Tag Archives: Child Loss

Running Away and Joining the Circus (and Finding Myself in the Process)

I first met my dear friend, Shelly Ogden in the most unfortunate setting; the hallway of a hotel in St. Petersburg, FL after our first session of the NTSAD Annual Family Conference in 2010.  We were both attending for the first time.  Miss Elliott, who had infantile Tay-Sachs and Kaleb, who had infantile Sandhoff were nearly the same age, and had both recently been diagnosed.  What I remember most clearly is Shelly stopping me in the hallway and telling me that she just wanted me to know that I was saying all the same things in that session that she was feeling, but couldn’t bring herself to say.

The thing about living with these rare diseases, and impending loss is how instantly, and how intimately the bonds we parents forge are.  Both Miss Elliott and Kaleb died in 2012, and while Miss Elliott died in February, Kaleb died on October 3; Miss Elliott’s birthday.  Shelly texted me early that morning to let me know that Kaleb must have wanted to go be with her to help her celebrate.  I was gutted for her.

And the thing about outliving your medically fragile child, is that in many cases you’re suddenly, nearly completely lost.  When your everyday life revolves around continuous care, medications, positioning, appointments, therapies, etc., the silence can be deafening.  Constricting in your lungs like a lack of air leaving you writing in pain, desolation, and despair.

As Shelly shares below, though she couldn’t run away from the pain she was feeling, she was desperate to find a reason to be, and to find meaning, and value in her life.  She was desperate to find Shelly again.  And she did so, by looking in the last place she would have expected to go searching:

“I ran away and joined the circus after the death of my son. Okay, not really, but let me explain. Kaleb had infantile Sandoff disease and died just eight days after his fourth birthday. Grief can consume you, especially when you are grieving the loss of a child, if you let it, and I was determined that I was not going to let it. I never wanted my surviving child, Christopher, to feel like his life was less important, so I decided to show up for him, and continue to live for Kaleb, who didn’t get that chance. Even when I didn’t want to do it. Even when it was a struggle to make myself do it. I owe that much to the rest of my family – and also to Kaleb.

Ogden Family

      After his funeral, when family went home, and Dave went back to work I had nothing. I felt lost. I felt like I was wandering without a purpose. I’d go window shopping to kill time but even that was too hard. I’d see a mom walking with her son and I’d literally have to run out of the store or risk breaking down in front of everyone. I then found myself making daily trips to the cemetery because that is where I felt close to him, and because I couldn’t stand being inside our empty house. On my way back from one of those trips, I stopped into a women’s only dance studio and bought a membership. I decided it was time to start taking care of myself. I thought I’d start off easy and attend an aerial yoga class, but when I got there, the instructor warned me that what I was about to take was an aerial silks class. I was already there, and I didn’t know the difference, so I decided I’d stay.

Little did I know what I was in for. I am a retired law enforcement officer, and I’ve been through some tough training but this class was the most physically demanding Shelly Aerialthing I’d ever done. First and foremost, I am afraid of heights which was a challenge. The silks physically hurt my feet, and my forearms, hands, and biceps felt like they were one fire. My entire body was screaming, but for one hour I found that I could focus on something other than the pain in my heart, and that was an amazing feeling. One thing I have discovered, as I dove head first into the world of circus arts, is that the more I learn to “fly” the closer I feel to Kaleb, I no longer feel the need to visit the cemetery every day.

The friends I have made in the aerial world are some of the most supportive and caring people I have ever met, and they’ve changed the way I look at a lot of things. My first instructor, Jessie, played such an instrumental part in my healing process. There are countless times when she would sit with me and just let me cry on her shoulder, which was very therapeutic. She’d encourage me to join class when I was ready during those difficult days where I felt like I was constantly on the verge of tears, and I always felt better out of class.

This past August, I asked my current instructor, Lauriel, to choreograph a piece for me to Danny Gokey’s “Tell Your Heart to Beat Again”. I told her I wasn’t the kind of person who could perform in front of an audience, but I wanted to record this piece and post it on social media in honor of Kaleb’s angelversary. I explained that this anniversary would mean that Kaleb would be gone, longer than he lived. What she came up with was even better than what I expected, and was packed with so much emotion. I was so proud of what she had done and when I finally got it recorded we sat together hugging each other and crying. The release of having finished it, was more than just finally recording the piece, but the emotion of the song and the action that was put into the routine all hit me at the end.

