welcome

Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged, understood.

Many thanks to artist Stephanie Sicore for allowing us to feature her little bird in our banner.

subscribe
categories
search
Powered by Squarespace
Tuesday
Sep012015

from the archives: after the transformation

Reading through the archives, listening to the chorus of cicadas outside, I came across this piece by Gal, first published on August 23, 2009. The timing seemed right to bring it to the light again. These are only excerpts. You can read the full post here.

Oh, ppphhhhhh… 

What do I do now?

She’s been gone longer than she was here, even counting the time she was inside me.

I’ve passed all of the first anniversaries: her ultrasound, the day she was born, the day she died on both the Jewish and Gregorian calendars.

We’ve anticipated her arrival.

Hoped deeply.

Said hello, welcomed our second child to the big world.

Loved unconditionally.

Taken her outside to breathe fresh real air.

Said goodbye.

Buried her fragile little body in a tiny coffin in the ground.

Her box of memories is full, her photo album is made. Her special soft things in jars, still smelling a little bit like her. Everything put away in the trunk that sits next to me in the sunroom, keeping me company.

Her quilt is coming along, something I am not in a hurry to finish… When I work on it, I feel close to her.

I still haven’t framed and hung her photos, but I will… soon.

Her headstone has been made, set and unveiled. Flowers planted with her placenta. Her DNA and ours stored at the hospital for research. Her birth and death certificate are in a safe place with other family documents, confirming that she really did exist, always a part of our family.

We’ve moved away and settled into our new home across the country.

Our new chapter has begun.

Now what?

*****

Today I watched as two cicadas completely left their exoskeletons and began a new chapter in their new skins, so bright green they were almost turquoise. They hung there from the branches of a tree, clinging still to their old shells, transparent wings spread, contemplating new destinations, new purpose.

It was stunning… I’ve never seen anything like it. For three weeks now I’ve been listening to them singing their songs outside, surrounding me with constant tropical melodies. I’ve just never seen a cicada before, not even in a photo.

Everything changes, nothing stays the same.

Impermanence... I see it when I look in the mirror. I look different than I did last summer. I look different than I did two summers ago. I think I look different than I did a few months ago. I’ve reluctantly left my exoskeleton, sometimes hesitating to leave it completely behind. Longing for it, for simpler times.

My old shell consists of all the mes I’ve left behind, said goodbye to, willingly or not.

It’s this next place I’m not so sure about. This after the transformation place. I can so easily tell you how changed I am from the person I was before I knew Tikva. I can describe in vivid detail how she transformed me, and for the better. But I’m not exactly sure what that means for me now… now that I’ve been transformed by knowing, loving and losing my child. Now that I’ve undergone a change I never in a million years would have chosen. Now that I’ve gotten kind of used to this new person that I am.

* * * * *

It’s almost the new year on the Jewish calendar. The biggest time of the year. This is supposed to be a time of reflection, of going inwards, of making amends, making peace. I always find this time tumultuous inside, unsettling, unsettled. I guess that’s the point. I don’t know if I’m ready for a big time right now. I’m feeling especially un-Jewish right now, which is ironic as the wife of a future rabbi. Really, I just feel like climbing under the covers and not coming out until October. Until the new year, a new season.

Last year at High Holy Day services, less than two months after Tikva died, I alternated between sitting next to Dave in the sanctuary, crying, and running outside to cry alone. I resented everyone dancing in the aisles all around me. I felt no joy, no peace, no serenity. I felt isolated, empty, lost. Dave wrote angry messages to God in his journal. I did not fast on Yom Kippur. Dave and I got into a fight about something, I can’t even remember what. Afterwards I went with a friend to a candlelight vigil for babies who had died. It was one of the saddest days of those first few months after losing my Baby Girl.

I don’t feel especially compelled to fast this year either. I don’t feel especially inspired to do much that is Jewish, to be honest. Keeping kosher – in the limited way we’ve been doing so for several years – feels kind of trivial after what I’ve lived the past almost two years. That is not how I connect to something bigger, by eating my meat and my dairy separately… by fasting on Yom Kippur.

