As my 50th birthday approaches, I am learning to ride a bike for the first time.

Some of you may think this odd. For those who do, I could say, as my 2nd birthday approaches, I am learning to ride a bike for the first time. Sounds much more impressive, doesn’t it? In fact, both statements are true.

This August, I celebrate my 50th birthday. The following March, my body and heart celebrate 2 years of revival. For those of you who do not yet know my story, a whole new life began for me on March 10, 2012 when I received the gift of a new heart. Today, Little Heart beats happily in a body that has never before had the strength to ride a bike. So who says you can’t teach an old(er) dog new tricks?

Riding a bike is not the only first of my life. This new heart of mine has taught me other things as well. My sense of balance is improving daily, and for the first time in my life, I can walk as fast, if not faster than some of my friends. I even attended my first Congenital Heart Conference a few weeks ago, and learned what life can be like for non-congenital parents of congenital heart defect (CHD) children.

My husband and I are parents of two congenital children, and yet, I was quite surprised to learn that my worries as a mother are far different from those of a parent who has not yet learned to live with the diagnosis. When my children were very little, my worries ran along the lines of what if my son never gets potty trained? What if my daughter won’t stop biting? My son turns 11 today, and yes, he is potty trained. Has been for some time now. And yet, when he was going on four, and still wearing his pull ups, I was beginning to … well, for lack of better words, panic! When my daughter was biting every friend she met in pre-school, plus her own brother every chance she got, I have to confess, panic was setting in again.

I sat in the CHD conference and listened to the tearful worries of mothers who asked, “how do I leave him with a sitter when he could stop breathing at any time?” and “how can I trust a teacher to look after my fragile little girl, when I’m the only one who really knows what symptoms to look for if she is in distress?” I glanced over to my own mother, who was also in attendance. She shrugged. Perhaps she was simply too young of a mother to truly realize the dangers of sudden cardiac failure – the number one symptom of CHD patients. Perhaps I’ve lived such a graced life with my condition that I too do not see the danger my own children could face.

And yet, I ask myself, do I wish my children to live a life of joy, or a life of fear? As a CHD, and a mother of CHDs, I have learned to approach every day, the same way I am now learning to ride my bike. I look at the bike, I straddle it. I find my balance. I push off.

It has taken my body nearly 50 years to come to the point where I can achieve balance. Like most every other person, I have juggled my own health issues, a career, marriage, and children. The fact that my children are slightly different from other children is simply not a big issue.  If there is anything I can share with parents of children with CHD, it is this – all children, all people, come with their own unique gifts. In 1963, I was born with a rare and deadly form of CHD. I not only survived, thanks to parents who allowed me to be exactly who I needed to be, I thrived. My children have CHD. They run. They play. They fall down, a lot! And lately, in learning to ride a bike, so have I!

Raising children with health issues of any kind requires more than love. It takes acceptance and balance.  As I sat at the conference, I looked at all of those beautiful CHD families, and made a promise to myself to connect with as many as I could. I looked for their balance when speaking to them about CHD, and hoped, that as my own family had, other CHD families would push off from the conference with a renewed understanding of the gift they had been given.

My morning walk is for me a moving meditation.  No matter the weather, snow, wind, or sunshine, something always captures my attention, and reminds me that we are all one in the universe. This morning was no exception. Though it was chilly, Mike and I could feel a touch of spring warmth as well. Our walk was extra quiet as Harry had spent the night with his favorite aunt and uncle and was still there, no doubt sleeping in!

Arriving at the shop, I kissed Mike goodbye and turned to walk home when I noticed two birds sitting side by side in a tall leafless tree. No longer cuddled up for warmth or fighting over a bit of something edible as they were typically spotted throughout the cold winter months, these two appeared to sit together for the sheer pleasure of it. Twisting their heads to gaze at one another, they were in complete harmony. The way that they looked at one another, the obvious commitment they had to one another, and their simple calmness lead my mind to thoughts of my own relationship with my mate.

During the organized chaos of most mornings and the stillness of the nighttime, like the birds in the tree, Mike and I find solace in the presence of one another. Similarly as well, from time to time, Mike and I can also be found squabbling over one thing or another. And yet, again like the birds, when all is calm, when one of us is in need, or when the night simply presents itself, more often than not, we return to our loving state.

