Grieving

A Thankful Heart

This is our first Thanksgiving without Theodore. I should be cutting up turkey into small pieces and placing it on the tray of his highchair next to me. Instead, it sits empty in the corner of our kitchen. I’ve been living every day since August 4 with a tender heart and shattered soul but the holidays certainly have a way of emphasizing Theo’s absence. I previously experienced this when I celebrated my birthday last month. As I blew out my candles I had only one wish – the one wish, which I know is impossible to grant: to have my sweet boy back.

Although I celebrate it without Theo, this Thanksgiving, I realize that I have so much to be thankful for.

I am thankful for palliative pediatric physicians and nurses. I can’t imagine a more difficult job. You watch sweet, innocent children slowly fade from this world, at times suffering in such cruel, unfair ways. And, you have conversations with their exhausted, hopeful parents that should never be heard. Yet your strength does not detach you and your compassion is always apparent. To you, every little child is as special as the next and the small details never go unnoticed: which stuffed animal was his favourite, which songs seemed to relax him best, when he was cutting a new tooth, or when he received a new haircut. You did everything in your power to save him and when medical intervention failed, you did everything you could to keep him comfortable. But, the tears in your eyes when you said goodbye to him for the last time meant more to me than your medical degree every did.

I am thankful for organizations such as the Ronald McDonald House, which provided us with a room to stay so we could be as close to Theo as possible while he was in the hospital. I am also thankful for a healthcare system that allowed us to eventually leave the sterile confines of the hospital and take care of Theo in our own home. This required coordination from multiple agencies and is a luxury that parents in most other countries would only dream of. We were able to stay by our son’s side, create countless memories, and eventually provide him with a dignified peaceful passing in the comforts of our home, surrounding by family.

I am thankful for my nieces and nephews. Every single time I see you all together, I can’t help but picture your cousin running beside you. And most days, the vacancy of that empty swing next to you is almost too much to bear. But then you say the one word, which plays such beautiful music to my ears. A single word, which confirms his existence. His name. Theo. Unlike most adults who are afraid to say his name, your innocence protects you from this fear. And when you do, I have to fight back the tears and resist from wrapping you in a big hug because it absolves me from my greatest worry: that he has been forgotten.

I am thankful for my sons. One of whom I carry in my arms and one of whom I carry in my heart. I will suffer no greater loss than the loss of my child but I am thankful for the opportunity to be his mother. There are women who would trade anything in this world to hold their child in their arms and to experience the joy of motherhood. I am blessed to have experienced this first with Theo, even if it was taken from me so painfully and so soon.

I am thankful for other bereaved parents who have reached out to me since Theo’s passing although I wish our club didn’t exist. No one should experience the pain of seeing their child take their last breath, and the cruelty of picking out their tiny coffin and watching it be lowered into the ground. And, the worry that you’ll one day forget his sweet smell, the softness of his cheeks, or the way his hair tucked around his ears. You have reminded me to breathe on the days where the grief feels suffocating and that it’s ok to smile on the days when I feel him extra close to me. We are united by our angel children and are comforted by knowing that they are together, at peace, watching over us.

Lastly, I am thankful for you. Your messages, prayers, cards, phone calls, donations and comments on this blog have radiated through the darkness. You have carried me on the days when I lacked the strength to take the next step. I wish I had the opportunity to thank each and every one of you personally. This year has definitely been the hardest of my life and I have certainly struggled with its merciless events but then I remind myself of you. Your selfless compassion and genuine empathy have upheld our family and assured me that life still is beautiful, still is deserving of gratitude.

Freddy and Theo

 

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Five Years

Although we are apart, today we celebrate our five year anniversary. Five years of laughter, adventure and tears…five years of good times and bad.

Five years ago, when I held your hand and confidently repeated our marriage vows, I envisioned the many beautiful moments that would define our life together.

We would wake up beside each other each morning and fall asleep in each other’s arms at night. We would sign the offer for our first home and build our future in a community abundant in friendships and opportunities. We would hold our child in our arms for the very first time and later watch him grow and learn with pride. We would have a house resonating with the sounds of children’s laughter and footsteps.

I have to confess that although I vowed to stand by your side through the good times and the bad, I wasn’t prepared for the bad. Five years ago, when I held your hand and innocently repeated our marriage vows, I failed to envision the many difficult moments that could define our life together.

We would forego waking up beside each other so one of us could sleep by our palliative son’s bedside each night and later we would have to live apart for weeks at a time. We would have to sell our first house and leave the city we called home. We would hold our child in our arms for the very last time after watching him suffer for seven months. We would have a house resonating with our son’s cries and filled with medical equipment and nursing staff.

