We booked plane tickets to Paris last night. We are taking a Christmas Eve redeye which will arrive in Paris around 10AM Christmas morning. And we’ve rented a studio apartment in Le Marais for a week.
This decision took a long time to make. As I’ve written before, Christmas has always been my very favorite holiday, and watching others, especially all the kids in our family (I have 12 nieces and nephews), open their gifts on Christmas morning has always been my very favorite part of it. But Christmas is also highly ritualistic in our family, and although rituals are comforting and fun, they also make it so that it’s that much more noticeable when a part of the ritual is missing. We open gifts one by one, in order from oldest to youngest, so that everyone gets to see what everyone else is opening. We’ve done it this way since the first year I can actually remember celebrating Christmas—I was four years old. You can imagine how long this can take, with at times close to 20 people opening presents. Last year, Hudson was put into the rotation for the first time, opening her gifts right between my three-year-old niece Emma and their 67-year-old Poppy. This year, if I were to stay home and participate in this ritual, every time it would come back to the youngest’s turn, that youngest will be Emma, not Hudson. You can see why this seems like an absolutely miserable proposition for me. Even though I knew it would be sad for my family if we were not there to celebrate with them, I ultimately had to decide that it would be a lot harder for me to be there than it would be for them for me not to be there.
So Paris it is. And I’m trying to get excited about it. This morning, 9 hours after we’d bought the tickets and committed to the apartment, as we were getting ready to walk out the door, I started crying and said, “I don’t WANT to go to Paris.” And then I explained that I do want to go to Paris, but I wish I didn’t. I wish I had no inclination to go to Paris at all, because I wish that Hudson were here and that we were making plans to spend a lazy week at home with our families and friends in NC. But it is what it is. So I’m buying guide books and thinking about all the things we want to fit in to our 6 days there. I am mustering excitement.
Similarly, I am mustering excitement about this pregnancy and our new baby. You see other women nesting. You’ll see me mustering. I wrote before about how we debated about how early we should start telling people we were pregnant. One of the reasons I was ready to go ahead and tell people is that I was hoping that everyone else’s excitement would start to rub off on me. It’s not that I’m not really, truly happy that we are having this baby. I am. I really am. I love being a mother. I loved being Hudson’s mommy. It was the most special identity in the world. And I was good at it. I want to be a mother again. Ed and I love being parents and we love each other so much that we want to share that love with children. So it’s not that I’m not happy. It’s just so hard to get excited about anything right now because I am still just so very deeply sad for Hudson and for us. But I’m working on it. I deserve it. Ed deserves it. This little bean deserves it.
To that end, we thought for a long time about what to call this baby in utero. Hudson’s in utero name came so naturally to us that we didn’t have to think very long about it. This go round was harder. We wanted to “keep it in the family” with another ocean creature, but also wanted something that somehow suited the baby, if we could figure out what that was. And ideally, it would be an animal that looks really cute in a plush toy, so we could get one to take the same month-by-month pictures that we did with Hudson and her turtle. Since we are actually going to find out the sex of this baby (more on that decision in another post), I started realizing that if we didn’t come up with an in utero name soon, we’d get to the point where we could actually just name the little peanut. Finally, after Monday’s ultrasound, where the baby was moving around a fair bit (just like it had been during the ultrasound a few weeks back), it struck me. A penguin. Penguins are playful, adorable, and great swimmers. Most importantly, they are highly adaptable to what may often times be a rough and tumble world—not unlike what it must be like to be inside my body right now, and probably not unlike what it will be like to live with me for a long while, given how prone I am to crying jags. Penguin mothers and daddies make incredible sacrifices for their babies, just like mama sea turtles do. And you gotta know that a stuffed penguin is just awesome—I found this one on Amazon, and was amazed when I realized it is made by Melissa and Doug, the same brand that made Hudson’s turtle. So the Little Penguin it is. I’ve also already found a wall sticker to go over the baby’s bed that is similar to the turtle stickers that hung over Hudson’s. And I added a pregnancy countdown to the right side of the blog (and no, I won’t do one of those cutesy tickers—that wasn’t really me even before Hudson died—it’s even less so now).
I’m mustering excitement. I hope it’s working. I think it is.
Friday, November 12, 2010
Wednesday, November 10, 2010
Ashes
I had a totally different topic in mind to write about tonight, something that had been lingering on my mind since this morning, but, such as grief always goes, I was overcome by emotion on my way home from work this afternoon and soon found myself in a heap on the sofa, clutching Hudson’s ashes in one hand and the plaster mold of her right hand in the other.
This is not a scenario I ever imagined. This may sound ridiculous—who ever pictures such a thing? But truly, not even after Hudson died did I imagine that I would ever feel such an intense need to hold her ashes in my arms, to clutch them to my chest and wail over them.
When my mother died, we were all surprised and puzzled by her decision to have her ashes interred in a columbarium at a church to which she did not even belong. The church was in the bigger town near the small town where she grew up in Alabama and she had become close to the priest there while she was sick, but still, we were all a bit baffled as to why she would want her ashes there. Still, it did not matter much to me, because to me, her ashes were just that: ashes. I never had any desire to visit them, for they were not her, and just because her ashes were there, it did not mean she was there. I felt the same way when I thought about visiting people’s graves in cemeteries—wherever those people were, if they were anywhere after they died, they were not in the ground under a headstone. Certainly I did not need to be near my mother’s ashes in order to be near her. I began to think about what I would want done with my own ashes, and all my potential plans involved sprinkling them in places I loved, but not tying them to any particular spot with a marker. Anyone who wanted to visit with me could visit with me anywhere, is how I thought about it. I never wanted any child or loved one of mine to feel any kind of obligation to visit “me” in some particular place. And the idea of anyone keeping my ashes in their home seemed almost macabre to me.
I couldn’t feel more different about Hudson’s ashes. When Ed and I first started contemplating what to do with them, planting them with some trees (likely Christmas trees) in different places special to us seemed like the right thing. We thought we’d plant one at each of our father’s homes, one down at Belhaven where we were married ( even though she never got to visit there), and one at our permanent home in NC, whenever and wherever that home comes to be. That way we could visit “her” whenever we were at any of those places, and a natural way to celebrate her birthday (which is coming up far too quickly upon us—December 1 is three weeks from today) each year would be to decorate the tree at our home with winter treats for the birds that she loved so much.
At the beginning, I thought we’d go ahead and plant the three trees not at our permanent home (which does not yet exist) and sprinkle a portion of her ashes at each. For some reason, I was anxious to do this before this birthday rolled around so I could put my plan into place. After all, if not that, what could we possibly do to celebrate her birthday?
And yet her ashes still sit on the table in her playroom that holds many other pieces of our life with Hudson—photos of her, her favorite books, some of her fingerpainting, her Carolina pom poms, her stuffed lamb with a dishtowel laid over his belly, just how she used to put him down for a “nap.” Her ashes are still in the plastic bag in which they were delivered, closed with a twisty tie at the top. When we received them, they were inside a small white plastic box, cushioned by two puffs of natural fiber, and the box was inside a black shopping bag with the funeral home’s logo on it. Leaving them inside that impersonal box seemed wrong, and yet what container is ever right for your child’s ashes? We found a piece of pottery, a ceramic lidded jar that we had sitting around unused, with a small chip in the lid, and placed the bag in there, still cushioned by the fibers, and put them on her memorial table. I propped her Elmo up so that he has his arms wrapped around the jar. I guess I think of him as keeping her company. Even though I know she is not “there.”
