” for another 6 months. Now I’ll make sure to…and give him a few extra hugs while I’m at it. So thanks.

    Aimee Greeblemonkey January 7, 2009 at 10:39 am

    I am so so sorry.

    starrlife January 7, 2009 at 10:46 am

    I lurk but since you get so many comments I usually just read and go but today, today- it was so true and beautiful I just had to say it! I’m so sorry for your families troubles with Tanner. You captured the dialectic of time with our children perfectly.

    Colleen - Mommy Always Wins January 7, 2009 at 10:47 am

    I’ve stopped nagging my 4yo to not pick his nose and just hugged him instead. Beautifully written…

    Rachel January 7, 2009 at 11:05 am

    Oh my. I am so sorry for your family’s inevitable loss.
    We’ve had some of those ourselves and they are, in a way, a blessing. Because you take stock, treasure the time and are so much more in touch with yourself and the family.

    You capture it beautifully in your words.

    and running for the hope. That’s it perfectly.

    Jenn @ January 7, 2009 at 11:10 am

    I read this and loved on my boys today. Thanks for the reminder.

    Laurel January 7, 2009 at 11:13 am

    What your family experiences is unthinkable and unfair. I can’t go back in time to the toddler years but now as my two approach the adult years I am grateful and appreciative to enjoy and embrace each day they are still here still needing me and loving their presence. thanks for the beautiful words

    Schmutzie January 7, 2009 at 11:13 am

    Rarely does this happen, but I am crying so hard right now. Your words have moved me. They have done what language used well usually only hopes to do: they have ticked out layers and layers beneath the surface warp and weft, they have drawn my heart and mind out of my flesh.

    I cannot imagine watching that ticking down of time while watching a loved one slip away.

    Mom101 January 7, 2009 at 11:14 am

    I say I love you to my kids a million times a day because I never want to regret not having said it more.

    Such a beautiful post, C. My heart is yours, as always.

    BaltimoreGal January 7, 2009 at 11:26 am

    My cousin died, suddenly, at age 11. I was 13. There were no words for it then, and there still are no words for what it was like. I don’t know how my aunt, uncle and cousins got through it. Is it better to lose a child quickly or slowly? NO. It doesn’t matter. Like I mentioned elsewhere, I knew a kid in college who had MD, I understand how devastating it is to the person. My heart is with you all.

    Susan (5 Minutes For Mom) January 7, 2009 at 12:06 pm

    wow. so powerful. i love what you said here:
    “Hug your children today; hug them, and let time stop, and then, when it starts again? Thank the heavens for it.”

    Thank you!

    The Stiletto Mom January 7, 2009 at 12:17 pm

    The posts about your nephew always make me want to hug my children. Bless your sisters heart, I cannot imagine going through something like that.

    Domestic Extraordinaire January 7, 2009 at 1:03 pm

    Many hugs to you and your family. Thank you for reminding me how lucky we are to have all these precious moments with our children. Thankfully one of them is home from school today so i can go in and give her a big squeeze and kiss her forehead.

    thank you again.

    LAVANDULA January 7, 2009 at 1:09 pm

    catherine i’m so so sorry for what your family is going through.and i will give my children all hugs today.thanks for reminding us of whats important.

    Lindsay Landis January 7, 2009 at 1:51 pm

    Beautifully written. Thank you for the reminder.

    Ellyn January 7, 2009 at 2:19 pm

    I am new here. Not sure I have commented yet.
    Just had to say thanks for the reminder. It’s easy to forget in the hussle bussle of life that these moments are fleeting.
    Your family is in my prayers.

    Her Bad Mother January 7, 2009 at 2:20 pm

    Thank you, all, so much. My sister is reading these, btw, and the compassion and understanding are warming her heart.

    Issas Crazy World January 7, 2009 at 2:34 pm

    What a beautiful post Catherine. Sometimes I think this is the only comment I make over here, but it’s always true.

    There are no guarantees in life. This I know to be true. But you can’t live each moment like it’s the last, because then the small moments that are so special, don’t have as much meaning. Plus the little dictators need structure and rules and consequences. I just try and tell mine many times every day that I love them. That’s all I can hope for is that they know that.

    I hope your sister has a great run.

    Sarcastica January 7, 2009 at 3:36 pm

    This post was so beautifully written, I don’t even think I can come up with a good enough response for it.

    My heart aches for your family and what you’re going through. I hope you sister has a great run.

