Fear | 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.”

Since we’ve returned from the NTSAD Annual Family Conference several children in our community have lost their battle with these devastating diseases. It’s oddly unsettling how these events; diagnoses as well as deaths, seem to occur in cluster form. Beginnings and endings. As is the circle of life itself, such is life as part of the rare disease community. When you’re dealing with diseases that only allow for a few years as a total life-span, unfortunately, this process is exacerbated immensely.

A little over a week ago, aside from the phone call and messages I sent via email, I ventured out specifically to purchase a card to mail to a family who lost their special little girl. She was just three years old. The same as Miss Elliott. She was her family’s world. Suddenly, the life they had known and were so focused on cultivating and maintaining, with a rigorous feeding and medication schedule, positioning and comfort care, as well as every attempt possible at memory making was gone. Just like that. Now her family has to adjust their routine to suddenly allow for the “freedom” (terrible word, as if their loved one had been a shackle), that they most likely do not want the luxury of having. This young girl’s older brother, the only other child in the family, will now be forced to live life not as an only child, but as the only living child, just like Skylar has had to do. Not what his mother had planned or wanted for him at all.

As the days passed and I had trouble knowing what paltry sentiment to express in the card, as nothing can do comforting justice to the loss they’ve experienced, and then missing the mail truck over and over, too much time had passed and at that point it would have seemed like more of an afterthought, so I never sent it. A good intention, but we all know what road is earnestly paved with those. The worst part of not sending this card was tucking it away in my drawer for future use. What a truly horrific thought. I already know that at some point yet another child will die and this card for sympathy in the loss of a daughter will be queued up for use once more.

Shortly after this child had passed, another took a steep turn health wise and suffered that same terrible fate. These precious, perfect children fight so valiantly, and yet the end is the same for all.

As if living through you’re child’s life and death as a very medically fragile, terminally ill person isn’t disturbing enough, a sort of secondary effect, or phenomenon of happenstance seems to occur with many of the parents like myself. At first, when your child is diagnosed with a terminal illness and you’re able to gain your bearings enough to carry on, you may experience some level of acceptance. Whether you want to or not, there’s no altering the course of your path so acceptance may come your way begrudgingly, but you have no choice in the matter. You decide you don’t like this, you hate it, but you’re paying your dues here, and as such are absolved of any future debt. The problem is: it isn’t true. You’re not in the clear to side-step cancer, car accidents, or any of the other atrocities of life. Once you realize you cannot control the future, even after suffering the world’s worst heartache, you’re back at square one, except you’re not. You’re worse off because now you live with the paralyzing fear that something will happen to your other child(ren) as well.

It seems that most mother’s in my position, those who have experienced the death of a child, all suffer from this phenomenal amount of fear that reigns over their lives and causes them to hover over their children’s every move. These fears are indeed paralyzing. A restriction from a typically functioning life, if you will. I can barely stand to let Skylar out of my sight. On play dates and sleepovers I’ll call the parents to ask if she’s “behaving herself”, when really the reason for the inquiry is to have confirmation of her wellbeing. I find myself not wanting to take her into crowds or even simpler places, such as the roller skating rink she so often begs to patronize (too hard to keep an eye out as she circles ’round and ’round). It’s unnecessary and controlling, logically I know this, but emotionally, I can’t help myself. No one ever, ever thinks they can get through losing a child. Once you’ve been forced to, you know you can, but you never, never want to have to prove your capacity for strength and resilience regarding one of your children ever again. You try as hard as you can to surround yourself in your own protective bubble and never leave its perimeter.

As the clustering of terrible news in our community continues, I learned that one of my dear friends, across the pond, as they would say, who has already suffered that unimaginable loss, was suddenly struck with another paralyzing blow. Her healthy older son, her only other child, was diagnosed with bone cancer. I read this information as it came across the newsfeed of my phone and my heart sank. It sank for my friend, but also for me. This was an incredibly selfish feeling to have, but I couldn’t help myself. My fear took over and my mind turned to my Skylar. I broke down and cried for my friend and the position she’d been put in. I cried at the thought of being her. The worst of what she said about it was that she had to explain to her son what was happening to him. The shock of such a notion. No one should ever have to entertain this thought. No one has to explain to our affected children that they have Tay-sachs, Sandhoffs, GM-1, or any of the other allied diseases. She now had the daunting task of telling her fully cognizant child what exactly he was facing. The definition of agony as a parent.

How does one do this? How does one find the courage to keep going, day by day, not only for themselves, but for their child as well? A Dragon Mother has no choice. A Dragon Mother puts her children first, every step of the way, and while she may be stressed, exhausted, worried, or completely broken down, she keeps moving along seamlessly because the protective all-enduring love she has for her child is a spring with an endless flow.

Dragon Mom: a term coined by my friend, Emily Rapp, the mother of a child with Tay-Sachs herself.

“We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high.”

The mothers and fathers in my community are all Dragon Parents. We know that most outsiders are afraid of us, or rather, of becoming one of us. The thought alone is usually unsettling enough to keep them at bay. It makes it increasingly more difficult as time goes on to associate with those outside of our dragon’s lair, but matters to us none in the least. All that matter’s, at every turn, is our children’s here and now. This is the only thing we can concern ourselves with. We will fight for them with every ounce of our being. We will absorb the fear and frustration, the discouragement and pettiness of the rest of the world, and we will exude only love, in it’s purest form toward them. A mother’s love trumps all. Our bodies have at one time, miraculously consisted of two hearts, and our children are the only ones who know the sound of the beats of ours from the inside as well as out. Every beat of my heart is a call out to my children, and the beats of theirs, the echo back.

You can read Emily Rapp’s article, “Notes From a Dragon Mom”, here:
http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=0