Month: March 2014

Miracle Mondays – Birthday Celebrations

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Today was Mark’s birthday. This is not where I thought I’d be at 32, Mark told me. Last year, he declared that he had everything he had ever wanted in life: a son, a wife, a house and a career he always dreamed of. Life felt complete and yet one year later, only remnants of our previous life exist. You will experience that happiness again, I assured him. I have to believe that the best has yet to be.

As Mark held Theo in his arms and blew out his birthday candles, I knew what he was wishing for – it’s the same wish I pray for each night. I also wished that my strong and loving husband celebrates his 33rd birthday feeling the happiness he deserves.

When we were discharged from the hospital two weeks ago, we sat down with Theo’s palliative team and discussed what life would be like for our chronically ill son. The predicable scenarios, which would result in us having to say goodbye to our son, were presented with only the timeline being unpredictable. From that point on, Mark and I vowed to recognize the importance of each occasion we are lucky enough to celebrate with Theo.

Today was Mark’s birthday, and today we celebrated another special occasion with Theo. This is not where he thought he would be at 32 but when he bent down and kissed our son’s forehead after he blew out his candles, part of me was thankful that this is exactly where we are.

Today’s miracle is Theo in his father’s arms, blowing out candles and making birthday wishes.

Small Town, Big Heart

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I grew up on a farm, a ten minute drive from the nearest small town of Harrow, Ontario. My mom and several family members still live here: my great Aunt operates a local business and my cousin’s husband pastors our home church – the church Mark and I were married in, the same small church where my parents avowed their love and commitment 28 years earlier.

Canada’s small towns are slowly disappearing – being amalgamated into larger municipalities and this is an unfortunate loss to the Canadian landscape. Small towns are ubiquitously defined by their character, comfort and community. This is not to say that larger metropolitan areas are deficient  – after having spent the last 10 years away from home, I recognize that the modern conveniences associated with larger population centres have their benefits but I am always grateful for my roots and the sense of community intrinsic to these smaller areas.

When my brother and sister-in-law, both employees at TD in nearby towns, informed me that the TD bank in my hometown was organizing a fundraiser for Theo and our family, I was humbled with gratitude. Life has carried me away from my home and still these individuals selflessly devoted their time and effort to us – exemplifying the caring, supportive relationships that lay a foundation for a true sense of community.

The small phrase Thank You seems largely inadequate. Theo became sick one week after I returned from maternity leave, and both Mark and I have been off work since that time. Our focus these last two months has been Theo’s care – when you’re told to expect your son’s passing at any point, it leaves little room for much else. But in the back of our minds, our current and future financial state allowed additional worry to infiltrate. The generosity from my hometown has provided more that just assistance during a difficult time; it has provided us with peace and assurance.

When Theo is strong enough to travel for more than short periods of time, I look forward to taking him back home for a visit – to the small town with a big heart.

Miracle Mondays – New Friendships

 

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It would be impossible to spend any amount of time in a pediatric ward and not have your perspective on life altered. Ours certainly was.  I’m not a stranger to tragedy and I’d like to believe I didn’t take our previous life for granted but I don’t think I truly appreciated how blessed we were until just recently.

The many (too many) innocent children we met have involuntary traded playgrounds for hospital rooms. They have been deprived of things that would break any one of us: their appetite, mobility, cognition, enjoyment, recreation… and yet their resilience and spirit is enviable.

One little toddler holds a special place in our hearts. He was brought to PICU at McMaster the same day Theo was, when we returned 3 weeks later, our rooms were next to each other, and we were discharged out of hospital the same day. While there, we became good friends with his great grandmother who never left his side. We shared the ups and downs of our similar journeys: disappointing MRI results, critical surgeries and procedures, small yet positive indicators of unpredictable recoveries. She embraced us like family, understood our struggles when others couldn’t, celebrated each of Theo’s milestones, and encouraged us daily to never lose hope.

This little soldier has a long road ahead of him, as do we, but his recovery so far has inspired us to believe that the impossible is possible. We tuck Theo in each night with the hand-knit blanket his great grandmother gave us and we say an additional prayer for him. We miss them and I truly hope our paths cross again one day.

Today’s miracle is celebrating new friendships, however ephemeral, for their unique purpose and perfect timing.

