Home > Family, FTIAT, Guest blogger, Love, Parenting > FTIAT: Ode to Jay

FTIAT: Ode to Jay

Sheila (Mary Tyler Mom) has changed my life with her words. You have heard about some of these changes in my many reflections on Donna’s Cancer Story, her blog series about her daughter’s battle with cancer. You will hear about the other changes in time.

While I first knew Sheila thanks to her daughter, I have come to see her as much more than “Donna’s mom.” She is a mom, an advocate for social change and for hope, and an exceedingly rare writer whose powerful words unify intellect and heart. She makes me laugh when I least expect it. In the face of her words, I have no room left for my compulsive overthinking; as long as I am reading them, I am immersed in the world as seen through her eyes. This is a gift for which I am exceedingly thankful.

Thinking back to when I first read Sheila’s words, I am floored to think how little I then understood how much knowing her would change me. It is an honor to know Sheila, to have hugged her, and now, to feature her here today.

Ode to Jay

I remember it clearly. It was a cloudy November day. I was playing with my eleven month old baby boy. I turned my head and he was smiling at me, so full of joy and love. I loved him, too, but in that moment, it was like meeting him for the first time, as if, almost, I had just birthed him.

My son was born into a complicated family. His older sister, Donna, three and a half years older, was in treatment for an aggressive brain tumor. She was prevented from visiting the hospital to see him and for his first week of life had to be in a different room, as she had RSV, a cold strain that can be fatal to infants. She died when Jay was just shy of ten months. He was a brother without a sister, just as I was a mother without a daughter. None of that was right.

Much of Jay’s first year is fuzzy to me, a swirl of relapses, surgeries, chemotherapies, fear, dread, and sadness, none of it much related to him. His infancy squeezed in between hospice visits and hospitalizations. I nursed him, thank God, because I honestly believe that if I hadn’t, our bond would have been tenuous, another casualty of cancer.

For Jay I am thankful. Every day I thank my lucky stars that I have him to care for, to call me Mom, to fuss over. My grief after Donna’s death might very possibly have consumed me, had I not had Jay to feed and bathe and diaper. And love.

Every day, my husband and I were the best possible parents we could be for our daughter. We had our A game on every damn day, knowing that her days were numbered. When we were tired, we were there. When we were traumatized, we were there. When we were sick with worry, we were there. Every day. Our son deserved no less.

Jay deserves no less. These were the words that came to me on that November day, thick with grief. Jay deserved no less of a mother than his sister had. Jay deserved a mother who was engaged, loving, and present. I would do my best to be for him what I was for Donna.

In the end, not that there is an end to grief, I credit Jay with saving me. I talk a lot about choosing hope and its importance in my life. Choosing hope, something I try to do every day, is a hell of a lot easier when there is a little one to guide you to it. Donna taught me about hope, but Jay makes it possible. For Jay I am thankful.

There are distinct memories in those first months after Donna’s death. One is especially potent. I was giving Jay a bath, him playing and gurgling away. I was overcome with sadness and tears overtook me – I would never bathe my girl again, never dry her, moisturize her, dress her, comb her non-existent hair. That reality kicked me in the teeth in the middle of Jay’s bath. It hurt like hell. Tears came. Jay giggled. Then laughed out loud. That was his just one year old response to my tears. Laughter.

How can you not laugh when a baby is laughing in your presence, laughing at you? You can’t. You just can’t. At least I can’t. I laughed through my tears. Joy and sorrow, uncertain which was which, realizing it really doesn’t make a difference, does it?

For the past one thousand and ninety-nine days I have awoken surrounded by that same joy and sorrow. Jay keeps me balanced. The responsibility of being his Mom keeps me on even footing, for the most part, excepting the occasional “pajama day” where it is understood that Mama isn’t feeling well and needs some time on the sofa with a glass of soda and some Real Housewives of It Doesn’t Even Matter. Jay keeps me present and in the present. The folding of his socks and rinsing of his hair and flipping of his pancakes and reading of his books is what keeps me here.

But it’s important not to lay all that on a one year old, or two year old or three year old. I try hard not to do that. What Jay is – my hope and light — that is for me, my knowledge, my personal foundation. No child should bear the responsibility of being the known buffer between me being here or there, between his mother being present or dropping into the abyss of grief.

For Jay I am thankful. Being his Mama brings a joy and lightness to my life that I am keenly aware of and grateful for. Sometimes I worry that I do not grieve enough, that joy and pleasure are too much a part of my day-to-day life, especially for a grieving mom.

When that worry sets in, it is short lived. As with Donna, Jay teaches me to appreciate the moment, as some of us have fewer of those than others. Those moments with Jay – the frustrating, wonder-full, messy, nagging, worried, loving, silly, sticky, noisy moments keep me squarely in hope’s corner. For Jay I am thankful.

last : I will not sit idly by… | Past, present and imperfection : next

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  1. Running from Hell with El
    October 26, 2012 at 5:42 am

    This is beautiful in all ways. The writing is clear, unadorned and elegant. Through these words, you put us right there with you, and the you I see within these words before me is a human so very much worthy of celebrating and truly hearing. I hear you Sheila, and I’m thankful for your message. xoxo

  2. October 26, 2012 at 5:48 am

    Sheila. I cannot. Cannot imagine it. We only have one child, but to lose one. I cannot imagine the hole in your heart, but I’m so glad that Jay is there to fill it. May his presence in your life make you feel whole. And would all do well to remember to live in the moment a little more. Thank you for sharing your words.

