soaking

Every parent of a new baby has heard countless times from well-meaning strangers, “Soak it all in. It goes so fast!” Jodi and I are no exception. So often when I am out with Little Sister, strangers will admire her and will encourage me to soak in every last second of her babyhood. They are quick to remind me how quickly this time passes.

Of course, I know how quickly it passes, perhaps all too well. I know how in the blink of an eye, days and months and years slip by, and I know what it means to have the most finite stretch of hours to spend with one’s child.

I spare the well-meaning admirers my story and instead nod, with a sad, knowing smile, and reply, “Yes, I know.”

I know just how to soak it in. I know just how quickly time passes.

Lately, I have found myself holding onto Little Sister while she sleeps because she isn’t enjoying sleeping anywhere else. I’m warned by others to put her down, that she’ll never learn to sleep on her own, and I just can’t seem to do it. What if her life passes just as quickly? What if hers is a bright, brief flame like her brother’s? I know it is not healthy to live like this. I know that I have to, as Jodi puts it, parent for the long term, and for the most part, I do. It’s what we did with Caemon, even during his sickest times. But the soaking it in becomes addictive. The knowing how quickly time can pass becomes obsessive. I am trying to commit every breath to memory all while trying to cling to the moments I had with my son. It’s a fools errand in some ways, but it is also what I must do.

The funny thing is, while I do have this need to bask in these moments with my baby, it does all feel less urgent this time around. When Caemon was a baby, I was terrified of the passage of time. I dreaded his first birthday. It was all speeding by in a flash, and his whole life, I felt I was running out of time with him. My heart somehow knew I was. But for Little Sister, I don’t have that same feeling of dread. I am shocked that she is nearly five months old, but I’m not fearful. Like most parents of infants, I live almost exclusively in the now, but when I think ahead, I’m excited. I can’t wait to hear her talk. I look forward to knowing what she is thinking about. I’m eager to know her quirks and what will make her laugh uncontrollably, what will pique her curiosity. Perhaps this is a gift her brother left me. I know that there is so much good to look forward to, that there are so many moments to take in. Maybe part of me does trust that she will be here.

I suppose that has been what has kept me from writing. I have been taking in all of these delicious baby moments while I can, and I’m remembering Caemon as I do. My grief isn’t always front and center. It can’t be when I’ve got diapers to change and crying to soothe. But it’s there. It’s there, and the stories to share and the thoughts to write about flit by most days, unrecorded. Most days I’m not able to sit down and quiet my mind long enough to process my grief as I once did. For some, I imagine this looks like I have moved on, and certainly the part of me that is actively mothering again has had to in many ways. But the grieving mother is still here. I’m still shattered. I still have a gaping Caemon-shaped hole in my center.

But that Caemon-shaped hole has taught me how to love his sister so fully, to understand the true art of relishing the twinkling smile of my baby when she awakes in the morning, the sweet smell of her breath as she places wide-open-mouthed kisses on my cheek, the feeling–oh, the feeling–of my child’s sweet head resting on my chest. I don’t regret one moment I spend taking my time to know every inch and every breath of my daughter, just as I will never regret the moments I spent basking in my son’s warm laughter or his tender hugs.

Yes, I will take it all in. Yes, I know too well. It all goes far too fast.

 

 

 

 

The Caemon Marston-Simmons Hero Fund

HeroFunds_Facebook_Ad_Caemon

Today is Giving Tuesday, a day amidst all of the holiday bustle when people worldwide find ways to give of themselves. So today, we would like to share with you a way that we have been honoring Caemon, a way we can all give in Caemon’s memory.

Just a few months after Caemon died in 2013, I got in touch with a representative from St. Baldrick’s, an organization whose sole purpose is to fund pediatric cancer research, and I spoke with them about ways in which we could honor our son, one of which was a Hero Fund that would be directed to JMML research. In June of that year, Jodi shaved her head at our first St. Baldrick’s fundraiser, organized by Caemon’s uncle. A year later, we did it again, and this time one of Caemon’s oncologists joined us. With that fundraiser, we finally had enough to start our fund.

Today, we would like to unveil to you the Caemon Marston-Simmons Hero Fund. Caemon’s fund will provide grants specifically for JMML researchers as they continue to try to understand this disease. It is yet another way for Caemon to continue to make a difference, another way for him to live on.