Happiness

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We’re slowly adjusting to life outside of the hospital. It’s been a more difficult transition than we anticipated– home care services are still being organized so in the meantime, Mark and I have been managing all of Theodore’s care. Theo needs constant monitoring and his schedule requires us administering medication every 2 to 4 hours, which means we’re receiving much less sleep than we did in the hospital. Transferring back home was definitely the right decision for us, and in due time, I’m sure we’ll have an appropriate schedule determined, but our illusion of the comforts afforded by home care has yet to mirror our reality.

Today is International Day of Happiness: a day to celebrate the happiness in our lives. Happiness is individually perceived and interpreted and means something different to each of us. Irrespective of your source of happiness, today is a reminder to savour the many happy moments surrounding us, even during the most difficult times.

Yesterday our little boy turned 14 months. Before I was a mother, I never quite understood why moms would measure their toddler’s age in months, rather than years. And, now I’m embarrassed by my ignorance. Our babies change so much each month and rounding their ages would deny the significance of their precious milestones from one month to the next. At 12 months, Theo was on life support. At 13 months, Theo was breathing on his own; his kidneys and liver functioning. At 14 months, Theo smiles, has regained some head control, and is showing improved swallowing and coughing reflexes.

I also measure Theo’s age in months because each month and day he’s with us is not only a milestone but a miracle.  His smile is the source of my happiness today and every day.

No Place Like Home

We’re going home tomorrow!

Theo’s diagnosis or prognosis hasn’t changed but we’ve been talking with our team here over the last week about our options and determining what’s best for Theodore. There are no medical interventions or treatments necessary for Theo at this point; our focus has been and will continue to be the relief of his pain and ensuring he is as comfortable as possible. And we believe that the best decision for our family is a return to the comforts of home.

We’ve made the difficult decision not to return immediately to Timmins but to stay here temporarily with family as we closely monitor Theo’s status. Theo will require the support of his palliative team and therapists at McMaster and will need to be followed by specialists for the monitoring of his limbs. There is also a serene and highly recommended hospice house not far from here.

As you can imagine, this has not been an easy decision. Our jobs, our house, our friends…our entire lives…are back home in Timmins and we were really looking forward to returning home as soon as possible. Since Theo’s sudden illness, life as we know it has been flipped upside down and we’re still waiting for it to right itself again. I achingly miss the normalcy of our past but we’re learning to adjust to our new normal and Theo receiving the care he needs is first and foremost for our family at this time.

Mark and I have already begun our nursing crash course – learning how to suction, checking the placement of Theo’s NG tube and operating the feeding pump, changing his dressings and mixing and administering the many medications that he receives.

We’re nervous about this transition but after two months, we’re ready to say farewell to the hospital. Theo will still require extensive nursing care and therapy at the house but we’re excited about what this new normal means for us: springtime walks with Theo and Ruby, sleeping in a bed and eating home cooked meals, painting eggs with his cousins, the three of us sitting at the table enjoying Easter dinner with our families.

Star Light, Star Bright

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Stars shine brightest on the darkest nights.

Theo’s breathing is still struggled. When he’s awake, we spend his days repositioning him to help open his airways and massaging his jaw and facial muscles to optimize his tone and encourage his swallowing reflex. Over the last week, he has started vomiting frequently, which our doctors suspect is either a side effect of a respiratory infection or an intolerance to his feeds but every time it happens, we’re on high alert for a potential aspiration event.   We continue to live each day dichotomously: joyfully celebrating that Theo has surpassed expectations and fearfully accepting that it could also be his last.

There have been days over this last week where I am unjustifiably angry. Angry that my son has been deprived of a normal life. Angry that when he cries out in pain there’s little we can do to help him. Angry that the unknown woman I saw on the sidewalk laughing continues to go about her life as though nothing has changed.  Angry that the sun continues to rise for the rest of the world when our days are still dark.

But on the darkest of days, I look up and I see the stars – the many Teddies above Theo’s hospital bed. These bears are symbols of hope, encouragement and strength; messages of love and support, heartfelt prayers and best wishes from your homes and hearts to ours.

You have infused our life with hope and love. From every corner of our hearts, thank you. Thank you for sending these stars to fill our dark sky.