I have always been the quiet observer, the wall flower if you will. I like to see everything going on around me, but I prefer to stay out of the lime light, until recently Shelly Circuswhen Lauriel talked me into performing. I stepped out of my comfort zone and become a performer equipped with identification that titled me “Talent”. So, for one night, I joined the circus, and the spotlight was on me. It was oddly both terrifying and exhilarating at the same time. I was bolstered by the fact that my oldest son and husband were in the audience to support me and I know Kaleb was in the air right next to me.

I’ve decided to continue to live even when my world has been turned upside down. It was a choice I had to make, and it didn’t come easy. Some days the grief is crippling, but I think about the life Kaleb had to live, one that left him paralyzed, in silence, tormented by seizures, unable to enjoy the taste of food, and he reminds me, if he can do that, I can do this – I can live fully and honor him. I have discovered that in order to navigate through life after the loss of a child you have to find your “thing,” your passion. My faith gives me hope, my family gives me a reason, and my aerial world gives me wings.’

“There is freedom waiting for you,
On the breezes of the sky,
And you ask, ‘What if I fall?’
Oh but my darling, what if you fly?”
Erin Hanson

 

A Five Year Study in Grief

This last Friday marked five years since our daughter died.  Five years.  Five years?  Sometimes it’s so close to the forefront of my mind that it overtakes me.  The reality of it weighs me down and my mind spins out of control.  Other times I can’t put my finger on it being factual at all.  It’s surreal.  It’s visceral.  It’s confusing, and overwhelming, and still unbelievable.

Each anniversary of her death seems to strike me in different ways.  I never know how I’ll feel as the date approaches, but usually I’m OK.  This year I wasn’t.  I’ve come to realize the physical toll grief takes on me.  And every year at this time I get sick.  Headaches, fever, sore throat, sometimes vomiting.  My symptoms seem to run the gamete, but no matter what they may be their cause seems to be psychosomatic.

Realizing this feels like a big step in helping myself mitigate these factors, or rather it should, but I’m not always able to mind-over-matter my way through them.  Sometimes, usually in the week leading up to February 3rd I’m susceptible to them despite my best efforts to stave them off.

This year I cried.  A lot.  I felt an overwhelming sense of impending dread.  I felt weighed down and unable to perform the most mundane of tasks that day.  My mind swirled.  It was scattered.  I paced in circles throughout the house without reason.  I lost my breath and suffered a panic attack.  I prayed.  A lot.  I just couldn’t seem to be still or calm.

I granted myself these moments, moments I usually deny myself, to let it out, to feel my pain and sorrow.  To be human.

It’s been so long since she’s been gone, much longer than she ever was here, that sometimes it’s hard to remember what our life with her was like.  The fact that our life with her was all-consuming doesn’t change that fact.  The fact that our life looks so drastically different now only makes it harder to connect to what it once was, in my mind.

Loren left for work, but not before asking if I was ok.  Unable to put a brave face on this morning,  “Just sad,” I told him.  “I know,” he responded.  He told me he loved me, kissed my forehead, and recounted that he was so in tune with my stress that he can always tell if something’s off.

An hour later I called him for no reason other than to hear his voice.  I needed his comfort.  He assured me he could come home if I wanted or needed him to. Gathering myself I declined his offer.  I was determined to get through this day without further disrupting it for anyone else.

I forced myself to shower.  It took a long time to go through the motions.  I dressed, and eventually went outside to once again shovel the drive as it had now been snowing heavily all morning.  It needed to be done, regardless of what day is was.  The weather didn’t care.

In the midst of my shoveling effort my brother pulled up.  He stepped out of his truck and presented me with a bouquet of pink and purple carnations.

I cried again.

Skylar texted and asked me to pick her up after school and go to the orthodontist because the wire on her braces had shifted and was sticking into her cheek.

Life keeps moving forward.

As she opened the door and got in the car after school she too asked if I was ok.  Crap, even she can see it on my face, I thought.  I’m normally much more adept at masking it.  “I’m ok,” I lied.  I’m sure she didn’t believe me.  I struggle with wanting to tell her what day it is for her to share in remembering and honoring her sister, and vice versa to shield her from feeling the sadness I feel on this day if she doesn’t already realize the significance of the date on her own.  I didn’t mention it further.

At the orthodontist’s office I waited while she went back into the ortho chair.  I was the only one in the waiting room at this time, except the receptionist at the front desk.  Once again, preoccupied with my own issues and becoming overwhelmingly emotional I began to cry.  Noticing my obvious breakdown the receptionist came over to ask if I was ok.  I lied again that I was fine, but it was a pretty poor performance so she leaned in to give me a hug.  I apologized.  I wasn’t necessarily sorry for making someone else uncomfortable, just for the fact that I was causing a scene and let my emotions get the best of me in public, which I am usually able to contain.  I told her today was the anniversary of my youngest daughter’s death.  She began crying as well and told me that her son died in June.