    I’m thinking of you all.


    Judith Shakespeare January 7, 2009 at 3:55 pm

    I love those moments when I’m holding them close, my nose pressed against their heads… Thank you for reminding me of how much so.

    My thoughts are with you and your family.

    Ginger January 7, 2009 at 4:08 pm

    Thanks for the reminder. I’m a relatively new mother in that we adopted an older child. I often think of those things I won’t experience, first words, first steps and I mourn them. But I am thankful for those first that I did experience and look forward to others. I hope I always remember not to let life get in the way.

    Amanda January 7, 2009 at 5:22 pm

    I hug the moments so close sometimes I find the next several minutes pressing down upon me with a ferocity that startles me. I accept that I won’t treasure each moment as it happens, rather I’ll embrace the swell of many moments. This post, and your family’s courageous Tanner, give me pause. I’ll use it wisely. Thank you and bless you.

    Dori January 7, 2009 at 5:34 pm

    Wow. Thank you.

    livinginagirlsworld January 7, 2009 at 7:15 pm

    Thank you for the reminder. I try my hardest to live mindfully.

    Kim January 7, 2009 at 7:38 pm

    Absolutely beautifully written. As a Mother who has lost a child, it hits very close to home. Mine was a sudden loss — I think they are both equally as painful.
    May we all be grateful for the babes that we have in the time we have them.
    Much love to your family.

    sandwiched January 7, 2009 at 10:18 pm

    I am a better mother for hving read this tonight.

    Thank you…

    Mommato2 January 7, 2009 at 10:18 pm

    Sitting here with tears rolling down my cheeks. Everything you said is so very true….we get caught up in the “routine” … do the laundry, clean up, check the list. Thanks for the reminder to STOP and enjoy every single second with our darlings. We are so very blessed. Huge hugs to your sister. She walks the road which we all fear.

    Parent Club January 8, 2009 at 11:10 am

    Thank You!

    April January 8, 2009 at 9:38 pm

    i think about the shadow often. probably more so than is healthy. how sad is it that life is so fleeting.

    best wishes to your family. always.

    Stephanie January 9, 2009 at 4:03 pm

    You should be published. Your writing touches the very meaning of being human. You humble me and the blessings I take for granted…daily. Thank you for such an eloquint blog. Tanner will receive prayers from Dallas.
    Hoping it’s a Happy New Year,

    moosh in indy. January 9, 2009 at 4:52 pm

    I love my kid.
    If she ever went anywhere but here I’d be lost. She is part of my heart on the outside of my body.
    Tanner’s getting prayers from Indy too.

    WhyMommy January 9, 2009 at 5:09 pm

    All true, Catherine, very true. In many ways, I live and mark the days obsessively … not because my children’s future is short, but because of mine own. It does help me remember to cherish every day … but it doesn’t help me relax.

    Relax, stop, enjoy … these are all important pieces, and, as always, you say it so well.

    lorrielink January 11, 2009 at 1:34 am

    so painful.
    im glad you wrote it, i dont know what to say, i just wanted to say..something. i just cant comprehend what this must be like for you. and im glad i cant. and scared. and i need to find my heart again and i thank you for pointing that out.

    Adie January 12, 2009 at 11:02 am

    Until maybe a year ago, I had never heard of Duchenne’s, but then a family from my hometown had a child diagnosed with it. His mother works with my good friend, my aunt and my cousin, so I see her darling son at many birthday parties throughout the year. My heart breaks for the fear I know they face, but they seem to do it rather bravely. In fact, they are even expecting another child, praying he doesn’t face the same illness Sam does, but going forward none the less.
    I am going to forward this to all of them.

    Roberta January 13, 2009 at 3:43 pm

    I just found you, and the first two posts I have read (this and thinking you are done having children) hit so close to home for me. I come from a family that has had more than its share of loss – 2 siblings when I was a child, and a 3 year old nephew as an adult. Your writing is so evocative of the raw grief, the shadow that follows you and unexpectedly darkens the sweetest of times. Thank you.

    The Preschool Teacher January 18, 2009 at 12:40 am

    I found your blog thru Motherhood unCensored. I’d like for my daughter to be able to send him some letters and little things. Is there an address I can send these to?

    Her Bad Mother January 18, 2009 at 10:39 am

    Preschool Teacher – how lovely. e-mail me at herbadmother at gmail dot com.

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