So there her ashes sit. At least for right now, I cannot fathom having them anywhere else. I certainly can’t imagine them being anywhere but in the place that I live, whether in my house or under a tree in my yard.
I’ve taken her ashes out only a few times since she died, usually in moments of intense grief, where I just want to be with her so much and am faced with the reality that those ashes, and the few locks of hair that we cut from her head after she died, are the only pieces of her physical body that remain for me to touch. One time, I held the bag in my hand and turned it over and over. If you’ve never seen human ashes before, I apologize if this becomes rather graphic, but even after the cremation process, some pieces of bone often remain, not having been fully pulverized. On that day, I found myself turning the bag over and over, looking at each of the pieces of visible bone, trying so hard to find something that looked familiar, perhaps a part of a tooth, or the tip of her nose—I have no idea what I was looking for, really. I just wanted so desperately to see some part of her that I could recognize as her.
Today, as I walked home, I began imagining Hudson as an older child, so many moments that I would never witness. I pictured her with long pigtails like I had when I was a little girl, wearing denim overalls and smiling gleefully as she mastered riding her bike without training wheels. You can imagine that it only took a few seconds of this before I was in tears (do you ever get tired of hearing about how often I cry? I certainly get tired of how often it happens myself.) I cried openly on the whole walk home, not caring whether people passing by in their cars could see me. I got home and for no reason that I can explain, I was just drawn to her playroom in the back of the house. I took her ashes out of their jar and then opened up the keepsake box that holds the plaster cast of her hand (not a handprint mold, but a full 3-D cast of her hand, with her fingers cupped in natural, relaxed position), one of her locks of hair, and the handprints and footprints the PICU nurse made the night she died. I took out the cast of her hand and went into the living room, where I sat down on the sofa and clutched it and her ashes to my chest, sobbing for a very long time. I talked to her and said, for the millionth time, how much I miss her, how much I love her, how very sorry I am for her that she is not here to have so much fun with us, how precious her life is to us, and on and on. I slipped my right finger inside the cupped fingers of her hand, just like I used to hold her hand when we walked together. And for the first time, I kissed the plaster mold of her hand—I kissed each one of her little fingertips and put the whole thing up against my cheek, remembering what it felt like to hold her beautiful little hand when it was warm and pink and plump. I clutched both things to my chest again and just held them there. It was hard for me to get up and put them back in their places. This has never happened to me before. When I went to put the cast of her hand back, I pulled out the tiny Ziploc baggie that holds one of her locks of hair. One of the things I miss the most about Hudson’s daily physical presence is being able to sweep that beautiful hair off to the right side—it was too short to cut yet, but was getting long enough that it was in her face if I didn’t brush it aside. One of my favorite things to do was to run my hand over it and push it off her sweet face. It was always so soft to the touch. Even now, I sometimes make the same motion on a picture of her, brushing her hair out of her face, remembering the hundreds of times I did it when she was alive—so simple, so ordinary, and yet so intimate a gesture. I realized that it had never occurred to me before that I could open the baggie and actually touch her hair—until today, I’ve always just looked at it. Today, I opened the baggie and reached my hand in and stroked her hair. It felt just as soft as I remembered. I just never imagined that being able to hold and touch these physical remnants of Hudson’s body would ever be so important to me. I couldn’t have been more wrong. Today, I really, really needed them.
I still think we will plant a Christmas tree at our eventual permanent home in NC. And I still think we will decorate it every year on her birthday. Whether I’ll ever want to sprinkle her ashes underneath it remains to be seen. For now, they will stay right where they are, tucked inside a slightly imperfect piece of pottery, being hugged by Hudson’s Elmo, where I can take them out and hold them anytime I need to.
This is not a scenario I ever imagined. This may sound ridiculous—who ever pictures such a thing? But truly, not even after Hudson died did I imagine that I would ever feel such an intense need to hold her ashes in my arms, to clutch them to my chest and wail over them.
When my mother died, we were all surprised and puzzled by her decision to have her ashes interred in a columbarium at a church to which she did not even belong. The church was in the bigger town near the small town where she grew up in Alabama and she had become close to the priest there while she was sick, but still, we were all a bit baffled as to why she would want her ashes there. Still, it did not matter much to me, because to me, her ashes were just that: ashes. I never had any desire to visit them, for they were not her, and just because her ashes were there, it did not mean she was there. I felt the same way when I thought about visiting people’s graves in cemeteries—wherever those people were, if they were anywhere after they died, they were not in the ground under a headstone. Certainly I did not need to be near my mother’s ashes in order to be near her. I began to think about what I would want done with my own ashes, and all my potential plans involved sprinkling them in places I loved, but not tying them to any particular spot with a marker. Anyone who wanted to visit with me could visit with me anywhere, is how I thought about it. I never wanted any child or loved one of mine to feel any kind of obligation to visit “me” in some particular place. And the idea of anyone keeping my ashes in their home seemed almost macabre to me.
I couldn’t feel more different about Hudson’s ashes. When Ed and I first started contemplating what to do with them, planting them with some trees (likely Christmas trees) in different places special to us seemed like the right thing. We thought we’d plant one at each of our father’s homes, one down at Belhaven where we were married ( even though she never got to visit there), and one at our permanent home in NC, whenever and wherever that home comes to be. That way we could visit “her” whenever we were at any of those places, and a natural way to celebrate her birthday (which is coming up far too quickly upon us—December 1 is three weeks from today) each year would be to decorate the tree at our home with winter treats for the birds that she loved so much.
At the beginning, I thought we’d go ahead and plant the three trees not at our permanent home (which does not yet exist) and sprinkle a portion of her ashes at each. For some reason, I was anxious to do this before this birthday rolled around so I could put my plan into place. After all, if not that, what could we possibly do to celebrate her birthday?
And yet her ashes still sit on the table in her playroom that holds many other pieces of our life with Hudson—photos of her, her favorite books, some of her fingerpainting, her Carolina pom poms, her stuffed lamb with a dishtowel laid over his belly, just how she used to put him down for a “nap.” Her ashes are still in the plastic bag in which they were delivered, closed with a twisty tie at the top. When we received them, they were inside a small white plastic box, cushioned by two puffs of natural fiber, and the box was inside a black shopping bag with the funeral home’s logo on it. Leaving them inside that impersonal box seemed wrong, and yet what container is ever right for your child’s ashes? We found a piece of pottery, a ceramic lidded jar that we had sitting around unused, with a small chip in the lid, and placed the bag in there, still cushioned by the fibers, and put them on her memorial table. I propped her Elmo up so that he has his arms wrapped around the jar. I guess I think of him as keeping her company. Even though I know she is not “there.”
So there her ashes sit. At least for right now, I cannot fathom having them anywhere else. I certainly can’t imagine them being anywhere but in the place that I live, whether in my house or under a tree in my yard.