Everyday I a reminded of how the world around me is a reflection of the world within my own private space. I give thanks to God and the angels for paving my way to Auckland’s North Shore. And for the shove they gave to send Michael my way. Experts say that birds find one another through a innate ‘radar.’ I believe it’s all part of the divine plan. How else could Michael and I found one another from opposite ends of the world? Nearly seventeen years later, while our everyday lives may not always be perfect, our life together, and love for one another remains in perfect balance.

Do you know your lovebird? If you do, give thanks everyday for that beautiful person. If you don’t yet, give thanks for the beautiful person yet to grace your life.

The angels see no time. They know no place. They only know what is in your heart. Thank them for your heart’s desire, and in time… in perfect time, they too will lead you to your lovebird.

It’s been a year since my transplant surgery. What a difference a year makes!

Last year –

My husband, Mike woke from a restless sleep. His brain was still fogging from the turmoil of packing bags, piling into the car, and driving for hours through blinding snow. In a private ICU waiting room, his aching muscles protested the nerve pitching contours offered up by the uncomfortable hospital sofa. It had been a long night, with a longer year yet to come.

At 3:00 am, having awoken from a restless sleep, my mother, Yvonne, and soul sister, Antje, were already in the main waiting room. Leaving the tiny family packed Toronto apartment, they ventured out into the cool chill of the morning air. Walking four city blocks they waited for hours in the quiet hospital ICU.

Antje would later recall the brightly shining stars and the clear full moon in quiet whispers that only she and I would remember. “Haniel is watching over you,” I heard from within a drug induced sleep. In that moment, I saw the archangel named Haniel looking down at me through a window behind my head, telling me all was well.

My children, Riley and Kate demonstrated the behaviour of children much younger. Falling asleep hours after leaving the hospital, they showed the terror of losing their mother in unexpected stages of hyperactivity, lack of consideration, and finally tears. Tears at least from Kate. Riley, my big tough boy simply withdrew. By morning his pale skin had turned ashen, his temperature rose, and fear presented itself in the form of a stomach flu.  To this day, neither chose to recall that night.

My sister-in-law Paula, then six months pregnant, had settled her head on an air mattress which had been firmly squeezed between the stove and the dishwasher in the short narrow kitchen of the tiny Toronto apartment. This was the start of a long journey for her as well. A nurse by profession, Paula would spend many of her free hours over the weeks tending to me. Whether she was assisting me with daily tasks or simply holding my hand, Paula was a genuine source of love and laughter. She saw the beauty in it all.

New Heart Eve: an hour before surgery.
From left to right: Kate, Mike, Riley and I, my mother Yvonne, my father Ron.

So many others came to squeeze themselves into that tiny apartment that night. My father and step-parents Marie and Brian cared for my babies, and watched me during my long sleep.  My sister-in-law, Janna stood over me and held my hand. She never knew (until now) that I saw the love in her eyes, and heard the gentle whisper of her voice.

Last year at this time,

A family spent a sleepless night. They wept for their loss. They remembered the happy times, and despaired for the sad ones. They said goodbye to their child, their loved one, and in doing so, reached out to save another.

Last year at this time,

 A brilliant team of surgeons came together from the transplant unit at The Hospital for Sick Children and Toronto General to stand over two people they didn’t know. They used their combined skills to protect the heart of one in an effort to save the life of the other. With precision hands and loving hearts, they worked fourteen hours, until the transfer was complete. Two days later, I opened my eyes, squeezed my mother’s hands, felt my husband’s lips on my forehead, hugged my children, and smiled at my doctors.

Today I celebrate my 1^st heart birthday. Friends and family gather to honor me with a ‘pink party.’ I hold my new niece. I hug my friends. I kiss my family. I honor the heart that beats inside of me. Today, I hold a quiet vigil by celebrating the life that allowed me to do it all.

In memory of my beautiful donor who gave me life and remains with me always. 

It was a brisk -6 degree morning.

Contrary to the early morning weather report that the temperature would feel like it was -9 with the wind shield, it actually felt warm as I strolled home from walking Mike and Harry to the shop.

Though you can’t quite see the amazingly round sun eclipsing the clouds, you can see the raw beauty of the morning sky. It was as though I was looking at a perfect full moon framed by grey white clouds, and I felt as though the eyes of something truly divine was watching me as I moved down the quiet road.

Reminding myself that benevolent souls guide us and protect us at all times in our lives, I smiled at the notion that from time to time, on blissful mornings like today, we are also blessed the gift of their beauty.

