Do One Good Thing for Hudson’s Fifth Birthday

Five. In five days, Hudson should be turning five. This birthday feels bigger, more momentous somehow than birthdays past—unfathomable. It is our fourth without her—unfathomable. We’d be getting ready to send her to kindergarten next fall—unfathomable.

It occurred to me this morning that for the first time since she was born, her birthday falls on Thanksgiving weekend. She was born the Monday after Thanksgiving in 2008. When I left my office on the Wednesday before Thanksgiving, I did some wrapping up and packing up, because I just had a feeling that I might not be back. It was an odd hunch, because she was not due to arrive until December 10, and first babies are not necessarily famous for coming early. But my hunch was right, and I woke up early on the Sunday after Thanksgiving with regular contractions that increased over the course of the day. She was born at 7:19 the next morning.

And here we are. Five years later. Another Thanksgiving weekend. Another birthday. But no Hudson.

I wrote at this time last year that she felt farther away from me than ever. This year, she feels closer than she has in a long time. That is what grief does to you. What it does for you. I have felt the weight of my grief more acutely in the last few months than I have in a long time. On Friday night, I cried myself to sleep for the first time in as long as I can remember (and woke up the next morning with the accompanying intense ache behind my eyeballs that makes me wish I never had to open my eyes again). And because I feel closer to my grief, I feel closer to my girl. Such an strange ebb and flow.

But here we are at another birthday. Last year, we had to find some new One Good Things to do in honor of Hudson’s life now that we live in our old home again. We again took toys and treats to the animal shelter, and instead of taking toys and books to the children’s hospital here, we opted instead to give them to the Ronald McDonald House nearby. And we made our annual donation to the National Arboretum, where Hudson’s bench and a very tiny portion of her ashes remain (the only portion that is separated from the rest, which sit in a ceramic jar on my bedside table). We’ll do these same things again this year, to celebrate Hudson’s life in ways that we know honor the wonderful spirit that she was and the things that she loved and the people who cared for her in her last hours.  Thanksgiving weekend seems like an especially lovely time to do these things in her memory.

As we have in years past, we also invite you to do One Good Thing sometime this week or on December 1st. And please share with anyone else you know who might want to help us celebrate her life in this special way. And as in years past, if you are so inclined, we would love to hear from you about your One Good Thing, so feel free to leave a comment here about it.

I will end the way I always have: We can’t stop it from coming. We can’t bring Hudson back. But in the spirit of the lesson she taught us, we can continue to help her light shine in the world by finding the One Good Thing, and this week, that means doing One Good Thing. Thank you all so much.

The Things We’ve Handed Down

I recently read Liane Moriarty’s new book, The Husband’s Secret. One certainly could not have guessed from the title or description of this book that dead and maimed children would figure so prominently in it, so I dove into it unsuspectingly, only to find myself reading words that I could have written myself as the author describes one mother’s deep grief over her daughter’s death nearly thirty years before. Some of her descriptions were so apt that I found myself researching the author on the internet to see if she herself had lost a child (she hadn’t).

At one point this mother, whose daughter died at age seventeen, wonders aloud whether her daughter would have liked Tupperware parties. The passage continues, “She tried, and failed, as she always did, to imagine Janie as a forty-five-year-old woman.”

And I thought about the countless times in the last three-and-a-half years that I have tried to do this very same thing, tried to imagine what Hudson would look like, tried to imagine what she would be like, tried to imagine what she would be interested in. But even as I watch all of her age-group peers grow up in Facebook photos and videos, I find it impossible to imagine her face, her personality, her voice.

When I read that passage and thought about how impossible it is to imagine Hudson at almost five years old, I was suddenly jealous of this fictional grieving mother. Irrationally and in my head, I yelled at this woman who does not even exist. “At least you have some idea of what your daughter would be like at forty-five! You knew her at seventeen! You knew what she looked like as a grown person! You knew her personality as a young woman! You think YOU can’t imagine what your daughter would be like at forty-five!”

Now that we have two children at home, I find myself trying to picture her here in our lives far more often than I ever did when we had just Jackson. Somehow, the hole where she is supposed to be feels bigger now that we are four instead of five than it did when we were three instead of four. It’s almost like now that we have two at home, it’s what it was supposed to be all this time, and yet it’s not at all what it’s supposed to be.

What role would she play in this barely controlled chaos that is our daily life? Where would she sit at the table? Would her brother idolize her? Would her hair have gotten curlier as it grew or would it still be stick-straight, thin, and wispy like it was the day she left us?