I’ve taken her ashes out only a few times since she died, usually in moments of intense grief, where I just want to be with her so much and am faced with the reality that those ashes, and the few locks of hair that we cut from her head after she died, are the only pieces of her physical body that remain for me to touch. One time, I held the bag in my hand and turned it over and over. If you’ve never seen human ashes before, I apologize if this becomes rather graphic, but even after the cremation process, some pieces of bone often remain, not having been fully pulverized. On that day, I found myself turning the bag over and over, looking at each of the pieces of visible bone, trying so hard to find something that looked familiar, perhaps a part of a tooth, or the tip of her nose—I have no idea what I was looking for, really. I just wanted so desperately to see some part of her that I could recognize as her.
Today, as I walked home, I began imagining Hudson as an older child, so many moments that I would never witness. I pictured her with long pigtails like I had when I was a little girl, wearing denim overalls and smiling gleefully as she mastered riding her bike without training wheels. You can imagine that it only took a few seconds of this before I was in tears (do you ever get tired of hearing about how often I cry? I certainly get tired of how often it happens myself.) I cried openly on the whole walk home, not caring whether people passing by in their cars could see me. I got home and for no reason that I can explain, I was just drawn to her playroom in the back of the house. I took her ashes out of their jar and then opened up the keepsake box that holds the plaster cast of her hand (not a handprint mold, but a full 3-D cast of her hand, with her fingers cupped in natural, relaxed position), one of her locks of hair, and the handprints and footprints the PICU nurse made the night she died. I took out the cast of her hand and went into the living room, where I sat down on the sofa and clutched it and her ashes to my chest, sobbing for a very long time. I talked to her and said, for the millionth time, how much I miss her, how much I love her, how very sorry I am for her that she is not here to have so much fun with us, how precious her life is to us, and on and on. I slipped my right finger inside the cupped fingers of her hand, just like I used to hold her hand when we walked together. And for the first time, I kissed the plaster mold of her hand—I kissed each one of her little fingertips and put the whole thing up against my cheek, remembering what it felt like to hold her beautiful little hand when it was warm and pink and plump. I clutched both things to my chest again and just held them there. It was hard for me to get up and put them back in their places. This has never happened to me before. When I went to put the cast of her hand back, I pulled out the tiny Ziploc baggie that holds one of her locks of hair. One of the things I miss the most about Hudson’s daily physical presence is being able to sweep that beautiful hair off to the right side—it was too short to cut yet, but was getting long enough that it was in her face if I didn’t brush it aside. One of my favorite things to do was to run my hand over it and push it off her sweet face. It was always so soft to the touch. Even now, I sometimes make the same motion on a picture of her, brushing her hair out of her face, remembering the hundreds of times I did it when she was alive—so simple, so ordinary, and yet so intimate a gesture. I realized that it had never occurred to me before that I could open the baggie and actually touch her hair—until today, I’ve always just looked at it. Today, I opened the baggie and reached my hand in and stroked her hair. It felt just as soft as I remembered. I just never imagined that being able to hold and touch these physical remnants of Hudson’s body would ever be so important to me. I couldn’t have been more wrong. Today, I really, really needed them.
I still think we will plant a Christmas tree at our eventual permanent home in NC. And I still think we will decorate it every year on her birthday. Whether I’ll ever want to sprinkle her ashes underneath it remains to be seen. For now, they will stay right where they are, tucked inside a slightly imperfect piece of pottery, being hugged by Hudson’s Elmo, where I can take them out and hold them anytime I need to.
Monday, November 8, 2010
Joy and Pain
I will be twelve weeks pregnant tomorrow. We had our early genetic screening this morning, where they combine the results of ultrasound analysis, a blood test, and the mother’s age to spit out the likelihood of certain genetic abnormalities. As the technician was examining me, she asked, “This is your second pregnancy?” And I said, “Yes,” and took a deep breath, trying to prepare for what I knew was coming. “And how old is your older child?” she said with a smile, anticipating the glowing response of normal parents in our situation. I, of course, began to tear up and said, “Our older daughter passed away earlier this year.” She said, “Oh, I’m so sorry,” obviously chagrined that she had brought it up. Through my tears, I tried to make her feel better and said, “Oh, that’s okay.” She said again, “I’m sorry.” I spent the next several seconds trying to calm down so that my abdomen wouldn’t be so tense—I was irrationally worried that it might somehow affect her ability to do the ultrasound.
A little while later, but while I was still on the table, the genetic specialist came in and we had to do it all over again. “Do you have older children?” “I was just telling the tech that our older daughter died in May.” Tears again. The specialist, an older woman with a very mama-bear personality (forgive the now co-opted expression, but it really did apply here), immediately said, “Oh, sweetie, you poor thing.” She came over and put a hand on Ed’s shoulder and then put both her hands on my shins and squeezed. This was exactly the kind of reaction I had been waiting and hoping for from someone in the OB’s office from the time we first had to share the news during our first visit with this pregnancy. Sometimes I think doctors just maintain too much professional distance. I understand why they do it, but the compassion and humanity that this doctor showed us helped me feel relaxed and normal almost for the first time since we found out we were having this baby. Her hands on my shins as I was lying on that table, so vulnerable, marveling at the growth of our next baby, crying over the death of our older baby—well, it just changed everything. I continued to cry a little bit as the scan went on, but it felt okay.
Everything on the scan looked fine, but we have to wait for the results of the blood test before we know what the actual risks are. After the ultrasound was over, we went to the specialist’s office where she took a full history from both Ed and me (since I’ll be delivering after age 35, I’m considered “advanced maternal age,” so they do a genetic counseling session in addition to the early screening). She was, again, so full of compassion and motherly love and warmth, yet also very knowledgeable and straightforward. She told us about our options to do amniocentesis and suggested that this procedure is now considered so low-risk that the ACOG says they can offer it to anyone, whether they are in a heightened risk category or not. In tears again, I said, “Well, we’ve already thought about it and given what we’ve been through, we don’t want to take any risks at all.” She totally understood and didn’t say another word about it, then put her hand on my knee and kindly told me that crying is actually good for women’s coronary arteries (but it doesn’t have the same effect on men). We all immediately started to laugh and I said, “Well, then, I will end up with a very healthy heart.”
We mentioned that the infectious disease doctor had told us that the only time they usually see a child’s immune system get overwhelmed by infection the way Hudson’s did is if the child does not have a spleen. The specialist had actually worked with a family who lost two young babies to infections, at which point they discovered that the mother had hyposplenism (a small spleen), and were able to protect the third baby by getting earlier immunizations, etc. She ordered abdominal ultrasounds for both us of just to take a look at our spleens and recommended that we get one for the baby when it arrives as well. When she was finished, I asked her if we needed to check out or anything, and she said, “No, you just have to get a mama hug,” and she pulled me to my feet and embraced me warmly. Wow. We left feeling comfortable, comforted, and well-informed about how we were going forward.
Back during the summer, when Ed and I were trying unsuccessfully to get pregnant again (even though it happened on the fourth cycle, it truly felt like forever—every month that we were not pregnant felt almost like losing Hudson all over again), Jess said to me in an email that she really wanted us to get pregnant because, she said, “I so want joy for you. I know this will bring you joy. I know it won’t take away the pain. But joy and pain has to be better than only pain.”
She was right. And I’ve thought about it over and over again since she first said it. How could we not feel joy today when we heard the whoosh-whoosh-whoosh of this baby’s heartbeat for the first time (a strong 146 BPM) and when we saw these beautiful pictures? (Like Hudson, this baby is measuring several days big. Unlike Hudson, this poor kid is definitely getting my nose.)