Miracle Mondays – A Heartbeat

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We heard the heartbeat of our second child for the first time while Theo was still on life support.

When we first found out we were pregnant again, we were ecstatic. Our family of three was soon becoming a family of four and our life felt incredibly blessed and perfectly complete. I excitedly envisioned some of the moments that would construct our new future:  Theo meeting his new brother or sister for the first time, teaching them how to crawl or throw the ball for Ruby to fetch; the two of them outside with Dad skating on the backyard rink.

Now, our new future is unfolding and adapting day by day, moment by moment. There have been times over the last two months that this pregnancy has unjustly fallen into the shadows of our life’s current chaos and I struggle with the new unknowns that it presents. How will I devote enough of my time and energy to Theo when the needs of a newborn are just as great? Will this child even meet their older brother? If we had not already been pregnant, would we have been ready for another baby?

But as I feel the stirring of new life inside me, I am grounded by the love I have for this baby and am reminded that the unknowns are irrelevant. Life will unfold for us as it will, and the one certainty I have is that our family’s new future will be defined by love and strength.

I humbly and gratefully view this pregnancy for the miracle it is and for the hope and joy it will provide us.

Carry Me

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Mark has been back at home, taking care of things around the house, for the last five days. I’ve been on my own at the hospital, aside from the occasional break from family members to run back to our room for a quick shower. I miss him and I’m feeling a bit burnt out but I realize how lucky I am that I’m not alone.

When I walk the halls in this pediatric unit, I see the familiar worn-out faces of parents and grandparents who have been here for at least as long as we have, some without relief.  In the quiet of the night, I see the same single parents in their slippers and pajamas who face another night of this journey alone.

I recently read that married parents who have lost a child or have a chronically ill child have an exponentially higher divorce rate. And, when we returned to Timmins, our pediatrician and social worker warned us that in situations such as ours, they’ve seen the dissolve of marriages with some of the strongest couples. It’s not surprising that marriages are tested during times like these.  It’s easy to see how most relationships fail, some exist and even fewer excel.

This is mostly attributed to different grieving and coping methods between partners and differing opinions on medical treatments and interventions for the child. I’d be lying if I didn’t admit that we’ve had and will continue to have some difficult moments.  Mark and I are different people and not surprisingly, we grieve in different ways. And, we’ve had and will continue to make challenging decisions about Theodore’s care – decisions no parent should have to make. Thankfully, we are always in agreement but that doesn’t necessarily make things any easier.

I’ve been told of the strength that I’ve demonstrated over the last two months but it’s Mark’s strength that humbly carries me when I can no longer stand.

It is Mark who sleeps in the pullout chair at the hospital, insisting that I return to the room each night so I get some rest. It was Mark who first returned to our home in Timmins and tearfully packed away Theo’s toys because he knew it would be painful for me to see when I returned. It was Mark who sat in on rounds each morning and would meet with one of the many specialists bombarding us with more disappointing news, when I couldn’t bear another conversation. It was Mark who made the flight from Timmins to Hamilton alone (while I flew with Theo who was in critical condition at the time), not knowing if his son would still be alive when he landed. It is Mark who lies next to our son when he cries out in pain each night, rubbing his head until he falls asleep.

I’m thankful for the strong husband and father with whom I face each day. We are not naïve, we know this journey will test us but I have to believe that our vows are indissoluble and our strength will carry us.

Teddies for Theo

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For those of you who don’t know me, I am Ashlee’s sister, Brittney, and an Aunt to the adorable little warrior, Theodore. Like many of you, Theodore and his brave journey have touched my life in such a significant way.  With every day that passes he renews my faith in miracles. 

Mark and Ashlee have temporarily relocated from Timmins to the Hamilton area while Theodore receives care at McMaster Children’s Hospital.  Thank you for your constant support during this difficult time – Mark and Ashlee read each and every one of your comments and are in awe of the love and support you’ve shown.  It gives them the strength they need to face the tough days and reassures them that they’re never alone in this journey.   Many of you have contacted us asking how you can help Theodore, Mark and Ashlee and Teddies for Theo was developed to assist in Theo’s journey.   With each gift, a teddy bear with your words of love and encouragement will be placed in Theodore’s hospital room. Thank you for keeping our family in your thoughts and prayers.

To participate in Teddies for Theo, click here