Tag Archives: Death

Adorned In Grief

What was odd is that it wasn’t chilly.  It was a February morning in Seattle and I remember not being cold.  All the more odd because I’m always cold.  Always.  I can’t remember if it was sunny, but I know it wasn’t raining.  Again, odd for Seattle on a February morning.  February 12, 2012, to be exact.

I was wearing a black cotton spaghetti strap, v-neck dress with a satin lining that flowed over me knees.  I’m not sure where I got it, because it was already in my closet and I hadn’t worn it often.  It was a summer dress.  I wore a black shawl over my shoulders and black patent leather heels.  No pantyhose.  Does convention still call for them?  I was young enough not to care.  I put on a black 1920s style cloche hat to hide my face.  I had gotten it on vacation a couple of years earlier.  I didn’t want to look at anyone and I didn’t want them looking at me.  I wanted to shrink into that hat completely.

I can’t remember most of it, the funeral.  I do remember someone telling me it was beautiful.  I wanted to punch them in the face.  I remember someone else telling my they had never seen a coffin so small.  Again, mental face punch.  Then, someone told me I was beautiful.  Actually several people did.  But someone told me it was the most beautiful I had ever looked.  Really?  At my daughter’s funeral?  Jerk. 

I don’t even remember who it was.  I just remember thinking that maybe I was little more beautiful at my senior prom…or my wedding…or basically any other day than this.

They just wanted to be nice.  I know they did.  I don’t blame them.  I don’t even count it as ignorant or outplaced.  I was simply being swallowed alive in that moment by the death and subsequent burial of my daughter.  All-in-all, I think I’ve held it together pretty well.

There were so many people there.  I felt their eyes all over me and it burned.  I didn’t look around.  I will never know who actually was there, or how many people in total, but I know the cemetery was full.

Our preacher said some words.  I think my brother lead a prayer.  I said nothing.  I watched as they lowered my daughter’s body into the hole previously dug for her.  I wasn’t sure what to do.  Was that it?  Was it over?  What did I do now?  Just leave?  How?  How could I just go?  Once I left, that was it.  Never a reason to return.  The last that remained of her physical being was gone from me forever.  How could it be?  How, after the years of caring for her day in and out, providing for her every need twenty-four hours a day, could I just go?

What mother leaves her baby cold in the ground and just walks away?

One face stood out to me.  A friend, who was a light in the darkness of my day.  She didn’t speak.  She simply walked up to me and her searching eyes said everything there were no words for as she pressed her lips together and stared into my soul.  I was grateful for her understanding, and though our eyes met, I was silent in my reply.

I don’t have the dress anymore.  I don’t know where it went.  Did I give it away to Goodwill?  I think I did, but I don’t remember doing so.  I knew I would never wear it again.  The shoes and shawl are both gone.  I will never wear the hat again, either, but it I still have.  I see it in the back of my closet, a grim reminder of the one and only time it adorned my head.  I don’t take it out.  Sometimes it topples over when I’m digging for a pair of shorts or an old purse.  And I remember.

Headstone

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Memories of a Lifelong Crusade

Memories tend to spring up in unexpected places.

Some recent remodeling lead to our reorganization of the bookshelf in our downstairs family room.  As we were sorting through our treasures, deciding what to keep and what we could bring ourselves to part with (as we tend to be book hoarders, and as such there were overflowing piles stacked against the shelf along the floor), I came across an anthology from a local library contest I had entered in 2011.  In it was the poem I had written specifically for the contest about Miss Elliott.

At the time I wrote this poem Miss Elliott was still alive.  Our lives were consumed with her care, in the best possible way.  I railed against the pitying looks and downward glances I caught in the eyes of others as we navigated our days.  My drive and desire was to share with the world how wonderfully beautiful, how extremely important her tiny life was. And to rid it of its feelings of sorrow for us.  It was the same drive and desire that would lead me to write my book about her life after she had passed. Purchase your copy of Three Short Years here.

Reading the words I had so carefully crafted brought these feelings flooding back.  It was always clear to me that I was to be her voice.  Although I still strive to educate others about Tay-Sachs disease and share the story of her life, my platform has changed dramatically from when she was alive as I now carry on in her memory rather than for her honor.

One of the key pieces of information I was determined to convey to the world was that her life may have been different from most, from what was expected, but it was not in any way bad.  It was not sad.  It was full of unconditional love.  As a parent, I feel that many of the things we hope for our children, which the world will inevitably rob them of, were freely granted to Miss Elliott.  She was never to know rejection, disappointment, abuse, fear, or unrequited love.  She never toiled through pain or loss.  She lived a life of nothing but love, acceptance, and care, and she died with a pure soul, having never even unintentionally harmed or disappointed another being.

SketchOriginal sketch artwork of a Soulumination photo of Miss Elliott.

