I tattooed her name on the back on my brain
but it was painted on my lips all along
Elliott forever, Elliott always.
I tattooed her name on the back on my brain
but it was painted on my lips all along
Elliott forever, Elliott always.
The dark does not my steps impede
Your memory, now the guiding light through my crucible
My drive, steeled by the absence of your beating heart
to seek out a world of love and hope
They must connect;
future born of past
in order to become new
To rise after the fall
To toil evermore
Reaping for all mankind
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.
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.
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.
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.”
“Because we have ‘only’ children”, she said. I can’t remember my response now. I’m sure it was something pleasant and agreeable, but in my head I was shouting that I don’t have an ‘only’ child. I have two children. And yet, the fact remains that my not-only child, is still, in many ways forced to grow up like one. After all, she is the only child currently living in our household. But in her heart, she knows she has a sister.
What a strange way to go through childhood; knowing you have a sibling, even remembering them, but not sharing in the sibling life together. Is it what children who find out they have half siblings somewhere, or come to know of another sibling given away for adoption before they were born feel? I don’t know. All I can know is that in our house, our oldest daughter, may be our only living daughter, but she’s not our only daughter.
Even as the mother of two girls, I’ll never know what it’s like to parent them together, in the conventional sense, anyway. We were blessed to have three years and four months where our two girls shared their early lives together, but even then we didn’t have a typical lifestyle. There was no fighting, no crying over unshared toys, no complaining about the other when one didn’t get her way. And while I longed for the normalcy of that life, I still cherished the one I had. It may not have been ‘normal’ at all, but to our oldest daughter, it was. It was all she had ever known.
There may not have been moments of playing dolls, or blowing bubbles together, but there was holding hands, and reading stories, and so, so much more that made our children’s lives wonderful. Even in our youngest daughter’s death, a sense of joy and peace was present in my ever-so-resilient older daughter. A gentle understanding that our sadness was all for us, and not for her younger sister who was now free from the earthly constraints of her immobile body and mind.
I see a lifetime’s worth of compassion and tenderness bestowed on her. I see tolerance, and understanding. I see acceptance, and most of all, I see an immense amount of love.
When I hear or read of ‘typical’ mothers complaining over the blessings in their lives I become ruefully angry with them. I want to shake them and tell them to stop. To get a grip. To woman up, so-to-peak. This is not to say we don’t all complain over ridiculous ‘first world problems’ in our society and culture from time to time, and yes, we all ‘vent’ once in a while too, but when it comes to complaining about your very children for being just that – children, especially the ones you have planned for, prayed, for, wanted more than anything who are happy and healthy my acceptance and tolerance level dips dramatically. How dare you.
Narratives that sound like, ‘no sleep, so tired, two kids at once, changing diapers, spit-up food, just need a break, etc…’ frustrate me immensely.
What I would have given to have those ‘problems’. Mine sounded more like, ‘seizures, choking, inability to chew or swallow, medication administration, can’t sit or lift head, can see, can’t think, PT, OT, neurology appointments, etc.’, and the part that really gets to me the most is never did I complain about my child’s life. I would beg for years of sleepless nights just to have ten more seconds to see her and hold her in my arms again.
This is my hindrance. My own bias, and personal issue. I get that. And would I have been one of the women complaining about my ordinary everyday life had I not had the experience of living with a severely handicapped and terminally ill child? I very well may have. It’s just that now I know better. And all I can do is be thankful that in the end those other mothers have no idea. Their children will grow out of sleepless nights and diapers. They will become little people who do the usual little people things. They will fight with their siblings, and go to each other’s ballet recitals and soccer games. And here in our life we and our not ‘only’ daughter will carry on, as she plays alone, not sharing toys or splitting Christmas gifts, the unbroken focus of our attention, just the three of us, holding the memory of the time when there were two, when we were four.
In just a few weeks I will celebrate the one year anniversary of this blog, but before that there will come the third anniversary of Miss Elliott’s passing, and this week itself, my twelfth wedding anniversary.
Last night Skylar found out our anniversary is this week and she decided she wanted to throw us a surprise anniversary party. She’s ten years old though and needed my help to put some things together so she said it will really just be a surprise mostly for dad. She took paper cups and plates and wrote “12 Wonderful Years” across them. I laughed to myself. I couldn’t help but be happy that this is how she saw (ten of) those twelve years, after all, we’ve certainly had some challenging times along the way, but in her mind the love outweighed the sadness.
The picture at the top of the page is a painting I did a couple of years ago. I call it the Return of Beauty. This painting represents the beautiful life of a child gone too soon. What may seem dark and chaotic to others is to me, wonderfully unique and serene, not in the child’s absences, but because she first existed there at all. The raven is attempting to return the life that has passed on, hence the bleeding heart. Many cultures believe that ravens steal the souls of children and that if you catch one you can return it to earth. At the center of this painting is the vibrancy of the heart in contrast to the monotone background. The heart is bleeding because the child’s life could not be returned. It’s now in a sad state and only the memories of the once vibrant soul remain in the cold, bleak, lonely world.
In looking back and thinking ahead I wanted to re-share the first post I ever made on Three Short Years Blog. It’s a post that seems fitting for recollections of many kinds, and thus demonstrates the powers of love in regard to anniversaries of marriage and death, both on the horizon for me in the coming week.
I read an article recently posted by a friend that made reference to the romantic intoxication of letter writing as a form of courtship. This peaked my interest and conjured up feelings of my own nostalgia, as I am still in possession of the enormous stack of love letters my husband wrote to me the entire second year of our courtship. We were only teenagers at the time. He lived three hours away and sent, on average, one letter per week. With no internet access between the two of us back then, and very limited availability for phone contact, these letters were our connection to each other.
