Month: July 2014

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.

Theo's Benefit - Family Pic
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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.