She was different, but she was perfect.

And I’ve always wanted the world to know it:

I see her existence on a parallel plain.
I watch as she sits alone in her silence.

When I look into her eyes and I can see forever,
yet out of hers she cannot see at all.

I carry her from place to place and know I am her legs,
for try as she might, hers will not propel her body.

Bound by dependence and no free will,
I am her voice as she cannot speak.

While her failing shell deteriorates
her soul shines brighter and brighter.

Its light, like the sun, escaping its cage
in a feeble attempt to bar it in.

By our paltry standards she may be physically broken,
but her spirit grows stronger each day.

Tired and weak she carried on.
As change comes to her, she also is changing our lives.

Always giving more than she receives,
she asks for nothing in return.

What can you learn from a dying child?
Enough to change the world.

When There Were Two

Sisters

“Because we have ‘only’ children”, she said. I can’t remember my response now. I’m sure it was something pleasant and agreeable, but in my head I was shouting that I don’t have an ‘only’ child. I have two children. And yet, the fact remains that my not-only child, is still, in many ways forced to grow up like one. After all, she is the only child currently living in our household. But in her heart, she knows she has a sister.

What a strange way to go through childhood; knowing you have a sibling, even remembering them, but not sharing in the sibling life together. Is it what children who find out they have half siblings somewhere, or come to know of another sibling given away for adoption before they were born feel? I don’t know. All I can know is that in our house, our oldest daughter, may be our only living daughter, but she’s not our only daughter.

Even as the mother of two girls, I’ll never know what it’s like to parent them together, in the conventional sense, anyway. We were blessed to have three years and four months where our two girls shared their early lives together, but even then we didn’t have a typical lifestyle. There was no fighting, no crying over unshared toys, no complaining about the other when one didn’t get her way. And while I longed for the normalcy of that life, I still cherished the one I had. It may not have been ‘normal’ at all, but to our oldest daughter, it was. It was all she had ever known.

There may not have been moments of playing dolls, or blowing bubbles together, but there was holding hands, and reading stories, and so, so much more that made our children’s lives wonderful. Even in our youngest daughter’s death, a sense of joy and peace was present in my ever-so-resilient older daughter. A gentle understanding that our sadness was all for us, and not for her younger sister who was now free from the earthly constraints of her immobile body and mind.

I see a lifetime’s worth of compassion and tenderness bestowed on her. I see tolerance, and understanding. I see acceptance, and most of all, I see an immense amount of love.

When I hear or read of ‘typical’ mothers complaining over the blessings in their lives I become ruefully angry with them. I want to shake them and tell them to stop. To get a grip. To woman up, so-to-peak. This is not to say we don’t all complain over ridiculous ‘first world problems’ in our society and culture from time to time, and yes, we all ‘vent’ once in a while too, but when it comes to complaining about your very children for being just that – children, especially the ones you have planned for, prayed, for, wanted more than anything who are happy and healthy my acceptance and tolerance level dips dramatically. How dare you.

Narratives that sound like, ‘no sleep, so tired, two kids at once, changing diapers, spit-up food, just need a break, etc…’ frustrate me immensely.

What I would have given to have those ‘problems’. Mine sounded more like, ‘seizures, choking, inability to chew or swallow, medication administration, can’t sit or lift head, can see, can’t think, PT, OT, neurology appointments, etc.’, and the part that really gets to me the most is never did I complain about my child’s life. I would beg for years of sleepless nights just to have ten more seconds to see her and hold her in my arms again.

This is my hindrance. My own bias, and personal issue. I get that. And would I have been one of the women complaining about my ordinary everyday life had I not had the experience of living with a severely handicapped and terminally ill child? I very well may have. It’s just that now I know better. And all I can do is be thankful that in the end those other mothers have no idea. Their children will grow out of sleepless nights and diapers. They will become little people who do the usual little people things. They will fight with their siblings, and go to each other’s ballet recitals and soccer games. And here in our life we and our not ‘only’ daughter will carry on, as she plays alone, not sharing toys or splitting Christmas gifts, the unbroken focus of our attention, just the three of us, holding the memory of the time when there were two, when we were four.

A Note on (Bereaved) Mother’s Day

Miss Elliott and Skylar, to whom I’ll always be, “Mom”.
Sisters

I’ve only recently learned of International Bereaved Mother’s Day, and I have to say that my first thought was that I was not impressed.  After all, to be a bereaved mother you must be a mother first.  The one denotes the other.  So secondly, (here in the USA at least ) can’t I just celebrate my motherhood on the same day as everyone else?  What I need is for my child, my daughter to be remembered and celebrated everyday, not on some pronounced day of solemn reflection that further singles me out from the rest of the mothers.

