Thursday, July 25, 2013

Shiny happy people

Tomorrow we go to Disney World. And I'm happy about it. Excited to take Shea. Excited to go myself. Looking forward to the break.

Just happy.

Not "happy despite having lost a child." Not "forgetting I'm sad for a moment." Not "happy despite wishing Harper could be on this trip."

Just happy. Which seems an appropriate way to kick off a trip to the Happiest Place on Earth.

The sad moments happen, but they're not nearly as sharp. This weekend was the concern that Harper's bushes are not looking very good. Twinge of pain. Yesterday was another "Congratulations on the baby!" from a seldom seen acquaintance. Twinge of pain. Today was Shea's discovery of a "Baby do not disturb" sign which he hung on the front door. Twinge of pain. A pregnancy announcement on Facebook. Twinge of pain. (Speaking of which, this is a great article: http://www.huffingtonpost.com/sheila-quirke/when-facebook-sucks_b_3132293.html)

Right now they're only twinges. A wince, then gone. Was it really only a month ago that such triggers sent me off to cry by myself? That haunted me for days? That sent me running to my blog for comfort?

So, this is good, right? I'm healing. I'm looking forward. Things are getting better.

But then there's the guilt. And the recrimination.

I worry, sometimes, that I'm too happy. That there's something wrong with me. That I'm going to be judged for that. I find myself wondering if other people are thinking, "How can she be doing X when she just lost her daughter?" I meet other parents who have suffered losses and are so, so sad, and I find myself comparing me to them and thinking, should I be sadder, too?

The truth is, Harper, or the-heart-baby-who-Harper-wasn't, would never have gone to Disney. Nor would, in all likelihood, Shea and I. It would have been pre-surgery, so air travel to a crowded park was likely not an option. So the happiness I feel about this trip is only possible because my child has died. Twinge of pain. 

It is what it is. There probably will be more days of pain, bigger than twinges, back to tears. Being at Disney, surrounded by two child families and young babies may make me feel that way. Or the return of a coworker from maternity leave. Or nothing at all. But for now I'm just happy.

I've not yet reached the stage where I'm worried about forgetting Harper. I still think about her every day. But it makes me nostalgic, not sad, per se. Similar to the way I feel when I think about how quickly Shea is growing.

And I'm happy Harper will in some small way be with us as we visit Mickey's House.






Sunday, July 21, 2013

Tiny teddies

It's maybe a testament to my poor housekeeping skills, or just my utter hatred of laundry, that I seldom see the bottom of my laundry hamper.

It is our habit to tend to skim necessities off the top, or throw the top layer into the washer, with inertia hitting long before we explore the bottomless depths of the large, metal basket. When I do reach the bottom of the hamper, because I've been seized by an obsessive desire to get all of the laundry clean and put away, it is a cause for celebration and surprise, as I discover clothes and sheets and towels long forgotten.

Yesterday, I discovered this habit can bite me in the ass.

I got to the bottom of the hamper and didn't pay the least bit of attention as I scooped it all into the washing machine. So, it took me by complete surprise, as I was folding the clothes still warm from the dryer, when I ran into the tiny pajamas I had packed to take our baby home from the hospital. It took me a long time to unpack our hospital bad - it lurked in the closet for weeks - and when I did, I have a vague memory of quickly throwing clothes, blankets, bras et al into the hamper.

So there it was, a tiny white suit, soft as a cloud, covered in teddy bears.

I distinctly remember choosing those pajamas. In the stressful weeks leading up to Harper's birth, I packed and repacked the hospital bags, nervous that any appointment could turn into labor and delivery without notice. I knew the baby was small, but held on to the desperate hope all the scans were wrong, so I refused to buy any preemie clothes. Instead, I chose the smallest newborn outfits I could find from Shea's discards, beautiful, adorable tiny clothes that he barely wore because he grew out of them so quickly.

I chose the white one with the teddies, instead of anything blue, because I didn't want to reveal to Lou I'd seen the neonatologist's report and knew the testing revealed the XY chromosome.

In the end, Harper never wore her own clothes. Only the tiny loaned onesies and pj's from the NICU, when she wore clothes at all.

