Tag Archives: Motherhood

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

Love Them and Let Them Grow

“If I know Becky,” my dad says, “she’s going to spend the next two weeks saying to herself, ‘Is she ok?  Is she having a good time?  Is everything going alright’?  She needs me!  And if I know Skylar,” he continues, “she’ll just be having a great time, being the life of the party, leading everyone around.”

He’s right.  On both accounts.

It’s day one of her two weeks at sleep away camp.  I miss her.  I was on the verge of tears last night as she’s never been away from home this long.  I am thinking all those things my dad said I would think.  I’m also wondering how I get through these two weeks without her.  I always do.  I’m a worrier.  More accurately, I’m a planner.  I like things orderly and under control.  I like to be able to anticipate the next move.

One common theme I hear from many parents who have lost a child is that they don’t sweat the small stuff anymore.  Problems no longer seem so big, so daunting.  Not after the unimaginable loss they’ve suffered.  I wish I could say that was the case for me, but conversely, it had just seemed to make me into someone who now finds themselves acting neurotic.  Suddenly everything seems to be an issue.  Little things feel like big things.  I struggle to keep every moving part in its place.  I want consistency.

Some parents of child loss have told me that they actually find they are distancing themselves from their children.  It’s a psychological need to guard their hearts.  Hearts that can’t handle another loss like the one they’ve already suffered.  A preemptive attempt to soften any oncoming blows.

I understand this thought process. My reaction after the loss of our Miss Elliott, however has been to grip everything tighter.  To hold on a little longer.  To savor every second, even after it’s gone.  Feeble, I know, but nonetheless, if I could will time to stop I would never let another second tick by.  I’d live in this current moment forever.

The struggle is to find balance.  I haven’t (yet) let the neuroticism take over.  I actively try to make sure that I’m allowing her to grow and thrive, and experience life on her own terms…well, sort of.  Evaluating every day to ask myself; was I too strict, too permissive, etc.  What’s the magic formula?

My husband tells me it’s the worry that let’s you know you’re a good mother, because really, when you break it down, worrying (within reason) just means you care.

First Day

First day of kindergarten, eight years ago.  Ready to take on the world from day-one.

 

She’s strong and outgoing, and like my dad said, she’ll probably be running the place by the time the week is out. We joked that there’ll be no tearful phone calls home in the middle of the night asking us to come pick her up.  And I’m proud.  Proud of her strong will, gumption, and tenacity.  Proud of her unbroken spirit, outspoken opinions, and every-present resiliency.

After the summer she’ll be going into eighth grade.  I only have one more year until she’s in high school.  How did it happen?  Where did the time go?

The most important lesson my parents have taught me that carries over into my own parenthood is just to “love them”.  In the end it’s the only thing you really do have control over.  Just love them, and let them grow.

 

 

Better Than Me

“She’s beautiful!” they tell me.  And I know she is, not just in my eyes, but by all conventional American standards, she is.  Chestnut eyes, straight nose, high cheekbones, supple lips, long flowing dark, but sun-kissed hair, and easily tanned skin.  She’s gorgeous.

“She’s a mini you, gorgeous like her mommy”, they say.

“Daddy’s got his work cut out for him,” they continue.

“Hope he carries a bat”, it goes on.

And it’s fine. I beam with pride at the shallow, and ultimately meaningless compliments, like any other mother would.  But she’s so much more than that.  And that’s the true, total package.  She works hard, brings home straight A report cards.  Is artistic, and creative, and thinks outside the box.  She’s a friend to everyone, caring, compassionate, and thoughtful.  Easy going, quick to lend a hand…obviously I could go on and on.

Skylar

Skylar, Age 11

My point is, that I relish it as my own success.  As a mother, I want nothing more than the best for her and for her to be the best, at everything.  I’ve never understood the theory that mothers and daughters clash because once a daughter comes along the focus is suddenly taken off of the women who had it on her since childhood.  Essentially that her mini-replacement has come along and she’s no longer the star of the show.

What?!  As a mother I truly don’t understand this.  And I think if you feel that way, you probably shouldn’t have had children at all, at least not in this stage of your life because it seems to me that if you aren’t able to put them before yourself you can’t have their best interest at heart.  I want my daughter to be prettier than me, stronger than me, smarter than me, and more successful.  I want her to have it ALL.

“I’ll bet she looks just like you at that age, Becky”, someone recently told me.  Ha!  She couldn’t have been more wrong.  I was gawky with no style,  big glasses, and a bad perm.  No, my daughter seems to have not had to endure the same awkward phase that plagued me from the ages of eight to fifteen.

Me Age 10

Me, age 10 with mid 90’s
style choker and Seinfeld Puffy Shirt.

Conversely, I’ve also endured comments related to my daughter’s looks as more of a consolation prize rather than a compliment.  When Miss Elliott was alive, I distinctly remember one person, upon learning of her terminal status remarked , “Well she sure is pretty, and you can love her anyway”.