But why should you give to St. Baldrick’s on Giving Tuesday? For us, this is personal in so many ways. You see, that same oncologist who shaved his head at our event last summer is also making some truly groundbreaking discoveries using Caemon’s own cells. You can read an article about the important work he is doing here: Rare Childhood Leukemia Reveals Surprising Genetic Secrets (note that the boy mentioned in the end of the article is, in fact, Caemon). His research is funded in large part by St. Baldrick’s grants, and his research is inspired in so many ways by our son. St. Baldrick’s continues to seek out the best researchers in pediatric oncology to ensure they have at least some of the funding they need to understand pediatric cancers.

We want to see an end to JMML–to all childhood cancers. We want these kids to have a greater chance at survival, and we know that supporting St. Baldrick’s is one way we can help ensure that happens. Please join us today in giving to St. Baldricks. Help us grow Caemon’s Hero Fund, and help us support these researchers who want to put an end to this disease.

Thank you!

The Marston-Simmons Family

 

nothing compares to this

From Jodi

Last week something pretty incredible happened, or at least I think so. I was outside doing chores, and after finishing, I entered the kitchen from the back door. I stopped and observed from the doorway. Our three month old daughter sat happily in her bouncy seat on the floor near the pantry watching Timaree bake. The room was filled with a comforting aroma, banana bread I think, baking in the oven. Music played from the iPad on the counter, “Friday, I’m in Love” by the Cure, one of her favorite bands since adolescence.

And she was singing.

My heart swelled. My breath caught.

Timaree hasn’t sang since our son died over two and a half years ago. Not in the car, not in the shower, not in church. Not at concerts. Not a note.

Grief manifests itself in so many ways, and one of them, for Timaree anyway, was the loss of her singing voice. It makes sense as music is pure emotion; it is joy and sorrow; pain and release. To sing is to feel, and in her case, to feel pain (more than she already feels).

I stood suspended in a moment I didn’t see coming, but I immediately recognized it as a significant shift. You see, Timaree and I had our concerns about certain things during her pregnancy: would we overreact to every cold and be suspicious of every bruise? Would our baby learn how to smile and laugh if we rarely smile or laugh? Would we be able to love her as much as we love our son?

Of course, some of these questions seem ridiculous now because of course we are crazily, ridiculously in love with our daughter. She makes us smile and laugh all the time—not the strained obligatory smiles we memorized for social acceptance—and our smiles are now being rewarded with big, lopsided toothless grins of her very own. Each of these smiles expands us, heals us, and brings us back to life.

And, as it seems, the music of our baby’s newly discovered laughter has returned the gift of music and singing to her mommy. Thank you baby girl. Now I get to see both of you smiling and singing, cooing and laughing, and, I can say with some certainty that absolutely nothing compares to this.

the elephant in the room

From Jodi:

No matter what space I occupy, there’s an elephant, with all its cliché trappings, and I have to work pretty hard to balance acknowledging it and working around it. The elephant, of course, is that I had a child who died of cancer, and I fiercely grieve him, even two and a half years later, and yes, even in the wake of a beautiful new baby daughter. Shouldn’t her arrival make that pesky elephant disappear? Or shouldn’t it at least make fewer appearances? Once might think; then again, one would be wrong.

A week after we brought the baby home, Timaree’s whole clan came to welcome the baby to the family. There was a seven-year-old, a five-year-old, and a two-year-old all crowded around Little Sister, completely enraptured by her. Grown-ups busied themselves preparing food and waiting (not so patiently) for their turn to hold the baby, meanwhile catching up on months of backlogged news. So and so is moving! Grandpa got a new job! Another pregnancy! It was familial chaos, beautiful, brilliant, and achingly incomplete. There should have been four children clamoring around the new baby. Timaree and I looked at each other, and we both saw it on the other’s face. Now, how can that big elephant fit in a space so occupied with family and love?

It always finds a way.

Just before our daughter was born, we ran into an old friend from our moms group whom we haven’t seen since Caemon’s memorial service, and she was telling us all about her daughter and how she’s starting first grade, and there that elephant was, reminding me that my son would have been in first grade had he lived.

Sometimes others see the elephant, and sometimes not. I believe it is the burden of the bereaved parent to feel the child’s absence at the molecular level in a way others cannot. I do not resent anyone for not seeing how loaded holidays and celebrations and milestones are for me. When a few special people acknowledged Timaree and I on Mother’s Day, even though Caemon was gone and Little Sis wasn’t here yet, they were acknowledging that elephant so beautifully, and for that, I love them more fiercely than they may know.