Time to put the pj's away. Again.

At least I know there are no more sad surprises lurking at the bottom of the hamper. It is empty.

Thursday, July 18, 2013

3 months

Dear Harper bean,

You would have been three months old today.

I can picture three months. It was at around this time that we put Shea in the jumparoo for the first time, that he was rolling all over his quilt on the floor, that he always seemed to be laughing, and pushing off of any person or object with his strong legs. I look at your picture and wonder what your smile would have been like.

I have to keep reminding myself that you would not have been like Shea. You would not have been a happy, healthy, strong baby. That your road - and ours - would have been so heartbreakingly hard, if you had lived, and that you may have suffered from being compared to your bouncy big brother.

This anniversary does not seem as sad. Maybe time and distance is healing my heart. Maybe I'm delusional, and next month I'll be sobbing on the floor again. Maybe I'm more focused on the future than I was before. Or maybe I've just grown used to that ounce of pain that is always hovering in my peripheral vision.

Your daddy sent me a copy of the photos he'd saved on his phone, and I realized there was a rare one of you without tape on your face. We don't have many of those from your short life. It's the photo he used to show me what you looked like, when I was still paralyzed from the anesthesia, and he could go to the NICU to see you. It's striking how much you look like a "normal" newborn, with no clue as to the terrible journey we'd take together. Still, it makes me smile.

Good night, sweet Harper.




Friday, July 12, 2013

Displacement

It's like revisiting the weeks after Harper was born. The wee hours of the morn, and I am too filled with restless sadness to sleep. So I sit up in my quiet house, thinking and crying and writing. I can't say I miss the breast pump.

Recently, I've begun to feel like I'm leading two parallel lives. The life that is and the one that was meant to be. Maybe it will get better after the period I was supposed to be on maternity leave. Or after the time when we had to think about what to do about daycare because of the heart condition. Or past the time the baby was supposed to have surgery. Or maybe I have to wait all the way past autumn of next year, when I had plans for a family vacation for four - a huge international trip to celebrate 20 years with Lou and his 40th birthday. The trip Lou thought might be too hard with a small child and a baby combined.

Those dates are all inscribed on the mental calendar of the life that was to be, and I can't clear them from my mind. I am slightly displaced in my own life.

Walking between worlds magnifies everything. Everday professional stressers - busy days, tasks that take longer than you expect, difficult people, tedious meetings - don't themselves annoy me, but they do trigger a reflex reaction of, "I'm not supposed to be here." And that's painful. It's true of positive experiences, too - I choke on the words, "I'm happy to be here" because how can I be happy to be somewhere when my presence is only allowed for by the fact that Harper has died? That she was not the baby that was meant to be?

I'm a planner, I think ahead. That is now my downfall. Because I can't escape the eerie sense of those plans, those future visions, walking besides me, overlaid on my actual experiences. Like if I could just turn fast enough, I could see it in my peripheral vision. I could capture that life that was meant to be, where I'm exhausted from having a newborn and a three year old, where I'm happily ignoring the emails piling up from work, where I'm bombarding my pediatrician with questions about whether it's OK to travel with a heart baby, where I'm pitying myself for having to deal with the boots and bar of fixing club feet. It's not that all, or maybe even any, of that sounds all that pleasant. But maybe it's better than not living it.

The email from the vet today made me tear up in the middle of a NIH study section meeting. Not just because its receipt confirms the day we'll be putting my beloved London girl to sleep, but because it's gentle explanation of what to expect brought back many memories of that last night with Harper.

I told Lou that I didn't think there was much else we needed to know to talk to Shea about what was going to happen with London. If nothing else, we know how to talk to a child about death. A hard earned skill set, but one that comes in handy when faced with a pet dying.

This would have happened, on both parallel tracks. London is old, it is her time to go. I try to imagine how it might be different if I was losing her in the absence of losing Harper. I can't do it. It's too abstract, too far from the point on the emotional spectrum where my heart is currently residing.

But I do wish I could lose myself in the soft baby smell of Harper's hair as I weep for my London. I wish these wee hours were spent rocking and nursing, instead of just not sleeping.