WTF?

I mean, thank goodness she was pretty too, right…or there would be no reason to love my dying child as I love my heathy one.

photo 1

Miss Elliott, age 3 years 3 1/2 months

Okay, I know people don’t mean the stupid things they say to sound so ridiculously degrading, but honestly it’s so tiring that sometimes I would rather they just stay silent.  And if they simply can’t muster up that ability and feel compelled to have to say something, let it be a simple I’m sorry.

I know you can’t imagine.  I know you don’t know how I do it.  I know (insert your own meaningless platitude here), but none of it matters or changes the situation.  A simple I’m sorry, is really the only thing of value you have to give me anyway.

And for the record, Miss Elliott was pretty.  She had bright green eyes, milky smooth skin and hair far lighter than I could have ever imagined any of my children being born with (all three thanks to her Daddy’s Irish ancestry).  And I loved the hell out of her.  I still do.

And I wanted better for her, too.  Better than for me.  And do you know what?  She got it.  She knew nothing in her Three Short Years but unconditional love.  She never endured pain, rejection, or abuse.  She lived and died a perfect being with a pure soul.

These things, more than just our little girls being pretty should be what we celebrate as accomplishments in parenthood, and life.

 

 

 

 

 

 

 

 

Memories of a Lifelong Crusade

Memories tend to spring up in unexpected places.

Some recent remodeling lead 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.

A Fixable Faux Pas

As a mother, there’s not enough bubble wrap in the world for my liking.  If I could have an infinite supply to wrap my daughter in for the duration of her (very long, and very happy, I hope) life, of course I would.  Like I said, I’m a mother.  Such is not reality.  And in any case, I am aware of how that would prevent her from having as many good experiences as it would cushion the bad, I would assume.  There’s never an easy way to find the right balance of letting go and letting grow, to protection and inadvertent smothering as a parent.

Three weeks ago a call came from my sixth grader’s school that she had tripped and fallen in PE while playing soccer.  The teacher had helped her up, dizzy and pale.  Realizing there was something to be concerned about given her reaction he lead her, slowly, up to the nurse’s office and immediately called me at home.

As I sped through the neighborhood at Mach Ten, daring someone to glare, gesture, or any police officer to pull me over, I was there practically before I had hung up the phone.  My girl is a trooper.  She never cries or complains, to the point that when she was younger we would have to tell her that it was okay not to be okay, and she needed to let us know so that we could help.  A hard-headed quality that she comes by honestly.  And she’s resilient. Thanks in no small part to her sister’s terminal illness and death.

That, of course is something that I never expected her to have to endure.  Something that has most certainly shaped her young life in myriad ways, and will remain with her forever.  Haven’t we all found our children’s childhood’s shaped by unseen factors that we never planned for and most certainly hoped to avoid?  But alas, steel is only tempered by fire.  Most parents of children who have passed seem to feel a heightened level of fear, be it rational or irrational, over the loss of their other children.  That’s not so far reaching, if you ask me, merely a product of our experiences.

A trip to the sports medicine clinic, a few X-Rays, (broken radius) and a nice purple cast later we were on our way.  It was a clean break, and a routine set.  Everything was right on track, until two weeks later when another X-Ray showed the bone veering off course and not reattaching correctly.  We were informed then that the next step would be surgery.

I may have been in actual shock to hear this and the wheels began spinning in my head.  I was upset.  Terrified, and thoughts of doctor’s offices, bad news, and hospital visits with Miss Elliott flooded my memory.  We had had enough of all that to last a life time, but not with Skylar.  She was my healthy child.  I tried my best to remain calm in front of her.  I didn’t want to further upset her with my own hysteria, and I needed to rein it in for my sanity’s sake as well.

Two days later at six am we were in the hospital prepping for surgery.  I was nervous of her undergoing general anesthesia, as she never had before.  She had never had anything wrong before, ever.  I tired to hide my tears as they wheeled her back, IV in her arm, swimming in the hospital gown they put on her, and walked out to the waiting room.

I had brought a book, although I knew I couldn’t focus long enough to read a single sentence the moment I took a seat.  She was now a color coded number on a monitor in the corner of the room, to which my eyes were fixed.  It would tell me when she left the surgical prep room for the OR, and then once she was moved to recovery.  I watched that screen like a hawk.  Shaking with nervousness so profusely that a receptionist mistook my jitters for being cold came over to offer me a blanket.

In just thirty minutes, that felt like nothing short of an eternity, she was already being wheeled into recovery and the nurse was calling me back as she was waking up.  A new blue full-arm cast encasing three pins now covered her newly set arm.  Awake

She was groggy and in pain, but she was ok.  As another Tay-Sachs mom put it, “Hope she feels better soon, sad for her but happy for you as a mom she has something fixable”.

I was certainly thankful for fixable, too.

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.”