The Unimaginable

No one ever told me that grief felt so like fear.

-C.S. Lewis

To describe how it feels to learn your child’s death is imminent is far beyond my abilities. To say that it completely alters the fabric of your being and your perceptions is a clumsy understatement. To live with the knowledge that there’s an immense possibility that you will exist without your child is inconceivable. But it’s important that I try to describe it. Not just for myself, but for the many parents who live with this burden.

I didn’t really accept the full implications of India’s prognosis until Mark and I visited Roger’s House this spring. (For those outside Ottawa, Roger’s House offers respite, palliative care and end of life care for children and teenagers and is located just a minute’s walk outside The Children’s Hospital of Eastern Ontario.) The day we went there, the house was quiet, but I later found out this was unusual. Nevertheless I remember feeling as though I should whisper. As we entered we were greeted by a friendly receptionist who led us to a family area that featured a spacious kitchen with all the mod cons. The room reminded me of a show room in a model home or a funeral home lounge.  As someone who’s spent a lot of time in theatres, I understood a great deal of effort had been made to create a comfortable atmosphere. Perhaps because of this I felt a surge of fear. The receptionist gave us coffee in large blue mugs. While we waited for the doctor and nurse in charge of the meeting, I watched a woman cooking in the kitchen, trying to decide whether she was a volunteer or a parent. Everywhere I looked there seemed to be boxes of Kleenex.

At length we were joined by the doctor and nurse. The meeting didn’t start off well. They didn’t know why we were there and assumed it was to make a plan for respite care. The doctor had only glanced at India’s file so we were asked to give him a summation of her illness and prognosis. I always find this an ordeal. It never stops being painful. Finally, the doctor approached the idea of end of life care.  He was kind but it bothered me he used the word story as a euphemism for death. I recall him saying something like “when the time comes your family will be able to choose the ending of India’s story”. As a writer I felt this statement was questionable. When I write a story I decide how it ends. If I were to write India’s story I could control every aspect of it, settle on a happy ending, where she’s cured and runs off to travel Asia with the guy of her dreams. In reality I’m powerless. I can’t change the progression of her disease and I certainly won’t be able to fight death’s hold.

To be fair, there are many people who prefer euphemisms. And I’m aware the doctor’s job is not an easy one and that he’s doing his best. On the other hand, this field of medicine is his speciality and he’s chosen to devote himself to it. Mark and I by contrast, are definitely not there by choice. Perhaps his hope is by discussing death in this manner people are persuaded that they have some control. I don’t know. I’m sure there are those who find this comforting but it made me feel manipulated. Sometime during the interview I began to cry. I remember being handed the Kleenex box by the nurse.

The doctor excused himself and the nurse took us on the tour. She was more emotionally available. Several times I was comforted by remarks she made. In particular, I remember her stroking my shoulder and saying, “This is not the way it’s supposed to be, is it?”

The rest of the house was more colourful than the lounge. Artwork by patients covered the hall walls. Though I couldn’t help but wonder how many of the young artists were now deceased. A cheerful girl of about two was playing with a volunteer in the playroom. I remember looking at her thinking, no, not her as well… This started me crying again. I couldn’t help but think of India at this age, how she was constantly climbing everything.

Upstairs we looked at the bedrooms. Some were designed for teenagers and groups of kids, others had kitchenettes for families. Everywhere I looked there were play-stations and DVD’s. There was a nurse’s station in the centre of the hallway. A mother passed us carrying a baby in her arms. Once more I found myself worrying why they were there.

We made our good-byes and headed across the parking lot towards CHEO to meet India’s neurologist. The May sky was very blue. Suddenly my legs started to wobble and I thought I was going to fall on my knees. The physicality of my sadness surprised me. I’d never believed those scenes in movies when people fell to their knees in grief. I began to sob loudly and gulp for breath Eventually with Mark’s help I pulled myself together. I crept to the hospital like an old lady because I couldn’t manage my regular pace.