Maybe I do kind of miss the breast pump, at least it gave these sleepless nights a purpose.


Tuesday, July 9, 2013

Grief group

Seriously, is there anything more stressful than running late to a grief group? That was my evening.

I'm not sure how I feel about it yet - attending a grief group for infant loss, that is - or whether it's something I'll get anything out of. It's a place for sharing, but not something I can share, here anyways, because the stories there are not mine to give.

But as much as grieftalk likes to emphasize that everyone's experience is difference, we mourn at our own rate, etc., etc... I am beginning to believe that when it comes to grieving parents, we share a lot of common threads. As varying as our experiences, reactions, timeframes, coping mechanisms, et al. are, we recognize something in each other, a kinship that is startlingly appealing.

There's something about being around other grieving parents that makes me feel more real. It's grounding. An interruption from the surrealism of the new normal.

I can't decide if that's healthy or not.

Yesterday, Lou forwarded me an email from his cousin. She'd sent us a picture of the plant grown from bean seeds we gave out at Harper's memorial service. A genuine Harper bean!! I love this.




Sunday, July 7, 2013

Good days

Sometimes I read my own blog posts - they make me cry, they make me remember, they remind me how I felt in that Very Hard Moment.

I write as therapy. It makes me feel better and allows me to soften the cutting edge of raw, intense emotion. Writing helps release the tears when I need to cry and vent the anger when I need to scream. It works - I always feel better after putting it all into words.

The downside of that is that this blog never captures the good days. The times in between the bad, the happy parts of the new normal.

And because I was once a mom reading the blogs of other moms, desperate for reassurance, it occurred to me that I should mention there are good days, too.

In fact, these days, the good moments tend to outnumber the bad.

Yesterday was a wonderful day. I awoke to visiting family and Shea adoring his visiting cousins, got in a good workout at the gym, and watched the Nats achieve victory.

I was not completely without thoughts of Harper - I wore my Harper bean shirt. But having her with us in spirit brought only comfort, not sadness.

Odd as it sounds, Harper's death has intensified my happiness with Shea and Lou. Not that they don't still exasperate me from time to time. Shea is, after all, a three year old, and Lou is, well, a husband, and there are times they separately or collectively drive me nuts (as I'm sure I do to them!) And there are still those sad, raw, mourning moments that I need to myself. But when I'm snuggling with my boy, his sweaty curls against my cheek, reading a book or talking about the world around us, playing endless hours of basement baseball, or holding Lou's hand, laughing at something silly, I am much more aware of the moments we have together. They are much more filled with joy than they were Before. I am so very lucky to have such an amazing family. Losing Harper has made me better understand the concept they always try to drill into you at yoga, of being Present, of awareness of the Now, of paying attention to the tiny details of every moment. And those details - the inflection of Shea's voice as he tells me sincerely funny observations, the feel of Lou's beard against my face, the sight of my boy's sturdy legs as he races around - fill me with joy every bit as acute as the pain the memories sometimes bring.



Even as I type this, we are together as a family, Lou and Shea are working on a puzzle, the dogs and cats are curled up sleeping, and the only plans we have for the day are to spend them together.

And I think, yes, this. My life hugs me.


Friday, July 5, 2013

Quiet

I want it to be quiet.

I yearn for quiet. I want to sit in the cool, still sanctuary of my house and be quiet.

Life is not quiet. My life is not quiet. My life is full of the noise of a boisterous boy, a loving husband, a high-paced job, barking dogs, messes to be picked up, obligations to be met, viney weeds, laughter, friends, meals to be eaten, hugs, new people to meet, connections to explore, wine to be shared, plans to be made - all wonderful, alive, personal things. And that is the way I want my life to be.

But now I also need the quiet.

I process more slowly now, I think. And the noise becomes overwhelming too quickly. I need the quiet. I need the quiet to just feel. To write. To just process. To just breathe.

If the quiet must be broken, I want to be the one to break it. With crying. With screaming, if necessary. With the sound of breathing.

