Uncategorized

Happy Birthday, My Son

My dear Theodore, today we celebrate your second birthday. We will bake a cake, light a candle and make a wish. We will celebrate the day of your birth, your precious life, and the ways that you’ve forever impacted ours. But today, I cannot wrap you tightly in a birthday hug, wipe the cake from your cheeks, or kiss you goodnight after unwrapping your presents. Today, you celebrate your second birthday in Heaven.

My sweet boy, there are so many things I want to tell you today.

You changed me. From the very moment that I felt the weight of your tiny body in my arms, kissed your sweet cheeks and gazed into your big blue eyes, I knew my life was complete. We waited to find out your gender but I knew in my heart that you were a boy. I had always dreamt of having a son, and you instantly made me blissfully happy.

You weren’t the easiest of babies; you never slept through the night, refused the bottle and it often took Daddy and I hours to rock you to sleep but to us, you were absolutely perfect. Some of my favourite moments include you cuddled up to my chest, breathing softly with milk trickling down your cheek, as I sang to you in the moonlit hours of your nursery. As a baby, you were always smiling but at your happiest when you were swimming with Daddy or dancing with Mommy.

I am so proud of the little boy you became. You did not have an easy life, my love, and no one should have had to endure the magnitude of suffering handed to you but you were a fighter. You defied death and persevered for seven months after being told you wouldn’t survive the night. You were taken from this world long before you should have but you left a legacy. I am honoured to be your Mommy.

You left very big shoes to fill but Freddy will grow up hearing stories of his heroic big brother. He reminds me so much of you, Theo. I see you in his smile, the furrow of his brow and the easy way he startles. It is a blessing that every time I look at him, I see you. And, he may not know it yet, but he is incredibly lucky to have you as his big brother. No one else will watch over and protect him like you will.

Your illness took so much from you but I know you never lost your ability to feel love and experience life. I saw it in the subtle way your eyes would open, your lips would soften and your muscles would relax when Mommy or Daddy wrapped their arms around you, a warm breeze brushed across your face, or soft music played in your ears. We didn’t needs words or gestures to communicate with each other; I understood when you told me that we wouldn’t have much longer together. Thank you for these signs Theo, I know you were sending them so we could get Daddy home in time to say goodbye.

I’m doing the best I can, baby, and I’m trying to stay strong for Daddy and Freddy. I draw my strength from you on the days when I don’t want to live in a world without you.   Please don’t worry about Mommy and Daddy, though. We will continue to miss you every minute of every day for the rest of our lives but we are happy that you are now free from all pain and suffering and a life that was unfairly handed to you. We will always struggle to live without you, Theo, but our grieving hearts carry beautiful memories of you and the guarantee that we will meet you again in heaven.

Now, do Mommy a favour: go tell Grandpa you’re allowed to eat nothing but candy and birthday cake today. Skip your nap and spend the whole day running around and playing with your cousin Luke, and all the other angels. Be free, my child. Breathe freely, run freely, laugh and smile freely. And, if Heaven is as I imagine, when you blow out your birthday candles, you won’t need to make a wish because all your dreams are already fulfilled.

Happy Birthday, Theo. We love you and miss you today and always.

DSCN2643 DSCN2706 DSCN2713

Auld Lang Syne

Today, we bid farewell to the old year and welcome in the new and as is the case this time of year, we reflect and resolve.

2014 was a year filled with pain, grief and sorrow but amidst it all, there were also moments of beauty and joy. I am not the same person I was last year; I have since watched my little boy fight for his life and take his last breath. I also welcomed my second son a week and a half after burying my first. And, I have learned the following:

Life is to be lived. We knew we didn’t have long with Theo but I am forever grateful that the memories we have with him are not exclusively of a hospital. Our remaining time with Theo was spent travelling to the top of the CN Tower, visiting the zoo with his cousins, taking in the beauty of High Park, even going for a swim. We tried not to let his palliative condition deter us from living life. Theo defied death multiple times and in his short life, he lived and inspired. His strength and perseverance encouraged others to see the beauty and miracles present in each of our lives every single day.

Family. Everything else is insignificant. Over the course of Theo’s illness, we lived in several hospital rooms and later slept in a bed next to his crib in a family member’s dining room filled with his medical supplies. We sold our family home, left the community we laid our roots in, and had no choice but to leave the jobs we loved. We worried about how we would pay our bills with Theo requiring such complex care. And yet we have no regrets. Every decision we made was because of Theo and so that we could be together as a family. And there is nothing more important in this world.

True love is unconditional. True love is raw, vulnerable and unfaltering; it is not something that is seen or even heard, it can only be felt. During Theo’s illness, he taught me what it means to love unconditionally. I am a kinder, more patient person because of Theo and this has made me a better mother, a stronger wife, and a gentler individual.

