Month: June 2014

Miracle Mondays – Moving Forward

This week, we will make the transition from administering Theo’s pain medication via his nasogastric tube to subcutaneously by means of a pump. This will be the easiest, safest and most reliable way to control his pain and other symptoms, however it means that in addition to his feeding pump and oxygen, he’ll now have another line attached to either his arm or leg for the continuous administration of medication.

This will make travelling with Theo and repositioning him even more challenging and we are taking these changes in stride. This new pump is likely permanent but we know that it will keep Theo more comfortable, so like every step along this journey, we will learn to adjust and move forward. I know what this change means for Theo and for our family but our priority remains unaffected: to live life. I refuse to let my son spend what little time he has left lying in his crib.

Our lives are remarkably different from that of our friends and families – whenever we leave the house (even if just for a few hours) our car is packed with oxygen tanks, a feeding pump, suctioning machine, medications, extra ng tubes and dressing supplies. Trips also have to be planned well in advance to coordinate with oxygen delivery and nursing visits. Our lives now lack their former simplicity and security but I assure you that there are still just as many moments of happiness. After all, happiness is not a product of our circumstances; it is an interpretation of them.

Mark has returned for the week and we enjoyed a fun weekend before we adjust to the additional restrictions of the new pump. On Saturday, Theo spent some time in the pool for the first time this summer (lounging like a king!) and on Sunday, he celebrated with family at his cousin’s cowboy themed first birthday party. We were blissfully happy to spend these moments in the sun with our son.

Today’s miracle is fun in the sun and moving forward in the face of impeding changes.

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Miracle Mondays – Fitting the Mould

 

Theo’s nasogastric tube and oxygen line are conspicuous. He has stridor breathing – every time he takes a breath, he emits a loud high-pitched sound, which is believed to be a result of scar tissue in his larynx caused by his prolonged intubation while he was in PICU. He randomly cries out (either caused by the pain in his limbs or his underlying neurological condition) and can be difficult to console; he vomits frequently.

We used to be nervous the first few times we took Theo out of the house. What if he cries? What if he vomits? What if people notice that our son is very sick? My anxiety is not because I am in any way embarrassed of Theodore but as a highly introverted individual, the idea of drawing attention to myself or to my family made me slightly apprehensive.

When we are in crowded places, adults usually glance down at Theo then quickly redirect their gaze, sometimes smiling uncomfortably. Children, curious by nature, always notice that Theo is different from them and will stop what they’re doing to stare at him until their parents notice and swiftly whisk them away. In the beginning, the reactions of others used to unsettle me. Their reactions used to emphasize to me what I already knew: that our family no longer fits the mould, the false illusion of what’s ordinary.

Last weekend, before Mark departed for work, we decided to take Theo to Niagara Falls; he had never been before. With his cousins by his side, Theo felt the mist of the falls for the first time on his cheeks. And, later he got the opportunity to soar 175 ft above Niagara Falls on the SkyWheel with his mom and dad.

As a popular tourist destination, on a beautiful summer day, it was swamped with people. And yet, that day, I didn’t notice a single one. All I could see was my family, my beautiful family. We are not an ordinary family and although I’m learning to adjust to the extroversion associated with it, I’m assertively proud.

Today’s miracle is my family who fits my mould proudly and perfectly.

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Miracle Mondays – Father Son Time

When I asked Mark how he wanted to spend his Father’s Day, his response was exactly as I predicted: to spend it with my son. And so, the two of them spent most of the day relaxed on the couch watching World Cup soccer together.

“It’s his first jersey!” Mark told me, grinning proudly as he gently placed it over Theo’s head. He will never get the chance to cheer Theo on from the sidelines as he plays his first soccer match but yesterday, that hardly mattered. With Theo in his arms, and World Cup fever in the air, daddy and son cheered on. Nothing brings me more joy than catching those special moments between the two men I love most in life.

Today’s miracle is quality time with father and son for there is no time better spent.

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Father’s Day

To my husband and the father of my son, this Father’s Day:

These last five months of parenting have not been easy; they have unintentionally tested your strength, patience and love. Four and a half years ago, we publically avowed before friends and family to love each other through sickness and in health until death do us part. And, when we decided to start a family, a few years later, we silently pledged to love our children unconditionally and be the best parents we could, regardless of the circumstances.

You’ve embraced your evolving role as a father and the new responsibilities associated with caring for our palliative son. Fatherhood has tested you early my dear husband and you have surpassed all expectations. Sure, you have moments (although rare) where you lose your patience, struggle with jealousy and succumb to the mental and physical exhaustion related with caring for a sick child but no parent is perfect. You however are the perfect father for our son.