If you are not familiar with the history of Mother’s Day, you might be surprised to know that it was not invented by the greeting card industry to sell fifty million five-dollar one-liners once a year.  It was actually invented by Anna Jarvis in 1908 to celebrate her own mother, Ann who though she gave birth to somewhere around twelve children, only four of them lived into adulthood.  So the purpose and focus of this day was actually created to honor Anna’s mother due to her bereavements in motherhood.

I should point out that I do understand that healing aspect of this International Bereaved Mother’s Day of being given one more outlet to be able to freely acknowledge your deceased child.  As the mother of a deceased child, society can make you feel that it’s not socially acceptable for you to talk openly about your child the way your friends and relatives talk about theirs.  That it’s actually taboo for you to wish to mention your own child in public merely because he or she has died.  But I personally still felt that I didn’t need any more segregation from myself and mothers of living children.  I felt that I would celebrate my motherhood along with everyone else, on Mother’s Day, as it was originally intended

Which is why, as I dug further into my investigation of International Bereaved Mother’s Day I was happy, if shocked to find that it is actually a temporary movement intended to refocus the true meaning of the original Mother’s Day, the acknowledgement of the bereaved motherAs stated on the official website for International Bereaved Mother’s Day; “If you have experienced the death of one or more of your children, struggle to conceive a child or are unable to fall pregnant at all, this day can often bring up feelings of isolation, unworthiness, pain and sadness. Much of society has forgotten the true meaning of Mother’s Day and fails to support and recognize all true mothers.”

No matter the tangibility of her child, a mother is one of heart and mind first, before she is ever one of physical presence.  A mother’s journey begins long before she gives birth, and it doesn’t end when her child dies.  If you know a woman who is a bereaved mother, please take a moment to be a friend and neighbor to this woman.  Open your heart to her.  Acknowledge the child in her life that you cannot see every day.  Speak their name.  Tell her you remember them, or ask to get to know them.  Ask to hear their stories.  This is the kindest and most compassionate thing you can do for her.

To learn more about International Bereaved Mother’s Day, please visit: http://carlymarieprojectheal.com/

Tales of my Dead Daughter

Soul Pic

I was recently having a conversation with someone where I referenced my daughter and used the line; “before Miss Elliott was dead…”.  I instantly recoiled at the chastening sound of my words and began to feel as though I should apologize for not using a euphemism like the word passed instead, as society has taught us all to do in order to act mannerly.  Other than perhaps catching her a little off guard with my bluntness, I don’t think the person I was with minded at all.  And then I was annoyed at myself.

In a situation like this why would I let the feelings of others (even those only perceived or imagined) make me feel guilty over my word choice?  Was she any less living?  As if to say she had passed and was not just dead would somehow be kinder or less emotionally charged for the person hearing the words?  No matter how I put it, I still have a dead daughter.

We all use euphemisms from time to time either out of respect to those we are speaking to or to gird our own feelings, but when should we refrain?  When should we realize that to use them actually downplays the significance or magnitude of the event and that we should instead just spell it out frankly?  Give it the credence it deserves.  Does not a dead child demand such an overture?

Be thoughtful, but also be bold.  Don’t shrink away from the intensity of the situation just because it makes you uncomfortable.  Recognize it.  Respect it.  Embrace it.  Show those whom you are speaking to that you understand the level of importance this event holds in their life and honor it with your words.

New Year, Same You

As the end of December nears we’re busy scrambling to end what was, and eagerly looking forward to what (we hope) will be in the new year, we also stop to fondly remember days of auld lang syne, or “times long past”.  Auld lang syne is the fond remembrance of those meaningful times we’ve had, and times we quite possibly yearn for still.  This year’s-end anthem has always made me particularly melancholy.  I doubt I’m the only one.  As we move forward and turn away from the old and toward the new, it’s also only natural to want to keep something of your experience with you to carry over into the what will soon be.

In some ways these lyrics also feel like a warning, or at least a cautionary tale:

“Should auld acquaintance be forgot and never brought to mind?
Should auld acquaintance be forgot and days of auld lang syne”.

Should we get so wrapped up in impending change that we forget what was the past?  The song implores us not to forget what was because before you know it you’ll be looking back wishing for it once again.  And by this point you’ll have most likely moved so far away from it that you realize it has slipped through your fingers long ago.  The caveat here, of course is that we can also become so consumed with the past that we have just as much difficulty looking forward as others do looking back.

Things change.  The world changes.  You change.  And nothing can stop it.  Sometimes you don’t recognize the changes reflecting back at you in the mirror until you look back at an old photograph and pick out the comparative differences.  And then again, sometimes you’re painfully all-to aware of the changes you’ve experienced in your life.

Photographs in my life from three, four, five years ago and more show a smiling family of four.  Photographs today are sometimes painful examples of how one of these family members, who now exists only in a memory, is most often represented by a picture in a picture (as in this blog’s header itself).  Auld lang syne.