And then there are all the years and questions that remain. What would she be like? Would she be stubborn like me? Silly like her father? Would her hair turn redder as she grew older, like mine did? Would she adopt some of our mannerisms like so many children do? Would we be close? Would she hate me for a time? A long time? Would I pass on to her my worst qualities? My best? How would she spend her life?

I don’t know. I’ll never know. While I’m so incredibly grateful for the seventeen months and twelve days I had to know her, it wasn’t enough.

It wasn’t nearly enough.

Undone

Tonight at dinner, a woman at a nearby table was admiring Ada in Ed’s arms. Then she said, “And she’s got a good big brother, too!” I just looked at Jackson, who smiled at her goofily, as he does with most strangers. “A boy and a girl. That’s good.” Or maybe she said “perfect” or “just right”—I have no idea, because I’d stopped listening after “a boy and a girl.” I smiled at her half-heartedly and looked away again.

I can’t even tell you the number of times I’ve endured the different permutations of this same conversation over the last few years.

“Is this your first?”

“How many kids do you have?” “How old are they?”

“What are you having?” “And what do you have at home?”

And for some reason, everyone thinks that a boy and a girl is “just perfect.”

And maybe it is for some. But it’s not for me.

Because of course, Ada and Jackson have a big sister, too. We had a girl and a boy (“Oh, perfect!”) when Jackson was born, and now we have two girls and a boy. And it’s not even remotely perfect.

I have entered the deepest period of prolonged sadness over Hudson’s death that I have experienced in a long time. Perhaps it is because the first of her peers celebrated his fifth birthday last month with a trip to Disneyworld. Perhaps it is because her own fifth birthday is approaching in a few weeks. Perhaps it is because I can see her face in her little sister’s face every time I put Ada’s cheek next to mine and look in the mirror.

Mostly though, I think it’s the terrible sense of incompleteness. In everything. We’re supposed to be complete now.  We’re supposed to be done.

Although we hadn’t completely decided before Hudson was born, Ed and I both usually talked about having three children. Two seemed too few, four seemed too many. Three seemed a good number. (“Perfect!” “Just right!”)

After Hudson died, I think I became even more convinced that I wanted to three living children. Having lost one child already, having learned how little control I have over the fates of my children, I felt ever more vulnerable to the possibility of losing another. And if that happened, I didn’t want the remaining child to be all alone, with no sibling to share the grief with, with no sibling to help care for aging parents (and we will age earlier in their lives than a lot of other parents will because we were older when we started—and after Hudson died, we were even older when we started again).

But being pregnant at 37 was a much different, and much harder, experience than being pregnant at 32. That third pregnancy was tougher in many ways than the first. And I didn’t plan on going through the really intense newborn and young infant period four times, either—the crying, the constant nursing, the sleep deprivation—all of that is really different at 37 than at 32, too. And if we wait another two years for another baby, it will then be another two or three years after that before all of our kids are finally semi-independent, before we will be in a position to really do lots of adventurous things with our other friends, most of whom are now done having kids. We’ll have almost seven more years of worrying about childcare, rather than three or four. I’ll be almost 40 if and when we have that fourth, which in and of itself is not a big deal, but when I remember that my own mother died of cancer at 56, the calculus changes somewhat.

None of that really matters, of course, in the grand scheme of things. Those difficulties are mostly short-lived, and compared to the lifelong joy that a fourth child, a third living child, would bring us, they can hardly justify a decision not to have one. And yet.

But that’s not the point. The point is that we’re supposed to be done. I’m supposed to be done. I’m supposed to have my perfect three right now. I’m supposed to be gearing up to send a kid to kindergarten next fall. I’m supposed to be busy explaining to my big girl why Disney princesses are not the end-all, be-all of womanhood. I’m supposed to be protecting my two-month-old from two overly enthusiastic siblings, not just one. I’m supposed to already be asking for tables of five. Already booking plane tickets for five.

I’m not supposed to still be thinking about whether to have another child. I’m not supposed to be weighing the pros and cons of enduring another pregnancy, another infancy. I’m not supposed to be thinking about whether I’ll live long enough to get all of my kids at least off to college.

I’m not supposed to be mourning a child.

I’m supposed to be done.

And yet I feel totally undone. Completely, totally, utterly undone.

I Love...

Jackson, I love the way you expand the syllables when you pronounce certain words. "Flashlight" becomes "flash-a-light." "Blimp" becomes "ba-limp." "Magnet" becomes "mag-a-net." Adorable.