And yet, as soon as we stepped out of the office, I started to cry, and kept crying all the way back to the car. I said to Ed, “I just hate that it’s like this. I remember how happy I was when I left this appointment last time.” I couldn’t stop thinking about these two little kids I’d seen in the Johnny T-Shirt catalog last night, a little girl about three years old sitting next to her little brother about a year old. Each wore a UNC t-shirt, but the girl’s read, “I’m the big sister,” and the boy’s read, “I’m the little brother.” I just can’t understand why Hudson never gets to wear one of those and hold her little sibling in her lap.
Extraordinary joy. And still heart-wrenching pain. But indeed, joy and pain is better than only pain.
A little while later, but while I was still on the table, the genetic specialist came in and we had to do it all over again. “Do you have older children?” “I was just telling the tech that our older daughter died in May.” Tears again. The specialist, an older woman with a very mama-bear personality (forgive the now co-opted expression, but it really did apply here), immediately said, “Oh, sweetie, you poor thing.” She came over and put a hand on Ed’s shoulder and then put both her hands on my shins and squeezed. This was exactly the kind of reaction I had been waiting and hoping for from someone in the OB’s office from the time we first had to share the news during our first visit with this pregnancy. Sometimes I think doctors just maintain too much professional distance. I understand why they do it, but the compassion and humanity that this doctor showed us helped me feel relaxed and normal almost for the first time since we found out we were having this baby. Her hands on my shins as I was lying on that table, so vulnerable, marveling at the growth of our next baby, crying over the death of our older baby—well, it just changed everything. I continued to cry a little bit as the scan went on, but it felt okay.
Everything on the scan looked fine, but we have to wait for the results of the blood test before we know what the actual risks are. After the ultrasound was over, we went to the specialist’s office where she took a full history from both Ed and me (since I’ll be delivering after age 35, I’m considered “advanced maternal age,” so they do a genetic counseling session in addition to the early screening). She was, again, so full of compassion and motherly love and warmth, yet also very knowledgeable and straightforward. She told us about our options to do amniocentesis and suggested that this procedure is now considered so low-risk that the ACOG says they can offer it to anyone, whether they are in a heightened risk category or not. In tears again, I said, “Well, we’ve already thought about it and given what we’ve been through, we don’t want to take any risks at all.” She totally understood and didn’t say another word about it, then put her hand on my knee and kindly told me that crying is actually good for women’s coronary arteries (but it doesn’t have the same effect on men). We all immediately started to laugh and I said, “Well, then, I will end up with a very healthy heart.”
We mentioned that the infectious disease doctor had told us that the only time they usually see a child’s immune system get overwhelmed by infection the way Hudson’s did is if the child does not have a spleen. The specialist had actually worked with a family who lost two young babies to infections, at which point they discovered that the mother had hyposplenism (a small spleen), and were able to protect the third baby by getting earlier immunizations, etc. She ordered abdominal ultrasounds for both us of just to take a look at our spleens and recommended that we get one for the baby when it arrives as well. When she was finished, I asked her if we needed to check out or anything, and she said, “No, you just have to get a mama hug,” and she pulled me to my feet and embraced me warmly. Wow. We left feeling comfortable, comforted, and well-informed about how we were going forward.
Back during the summer, when Ed and I were trying unsuccessfully to get pregnant again (even though it happened on the fourth cycle, it truly felt like forever—every month that we were not pregnant felt almost like losing Hudson all over again), Jess said to me in an email that she really wanted us to get pregnant because, she said, “I so want joy for you. I know this will bring you joy. I know it won’t take away the pain. But joy and pain has to be better than only pain.”
She was right. And I’ve thought about it over and over again since she first said it. How could we not feel joy today when we heard the whoosh-whoosh-whoosh of this baby’s heartbeat for the first time (a strong 146 BPM) and when we saw these beautiful pictures? (Like Hudson, this baby is measuring several days big. Unlike Hudson, this poor kid is definitely getting my nose.)
Extraordinary joy. And still heart-wrenching pain. But indeed, joy and pain is better than only pain.
Thursday, November 4, 2010
Passports
It’s been a better day. I’m getting ready to head to New York City tomorrow to spend the weekend with a high school girlfriend. I’m looking forward to being away for another few days and I haven’t been to New York in ages. Next weeked will mark the six-month anniversary of Hudson’s death. I have been thinking about both that and her upcoming birthday constantly for the past few days. Hopefully some time away will help me recharge and prepare emotionally for the onslaught of the next 2 months.
Tonight I was working on getting our passports renewed so that we can take a trip during the holidays. The last time I had started working on this was back in the late spring, when we were considering a trip to the Caribbean with Hudson later in the summer. I hadn’t even applied for a copy of her birth certificate yet (still haven’t—I have neither her birth certificate nor her death certificate), so I was getting ready to do that first so that I could then apply for her passport. All the documents were still sitting in a drawer in my desk at work when I went to clean it out in July.
My passport application has an instruction page full of information about what to do if applying for a child.
How I wish I were.
Tonight I was working on getting our passports renewed so that we can take a trip during the holidays. The last time I had started working on this was back in the late spring, when we were considering a trip to the Caribbean with Hudson later in the summer. I hadn’t even applied for a copy of her birth certificate yet (still haven’t—I have neither her birth certificate nor her death certificate), so I was getting ready to do that first so that I could then apply for her passport. All the documents were still sitting in a drawer in my desk at work when I went to clean it out in July.
My passport application has an instruction page full of information about what to do if applying for a child.
How I wish I were.
Wednesday, November 3, 2010
On Strength
I just want to thank everyone again, just for being here and reading, and also for all the incredibly thoughtful and supportive comments over the last several days. I can’t tell you how much it helps for people to remind me of the things I know in my heart, especially when those things are getting overshadowed by the grief—in particular, that Hudson knew every second of her life that she was loved and that I did everything I could ever possibly have done for her, both before she got sick and after. I’ve been suffering through a period where I’ve felt as bad as I have since late summer—and that is hard, because I want so badly to believe that the grief lessens over time (because how can it ever feel as bad as this again?), only to be smacked in the face with the reality that it is entirely non-linear and unpredictable and will be that way forever. Forever. And it’s on those days that hearing from you helps so much.
I want to write today about something I’ve thought a lot about since the first time I invited people in to witness this terrible journey, which, really, was back when I first posted on Facebook about Hudson being seriously ill. Since then, and particularly since I started writing here, so many people have told me how strong they think I am, how brave they think I’ve been, how well they think I’m handling this, that they would have crawled under a rock and never come out. I won’t argue on these points, but I will just say that from my perspective, I don’t feel particularly “strong.” It’s not that I feel weak—I just feel like this is what it is and I’m just going along the best-- no, the only-- way I know how. A Facebook friend posted a quote awhile back that has continued to resonate with me every single day: “You don’t know how strong you can be until being strong is your only choice.” I heard a similar quote in a movie recently, where a character said, “You don’t know what you can do until you have to.”
