Tag Archives: Change

Taking Care of Yourself, and Taking A Step Back from Grief

After the earth-shattering diagnosis of our youngest daughter’s terminal illness that was Tay-Sachs disease I immediately became an advocate, in my own right for awareness, education, and prevention.

I took to the new community of affected families that was there to welcome me in with vigor. Families from all races, religions, and walks of life banded together in this group because of the one thing they had in common, the one thing that trumped everything else they didn’t.

It’s desperately devastating. A club to which no one wants to belong. But at least we have each other. It may sound horribly cliché, and while it is, it’s also true. There is comfort in know you’re not alone. Solidarity in our plight, as it may be.

Technology has been a godsend against feelings of isolation. With most of us across the United States not having any local contact with another family like ours (for us, Miss Elliott was the only child with Tay-Sachs in our state) the internet, specifically Facebook is where we turn to communicate with others.

On our private group page families can post questions, most that their doctors can’t even answer, and expect to have a barrage of responses, usually within minutes, from the experts themselves; other parents living this same life. Conversations usually revolve around day-to-day care, medication dosages, insurance issues, and tips for comfort.

I dove in full force. I too was suddenly one of those experts and had information to offer new parents as they joined our group. In some ways, I relished the offering of my experiences. It helped make them meaningful, exponentially so. I felt altruistic in my efforts, shifting my focus from inward to outward, which I suppose was also helpful to numbing the pain of the reality of our life. I felt it my duty to help other parents, in any way possible. We were a small, but mighty group who rallied around each other. That sense of community has pulled me through some very dark times, and I would do what I could over the next several years to be there for those who needed someone to talk to, to listen to them, to be a shoulder to cry on.

It’s been seven years since Miss Elliott was diagnosed with Tay-Sachs, and just over four years since her death, and now I find that I’m tired. I’m tired of speaking up whenever a question is asked. I’m tired of offering advice. I’m tired of being pulled into the throngs of the high-level emotions of newly diagnosed parents. And I also see those parents, perhaps once new to the group themselves are now the experts. The ones quick to answer a question or supply some advice, and I know, my voice isn’t required in repetition. And that’s ok.

I see questions posed, and as I find that I can’t muster up the emotional energy to do so I think to myself someone else will answer this anyway. It’s not that I don’t want to help anymore, I do, I just need to channel my energy in a different way. To not live in the trenches, as that’s no life at all. I wince at first, in acknowledgment of this feeling, but I know it’s not unique to me. It’s a pattern I see repeated by so many families who have lost their children over the years; taking a step back with less involvement, less communication, less participation. And I think it’s because at a certain point it becomes so mentally and emotionally draining one must step away in order to keep some semblance of sanity, or perhaps to regain it after their child’s passing. Especially to continue on in the world outside our sheltered group.

Two years ago I accepted a position with the National Tay-Sachs and Allied Diseases Association as their Conference Coordinator. It is absolutely my passion. It allows me a way to help every family in the organization. A focus and drive for my energy and for my desire to honor Miss Elliott’s life in a broader sense that keeps me involved, but not on a level that feels detrimental to my own mental wellbeing. As a parent of an affected child first, it’s given me a unique outlook that I hope helps to serve our families in a way only someone in my position could.

I’ll never stop advocating for awareness of Tay-Sachs disease, but finding a way that allows me to carry on in life without being weighed down has been essential to my ability to carry on. Everyone must find the right fit for themselves, but recognizing what works for you and, perhaps more importantly what doesn’t is vitally important for your own survival through the ongoing stages of grief one lives with, forever, after the loss of their child.

Our family photo from the Annual Family Conference in Orlando, FL, April , 2016

To learn ore about Miss Elliott and her life with Tay-Sachs disease, get your copy of Three Short Years here.

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.

A Life, As Told In Numbers

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Numbers have a way of driving our lives. We use them in every manner possible to evaluate ourselves, or even our worth, sometimes literally. One’s age, bank account, weight, the year of their car, square footage of their home, hours spent working in a day, children’s grades, and so on and so forth can lead to their feelings of personal value, or lack thereof, and even inadequacy. While some numbers bolster the feelings of praise or satisfaction, others tare them down with relentless fury.

Yesterday was my thirteenth anniversary. I’ve been married for thirteen years, but I met my husband sixteen years ago. I am thirty-two; half my life I’ve spent with him. Out of curiosity and nostalgia I tried on my wedding dress to see if it fit. It didn’t. I couldn’t get it zipped. There’s obviously only one real explanation here: clearly my ribcage has expanded (haha).