The realization that I was grieving began that day. I think it was being forced to imagine the intimate details of my daughter’s death.  Even if I were to wake up tomorrow and learn that India could be cured that day would forever be etched in my cells. Since then my pain has become physical. Frequently I feel as though God, or at least, that God of my childhood, the old man with the white beard, has reached his hands into my chest and is slowly pressing down on my lungs. The weight is unbearable. As if everything I own has been piled on top of me. I wonder how one can be so empty and heavy at the same time.

I understand people don’t always know what to say to me. Several friends have told me they’re terrified of saying the wrong thing and accidentally hurting me. Hell, I don’t even know what to say to myself. Often I can’t even believe it. How did I go from watching my daughter fence to holding her hand during a terrifying hallucination? Like the tight rope walker, Nik Wallenda staring down at the furious water of Niagara Falls, I’m cloaked in mist, only able to concentrate on one slow step at the time. I don’t dare look down.

Generally I try to concentrate on the intention behind people’s words. Though platitudes can be tiring. They may be well-meaning but often they’re simply not true. Not long ago, an acquaintance said to me, “God gives us the children we deserve.” I didn’t know how to respond. In the end, I just nodded. I’ve been alive long enough to know there are just situations that are hard to emotionally navigate and that people can only do their best. If someone is sincere in what they say I can overlook any accidental faux pas. I’m always grateful when people tell me that they are thinking or praying for India or that they’re there to listen. Recently I was uplifted by a message from a friend that simply said courage. Still it’s the ordinary events that cause me the most sadness such as a group of teenage girls walking down Wellington Avenue on a Saturday afternoon, carefree and for the most part unaware of their good fortune.

Not long ago. I was stuck in my doctor’s waiting room with a mother and her baby girl. The mother was bouncing the baby on her knee and singing. I tried to distract myself by playing with my phone but as determined as I was it didn’t help. It felt as though the mother’s singing was growing louder and louder. I willed myself not to cry. In the past, I probably would have admired the baby but all I wanted was that mother to stop singing.  Occasionally it can feel as if I’m walking about wearing my skin over my clothes.

People have been incredibly kind to me and my family. Our social worker tells me this isn’t always the case. Many of her clients feel abandoned by their friends. I don’t know how I’d survive without support. Though this hasn’t been without its challenges. I’m very independent and at first when people asked me if they could help I would politely decline their offers. I didn’t want them to feel I was a burden. I still don’t. I know that our family is not the only one suffering. In fact, I find these days I’m more aware of other’s people’s loss. This is because I know first hand what it’s like to see those you love in pain.

I worry that if my daughter dies I won’t be able to recover. I know I’m strong but I just can’t imagine a future without her. Nor do I want to. Frequently I feel guilty that it’s her that’s ill not me. I wish I could take her place. I’ve been reading a lot of blogs by parents who have lost their children. Many of them share my sentiments. One of the consistent messages seems to be is that they wish their friends would talk about their deceased children. I worry about that too. I would hate India to be forgotten.

The decision to begin the campaign for One Strong Girl for both Mark and I was difficult. For six years we did our best to handle this situation. In the end we knew we had to spread the word for India’s sake. We just couldn’t give up. I never expected such an outpouring of generosity. It doesn’t change the sadness I feel about India’s illness, but it does comfort me. I’m tremendously grateful. These days I understand there’s a strength in learning how to accept help. I don’t know how the future will unfold—currently I’m hoping for the best but preparing for the worst—but when I do envision it, the one consistent thought that sustains me is that I want to take an active role in supporting those in need. I can’t think of any better way to honour India.

Image

India today, with one of her healthcare workers

Image

A much happier day with her beloved dog, Dimitri

 

Advertisements

41 Comments Add yours

  1. Paula says:

    I know so well the feeling you are describing. For two years we knew my son would die, and for the last months of this life we lived with the knowledge that his death was ‘imminent”. I do think the heaviness and the pain crush you and break you into little pieces, but I don’t feel (I never felt) irreparably damaged. All the contrary (and I know this does not make any sense). There is a terrible beauty, and privilege, that comes with mothering your child until the very moment when they die. It is not something anyone would choose, of course, but it is a gift of sorts anyway. Nearly a year and a half after my little boy died, I am both heartbroken and grateful. I would change everything, and I wouldn’t change a thing.
    Much courage for you, your husband and love for your girl.