Two days ago, I met a friend for a drink. And it was perfect. We talked about babies and pregnancy (she's pregnant), we talked about Harper, we talked about work and houses and our noisy lives. There was no pain. It felt normal, it felt good, it felt like Before.

When it was over, I longed for the quiet to bask for a moment. Like the calm, quiet reveling stretch after a really good massage. But there was no quiet. There was getting on the metro and getting home and dinner and bedtime and finishing work and the stresses of daily existence.

And the feelings stayed inside, like a string coiled too tensely, and it makes me jittery and restless and sad. I feel more prone to nightmares and sleepless nights.

I miss the days of leave after Harper died when I could lose myself in the quiet. Even the hecticness of the tasks I was setting for myself to get through each day - exercise, organizing, cleaning, crying - felt quiet, like a bubble of white noise I had created for myself.

"Maybe you should take a day off," Lou suggested.

Maybe. But that just compresses time and the noise returns even louder. I think I need to learn to live in the noise again. To get to the point where it's not so jarring, so hard. Much of the time, it really isn't. It's fine. But then it builds up, and I need the quiet.

Today is the two month anniversary of Harper's death. Anniversaries are hard. So very hard. Intellectually, I know they're just a date on the calendar. Still, there's probably a reason every ancient society independently created their own time system. It is human nature to mark time. To record events.

Today is the two month anniversary, and I want to mourn. I need to mourn. And I want the quiet. I want to cry by myself.

I am beginning to have trouble co-existing in the same space as Harper's ashes. I am anxious to scatter them. To set them free. Lou is not there yet. He has his own time scale for processing, for moving towards action. I respect that. However, the presence of the ashes adds to the cacophony around me.

Everyone says I need to do what I need to do. Mourn on my own schedule. Feel what I am feeling. Grieve at my own pace.

Good advice, but totally out of keeping with reality.

You can't make the world stop because you're mourning. You can't tell it to be quiet, to shush it to a volume you can live with. You can't scream Stop talking, stop talking, stop talking!!!  to everyone around you. It doesn't work that way. Life goes on around you, no matter what the day.

And life, well, life is not quiet.

Anniversaries are hard. Really, really hard.


Tuesday, July 2, 2013

Molasses time...

"You're still young, you can have more children."

This is what our neighborhood handyman said to me after I ran into him while walking Denver dog, and he asked about the baby. I took the words as he meant them, kindly, awkward reassurance after being caught off guard by unexpectedly tragic news. I hope so, I told him.

But inside my soul was screaming, I'm not that young! And every single day is passing so very slowly. Every day becomes "If I got pregnant today, the CVS would be X and test results would come back on Y and the baby would be born on Z." I try not to think about the day the termination date might be scheduled. Shortly after the test results come back, I suppose. I prefer to think about due dates. About happy endings. About swelling bellies and rainbows.

And I am wracked with impatience. I miss having a baby to hold.

Yet as slowly as time is passing some days, I look at Shea and feel panicked he is growing older too fast. That soon I will have no children to cuddle and hold. A normal parenting sensation, I'm sure, but made more acute by missing Harper and wanting another baby so badly I ache.

Shea has been asking lots of questions about Harper lately. Mostly to Lou, before bedtime. "Where did she go?" he wants to know. "Is she coming back?" Lou explains again that she died and won't be coming back. That she was very sick, but it was a kind of sick you were born with, not the kind you catch.

He confesses to me that he doesn't know what to say about where she went.

Deep down, I think I still don't believe in Heaven. Too hard, too fictional for my scientific brain to wrap around. But I like to think about it. To embrace the concept. Find comfort in the idea of Harper having a playdate in Heaven with the other lost babies and children. Being happy after death in a way she never got to experience in life. It's a beautiful idea, and it makes me smile to think it.

"Do you want two babies, Mommy?" Shea caught me off guard as we drove home from school a couple of days ago.

"Two babies? Why?" I tried to ask calmly, as tears welled up.

Daddy had told him we wanted a new baby, Shea told me. That a new baby would make Mommy happy after Harper died. "Two babies would make you more happy," Shea explained.

You make me happy, I told him.

"Yeah!" he exclaimed cheerfully.