Everyone seems to be forward focused this time of year, making resolutions about their new year and they new them they want to be.  I sit here year after year, and try to figure out how, as another page turns on the calendar of life to keep my daughter’s memory alive…again.

Everyone else is changing around us. Their children are growing, their families are growing, their lives are shifting. We’re stuck in our own stalemate, and in some ways we always will be.  Those who’ve experienced the loss of a close loved one often tend to group their own lives into two categories:  before and after they died.   I want to share stories, and pictures, even anecdotes of my daughter with you when you share with me or in a group in general, but I know you’ve already heard them, seen them, know how they go. I’m sorry. They’re all I have. They’re all I’ll ever have. As time keeps ticking away I’m perpetually faced with a new year, and same dead daughter who will always be three years old to me.

A new year, Miss Elliott, but you’ll always still be the same you.

I still want to speak her name and share her life the way you share the lives of your children. I don’t want you to pity me. And I don’t want to make you uncomfortable either, but please speak her name to me. You won’t upset me, I promise. I didn’t forget that she died. I just want, most of all, to know that you remember she existed in the first place.  It helps me stay in the present by reassuring me that it’s ok to keep moving forward, all while yearning for the days of auld lang syne.

So speak her name unto my ears and let the music of her spirit flood my heart and soul.

The Magic Season; A Series of Unexplainable Events

2014 Card

Only twice in my life have I had such an experience.  The kind that leaves you in unexplainable shock-even dismay, yet conversely strangely comforted at the same time.  These experiences have left me questioning the theories of the known world, generally accepted as fact, and pondering the idea of what reality truly means.

Is it relative to time and space?  Is it relative even to your own individual perception?  Can a broader more encompassing scope of the idea of reality even exist, or must it be accepted piece by piece, individually, as to only create an illusion of the idea of reality in each of us?

I find that as time marches on, as I grow and learn, and as I mature the important answers in life seem to always be two steps ahead of wherever you currently are.  To additionally compound the complexity of any given situation, I also tend to find those answers (whenever I’m lucky enough to get one) in hindsight, though I would have been sure they weren’t there before.  Sometimes situations and experiences happen in which the explanation eludes you completely.  And how then do we quantify the incident, but can chalk it up to nothing less than phenomena.

Three years ago I stood at the instant-print machine in the photo department of a local store designing my Christmas cards.  Tapping away at the screen a young boy, I’d say eight or ten, walked up to Miss Elliott and I.  He stared at her quizzically for a moment and then directed his attention to me as he spoke.

“She’s sick isn’t she,” he said.

Caught off guard yet intrigued by his candor, “Yes she is,” I replied as I now looked quizzically back at him.

“She’s going to die soon,” He continued.

Shocked, I looked around.  Who was this kid?  Why was he here all alone? Where were his parents? “Yes, she is dying,” I confirmed to him.

“She won’t be here for very long. She’ll make it through the holidays and past the New Year, but probably not long after that,” he prophesied.

Tears formed in my stinging eyes. I wanted to ask him when, and how he knew this. I wanted him to reveal more information to me. Instead I stood there, paralyzed in some confused state of awe. Before I could say anything more his grandmother walked up.

“I’m sorry my  grandson’s bothering you,” she said as she shuffled him away and kept walking herself. “He’s not right. He says things. Don’t mind him.”

“It’s ok,” I told her. “He wasn’t bothering me, really.”

“I’m sorry,” she repeated, and they walked away before I could say any more.

I wondered so many things. How could such a young child have had the foresight to think something like that? What prompted him to say it? Was he a messenger? And if so, did everyone in his life blindly excuse his differences as just nonsense?  What made his grandmother think he was bothering me?  Even more mysterious, I wondered if he even existed in the world at all outside of this particular interaction. Was it possible he was there solely to speak to me?

I left the store more than a little rattled by my exchange with the Ghost of Christmas Future, and returned home. His prophecy now haunting my thoughts. She would die soon? When? Why? She was doing fine. I kissed her head and head her tight. I stared into her face and cried all night at the thought of losing her. It was, of course the nature of her condition. I had already acknowledged that she was, in fact dying. I just wasn’t ready for it. I knew I never would be.

Christmas came and went, and so did New Year’s. By the end of January, when she was still with us I chalked the would-be prophet’s omen up to my own overindulged imagination and put it behind me,  that is until February 3rd, when she passed away.

As I sit here today I think about this experience so often, and know that even now, even in hindsight, I still can’t explain it. I’ve decided that this, like so many other things in life, I won’t have an answer to in this world, and I’m okay with that. Perhaps the answer isn’t what’s important. Perhaps it’s what I, what we all make of the experience itself.