And there it was.  I don’t have the market cornered on grief, even though I had been wallowing in my own loss all day.  At least I knew she understood and didn’t think I was crazy.

Skylar came out.  We finished up the appointment, and then the receptionist told her they were having a game that day.  She told Skylar she could win a prize if she threw the beanbags through the hole in the board she was holding.  Two out of three in and Skylar won a pair of movie tickets and a t-shirt.  She was ecstatic.

A friend texted with her remembrances of Miss Elliott and commended me on always carrying myself with such grace in light of my loss.

Ha. Not today.

It wasn’t until later that I realized I hadn’t seen the staff at the ortho office offer this game to any of the other patients as they left the office that day.  The receptionist had just been exceptionally kind due to my emotional distress.  It reminded me that it’s ok to be human.  It’s ok to show my feelings of sadness and grief.  As uncomfortable as it may make me, sometimes it’s necessary to let it out.

By the time we got home my eyes were blurry and stinging so badly from all of my crying that out came my contacts and I wore my glasses for the rest of the night.

Walking in the door my husband tells my I’m beautiful.  I laugh at his seemingly horrible judgement, but he means it.  He truly believes it.  Even in that moment with my red, puffy, makeup smeared eyes. He loves me fully; in spite of my flaws, mistakes, and the ways I’ve let him down over the years.  It reminds me that even through the ups and downs, even in the midst of grief, being here at home with the two people who mean more to me than anyone else in the entire world, the only two other people who can share in this level of grief, as intimately as I can, is all I need to get by.

 

Breaking with Tradition

Four Christmases.  That’s how many we’ve celebrated without our sweet Miss Elliott at home in our arms.  She remains now, only in our hearts and memories.  A life remembered becomes a culmination of ever changing milestones from the moment your loved one passed.

In church yesterday our class leader asked the group about their sense of time, and how they measure it.  Nearly everyone gave examples of moments like x amount of time since graduation, x amount of time since we were married, x amount of time since my children were born, etc.  I remained silent, but in my head I whispered to myself; four years and ten months since our daughter died. 

I whispered this in my heard for several reasons.  One, the more time that goes by people  seem to know your answers to questions like these before you speak them.  They already know you’re the lady whose daughter died.  Furthermore, they don’t like to be reminded about it. Second, it’s also so solemn that I wind up not wanting to bring down the group, so-to-speak.  And third, I worry that when I speak these things aloud people will think I’m looking for sympathy, which I am not.  You learn over time, that outsiders don’t understand your loss or grief and you tend to keep it closer and closer to heart.

Our society does not want to grief to be something brought out of the shadows that they have to face.  They’re much more comfortable knowing, somewhere in the recesses of their mind that although it does exist, for others, they do not what to come any closer to its unpleasantness.

Milestones of any kind for those who’ve experienced a loss can be overwhelmingly emotional.  The holidays tend to amplify these for many people.  We developed our own new traditions to incorporate Miss Elliott’s memory into our holiday routines. Things that made us feel happy and were right for our family.  A way to honor the fact that we are still very much a family of four, even if Miss Elliott isn’t physically present with us.

One of these new traditions was to set up our Miss Elliott Tree.  A little white tree, lit with white lights, covered in pink and purple ornaments.  Miss Elliott’s favorite color was pink.  Thought she would eventually become blind, lose her mental and cognitive abilities, and never spoke a single word due to being born with Tay-Sachs disease we knew it was her favorite because her older sister, Skylar, five or six years old at the time assigned it to her.

For the last four Christmases we’ve made a point to purchase new ornaments for the tree each year, and Skylar has even taken to setting it up in her room.  We would carefully unwrap each of these special decorations and hang them thinking about how they represented Miss Elliott and her memory.

This year, after Thanksgiving we finished up our traditional tree in the living room, a tree trimmed entirely by Skylar for the first time this year.

“Let me do it.  I think I know where you want the ornaments and how you like them,” she told me.

Now in seventh grade and on the verge of teenagehood Skylar has watched me carefully place each of the perfectly color coordinated and themed ornaments over the years and wanted to try her hand  – on her own.  I agreed, and she did so with perfect execution.  It’s wondrous watching her grow and evolve into her own autonomous being.  A touch of myself, a touch of Loren, and wholly her own person.

“What about the Miss Elliott tree,” she asked?

“You know, I just wasn’t going to put it up this year,”  told her.

“Oh.  Are you just done with it, then?”

“I think I am.  How do you feel about that?”

