Return to Georgetown

For the first time since Harper's death, I went back to Georgetown Hospital.

It wasn't as bad as I'd feared. I find the place strangely comforting. Maybe just because I'd become so familiar with its hallways and landmarks during the 17 days we practically lived there, not to mention the month or so worth of 3 time per week doctors' visits leading up to Harper's birth.

First stop was the NICU, where I dropped off cookies and brownies for the staff as a small gesture of thanks. They were so very kind to us there, and they work tremendously hard; feeding their sugar habit seemed like the least I could do. Everyone was in a big group meeting, so I didn't have to talk to anyone but the dragon lady receptionist, which was somewhat of a relief.

I was at Georgetown for my 6 week postpartum appointment.

"Did you leave a urine sample?", asked the nurse.

Confused, I said, "I didn't think I still needed to do that."

Every visit, she told me. Still bewildered, I suggested I could leave a sample on the way out.

"That's fine," she smiled.

The she asked, still smiling, "Have you felt any movement from the baby, yet?"

Ouch.

I told her I wasn't pregnant, forcing myself to smile. "I'm here for my postpartum appointment," I told her.

"Oh", she exclaimed, "No wonder you seemed confused about the sample! You're right, we don't need a sample."

Then I cringed as she continued, "So, you've already had your baby! Congratulations! Did you have a boy or a girl?"

"A girl," I quietly told her. Mercifully, the questions ended.

Then she handed me a questionnaire designed to assess the likelihood of me having postpartum depression. I found this darkly humorous. Not that postpartum depression is funny and not that I couldn't still have it. But seriously, asking a woman whose newborn baby died a month ago whether or not she still cries on occasion? Um, why yes, yes I do.

I don't think that's clinically relevant information.

The doctor didn't seem to share my sense of irony - morbid humor is completely wasted on some people.

I came to this appointment prepared for battle. Ready to make the case for why conceiving after a c-section did not need the nine month waiting period my OB had recommended last time before conceiving again. Armed with fact and figures and aggregated data on interpregnancy intervals and risk factors for multiple c-sections and information on uterine rupture versus dehiscences. (I think I must be an incredibly annoying patient.) I was ready to tell him about our meeting with the reproductive endocrinologist and why we decided that IVF and pre-implantation genetic diagnosis (PGD) was not a good option for us.

Totally overprepared. Turns out he has no problem with me getting pregnant anytime I want. Which makes me tremendously happy (even if my data collection did nothing but teach me the meaning of the word "dehiscence")

The crib remains in Shea's room, looking at me. I hope to see a baby sleeping in it someday.

 Just in case, we bought a recliner this weekend - and it rocks... (literally and figuratively!)

I think that I shall never see...

Dear Harper bean,

Guess what, baby girl? Our friends and loved ones have bought you a tree!

Our friend, Miss Kathy, organized a memorial tree for you at Montgomery Hospice's Casey House. It's a magnolia tree and will have a stone with you name on it placed at the base. The long, long list of our friends who contributed is truly awe inspiring.

Your daddy and I are so moved and thankful for this gift; it was exactly what we wanted, a place to go to remember you by. And the heady, warm scent of magnolia flowers are exactly the sort of experience I'd hoped to share with you in this world. This isn't quite the same, but it is a lovely place to sit and think of you and cry and imagine holding your hand underneath its shade and watch Shea laughing in the sunshine.

Like you, this tree is beautiful.

Oh, Harper, you have touched so many lives - not only people we know, but all the people who need hospice, who face the kind of heart tearing loss we had with you. You are a wonder, little bean, and you never even knew.

Rest in peace, little one.

Love, Mommy

A haunted night

Three weeks ago, at about this time, we were holding Harper as she died.

And tonight I can't sleep.

The truth is, I have been thinking a lot about Harper's death over the past few days. Not the fact that she died, but the night of her actual death. It's there when I close my eyes, it comes to me at odd moments during the day.In some ways, that one day of her death has become more vivid, the most distinct memory I have of Harper, which makes me sad. I've been watching the videos of her and looking at pictures, as a way of forcing myself to focus on other memories, to try to banish the memory of that last night which is haunting me.

I think it's because of Lou's Kindle. Which we can't find. When he told me he was looking for it a few days ago, I told him that I thought the last time I saw it was that last night before we went to the hospital. I thought we'd packed it. We were expecting to spend the night there, and reading while holding Harper was something we frequently did - it was a good way to stay awake, and I sometimes even read aloud to her from whatever book I was reading.

Looking for the Kindle began my thinking about that night. And now I can't stop.

Right before she died, Harper snorted milk through her nose. Part of her body's process of shutting down, I imagine. But it was alarming to see and seemed to distress her, so we called for the nurse, who used suction to aspirate her nose and mouth. And it looked so uncomfortable, painful even to have her little nose suctioned like that. At the time, I was alternating between crying and watching her heart rate go down on the monitor and watching the nurse suction - and I wanted to yell, "Stop, stop, you're hurting her and she's dying and stop it, stop it, stop it!" But I didn't.

I wish I had. I kind of hate the idea that that painful looking aspiration was part of her dying moments.

But maybe the sensation of drowning in milk would be worse. Maybe she was beyond feeling anything at that point. I don't know.

 All I know is that at night, I can't stop thinking about it. The anxious rush to the hospital. The never ending detour through Virginia. The quiet hush of the NICU. Her stripey pink pajamas, belonging to the NICU, and the flash of regret that she didn't ever get to wear her own clothes, the take-me-home outfit I'd brought with me. The flurry of activity to move Harper to a private room. The going in and out to set up a cot for us. The pain of being separated from her, even for just a few moments, while they transferred her oxygen line to the new wall hook up. How I kept crying to Lou, "She's dying" as I watched her heart rate go down and repeating to Harper, "I love you, bean, I'm so sorry, I'm so sorry, Mommy loves you." The harsh, loud sobs escaping from me and from Lou as we realized she was gone. That her heart had stopped. The official check with the stethoscope as I held her. The hushed reverence of the NICU staff as we sat with our dead child, as they turned off monitors, shut down the oxygen.

The utter and total surrealism and wrongness of my first experience with human death in the form of my tiny, baby daughter.

We took pictures, you know.

I had asked the nurse to take off the tubes and the tape. "I've never seen her face," I told them. "I want to see her without the tubes and tape. I want to hold her without the wires."

And so we took pictures of her face free of the oxygen catheter. Free of leads and wires and the NG tube, with only the dim echo of tape marks on her cheeks. Because we didn't have the opportunity to do that while she was living, with the exception of a couple of quick pictures taken after the first minutes of her birth.

They're terrible pictures. I can barely look at them. There is no mistaking that she is dead. That she is a dead baby, and that is a truly horrible, terrible thing to behold. Maybe it's because she was so sick. Maybe it was because we were not in any state to think about things like flash and focus and lighting.

But I can't bring myself to delete them either. Her last pictures. Our last moments with her. Before they took her to the morgue.

Another memory of that night - how difficult it was to hear they were taking her to the morgue. How much I really wanted to stop that from happening. Because how could they take my tiny baby to the morgue? An infant on a metal table or slab or whatever? How could that happen, how could that be?

Today was a wonderful day. Full of sunshine and laughter and friends and good food and wine and all things happy. Full of honor for Harper bean and gifts in her memory and time with my family and plans for the future.

Now it is night and the images of that last night are infecting me, there every time I close my eyes.

My father told me that at around the time Harper died, he and his wife noticed that a neighbor's wind chimes, typically known for their obnoxious, irritating sound, played a beautiful song, lovely music. They both remarked on it at the time, not knowing that hundreds of miles away, their grandchild was taking her last breath while her parents cried.  I love that story, love that her spirit was somehow captured by those windchimes.

I just want these memories of that last day, that last night to stop. To cease replaying like a broken record in my mind. Watching your baby die, even when you know it is an end to her suffering, is traumatic. It is haunting in the strongest sense of the word. It is a terrible, terrible thing.

I just want to close my eyes and be able to go to sleep.

Ugly cry

I thought I was past the ugly cry stage.

Ugly cry is a term I need to credit to my friend, Miranda. It is an incredibly accurate description of the soul ripping uncontrollable sobs that bubble up from your gut and bring you to your knees leaving you red-faced, headsore, and achingly empty.

Today, teary and upset for irrational reasons, I let a mug of coffee I was reheating slip and spill all over the microwave. Then the ugly cry came.

"I'm sorry," I sobbed to Lou as I cried on his shoulder. "I thought I was done with this."

It's OK, he told me, hugging me. Shhhh... Let it come.

Other moms told me it would hit me sometimes, for no good reason, impossible to predict. Other moms who had lost their babies,  too. Turns out they were right.

"Lift me up," demanded Shea. "I want to see the spill."

I showered. I retreated to bed. Friends came,  a playdate for Shea,  and I couldn't leave the bed. I'll make excuses for you,  Lou reassured me.

It's ok to stay in bed some days,  the other moms told me.

Not with a three year old,  I joked,  thinking that doesn't apply to me. I'm ok now. They were right. Bed feels good. A place to escape and cry and be sad.

I know I should get up. It's a sunny day. I should eat. I should meet our guests. But I don't want to. My pillow is soft and the world is hard.

Shea has come up to nap with me. I cuddle next to him and sing him the same lullabies I sang to Harper and wish we could just stay here in this moment.

We Are Four

Over coffee, another mom, who had also lost a baby girl, asked me, "Has anyone asked you how many children you have yet?" 

As a mom of two, with only one child, I can imagine how that question might give me pause. I am not sure how I will answer. And it reminded me of a poem that I loved as a little girl myself, but only now understand. In fact, when we were considering readings for Harper's memorial, this is one of the first poems I thought of:

We Are Seven - by William Wordsworth

———A simple Child,

That lightly draws its breath,

And feels its life in every limb,

What should it know of death?

I met a little cottage Girl:

She was eight years old, she said;

Her hair was thick with many a curl

That clustered round her head.

She had a rustic, woodland air,

And she was wildly clad:

Her eyes were fair, and very fair;

—Her beauty made me glad.

“Sisters and brothers, little Maid,

How many may you be?”

“How many? Seven in all,” she said,

And wondering looked at me.

“And where are they? I pray you tell.”

She answered, “Seven are we;

And two of us at Conway dwell,

And two are gone to sea.

“Two of us in the church-yard lie,

My sister and my brother;

And, in the church-yard cottage, I

Dwell near them with my mother.”

“You say that two at Conway dwell,

And two are gone to sea,

Yet ye are seven! I pray you tell,

Sweet Maid, how this may be.”

Then did the little Maid reply,

“Seven boys and girls are we;

Two of us in the church-yard lie,

Beneath the church-yard tree.”

“You run about, my little Maid,

Your limbs they are alive;

If two are in the church-yard laid,

Then ye are only five.”

“Their graves are green, they may be seen,”

The little Maid replied,

“Twelve steps or more from my mother’s door,

And they are side by side.

“My stockings there I often knit,

My kerchief there I hem;

And there upon the ground I sit,

And sing a song to them.

“And often after sun-set, Sir,

When it is light and fair,

I take my little porringer,

And eat my supper there.

“The first that dies was sister Jane;

In bed she moaning lay,

Till God released her of her pain;

And then she went away.

“So in the church-yard she was laid;

And, when the grass was dry,

Together round her grave we played,

My brother John and I.

“And when the ground was white with snow,

And I could run and slide,

My brother John was forced to go,

And he lies by her side.”

“How many are you, then,” said I,

“If they two are in heaven?”

Quick was the little Maid’s reply,

“O Master! we are seven.”

“But they are dead; those two are dead!

Their spirits are in heaven!”

’Twas throwing words away; for still

The little Maid would have her will,

And said, “Nay, we are seven!”

Family of Four

Harper, Harper, Harper

Dear Harper bean,

I ran into a neighbor today who had not heard about you and kindly and cheerfully asked, "How is the baby?" I had to tell her about your birth and your death, and I managed to smile and keep it together through the hugs and the conversation and the sympathy. But the entire way home, I kept replaying the conversation in my mind. As I reached our front yard and saw your azalea bushes, whose flowers are now brownish-gray and dreary, I realized what was bugging me.

I had forgotten to tell her your name, Harper.

And then the tears came.

I'm sorry, bean! I know I promised you I would tell everyone your name, so you would never be forgotten, and I felt awful that I didn't. I know that wouldn't have mattered to you, since your priorities in life were being swaddled and cozy and held with a finger to hold, but it matters to me, little one.

After I dried the tears, I forced myself to take a shower and run an errand. As I got into the minivan we bought just for you (well, for you, your brother, and the puppies), who should be on the radio but our old friend?

Yes, I was parked while taking this picture...