* * * * *

There is a new layer of sadness churning deeply in me right now, a layer I’m not quite ready to shed. A space I just need to exist in for a while. I’m not entirely sure what it’s all about, but I do know that it’s less tidy, more raw than I’ve felt in many months.

It’s not the part of me that wondered how I would ever survive losing my child, terrified at the thought of forever having to hold that experience. I’ve survived, relatively intact. But I’m not settled. In fact, I’m feeling rather unsettled right now. In a new kind of limbo, an in between place.

Now what?

Now life goes on. Now life continues.

That’s it? It just continues? Just goes on, business as usual, except that I’m completely transformed in the middle of a world that hasn’t really changed much at all?

Yup.

How come I have to adjust to the same old world around me, and no one has to adjust to me?

Because you’re not the majority.

I’m not? I know and know of so many parents who have lost babies, our numbers grow every day, and we’re still just a minority? But this is all I know. What am I supposed to do with the transformation I just went through? With this new self I am sort of used to and still getting acquainted with?

* * * * *

Tikva? Are you there? Are you still close? Is that you in the giant yellow and black butterfly I saw yesterday? In the turquoise under the transparent wings of the cicada? In the tiny bird eating an Oreo cookie outside the ice cream store yesterday?

What do I do now… still without you?

I will let myself cry for as long as I need. There are no rules around how long is enough before being done with the sorrow. You are never really done, are you? Here in this place, we know better than to create those kinds of boundaries. Here we feel what we need, when we need, how we need to.

I miss you, Tikva. I miss you differently now. But oh how I miss you still, my Tiny Love.

 

How do you feel you've transformed? What feels new? What have you gotten used to?

Wednesday
Aug262015

acute

This past winter, the winter that set the record for snow days and pretty much shut down our commuter rail for a good long while, I was in a car accident. On my way to work sitting at a red light, my car was hit from behind. A minor accident, one out of I won’t even hazard a guess how many others that day. After a major snowstorm things like that just happen.

I didn’t feel great after, and only worse throughout the day. So by the time I saw the ER doc I wasn’t even that surprised by the verdict—concussion and whiplash. Rest and see your regular doctor for follow up. I did, and took the anti-inflamatories she prescribed to try to reason with the injury. I started PT and learned to turn my body rather than my neck to look over my shoulder. I learned to grade at a podium rather than at a flat surface whenever I could. I learned to angle my laptop to give my neck as much of a break as I could. And still, by the time April was half over I was half out of my mind. The pain itself, the aching and burning and squeezing of the scalp, the tenderness at the base, it was bad enough. But what made it truly unbearable, what made it maddening, was that the pain was constant and unrelenting. From the moment I sat up in bed to the moment I collapsed back into it, the pain was there.

My doctor didn’t know when it would get better. My PT kept talking about how incremental and jagged progress can sometimes be with this type of injury. I couldn’t tolerate even the simplest of exercises so all she could do for me was manual therapy. The one pain-free afternoon-- about four hours worth,-- that followed one of those sessions felt like a gift, and then a tease because the rest of that week was well and truly worse.

My doctor eventually sent me to a neurosurgeon who had a diagnosis, though not treatment for me—for treatment I had to go to yet another doctor. Pain clinic. Fucking A—I was forty years old and had a pain doctor. The pain doctor is knowledgeable and genuinely nice but not saccharine. I appreciate all three of those bits that every time I see him.  He confirmed the diagnosis and outlined the treatment, with all of the unknowns clearly marked. Which is to say he was fairly clear that it may or may not work.

He said another thing then, and he said it again at a follow up, and my PT had said that same thing many a time before, but it didn’t sink until the pain doc said it for the second time—he said that with this type of an injury, where I was, months out, even six months out, was still considered an acute phase. Acute, people! As in sharp or early. Sharp and early. Not the message I wanted to hear or appreciate—no wonder it took much repetition for it to sink in.

There was another time in my life when I resisted hearing that my pain was still sharp and early. Six months from A’s death someone commented on my blog then that it was so new still, and I did a double take—it had felt like an eternity. The aching and burning and squeezing of the soul, the tenderness of love I could do nothing with or about except write it out, all of it adding up to the unrelenting sadness… It took more time, months and years more, to recognize that my commenter was right, to admit that six months was awfully early, awfully acute.

