Tag Archives: Advocacy

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.

 

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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.

 

 

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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.

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.