I feel like I should send him a photo of you and let him know how this stupid song always seems to be there to cheer me up. You would look adorable, little bean, if I photoshopped Hammer pants on you!

I'm so sorry I forgot to tell her your name, my beautiful Harper. I'll do better next time. Promise.

I also wanted to let you know that I found out today that I have let go of any regret I feel about spending nine months pregnant, only to lose you so soon. Not the regret of losing you - that will always be there - but the bitterness over the pregnancy itself.

"How is your child?" asked the woman at Weight Watchers as I told her I'd suspended my membership for being pregnant.

As much as I'm not thrilled with having all of this baby weight and not having you here to keep my mind off of it, this exchange made me realize that my fleeting thought that those nine months were a waste of time has been burned away by the gladness I feel for having had a chance to meet you.

I will never regret meeting you, Harper.

Love, Mommy

***

I had a revelation today while doing laundry. I often have revelations while doing laundry. I think it comes from detesting it so much. My mind wanders so I don't notice how much I absolutely hate doing laundry, above any other household chore.

But I began thinking, and overanalyzing, and overthinking, about how I was feeling at that given moment (the answer, by the way, is I was feeling fine, beyond annoyed at the laundry).

And I realized that after so many intense, horrible, raw emotions in such a short period of time, I had just run out. Not empty, exactly, not numb. Just tapped out. Like it was physically impossible to be that sad. Or angry. Or overwhelmed. As if the grief has burned out my nerve endings, and I just no longer had the capacity to feel that depth of sorrow. At least, not right now. I am assuming some day that will come back, the way my legs eventually regained feeling after my c-section.

I suppose it's a survival mechanism, the inability to sustain such monumental grief and sadness for too long a period. Some sort of sensory adaptation. So maybe it really is OK to feel fine each day. Or, in any event, not to feel swamped by sadness.

It has done nothing to stem my aversion to laundry.

(As I was typing this, cousin Jean just made a similar observation. I'm guessing hers didn't involve folding sheets!)

Closer to Fine

This is how messed up grief is.

I feel OK today. Seriously OK. As in, someone could ask me the Dreaded Question ("How are you?"), and I could answer, "Good, thanks, and you?" and actually mean it. I'm thinking about returning to work in a couple of weeks, and the thought no longer terrifies me. I hung up pictures of Harper, I read condolence cards, I walked by the bassinet and smiled at the cat sleeping in the basket - and I felt OK. It was all in all, a pretty normal day, no weeping, no fits of rage. (Well, tears may have stung my eyes when talking about Harper to a genetics counselor today, but it didn't rise to actual crying....)

And now I can't stop wondering if there's something wrong with me?

There's no "right" way to do grief, I'm told - by therapists, by friends, by other parents who have gone through this. But it still feels like it's too soon to have a normal, utterly OK day. It makes me feel cold, heartless, like a terrible parent and human being.

How crazy is that: that feeling OK feels not OK? Bleargh.

I'm not a depressed person by nature. Quite the opposite - although I'm a type-A worrier, I tend to think of myself as generally cheerful. I don't like to dwell on unpleasant things, it seems like a waster of time - I'd rather look ahead to the next good thing. But where is the line between the cheerfulness and uncaring? How can I not know that?

There are still moments of "wrongness" - walking the dogs and feeling like I should also be pushing a stroller, realizing my pants don't quite fit yet and being hit with the oddness of baby weight but no baby, getting into a minivan that was bought to fit two children instead of one. I am still not sleeping well, and I find myself fighting feelings of over-concern for Shea on occasion. But that feeling of unbearable sadness, of I can't stop crying, of feeling like things will never be better, has lifted.

It's like that period after your wisdom teeth have been removed, when everything is healed, and you keep probing the space with your tongue, surprised to feel no pain.

So I probe. I flipped through Harper's memory book today and, for the first time, it didn't make me cry. It made me smile, the way Shea's baby pictures make me smile. Because she was an adorable baby -   I don't think that just mommy bias!  - and the thought of her makes me smile.

(Typing that made me cry a little, so maybe that's better?)

Today is the 17th day. Harper has been gone as long as she was alive. I can type that calmly. Maybe because it is so hard to grasp the truth of that statement?

I don't know. I feel like I need an instruction book to how to properly grieve my child - me, who rejected the idea of parenting books, find mourning to be the most confusing part of parenthood I've ever experienced.

What if life really does just go on? What if I really just do go on living my life? What if I'm never on the floor sobbing about Harper again? That scares me, makes me feel like a monster who could just move on without her heart breaking every moment for the child I've lost.

Sigh. Harper bean, although I didn't realize it at the time, life was easier when my only job was to hold you in the NICU.

I have found my people

There is a support group for everyone at Babycenter.com. Well, for everyone having some sort of interest in babies.

In particular, there is a group/discussion board for anything and everything that could go wrong in the course of having children. And, as I now know, there's an awful lot that can go wrong. (Given that I have a doctoral degree in reproductive biology, you'd think I'd have known that all along, but life is neither a textbook nor a dissertation...)

You can join those boards and access them all through a button simply labeled "Community."

I realized tonight that the past 10 months of my experiences with Harper can be summarized through the Baby Center boards that I joined - my "Community." At every twist and turn I reached out for support, information, and camaraderie and each time I joined a new board I had a sense of, "Finally, I have found my people..."

Every sleepless night throughout my pregnancy and after Harper's birth and death - and trust me, there were/are many sleepless nights! - I would spend hours scouring these boards for the answers that would reassure me, that would make me feel everything is all right. I still do. That's the scientist in me, I suppose. Reassured by research, even if the plural of anecdote isn't data.

My Baby Center board list, in the order in which I joined them:

• Babies and Children with Heart Problems
• AVSD Parents
• IUGR Babies and Kids
• Clubfoot Support
• Special Needs and Medically Complicated Kiddos
• Miscarriage, Stillbirth, and Infant Loss Support
• TTC After a Neonatal/Infant Loss
• Genetic Carriers

Blogging my Harper bean

The only thing worse than having to recount the details of Harper's death is doing so while suffering from a stomach virus. And yet, I dragged my dizzy, dehydrated self to the therapist today. After the long hunt to find her, cancelling the appointment didn't seem to be a very good option.

"What are you doing to cope?", she asked.

So I told her about the strategies. The exercise. The organizing. The hikes with Denver Dog. The Shea time. The planning of trips. The hopes for a new baby. And, of course, this blog.

This blog.

The evolution of this blog was nothing I expected. It began as a private exercise, an outlet for the fear and worry I was feeling during pregnancy, a place to virtually bang my head against a wall when every doctor's appointment yielded more bad news. A place to keep my sanity.

Then it became a tool for sharing news about Harper, for dealing with the overwhelming inquiries from our loved ones.

What is it now?

First and foremost, it is an act of pure selfishness on my part. Writing makes me feel better. It always has. I love writing for many of the same reasons I love reading; because written language captures emotions and experiences in ways that spoken word just cannot do. Beauty can be formed in sentences that would be lost when spoken aloud. When I'm feeling down or sick or lonely, I take comfort in the pages of a well-loved book, losing myself in it like a soft and fuzzy blanket. When I need to shut out the world around me, to take a break from the every day or a given moment, words come to my rescue. The gorgeous and heartfelt words written in the deluge of sympathy cards we received have helped me cry, in a therapeutic way, every day over the past few weeks.

Also in a selfish mien, if I write how I am feeling, if everyone I know is reading it, then I don't have to talk about it. (The antithesis of my son, whose favorite phrase is, "Let's talk about it.") It is the ultimate kryptonite to the instinctive question, "How are you?" I don't have to worry as much about breaking down into full out sobbing mode when talking to someone, because I've already done that over my keyboard.

But this blog has also become something more.

Something disconcerting, in some ways, because I now know there are a lot of you out there reading this. Friends. Family members. Loved ones. Strangers. More than 20,000 page views worth of you. I won't say that doesn't give me pause. These words have represented my raw emotions. You have all ridden right along with me through every agonizing and joyous and bewildering moment of Harper's birth, her life, her death, and our lives without her.

However, there is something freeing about that, too. I am much better now, in even just this past short month, at being honest about how I'm feeling, about being candid in conversation with those I love, about allowing myself to break down, even in public if need me, because I've learned that when you put yourself out there, when you let people know exactly the maelstrom your going through, they hug you back. They catch you. They keep you standing when all you really want to do is fall down in a heap.

More importantly, I strongly believe that Harper lives on thanks to this blog. So many people - some I know well, some I've never met - have written me to tell me how Harper's story has affected them. How they will always carry a peace of her and never forget her. How much they enjoyed meeting her and growing to love her through the lens of these words.

That means something to me. It means that all the time that I carried Harper within me, all of the anxiety and stress and sadness and terror, the 17 short days we had with her - none of that was wasted. Thanks to Harper, some of you will find yourselves stopping to hug your kids more. Or enjoy the moment in which you're living. Or spare a kind thought for a stranger. Or reconnect with your own friends and family. I know this, because I've already heard some of these stories. And it makes me so incredibly happy, in a tears streaming down my face kind of way, to know that my writing has helped give Harper's life such extraordinary meaning.

Today, once the sickness had taken its toll and I was lying about to miserable to do anything else, I read Emily Rapp's book, The Still Point in the Turning World, which is about her son, Ronan's life and death with Tay Sachs disease.

Reading a book about a baby dying of a rare genetic disorder two weeks after your own baby has died may seem like an odd choice of reading material.

But it's actually comforting to read about the experiences of another mom who has been through this. I found myself relating to so much of Emily Rapp's story - the surprise diagnosis despite all the genetic testing, the balance of wanting your child to live longer while also wanting to see a quick end to suffering, the agony of making hospice care decisions, the "wrongness" that you feel at the death of a baby, the community of strength you build from other mothers whose children have or had the same disease, the fierce determination that Every Single Moment of your baby's life be filled with love, even if you're not really sure he or she can actually see/hear/sense you. The driving need to write about it all, perhaps making more sense in her case, given she's a professional writer. Emily Rapp clearly also loves language - and the quotes and readings that are sprinkled throughout her book express what she's feeling - and what I'm feeling - in a way that is a truly amazing.

I may have read her book even had we not gone through the experience with Harper. But I don't think I would really have appreciated it the same way.

I think what she went through with her son, who seemed fine for the first months of his life and then steadily declined over two years, sounds so much harder than our journey with Harper, who we barely had time to get to know, whose diagnosis was clear from the first day. But, as Eli Wiesel has said, it is impossible to compare tragedies.

"It is so new," my therapist told me. "Time will help."

It doesn't feel new, I told her. I feel like I've been mourning Harper forever.

"In some ways you have," she said. "This was not an event of one month or two weeks. It was 9 months of stress and worry and bad news, followed by an intense month of unimaginable loss and heartache. It takes time to recover from that."

Going back and reading this blog, I realize there's wisdom there.

Lou unexpectedly had to work late, so I dragged myself out of bed a second time, to pick Shea up from school. He hopped out of the minivan and announced he wanted to water the flowers and, specifically, Harper's bushes.

"Thank you, Shea," I said to him, "It was very nice of you to offer to do that."

"I will water the bushes and they will grow and Harper will be happy," he informed me, smiling.

Can't argue with that.

Two weeks

Two weeks ago today I held Harper for the last time, and it is really hitting me hard. I woke up so sad and angry and bitter.

Irrationally angry. Tearfully angry. Angry over stupid, petty shit. See? Angry enough to swear, which I pretty much never do.

Angry that this happened to us. Angry that there are terrible people in the world with kids that are alive and healthy, and ours isn't. Angry that people I care about have had to live through this. Angry that my house is a mess again and I need to clean up the dining room, which is almost an altar to Harper's memorial, because we're having guests for dinner, but I can't bring myself to do it. Angry that my pets are getting old and having accidents in the house, but I can't bear the thought of losing anyone else right now. Angry that I forgot to buy coffee beans again, and I could really use a cup of coffee. Angry that life is going on and that I feel like nobody else is as sad as I am right now about Harper's death. Angry that I had a c-section so I have to wait six months before I can think about another pregnancy. Angry that I didn't spend the full day with her on that last Sunday, that I came home, that I wasn't there every minute of her last day. Angry because I used to love lazy Sundays, and now I wonder whether a Sunday will ever feel happy again or if they will always be "it has been x number of weeks since Harper died."

 Angry that I feel angry, because it's such a useless, unproductive emotion.

It sucks. The whole thing just sucks.

Angry!!!!!

Happy One Month, Harper bean!!

Dear Harper,

One month ago today, you were born. Your daddy and I cried happy tears when the doctors told us you were a girl, despite our confusion over the chromosome results. We spent most of the rest of the day crying sad and scared tears, and both the happy and sad moments with you have been a non-stop racing blur over the past four weeks.