    1. onmefall says:

      Dear Paula, your letter helped me a lot. Thank you so very much. xox

  2. Margot says:

    Breathtaking… while I grieve the circumstances that move you to such poetry, I am in awe of your composure and grace and eloquence … as occasionally you must be. You and India and Mark are teaching all of us about love and loss and life and what matters most. A burden shared is halved. God bless India and you and the many faithful supporters. I pray for a miracle.

    1. onmefall says:

      Thank you, Margot. I hope we get that miracle.

  3. Pamela says:

    Sending prayers above and love your way
    Pamela

  4. Felicity says:

    I am so unbelievably sorry. I shall pray to the universe for a miracle for you every day, I cannot imagine the pain you are living with, in spite of your eloquent writing.
    I lost both my parents when I was 25, so I understand your descriptions of grief; the physical pain, the panic, and the crushing weight of it, however, as a Mother I know that the pain I felt would be incomparable to the pain I would feel now if one of my children were to be so ill. I cannot even write what I intended to write…
    A friend of mine lost her child, and she tells me that I am one of the few friends she has who will talk of him with her. Having lost Mumma and Dad I know how important it is to keep their memories alive. The best thing to do it to talk about lost loved ones yourself; always talk of them… open that dialogue so that others know you are comfortable with talking about it. People will keep quiet because they don’t want to ‘upset’ you. Strange, when you live ‘upset’ every day, but I do think that is what the issue is. Once they know that you want to talk, and scream, and rant, a good friend will be there.
    I am so sorry, again. Please know there are people all over the world thinking of India every day, and wishing you and your family all the best.

    1. onmefall says:

      Thank you so much for sharing with me.

  5. Aubyn Baker says:

    As a bereaved mother myself Lesley, I read this and sighed, knowing all too well some of the feelings you are experiencing first hand. Every person’s journey in life and in death is unique, individual and truly our own journey but there are many commonalities. You have described the feelings of helplessness, despair and bargaining with the utmost clarity! Other people will take their cues from you and Mark and India, we have to educate others that death is a part of life and can be approached with honesty and bravery. India will live on in the people she has touched in her lifetime and in yours. You are a light in the mist, people will follow your lead. I tell other bereaved moms we are an elite group that no one wants to be part of, no one wants to pay that high a price, but we have no choice. Know that you are not alone, continue to be honest and brave and tell people what you need from them, they will do it for you and for India. I truly wish that there was something
    I could do for you! My thoughts are with you all!

    1. onmefall says:

      Dear Aubyn, Thank you for being so open about your life with me. I found your letter very helpful. It’s good to know I won’t be alone. I hope I will be able to face the future with honesty and courage,

  6. A friend says:

    You never fail to make my heart hurt, Lesley. My prayers are with you- and I know how much of a useless statement this is- that my prayers won’t fix India and that I can’t make things right, but God knows I wish I could. My classes at school are also praying and my entire family is keeping you in our prayers. Never would I wish this on anyone- not my worst enemy- if I have any. India is an amazing girl, and you’re such a beautiful family. I am so very sad for you. It should be a law that parents can not bury their children.

    1. onmefall says:

      Thank you. It’s very nice of you to be so kind about my family. I love India a great deal so this is very hard.

  7. Marianne Burgener says:

    Hi there

    I want to say that your entry today the 18 september hit every emotion in my body that I could possibly imagine. As I read your words aloud to my 12 year old son I felt tears running down my cheeks. My son Christian did not say a word until I finished. He felt your pain and as a child understood the love of a parent to their child.

