Tag Archives: Remembrance

Memories of a Lifelong Crusade

Memories tend to spring up in unexpected places.

Some recent remodeling led 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.

Sketch Original 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.

The Remnants of a Life

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I bought a desk this weekend. I had been needing one for some time. I work from home, and in addition to that, it would also be great to have a place carved out just for me to do my writing. A place where I can sit, in solitude and think or clear my mind. Focus on the words in my heart and put them on paper, or the internet, as the case may be. A creative space sectioned off from the rest of our home; like the sofa downstairs in front of the TV where I currently sit, feet up on the coffee table, laptop on my legs in our family room.

It’s not an office, per se, it’s also the guest room. And until last year it wasn’t even that. It was, in what turned out to be nothing more that vain hopefulness, (if such a thing exists) a pip-dream perhaps, our son’s room. A boy’s bulldog-brown painted twin bed, and matching dresser adorned the space where dinosaurs covered the bedding, curtains, and walls. After nearly three years of pouring out our heart and soul, not to mention time and money, into our pursuit of adoption it was time to face the fact that no son was to be called our own.

We simply couldn’t expend any more time, emotion, or energy to what had not only been a fruitless, but also psychiatrically draining endeavor. And I couldn’t look at that empty room a moment more. Out it all went, the day I decided to make it so, and a guest room, with a queen sized bed, night stand, and new décor replaced it immediately.

This weekend, I finally added a desk. And in doing so was able to clean out the old filing cabinet that now sat in the guestroom’s closet. A long overdue exercise in organization came about today as I went through the paperwork inside of it.

And there, tucked away inside the drawers were the remnants of a life. Mountains of paperwork I haven’t looked at in years. The new family resource packet from the National Tay-Sachs and Allied Diseases Association, the organization I now work for, that I realized only today, during my daughter’s illness, during her life I never even opened or looked at at all. Expandable file folders filled with medical information. Assessments, intake evaluations, and numerous other documentation relating to Miss Elliott’s diagnosis of Tay-Sachs disease, and care afterward. I found forms for orthotics, medically necessary seating and mobility information, recommendations for such, medication lists, notes from doctor visits, appointment cards, insurance statements, bill after bill for services rendered; neurology, genetics, feeding therapy, physical therapy, occupational therapy…and on and on…

Paperwork

Why did I still have all of this? Why had we brought it with us when we moved? Why hadn’t I gone through it until now?

I guess I just hadn’t tackled it yet. Little by little. Not that long ago this was our life. These regimens were our routine; our known normal. It’s odd to realize how little our lives now resemble the one we were so accustomed to just a few short years ago. And it’s strange how these things, that all add up to medical fragility, immense care, time, and love, are now utterly meaningless. One thing you hear from families of medically fragile children is how that when their child is alive these things come to embody who they are, and once they are gone, they’re just a symbol of the disease, not the child. Nothing but a stack of papers exists, in physical form, as the remnants of our daughter’s life here on earth. And day by day the reminders of their being gone, the lack of a physical presence creeps in and take over our lives. Like the desk, or the guestroom, which would have been her room had she still been here with us.

But, out they went, that stacks of papers. We don’t need those remnants to be able to remember her, like some shrine to her physical being. She’s not there inside of those items anywhere. They may be tangible, but they’re meaningless. She exists in our hearts.

Give Yourself A Medal

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Give yourself a medal. It’s what my friend, Jennifer Pastiloff urges the attendees of her writing and yoga retreats to do for themselves. Her basic theory is that no one else is going to give you one, so you need to give yourself one. Go ahead and be proud of any and all accomplishments you’ve made, and acknowledge them.

Today, I’m following that advice. Today is the fourth anniversary of the day my daughter died, and you know, I’m giving myself a medal for not losing my effing mind.

This loss is hard. This grief is hard. Every day without her is a burden I am forced to bear for the rest of my life, and It. Is. Hard.

In the days leading up to her birthday and the anniversary of her death each year I find myself becoming increasingly scatterbrained, anxious, and worrisome. I become short tempered with my husband and anyone else who has the unfortunate experience of being around me in those days. And in small ways, I just sort of inwardly ‘lose’ it.

While texting with a friend yesterday who knows this type of loss firsthand, she mentioned how the mere anticipation of these days cause her to break down, and by the time the significant date rolls around she’s practically numb.

I so get that. That’s me. Soul Pic

Acknowledgement helps. Each time the people around you take a moment to say your child’s name, recant a memory, or just let you know you’re on their mind a layer of pressure is lifted. Grief is lonely, and when those around you show you comfort and compassion, it can pull us out of the feelings of isolation we so often live in.

We may all have people in our lives who will never mention our children at all. The anger, disappointment, resentment, and hurtfulness that I’ve had to reign in and snuff out has often caused me a great deal of animosity, and trepidation. I don’t always deal with those feelings in the most graceful of ways, but such is the nature of grief. More so, it can be an unnecessary burden, a challenge, in learning how to accept that those relationships are whatever they are, and there is nothing you can do, or should have to do to alter them.

She’s dead. No one has to show up for a birthday party or buy her a gift. It costs nothing to tell someone you are thinking about them. It doesn’t take much time or effort to let someone know you remember their dead child. And yet, for some, those outputs of miniscule effort never happen. You may be thinking about the family or friend who lost their child, but they need to hear it.

It takes a lot of patience, love, and acceptance to move on when a call never comes or your child’s name is never spoken.

