Strength | Three Short Years Blog

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 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.”

Time is slipping. I’m not really sure how it can move at such an accelerated rate, yet seem to progress so slowly all at once, but it does. It moves on its own accord. You can’t alter it. You may try, but only in vain. Earlier this month, August 6^th to be exact, I was tidying up the house for the evening, sipping some coffee, and heading up to bed-book in hand, to read for a bit, when suddenly a thought hit my like a truck: yesterday was DD. YESTERDAY. For the first time in six years, since its inception, I had missed it.

This was a win.

Diagnosis Day (DD) is when my world fell apart. It was when I learned our precious Miss Elliott was being consumed from the inside out by the ravenous genetic monster known as Tay-Sachs disease that, while first would rob her of every basic form of human functioning, it would also eventually kill her as well. August 5^th, 2009 was the day our world stopped. This was the point of no return. At that moment, I would never be who I had been for the entirety of my life pervious to this point, ever again. A change had occurred. I was a new person, in a new life, living a bad dream called Reality.

For years, even since her death, I’ve dealt with the grief and anxiety of that day preemptively as it approaches. It’s like watching your life on an old movie projector. Jagged scenes flash intermittently into your memories and the feelings behind them are so real they’re palpable. You wish you could look away, but you can’t so you squint through half-closed eyes between your fingers instead and try to take in as little as you can handle at a time. Knowing you’ve survived it already doesn’t make it any easier to see again.

This year it didn’t happen. I missed it, completely. I was ecstatic. Grief didn’t consume me in the days leading up to August 5^th. Normal life did. I was happy to feel that way, normal. Happy not to feel I had been gulping water instead of air. Happy not to feel the days ticking off the calendar just to get through them. Happy because I had been feeling this way a lot recently. It was energizing, reinvigorating.

I haven’t felt like myself in a long time. I’m tired, irritable, overwhelmed, stressed out. And it’s not me. Could I be anemic, have trouble with my thyroid, something else, I wondered. A visit to the doctor and quick blood draw tells me I couldn’t be healthier. My levels of everything couldn’t have been more precisely in the middle of the normal range…on everything. Great.

So what then?

Being a mom is hard. Being a wife is hard. Being a daughter, daughter-in-law, sister, aunt, friend, coworker, Christian, etc. is hard. I’m hard on myself. I expect a lot out of me. I absorb all the stress like a sponge. I expect to keep going, keep moving forward gliding along so gracefully that no one can see my feet paddling furiously below the surface. I put a lot of pressure on myself to make everyone else feel happy by being polite, sucking up their crap, putting my own thoughts and feelings aside to seem agreeable, showing up for everything, saying yes to it all, entertaining delightfully in a spotless home, all with a freshly baked pie and compliment ready to offer up to the next person I interact with. And all I’ve succeeded in doing is feeling like I’m losing myself for everyone else’s gain.

Losing Miss Elliott was hard. It still is hard. And when you feel like you have this image of I’m doing great to uphold, it’s the kind of pressure that builds up until the final straw drifts down on top of you and you break.

In talking this out with one of my few closely trusted friends she sent me a message that I really needed to hear:

“You know, you don’t have to be “strong” and no one expects you to be. You get to freak out, cry, scream, be sad and be pissed off. It’s your love for your family that keeps you moving forward, not strength. I think people confuse strength with determination. You are determined to live your life and carry on for Elliott, Skylar, and Loren. You are choosing to move forward out of love for your family and you do it with such grace. That’s not being strong. That’s being a mother. That’s being a wife. That’s being you.”

I needed that so much. She wouldn’t see me as less valuable if I had a less than stellar moment. Why should I see myself that way? What I don’t need is to try to live up to a false sense of strength that’s my own creation. It’s exhausting, it’s stressful and eventually, you’ll break. I couldn’t be further from perfect. I need to do a better job accepting that. I think everyone else would accept that of me, but somehow it’s harder to come by that acceptance of myself so I’m working on it. I’m taking care of me. Of my body, of my mind. I’m letting go of the hold that all those old obligations had on me. Of all the expectations that I’ve felt like were there from others, and imposed on me by myself. Of my difficult relationship with grief.

A date on the calendar doesn’t have to rule my emotional well-being. August 5^th came and went without so much an acknowledgement of it. I miss Miss Elliott every day. I will always be sad over her loss. It will most likely always be hard for me to deal with, but like my friend said, and even if I stumble, have set backs, or don’t always handle everything as gracefully as I should, I “choose to move forward out of love for my family”, “That’s being me”, and I’m determined to carry on.