TEAM STRONGER, Part Two

I have spent the last year trying not to think much about my cancer journey. I just wanted it to be something that happened to me in the past, a little blip on the radar of my life, which has enough big blips without any help from cancer, thank you very much. While I have spoken at a few Team in Training events as a survivor, I have done no active fundraising for The Leukemia and Lymphoma Society, in part because I just didn’t want to think about it. I didn’t want to be a cancer patient. I didn’t even want to think of myself as a survivor. I just wanted it to be in the past.

But then I got the results of my first post-treatment PET scan. One year after finishing my treatment, the PET scan showed that I am still cancer-free. Four more years of scans like that, and I will be considered cured.

And here’s the thing. There’s a reason that I can practically treat my cancer like I had a long, bad case of the flu. There’s a reason why my treatment was so straightforward and cut-and-dry. There’s a reason why Hodgkin lymphoma is one of the truly curable cancers. There’s a reason why I now get to look forward to a long and lovely life with my husband and kids, both living and gone.

The reason is The Leukemia and Lymphoma Society and in particular, Team in Training, whose participants alone have raised over $1.4 billion for blood cancer research and patient support in the past 25 years.

So in honor of my one-year no-cancerversary, I’m embarking on a new adventure with Team in Training. I’m going to train for my first half-marathon, the inaugural Rock ‘n Roll Raleigh race, on April 13, 2014. And I’ve pledged to TNT that I will raise $15,000 for LLS, either on my own or through a team. And while I am pretty sure I could probably raise $15K on my own, experience tells me that it will be a whole lot more fun and much more special if I do it with a team.

So here I am again. Asking you to train with me. Join TEAM STRONGER. Maybe you have always wanted to train for a marathon or a half-marathon. Or maybe you are already a runner, and this is a great opportunity for you to put your habit to excellent use. Or maybe you have no intention of ever running 13.1 or 26.2 miles, but you think you could probably walk that far to raise money for blood cancer research and patient support.

Whatever your reason, I hope you’ll join me. You can join me if you live nearby, and you can join me if you live far away. If you live in a place where there is a Team in Training chapter, you can train with that chapter but still race with me here in Raleigh. Or if you live in a place where there is no Team in Training chapter, you can take advantage of the “flex” option, where you get all the training schedules, etc., but train on your own and race with me. As a friends and family team, we will also have access to some cool perks, like our own jerseys for race day and special coaching sessions geared towards topics that we are particularly interested in.

All TNT will ask you to do is raise $1200 and cross the finish line, and TNT and I promise you that we will do everything we can to help you do both.

If you are game, then you can register here right now. Just click the link, then choose “Join a Corporate or Friends an Family Team.” On the next page, choose to search by “Team Name” and then enter “TEAM STRONGER.” And then you’ll be on your way. Use the code GOTEAMNC to register for only $25 (which will be applied to your fundraising minimum).

Please let me know if you decide to join the team (so we can make sure you are added to the team page).  And if you have any questions at all, please feel free to email me at mhitchcock at alumni dot unc dot edu.

And if you just cannot fathom doing something crazy like this, you can always give your money!  You can donate to our team here.

Let’s all be EVEN STRONGER.

Deep Breaths

Last night, for the first time in our nearly five years of parenting (four years of parenting live children), Ed and I almost called 911 to summon an ambulance for Jackson in the middle of the night. He is much better this morning, and the pediatrician gave us instructions for what to do in case he has a similar episode again, but for a few minutes at about 4:30 this morning, I was absolutely terrified.

Jackson had RSV at 8 months of age, due to my much-regretted decision to put him in day care at St. Ann’s even when I didn’t really need full-day care of any kind. As a result, when he gets respiratory illnesses, they tend to be more severe than they might be for other kids. We’ve had a nebulizer with albuterol refills in our home for about eighteen months now just in case he has an episode of reactive airway disease symptoms. We’ve probably used it five times during those eighteen months, but when we’ve needed it, we’ve been really glad to have it.

Last night, Ada woke up at about 2:15 and couldn’t settle herself back to sleep. I was so frustrated, because she’s been sleeping through the night (from about 8PM until about 7AM) almost every night for the last several weeks. I have been worried that we’ve been relying on the pacifier too much during the daytime, making it harder for her to settle herself down when she wakes up in the night, which, until recently, she’d been doing very well. So I brought her bed to nurse and then put her back into her bed about 15 minutes later after she’d fallen asleep nursing. About thirty minutes later, before I’d even really been able to fall asleep again, she started fussing again. I waited a few minutes, hoping she’d settle back down on her own, but finally she started to cry, and I went in to her room to try to calm her back to sleep. I didn’t want to give her the pacifier (even though I was sure it would work instantly) because I wanted her to be able to go back to sleep on her own, so I just sat by her bed and soothed her with shushing and patting. It seemed to be working for a bit, and she started to settle into “the zone,” but then she cranked back up again. I was trying really hard not nurse her again—I knew she wasn’t hungry and didn’t want her to rely on nursing to get back to sleep either—so I picked her up, walked around the room with her a bit, bounced her some, changed her diaper. Nothing helped. Her crying kept escalating.