But when it is, the joy that fills your heart is unmatched.

My dad calls me all the time. He makes a point to talk about my daughter throughout the year. He tells me about his memories of her, and when he talks about her to other people. And he makes specific effort on her birthday and the day of her death, even the days leading up to, to let me know she is on his mind, and in his heart.

It means more to me than he will ever know. Ever.

And that’s all it takes.

So instead of focusing on who isn’t there, the phone calls that never come, or the messages I don’t receive. I’m choosing to stay focused on the wealth of support I do have, and all the remembrances that come my way. I’m giving myself a medal for not losing my mind, because I’m still standing, that shit’s hard sometimes.

***

If you’d like to honor Miss Elliott today, a donation to the National Tay-Sachs and Allied Diseases Association would be greatly appreciated. http://www.ntsad.org

For more amazing insight on humanity, wonderful writing, and info on how you can be a part of one of her retreats, visit Jen’s site: http://themanifeststation.net/

No Words

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“You can be amazing you can turn a phrase into a weapon or a drug” -Sara Bareilles, Brave

Words hold power. The power we assign to them. We get to decide what they mean, and we can do so on an individual basis. They can mean one thing to one person and quite another to someone else. In this situation we’re at risk for our sentiment being lost in translation, so to speak. Words convey thoughts, feelings, and emotions. With them we can tell stories and share moments in time. We can even recall memories and give those meaning as well. They can also be used to hurt. Though they may not break your bones the way we’ve been taught that sticks and stones will, sometimes words will hurt you even more. All the words in the world, all of their uses, meanings, and inferences, and sometimes we can’t seem to find a single one to do us justice.

What do we do when words escape us? How then do we convey those thoughts and feelings whelming up inside of our hearts and minds?

This week I found myself standing in front of the greeting card section of my local grocery store. I was there to buy a card to send to a friend. I wanted her to know I was thinking of her. I wanted her to know I was remembering her son’s life, the anniversary of his birth and subsequent death later that same day. I wanted her to know he is not forgotten.

I stood there, in front of the cards searching for the right one. The one to convey my sympathy, unfortunately, my empathy and also comfort to her as well. There were cards that expressed you were thinking of someone, cards of support, and cards of sympathy for loss of grandparents, parents, spouses…and even pets. Yes, pets. But there were no cards for loss of a son or daughter. Loss of pets, but not of children.

They don’t make cards for that, not that they stock at that store anyway. They don’t make words for that. When you lose a parent you are called an orphan. When you lose a spouse you are called a widow(er). The very idea of loss of a child in our society is so unthinkable, unimaginable, horrific, and taboo that we do not even have a word for it. It is literally unspeakable.

Nothing works more efficiently to keep uncomfortable, unenviable, hopefully ignorable pieces of society locked away in the shadows than lack of speech. And that’s exactly where society wants to keep it, us. Why? We’re scary. We know you want to keep us at bay. We get it. We know how daunting it is to talk about, how difficult to imagine, and truthfully, how alarming it is for you to even think to pull us from the shadows and to be forced into the light of knowledge to concede that you look just like us and in further consideration that you could, in fact, be us. After all, isn’t everyone afraid that if our light were to shine too brightly and you got too close that your wings might melt?

Nothing makes us feel like more of a monster to be hidden from than being expected to exist only in those shadows.

It’s a simple sentiment that means the entire world to parents of lost children; we want to know that you still remember. We know they are gone. You will never remind us of that fact. We live with the scars of their loss every day. We just want to know that you remember they ever were here in the first place. Not to make you uncomfortable, not to punish you, or push you away but for our own soul’s soothing. For our broken heart’s sake.

My child lived. She was a person. She mattered. I have thoughts and memories of her that permeate every day of my life.

Sing her name unto my ears and let the beauty and magic of her spirit radiate into my heart and soul.

“Say what you wanna say and let the words fall out, honestly, I wanna see you be brave” – Sara Barelilles, Brave

New Year, Same You

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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.

Three Long Years

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We are rapidly approaching the time when it will have been three long years since our precious Miss Elliott passed away. A scant four months later and then we will forever enter into that tragic time period that we will live in for the rest of our lives; the one in which she will have been gone longer than she ever was here.

I worry about that time. I worry about her memory. To so many people that I meet she is now only a story, and idea, if even a remembrance, but not a living person known unto them. She is alive in my heart and soul. She is imprinted onto my being. I vow to spend the rest of my days spreading her message in her stead about the beauty, value, and importance of every life, no matter how short, no matter how small.

“Serenely I could while away the hours. Stay in contentedness with her forever, just staring at her beauty, stroking her face, holding her head and massaging her hands and feet. This was our life, the one we share. It didn’t look exceptionally pretty to others. It was expensive, but not fancy, cumbersome, and not at all convenient, imposing and difficult. No one coveted it. I kept it close, as close as I could, for as long as I could. No matter how unattractive this life was to others, it was mine and it was my most prized possession.”

-excerpt from Three Short Years: Life Lessons in the Death of my Child

It’s been just over a year since I published Miss Elliott’s book. I sincerely hope that everyone who reads it takes her message to heart and learns some of the many lessons she bestowed on us with her presence while she was here. She taught me so much about life itself. I am eternally grateful to have had the opportunity to be her mother.

To get your copy of Three Short Years, and learn more about Miss Elliott’s life and our journey with her, click here:
http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Three+Short+Years+by+Becky+A.+Benson