Category 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

 

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Adorned In Grief

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

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

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

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

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

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

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

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

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

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

Headstone

The Remnants of a Life

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.

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.”

Three Years Four Months and One Day

Benson 6

That’s what June fourth will be this year.  Three years, four months, and one day since Miss Elliott died.  Which also marks one more day than she was alive on earth.  She will now, and forevermore have been gone longer than she ever was here.

It’s hard for me to stomach.  Hard to accept as a mother that my child is gone from this life forever.  The more time passes the more surreal it becomes.  Sometimes I conjure up memories of our life with her and they seem like they should belong to someone else.  Being in the throws of her life, consumed with the medical fragility of her tiny body and the severity of her condition was life as we knew it, but now, having been so far removed from that life for so long that in many ways, although it still feels like yesterday, in others I can’t recognize it at all.

And the nightmares I have because of her death still haunt me today.  For some reason my brain has decided to manifest completely unnecessary and inaccurate guilt associated with her life, and my care for her as a mother.   I dream repeatedly of her existing somewhere in the background of our lives and I have forgotten about her.  Forgotten to feed her.  She is starving.  She is sad.  She is lonely.  She is silent.  And she can’t do anything about any of it.  I fail her over and over in these dreams.

The truth is that in her lifetime I was never without her. She lived cradled in my arms.  I fed her five times a day.  I massaged her arms and legs to help her circulation.  I bent and stretched them to keep her muscles fluid.  I bathed and dressed her every day complete with a matching bow in her hair.   I sang to her.  I took her everywhere with me.  I loved her fully, and unconditionally until the day she died.  And I love her still.

I think these dreams come to me as a symptom of my guilt over her death.  As powerless as I was to stop Tay-Sachs Disease from ravaging her body, and as certain as her future was, I still, as a mother, could not accept that my child would die.  Of course, logically, I did understand it and knew it would happen.  But in my heart, the acceptance of this hard-fast fact has never come to be.

When we wrong our children, when we fail them we’re usually given the chance to explain or make it right at a later date.  With Miss Elliott gone, I do not and will not ever have the opportunity to do so.  So many times my worry takes over and leads to the entrapment of guilt.  Guilt that what if I didn’t feed her enough, hold her enough, massage and stimulate her muscles enough?  Was she hot when I was putting a blanket on her?  Cold when I was taking one off?  I will never have these answers.  Only wonder and only worry.    I’ll never have an opportunity to right my wrongs or do better for her.

The day before Miss Elliott was born I looked at Skylar and said “It will never be just you and me again after tomorrow”.  How I hate the thought of the false security of this statement now.

When I look back on the memories of the years she was with us sometimes I don’t recognize those people.  They seem so foreign.  And it saddens me until I remember all that who we are today is because of who she was.  She was a little girl with a perfect soul and a big message about the beauty and importance of every life, no matter how short, no matter how small.  I will be forever grateful to have been her mother for the three short  years she was here.