This last year has presented us with our biggest challenge as individuals, parents and as spouses. We have learned the depth of our commitment and what it means to really love one another. Five years ago, I had a naïve, romanticized notion of love. Today, I know that although love is celebrated during the good times, it is strengthened during the bad: during long hugs at a hospital bedside, the tight grasp of a hand while listening to devastating test results, and the shared tears at a burial site.

The love that we share is far from perfect but it is real and unyielding.

We have had no choice but to evolve as a couple, our original innocence matured by our shared experience. Today, when I look into your eyes, I see our two sons: the pain of our past and the hope of our future. This will not be an easy journey, but nothing worthwhile in life comes easy. As we grieve independently and grow as a couple, there will be as many tough days ahead, as there are behind. My only vow to you is to continue walking beside you every step of the way. Until my last breath.

I wasn’t prepared for the bad but I’m not convinced anyone is. I do know that there is no one else I’d rather have by my side. Together, we will continue to find joy in life’s beauty and face its inescapable sorrow. And our love will always be enough.

To life and love. Happy Anniversary.

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Big Brother

A few days after we returned home from Theo’s funeral, one of his nurses came by for a visit. We sat in our family room, the room that was previously home to Theo’s crib, equipment, medication and dressing supplies. The same room where we had held our beautiful boy for the last time, just one week before.

I feel lost, I remember telling her. For the last 7 months, Theo had been the sole focus of our family. Every ounce of our energy and time was devoted to his care. Now he’s gone, and we are two parents without a purpose and without a child.

She reminded us that for the last 7 months, we had been living a life inconceivable to most. Mark and I had normalized it because we had no other choice. And though we would still trade every ounce of normalcy to have him back, Theo’s illness consumed every aspect of our lives which revolved around nursing shifts, around the clock medication, daily dressing changes, social isolation, and the intense anxiety of knowing that at any point, we would have to say goodbye to our little boy.

Her advice to us was this: rest. Take this time to rest physically and emotionally.

I realized that, as the shock of Theo’s passing was starting to wear, I needed time to be quiet and still. And I did just that. I detached myself from most of the world so I could quietly grieve my son and rest my heart. When I use the word rest, I’m not referring to a repose from mourning, quite the opposite actually, a time to just be. A time to let the stillness of grief replace the former restlessness that defined our lives.

But now I’ve found myself being drawn back to my writing as I navigate this complex grieving process, and I wanted to start with an announcement.

Our sweet Theo is a big brother. A week and a half after we laid our first son to rest, we welcomed our second.

Babies born after child loss are often referred to as Rainbow Babies. This is quite befitting as the beauty of a rainbow does not negate the ravages of the storm yet in the midst of the darkness and clouds, it provides light and hope. Joy and sorrow dance daily as we grieve Theo’s loss and find happiness in our son, Frederick.

There are now two things that I always wear close to my heart. The first is Frederick, whom, as you can imagine, rarely leaves my arms. The second is an angel wing that I wear around my neck, of which Mark has an identical one. The pair made by the two was attached to the pocket of Theo’s jacket when we buried him.

“Oh my love will fly to you each night on angel’s wings…”

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Empty Arms and the Sound of Silence

It’s been one week since our dear Theodore became one of Heaven’s most beautiful angels. One week since I’ve held my sweet little boy in my arms.

I knew this day was coming but no amount of foresight could have prepared me for the all-encompassing ache that has enveloped every layer of my life this last week. The physical effects of grief have left me feeling empty and yet simultaneously heavy and listless. As much as I try to remind myself that my sweet Theo is in a better place, with every breath I take, I yearn for my son. I yearn to hold him in my arms again.

Our house is silent and I ache for the many sounds of Theodore, even if they were atypical. The gentle hum of the oxygen concentrator, the irregular beeping of the oximeter (measuring Theo’s changing pulse and oxygen saturations), the priming of his feeding pump, his stridor breathing, the revolving door of visiting nurses, doctors and CCAC staff members, the many calls from the pharmacy and supply companies. The silence is a resounding, painful reminder of his absence.

We have gone from a family of three, parents of a toddler, to just the two of us. And it feels like we’re starting over. I recognize how blessed we are that Theo’s little brother or sister is on the way (and we of course look forward to their arrival) but this does not in any way ease our grief. We were also desperately hoping that Theo would have had the chance to meet them.