Today is a day I should be posting a cute picture of you on FB, with a caption along the lines of "Happy Birthday, Harper - I can't believe it's been a month already! Love you, baby girl!" Instead I'll do that in this blog about your life and death.

Love you, bean!

We celebrated your birthday today by having a normal day as a family. Taking your big brother to a truck touch, where he had an amazingly fun time driving a fire truck, sitting in a Bobcat, and riding up and down on a truck liftgate. I managed to smile at a new baby, born not long before you were, and not burst into tears. We had lunch with friends, and I was able to mention how much you hated having your temperature taken, even more than getting poked with needles, also without weeping. Shea has been regaling me with silly pretend stories all day, and I've been delighting in my clever, imaginative boy. I took the dogs for a long walk in the cool spring air, and teared up only a little at a stray memory of an art show I had attended a couple days before you were born, still full of promise about the baby to come.

I wish you were here, little bean, but we've honored your memory by having a happy, happy day.

Love, Mommy

Things I didn't realize

I didn't realize how important my self-serving rituals of exercise, organization, long dog walks, and meditation were until they were disrupted yesterday by Shea being home sick.

In some ways, it seemed nice to be home with Shea. Nobody needs their mommy more than vomiting, feverish little boys. (Actually, in my experience, this desire to reach out to mommy when sick extends into adulthood...) And Shea was requiring my full attention. "I need you to sit next to me, Mommy," my poor sick boy told me. "I want to 'nuggle."

But at the end of the day, when I'd had no outlet for the sadness and tension and numbness, I began to break down. I lost it when Lou was a couple minutes late to be picked up. I lost it during a movie scene where ashes were being spread in Udaipur (one of my favorite cities in the world.) I lost it when someone walked by with a newborn in a Bjorn. I lost it when Shea held up a picture of Harper and cheerfully told me, "Look, it's baby Haper. She died." - grinning with pride because he'd gotten the facts right. I lost it because I was just so damn sad about it all. I leaked and leaked tears.

Today was a better day.

I didn't realize how many friends and colleagues had experienced loss of a young child. A baby or young child dying is something that happens to other people. Something you read about in the Huffington Post parenting columns or see on a Lifetime movie. It is supposed to be rare, tragic in part because of its infrequency. Turns out this is a pain that a lot of people are living with. People we know. My heart breaks not only to learn of their loss, but of our ignorance of their loss. Everyone has been so amazingly supportive of our family; I want to be able to give that love back.

They have shared their stories and made me cry and given me hope that life goes on. And they make me want to be a much kinder, more understanding person - who knows what the people around us are going through or experiencing? It makes me want to hug random strangers because there are a lot of moments right now when I could use a hug, and I suspect there are others out there who probably feel that way, too. We are not alone. That makes me feel both comforted and dreadfully sad at the same time.

I didn't realize it would be so much easier to pack away the baby clothes than throw away the flowers. In some ways, I've already shed tears packing away those tiny little outfits. They were Shea's, and I mourn and cry (in a happy way) every time he goes up a size and I have to pack away those little, bitty clothes, a visible sign that someday my son will be too big to curl up in my lap and 'nuggle (or that some day he'll add the "s" back onto that word!) It did make me wonder about the etiquette of baby gifts for a baby who has died? Do we return them to the giver? Or pack them away in hopeful promise of another baby? (Shea looks at the baby things now and solemnly tells me, "Those are for a new baby who will come later.")

The flowers, on the other hand, I can't bring myself to deal with. Gorgeous arrangements sent in memory of Harper are wilting on my dining room table, like a scene from Miss Havisham's house, and I just don't want to throw them away. It just seems too final.

I didn't realize who read my blog until I mentioned I was having trouble finding a therapist and was suddenly inundated with kind referrals and recommendations. Thank you all, I really appreciate it! Progress has been made on that front...

I didn't realize how much I wanted a little girl until I lost one. Throughout my pregnancy, although I seldom confessed it out loud, I was on Team Boy. Before Shea was born, I was all about girls - I only have sisters and mostly male cousins, what did I know about boys?!? But after Shea came into our lives, I couldn't imagine anything more perfect than a little boy. I had visions of brothers sharing bunk beds. The night Harper was born, as we revealed the chromosome results were XY, Lou expressed disappointment we weren't having a little girl, as he had visions of walking her down the aisle some day and daddy-daughter dances.

 After Harper, I find myself attracted to very girly things. Tiny, frilly dresses. Stationary with delicate pink flowers. Sparkly shoes. Blonde ringlets and hair bows. Adorable tomboys in overalls. Maybe I'm not as on Team Boy as I thought...

Finally, I didn't realize that the Coffee House station on satellite radio would become the perfect soundtrack to my life. Acoustic, emo versions of songs and singer-songwriters who manage to make even the happiest songs sound sad and poignant. It fits my mood, and I can't stop listening to it.

An addendum...

I didn't realize stress can make your head itch! Seriously, this is a real thing. My scalp and face have been itching ferociously for no apparent reason. Apparently this can be caused by stress and anxiety, a physical manifestation of mourning. Who knew? It is immensely irritating. Literally.

The vigil

The first time your child gets sick after your other child dies turns out to be nerve wracking.

It is 4 AM and Shea has spent the past few hours spewing forth a torrential sea of vomit. No big deal, I'm sure, just one of those stomach bugs that all small children get from time to time. Not even accompanied by a fever.

Yet, as tired as I am, I find myself unable to return to bed. What if he chokes on the vomit? What if this is something worse? How can I go back to bed when my child is sick? And so I keep watch. Watching the beautiful face of my son as he sleeps, finally, peacefully, in his bed.

As I rocked Shea, who after vomiting through several sets of PJ's has been convinced to sleep in only his diaper, wrapped in a soft blanket, my heart ached for the baby I was not rocking. I thought of how I expected my 4 AM vigil in this chair to involve nursing a newborn.

Tonight, Shea needs his mommy. And it felt good to be needed, to rock him and feel his soft weight in my arms, falling asleep on my chest, to stroke his hair and cuddle him. To help him feel better.

I miss Harper. Not just the baby I don't have, but Harper specifically. I miss her downy hair and pushed in chin. I miss her quirky extra finger. I miss the feather delicate weight of her, so different from the solid boy weight I hold tonight. I miss kissing her forehead and her tiny squeaking cries.

Good night, Harper bean. I wish I could have helped you feel better, too.

The "D" words

In every conversation with hospice or counselors or other parents, one phrase that keeps reappearing is "we don't talk about death."