I remember when my mom was first diagnosed with terminal cancer, I kept saying, “I can’t watch her die. I can’t watch her die.” I just didn’t think I could do it. And yet I did. Not only did I watch her die, but I helped her do it peacefully, helping my dad and sister take care of her for the final weeks of her life, doing things I never dreamed I was capable of: changing her diapers, dressing her sores, giving her suppositories, telling her it was OK to leave us, holding her hand as she took her last breaths. How did I do this? I still wonder the same thing myself. Just like I wonder how I sat through a discussion where I learned that my child would either not survive this illness or would be disabled for life. Or how I sat and watched them disconnect all the machines that were keeping her alive and then held her while she died. Or how I have continued to get out of bed every day for the last six months. I really have no idea how I did all this. How I am doing this. But you just do what you have to do. And that is all that I am doing now. Because it is all I know how to do.
But with that preface, the point I really wanted to make today is that not everyone has to be this “strong.” Hopefully no one I know will ever have to be this “strong” (and I’m using quotation marks because, again, I don’t necessarily think this is strength—it just IS). Hopefully no one I know will ever have to do what I am being forced to do now.
Another message that I hear so often from so many readers is how much our story has changed the way they look at their lives and their relationships with their children—for that, I am incredibly grateful. As I’ve said more times than I can count, the fact that Hudson’s life can continue to have that kind of meaning and that kind of impact on the world is the only thing that brings me any consolation whatsoever. It brings at least an iota of meaning to something that seems otherwise totally meaningless and senseless. But I’ve also worried sometimes when I’ve read comments and private messages that some people feel what seems to me to be guilt. Some of that guilt is just natural, I know, especially that their children are alive while my child is not. I know it is about as impossible for me to tell those people not to feel that kind of guilt as it is impossible for me not to feel resentful and jealous of them at times. It is in our nature. But the last thing I would ever want is for anyone to feel guilty for feeling frustrated or overwhelmed or short-tempered with their children, or for complaining every once in a while. At least, please don’t feel that way because of Hudson and me.
I’m glad that Hudson’s story helps people have some perspective about how they interact with their kids and really, how they live their lives in general. Life is too short and it is very precious. And we should cherish what is. But life is also life. Things that are going on in your life may be hard. Then you may compare it to what’s going on in my life and think what you’re going through is not so hard. But if it’s hard to you, then it is hard. A healthy dose of perspective is great, but it is perspective. And it is relative. If Hudson were here, and I were dealing with the frustrations of potty training and picky eating and regressions in sleep habits and all the other really hard things about raising an independent-minded toddler, I’m quite sure that I would have really hard days, too. And I might complain a little or at least express some frustration. It is only because I’ve had to go through this unimaginable thing that I can look around me and go, “OK, well, the rest of this is really not that hard.” But not everyone has to be this “strong.” It is OK to have a hard day and to feel like it’s a hard day for you. I would never want anyone to downplay real feelings because they feel like they don’t have it as rough as I do.
I guess I am just saying (rather inartfully, I’m afraid) that I don’t want anyone who knows me or who reads here to ever get so caught up in trying to cherish every moment that you forget to actually do it.
Thanks again for the last several days. I really needed it.
I want to write today about something I’ve thought a lot about since the first time I invited people in to witness this terrible journey, which, really, was back when I first posted on Facebook about Hudson being seriously ill. Since then, and particularly since I started writing here, so many people have told me how strong they think I am, how brave they think I’ve been, how well they think I’m handling this, that they would have crawled under a rock and never come out. I won’t argue on these points, but I will just say that from my perspective, I don’t feel particularly “strong.” It’s not that I feel weak—I just feel like this is what it is and I’m just going along the best-- no, the only-- way I know how. A Facebook friend posted a quote awhile back that has continued to resonate with me every single day: “You don’t know how strong you can be until being strong is your only choice.” I heard a similar quote in a movie recently, where a character said, “You don’t know what you can do until you have to.”
I remember when my mom was first diagnosed with terminal cancer, I kept saying, “I can’t watch her die. I can’t watch her die.” I just didn’t think I could do it. And yet I did. Not only did I watch her die, but I helped her do it peacefully, helping my dad and sister take care of her for the final weeks of her life, doing things I never dreamed I was capable of: changing her diapers, dressing her sores, giving her suppositories, telling her it was OK to leave us, holding her hand as she took her last breaths. How did I do this? I still wonder the same thing myself. Just like I wonder how I sat through a discussion where I learned that my child would either not survive this illness or would be disabled for life. Or how I sat and watched them disconnect all the machines that were keeping her alive and then held her while she died. Or how I have continued to get out of bed every day for the last six months. I really have no idea how I did all this. How I am doing this. But you just do what you have to do. And that is all that I am doing now. Because it is all I know how to do.
But with that preface, the point I really wanted to make today is that not everyone has to be this “strong.” Hopefully no one I know will ever have to be this “strong” (and I’m using quotation marks because, again, I don’t necessarily think this is strength—it just IS). Hopefully no one I know will ever have to do what I am being forced to do now.
Another message that I hear so often from so many readers is how much our story has changed the way they look at their lives and their relationships with their children—for that, I am incredibly grateful. As I’ve said more times than I can count, the fact that Hudson’s life can continue to have that kind of meaning and that kind of impact on the world is the only thing that brings me any consolation whatsoever. It brings at least an iota of meaning to something that seems otherwise totally meaningless and senseless. But I’ve also worried sometimes when I’ve read comments and private messages that some people feel what seems to me to be guilt. Some of that guilt is just natural, I know, especially that their children are alive while my child is not. I know it is about as impossible for me to tell those people not to feel that kind of guilt as it is impossible for me not to feel resentful and jealous of them at times. It is in our nature. But the last thing I would ever want is for anyone to feel guilty for feeling frustrated or overwhelmed or short-tempered with their children, or for complaining every once in a while. At least, please don’t feel that way because of Hudson and me.
I’m glad that Hudson’s story helps people have some perspective about how they interact with their kids and really, how they live their lives in general. Life is too short and it is very precious. And we should cherish what is. But life is also life. Things that are going on in your life may be hard. Then you may compare it to what’s going on in my life and think what you’re going through is not so hard. But if it’s hard to you, then it is hard. A healthy dose of perspective is great, but it is perspective. And it is relative. If Hudson were here, and I were dealing with the frustrations of potty training and picky eating and regressions in sleep habits and all the other really hard things about raising an independent-minded toddler, I’m quite sure that I would have really hard days, too. And I might complain a little or at least express some frustration. It is only because I’ve had to go through this unimaginable thing that I can look around me and go, “OK, well, the rest of this is really not that hard.” But not everyone has to be this “strong.” It is OK to have a hard day and to feel like it’s a hard day for you. I would never want anyone to downplay real feelings because they feel like they don’t have it as rough as I do.
I guess I am just saying (rather inartfully, I’m afraid) that I don’t want anyone who knows me or who reads here to ever get so caught up in trying to cherish every moment that you forget to actually do it.
Thanks again for the last several days. I really needed it.
Tuesday, November 2, 2010
Bailing Out
I can’t write today. You can probably tell it’s been a difficult several days. I bailed on work today for the first time since I started. Last night, just before I went to bed, I started looking through our pictures from last November to find a new one for my computer desktop. As you will see soon, Hudson was really starting to become a little person in ways she hadn’t before—her playfulness, her bright spirit, her loving nature—these all became increasingly more evident in November. I started to sob and could not stop for a long while, just overwhelmed once again by the enormity of what we have lost, what Hudson lost. I slept fitfully and got up insanely early to work a Democratic voter protection hotline. It kept me busy and focused—and kept my mind off the deep sorrow of the last several days. Afterwards, I’d planned to go to work, but by the time I got back to the house to walk over to the office, I was sobbing again. I knew I’d never make it the whole day in the office. So I called in sick. I know it was the right decision, but it still feels bad. I spent the rest of the day zoned out in front of the TV, trying to keep the pain at bay.