“I feel done with it too.”

We told Loren about our decision, and he agreed.  That was that.  None of us felt the need or desire to set up the tree any longer.  It had served its purpose for us during those first few difficult years after losing Miss Elliott.  I don’t really see it as any sort of advancement through grief with this fifth impending Christmas since her passing.  I don’t like that kind of terminology because it denotes that one day we will stop grieving her loss.  As if grief over losing your child were something to move past.  That there is some sort of end point to it. Rather, like most things our ideas and feelings about it have changed over time, and continue to evolve year after year.

fireplaceMiss Elliott still holds the same place within our hearts that she has since she was conceived.  And her memory is still cradled just as softly there as when she passed.  We honor her life in so many ways, but we no longer felt beholden to this tradition to do so.  The little white tree decked out in pink and purple isn’t something I needed to utilize in order to celebrate anymore, and that’s ok.  I still continue to hang four stockings over the fireplace.  To me, it’s a reminder that we are, and always will be a family of four.  I cherish this thought and it makes me happy when I look up and see the four of them hanging there together. In a very small way, it gives me a sense of peace.

If you are grieving a loss this year I hope that wherever you are on your journey you find traditions that are right for you and your family.  Ones that help you have a little peace in your heart and add joy to your holidays.  Whether that mean keeping up time honored traditions, putting them to rest, or discovering new ones altogether; there are no wrong ways to celebrate your loved one.

 

 

 

 

Grief Doesn’t Die

Memes and GIFs are two words that came out of virtual obscurity…literally, in the last several years and are now household words on the tongues and lips, assuming you can correctly pronounce them, of seemingly everyone in America.  Pop culture and the world of the internet have wedged their way into every detail of our lives for better or worse.

Almost daily I find myself and my husband or friends texting these quippy little quotes back and forth to each other.  Some are just either so profoundly fitting in a situation or, more likely, just incredibly funny.

Of course you can find memes, often comical or at least satirical, to suit any situation; political issues, to family gatherings, workplace frustrations, etc..  But sometimes there are those meant to speak to the deeper feelings we find ourselves dealing with when words of encouragement are needed.

As the mother of a child who has passed, I see a lot of these posted on Facebook, Instagram, and even Pinterest from others who have traveled the same road I am on myself.  And occasionally I post them too.  Once in a while one comes along that just speaks so clearly to how I’m feeling that it feels like it could’ve been taken from my own personal experience.  I guess before the modern day meme came along this duty was reserved for song lyrics sang (specifically to us) over the radio or the occasional Hallmark card – sent via snail mail, of course.

All too often though, I find that while the sentiment may align with my feelings, the execution is lost on me. A metaphorical ball metaphorically dropped, if you will.  I recently ran across one of these little posts which proclaimed that “When you can tell your story without crying, that’s how you know you’ve healed”.

meme

Now, “healed” is a relative term to varying personal degree for everyone.  While it may be true for some, no blanket explanation could ever cover such a wide ranging, deeply emotional, and profoundly personal topic. I just want to say to the thought expressed in these seventeen all-knowing little words:  bullshit.

If this has been your experience and you have gotten to this point, I am so utterly happy for you and I encourage you to celebrate the place you’re in in your journey and the accomplishment you’ve made.  Hopefully the peace that encompasses it is a blessing to you in your stay.  I can only account for my own experience, of course, but what I can say about my journey is that the absence of tears runs so much deeper than being considered healed at the lack of their presence.

I will never be healed of the loss of my daughter  Not in the conventional, physical sense anyway.  Not until my time on this earth comes to an end and am I reunited with her in spirit.  Until that time, I am forced to wander around broken, like may of us are.  Shattered like a mirror due to myriad circumstances we’ve encountered and endured.  No matter how well you glue the pieces back into place the evidence of the break remains a part of the structure forever.  The mirror may be reconfigured, but it will never not be broken.  Broken is not bad or wrong, it’s simply the sum of the experiences that have taken you to become the person you are today. With rich experiences, both good and bad, we’re all weaving the intricate tapestries that are our lives.

Does that mean that healing cannot happen?  No, it doesn’t.  For some it may.  Yet others may unsuccessfully or unwittingly chase it for the duration of their existence.  Some may simply adapt to the new being they have become.  And still many more find their new identity in the pieces of their life and spend the remainder of it romancing and nurturing their newfound brokenness, essentially becoming its prisoner.  All of this in both positive and negative, healthy and unhealthy ways.  It’s just that tears are not necessarily the barometer of health.

Not expressing tears for me, simply means I’ve become accustomed to my situation.  I am used to it.  There is no longer any shock or novelty in child loss in my life. I am desensitized to the idea of what most people would find too horrific to even entertain in their mind, i.e. the “I can’t imagines” because I have already lived it.

It’s simply another form of survival.  It’s part of how I mitigate my pain.  I have many wonderful aspects of my life to focus on, though they still doesn’t lessen the pain I feel in her loss.  I just refuse to let that pain swallow me up.  I can’t well up and break down every time my daughter’s name is mentioned or someone asks me how many children I have.  In every part of my life; my job, my writing and speaking, my social relationships, my daughter, and her death are front and center.  Not only would it not behoove me to break down at every retelling of her life’s story, but (for me) it wouldn’t honor her, either.  I just don’t let tears overtake me.  That doesn’t make me any more or less healed than anyone else.  It’s simply a personal style of functionality.

I carry on with my life.  I am happy, healthy, and productive.  I tell her story a hundred times in a row and don’t shed a single tear.  And yet, not always, but from time to time I may well up at the site of a dress hanging on a sales rack that I wish I could buy her.  Or I pause to catch my breath whenever a particularly difficult hymn is sang during church services.

Grief and pain coupled with crying, though certainly not mutually exclusive, are not necessarily married to one another either.  And with a situation so personal, so devastating, who is to say that everyone I interact with is worthy of my tears?  For me, my tears are an intimate expression of my love for my daughter, and something that I’m accustomed to compartmentalizing, not sharing openly.

When it comes to grief, of any kind, please don’t oversimplify these nuances by applying generic thoughts on such a complex topic.  There is no handbook to reference.  There is no cookie cutter for grief.  Someone may not be meeting what your expectations of grief are, but that doesn’t mean that they should adjust their expressions, barring physical and mental harm, of course.  More likely it’s an adjustment of expectations of those grief expressions, and a more open discussion that’s required for deeper understanding.

Most importantly, just be kind and supportive.  Offer a listening ear when needed, and don’t feel that it’s your duty, or even within your power to ‘fix’ them.  Just allow your friend, coworker, or family member the time, space, and respect to grieve in the way that’s comfortable for them.

I encourage you to share you thoughts on what your personal barometers of healing have been in your own life, in regard to any event you’ve experienced. Let us come together to transform
the ideas of what both grief and healing look like to the world outside our doors.

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.

 

FullSizeRender (6)

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.

 

 

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.

Give Yourself A Medal

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/

 

 

 

An Unlikely Hero

I first met Karen Ledsham in 2009, shortly after my Miss Elliott had been diagnosed with Tay-Sachs Disease.  We met through the National Tay-Sachs and Allied Diseases Association, online.  I lived in Seattle, and Karen lives in the U.K.  One of the great things that I learned about Karen was that she was sending her daughter Abigail’s doll, Pippy around the world to see the sights that Abigail had never gotten a chance to see.  Karen shipped Pippy to me and I took her to Boston in 2011 for the NTSAD’s Annual Family Conference.  By this time I had made a scrapbook for Pippy so everyone could chronicle their journey and send the memories back to Karen each time.  I was happy to have a chance to escort Pippy across the USA.

NTSAD 2011
Miss Elliott and I (front and center) with Pippy, and several of the families at the NTSAD Annual Family Conference, Boston, 2011.

Having survived the unthinkable, the death of her daughter, Karen would soon embark on a new and horrific journey in which her seemingly healthy son, her only other child, would soon be battling bone cancer.  Still standing today, Karen writes about her unlikely journey to becoming a hero to so many families facing child loss, as well as to those who haven’t.

“Everybody keeps telling me or, commenting on Facebook at how strong I am. They tell me how much they admire me, but I’m feeling very anxious and worried after twenty one months of time spent staying at home with my grief about going back to work in just two days’ time.

At least that’s what I’ve been telling people, but what I’m really feeling is sadness and guilt about carrying on with my life. I’m feeling sick to my stomach of having to walk through the same doors, to the same rooms, and see same people, all carrying on as if nothing has happened or changed when everything has happened and changed for me in my life. Everything.

I haven’t worked since that Friday evening back in April 2014 when the Accident and Emergency doctor told us our son, Harrison had a probable bone tumor. It turned out that he did in fact have bone cancer. He fought hard, but his battle was cut short just over a year later.

The cancer first took his leg, then his childhood, then his life. At the same time it took my life. The life that I had learned to live again after the unimaginable loss of our daughter, Abigail six years before to the genetic condition known as Sandhoff’s. Within the next year, I would also lose my mum. I didn’t know how I would survive those losses, but eventually life was going good again, we were all learning to survive and even enjoying life again. I had gone back to work four months after losing Abigail and although it was extremely difficult, as I’m a nurse, it was the right time and we carried on as best and as normal as we could because we had Harrison to think of. He needed a mum who was capable of caring for him and attending to his needs. I felt that in going back to work, it would help me stay focused and present in my life, and his. I didn’t feel as though I had a choice not to carry on.

Abigail and Harrison
Abigail and Harrison Ledsham

I was constantly frightened that something would happen to Harrison after Abigail was diagnosed and after she passed. I suppose I wrapped him in cotton wool. But at the same time wanted him to have a full and varied life, one she had missed out on. We put everything and all our time and energy into him.

After going back to work part time and under no circumstance would I work any extra hours. All my free time was precious, precious time to spend with Harrison and Paul. Colleagues used to question why I wouldn’t I work extra as Harrison was in school. My answer was always the same, I wanted time at home and to not be too tired or exhausted when he came home so I could give him my all. We let him take part in evening and weekend activities. If he wanted to do them, we did. He was busy with activities seven days a week. He was nearly a black belt in Karate, played rugby, golf, the French Horn, piano, had Spanish lessons with tutor, Boy Scouts, street dancing and drama. He enjoyed it all, but most of all we enjoyed seeing him happy and healthy and experiencing and embracing all the things life had to offer.

Now, after losing Harrison too, I find myself trying to move on, but the fact is I don’t want to move on without my children. I have no other children so I don’t really see the point like I did before. What other choice do I have? I could end it all now, and I have constantly had this thought, every day since he died. Even so this pain is so unbearable, I couldn’t do that to myself, to my family, to the memories of my children. So I know I need to take baby steps.

My going back to work is not about the money. We have our savings, and to be honest what do I need much money for now anyway? In many ways I feel that I can’t face nursing, looking after sick people, seeing death daily, doing the job I trained for and loved for so long, but what else can I do.

I made a decision that the Cancer wasn’t taking my career so I’m just going to be working one day a week, doing none clinical job and going to see how I get on. It will be nice to see everyone again but I can’t say I’m looking forward to it. I’m not looking forward to not being with Paul, my husband during my hours at work. We haven’t spent much time apart in nearly two years and I’m feeling worried about that too. Paul isn’t working either yet. After he took his leave to be with Harrison, his company was bought out and moved to another location. All two-hundred plus employees were let go. Now, after 25 years of service, where does he go from here? He doesn’t have the energy to start over somewhere new.

We’re not sure who we are anymore. So much of what we spent our lives building is gone. So much of what defined who we are doesn’t exist anymore, but every day I wake up, and here I am. I didn’t ask for this, I don’t want to be strong, I don’t want to be an inspiration. I just want to be a mum. Although so many people look at me as a hero for what I’ve endured, my heroes will always be Abigail and Harrison.”

A Brief History of Grief

“Mom, how does this look?” she asked seeking both confirmation and approval. “It looks good,” I tell her. And it does. Now in middle school, on the precipice of becoming a teenager, she’s starting to learn how to do her makeup. I don’t mind her growing up at all. I’m also glad she seems to enjoy many of the same things I do and that we can share those with each other. Then, there are ways in which she is solely her own person. Not I, not Loren, but a new person growing and changing, and becoming someone all her own. I relish it. I am thankful for it.

We, of course, weren’t granted such a happy fate with our youngest daughter. Not only did she die, but we knew she would, which, in the grand scheme of life and parenthood, may have been the cruelest fate of all (for us): living with the knowledge of her impending death at such a young age, and not only that, but before her death was to occur a relentless genetic monster would take away all of her physical and cognitive abilities.

Let me stop right there to make sure that you know that her life was nothing but a blessing to us. Every moment we were allowed to spend with her was a magical time that taught us the importance of unconditional love, and value of our own mortality. And it changed us in ways we’re still discovering only now, four years after her death. Some for the better, some for the broken.

We are strong, it’s true. Sickeningly so. We just don’t want to have to be, that’s the thing. That’s why people who are in our position often hear repeatedly how someone else couldn’t imagine. They just don’t want to. We don’t either, but unlike you, we didn’t have a choice. We hate to hear that you think we’re strong. Especially when we feel anything but. And when you tell us this, you may not realize it, but it often adds undue pressure to our burden. Pressure of an image we feel expected to maintain.

Four years later I know that the choice we had was whether or not to fight this battle together. We chose to do so with each other. And it’s not just that seven years ago, when we were told our daughter was dying that we walked out of the hospital and made a conscious choice to stick together, it’s that we continue to do so each and every day, even now.

Can we just be real? It is not easy. We have problems. Some of the same problems you probably have, but others that whether we would have had or not had we not been through the death of our child is only speculation at this point. The point is, they exist, so what do we do about them?

I think we’ve always tried to be proactive in acknowledging an issue and trying to work through it. I think communication is one of the cornerstones to ours or any marriage. But that doesn’t mean we always practice it. It’s worse when you can’t even put your finger on it yourself. How, then, are you supposed to communicate that to your partner feelings you yourself can’t understand? Especially if it’s something you’re not proud of, or you might even be scared to admit to yourself, let alone anyone else.

We haven’t always been kind to each other, but recently, with both of us separately on the verge of falling apart, we made a change. We both got honest, with ourselves, and with each other. It was a terrifying admission on both of our parts, but also, in some small hopeful way, freeing. A burden began to lift just by admitting our faults, and choosing to do something about them instead of continuing to spiral into oblivion. Neither of us wanted to live the way we were.

To be candid, Loren deals with fits of explosive anger. Deep seeded anger simmering below the surface that began in his childhood, but has been amplified into rage over time by the events of our shared life and the lack of dealing with these existing feelings for so many years. It’s all consuming. It lurks around every corner. It bleeds itself into every aspect of his life and affects his actions and behaviors in an unhealthy manner. No steps can ever be light enough as to not crack those egg shells. It’s something he’s realized cannot be mind-over-mattered through on his own.

I on the other hand have only recently become aware of the anxiety that’s swallowed me up and refuses to release its grip on my mind. In seemingly normal every day occurrences the fear of the what if overtakes my ability to remain calm and collected. To say I worry would be a vast understatement. The need to maintain the upper hand and to constantly reassure myself that everything is okay has turned me into fearful, controlling, unforgiving, judgmental shell of the formerly vibrant person I feel I can no longer recognize. I’m constantly on edge, lashing out, waiting for some other shoe to drop.

He’s become a scapegoat. I can’t admit I’m wrong.

Enough.

Enough trying to be strong.

Enough pretending to be ok.

Enough trying to prove that we are.

Our daughter died, and we are not ok.

It hurts so much.

But we want to get better.

We won’t let this form of grief be our undoing.

Loren has sought out counseling, recently, which has been a life changing experience for him, and for us. He’s gaining the tools to manage his anger, and to work through is feelings in a productive way. I have finally admitted to myself, and to him how swallowed up by fear and anxiety I feel I all the time. Why it is I’m so controlling, how scared I really am. I too, need to address this issue, and I think finding someone to talk to about it and mitigate the feeling would be a good idea for me as well.

We’re not there yet, wherever there is. Though we are getting there. We’re still staying the course. Someone recently asked me when grief goes away. “Never,” I replied. Grief is not a place to pass through and come out on the other side of, but a continual journey once you’ve been set on its path.

I don’t want you to read this and think that we think that we’re so awesome that even when we have an issue we make a spectacle of how awesome we are at working through it. I just hope that if you read this and you have any of these feelings that you can be real with yourself, and maybe even with your partner. I’ve had to learn that there’s no shame in not having it all figured out or under control. The only shame is in letting everything crumble around you without doing something about it. I know you won’t judge us, you can’t. You haven’t lived through our loss. And I want you to know that no one else can judge you, either. So if you read this and you suspect you might be a dark place like we were, please do something about it. It’s a lonely place to be, and I don’t want that for you.

Grief. What’s Next?

When I met Noah Mathew Leos last April at the NTSAD Annual Family Conference in Washington, D.C. his presence was magnetic.  I was captivated by this beautiful child.  His light shone so brightly you couldn’t look away.  His mother and father like so many other parents were, both proud, yet humbled to be in that place with their son.  Surrounded by those with children like theirs, those who understood their life.  It was their first time attending this conference, and I could tell instantly; they were home.

They looked so much like many of the families I’ve seen over the years.  Families like mine.  Their son Tony, was so mature, wise beyond his years, and respectful of everyone.  Little Marina dazzled everyone in her presence with her immense smile and constant dancing about.

These families share an unspeakable bond, and no words need to pass between us to communicate with each other.  We just know.  And one by one, we all must pass through the threshold of loss beyond the daily care routines and constant what ifs into the realm of loss and grief.  When suddenly our know world is sent spiraling into oblivion, we often wonder, what’s next?

Zuraya, Noah’s mother beautifully and eloquently captures the heart of so many mothers of loss.  Our days are upside down.  Our lives are inside out.  Here she gives a small window into her world since Noah’s passing and sheds light on some of the lesser seen personal struggles we endure.