For your reference, here I am in my wedding dress in 2003, and then again not
fitting into it yesterday. Like I said…my ribcage must have expanded, but I digress…

So, I felt badly, of course. A stupid thing to fixate on, but don’t we tend to do this much more often then we should? I immediately took the dress off, mustered my best pose and took a selfie in the mirror. I sent it to my husband hoping to hear I was still pretty (and young, and slim, etc… [Which of course he said I was, but to be fair it actually was a good picture and magically made me look like I had a six pack, which in real life I certainly do not.]) But why was I punishing myself? So I’m not the same size I was when I was nineteen. I’m not that nineteen year old girl in any way. I’m not sure I resemble her at all. Why would she have anything to do with how I feel about myself? Why let a number sewn into a dress (or a pair of jeans) I’ll never wear again hold any of my own worth over my head?

I am so much more than a number on a scale. I have plenty of other numbers that matter a lot more than that one does.

How about that thirteen. That’s a good long time to be married, especially for a thirty-two year old. Two. That’s how many children I’ve birthed. Zero. The number of epidurals I’ve had. Eleven. Our oldest daughter’s age today. Three. The number of years our youngest daughter lived. Four. The number of years since her death.

A million. The number of times a day I think about her.

Forever. The length of time this grief will stay with me.

To be fair, there are plenty of other numbers I have no idea what their totals are. Numbers that I’m not sure how to incorporate into my self-evaluations, but numbers whom I know will always be infinitely more important than the ones on the scale. For instance, how many times I administered seizure medications, though twice a day for nearly three years is somewhere around two thousand. How many times I bathed her. How many diapers I changed. How many times I told her I loved her. How many times I’ve cried since she’s been gone. How often I’ve tried to conceptualize what she would have been like if Tay-Sachs disease hadn’t taken her life. And how many times I’ve failed to do so. Because I can’t. Try as I might, I have no idea who she would have been. She didn’t get the chance. The chance to develop her own personality, thoughts, feelings, perceptions, ideas, convictions. One tiny missing enzyme in her body took it all away from her.

I would love to change my numbers. Who wouldn’t? I’d be richer, skinnier, with a newer car, and a second home. I’d have a living child who was seven and not just the memory of a perpetual three year old for all of eternity. I would have stopped time, at the very least to live in the moment I held her, forever.

Time. Some of the cruelest numbers we encounter circle around this concept. To keep moving forward, to keep trudging through this life, we can’t fall victim to the folly of willing it to change. It will continuing moving along its own path no matter what we feel we have to say about the matter. No matter how many times I try to count the ever growing number of tears I’ve shed, and to organize them into an account of love through grief based on the time of their occurrence.

But all of those numbers, the good and bad, plotted across a graph do add up to begin to eventually form the description of who I am. They’re all part of what makes me, me. No one’s graph has a trajectory consistently moving at a forty five degree angle straight to the top. We all have ups and downs. They shape our character. If we let them, they mold us into three dimensional beings who have the ability to love, understand, forgive, relate, sympathize, and empathize. People who, because of their own plights are sensitive to those of others. People who can lend a hand, or shoulder, or ear when needed. Tried through fire. Sharpened with iron. Bent and broken. Clustered masses of infinite combinations painting the picture of humanity.

Each of us has a unique story to tell, and our numbers help us do just that.

Tales of my Dead Daughter

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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

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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.

What Could Have Been Never was to Be.

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We walked slowly, strolling around the shopping center aimlessly, my husband and I. It was a Saturday evening and we had reservations at an upscale restaurant overlooking the water on the twenty-first floor of a building in downtown Bellevue, WA. We were dressed quite nicely, in my opinion, and as I walked, hand in hand with my lover, my friend, and my confidante of fourteen years I thought about what we looked like, and what we felt like.

It was Loren’s birthday and I was taking him to a premier local steakhouse for dinner. We were too early to arrive for our reservation so we chatted about nothing in particular as we strolled. Then we passed a little boy who ran out of a storefront across our path to his mother. He was young, maybe four years old. Nothing remarkable happened. And then Loren said “That little boy had Down Syndrome”. “He did?” I replied. I told Loren that I hadn’t noticed which was odd, because I usually find myself gazing intently at children who are different. He had noticed this about this little boy for the same reason I usually did. I feel so connected to them. I stare so lovingly and longingly whenever I see such a child. I told him how I sometimes worried that the parents would catch me staring and think- “That you’re staring for the wrong reasons”, he said as he finished my yet unspoken thought.

“Exactly. Look at us”, I said. “We look like two young affluent city-ites out on the town without a care or a clue. No one knows what we really are. No one can see it. They would never know that in many ways we’ve lived their life, or at least a completely different one than we appear to live now.”

It feels odd for me to be out without my children. I feel naked somehow. Not in a shameful sense, just too exposed and a little disconnected. It feels as though a part of me, a part of my identity even, is missing. Although Elliott is gone, she will always be with me but you can’t see her. And Skylar, who is here was away for the night. She’s growing up and living her own life. She had plans of her own that didn’t include us, which is good and constructive for her as a person, to be her own person and not just our child, but that’s a whole other lesson of it’s own in letting go as a mother. One I’m hoping to navigate in tiny instances such as these over a long, long period of time.