    I have met India on a few fleeting moments in my brothers home as she and Clara would be running up or down the stairs . My name is Marianne Burgener and Clara and Sophie are my nieces. Tanis is my amazing sister in law, and Robin is my sweet baby brother. I over the years have heard India stories as well . One I recall was that India is independant and used to ride the bus on her own……. I did the same when I was a young girl. Off I would go to take violin lessons in Waterloo where Robin and I grew up. It was Clara that told me the bus story.

    I just wanted to take a few moments and send you all my positive thoughts and energy and of course lots of Love to India and your entire family.

    Marianne Burgener

    1. onmefall says:

      I’m very happy that I allowed India so much independence. I would feel even worse now I think if she’d never gotten a taste of freedom. Like you she took the bus to various music class. She also played violin. Thank you so much for sharing this with me.

  8. Hera Arevian says:

    I loved every word in this…every word. I know that I would not be able to survive if I lost Olivia…it is my biggest fear. I remember losing her on a beach for 20 minutes once in Costa Rica…it was the longest time of my life…yes, i was going to fall on my knees in grief. Fortunately, nothing was wrong, we found her…yet that fear…terror in fact has never quite left me. I feel so deeply for you and Mark….and I feel also for India. Hold her tight, that is wht I would do. savour every second and love, love her forever. I hope your writing will help others in their grief. You have a gift Lesley
    Hera

    1. onmefall says:

      THe feeling you describe is how I feel every day. There is know getting used to it. My breast is constantly filled with fear. Thank you for your kind letter.

  9. Jenni Mills says:

    All I can say is that I’m sending you a little love from across the world, knowing full well that it’s pitifully not enough, but it is all I can do.

    1. onmefall says:

      Thank you. It helps. xox

    1. onmefall says:

      I will try to, but it’s tough.

  10. Janet Nield says:

    What a remarkable post. Wearing your skin over your clothes …. Falling on your knees with grief ….. Oh Lesley, let us take some of the burden of pain, if only we could.

  11. Jan Falls says:

    dear Leslie,
    I have been following your postings since being introduced by Carole Johnson and Anne Pitman. I have hesitated to comment for fear of sounding trite or pious or being unintentionally hurtful. But I am moved tonight to say to you that I am touched by your courage in speaking aloud your fears and pain and hopes. I believe that many who are experiencing their own grief in losing their child will find some solace in reading your words because they are so real and true. You and Mark and India are in my daily prayers and I hope that you each know that you are loved, even by strangers.
    blessings,
    Janice

    1. onmefall says:

      Thank you. I hope my blog helps someone to feel a little less alone. xox

  12. Deanna Young says:

    Lesley, your courage and kindness in writing this, telling us, is remarkable. I’m thinking of you and Mark and India every day.

    1. onmefall says:

      That’s good of you. Thank you.

  13. Heather Ling says:

    Beautifully written, heartbreaking and honest. Thank you for sharing this, Lesley.
    I promise you that India will never be forgotten in our home, and I will happily share my memories of her with you, every chance I get.

    1. onmefall says:

      Thank you, Heather. India loves you a lot. I will always be grateful for the kindness you showed her.

  14. Debbie Soroczan says:

    Yes, if only we could. This is beautiful Lesley. I wish you courage too, and pray daily for your beautiful India.

    1. onmefall says:

      Thank you, Debbie, I appreciate that. Please send me more photos if you find them. xox

  15. Hi Lesley,

    I haven’t seen you in years, my kids don’t do much in the homeschooling scene these days. I remember meeting you and India at drama class and thinking how much vitality and life she had. I was so shocked and saddened when Carolyn told me what was going on. I’m so sorry that your family is having to go through such a difficult time, I plan on participating in the fundraiser on Wednesday. I hope that a miracle can be found in time. I’m sorry. I know that you probably don’t even remember me, but I’d give you a hug if I could.

  16. Patti Murphy says:

    You already honour India with your courage and strength. By writing this you have already helped others. Like Janet said, I wish there was a way we could help you.