So even though I have a lot to say, I’ve handled about all I can handle for right now. Hopefully I’ll be back to work, and to writing, tomorrow.
So even though I have a lot to say, I’ve handled about all I can handle for right now. Hopefully I’ll be back to work, and to writing, tomorrow.
Monday, November 1, 2010
What We Didn’t Know
[Disclaimer: I have not reviewed this post for typos because once I got to the end of it, I just couldn’t make myself read it again.]
November. My goodness. It’s hard to believe. Another month dawns without our girl. And yet we keep going. Somehow.
I have recently found myself preoccupied again with the terrible memories of the moments and days we spent in the hospital with Hudson. I have mostly refrained from writing about them, with two notable exceptions that I can recall here and here. Those moments and many others still haunt me every day. I know that over time, they will fade, but I also know from my experience of having watched my mother die over the course of eight months from pancreatic cancer (another thing I never thought I would be able to live through, but somehow did) that some of those images will never, ever go away. I still remember several moments of that awful time with my mom as if they happened yesterday. I can still feel what it was like to be there.
But I never wrote about those things. I don’t know that I ever even spoke of any of them again. They’ve just been left to sear themselves in my brain. And while I’m still quite sure that some memories of our time in the hospital with Hudson will be with me forever no matter what I try to do about it, I hope that by getting some more of them out in words might help take away some of their bite. One moment in particular is one I’ve been contemplating writing about for a long, long while, and still continue to put it off, because of everything I’ve written so far, it is the saddest and most haunting, at least to me. So I will put it off again today. But I think it is coming soon because I’m not sure how much longer I can hold it.
But the past few days I’ve been thinking a lot about that first day and how much it hurts when I realize that although we were scared, justifiably so, we had no freaking idea how scared we should be. I suppose at the time, that was probably a good thing, but in hindsight, I wonder if I wouldn’t have been better off having some idea of what we were dealing with.
When I took Hudson to the ER around 1:30 on Monday, May 10, it was after a morning of sitting at home with her resting quietly on my chest, head on my shoulder, mostly asleep (at least that’s what I thought). We’d been to the pediatrician, who had examined her and sent us for some lab tests, but told us to go home and wait for the results. I kept asking Hudson if she wanted some milk or water, and I’d hold her cup up to her mouth, and she’d just say, “No.” Finally, I got concerned that she might be getting dehydrated, so I called the doctor again. She tried to take me through some simple tests to see how Hudson’s capillary refill reaction was, but I couldn’t really tell her anything over the phone. I was relieved when she finally just said, “Well, let’s go ahead and get her to the ER for some IV fluids.” I was still not convinced that this was just a bug that Hudson was going to get over, so the idea of going to the ER seemed very good to me, although when I asked if they would evaluate Hudson anymore, the pediatrician said no, because she’d already had a full work-up that morning.
So we went to the ER. I stood in a short line to get registered, but then sat down and waited for about an hour and a half, watching children who were supposedly the “patients” run screaming and laughing around the room—how, I kept asking myself, are those children sick enough to be in line ahead of my child at the ER? Hudson continued to sleep peacefully (again, so it seemed to me) on my shoulder. The triage nurse finally called us in, and frankly, I did everything I could to try to get Hudson seen ASAP. I told her that Hudson had basically been in this same position on my shoulder, hardly moving, most of the morning. The triage nurse showed me a room schedule on the computer screen that showed how crowded the ER was at the moment, but said she was going to try to get Hudson back there right now. She called someone on the phone and said, “I have little Hudson Chaney up here and she really looks pretty crappy.”
Somehow, we got back to a room in the ER. I really don’t remember a whole lot of the details of getting there. The next thing I really remember is seeing her laid out on the bed, head turned toward me with her eyes closed, and then seeing the nurse and the IV tech exchange a glance when they stuck a needle in Hudson’s hand and she didn’t flinch. Not even a twitch. It was then, for the first time, that I started to get scared. Then, after about 20 to 30 minutes of IV fluids, when she didn’t start to perk up, I started to get really scared. I knew that that was what should be happening, and the fact that it wasn’t was not a good sign. But I still had no idea how scared I should be.
At some point in there, Ed arrived. He had no idea how serious things were getting, either, but had just wanted to be with us since we were in the ER. The next thing I remember is going down the hall with her for a chest x-ray and a CT scan. (Later, after Hudson died, I found in my purse the little sticker, never peeled from its backing, that they gave her when she left x-ray—it’s round with a picture of a bear with his skeleton visible, and says “I got an x-ray.” I’ve been unable to part with it, but also have no idea what to do with it, either. Right now, it’s stuck in the sun visor over the driver’s seat in the car.) She was able to sit upright, with straps on her, for the chest x-ray, but I remember her seeming pretty out of it on the CT table. We then went back to the ER room. While we waited for the results of the scans, I remember several times when Hudson would look over at us and reach out for us, only for us to have to push her arm back down because she was yanking on her IV line. How I wanted to just scoop her up and hold her and make her feel better.
The doctors finally came back in with the results of the CT, which showed a pretty major sinus infection behind her right eye, which explained the swelling she’d had there since about lunchtime the day before (when it was barely even visible, but just enough for us to wonder if it was swollen—she’d had no other signs of a sinus infection except a pretty mild runny nose, and of course, the fever). This one ER doc, who seemed about 12 to me (no offense to all my friends who are current and past medical residents), told us that this was often associated with meningitis in children, so they wanted to start antibiotics immediately in case it was bacterial and they also wanted to do a spinal tap.
I really don’t recall how I reacted when he said “meningitis” and “spinal tap.” I suppose it’s possible that the protective effects of shock were already setting in. I don’t remember if I panicked or freaked out. Even now, I don’t think I had any real previous mental associations with meningitis, so nothing was really triggered in my head. I don’t remember thinking much at all except that they would do whatever they needed to do and that Hudson would be fine. I just didn’t imagine that whatever was wrong with her was something they couldn’t cure. I seriously don’t think I ever doubted during those first several hours that they could fix her.
While we waited for the results of the spinal tap, the 12-year-old ER doc told us that the meningitis was likely viral and not bacterial, given the way the symptoms had come on. That worried Ed and me—all our past experience told us that a bacterial infection could be treated with antibiotics, while a viral infection was just a wait-and-see thing. Later, they confirmed that in fact, Hudson had bacteria in her cerebrospinal fluid. By this time, a PICU Fellow had come down to the ER by this point to help assess whether Hudson should be admitted to a regular floor or to the PICU for intensive monitoring. I remember, with utter clarity, the moment when we wondered out loud to the Fellow whether it was better that it was bacterial since it could be treated—she looked at us with a doubtful expression and sort of shrugged her shoulders and said it really just depended on the bacteria. That is the one time during the time that we were there that I feel like someone was not totally honest and upfront with us. Maybe she had a good reason at the time, but I still resent it somewhat. I thought antibiotics were magical and that as long as they had gotten the right ones into Hudson, she would be fine. Of course she would. How could medicine not be able to cure something like this? What we didn’t know.