It’s a problem that often plagues me: the feeling of being an outsider in society. I further remarked to Loren that his turning thirty-two that evening, now made him twice the age I was when we met. “Thirty-two”, he repeated while pondering the meaning of the number. We regarded our lives together, and how we’re not as young as the teenagers we once were, but we’re not that old either. They didn’t card us at dinner for our glasses of wine. Either we don’t look young enough to be carded anymore, or they just don’t care as long as you can afford to purchase one of their sixty dollar steaks. We laughed together at the prospect of somehow feeling seventy-five and twenty all at once. So young, but so much life lived and so many lessons learned already.

After dinner, while walking back to our car we came upon the Disney Store. I stopped at first to go in, but soon realized our nearly ten year old daughter has mostly outgrown her interest in this store. I also had the overwhelming urge and want to be able to buy an Elsa dress for my five year old like everyone else in America is doing right now. I miss so many things about my daughter, and as time goes on, I miss seeing her grown up and have the experiences that I see children all around me experiencing. Of course I wish she had never died, but I also wish she never had Tay-Sachs to begin with.

Loren’s thirty-second birthday which is actually today, May fifth: Cinco de Mayo, marks the beginning of change in our lives. He accepted a new position at a new company in a new city, which he started today. This will entail the selling of our home and our moving to this city, which is several hours away. After waging a civil war, of sorts within our own lives over the last few years we see these events as our own personal victory and newfound sense of freedom. Cinco de Mayo, how apropos.

So much change always makes me emotional and nostalgic. I suppose it does for everyone. Change is difficult, even change for the better. So much of it so fast could potentially be unsettling for anyone. I began to cry at the thought of Loren leaving for his new position. I would miss him while he was away, and before we could come join him, but it was my feelings of missing Elliott that were heightened with all these changes swirling around us. It was another new chapter in our lives, that would only involve her as a memory. It would be the same for every new chapter from here on out. I told Loren that I still wish she could have been here and been with us as we move forward, doing all the things a five year old would do and being a living part of our lives.

He held me tightly and consoled me and also told me that he knew I did, but that it just never was to be.

And of course, he was right, but it still doesn’t make those feelings any easier. C’est la vie.

A Cold, Dark and Desolate Place

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As Eater has come and now gone, I think back to all the pictures I see of families who visit their child’s grave and decorate for every season and holiday that passes by. Each flower or trinket so carefully placed atop the patch of earth concealing their children’s once precious and delicate bodies. A child so loved. An expression of that love that continues well past the length of their terrestrial life. These parents are there to respect their children’s physical vessel, to honor and incorporate them into their celebrations, and to keep them present in their own lives, as they’re forced to celebrate such occasions without them.

I didn’t visit the cemetery yesterday. Actually, I don’t visit the cemetery at all. I don’t lay flowers at Miss Elliott’s headstone, or even Easter eggs, Christmas poinsettias, or Halloween pumpkins. I just don’t go there. The cemetery is a cold, dark, and desolate place to me. I don’t feel her presence there. I can’t picture her there. She’s not there. I tired, out of respect and obligation, at least at first, to go and take part in all the typical and expected forms of displays of mourning. I took flowers, a stuffed lamb for Easter, little angel trinkets, butterflies, and even balloons on her birthday, but every time I went I hated being there. The hardest part was leaving. Driving away each time after a visit was as excruciating as they day of her funeral, when I had to drive away and leave her there, never to see her beautiful body again. That body that I had protectively held so close for hours each day, the hair I had stroked softly with my hands, the tiny fingers I held in my own. I would never lay my eyes on any part of her ever again. Those fingers of mine, which now sat idle begged to betray my mind and claw at the earth covering her body below. I wanted so badly to dig down to expose the four-foot pink casket that lay under the soil, and open it up to reclaim my perfect child. It disgusted me to know she (her body) was trapped down there forever. If I couldn’t get to her to hold her and be with her, why then did I come at all?

She’s not there. She’s with God. She’s with me. She’s in my heart. She’s in this house. Casa de Elliott; as I named our home when we purchased it. The home where she lived and died. Her bottles are in the cupboard. He clothes hang in the closet. Her memory flows through the walls. This home represents her life. The cemetery represents her death. So how will I feel to move away from her? Right now, her grave is within walking distance of our home. Is it a comfort that even though she’s not there, she’s so close? Will I walk away without a second thought as I intend to, or will I miss the cemetery when we move away? I suspect the latter. I suspect that even unconsciously the proximity of her body itself has always been a comfort to me.

We’ve recently decided to pick up and move away. We’re giving ourselves a fresh start and some much needed change. We’re excited at all the possibilities this move has to offer our family Our move will take us not too far away, but we won’t stay too close either. We’ll be around two hundred miles from where we are now. I don’t feel apprehensive about leaving her grave behind at all, but even that thought is worrisome. Grief can masquerade as many things in your life and trick you into thinking you understand or are okay with that which you in fact do not/are not. There’re so many thing we take for granted in this life and don’t miss at all until they’re gone. I wonder if a grave is one of them?