Joe Biden, who’s had more than his share of burials that shouldn’t have been, in speaking to gold star families promised that there will come a day when the thought of their loved ones would bring a smile to their lips before it would bring a tear to their eyes. In those early months I wouldn’t have even known how to imagine a thing like that for a beautiful boy who never got to take a breath of air. It’s still hard, but sometimes these days it does happen. It happens most often when my younger son talks about his brother, about how we love him because you don’t stop loving someone just because they die, or about how he wishes he got to know his brother. Damn, kid, don’t we all.

A’s eighth birthday was just days before the accident. And for some reason, eight was hard. Frankly, it wrung me out. It started in on me a good two months out and man, did it take me to school-- in a creative and unusual move, eight showed me what the expression “debilitating anxiety” is all about. I could’ve lived my whole life without knowing that, thankyouverymuch. One of the things we do for A’s birthday is spell out his name and number in oversized gingerbread cookies. And let me tell you—you can be a nerd all your life, you can know that an 8 sideways is the sign for infinity, you can even know and love excellent nerdy jokes that rely on that fact, and yet neither the knowledge nor the jokes will protect you from how visceral and conspicuous that silly infinity-shaped cookie makes the forever.

The treatment for my neck injury is finally getting somewhere—after recent repeat medical procedure, the pain level is appreciably less and I am finally able to do actual exercises in PT. I am starting to believe that I will actually get better, that I may even recover rather than enter the chronic phase of this thing.  

On the other hand, the loving and missing of my son will never get “better.” It’s easier to live with these days, chronic, not acute. Integrated, part of me, part of the fabric of my life and my family. As eight demonstrated, there are flareups. Which is ok. This is not a condition from which I ever hoped to “recover.” Because after all, we don’t stop loving someone just because they die.

 

 

What stage are you in? How have you perceived time on this journey so far? Have you had your perception of where you are or have been affected by time or distance in time?  

Monday
Aug242015

new forum moderator

Please join me in welcoming Jo-Anne as Glow's new forum moderator. Many of you already know Jo-Anne from her loving, generous presence in the forums, and from her blog This Little Light of Mine, where she writes in memory of her daughter, Zia.

In Jo-Anne's own words:

Two years ago, I felt truly lost. Support for "babyloss" parents in my city and country as a whole was minimal, it still is. I listened to people tell me how I would get over "this" and have many more children, this just days, even hours, after we found out Zia had died and I felt ready to just give up, I kept shutting further down because there was truly no-one around me who seemed to understand the depth of my loss and that it was not as simple as everyone thought it was.
 
And then I came across a story much like my own one night while Google searching "stillbirth support". There was a link to the Glow site and  I started reading so many stories, some much like mine, others different, all heartbreaking. I even found the courage to share my own. People so far across the world helped me find an outlet for my hidden grief, I could say how I felt, what was in my heart and even gain perspective. Other times, there was simply someone there to read/listen to my thoughts. I was later able to open up with some people close to me and accept their kindness, I was able to let go of some people who no longer served any purpose.
  
Glow encouraged me to keep writing and in doing so, I got to know myself, that my relationship with my daughter didn't have to end, that it continues, even though she's gone. I continue to tell my story, it changes and it grows. I was never discouraged from expressing  my thoughts, from loving my child, from remembering, from living. So this is my way of giving some of that back.
We are so glad to have Jo-Anne at here in this cabin with us. Her light--and her daughter's light--is so bright, we know she will continue to ensure the forums here are welcoming, comforting, supportive places for all who wander through this wood.

 

 

Monday
Aug172015

there are no words

We are honored today to have a guest post from Robyn, Owen's mummy, of The Heart Sees Clearly. We'll let Robyn introduce herself:

Mummy to Owen Benjamin, a very loved and cherished little boy who has brought so much colour into our lives. After a healthy pregnancy, Owen arrived on October 30th 2014, just hours after his due date. Our little guy suffered a traumatic birth, leaving our hearts confused, and his beautiful body too sick to physically live in this world. Our little family spent 5 beautiful days together making memories to cherish. In the loving embrace of his parents, soothed by his mother’s heartbeat, the wind in the trees, the fresh Vancouver rain, and many kisses, Owen’s spirit was set free under a big, strong oak tree. We now spend our days learning how to parent our son in ways we never imagined, honouring his memory and keeping his spirit alive in everything that we do. All for our little Owen Benjamin, and our little family of three.