My recollection of how we got from the ER to the PICU is also fuzzy. There are only a few other things I remember about that first night, things that seem so very different now that we are on this terrible side of things. First, the PICU Fellow in charge (Dr. X, whom I’ve written about before here and here) told us that he could tell from how we looked that we knew this was very serious (I don’t remember this too well, but I guess I must have been crying a fair bit already). He told us then that many children with this condition can end up with permanent brain damage. Even then, I still didn’t really believe that that would ever be the case. We’d gotten her to the hospital so quickly. She had antibiotics flowing into her 40 hours after she first had a fever. She was going to be fine. Although I think I remember asking one of the infectious disease specialists if that was soon enough—it seemed very soon to me. I remember another shrug and him telling us something like “We just don’t know.” I guess I do wonder, too, whether these two doctors knew more than they were telling us at the time. We learned later that with meningitis, the CSF is usually cloudy with white blood cells trying to fight off the bacteria—in Hudson’s case, it was cloudy with the bacteria itself. We also learned later that her white blood cell count was dangerously low. Apparently, it was already obvious to them that it was going to be a very tough battle, but they weren’t that specific with us. What we didn’t know.
I also remember the nurses telling us to stay away from Google. This was a no-brainer to me. Ed and I had spent much of Sunday afternoon on Google trying to make sure that we didn’t need to be overly concerned about Hudson’s uncharacteristic fever—we’d convinced ourselves, wrongly, that she had periorbital cellulitis (an infection of the tissue in the eye socket that makes the eye swell), so we knew there was no point in trying to learn more from Google when we had the doctors right there. And yet, if I had Googled “bacterial meningitis,” I would have known immediately that bacterial meningitis was far more dangerous than viral, and that Hudson could really be in serious danger of being disabled for life or of actually dying. What we didn’t know.
And I remember posting on Facebook these exact words, “Well, Hudson definitely has bacterial meningitis. We are settled in the PICU at Children’s for the night. We are obviously frightened, but hoping that the antibiotics will do their thing quickly.” I wrote “for the night,” completely expecting that by the next day, after a night of antibiotics, fluids, and monitoring, Hudson would be well enough to move to a regular floor. I was frightened, but I still had utter confidence. I think now about the messages that began pouring in at that point and I remember being surprised at how many there were and at their tenor. But when I think about it now, I can see that everyone was probably frantically Googling “bacterial meningitis” and learning what we didn’t really know—that instead of being “frightened,” we should be absolutely terrified. I’m sitting here reading back through them now, crying, as I see the optimism in everyone’s posts, but also the fear that seems to be hidden behind them. What we didn’t know.
Honestly, I don’t guess it really matters now what we didn’t know from the time we got to the ER. We knew only about 12 hours later that things might be so bad as to be irreversible, when Hudson’s pupils started responding unevenly to light. Maybe it’s better that we had those 12 hours to hold on to some hope that she would be OK. But part of me really wishes I’d had some idea of what was in store for us. I think of the time I wasted that night trying to catch a few minutes of sleep. We were still under contact precautions because they didn’t know whether Hudson’s meningitis was contagious yet, so I was trying in vain to sleep with a mask over my nose and face. I was in a foldout chair behind the bed. I kept hearing all the monitors beeping. Ed was sitting at the bed beside, and I remember at one point hearing him laughing and saying to Hudson something like, “Yeah! You have a light on your toe, don’t you?” I imagined the nurse was checking her oxygen saturation monitor, which glowed with a red light, and I guessed Hudson was staring at it, maybe even pointing. I don’t know. But what I do know is these were the last hours that Hudson was ever conscious. That might be the last conscious interaction she had with any of us. If I’d had any idea what was going to happen in the next few hours, I could have been standing right by her side the whole time, looking at her precious face, letting her look into my eyes during the moments that she had them open. Then I might actually remember the last interaction I had with her, instead of just having these mostly fuzzy memories about the whole day.
What we didn’t know. Fuck.
November. My goodness. It’s hard to believe. Another month dawns without our girl. And yet we keep going. Somehow.
I have recently found myself preoccupied again with the terrible memories of the moments and days we spent in the hospital with Hudson. I have mostly refrained from writing about them, with two notable exceptions that I can recall here and here. Those moments and many others still haunt me every day. I know that over time, they will fade, but I also know from my experience of having watched my mother die over the course of eight months from pancreatic cancer (another thing I never thought I would be able to live through, but somehow did) that some of those images will never, ever go away. I still remember several moments of that awful time with my mom as if they happened yesterday. I can still feel what it was like to be there.
But I never wrote about those things. I don’t know that I ever even spoke of any of them again. They’ve just been left to sear themselves in my brain. And while I’m still quite sure that some memories of our time in the hospital with Hudson will be with me forever no matter what I try to do about it, I hope that by getting some more of them out in words might help take away some of their bite. One moment in particular is one I’ve been contemplating writing about for a long, long while, and still continue to put it off, because of everything I’ve written so far, it is the saddest and most haunting, at least to me. So I will put it off again today. But I think it is coming soon because I’m not sure how much longer I can hold it.
But the past few days I’ve been thinking a lot about that first day and how much it hurts when I realize that although we were scared, justifiably so, we had no freaking idea how scared we should be. I suppose at the time, that was probably a good thing, but in hindsight, I wonder if I wouldn’t have been better off having some idea of what we were dealing with.
When I took Hudson to the ER around 1:30 on Monday, May 10, it was after a morning of sitting at home with her resting quietly on my chest, head on my shoulder, mostly asleep (at least that’s what I thought). We’d been to the pediatrician, who had examined her and sent us for some lab tests, but told us to go home and wait for the results. I kept asking Hudson if she wanted some milk or water, and I’d hold her cup up to her mouth, and she’d just say, “No.” Finally, I got concerned that she might be getting dehydrated, so I called the doctor again. She tried to take me through some simple tests to see how Hudson’s capillary refill reaction was, but I couldn’t really tell her anything over the phone. I was relieved when she finally just said, “Well, let’s go ahead and get her to the ER for some IV fluids.” I was still not convinced that this was just a bug that Hudson was going to get over, so the idea of going to the ER seemed very good to me, although when I asked if they would evaluate Hudson anymore, the pediatrician said no, because she’d already had a full work-up that morning.
So we went to the ER. I stood in a short line to get registered, but then sat down and waited for about an hour and a half, watching children who were supposedly the “patients” run screaming and laughing around the room—how, I kept asking myself, are those children sick enough to be in line ahead of my child at the ER? Hudson continued to sleep peacefully (again, so it seemed to me) on my shoulder. The triage nurse finally called us in, and frankly, I did everything I could to try to get Hudson seen ASAP. I told her that Hudson had basically been in this same position on my shoulder, hardly moving, most of the morning. The triage nurse showed me a room schedule on the computer screen that showed how crowded the ER was at the moment, but said she was going to try to get Hudson back there right now. She called someone on the phone and said, “I have little Hudson Chaney up here and she really looks pretty crappy.”