I have been told by parents who have lost children that the grieving will never end but it will soften and one day it will not be all consuming. I have also been told, and seen, that happiness is possible again. My faith in this assurance has provided me with the courage to face each new day.

I’ve decided to keep writing for two reasons: first, I believe that writing will assist me in my grieving process and just as I had hoped that my blog might have provided comfort and inspiration to parents faced with the difficult journey of raising a palliative child, I hope that my writing may now be helpful to parents who have suffered from child loss (though I wish with all my heart that these types of parents didn’t exist).

And second, because I believe that Theodore’s story doesn’t end. It lives on not only for our family but for all those who were impacted and inspired by my little warrior.

Heaven’s Angel

Heaven has gained the most beautiful angel.

Theo’s health had been declining over the last week. We were increasing his oxygen intake daily as he was showing signs of respiratory failure. Overnight on Sunday, he took a turn for the worst and we made the decision to fly Mark home yesterday morning.

Last night, Mark and I were able to spend a few beautiful hours cuddled up with Theo until he passed peacefully from my arms and into his Grandpa’s.

It is no coincidence that Theo chose Monday to part from this world. My courageous little boy is now free from pain and suffering and I couldn’t imagine a greater miracle.

Anticipatory Grieving

During our last counseling session, this was the phrase that was used to describe our current state of grieving. Anticipatory grieving refers to the grief process that a person undergoes before the loss actually occurs. Terminally ill individuals and their loved ones will experience this form of grieving, whether they are conscious of it or not, from the very moment they learn of their life-threatening illness. Some studies have shown that anticipatory grief impacts post-death bereavement, easing the intensity of the grieving process after loss (compared to unexpected or sudden losses, which lead to more severe bereavement reactions) but other studies have shown that anticipatory grieving may just extend the mourning process and lead to feelings of isolation.

We all experience some form of anticipatory grief, as soon as we become aware of the inevitability of our own death and the death of our loved ones. We are not invincible, and regardless of factors beyond our control (i.e. genetics) and within (i.e. diet and exercise) not one of us is guaranteed a long life, a healthy life or an easy life. Perhaps Mark and I are fortunate because we now better understand the limitations of life and the reality of death.

Having experienced an unexpected loss with the sudden death of my father as a child, I’m not convinced that one form of grief is preferred over another. I only know with certainty that love and grief are intertwined in life and the stronger your love for someone the more powerful your grief for them. The shock of coming home from school one day and realizing that my father’s chair would forever sit empty was not easily overcome. It didn’t feel real; for weeks following his death I waited for him to walk in the door smiling after a long day of work. I’m still constantly grieving his absence; some days are just tougher than others.

We will have to say goodbye to our sweet boy long before we should. I have grieved for Theodore, our healthy son, for five months now and I will continue to grieve for him until I breathe my last breath. Grieving processes are personal and I know that although Mark and I have faced every step of this journey together, we grieve differently and will continue to process our loss individually. I also can’t anticipate how I’ll actually respond to losing Theo when that day comes. What will I do when I look into your empty crib? How will I answer the unavoidable question: how many children do you have? Will the quietness and emptiness following your absence ever dissipate? Will my arms always feel empty? Will people remember you for your strength and spirit and not as my dying baby?

At times, these haunting questions, the exhaustion of being a caregiver, the fear of the inevitable and the anxiety and sadness of watching Theo suffer overwhelm me. Elisabeth Kubler-Ross in ‘On Death and Dying’ describes the five (non consecutive) stages of grief as: denial and isolation, anger, bargaining, depression, and acceptance. Perhaps knowing that Theo’s life is shortened has allowed Mark and I to navigate easier through the denial and bargaining stages but I often wonder if anticipatory grief, although productive from a psychological sense, is simply a prolonged and more painful grieving process.

Grief can wash over you at predictable times (like during father daughter dances at weddings) and unpredictable and unwelcome times too. The triggers are also unique. The sight of thick wool socks remind me of my dad in the winter and I have an aversion to the fragrant aroma of the Stargazer lily – when I smell them, I am nine years old again, surrounded by flower arrangements, staring at my father’s coffin. The triggers for Theo are already present and abundant: we’ve tucked away all of his toys, his favourite sippy cup, little running shoes and all of his pants (he can no longer wear these due to his progressive wounds) because these items are painful reminders of when he was healthy. And, whenever I see pictures or videos of smiling, active toddlers Theo’s age, our loss always feels emphasized.

Grief is a complex, powerful emotion and I have no choice but to face it (now and for the rest of my life) but I grieve because I love powerfully and passionately and I wouldn’t live my life any other way.