He was away training to become a wild land firefighter with the U.S. Forest Service. His days were spent on the smoldering mountain tops of Washington State with a Pulaski and chainsaw. Dressed in his government issued green and yellow FR gear, battling the heat of the sun and the tempers of the crew members, as well as the fire itself. I was a senior in high school and just trying to finish up this last year of my childhood, all while dreaming of my life as an adult. My heart was most definitely growing fonder in his absence upon every arrival of his next letter. Every day I expected one to come, I would practically skip to the mailbox in anticipation, as giddy as a school girl, because, that’s exactly what I was. To open the mailbox and find another shining new and private treasure was always accompanied by an elation that nothing else in the rest of my world could compare to. We kept up our letter writing, seeing each other on average, one too-short weekend a month, kissing our good-byes, hand in hand, at the train station and holding on to each other as long as we could.
At the end of that year I graduated high school, he finished his training, and came home. In the next year we were married and began our life together. We moved to the rural town where he would serve the Forest Service and fight fire during the summers. I began working at the local hospital. A year into our marriage I became pregnant with our first daughter. Having experienced, by this point in life the love one has as a child for their own naturally born family, followed by the sultry, all consuming, intoxication of romantic love, I was now beginning a journey that would lead me to know the intimacy of motherly love fist-hand as well.
When our oldest daughter was born it was yet another new high that had no comparison to any of the other experiences in life I had had thus far. The second she was placed on my belly, I knew that for this tiny being, red, scrunched, and crying, I would lay down my life, here and now, and would do anything to make hers as wonderful as it could be throughout the extent of mine. My heart didn’t feel capable to both exist within my own body, yet be large enough to encompass the oceans of the earth, yet that grand form of measurement was the capacity of my love for her. The oceans, the lands, the universes, there was no end. I was an entirely new being myself in her birth. Never again would a single day of my life be lived with myself as my first consideration. I thought my heart may very well beat right out of my chest.
A mother’s love is something that, although one can logically understand, one cannot truly know the feeling and the weight of the emotion unless they have experienced it for themselves. When I was pregnant with our second daughter, four years later, I thought I truly knew all that a mother’s love could encompass.
Possibly the most primal form of love that exists is that of desire of protection of one’s own flesh and blood. What good is a love story if at one point or another that heart, capable of containing all the stars in all the galaxies, isn’t broken into a million tiny pieces? To understand the full circle of what love is, it is necessary to also experience the desolation of the elation the idea of it once brought.
My pregnancies were perfect, easy, ideal. Knowing that we were expanding our family from three to four was a joy all it’s own. The love you have for your child can never be divided amongst another. A new supply is created for that child and the love that springs forth for each of them will never come from the same reservoir. They occupy separate, but equal parts of your heart, with your heart being made fuller in the mere presence of their existence.
With a new child comes a new idea and expectation of life itself. What will that life now look like, sound like, feel like, etcetera. When something in your perfect plan doesn’t unfold the way you’d imagined, it can derail you before you ever saw it coming. Being told that our precious ten month old child was terminally ill with a rare genetic condition for which there is no treatment, and is always fatal, hit me like a freight train, and I hadn’t even known I was standing on the tracks.
I was destitute. I couldn’t even see the pieces of my life to know how to being picking them up. What would I do with them once I had collected them anyway? They couldn’t be glued back together, and even if they could, they would never again resemble the life I had once held. That feeling of the willingness to lay down your life for your child came roaring back at me, only this time with the knowledge that even to do so wouldn’t help. I would only wish I could lay down my life for her. I would have done anything to fix this for her, to save her, to make it not so. No amount of money, or power, or fame held the answer. She was beyond worldly salvation. Despair is a hole filled with quicksand. The more you struggle with it, the deeper immersed in it you become. You cannot know the feelings of desolate helplessness in watching your child die, had you not first known the monumental joy brought about by the love of being that child’s mother.
In the end, the same love your heart conjured in the beginning, is ever present, no matter the current form it takes. It will wax and wan, pulse, and transform over and over again, but it remains with you, nonetheless. Thankfully, for the compassion of my family, friends, my husband, and our daughter, and the focus of our love for one another, we were able to walk through this process and come out hand in hand, on the other side. We will never be who we were before, love has changed us all, and because of each other we still have the capacity to continue to love today.
We are rapidly approaching the time when it will have been three long years since our precious Miss Elliott passed away. A scant four months later and then we will forever enter into that tragic time period that we will live in for the rest of our lives; the one in which she will have been gone longer than she ever was here.
I worry about that time. I worry about her memory. To so many people that I meet she is now only a story, and idea, if even a remembrance, but not a living person known unto them. She is alive in my heart and soul. She is imprinted onto my being. I vow to spend the rest of my days spreading her message in her stead about the beauty, value, and importance of every life, no matter how short, no matter how small.
“Serenely I could while away the hours. Stay in contentedness with her forever, just staring at her beauty, stroking her face, holding her head and massaging her hands and feet. This was our life, the one we share. It didn’t look exceptionally pretty to others. It was expensive, but not fancy, cumbersome, and not at all convenient, imposing and difficult. No one coveted it. I kept it close, as close as I could, for as long as I could. No matter how unattractive this life was to others, it was mine and it was my most prized possession.”
-excerpt from Three Short Years: Life Lessons in the Death of my Child
It’s been just over a year since I published Miss Elliott’s book. I sincerely hope that everyone who reads it takes her message to heart and learns some of the many lessons she bestowed on us with her presence while she was here. She taught me so much about life itself. I am eternally grateful to have had the opportunity to be her mother.
To get your copy of Three Short Years, and learn more about Miss Elliott’s life and our journey with her, click here: