I ran into a senior co-worker at the coffee shop at eight this morning.

He asked, “Are you working today?”
“No, I’m off.”
“Then what are you doing up? Come on, what’s your excuse?”
“Oh, it’s not that early, I’ve been up since four thirty.”
“What?!? Why on earth would you do that?!”

I just shrugged and looked down. Of course I don’t wake up so early on purpose. The words were on the tip of my tongue, I woke up because my son died.

Because one year ago I had a healthy, happy, kicking baby (I don’t think Sacha got sick until the beginning of February, at about 36 weeks).
Because there are only a few more days that I’ll be able to think about how, one year ago, he was happy and healthy and all mine.
Because he is not here now, he is gone forever.
Bitterly, beneath it all: Because you may be older than I am, and have more professional experience than I do, but I’ve had to face more about life and sorrow and myself than you may ever learn during your lifetime.
Because work is not – and should not be, cannot be – the center of my life or the center of my identity, and my work schedule does not, cannot, dictate my personal or interior life.
Because I live in a frying pan.

Yesterday marked 11 months since Sacha’s death. That feels so strange and unreal to me. I don’t want it to be a year. I’m not ready for Sacha’s birthday – which should be marked by first steps, first words, first cake. As with so many times during the past year, I wish time would stand still and let me catch up.

This week I’ve primarily been feeling numb and burned-out, which has more to do with triggers and flashbacks that I’ve experienced lately than with the anniversary itself. Making matters worse, I overheard some extraordinarily insensitive comments last week about children with disabilities, from someone who should have known better. That was a knock-out punch, too painful to even process. So, I’ve just shut down a bit.

I have a lot of ideas for posts: about the damaging effects of viewing an uncomplicated birth as an “accomplishment” rather than a blessing, about the various causes of and treatments for persistent post-surgical and postpartum pain (as a lot of people have found my blog with search terms related to those issues). I’ve had many new readers go through my entire blog over the past week, which was exciting and made me want to keep writing. But I can’t muster the emotional energy to write a “good” post right now. Maybe in a few days or weeks.

When I’m feeling this way, people often recommend watching funny movies. But even comedies can leave me confused and in pain, because there is usually an aspect of family life involved that, in my mind, ends up highlighting how atypical my experience is. I relate much better to movies that involve tragedy, but those can be exhausting too.

There have been many bright spots of comfort, especially kind words and remembrances from friends.

Yesterday, a patient in clinic unexpectedly offered condolences at the end of his visit. He had Googled my name and found Sacha’s obituary. Completely unprompted, he said “I saw that your son died last year. I am so sorry. I can’t even imagine how difficult that must be to go through.” Those few, kind words were like a soothing balm.

Last weekend, I finally got my hair trimmed for the first time since before I got pregnant (the first time in almost two years). I would have put it off for much longer, but the ends of my hair had been frayed and tangled for months, and were getting worse. I cried – a lot. The stylist cried – she was wonderful, very kind and supportive. She did her best to clean up the tips while changing as little as possible, so that no one would notice. I didn’t want anyone to say “oh, you got your hair cut?” A friendly, innocent comment like that would have left me fighting tears over the past week. I tried to write a tighter piece about my hair, maybe even a poem. But there’s just too much right now…

You see, avoiding haircuts was a way to protect my son:

I had overgrown bangs tangling in my eyebrows and glasses throughout pregnancy, but I didn’t want to go near a salon. I was worried about all of the chemicals around, that they would somehow impact Sacha. My main concerns were avoiding anything that might increase risk for early delivery, or increase inflammation during a vulnerable developmental stage in a way that could increase his risk of developing asthma or depression or other issues.

Never in my wildest dreams did I imagine that he could develop a tumor, a cancer, during the very last weeks of pregnancy. Never in my wildest dreams did I imagine that a serious problem would be overlooked in our care, or that his delivery would be so complicated, or that a baby born crying could soon bleed to death from birth trauma, given the awful unanticipated combination of an unanticipated large head pushed deep in my pelvis and an unanticipated coagulopathy resulting from an undiagnosed tumor. I tried to exercise as much control as I could over things that were ultimately out of my control… but so do all mothers. That’s motherhood.

You see, my hair is related to how I see myself as a mother:

I have memories of babies grabbing on to my long hair when I was in junior high and high school – including my youngest cousin, who is now in high school himself. He loved playing with my hair when he was an infant. Babies laughed when I shook my hair in their face. Babies felt comforted when they rested their heads against my hair. When I was pregnant, those memories reminded me that I already knew how to take care of a baby, which made me feel more confident that I could do a good job taking care of Sacha. I thought that he would love my long hair. My hair is very shiny and it catches the light; all babies love shiny things that catch the light. I would shake it around, and he would laugh.

You see, here’s what happened to my hair during and after pregnancy:

My hair grew like crazy during pregnancy, as it does for all women. Then so much of it fell out postpartum, as it does for all women. Even though I wasn’t breastfeeding, my hair didn’t start to majorly shed until 2 or 3 months postpartum. Then, it came out in enormous, never-ending clumps. Every time I lost a hair, I lost part of me that had been physically attached to Sacha. And I lost so, so many hairs; my sweaters, sheets, couch cushions, car seats and shower drain were full of them. They were even scattered across my yoga mat, the place where I sought respite. Each hair seemed to say, “He’s gone.”

I did not control any of that. It had nothing to do with vitamins or diet or willpower. It just happened. It happened to me.

The loss didn’t slow down until 5 or 6 months after I gave birth to my little boy.

You see, getting my hair cut feels like betraying my son:

I know those broken hair tips were a part of my body when Sacha was also a part of my body. Losing him was not just a death, it was an amputation. Losing the hair that was connected to him – a part of him, a part of us – feels like furthering that amputation.

Time is brutal. It is giving me increased understanding and acceptance of what happened to me, and what happened to Sacha. But it’s also taking me further away from the time we spent together. Just one year ago I was cherishing his kicks, happy for each additional day of pregnancy to allow him the time to grow stronger and allow me the time to get my act together. Just one year ago I was tuning the radio to the Spanish station each day, imagining the benefit to Sacha’s developing mind.

You see, about Sacha’s hair:

In Sacha’s Quechua family, childrens’ first haircuts are put off until the child is three or five, then celebrated with a big ceremony. Traditionally, the child’s true/public name and sometimes even their gender are first revealed at this ceremony; in fact, my ex-husband’s name was changed at his ceremony (these traditions have quite recently undergone challenge and change due to government mandates that all children be registered at birth under an official name and gender; previously, babies were publicly referred to simply as “the baby” or “xyz’s baby”, and this practice had many cultural functions – including protection of the young child’s role as an innocent blessing to be cared for and guarded).

I had planned for Sacha to have a hair-cutting ceremony around his third birthday. I would have been done with residency, and planned to be working in Peru (with Sacha). I would have organized it with Sacha’s father, invited Sacha’s whole Peruvian family. Maybe Sacha’s older half-brother would have been a padrino; he would have been 15 by then. He will be 15 by then.

The whole family would have received a lock of hair. Instead, I am the only one who has a lock of his hair, the only lock that wasn’t buried with him.

You see, about me:

I miss my son.

There is a wonderful article in the New York Times today about how the bereaved try to “get grief right”, while it’s actually our culture – including, in many cases, the culture of our helping professions – that’s gotten it wrong.

Very gently, using simple, nonclinical words, I suggested to Mary that there was nothing wrong with her. She was not depressed or stuck or wrong. She was just very sad, consumed by sorrow, but not because she was grieving incorrectly. The depth of her sadness was simply a measure of the love she had for her daughter.

A transformation occurred when she heard this. She continued to weep but the muscles in her face relaxed. I watched as months of pent-up emotions were released.

I’ve been lucky to witness a similar, visible physical transformation time and again when talking to patients who are coping with a whole range of losses and traumas (from normal aging to more profound loss of physical safety and function, from job changes to death of a family member). Acknowledgement of the loss helps. Acceptance of the person helps. Sharing permission to engage in the consuming work of grief (fully, and each in their own manner and on their own timeline) helps.

Grief is hard work, and can only be put off at significant physiological cost. Grief is a difficult medicine to take, but grief is its own cure. Medical professionals can facilitate grief and help to keep the grieving safe, with pills and various programs. But encouraging the grieving to accept and safely engage with their sorrow (if and when their life situation and overall status allows it, and without pushing any timeline or agenda), may be the most important thing we can do.

There are many books that I’ve turned to time and again since Sacha’s death. Here are some of my favorites… Although, for a science-y person like me, used to thinking in terms of statistics and research outcomes, this Psych review article was the most useful thing in the first shock-y days and weeks after Sacha’s death. I found it by repeatedly googling “my baby died”… Which I still do, sometimes.

My descriptions, from bottom to top:
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Last year, I made my first adult New Years resolution, inspired by my baby Sacha. I decided that, as a new mother, I needed to respond to my personal-life worries and anxieties by honestly exploring them (instead of ignoring them), coming up with practical solutions in a timely manner, and asking for help without feeling ashamed. This resolution did not help Sacha have a longer or less painful life. But it helped me be a much more effective and loving mother to him, both before and after his birth and death.

This year, still inspired by Sacha and motherhood, I’m recognizing that I need to be more aware of my own needs. I’ve spent most of my life with the false belief that I don’t really have needs of my own. Within relationships, especially, if I don’t have any needs then I won’t get in anyone else’s way. And if I don’t get in anyone’s way, then (in my childish mind) they won’t have an excuse for treating me badly. But, thankfully, that’s not how the adult world works. I may have learned that I’m responsible for others’ actions, and that others’ needs are much more important than my own, but those things are simply not true.

This “needless” way of thinking has been convenient in my own life, because it keeps what I need from getting in the way of what I want. But I simply have to get over those wants that may be inappropriate.

So: this year I will strive to be more mindful of and responsive to my own personal needs. That’s exactly what I need.

“Death is at your doorstep
And it will steal your innocence
But it will not steal your substance”
~ Mumford & Sons, Timshel

I’ve been relying on this lyric lately, and I’ll let it stand for itself. Except to say that:
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My first journal entry in my “Mom’s One Line A Day” book, which has space for every day of baby’s first five years. I didn’t write much before Sacha was born, because I was afraid to project onto him and I wasn’t sure how to avoid doing that.

He was about 32 weeks along, and a coworker whose pregnancy began after mine had already given birth to her baby prematurely. Her tiny baby was safe & sound in the outside world, but smaller and younger than the boy growing in my body. That was (and still is) such a strange and complicated thought to wrestle with. It led me to think of Sacha more fully as a complete and separate person.

I was incredibly thankful that he had not been born prematurely and that I was still pregnant. Sacha would be born in the Year of the Horse instead of the Year of the Snake. I felt so lucky to be able to give him extra time to grow and develop — and to continue hanging out together 24/7, because I hadn’t quite sorted out what was going to happen next (as someone who “knew too much” even before Sacha’s death, I didn’t allow myself to start planning for him – or celebrating him – until beyond 24 weeks, because I feared that assuming he would survive before then was terrible luck). I was jealous of my sisters-in-law in Peru who mother as a matter of course, bringing their babies and toddlers to work with them each day. They’ve never even heard of things like breast-pumps or nanny-cams. Meanwhile, I was facing a limited maternity leave, and struggling enormously with complicated logistics and a tight budget.

My 2014 resolution for my little family-in-one was to banish avoidance. I was the mom (and I was also the dad), and I had to be realistic and practical. I would be very brave and very calm, and face what I needed to do. And I would take advantage of all our moments together, attempting to nurture the 32-week-old in my uterus just as I would if he had been born prematurely. To make sure that we started off on the right foot. He would come into the world already sensing that he was fiercely loved and protected.

We meditated, took long showers and long walks (even though it was winter, it was easy to keep him bundled up). We read The Grapes of Wrath and The Goldfinch. We read and re-read Our Babies, Ourselves. We learned about bilingual parenting (OPOL was not an option since we only had OP, so ML@H was the method for us). We apartment hunted and found a good place for a baby to grow up. We learned about daycare, and worried about daycare, and found a good-enough daycare. We played with the dog and made sure to really laugh at least once every single day. We avoided the flu and got all our shots on time. We stretched with pressure-point balls and we meditated some more. At least twice a day, at least 20 minutes at a time.

He was not (we were not) sick yet. I have an ultrasound print-out from January 7, and his little head was just perfect, with his tiny nose and pouty lips, and his forehead sloping back just like any other baby forehead. We did not start getting sick until the very end of the month.

I was with him last year – but also not. I could feel him kicking, but I could not see his expressions. I knew when he was asleep and when he was awake, but I couldn’t be sure what memories he was forming. I knew how he was positioned, but I didn’t know how he felt (“If I feel calm and safe, he feels calm and safe too”, I hoped – and I sought out epigenetic research to back up that hope).

This year, I’m again with him – but also not. My heartache reminds me of how much I love him, how well we were bonded, how determined I was to learn from him and give him the mothering that he needed. I can still feel him. But I still can’t see his expressions, still can’t know how he feels.

People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.

Just a reminder from Dr. Elisabeth Kübler-Ross to let your light shine. This amazing lady became a psychiatrist because she was pregnant and, therefore, barred from entering pediatrics residency in the early 1960s. Then she had a miscarriage. Then another. Continuing forward with an open mind and an open heart, she established a model of care for the dying, as well as the first intellectual framework for grief that can be understood and accepted by modern Western culture. Her work has profoundly improved the lives of… well, everyone who has contact with a science-based/Western-influenced healthcare system.

PLAYBOY: It’s been almost four decades since it happened. Does the grief dissipate?

COLBERT: No. It’s not as keen. Well, it’s not as present, how about that? It’s just as keen but not as present. But it will always accept the invitation. Grief will always accept the invitation to appear. It’s got plenty of time for you.

PLAYBOY: “I’ll be here.”

COLBERT: That’s right. “I’ll be here when you need me.” The interesting thing about grief, I think, is that it is its own size. It is not the size of you. It is its own size. And grief comes to you. You know what I mean? I’ve always liked that phrase He was visited by grief, because that’s really what it is. Grief is its own thing. It’s not like it’s in me and I’m going to deal with it. It’s a thing, and you have to be okay with its presence. If you try to ignore it, it will be like a wolf at your door.

PLAYBOY: It’s a loud wolf. It huffs and it puffs.

COLBERT: [Laughs] It does, doesn’t it? It can rattle the hinges.

Stephen Colbert’s father and two older brothers died in a plane crash when he was 10. This article goes on to talk about how he immersed himself in fantasy and science fiction during adolescence as a way to escape. He’s talked about how the grief finally hit him during his freshman year of college, and he finally realized how he couldn’t control it or escape it. He just had to learn to experience it and live with it. This was so evident in the final episode of the Colbert Report — from the show-down with the Grim Reaper and ultimate proclamation of immortality, to closing with Neutral Milk Hotel’s Holland 1945. I may get annoyed that most people in media don’t seem to have much personal experience (see my rant about RadioLab from yesterday), but I know that many people – like Colbert – really do “get it”.