Today is August 21st, and the elephant is rampaging. Three years ago, Caemon was diagnosed with leukemia. D Day (or, diagnosis day) is a rough day for cancer parents. We hate it, dread its arrival, and it clouds everything, even dampening the bliss of new baby. Of course I am over the moon at her arrival. She’s absolutely amazing, but Timaree and I don’t get a day off from the elephant because when this anniversary passes, we will anticipate our son’s birthday in September.

Now I know there are some judgmental folks out there that think Timaree and I should be done with all this grieving business; some who have suggested we no longer write about our grief, that we should instead focus on “joyful things.” Now that there are actually joyful things to think about, I imagine we will, but to deny the elephant that walks alongside us on this journey is to ignore our son, our loss, and allow him to vanish into the fog. No way. That’s not happening. As long as I live, Caemon’s legacy and memory will remain.

We will write about Caemon and our lives without him, how we cope with our pain, the lessons that come to us over time, and we will continue to do this work as long as we need to because there is no time limit on grief. It has no expiration date, and the path toward healing is long and complicated. We will continue to talk about him in everyday conversation because our experiences as his mothers informs our world view on so many levels. We will continue to acknowledge that elephant in the room because we are learning that it helps others cope with their grief. Sometimes just a silent recognition is enough, and sometimes we just need to say out loud “I had a son who passed away from leukemia and I miss him oh-so-much.”

Like so many things in life, if you fear the elephant, its presence is dark, scary, and unwelcome. But if you turn around and look at it, stroke its ears, tell it “I see you,” life becomes a lot more authentic and manageable. Today is Caemon’s D day. How will I face it? Today I write. On his birthday, we will launch the C is for Crocodile Little Free Children’s Library. This is how not to get trampled by the elephant in the room.

embrace

This morning, as restless birds announced the first traces of dawn,

My newborn daughter also stirred, yearning for the comfort of warm arms.

I laid her on my chest, embraced her as I drifted in and out of sleep.

And behind my eyelids, her brother appeared,

His arms outstretched to hug me, his hair golden and glowing,

His smile illuminating him: pure love, pure light.

He sat in my lap,

Wrapped his whole little body around me,

Told me he loved me.

And the boy-shaped hole in my heart felt, for just a moment, almost full again.

I awoke to find myself hugging his sister, tears streaking my face,

Overcome with love for my children,

My dream boy, my dreamy girl.

Our family photo shoot, just one week prior to his diagnosis.

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Photos courtesy of In Her Image Photography.

introducing…

A week ago, IMG_0373we welcomed our sweet baby daughter into the world–a little sister for Caemon, a new lease on motherhood for Jodi and I. We are overjoyed to introduce her to our community here.

We are all doing very well. Our daughter decided to show us right away that she is her very own person. Unlike her brother, who took a nice, long 36-hours of labor to arrive, she barreled into the world in a mere three and a half hours. And while Caemon was a whopping 9 lbs 11 ounces, she was a healthy 7 lbs 15 ounces. And most importantly, she is incredibly healthy. Having such a different start with her was good for us, for while she looks very much like Caemon, especially as a newborn, she is her very own person and shows us this in so many ways. 

Our days are mostly filled with jIMG_0403oy and newborn fatigue right now. It’s such a relief having a child in my arms again, having someone to care for. I won’t lie: it’s exhausting caring for a newborn, and with that exhaustion and all of the changes comes occasionally more pronounced grief. It’s hard not to wonder what Caemon would think of this little girl. It’s hard not to miss him in all new ways. That will take some time to work out, I suppose, and I imagine I will have plenty to say about these new transitions here.

But all those worries I had about loving her enough or as much as Caemon? They have been washed away in these first seven days. I am so in love with this little person–just as in love as I was with Caemon. I feel her healing my heart, showing me again just how beautiful it is to be someone’s mother.

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One last note: On this blog, Caemon’s sister will be known as Little Sister. We would like to give her a small amount of privacy (as much as one can in this age). She didn’t ask to be in the spotlight, so we want to respect that. If you know us in person, we respectfully request that you keep her name private as well.

welcome back

A few months ago, I started attending a prenatal yoga class one evening a week. It’s a different kind of class in that we share tea and conversation following our yoga practice, and much of the conversation, as one might imagine, revolves around pregnancy, child-rearing, and general mom concerns. It’s a lovely time for these women to connect with others who are facing similar experiences, whether first-time motherhood or negotiating the waters of second/third-time parenting.

