Category Archives: baby sister

this is halloween

Today is Halloween. It’s Halloween, and I have a three-year-old to dress up, a three-year-old with whom to share the wonders and strangeness of this day. It feels like a miracle.

2012-10-31-12-54-59.jpgSix years ago today, I also had a three-year-old with whom to celebrate Halloween. Caemon was dressing up as his favorite superhero: a nurse. He had scrubs the same shade of blue as his nurses, a pretty amazing counterfeit UCSF ID, a surgical mask, and a bald head to match all the nurses who cared for him.

But his mask, while conveniently thematic, was not necessarily part of the costume, and his bald head resulted from the chemo that dripped into his body to try to cure the most terrifying monster of all ravaging his little body. Still, my boy was ready for Halloween, and the fact that we were home for a rare few days from the hospital meant he got to enjoy the thrill of walking out into the world wearing the disguise of someone who was, in his eyes, invincible. Wearing his costume to have blood drawn meant wearing a surgical mask, which he needed to protect him from all the viruses fall has to offer, wasn’t so strange out in public. It also meant that the providers in the clinic we went to gave him more candy. But most importantly, it meant he felt like he was one of them and that he had some control over circumstances that so rarely seemed to be in his control.

I remember it rained that day, that we would get a call from our Nurse Practitioner at IMG_8183UCSF telling us we would need to come back that night, telling us to take him trick-or-treating first, telling us they would make it special for him when he arrived. I remember walking him in the rain to four houses in our neighborhood, the rain on my face hiding the tears that were flowing freely. As the neighbors handed him very special treats, I remember wanting so much just to have a normal Halloween for my boy, a normal childhood, a normal anything.

I remember driving that night over the Golden Gate Bridge, the rain and the lights of the city twinkling so magically and how sharply that contrasted the thick blanket of disappointment in the car as we returned to the hospital early with a very sick boy. I remember going through admitting at the hospital with my little nurse in tow, and as we walked the hall to the elevators to go up to the pediatric oncology floor, a nurse in the ER swooned when she spotted him and asked if he was ready to get to work that night. “Of course!” was his reply, as he began so earnestly to follow her. I remember arriving on his floor to find his room prepped by a favorite nurse with treats in the form of exciting medical supplies to find. And I also remember an hour-long attempt at getting him an IV from a beloved nurse in an Alice costume because in the morning he’d be getting his Broviac surgery—a central line—and he needed to be topped up on platelets.

I remember that Halloween more than any other. Trauma has a way of tattooing memories onto our minds, and while I have soft-filtered images of his first three Halloweens, that last one may as well have happened yesterday.

And it was his last. Caemon had four Halloweens. He was a polar bear, a skeleton, a kitty, and a nurse. That’s it. He carved pumpkins once. He trick-or-treated twice. He loved every bit of it, even as a sick little boy.

But here I am six years later. I am sitting in my car, dressed as a black cat, complete with drawn-on whiskers, because my three-year-old is at school, and I am to help with her Halloween parade. She is also a kitty, all in pink. She chose my costume so that I would be like her. The idea for her costume came from her love of the cat in the book Room on the Broom—a book of her brother’s, a gift from one of his beloved nurses. Even though he is not here, her big brother influences her. Our stories of him, the photos of him all inform her existence and my parenting. I treasure that, but sometimes I have to pause. Is my pain and grief somehow tainting how she celebrates these days? Am I wrong to let her images of her big brother color choices she makes?

As much as I have feared her living a life in Caemon’s shadow, I need not worry. This child shines in her own brilliant way, and she reminds me when I find myself lost in my grief this time of year that I have to keep celebrating. Though I was reluctant to do so, just as I have been every year since he died, she encouraged me to pull out the Halloween decorations. She reminded me that, yes, this is what we do. We display the big spiders and the cauldrons and candles and the purple lights. We visit the pumpkin patch and drink too-sweet freshly-pressed apple cider. We decorate pumpkins, first in stickers and paint, then with whichever design we opt to carve into them, and always at the last minute. We put on as many costumes as we can for the entire month of October. We eat the treats. We go to the parties. We celebrate.

And because of her brother, she gets to eat some candy despite my reluctance to give my kids sugar. Because of her brother, I go to her school and volunteer in costume even though I should be working. And because of her brother, I face this day with reverence, with poignancy, with an ache in my heart. But because of my daughter, I can finally see this holiday with joy again.

And isn’t that perfect? Halloween is a time when we celebrate the dark, when we look at the underworld and peek behind the veil to see what we don’t normally want to acknowledge. We see fear and horror and even death on parade. And to that we add the light–of sparkles and jack-o-lanterns, and, yes, little pink kitty cats. I can think of no better day to honor my two children, to see the intersection of the lost and the living, to embrace everything they are to me, to one another. And for the first time in so many years, I am grateful as can be to celebrate this day.