When you look at our son, you look past his disabilities and still see the same boy who used to run to you smiling, babbling ‘Dada’ when you returned from work. You’ve retained your enthusiasm, constantly encouraging me to look beyond the lost opportunities and to continue building new memories. You haven’t received a full night’s sleep in months and have become more experienced than most nurses at advanced wound care, inserting nasogastric tubes and administering medicine subcutaneously. Your job as a father is thankless and made even more difficult because your hard work is not reciprocated through smiles and hugs like other dads but this has not defeated you.

I know it weighs on you but you couldn’t protect Theo from becoming sick and unfortunately you can’t prevent his pain but you have ensured that he is loved every minute of every day. You are and will always be his superhero.

You have been Theo’s caregiver alongside me for five months but next week you’ll be exchanging your stethoscope for your hardhat when you return to work for weeks at a time. As the pillar of this family, I know it will be not easy for you to leave us. No father should have to leave his child (albeit a palliative one) for any extended period. The sacrifice you are making for the security of our family is a testament to your love and loyalty.

Becoming parents has changed our relationship but in the last few months our bond has strengthened and our love deepened beyond what I thought imaginable for a couple our age. I never really knew how much I loved you until I saw how much you loved our son. It is those moments when I catch you sitting next to his crib reading to him at night, or gathering him into your arms after painful dressing changes, or dropping everything and rushing to his side every time he coughs, that I am reminded of the strength of your love. I am only the mother I am because you are the father you are.

Being a father to our children will be the most important thing you will do in life. And, I wish I could assure you that it will get easier but I can’t. I can only thank you for loving our son unconditionally and having you by my side as we continue to face the challenging and rewarding journey of parenthood together.

Happy Father’s Day, my love.

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Miracle Mondays – Fly a Little Higher

And we’ll go up, up, up

But I’ll fly a little higher

We’ll go up in the clouds because the view is a little nicer

Up here my dear

It won’t be long now, it won’t be long now

If only I had a little bit more time

If only I had a little bit more time with you

The above lyrics are from a song titled ‘Clouds’ written by Zach Sobiech when he was seventeen years old. Zach, a teenager from the US, passed away last year, at the age of eighteen, from a rare form of cancer called osteosarcoma. With months left to live, Zach wrote the lyrics to this song and proceeds are now being used to support research for his rare disease. If you have a few minutes, please check out his inspiring story: http://www.youtube.com/watch?v=9NjKgV65fpo. I’ve never met Zach but after learning of his story last year, I think of him often. His bravery, compassion and strength have served as an inspiration for my life, as it has for millions around the world. Zach knew his own death was imminent and yet lived every day of his life with an enviable peace. In Zach’s words, “You don’t have to find out you’re dying to start living.”

We had a wonderful weekend; Theodore experienced his first trip to the top of the CN Tower on Saturday and was awake and comfortable the entire time! As Mark held him in his arms and we looked out of the observation deck at the clouds above us and the ground below us, these lyrics played softly in my head.

And we’ll go up, up, up but you’ll fly a little higher. If only we had a little bit more time with you, my love.

Today’s miracle was a memorable trip to the clouds where the view is a little nicer.

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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.

Miracle Mondays – Recognizing Beauty

Lately Theo has been experiencing more discomfort at night which means one of us (Mark usually manages the night shift) is up almost every hour suctioning, repositioning and administering medication. Fortunately, we have nursing help during the weekdays but we are without assistance during the evenings and weekends. When we have a nurse available during the week, we take that time to catch up on a few hours sleep.

Previous to Theo’s illness, after a sleepless night of teething or sleep regression, we likely would have spent our Saturday morning as a family curled up in bed together. We are now faced with new levels of emotional and physical exhaustion as Theo’s needs have increased, and although our favourite activity will always be cuddling with him in our arms, we recognize that life is to be lived. This Saturday morning, we packed some snacks, our stroller, the oxygen tanks and feeding pump and drove across the city to High Park. High Park is a 399 acre park in the middle of Toronto filled with hiking and waterfront trails, green spaces, a petting zoo and children’s facilities. It was Theo’s first time at the park.

Mark and I currently live in a world where sorrow and beauty coincide daily. We are coping with our grief but if there is a gift in knowing that we don’t have much time left with Theo, it is our increased awareness and appreciation of the vast and abundant beauty present in this world. Theo’s illness has also provided us with the insight to truly savour the moments of beauty we are fortunate to share with him.

The three of us walked for hours along the trails, taking in the fresh morning air and beauty of the park, stopping to gaze at the swans skipping across the water and the wildflowers searching out the sun’s rays in the canopy overhead. We left the park feeling refreshed and appreciative.

Today’s miracle is recognizing and prioritizing beauty over sorrow.

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