In the first class I attended, I did share that I had a child who died. It seemed appropriate because we were asked to share whether we had other children, but I didn’t say more about it. At the next class, over twice as many women attended, and I chose not to share my story. I didn’t pretend to be a first-time mom, but I didn’t bring up my son dying of leukemia either. So when it came time for our tea and conversation following the class, and a woman was struggling with getting her nearly-three-year-old son to sleep, I wasn’t sure what to do. I had advice, experiences to share, and I wasn’t sure whether to share them as though I had a living child or to stay quiet lest I bring up my son who died and inadvertently shift the focus to myself. I sat and nodded in recognition of her plight, and eventually, our teacher noticed and said, “Timaree, it looks like you know something about this.” It was an invitation. I shared from the experience I had of a child who preferred not to sleep, all while staying focused on the mom, avoiding my own story, pretending if for a few minutes to be one of these second-time moms, even though it felt a bit foreign.

At the end of class, the teacher spoke with me, thanked me for joining in the conversation and sharing my bits of wisdom. I told her that it had been a long time since I had sat in a group of moms talking as a mom, that it was nice to share. She placed her hand on my shoulder, looked warmly into my eyes, and said, “Welcome back.”

Every time I think of that moment, I tear up. Since Caemon died, Jodi and I have wanted to “get back” to parenting. We were just getting started when he got sick, just finding our groove. We loved being the moms of a curious little boy; it was such a singular joy, our primary focus. When he died, not only did we lose our beloved son, but we also lost this enormous piece of our identities. People reassured us we were still mothers, and in our hearts, we felt we were, but we didn’t live the lives of mothers. We haven’t for two years and five months. There have been no bedtimes to negotiate, no meals picked over by four- or five-year-old hands, no loads of small clothes to wash or toys to put away, no scraped elbows to kiss or hurt feelings to hug away. Mothering Caemon has turned to remembering, longing, grieving.

Here we are, though, less than a month away from meeting Caemon’s little sister, and all signs point to us getting back to parenting. But what does that mean for us? We won’t be starting again where left off—and I think for a long time that’s what “getting back” to it meant for us: reading the books we had just discovered with Caemon, repeating our favorite family inside jokes, making muffins on a lazy Sunday while our son tried to lick up all the batter; it meant getting back to mothering the boy we knew so well. It has taken months for me to grasp that getting back to it is really starting over—starting with a whole new little person, a whole new perspective of parenting, and in that, there is both joy and grief, anticipation of the new and longing for the familiar—always this duality of emotions.

As this pregnancy has progressed, I have met other expectant parents—some of them first time moms, some experienced parents with small children to consider—and I simultaneously identify with both sets and none of them at all. I have all the “luxuries” of being pregnant and preparing for a newborn without parenting another child. My wife and I can spend quality adult time together, I can nap whenever I like, I can be as lazy or as productive as I like because I don’t have a living child to consider. But because I am not a first-time parent, I have the wisdom of experience, the serenity of knowing I don’t have to worry about swings and bottle warmers and having the perfect nursery, of knowing that birth doesn’t have to be scary, and more importantly, that we can do this.

Then there is the other side of it all. We have hand-me-downs from big brother–toys, clothes, his precious books—without the big brother attached. There will be no wondering where Caemon should spend the night while we are at the hospital, no first meeting of brother and sister, no little boy jealous of the time his moms spend with the new baby, no watching two siblings loving each other as only siblings do. Coupled with that I have so many of the fears of a second-time mom: the guilt of giving my thoughts and love over to another child, of feeling like I’m somehow neglecting my first child for the other—of forgetting the little details about my son: how he smelled, how his cheek felt under my lips when I kissed him good night, how his laughter rang throughout our home. I worry I won’t love my daughter enough, that she won’t know the best of me, that she’ll always be trying to access that part of me who died with Caemon.

I suppose some of my worries aren’t unlike those of second-time parents at all; I just happen to parent a first child who no longer walks this earth. He was my first love as a mom, and he always will be. Certainly I will love his little sister. Certainly I will continue to love him.

I am not getting back to the parenting I once knew, but I am rejoining the world of mothers of living children. I am growing a little girl in my belly who is likely to split my heart wide open again, who will remind me of her brother in some ways and in most ways will be her very own being. I am soon to meet this soul who will indeed welcome me back to the most treasured role I have ever held. I have her brother to thank for showing me the world through a mother’s heart; I have her to thank for bringing me home again.