Meantime, we started to hear Jackson crying over the monitor. I assumed that somehow Ada had woken him up (although he usually sleeps like a log) and that he was having trouble going back to sleep, too. Then we started hearing him cough and cry and cough and cry. At first, Ed thought he was just mimicking Ada, but when it didn’t change, Ed finally went down to him.

I finally gave up and brought Ada back into our bed to nurse her back to sleep. Once she got quiet, all I could hear downstairs was what sounded like very hoarse wheezing interspersed with panicked cries. My heart seized and started beating very fast. I yelled to Ed from the bed, “Is he OK?” I didn’t get a reply, so I yelled again, louder, “Ed, is he OK? Can he breathe?” Ed said he wasn’t sure what was going on but that he was going to try giving him a breathing treatment. All the while, I kept hearing that terrible sound. Poor Ada was still latched on and trying to nurse through all of this, but I popped her off, stuck the pacifier in her mouth, and ran downstairs.

When I got down there, it was clear that Jackson was having trouble breathing, but it wasn’t clear why. We couldn’t tell if he was just really stuffy (he’d had just some very minor cold symptoms the last few days, and just a little runny nose, sneezing, and mild coughing yesterday) or if his airway was actually constricted, either from mucus in his throat or inflammation in his lungs. He was able to gasp a few words, but again, we couldn’t tell if he was panicking from being unable to breathe or if he was just crying really hard and couldn’t catch his breath. Intermittently, he would try to cough, making a very high-pitched, hoarse, barking sound, which I knew was characteristic of croup. Ed was already getting the nebulizer set up, and I took Jackson, but as soon as we sat down to try to give him the treatment, he freaked out and started crying even harder, refusing to let the mask anywhere near his face. I knew that if he kept at the hard crying, the breathing problem was just going to get worse, so I pulled him close to me and started rubbing his back and talking in a soothing voice, telling him to try to slow down and take deeper breaths. By this point, Ada had started crying again upstairs, but there was just nothing I could do about it. I knew she would survive a hard crying jag. I had no idea what was going to happen with Jackson, so I knew where I had to stay. I heard Jackson say that he wanted some medicine, so I poured him some Ibuprofen and he was able to swallow it, but he still seemed to have trouble breathing, and each breath sounded like a gasp. We had no idea if he was getting enough air or what was going on. Ed said he thought we needed to take him to the hospital, and I said, “Well, do we need to just call 911?” He said, “One or the other.” Again, we just didn’t know what was happening, and I was terrified that if we took the time to get dressed, get everyone in the car, and go to the emergency room, he might deteriorate quickly.

Adrenaline was racing through every nerve ending in my body. Ada was still screaming upstairs. I could barely think about what to do. As I was imagining calling 911, for some reason I was picturing in my head picking up a corded landline phone like we used to have in our house when I was a kid and pressing actual buttons on it. I wasn’t even thinking that my phone, with a touch screen, was back upstairs plugged in by the bedside.

And then I stopped myself. I took my own deep breath. I took Jackson, who was still visibly panicked and frightened, back into the bright light of his bathroom. I looked at his face and his lips and could see that he was not turning grey or blue anywhere, even around the edges of his lips. They looked pink and vibrant. I decided that if we could just get him to settle down and take the albuterol, his breathing would improve. We sat down on the bed again and tried to get him to take the nebulizer. He again freaked out, this time launching into a coughing fit that brought up so much mucus that he choked on it, and we had another near-emergency on our hands. Fortunately, his cough brought it up into his mouth where I was able to fish some of it out with my fingers. But the breathing still seemed labored. We decided we’d just have to hold him down for the neb. Ed held him tight on his shoulder, and I just held the mask in front of his face for a bit, hoping he’d breathe in some of the medicine. I remembered Hudson’s pediatrician telling us once that it can actually work even better if the kid is screaming because it helps to inhale the steroid deep into the lungs. So I just held it there and hoped.