    1. onmefall says:

      Thank you, that is my deepest wish.

  17. Eedie Wallace says:

    Thank you for sharing your grief and your struggle with me, Lesley. There is not a day (or hours, in fact) that goes by that I’m not thinking about you, Mark and India. I care deeply about what you are all going through together.

    1. onmefall says:

      We appreciate your thoughts & love.

  18. Alexandra (Melissa) Hucul says:

    HI Lesley, Finally, I am writing to you-having been putting it off because ” I didn’t know WHAT to say”–THAT , wearing thin and being “unacceptable” somewhere in me, compels me to share some of my meagerness with you. I know your family through Caroline who is my vocal teacher too-I have worked at the O.C. for over 10 years, no doubt having seen you come and go and been in recitals together. The writings in your blog have been affecting me for some time now , resulting in many , many shared tears, hugs and revealing discussions and debates with my family, friends, neighbors, co-workers. While reading through, I have felt my outlook, my attitudes, my applications shifting as I related to your journey on so many levels and then stood back in awe and compassion over the sheer cliffs and bottomless pits you have been pushed over and into. I have ALLOWED the washes of grief, shame, guilt, anxiety, anger and sadness. And I have smiled and laughed and then forgiven myself for my selfishness when I felt the GREEN monster of envy come to visit me.
    The Shame I felt was because I ENVY India. I envy India for having something that I have always wanted, always searched for, and always wanted to BE. A good mother. It seems like such a simple thing , but it is not. If I had stopped reading after the poem you wrote about India-in-the-beginning I would have known all I needed to know about your mothering: enjoyment of THIS MOMENT; however messy. Appreciation of ages and stages. Accepting of challenge. I can only imagine that to be RIGHT HERE-RIGHT NOW must be a challenge today for you. Life is changing colors right now, for all of us. Thank you for sharing. Most Sincerely, melissa

    1. onmefall says:

      Thank you Melissa for your very honest letter. It made me cry. I don’t particularly consider myself a good mother. I’m not a very maternal person. But I do love my girl a great deal and would do anything for her. Today is a challenge for me. It’s hard to feel powerless. Still I won’t give up hope until I have no alternative. xox

  19. I think about you guys everyday and am in awe of your strength. I read that someone said you you that “we get the children we deserve”. You and India and Mark don’t deserve this unfair situation, but I have to say, India was so lucky to get the parents that she got. What an incredible mother you are to be carrying her thorough this. Again, I am humbled thinking that you and Mark are able to get out of bed and put one foot in front of the other. Thank you for sharing this story.

    1. onmefall says:

      Hi Allysun, I don’t think we are particularly special parents we just love our girl a hell of a lot and we just want her to be well again. but thank you for saying such lovely things and for thinking of us all. We are moved that people care for us so much.

  20. Maria says:

    My dear friend,
    You are one brave mother, woman, brave wonderful person. You have found a way to make the most fear experience in a parents life a matter for everyone to come together, your family struggle is open in teh air, and the energy that ocmes from it can only transform into something good. India is a lucky girl to have you in her life, and so do you, Life has given you thses cards and you are doing the best anyone could ever imagine doing. She has you to be there in these times, unique moment in anyones life. She knows you are there, you are all together in this, and now you have me and all the ones who want to be. This is an extraordinary experience that forever keeps changing the way to look at life, and you with your sharing and writing make it so real and so felt.
    My children talk about India, they love her and ask me for her. I tell them how sick she is and how you and Mark are so in pain. They ask about death and diying, which corresponds to their age curiosity, they apply their curiosity in this so familiar moemnt we are having you you. I tell them how enery transforms, and does not disappear, how India and you and Mark are with us even though you are so far away, but we are allways near. That is how I explain things these days.
    Talking about diying is talking about living well, talkning about death is another way to talk about life. I love you.
    Strenght to you three. and lots of brave and loving energy!

    1. onmefall says:

      Thank you Maria. What a wonderful letter. It was good of you to think of me.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s