And that's true. Even typing this blog, I find myself hesitating as I type words like death, dead, dying, died. When talking or emailing, I tend to use euphemisms, like "Haper's passing" or "We lost her" as if we've lost track of her at the mall or beach, and she'll turn up any moment.

But baby death is eerily like pregnancy or the newborn stage, where you're reduced to thinking of everything in days or weeks. Yet, unlike making or raising a baby, with Harper's life, there will be no progress - she will always only have 17 days. Death, on the other hand, progresses.

How many days has it been?, a mother - who runs a support group on infant loss - asked me this morning. Nine days, I told her, without hesitation. It will be four weeks on Thursday since she was born and nine days since she died.

It gets better, she told me.

The only thing worse than the sadness is the guilt when you don't feel sad. And the obsessive behavior used to distract from both the guilt and the sadness.

In the past couple days, there have been moments of actual happiness. We've begun planning a trip to Disney, and I found myself excited for the first time about a future plan. But then I remember the only reason we can do this trip - Lou has a conference and Shea and I will be joining him - is because our little heart baby isn't here (we weren't sure we'd be able to take her, when I was pregnant, since the heart condition may have made travel difficult).

Then the wave of guilt hits.

Shouldn't I be sad in every moment? Where is the line in which you're not a horrible person because you're going about your everyday activities, you're laughing or planning for the future, you're enjoying life again, you're not thinking about your baby who has died? When is that OK?

Eight days? Nine days? Three weeks? Three years?

Is it OK that I felt happiness on day eight? That seems too soon.

Today I am back to sad. In some strange way, that feels better. Sad seems normal. Sad seems right. As much as I hate the uncontrollable crying, the bursting into tears at a kind note or an NPR story on dying rhinos (yes, I actually did that, the rhino was crying and the sound made me weep), it feels like what you should do when your baby dies. Waking up after a night of nightmares and not wanting to get out of bed, which was the start of my morning, fits my pre-conceived notions of a grieving mother.

Enjoying a hike outside with my dog feels wrong.

Normal life seems so abnormal now.

To distract myself, I obsess. I turn my brain off and make myself busy. I organize. I clean. I plan.I research.

Basement playroom = nearly done. Appointments with counselors and my trainer = booked. Obsessive exercise = natch.

Reams of research on how soon you can get pregnant again after a c-section = saved and printed.

Still, I avoid the chores directly related to Harper's death. Cleaning up from sitting shiva. Putting away baby clothes. Figuring out where to put the bassinet. Writing out thank you notes.

"Are you OK?", Lou asks all the time, giving me hugs.

Stop asking me that, I tell him. It's a question I can't answer.

One week: To my daughter on Mother's Day

Dear Harper bean,

I am running out of things to say to you in your absence. I still like to believe you could hear the sound of my voice when we were together. It makes me secretly glad we never had your hearing tested.

It feels like a lifetime ago that I last held you. Forever ago that your tiny fingers grabbed mine. Eons since I last told you I loved you and sang you "Gone the Rainbow."

I look at pictures of you, of us, and I am having trouble believing you were a real, live baby in my arms only one week ago. That it has been less than a month since you were born.

My sense of time has been completely altered. Every moment moves with agonizing slowness, yet it seems like the three weeks since you were born went by in a heartbeat.

I love you. And I am trying so very, very hard not to forget you while trying to still be a good mom and present for my boo, your big brother, Shea. It is so very, very hard to do.

I wish we were spending our first Mother's Day together. It's another beautiful, sunshine filled day, and I would have loved sharing it with you.

Love, Mommy

PS - Today we planted the beautiful azalea bushes we bought for your memorial service in our yard. We will look at them and be reminded of you always.

Ain't no sunshine when she's gone

I am sick of being overly sensitized to everything. Of plunging into sadness with no control, because of an offhand comment, a visual image, a song on the radio. I am just ready to wake up and feel like myself again.

What made me cry today?

Lou carelessly commented to Shea, who spent a rollicking good time playing with his Papa this morning, "It's nice to be the only grandchild!" I fled weeping into the kitchen.

My students' term papers were due yesterday. Every email included well wishes for me and my new baby. Every one was like a burning brand to my heart.

Facebook suddenly seems filled with happy baby pictures. I really hate that the sight of babies, which should be nothing but a source of joy, makes me so very, very sorry for myself now.

Getting ready to go out to the Nats game, I thought about the picture I'd planned to take at our baby's first game - mirroring a similar picture I took with Shea at a few weeks old - I thought I would frame them together. I sobbed on the floor, having deliberately shattered a plastic magazine holder I was planning to dispose of anyways. Breaking it actually made me feel better, but I decided breaking my own possessions is probably not the healthiest or most affordable solution for my sadness.

The song, "Ain't no sunshine" has been stuck in my head since Harper died, since that phrase sort of fits my mood perfectly. Sting's acoustic rendition came on the radio today and sent me spiraling into a host of memories of the day Harper died. Was it really less than a week ago?

The Nats game was the hardest of all. We walked the exact same route we walked on Opening Day, when I was pregnant and looking forward to our baby's arrival. We passed no less than 4 pregnant women and several newborn babies along the way. Everyone's shirt read "Harper." Numbness set in.

"Why did Harper go away?" Shea asked on the way home.

"When people die," I told him, "they go away, and they don't come back. We don't see them anymore."

"Oh," he said, thinking about it. "Why?"

An excellent question,

I am not, by nature, a sad person. I'm cheerful. I look to the positive. I don't see the point in dwelling. It is driving me absolutely nuts to be this sad at any given moment. To not have control over my emotions.

It's OK to let yourself be sad, everyone says. It takes time.

Has it really only been six days?

Limitations of perfection

Everything was absolutely perfect for Harper's memorial. The weather was lovely, the words we chose were heartfelt, the hugs we received from family and friends and colleagues were so much better in person than the virtual ones that have been pouring in, the flowers and pictures were beautiful. Shea sang to himself, a beautiful song, as he played at our feet during the service. An adorable caterpillar crawled by as we spoke, and a hawk landed in the trees above - it was not hard to believe they somehow capture Harper's spirit, with us, watching over us.

And the whole day, in all honesty, felt like a giant hug. I was happy that our little bean touched so many and that we had such an extraordinary net of love and understanding and support.

Until the exhaustion set in and the sound of voices around me again began to feel too loud, too much.

Everyone left, including Lou and Shea who had to pick up our exiled dogs. The house grew quiet.

The tears came again. And this time it felt like GRIEF. Real grief. The hardest, hurtingest, wracking sorts of sobs, collapsed on the kitchen floor.

Yesterday, I took a long walk in the woods with Denver dog on another perfect, beautiful day, and I imagined having Harper with me, carried in the Bjorn, like I used to do with Shea, on the very same path through the woods with the dogs. I could almost feel her soft head and smell her and hear her breathing.

It was exactly the kind of perfect day, just like today, that I so wanted to share with Harper before she died.

But I couldn't.I will never feel her soft head again, never carry her on that path through the woods.

Because the thing is, no matter how perfect the day, no matter how perfect and beautiful and sweet the memorial. No matter how much we try to focus on the positive. No matter how much it feels like planning a wedding, there's no happy ending at the end of the day.

It doesn't bring her back. It doesn't really make it better.

Today we gave Harper her Hebrew name - Kinnor Miriam - and the gathering at our house felt very much like what we would have had for a naming ceremony. But the celebration is over, and I have no baby.

I still feel the hug of those who came, but would rather feel the weight of a baby in my arms.

Hard to imagine a return to "normal" life when I still can't get through a day without crying.

Harper's memorial

KERI'A: The pattern of life has been torn apart.  What was to be whole, is now broken.  Tearing a ribbon, a symbol for the fabric of life, expresses the tear in our heart.  In moments of sadness, loss, and despair, the gift of tears and the freedom to weep can be a blessing – an experience of the awesome and awful truth of life and death. 

Barukh Atah Adonay, Eloheynu Melekh HaOlam, Dayan Ha-Emet

Opening

Healer of the brokenhearted:

We mourn today; we grieve with You.

For the dream that could have been

For the glory of new life … that vanished like a breath.

We mourn that a sweet baby, Harper Wolinetz,

Will never knew the joy of simple life

Will not grow to fullness in the love of her parents Carrie and Lou

Or  her big brother Shea, her grandparents, aunts and uncles, and others.

Before she was truly here, she was gone.

How brief this brush with life,

How painfully short a stay.

If I were here, what would I say?

Lorraine Lehman-Jones

Yes it is true that I never got to see all that this world holds.
The flowers, the trees, grass - or a bright sunny day.
Not even the smiling faces of my loving family.
But in my heart I have seen all of these things, even in my short time.

It is also true that I never got to feel the many things that you take for granted ...
The heat on my face on a hot summer's day,
Finger paints and crayons I will never hold in my hands.
But I did feel the loving arms of my Mommy and Daddy cradling me gently.

I never got to hear all the sounds that make most hearts sing,
The laughter of a loved one, or the sweet song of a bird,
Songs on the radio and the words "I love you" are to me a mystery.
But the soft touch of my Mommy and Daddy's hands shouts to me all of this and more.

I will never know the joy of running through a field of flowers,
Never will I roll down the side of a hill, too dizzy to stand.
Hide and seek, tag and catching ball I will have missed,
But in my mind I will do all of these things and more.

You all may see it as me missing out on all these things by leaving you so soon,
But where I am going I will do, see and hear everything you do and more.
I will only think of good things - for in my short existence that is all I have known.

So don't cry for me, I will do all that you have wished for me and more. 

Too Soon   (by Mary Yarnall)

This was a life that had hardly begun
No time to find your place in the Sun
No time to do all you could have done
But we loved you enough for a lifetime

No time to enjoy the world and it's wealth
No time to take life down off the shelf
No time to sing the songs of yourself
Though you had enough love for a lifetime

Those who live long endure sadness and tears
But you'll never suffer the sorrowing years
No betrayal, no anger, no hatred, no fears
Just love - Only love - In your lifetime.

She is gone - David Harkins

You can shed tears that she is gone
Or you can smile because she has lived

You can close your eyes and pray she will come back
Or you can open your eyes and see all that she has left

Your heart can be empty because you can't see her
Or you can be full of the love that you shared

You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday

You can remember her and only that she is gone
Or you can cherish her memory and let it live on

You can cry and close your mind, be empty and turn your back
Or you can do what she would want: smile, open your eyes, love and go on.

NAMING PRAYER

Comforter of All, be present for us in this moment of loss.  Stand with us as we stand with Carrie and Lou, who when looking forward to the miracle of life, have encountered the darkness of death. 

Whatever life is, life is unpredictable.  Our blessings and troubles often come without warning, and appear without a reason.  But life has the power to transcend loss and love contains the strength to overcome death. 

We pray that the life force of Harper, who could not survive in this world, be returned to the treasury of life.  May her soul journey to realms beyond imagining, and yet remain in the hearts of those who will always be her family. 

May her name be forever remembered among our people as:

Kinnor Miriam bat Shira v’Eliezer.

Barukh Atah Adonay, zokher y’tzurav l’chayim b’rakhamim.

To Harper, with love from Mommy & Daddy:

L - Usually, eulogies involve sharing memories about the person who lived and our experiences with them. But it’s hard to do that when you are remembering a baby who only lived for 17 days and who most of you never met.

C - We can tell you about how Harper liked to hold our hands, how she sounded like a dog’s squeaky toy when was content and like a bird when she was crying, or how exciting it was for us on those rare moments she opened her eyes.  We can tell you how we began calling her “bean” in utero – not the most original baking baby name - and never stopped because the nickname suited our tiny little one. Or how glad we are that she got to meet her grandparents and so many other friends and family in her short time on earth, or how grateful we are that we were holding her and loving her at the end.

L - But what we’re really left with, more than two and a half week’s worth of memories, are the lessons Harper has taught us. So many people have reached out to us to tell us how our little Harper bean has touched their own lives. And it’s important to us that something positive comes out of Harper’s life and her death.  We began to realize that on the day after her birth, when we were still reeling from her diagnosis.

C - We wanted to share with you some of the positives our Harper bean gave us and then invite you to share her impact on any of you.

·       L --Harper brought us closer together.  We have had so many honest, raw conversations in the past three weeks and realized how truly in sync we are about what we want for our family, what we truly believe in, and what’s important to us. In a 17 day whirlwind, we went from imagining our daughter’s wedding to confusion about her gender to thinking about raising a child with major disabilities to realizing we were destined to lose her very soon.  From planning to care for her to dealing with her death, we have been amazed at how we thought and came to similar ideas and wishes.  And how we have been able to support each other through every tearful moment.

·       C -- Harper has also brought our families closer together. We’ve heard from nearly every living relative we have. Our parents have talked more in the past weeks than they had in years. Our sisters and Uncle Mark have provided childcare, shoulders to cry on, and perfect ridiculous presents when we needed them. And this has driven home how important family is to us – we hope there will be more children in our family’s future.

·       L- Harper has restored our faith in the kindness of humanity.  From the NICU staff, the hospice staff, Shea’s daycare teachers, NIH SLOS researchers, guy working at Cosi who went next door to get ingredients from Starbucks when Carrie really needed a Frappuccino, and everyone who has readily handed us a tissue when we needed it – we have encountered so many people who have been there to help us every step of the way and have themselves been touched by our little bean.

·       C- Harper has reminded us of how fortunate we are in our friends . So many of you have reached out – some with comforting words or hugs, some with assistance, some with cookies and food. Some we hadn’t talked to since high school. We heard stories of love and loss that we never knew. We were reassured time and again that we would get through this and that our friends would be with us all the way.

·       L -- Harper has taught us to be more patient and kind. I find I get less pissed off when someone cuts me off on the beltway or inconveniences me. Maybe they are going through something in their lives. Maybe they’re just a jerk. But I have to give the benefit of the doubt. I’m nicer to strangers.  A kind word can make a day.

·       C -- Harper has opened our eyes to a world of disability and needs and community. Before April 18^th, we had never heard of SLOS, nor did we much experience or exposure to dealing with a child with serious special needs. From the very first day, the SLOS family reached out to us with support, kind words, useful information, and virtual hugs. They never let us feel alone in Harper’s diagnosis and the smiling faces of their children made us smile during some very dark times. As one SLOS parent said very early on, “You are part of our family now and we are here for you.”

·       L -Harper has showed us what really helps in times of crisis. When our friends and family have been dealing with difficulties, we joined the masses in offering sympathy and support, but have hesitated to take action for fear of intruding. Those who stopped at our house unannounced, sent food unrequested, showed up to plant our garden or clean our house, called to say they were thinking of us:  thank you. Every day was overwhelming and we had no idea what we needed in any given minute or hour – your actions meant the world to us when we were paralyzed with our own grief. In the years to come, we are now better prepared to help our own loved ones get through times of grief.

·       L -- Harper has reminded me to take care of myself: Like many, I’ve known for awhile that I need to take better care of my physical and, especially, mental health. Going to a counseling session which I could never quite find time to do was a first step, and I intend to see it through.

·       C- Harper has made us appreciate her big brother, Shea. We have always agreed (and I think this overcomes even parental bias) that Shea is a great kid. He’s happy. He’s kind. He’s easygoing. But the past weeks would have been 100x harder without him. To give us big hugs. To force us to roll on the floor of our new basement laughing. To tell us how he would hold Harper’s hand until she was better. To ask mommy to stop crying. We always took his great health for granted, but knowing there was a 25% chance SLOS could have happened to him makes us more thankful each day for our Boo who we love.

 L - We never imagined the first social event about Harper would be her memorial service. But we are typical proud parents in boasting about our little girl’s extraordinary accomplishments. In a mere 17 days, she has given us a lifetime of lessons on love and loss. 

C - As we both celebrate and mourn Harper, we wanted to give any of you who wished the opportunity to share if our little girl impacted your life, too, in a meaningful way. 

El Malei Rachamim – Hebrew/English text

El malei rachamim           God filled with mercy

sho-khein bam'romim  who dwells in heavens’ heights

ham-tzei m'nuhah n'khonah tahat kanfei ha-sh'khinah,

bring to perfect rest under the shelter of your Presence,

b'ma-alot k'doshim u't'horim / amid the ranks of the holy and the pure

k'zohar ha’rakiya maz-hirim / who still shine like the radiance of the sky,

et nishmat Kinnor Miriam bat Shira v’Eliezer

the soul of Harper daughter of Carrie and Lou

she-halkha l'olamah,  / which begins its journeys in other worlds.

b'gan Eden t'hei m'nuhatah.   //

Ana, ba-al ha-rahamim,    Please, God, source of mercy

hassti-reha b'seiter k'nafekha l’olamim, // shelter her in the shadow of your love forever

u-tzror bi-tzror ha-hayim et nishmatah, //  and bind among the living her precious soul

Adonai hu nahalatah,  v'tanu-ach b'shalom al mishkavah,   //

and may she find peace in her resting place. 

v'nomar amen.      And let us say:  Amen.

MOURNER’S KADDISH

Yit-ga-dal v'yit-ka-dash sh'mei ra-ba.  B'al-ma di-v'ra chi-r'u-tei, v'yam-lich mal-chu-tei, b'cha-yei-chon u-v'yo-mei-chon u-v'cha-yei de-chol beit Yis-ra-eil, ba-a-ga-la u-vi-z'man ka-riv, v'im-ru a-men.

Y'hei sh'mei ra-ba m'vo-rach l'a-lam u-l'al-mei al-ma-ya.

Yit-ba-rach v'yish-ta-bach, v'yit-pa-ar v'yit-ro-mam v'yit-na-sei.  V'yit-ha-dar v'yit-a-leh v'yit-ha-lal sh'mei d'ku-d'sha -- b'rich hu.  L'ei-la min kol bir-cha-ta v'shi-ra-ta, tush-b'cha-ta v'ne-che-ma-ta, da-a-mi-ran b'al-ma, v'im-ru a-men.  Y'hei shla-ma ra-ba min sh'ma-ya v'cha-yim a-lei-nu v'al kol Yis-ra-eil, v'im-ru a-men.

O-seh sha-lom bim-ro-mav, hu ya-a-seh sha-lom, a-lei-nu v'al kol Yis-ra-eil, v'im-ru a-men.

Tears in Heaven - Eric Clapton

Would you know my name 
If I saw you in heaven? 
Would it be the same 
If I saw you in heaven? 
I must be strong and carry on 
'Cause I know I don't belong here in heaven 

Would you hold my hand 
If I saw you in heaven? 
Would you help me stand 
If I saw you in heaven? 
I'll find my way through night and day 
'Cause I know I just can't stay here in heaven 

Time can bring you down, time can bend your knees 
Time can break your heart, have you begging please, begging please 

Beyond the door there's peace I'm sure 
And I know there'll be no more tears in heaven 

Would you know my name 
If I saw you in heaven? 
Would you feel the same 
If I saw you in heaven? 
I must be strong and carry on 
Cause I know I don't belong here in heaven