Month: May 2014

Miracle Mondays – Lions and Tigers, and Bears!

This weekend, we enjoyed a beautiful sunny day and the many wonders of the Toronto Zoo. This was Theo’s first time visiting and we’ve been hoping we’d get the chance to experience the zoo with him since he was last hospitalized.

I recognize that this is an anthropocentric view but zoos provide a chance for us to step away from our everyday lives and visit places we have never been and may never visit in our lifetime. As you walk past the Masai giraffe basking in the sun, the poison dart frog conspicuous amongst the rocks, or the snowy owl perched on a branch, you are instantly transported away from home and across the globe to the wild wilderness of the African savannah, Central American rainforest or arctic tundra. Zoos, although highly debated have their benefit (both educational and conservational) and it’s impossible to visit and not be reminded that we humans are simply one more co-existing species, sustained by the bountiful and diverse benefits of nature.

Mark and I both have a deep appreciation for biodiversity, which is why, when choosing a destination for our honeymoon, we decided unequivocally on Costa Rica. We stayed at an eco lodge in the middle of the rainforest where the scarlet macaws are ubiquitous overhead, the insects are breathtaking, and you’re awoken to the sound of howler monkeys each morning. Although our plan is for Theo to experience as much as possible during his shortened life span, I often get disheartened when I realize that he won’t get the opportunity to appreciate the beauty of Costa Rica (or any other country for that matter). For this reason, our trip to the zoo was so much more than just a walk past the many exhibits, it was a chance for Mark and I to travel with Theo across the globe and experience and embrace the wonder of nature together.

Today’s miracle was a much-anticipated trip with our son to the local zoo…and around the globe.

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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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Thank you, Nurses!

This week is National Nurses Appreciation Week. The following is my tribute to nurses or what I like to refer to them as: angels on earth.

Nursing is not an unfamiliar profession to me – my Aunt, sister and best friend are all nurses. I can recall their stories of the struggles of their profession: running from one patient to the next, holding their bladders and going without lunch, communicating with insolent doctors and frustrated families, and the many physically demanding days of non-stop lifting, wiping, feeding, administering and suctioning.

They are humbly reticent, however, about the emotional impact they make on patients and their families. And, because of this, I’ve never fully realized or appreciated the extent to which nurses enhance the quality of our lives during the most difficult times. Nurses are the gentle, unimposing, and far too often unrecognized, superheroes of the medical profession.

So, to the many nurses we’ve met along our journey: Thank you.

Thank you to the nurse who suggested that we move Theo from a crib to a regular hospital bed so that we could lie next to him after spending seven long days at his bedside in PICU. And thank you to the nurse who repositioned the many lines and wires attached to my precious boy’s body so I could finally wrap my arms around him.

Thank you to the nurse who first saw my son’s bloated, bruised body and told me that he was the most adorable little boy you’ve ever seen. And thank you for always talking to him and encouraging me to do the same even though I wasn’t sure he could hear me.

Thank you to the nurse who later rocked and cuddled my son when I was out of the room. Knowing that he was still comforted by a warm, loving embrace when I wasn’t there to provide it, allowed me to slip out for that much needed coffee or washroom break. Thank you also for singing and sweetly whispering to him like he was your own.

Thank you to the nurse who encouraged us to go back to the Ronald McDonald House to shower or take a nap when we were hesitant to leave our son’s side. We could finally do so because we trusted you and knew that you cared for our son just as much as we did.

Thank you to the nurse who would cover me with warm sheets as I slept on the hospital cot next to his bed. Thank you also for making sure I was eating enough during those early days of my pregnancy even though it was often the last thing on my mind. You gently reminded me of the child I was carrying and allowed my broken heart to find some hope and peace.

Thank you to the nurse who sat with us following difficult conversations with many of our son’s pediatricians and specialists. You softened their callous prognoses and provided hope when it seemed like none existed. Your moistened eyes always spoke of your selfless empathy.

Thank you to the nurse who stayed with us for hours when our son was first extubated. We were scared to be alone and even more scared to say goodbye. You stayed late that shift, and when you left, enveloped us in hugs that spoke louder than words.

Thank you to the nurse who later taught us how to change our son’s wound dressings, prime his feeding pump, administer medication and check the placement of his nasogastric tube. We were nervous about our new roles as caregivers and you gave us the confidence we needed to face this challenge.

Thank you to the nurse who encouraged us to be advocates for our son’s care when we left the hospital and struggled with the bureaucracy of home health care. Thank you for always helping us fight to ensure he receives the best care possible.

To all the nurses we have encountered along the way: thank for looking beyond the wounds and MRI results and seeing our beautiful son for the precious little boy he is. And, thank you for going above and beyond your job requirements every single day especially when it goes unrecognized.

Donning scrubs instead of capes, you truly are superheroes.