 

 

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the boy behind the glass

 

 

IMG_0017Recently, I was looking at photos on Caemon’s iPad, a gift our family gave him for his bone marrow transplant. When he received it, my budding photographer quickly found the camera function and began snapping pictures. He
photographed his feet, his hospital room, his bed, the ceiling, and now and then, he captured his gorgeous face. These images of his face, though, are usually somehow obscured. Some are blurry. Some capture only a small glimpse of him–a sleepy eye, a sly smile. And then there are these odd photos resulting from him tinkering with his camera settings, thermal images of sorts, which capture him in the midst of expressions so uniquely Caemon, moments when his lips were pursed in concentration or his grin seemed to broaden because he was in my arms. These are the pictures I want to see most. But instead of appearing true to life, they feature wild, Technicolor versions of Caemon. It’s him, but not quite. I can’t quite see my boy. IMG_0019

Three years and one month have passed since I last saw my son. Soon–in four months– Caemon will have been gone longer than he was alive, and as this reality looms, I find myself straining more and more to remember his voice, to feel his little arms around my neck, or to quickly pull his face into view

Naturally, I rely heavily on photographs and videos. Any time I find an image of him that I either haven’t seen or have scarcely seen, my breath catches. For a moment, I see a new expression on his face, an angle that may not have been captured before. I study the image, commit it to memory. It becomes one more piece of him that I can carry, one more inch of my son for me to know.IMG_0015

But I can’t quite do that with the iPad images. I have tried my hardest to edit them into normal colors or black and white or some form that is more recognizable, but to no avail. These are Andy Warhol’s version of Caemon, not the boy I birthed and held and kissed. They won’t quite let me access the nuances of those moments the photos were supposed to capture. This has plagued me for three years and one month, and any time I see those images, I strain to see him. 

I can’t help but notice that this is how so much of my memory of Caemon feels now. I can see his face, but I can never fully bring it into focus, as though I am perpetually looking at his image through foggy glass. Lately, I find that the photographs are all I can remember, and this is unsettling too. I can remember the days that were chronicled with pictures; the others are hazy, and while I am glad to remember them, I am also troubled by how much less real Caemon feels. So I challenge myself, and I challenge Jodi, and she challenges me to remember him without pictures. We recall moments. “Tell me about what you two would do when I left for work,” she will ask me, and I will piece together bits of memories of baking muffins or walking to the park until soon I am remembering a life with my son more fluently.

We do this more regularly now. “Do you remember what he looked like when he sat at the counter drinking his tea?” one of us will ask. “What about when he would make a stack of books and sit in your lap to read?” “Remind me of how he looked when we turned that cardboard box into an oven.” It’s a game we play, Jodi and I, the game of remembering our son as he was, the way only she and I knew him. Those are the memories subject to decay as our minds age, as time wields its relentless eraser. We tell these stories and invoke these images, remind one another of the tiniest details the best we can. We do it over and over in hopes that we will etch them permanently into our consciousness. But for all that work, there are still things we have both forgotten. I will try to remember a certain phrase he used, and it will be gone. I try to remember the lower register of his voice before leukemia, and it’s just beyond my reach.

He is always just beyond my reach.

I so desperately want to see him, to hear him, and oh, to smell him, but he is fading with time as he must. It would be too hard for us to keep living were we to remember him with the same detail as we did the day he died. Time must soften the edges of our boy in order to ease the pain, but isn’t this the rub? I don’t want the haziness of a soft-focused son; I want the sharp clarity of a boy still here.

Recently, Little Sister has started to notice photographs of children in our home. Naturally, among these are photos of her brother. She smiles at the images when she sees them. Just last week, she was expressing even more interest in the photos of her brother, so I carried her around looking and then stopped in our hall where our family pictures line the walls. “This is your brother Caemon,” I told her. She grinned widely, eagerly. She seemed so happy to see him, and I wept to think she wouldn’t know him, but I delighted in her joy all the same.

The next day, I wanted to show Jodi her reaction to her brother’s photos, so I took her to IMG_1099the hallway. I told Little Sister, “Let’s go look at your brother,” and her head quickly turned toward his image. Once again, she grinned broadly, cooing, giggling even. She reached her tiny baby hands toward the glass, wanting to touch him, and Jodi and I both welled with such a flurry of emotion: relief that she seems to love him even without knowing him on this plane, sadness that she doesn’t know him here and now. More than that, we keenly understood what it is to want so fiercely to touch that handsome face only for the glass, time, and the cruel, cruel reality that is Caemon’s mortality to keep him forever out of reach.

Still, there is something in her desire to reach out, something from which I can learn. Her joy doesn’t end when she cannot feel him. She continues to smile and coo and even squeal just because she can see him. Of course she continues to try, and the glass is amassing a wonderful collection of baby finger smudges as a result of this new ritual she enjoys, but she seems to revel in just being able to see him at all.  I’m trying to allow myself a similar joy, trying not to feel only a greater sense of yearning when my hand is stopped by the two-dimensional representations of a boy no longer here.

I am fortunate to even have these images of my son–vibrant, shining, alive. So long as the photos are here, I can remember that I did indeed have a son, that my daughter had a bigger brother. Time will undoubtedly continue to steal strands of his memory. He will grow more and more difficult to reach. But nothing can rob me of the way he burst my heart wide open. Nothing can erase the imprint that boy has made on me.J17J6

 

 

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.

 

 

 

 

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.