Somehow, we got back to a room in the ER. I really don’t remember a whole lot of the details of getting there. The next thing I really remember is seeing her laid out on the bed, head turned toward me with her eyes closed, and then seeing the nurse and the IV tech exchange a glance when they stuck a needle in Hudson’s hand and she didn’t flinch. Not even a twitch. It was then, for the first time, that I started to get scared. Then, after about 20 to 30 minutes of IV fluids, when she didn’t start to perk up, I started to get really scared. I knew that that was what should be happening, and the fact that it wasn’t was not a good sign. But I still had no idea how scared I should be.
At some point in there, Ed arrived. He had no idea how serious things were getting, either, but had just wanted to be with us since we were in the ER. The next thing I remember is going down the hall with her for a chest x-ray and a CT scan. (Later, after Hudson died, I found in my purse the little sticker, never peeled from its backing, that they gave her when she left x-ray—it’s round with a picture of a bear with his skeleton visible, and says “I got an x-ray.” I’ve been unable to part with it, but also have no idea what to do with it, either. Right now, it’s stuck in the sun visor over the driver’s seat in the car.) She was able to sit upright, with straps on her, for the chest x-ray, but I remember her seeming pretty out of it on the CT table. We then went back to the ER room. While we waited for the results of the scans, I remember several times when Hudson would look over at us and reach out for us, only for us to have to push her arm back down because she was yanking on her IV line. How I wanted to just scoop her up and hold her and make her feel better.
The doctors finally came back in with the results of the CT, which showed a pretty major sinus infection behind her right eye, which explained the swelling she’d had there since about lunchtime the day before (when it was barely even visible, but just enough for us to wonder if it was swollen—she’d had no other signs of a sinus infection except a pretty mild runny nose, and of course, the fever). This one ER doc, who seemed about 12 to me (no offense to all my friends who are current and past medical residents), told us that this was often associated with meningitis in children, so they wanted to start antibiotics immediately in case it was bacterial and they also wanted to do a spinal tap.
I really don’t recall how I reacted when he said “meningitis” and “spinal tap.” I suppose it’s possible that the protective effects of shock were already setting in. I don’t remember if I panicked or freaked out. Even now, I don’t think I had any real previous mental associations with meningitis, so nothing was really triggered in my head. I don’t remember thinking much at all except that they would do whatever they needed to do and that Hudson would be fine. I just didn’t imagine that whatever was wrong with her was something they couldn’t cure. I seriously don’t think I ever doubted during those first several hours that they could fix her.
While we waited for the results of the spinal tap, the 12-year-old ER doc told us that the meningitis was likely viral and not bacterial, given the way the symptoms had come on. That worried Ed and me—all our past experience told us that a bacterial infection could be treated with antibiotics, while a viral infection was just a wait-and-see thing. Later, they confirmed that in fact, Hudson had bacteria in her cerebrospinal fluid. By this time, a PICU Fellow had come down to the ER by this point to help assess whether Hudson should be admitted to a regular floor or to the PICU for intensive monitoring. I remember, with utter clarity, the moment when we wondered out loud to the Fellow whether it was better that it was bacterial since it could be treated—she looked at us with a doubtful expression and sort of shrugged her shoulders and said it really just depended on the bacteria. That is the one time during the time that we were there that I feel like someone was not totally honest and upfront with us. Maybe she had a good reason at the time, but I still resent it somewhat. I thought antibiotics were magical and that as long as they had gotten the right ones into Hudson, she would be fine. Of course she would. How could medicine not be able to cure something like this? What we didn’t know.
My recollection of how we got from the ER to the PICU is also fuzzy. There are only a few other things I remember about that first night, things that seem so very different now that we are on this terrible side of things. First, the PICU Fellow in charge (Dr. X, whom I’ve written about before here and here) told us that he could tell from how we looked that we knew this was very serious (I don’t remember this too well, but I guess I must have been crying a fair bit already). He told us then that many children with this condition can end up with permanent brain damage. Even then, I still didn’t really believe that that would ever be the case. We’d gotten her to the hospital so quickly. She had antibiotics flowing into her 40 hours after she first had a fever. She was going to be fine. Although I think I remember asking one of the infectious disease specialists if that was soon enough—it seemed very soon to me. I remember another shrug and him telling us something like “We just don’t know.” I guess I do wonder, too, whether these two doctors knew more than they were telling us at the time. We learned later that with meningitis, the CSF is usually cloudy with white blood cells trying to fight off the bacteria—in Hudson’s case, it was cloudy with the bacteria itself. We also learned later that her white blood cell count was dangerously low. Apparently, it was already obvious to them that it was going to be a very tough battle, but they weren’t that specific with us. What we didn’t know.
I also remember the nurses telling us to stay away from Google. This was a no-brainer to me. Ed and I had spent much of Sunday afternoon on Google trying to make sure that we didn’t need to be overly concerned about Hudson’s uncharacteristic fever—we’d convinced ourselves, wrongly, that she had periorbital cellulitis (an infection of the tissue in the eye socket that makes the eye swell), so we knew there was no point in trying to learn more from Google when we had the doctors right there. And yet, if I had Googled “bacterial meningitis,” I would have known immediately that bacterial meningitis was far more dangerous than viral, and that Hudson could really be in serious danger of being disabled for life or of actually dying. What we didn’t know.
And I remember posting on Facebook these exact words, “Well, Hudson definitely has bacterial meningitis. We are settled in the PICU at Children’s for the night. We are obviously frightened, but hoping that the antibiotics will do their thing quickly.” I wrote “for the night,” completely expecting that by the next day, after a night of antibiotics, fluids, and monitoring, Hudson would be well enough to move to a regular floor. I was frightened, but I still had utter confidence. I think now about the messages that began pouring in at that point and I remember being surprised at how many there were and at their tenor. But when I think about it now, I can see that everyone was probably frantically Googling “bacterial meningitis” and learning what we didn’t really know—that instead of being “frightened,” we should be absolutely terrified. I’m sitting here reading back through them now, crying, as I see the optimism in everyone’s posts, but also the fear that seems to be hidden behind them. What we didn’t know.
Honestly, I don’t guess it really matters now what we didn’t know from the time we got to the ER. We knew only about 12 hours later that things might be so bad as to be irreversible, when Hudson’s pupils started responding unevenly to light. Maybe it’s better that we had those 12 hours to hold on to some hope that she would be OK. But part of me really wishes I’d had some idea of what was in store for us. I think of the time I wasted that night trying to catch a few minutes of sleep. We were still under contact precautions because they didn’t know whether Hudson’s meningitis was contagious yet, so I was trying in vain to sleep with a mask over my nose and face. I was in a foldout chair behind the bed. I kept hearing all the monitors beeping. Ed was sitting at the bed beside, and I remember at one point hearing him laughing and saying to Hudson something like, “Yeah! You have a light on your toe, don’t you?” I imagined the nurse was checking her oxygen saturation monitor, which glowed with a red light, and I guessed Hudson was staring at it, maybe even pointing. I don’t know. But what I do know is these were the last hours that Hudson was ever conscious. That might be the last conscious interaction she had with any of us. If I’d had any idea what was going to happen in the next few hours, I could have been standing right by her side the whole time, looking at her precious face, letting her look into my eyes during the moments that she had them open. Then I might actually remember the last interaction I had with her, instead of just having these mostly fuzzy memories about the whole day.
What we didn’t know. Fuck.
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