Miracle Mondays – Belated First Birthday

On Wednesday we finally celebrated Theodore’s first birthday. When planning his party, we thought what better day to celebrate than McHappy Day? On this day, proceeds support the Ronald McDonald House, a charity that has been invaluable in our family’s life during both Theo’s hospital stay these last few months and my nephew Luke’s hospital stay a few years ago. This way, we could spend the day with the many people who love Theo while giving back to a great cause.

Surrounded by family and friends at a nearby McDonalds, we feasted on burgers (a Big Mac challenge may have occurred), enjoyed face paintings and celebrated our little man’s belated first birthday. An incredible superman birthday cake was also provided by Icing Smiles Canada, a nonprofit organization that provides custom cakes to families whose child is impacted by a critical illness. Friends and family members, who weren’t able to make the drive up, also celebrated with us back at home.

The pictures are a testament to how special the day was but I will say that when it came time to sing Happy Birthday, I looked up and saw the many loving faces who have been with us through this difficult journey every step of the way. Celebrating this milestone for Theo meant as much to us as it did to all of them and we wouldn’t have the strength to face each day without their support.

Happy Birthday Dear Theodore. As we sang these words, I couldn’t fight back the tears of pure happiness: I never thought this day would come and now I will forever hold it in my heart.

Today’s miracle is the perfect celebration of our sweet Theo’s first birthday and the wishing of many more to come.

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Mother’s Day

I have to admit that this is a bittersweet day for me. Tomorrow, we celebrate mothers. We recognize the love a mother has for her child and the love a child has for their mother.

A mother’s selfless love is incomparable to any other. It is raw, vulnerable, and unfaltering. It begins the moment you open up your heart to your child and is carried with you until the day you die. Unlike any other relationship in life, regardless of the circumstances, it cannot be compromised.

This day, I am reminded of the endless love I hold for Theodore and my unborn child. Their breath is my breath; they both hold my heart in their precious hands and for them, my pride overflows.

Sometimes when Theo is having a bad day, I wonder if I could go back to the days before I was a mother: before I experienced the unparalleled ache of daily watching my child struggle to survive…labouring with every breath, vomiting consistently, crying out in pain as his hands and feet decompose. If I could go back to those seemingly easy, carefree days, would I?

I know that even if I could, I wouldn’t. The greatest moment of my life was the day Theo was born and I wouldn’t trade watching him grow and learn that first year for anything in this world. Since his illness, I’ve also learned that my love for him knows no bounds. Even though I’ll likely be burying my son rather than him burying me, I wouldn’t change it. I wouldn’t change the incomparable joy of being a mother. To have never experienced this joy is a much worse outcome.

This is a difficult day for me, however, and I’ll admit that I’ll be fighting back feelings of jealousy and loneliness tomorrow. My son won’t be running to me tomorrow morning with a hand drawn card and sloppy kisses. He won’t be able to say Mama, give me a hug or even smile when he sees my face. We won’t be dressing him in a cute outfit and heading out to brunch. Instead our day will be the same as every other – administering pain meds, suctioning and providing oxygen, and changing his dressings.

Tomorrow, I won’t be celebrating Mother’s Day like most moms, and neither will the mother who’s experienced infertility, miscarriage, adoption struggles, stillborn or child loss. For these women on Mother’s Day (and every other day), their gentle, maternal hearts should be appreciated, their loss and grief recognized, and the difficulty that this day may pose acknowledged.

Theo can’t express his love for me but I remind myself that it’s there. I know how much he loves me and he knows the boundless love I have for him. This Mother’s Day will be mixed with pain and joy but we’ll be spending the day celebrating our unconditional love, a love I would never change.

Miracle Mondays – First Haircut

When you realize that contrary to the life you’ve envisioned for them, you will in fact not see your child grow up, a long list of missed moments floods your conscience. One of these, for me, was Theo’s first haircut – a simple but meaningful childhood ritual marking his transition from baby to boy. I pictured Mark and I helping him climb up into the barber chair and wrapping the cape around him, Theo grinning as his baby locks fell to the floor.

Instead, Theo’s first haircut occurred in the PICU when the sides of his head were shaved so that an intravenous line could be inserted into his scalp because a suitable site couldn’t be accessed elsewhere on his body. His second haircut occurred two weeks later when his doctors told us he would succumb to renal failure and encouraged us to take hand molds and have a lock of his hair removed.

This weekend, Theo experienced his third haircut and it was even more special than I envisioned his first would ever be. Seated in his father’s lap, he shed his baby locks and welcomed a handsome new look.

I don’t know if it’s typical for parents to cry as much as we did when watching their child’s first haircut but when you feel like you’ve been deprived of so much, sometimes the simple moments really do matter most.

Today’s miracle is the shedding of locks and the gathering of missed moments.

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