 

Looking back, I am not sure how we were able say goodbye. How we were able to decide when we had enough cuddles, enough kisses, enough time.  How we were physically able to walk away from the little body, our son’s beautiful little body, on that rainy day in November.

Strength is a trait that gets thrown around lot with the bereaved. I am not sure what it means, or who it is meant to comfort. However, the sentiment is well-meaning and appreciated. It implies that someone cares but simply has not learned the language of the bereaved. I wouldn’t want anyone else to truly know how we are feeling, or how the textbook definition of strength only vaguely skims the surface. To know that in this language, there are no words.

I was not strong the other day as I walked past some neighbourhood mothers with their strollers. The smile on my face and forced “hey” did not accurately portray my broken spirit, nor my anger and sadness that I was on my way to a counselling session instead of on the walk with them. I was not strong as the tears pierced my cheeks the rest of the way.

I was not strong as I wept while I read the birth announcement from one of my colleagues, announcing the safe arrival of their daughter. Jealousy is not strength. However, I was strong when I decided not to reply, when I decided that a passive-aggressive email would not set a good example for my son.

I was not strong as I fell to pieces in the nursery. As I sat in the chair we had so carefully, and proudly, chosen fabric for a few months before Owen’s arrival. As I looked at this space we poured so much of our love into to make sure everything was just right. I was not strong as the only sounds were of a wounded heart.

I am not strong in the fleeting moments when I wonder why we bother to carry on, yet knowing in my heart we have to in order to honour our son.

I fear that people will see me and think that I am strong. That in those moments you courageously speak with me, walk past me, or sit with me, you see my ability to string words together as strength. That I am somehow giving off the wrong impression. That I do not miss my son with every ounce of my being.

We do have moments where we feel elements of textbook strength. We can smile, laugh even. However, when you are in the throes of grief, you do not feel strong. I am there sometimes, but I am not there yet. I do not suspect I will ever be there all of the time, either. Strength is subjective.

I present to you my new definition of strength, as it applies to my grieving heart:

The ability to carry on one minute and allow yourself to fall apart the next. The willingness to make yourself vulnerable, to be honest with your emotions, to cry and scream when you need to. The capacity to feel joy without guilt. The selfless act of taking on the suffering so your child does not have to. The power to let go, when all you want to do is hold on, when all you want is one more cuddle. To live, knowing your child will always be with you in your heart.

And for those who are along this journey with us as we navigate the unknown:

The courage to be with our grieving hearts. The ability to sit in awkward silence. The willingness to let the tears fall alongside our own. 

 

Have people told you to "be strong"? Have they said you ARE strong? How do you react? What is strength to you?

Monday
Aug032015

no god

She is nine months pregnant, she tells me.

After I ask.

After a friend sends us a link to a breastfeeding article. I see her name on the message and know.

I am hurt.

Coward, I accuse. But I know that’s not it. Silence leads to silence and we haven’t spoken since just after Joseph died. According to me. It was when M was born, says she.

We have had these pauses before, but none as long as this.  I rub my fingertips together and feel that chalky residue, the contamination of Death. It is this, I guess. I am the face of Death. She is pregnant. No one wants those two to mix.

She says she’s had a difficult pregnancy. They’re checking her bile levels and she’s itchy. They might induce tomorrow.

My blood starts to race. My breath comes faster. My stomach, a familiar knot. I want to throw down my phone, unread her email, but my eyes are pulled on.

But if not, we'll just wait until the baby decides it's time to come. Trying to trust God and know that all will be well. 

I see red. Anger surges through my veins and I thrust my phone away from me, turning off the screen.  I can’t, I can’t, I can’t, I can’t, I can’t, I can’t, I can’t

 

hear this shit

fucking believe it

stop worrying

talk to her

call her

tell her to run to the hospital now

keep her baby safe

I can’t I can’t I can’t

 

even begin to explain to her there’s no god who can assure it will all fucking be well.

 

What do you say to your friends who are pregnant?