We are not alone. People are inherently genuine and compassionate. They are selflessly generous and ready to help. My community, small in numbers but not in heart, has embraced my family and carried us through our most difficult time. Countless strangers have expressed empathy to our family and bereaved parents have wrapped their arms around us. There will always be those individuals who are too scared by your grief and pain to offer support but fortunately they are outnumbered.

There is life after death. Every morning, when I look into Freddy’s eyes, I am reminded of this. Life must endure but it will never be the same. The death of a child leaves an emptiness that cannot be filled: an emptiness that is consumed with tears and loneliness and longing to hold them in your arms again. I now live partly in this world and partly in the next because a part of me is already in Heaven. And, I no longer fear death in the way I formerly did because it means a joyful reunion with my sweet Theo.

Theodore lives. Theodore is still with us. We carry him in our hearts and in the many memories we have of him. He left a legacy for Freddy who will grow up hearing stories of his brave big brother. And he finds signs to show us that he’s still with us, still making miracles. I will forever be Theo’s mother, his departure from this earth doesn’t change that.

In 2015, I resolve to love and cherish my boys in every way possible and ensure that Theo’s memory endures. You will never be forgotten, my son.

DSC_1170

Five Years

Although we are apart, today we celebrate our five year anniversary. Five years of laughter, adventure and tears…five years of good times and bad.

Five years ago, when I held your hand and confidently repeated our marriage vows, I envisioned the many beautiful moments that would define our life together.

We would wake up beside each other each morning and fall asleep in each other’s arms at night. We would sign the offer for our first home and build our future in a community abundant in friendships and opportunities. We would hold our child in our arms for the very first time and later watch him grow and learn with pride. We would have a house resonating with the sounds of children’s laughter and footsteps.

I have to confess that although I vowed to stand by your side through the good times and the bad, I wasn’t prepared for the bad. Five years ago, when I held your hand and innocently repeated our marriage vows, I failed to envision the many difficult moments that could define our life together.

We would forego waking up beside each other so one of us could sleep by our palliative son’s bedside each night and later we would have to live apart for weeks at a time. We would have to sell our first house and leave the city we called home. We would hold our child in our arms for the very last time after watching him suffer for seven months. We would have a house resonating with our son’s cries and filled with medical equipment and nursing staff.

This last year has presented us with our biggest challenge as individuals, parents and as spouses. We have learned the depth of our commitment and what it means to really love one another. Five years ago, I had a naïve, romanticized notion of love. Today, I know that although love is celebrated during the good times, it is strengthened during the bad: during long hugs at a hospital bedside, the tight grasp of a hand while listening to devastating test results, and the shared tears at a burial site.

The love that we share is far from perfect but it is real and unyielding.

We have had no choice but to evolve as a couple, our original innocence matured by our shared experience. Today, when I look into your eyes, I see our two sons: the pain of our past and the hope of our future. This will not be an easy journey, but nothing worthwhile in life comes easy. As we grieve independently and grow as a couple, there will be as many tough days ahead, as there are behind. My only vow to you is to continue walking beside you every step of the way. Until my last breath.

I wasn’t prepared for the bad but I’m not convinced anyone is. I do know that there is no one else I’d rather have by my side. Together, we will continue to find joy in life’s beauty and face its inescapable sorrow. And our love will always be enough.

To life and love. Happy Anniversary.

1915449_350784390045_3021501_n

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.

DSCN1971

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.

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 – A Warm Embrace

photo-2

I meant to post this last night but I didn’t have much time to step away yesterday. Mark left early Friday morning to take care of our house and Theo came down with another respiratory infection Friday mid-day – causing persistent vomiting, laboured breathing, sleepless nights and even more discomfort than he normally experiences. With Theo’s medical team’s support, we stopped his feeds, adjusted his medication, suctioned him constantly, and monitored him closely. I couldn’t leave his side and Mark anxiously kept a close eye on flight schedules.

I’m very happy to report that Theo appears to be recovering today: the vomiting has subsided, he’s back on regular feeds and has spent the last day sleeping comfortably!

I don’t know if we’ll ever fully adjust to our new life: having a chronically ill son who requires constant medical care and attention. But the physical demands of our new normal will always be easier to adapt to than the emotional demands. Sleepless nights will never compare to tired hearts. And, the emotional demands are always hardest for me when Mark is gone and I have to shoulder them individually.

So, when my Aunts showed up for a visit this weekend, the timing couldn’t have been better. Their hugs, hope and homemade cookies eased my mind (and stomach) and allowed my tired heart to rest.

Yesterday’s miracle was a warm, loving, embrace for Theo and myself when we both needed it most.

Small Town, Big Heart

1966953_10153962192055182_1952170501_n

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.

Happiness

IMG_2801

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.