Instead of blindly following the doctor’s orders, my mom not wanting me to live in a bubble, did her research and made her decision as to how to proceed based on what she felt was best for me.

This paraphrased statement was taken from Bill Coon, author of the incredible memoir, SWIM during one of his many book tour talks. It could have easily been a statement I made about my own mother, or one my kids will one day make about me. In fact, it could have been a statement taken from the conversation I had this morning with the mother of my son and daughter’s close friend.

Whether it be a medical condition, an educational situation, or a social event, moms have been looking out for their child’s best interest since the beginning of time. So how is it that we have allowed our medical and educational system to decline to the point where your child is not getting the education or medical care he deserves?

If you are a doctor or a teacher reading this post, please don’t take offence to what I am about to say. This post is not directed towards you, but rather in support of you and every parent seeking the best for their child. Having physically grown up within a medical community, and having for many years been part of an educational one, I can tell you, I have no greater respect than for teachers, educational assistants, and nurses and doctors. Each and every day, they put themselves out there in hopes of changing a life for the better. And yet, they work in what I for one believe has become a corrupt system. Money speaks volumes in a commercial world where need takes a seat at the far end of board room decisions.

An example of this is the endorsements made by our medical community for more and more vaccinations and flu shots each year while refusing to support alternative or naturopathic therapy. Doctors all have an opinion on this rather grey area, but many choose to tow the line in support of inoculation, and why wouldn’t they? They have been told for years now that without a flu shot, the patient is playing Russian Roulette with their healthcare.  Pharmaceutical companies love to push shots, and why wouldn’t they? They get paid for each one that is administered. Money (especially pharmaceutical money) speaks volumes, whereas need continues to take a back seat.

While the education sector may not be getting kick backs from wealthy pharmaceutical companies, government funding meant for allocation based on the needs of the individual child is rarely used for individual resources in our classrooms. The teacher/student ratio may have dropped slightly in the past ten years due largely in part to allocation of funds, but so too has the quality time your child gets to spend with his or her teacher. For instance, and I’m just talking for instance here, educational assistants who were once assigned to a child based on his needs have been reduced to the point that one or two EAs now care for school communities where their once were four or five on staff. Where your child would have once received necessary EA time, there are simply not enough of these wonderful child care workers to go around.

I have always contended, my job as a mother is to advocate for my child. Let’s face it, if I don’t, who will? My children’s doctors and teachers are loving, caring individuals. They tirelessly work towards keeping our children healthy and developing their minds, and yet even in these two enormously important sectors of our society, money speaks volumes, forcing need to the back seat.

Worse still, if you happen to be one of those individuals who work for a corporation with an insurance plan option to have your child’s educational development assessed, this $1500 plus undertaking simply purchases your child a spot on a waiting list. After a year or so, your child may undergo a series of reading, writing, special awareness, and mathematical tests, at the end of which, you will be given a report. Now, with an expert opinion on the best approaches to educating your child in hand, you run, not walk to the school. Thinking you have found the holy grail to your child’s education, reality sets in when your teacher explains to you that there is still no funding for an educational assistant for your child.

The politics of medical care and education in North America have gotten to the point where all mothers, fathers, teachers and doctors need to ask those who sit on our governing committees, Do you allow the needs of YOUR CHILD to take a back seat to money?

Instead of blindly taking the advise of doctors who said Riley would never be able to eat properly, my husband and I assessed our fifteen month old son’s ability to suck water and juice from a bottle, sought advise from alternative practitioners, and fought in support of having a feeding tube permanently removed.  It was a long, hard process, but today Riley is a strong, healthy hockey playing, milk drinking boy.

Refusing to accept that my daughter would never read, as so many of her primary teachers believed, Mike and I took her reading challenge on ourselves. Committed to finding the best way of teaching her to read, we used the trial and error method. With the assistance of a few really incredible teachers, Mike and I have spent hours and hours of one-on-one time teaching Katie how to decode, how to make up stories, how to illustrate her ideas, how to follow a story-line, and so on. Now in grade 4, Katie is at a beginner’s reading level. She can decode small words, she completely comprehends story-lines, and she is a great little story-teller!

My children will never live in a protective bubble, nor should yours. Your child deserves the best medical care and the best education. There are so many ways for you to make this happen. There are so many more ways, we as parents can make this happen together. Is your child worth it? I know mine is.

Angel Thinking.