Within a minute, Jackson realized that the mask wasn’t going to hurt him. He let me put it over his nose and mouth and started breathing more slowly. Within another minute or two, he turned around and faced forward on Ed’s lap and held the mask to his own face. This is when I finally knew he’d turned the corner and was going to be OK. He eventually started talking about the nebulizer (he had a classmate at his old school who took breathing treatments regularly, to the point that Jackson would beg us to give him one at home—he actually loved taking them, oddly enough) and other things in the room, and then I really knew he would be OK. Somewhere in here, I’d heard Ada finally stop crying, which freaked me out, too, so I ran upstairs to check on her. The poor thing had just crashed out from all the crying—I, who have never once let a child cry it out for any reason, had just let my poor, tiny, precious 11-week old baby cry herself to sleep. I could tell she was still snuffling in her sleep. It was awful, but as soon as I knew she was OK, I went back downstairs.

Once Jackson finished the treatment, we all went back into the kitchen to get him a drink, and then we went back to his bedroom. Ed asked if he wanted to snuggle in the big-boy bed with Daddy, and he said yes, and then he said, “Mommy snuggle in the big-boy bed with Jackson and Daddy,” and I said of course I would. So the three of us got into the bed and turned out the light. Ed planned to sleep with Jackson the rest of the night, just so that he would be right there if Jackson had another episode. Once the light was out, Jackson started chatting away, petting Ed’s face saying, “Daddy’s scratchy cheek,” and then mine, saying, “Mommy’s soft cheek,” and so on.

As we laid there, all I could think about was laying in bed with Hudson just like this, one night back in May 2010, when she’d woken up again with fever—we’d given her some medication and kept her in the bed with us to make sure that her temp went back down. After 20 or 30 minutes, she sat back up in the bed between us, chatting and playing with the bed rails. I said, “I think it’s time to put you back in bed, missy.” How could I have any idea it would be the last time I would ever put her in bed again? An hour later, she would wake up crying again, her fever having spiked despite the medicine we had recently given her.  Four hours later, we had her at the pediatrician’s office as soon as it opened. Fourteen hours later, she was having a lumbar puncture in the emergency room that would reveal a very aggressive bacterial meningitis infection. Twelve hours after that, she was in a medically induced coma from which she would never wake. I sat there wishing so much that she was there in bed with us, all arms and legs, cuddling and laughing with her little brother.

As I laid there with Jackson, I remembered that night, Hudson chatting in the bed between us just like Jackson was now doing.  I imagined whatever bug causing this coughing fit marching its way across the blood-brain barrier into his cerebrospinal fluid and causing meningitis in him, too, even as I knew how ridiculous that was.  All I wanted to do was bury my face into his little neck and breathe him in.  I held his hand and slowly let the adrenaline seep back out of my bloodstream. He asked for some water, and I got out of bed to get him his water bottle. On my way to the kitchen, Ada started crying again, so reluctantly I gave Jackson his water, gave him a trifecta (a kiss, a snuzzle—which is a nose rub, and a hug), and left him in the bed with Ed.

I went back upstairs to Ada in the bed. She nursed to sleep again, and I contemplated taking her back to her own bed, but I decided to just lay there with her for a while, too. As frustrated as I was with her night-waking (not that night-waking is not totally normal for a 11-week-old—I had just gotten used to her NOT night-waking), I remembered how much I wished I could have just these kinds of moments with Hudson back. I would be able to sleep later. I settled in next to her and listened to her breathe. I could hear Jackson over the monitor still chatting away to Ed. At about 5:30, Ed finally put Jackson back in his crib and came upstairs. I was still awake, Ada snoozing away in the crook of my arm. I was so tired by this point and knew I needed to get at least a few hours of solid sleep, so I took her back to her room and laid her down in her own bed.

Finally, both kids were quietly sleeping again, just as they’d been before they’d roused us two-and-a-half hours before. I crawled back into bed and spooned with Ed, pulling his arm over me and holding his hand tight against my chest, marveling at how fucking resilient we are. Not long after that, sleep overtook me.

We all slept late. Jackson woke up feeling much better, but we kept him home from school to rest and to monitor him in case he had another episode.

I have no idea how I managed to re-gather my wits in the midst of that terrifying scene in the wee hours of the morning. But just as I was holding Jackson, rubbing his back and shushing him and encouraging him to take deep breaths, I imagine now that Hudson was doing the same thing for me.

Cancer-Free!

I will write more later, but I just wanted to let anyone reading know that my PET scan today was clean. My gut was right.  Thanks for the words of support.