Leos Family

“Today marks 40 days since Noah’s spirit transcended into heaven, following a fatal Juvenile Tay-Sachs Disease diagnosis at the age of 4 ½ years. After discussing prognosis we spent so much time planning what we wanted his future to look like, we never considered we would have to commemorate his life and struggle with such an atrocious monster like Tay-Sachs. The emptiness we feel without the constant care and routine of Noah has been suffocating at best.

As a baby, Noah had some developmental delays, but by the age of two he seemed to be “growing backwards” as his pediatrician would say. Gradually he stopped meeting his milestones altogether and began to physically and cognitively regress. After countless consultations with physicians and specialists, a neurologist discovered Leukodystrophy in Noah’s brain. On November 4th, 2014, we met the mother of all evil when we learned that the Leukodystrophy was the effect of toxic build-up in his brain caused by Tay-Sachs Disease. Slowly we picked up the pieces of our now shattered expectations for Noah’s future and created a list of 50 memorable moments we wanted to share with him. My husband, Hector and I were eager to take on the challenge of giving him a fruitful and inclusive life where he would never feel confined by his physical and mental limitations. Before his passing we managed to check off 27 experiences in the year after his diagnosis date. Quite unexpectedly, on November 1st, 2015, our Noah Mathew Leos passed comfortably and peacefully at home in his sleep.

I wish we held the same fervor for our future as we did Noah’s. Shortly after Noah’s passing his physicians, family, friends and even total strangers approached us about how we would memorialize Noah. We documented his life and how it impacted our family via social media, and to our surprise our Earthly Angel quickly attracted a number of followers. After his passing, immediately we were inundated with what’s next and how will you honor Noah? With great intention, people readily wanted to do something and help contribute in the planning of a memorial for our son.

We were embarrassed to tell people that after the shock of having to arrange Noah’s funeral, we didn’t want the added pressure of planning a celebration of life. Our community was surprised we have no foundation or prodigious tribute established in his honor. We are dumbfounded on how to commemorate Noah’s life and we have no immediate plans for this massive undertaking. We feel we are not only disappointing Noah, but our community as well for blocking their blessings and willingness to help our family during this time of need. Honestly, we simply don’t have the courage to take on such cumbersome task so early in our grieving process, people can be inconsiderate of time when you’re mourning. We feel a constant, insurmountable pressure to appease these requests, and the guilt of not meeting the expectation of our community further aggravates our affliction. Our grief consumes our family physically and emotionally, we regret the task of piecing together a memorial is far too daunting to even consider at the moment.

The Tay-Sachs disease process is gut-wrenching yet Noah managed to smile everyday through his pain. We found grace in his happiness and with every step we kept pushing forward, it seems unfair fabricating an event for the sake of satisfying everyone’s need to want to do something right now. Noah has a six-teen year old brother, Antonio, and four year old sister, Marina, both actively participated in his care and need time for their hearts to heal as well. My husband and I both hurt over the loss of our son, but our hearts are in peace that Noah is no longer being confined by this agonizing disease.

Although Noah’s physical body may have succumbed, we feel his spirit conquered Tay-Sachs and his victory deserves to be celebrated in a memorable way, but at this juncture we want time to reflect on his life until we are ready to honor this momentous occasion. Our mission was to help carry Noah through the threshold of Heaven and we have the rest of our lives to celebrate the lasting impact he made here on Mother Earth. By choice we are not publicly acknowledging this milestone before we are ready to do so and we feel selfish about this. The four of us want the opportunity to remember Noah and celebrate him privately without the sense of urgency we felt when we learned of Noah’s fate. Now, we will take time for us.

Noah passed almost exactly a year later to the day he was diagnosed. Our family wasn’t prepared to lose him so abruptly. No one was. For now, we heal one day at a time and can’t look beyond into the next day, let alone the rest of our lives. We feel completely defeated that we could not find a cure to keep Noah alive. There is a sting of guilt just breathing at times. It is excruciating when as a new family we are out enjoying a sunny day and realize Noah isn’t physically present with us; as if we intentionally forget him. That is the paradox of our bereaved family: Noah has passed us, we are survived and often feel guilty we are still living.

Our bucket list was a tribute to Noah’s endeavor in his fight against Tay – Sachs disease. We want to pay homage to our little man for warming our lives with smiles he gave us despite his pain, for his encouragement, for redirecting our faith and for the timeless memories we will cherish. It is going to take some time for us to organize and think through the details of planning a dedication to him, but one thing is certain- his commemoration will be monumental and impacting, just like his toothy grin.”