Palliative Child

Miracle Mondays – Theo’s Benefit

Saturday night, in my hometown, a benefit dinner was held in Theo’s honour. It was a four and a half hour drive for us Saturday morning with a return trip on Sunday. We were certainly nervous about the trip and it required a car full of supplies and equipment as well as the coordination of scheduled dressing changes and oxygen delivery but Theo did wonderful! He travelled really well and was quite comfortable during the event.

As Mark and I stood in front of the approximately 250 people who joined us in celebrating Theo and his courageous journey, I was reminded of two things: first, we are not (and never will be) facing this difficult journey alone and secondly, our community is comprised of amazingly selfless, and incredibly generous individuals.

The hall was filled to capacity with friends and family (some of whom had driven hours and flown across the country to be with us) my hometown church members, figure skating and high school friends, elementary school teachers, farming friends of my father’s, community members, and some individuals whom I met for the first time that evening but have been following Theo’s journey.

The time and effort that went into planning Theo’s benefit and the abundance of donated prizes from local businesses and individuals still leaves me speechless. I wish there was a way to adequately thank each and every person who helped organize the event and those who attended but I hope they know that we will be forever grateful for the love that was shown to Theo and our family that evening.

And, thank you to each individual who came over to meet our precious son. When you saw him for the first time, you saw a strong little warrior who has inspired our lives (and the lives of many others) and not just his terminal diagnosis.

On Saturday, I was wrapped in love in a way that a good hug lasts long after the individual has let go. I’m still feeling the supportive embrace; an embrace that will carry us through until the last day we share with Theo.

Today’s miracle was a wonderful night celebrating our courageous little boy and a community’s supportive embrace that will never fade.

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Miracle Mondays – My Sister

I know I missed last week and I’m sorry for any worry I may have caused, we’ve just been busy with our move and picking out paint colours for Theo’s new bedroom. I’ll fill in the details of our transition later.

Theo has been having a decent week. He is still seizing but his seizures seem to be more adequately controlled by the new medication and his vomiting episodes have decreased slightly now that he’s receiving his pain medications subcutaneously rather than through his nasogastric tube. Unfortunately, we’ve had to increase his pain medication as his legs are starting to cause him increasing amounts of pain, particularly during dressing changes. We are still seeing low-grade fevers most days, which his doctor believes could be a sign of microaspiration.

In the beginning, I often found myself asking: why Theo? Why our family? I’ve since stopped asking myself questions without answers but have arrived at the following affirmations, making the previous questions irrelevant.

Theo is loved. We are strong and supported.

Unquestionably, our biggest source of support comes from someone who has humbly walked every step of this journey with us.

She was the first face I saw when we landed at McMaster after being air lifted from Timmins. She held me and prayed as we watched a team of doctors perform CPR on Theo that same night. At eight months pregnant, she drove an hour each way to visit Theo while he was at the hospital every day, bringing us food and comfort. When Theo stopped breathing back in April, she left work immediately and drove us to the hospital, staying by our sides well into the night. With an infant and a toddler, and running on little sleep, she comes over every day when we are without nursing coverage (and when Mark is away) to assist with dressing changes, help prepare Theo’s meds and allow me the opportunity to nap or leave the house for errands. I can do so because she knows every aspect of Theo’s illness including: medication times and dosages, seizure and fever frequency, when his coughing will be followed by vomiting and when he’s crying out because his stomach is bothering him from the constipating side effects of his medication.

She knows what to do on the days when I feel like my world is collapsing and just what to say when my words fail me. She messages me every single morning, without fail, asking how Theo’s night was and when she isn’t here helping, she finds the time to organize a fundraiser on Theo’s behalf. She is the epitome of compassion and selflessness.

Her profession as a nurse has been an invaluable asset to us but I know it can’t be easy for her to see her nephew suffer the way he does. To hold his leg during dressing changes as he screams in pain and she wipes the sweat from his tiny forehead. To watch his seizures increase in intensity and feel helpless against their powerful hold.

I have considered her a blessing in my life, long before Theo became ill. In fact, I’m not sure how I existed in this world before she came along. We are constantly mistaken as twins and we might as well have been because not only do we share the same thoughts but I’m convinced our hearts share the same beat. Which is why, although I struggle with a way to express how lost I’d be without her, and how blessed Theo is to have an Aunt like her, I know that she knows.

Today’s miracle is my sister who is dedicated to caring for others and whose compassionate heart beats stronger than anyone else I know.

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Miracle Mondays – Finding Strength

If, last year, I would have been presented with the scenario of my life right now: watching my sweet son weaken and struggle to survive. Sitting by his crib, rubbing his head, and cleaning up his vomit. Watching his eyes roll backwards, seizing to the point that he starts to bite his tongue and lip. Picking him up and holding him in my arms, with four different lines and tubes connected to his little body. All while eight and a half months pregnant, with my husband away at work.

My response would have been: I wouldn’t have the strength.

Yet, I have learned over these last six months just how strong I am. Strength is acquired, not inherent; it is revealed in the twilight of the stormy days, not the sunny ones. And realizing and admitting one’s weakness is not contrary to finding strength. In fact, doing so is the only way of achieving it. I am strong but no woman is an island. My weakness is my isolation (emotional and situational) and my strength is derived from the endless support I have from community, friends, family and Theo’s care team.

Each one of us will fight a unique battle at different points in our lives (whether it be with illness, relationships, careers, money, stress…), the key is using these battles to find our strength and refocus on what matters. And, we all have the strength necessary regardless of our struggle because when the time comes being strong will be the only option available.

Theo’s seizures have increased in intensity and frequency over the last few weeks. A few days ago, we started him on a new medication (administered continuously via a subcutaneous line in his arm) to help control their devastating effects. Today, Theo’s doctor came by for a visit and told me that the seizures will only get stronger and more frequent until eventually he can’t recover from one of them. Stay strong, he told me as he was leaving. When the time comes, stay strong. It’s the only option I have, I responded.

Today’s miracle is finding strength in the storm and all those who help light the way.

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 – 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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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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Theo’s Update

Yesterday, we returned to McMaster Children’s Hospital for a follow-up appointment with Theo’s pediatrician and plastic surgeon. Theo’s wounds are healing well but his digits are starting to auto-amputate and he required an assessment for amputation of his legs. His plastic surgeon is pleased with the regeneration of healthy tissue but believes that Theo is not strong enough to undergo the sedation required for surgery. Theo’s pediatrician also confirmed that Theo’s health has declined since his last visit – his breathing has become progressively more struggled, he is vomiting consistently, and he is now constantly dependent on oxygen. We have seen signs over the last few weeks, which we suspected would indicate that Theo hasn’t improved, but hearing our fears reaffirmed was devastating.

We’ve had several end of life discussions with Theo’s doctor now and I respect and appreciate his honest and straightforward approach. He has endeavored to ensure that we are prepared for the inevitable whenever that time comes. But how can you ever prepare yourself to say goodbye to your child? I once read that having a child is like having your heart walk outside your body. One day soon, I won’t just be burying my son, I’ll be burying my heart too.

I now know that Theo isn’t destined for life on this earth. His constant suffering reminds me of that daily but truthfully, I’m afraid. I’m afraid to say goodbye and I’m afraid to live without him. And I’m afraid of not knowing if I’ll still be able to hold him tomorrow…or the next day.

Life doesn’t change for us. We continue to take it one hour at a time and count our blessings for each additional day we get to spend with Theo. Theodore’s life is not about the happy ending, it’s about the story. The story of a beautiful, inspiring, little boy that has shown more strength and spirit than anyone else I know. And, I’m so proud to call this little boy my son.

Miracle Mondays – Sparklers and Magic

Today, in celebration of Victoria Day and Theo’s 16 month birthday, we lit the sky with fireworks and reveled in the mesmerizing glow of sparklers!

There’s something undeniably nostalgic about fireworks. Seeing the night sky filled with a breathtaking display of light and colour evokes memories of childhood when summer days were filled with magic and imagination. Even now, I see these vivid sensory displays for their perfect mix of art and chemistry, and marvel at their ability to illuminate and transform the darkness. They add an enchanting dimension to celebratory occasions and their grandeur often leaves us speechless, forcing us to take a minute to appreciate the magic of the moment.

Today’s miracle is appreciating the magic in my life and for the first time, watching fireworks electrify the night sky with my precious boy in my lap.

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Listen to the Mustn’ts

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Every night after his bath, we would read Theo a story before bed. My favourite books include the collection of poems by Shel Silverstein. Today, this poem seems especially fitting for our little warrior.

Listen to the MUSTN’TS, child,

Listen to the DON’TS

Listen to the SHOULDN’TS

The IMPOSSIBLES, the WON’TS

Listen to the NEVER HAVES

Then listen close to me—

Anything can happen, child,

ANYTHING can be.

–       Shel Silverstein

Theodore’s Story – Part 1

In retelling this part of Theodore’s story, I must warn that it may be difficult to read.

About 6 hours after arriving at the ER in Timmins, we were air lifted to McMaster Children’s Hospital. Theodore and I flew down together and Mark was lucky enough to catch a commercial flight that would land him in Hamilton only a few hours after our arrival.

My sister and her husband met us there and our parents and siblings arrived within the next few hours. I was asked to wait in the family waiting room until the team at Mac had Theo transferred and stabilized. An hour after we arrived, one of the nurses, with a sense of panic, rushed to get me.

She guided me to Theo’s room and I pray that what happened next would one day fade from my memory.

My view of Theo was obstructed by a group of doctors and nurses surrounding his bed. At the foot of his bed stood the pediatrician directing orders to his team like a captain instructing his officers. From the bed came the counting of chest compressions. Pulse check, demanded the pediatrician. Time, demanded the pediatrician. Epinephrine, demanded the pediatrician. And, repeat.

I collapsed in the doorway and couldn’t will myself to move. My sister, I screamed. Get my sister. The next thing I knew, she was by my side and a nurse was guiding us to a couch at the back of the room. I stared in shock while she held me tight, shaking and praying, Lord keep Theo alive. Time stopped.

We’ve got a pulse, said a voice from the crowd. I finally took a breath.

My son had just survived two cardiac arrests in one day. He had defied death again and with our little warrior’s unfathomable strength and will, it wouldn’t be the last time.