  3. Lisa Kilgore
    October 26, 2012 at 5:52 am

    wow what a powerful and life affirming testimony I have followed your page but this is the first blog I could read without crying all the way through. Your talent and your strength amaze and humble me

  4. October 26, 2012 at 6:07 am

    Since learning about you and Donna and your wonderful family last year, I have thought about this more than I probably ought to. I’ve wondered how you do it. I wondered how you could be so funny and cheerful so often, knowing what you’ve lost.
    I know what would happen to me in your situation, and it wouldn’t be pretty, but I only have one biological child.

    I think Chris and I had a discussion about it after he read Donna’s story, and the only thing we could think of was that Jay had saved you. We knew that if you didn’t have that boy to take care of and love, that we probably wouldn’t know you at all.
    There wouldn’t be a Mary Tyler Mom or a blog or any of that, because without Jay, as you’ve told us here, you wouldn’t have much to wake up for each day.

    So, even after you told us that night in traffic that your FTIAT post was about baby Jay, and knowing in my heart how much he truly means to you, this post still hit me hard.
    Seeing in your words what I already suspected, that without him, you might not even be here to tell this story to the world. Or to tell any story, for that matter. The world may have missed out learning about Donna, if not for baby Jay.

    You never cease to amaze me, Sheila. I am so honored and blessed to call you a friend. And I suppose I am also grateful for Jay, because without him, our friendship probably wouldn’t exist. Without him, my life would be missing some light that only you and your sweet girl could have brought to it. Thank you for sharing your light with the rest of us. So much love to you and your boys, Sheila. XoXoX
    (I hope this makes sense, because I feel like I rambled through it.)

  5. October 26, 2012 at 7:15 am

    Lovely. And that’s what Love is, isn’t it? – BEING THERE.

  6. October 26, 2012 at 9:04 am

    I am humbled reading Sheila’s account of hope and loss. It really puts things in perspective. Causes me to think a little clearer and love a bit louder.

  7. Dee Edwards
    October 26, 2012 at 10:22 am

    You were a good mama for Donna, and you still are. You are a good mama for Jay this moment and all the rest to come. Blessings to you all as you walk the walk, with a spring in your step, a smile on your face and a hole in your heart. The balancing of life and death is unfathomable.

  8. October 26, 2012 at 10:47 am

    beautiful ❤

  9. October 26, 2012 at 11:38 am

    Though I don’t have children, I will very much vouch for the demerits of an empty house. I’m glad you had Jay as an anchor – and glad Jay has such a loving and resilient mother. Very well done!

  10. October 26, 2012 at 12:02 pm

    Sheila, you are amazing. Love.

  11. Angelina Libby
    October 26, 2012 at 1:31 pm

    Clicking on Donna’s Story was one of the best clicks I’ve ever made. You are blessed to have Jay and he is blessed to have you. Our families, the people we love, save us every day and we save them. Love, Hope, some days they are all that hold us up while the storms of life rage around us. You remind me of that daily in the very best ways. I tell you often, but you truly do inspire me. Thank you.

  12. Laurie Been
    October 26, 2012 at 2:37 pm

    Absolutely beautiful ❤

  13. October 26, 2012 at 5:30 pm

    Thank you all for the very kind reception and good will shown towards my family. Grateful for the opportunity to write for this series and grateful, too, for the writing itself, as it has been another anchor for me in grief.

  14. Nancy OConnor
    October 26, 2012 at 6:39 pm

    Sheila, you are crazy fucking awesome.

  15. October 26, 2012 at 6:57 pm

    You continue to move me with your blogs, god bless you and yours and I am kind of not of the religious type. Love to you mtm and mtd and mts!

  16. October 26, 2012 at 10:07 pm

    Thank you both for this post. Deborah, thank you so much for introducing me to Sheila.

    Sheila, thank you for a life affirming post. A post that recognises that we don’t ‘get over grief’, instead we find ‘ways to live with it’. And a post which recognises the magic of your relationship with Jay. Touched, and in tears. Thank you again.

  17. cheryl shortt
    October 26, 2012 at 10:42 pm

    beautiful story

  18. October 27, 2012 at 8:53 am

    Each time I feel the need to rage, I will think of this “the frustrating, wonder-full, messy, nagging, worried, loving, silly, sticky, noisy moments keep me squarely in hope’s corner.”

    Thank you for that, thank you for your eloquent and simple statement of love and grief, I read it through tears.

    Thank you Deb for this, as always for these moments I am grateful.

  19. Regina
    November 4, 2012 at 5:58 am

    All of Sheila’s writings have brought me to a place of higher understanding and hope. I laugh, I cry and I am changed a little. However, this particular *one* puts to words that which I have felt for nearly 5 years. We lost a little boy. He lived just 1 hour and 47 minutes and he left me and my family forever changed. In the days and weeks following his death I wanted to die, to succumb to the horrifically painful grief. And then I would look into the eyes of my Dear living Son~ 2 years old, healthy, happy and loving me…..he loved me right back from the brink. If I did not have him to bathe, to diaper, to care for, to give love to…I honestly don’t think I would have made it. So to MTM~ thank you *AGAIN* for your beautiful words and for sharing your ‘complicated’ family with me.

  20. November 11, 2012 at 8:23 pm

    Love you, Sheila, as always. ♥

  1. October 26, 2012 at 5:39 am
  2. November 9, 2012 at 5:34 am
  3. October 1, 2014 at 8:40 pm

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