Hi, I am Lindsey. A mother, a wife and a student of life’s lessons.

I sometimes look back at the girl I was before 25, where a line was drawn in the sand to indicate who I was then compared to who I am now. I reflect on how I felt weightless and open and optimistic, and how that would eventually transform to feeling heavy and fearful and overcome by the need to calculate and control all that I could.

Motherhood came in softly and beautifully if not a little complicated. But the reality of being a mom to this squishy-faced baby that had the doctors baffled came in fierce and fast. In a moment I was changed. The innocence of the girl I was had vanished. My baby was sick, and no one understood why.

Where I once wanted to talk about everything and craved the opinions and stories and voices of others, I now needed silence. Silence from everyone I once trusted and enjoyed. There was no room in my head for the words of people who didn’t have the answers or know what to do. My brain became fixated on every syllable of this new medical language that would become the code to understanding what was happening with my baby. I hung on doctor’s words, memorized every value, wrote down every step forward and backward and didn’t dare deviate from the plan. This is how I would spend the next nine months of our first admission. Not knowing day from night as our hospital room had no windows. I only knew that nothing mattered except for the health of my baby.

As the months wore on and we were airlifted to different hospitals on the other side of the country and to the United States I became fixated only on what was needed for him to survive. My days and nights were spent praying and helping change his many lines and tubes in a quest to nurture and love and care for him. I watched as our family, our church and the city rallied around us. I watched others reading about him on the front page of the local paper.

Everyone wanted to do something, everyone wanted to help… but it felt like no one really understood. Advice and stories of other babies were shared with me, positive encouragement about how it was all going to be OK was dolled out at every exchange. And with each passing day that I would watch my baby grow weaker, I felt myself retreat further into my own world because in the solitude of my head it was quiet. The quiet didn’t say the wrong things while meaning well, it allowed for me to replay over and over and over again his latest labs, scores, weights and test results. In my head, I could say the words out loud. The words that whispered, “what if he doesn’t make it?”

I would eventually find a rhythm and a sense of normalcy between the quiet time in my head (that I craved to process) and the adrenaline-rich rushes that came with an acute episode, where I was forced to stand back and watch the medical team do the things that I could not.

Eventually, nearly a year after he was born, I would walk into the house with him for the first time with a plan to stay. He came with a 24-hour feeding pump, highly specialized formula, lists of doctor’s numbers, follow up appointments, feeding instructions, medications, a team of nurses, therapists and nutritionists, a body riddled with tubes and scars and a smile that could melt you on the spot.

What he didn’t come with was a diagnosis, a guarantee, the hum and song of the monitors and machines that I had come to rely on, that intoxicating baby smell (it was replaced by hospital tape, plastic tubing, and predigested enzymes), a bottle (he couldn’t suck). This baby didn’t need or require or adhere to one word of what I had read about in the months of devouring “What to Expect When You’re Expecting”. We had our own language, our own set of rules and schedules and plans. And we were to fit that all in between hospital visits, home-care, and all the hours of silence.

At first, the familiar silence felt safe, it felt organized and planned for. When it was just us and it was quiet, I didn’t have to hear others say, “oh he’s doing so good now”, because the truth was…. He wasn’t really good, he just wasn’t dying today, he was at home and not admitted but that didn’t mean that he wasn’t still receiving all the same treatments and interventions.

Eventually, the silence would change for me altogether, as the time between admissions lengthened. Where once it provided a safe place, now it was a deep and cavernous pit where I was forced to look at what we had just been through. I no longer knew how to relate to other mothers. It was assumed that I should be ‘good’ now because things were improving and he was getting stronger. But the truth was I had learned to cope best during the acute events. When things were chaotic and scary and happening fast there was something to do, I was numb to the fear as there was no time to ask questions, there was no time to think about the future and the what ifs. But when the acuity turned to long chronic weeks and months there was too much time to think, to recognize how we didn’t fit anywhere (not in a diagnosis box, a playgroup or with our friends).

Fast forward two other medically complicated babies and some medical complexities of my own and I was becoming the poster child for medical mothers. I was speaking at hospital events, attending galas and helping other parents through their journeys, and was becoming known for how ‘strong’ I was. But the reality was that the shell I had created around myself was just becoming so shiny and strong that my heart was no longer penetrable. I needed a change I just didn’t know what it should look like.

And then a few years ago, we got the courage to take a leap. We packed up everything and moved to the country – a long-awaited dream finally propelled into action after the loss of function in my hand due to a tumor. I needed a purpose beyond the things I couldn’t do. I put the logistics aside about things like how many kilometers we were going to be from the Alberta Children’s hospital and all the other what if’s…

We longed for space, for connection to something natural rather than synthetic and for the first time in a long time, for me I wanted the quiet – because I have learned to use it as a place to reflect but not dwell, be still but not paralyzed.

I am now learning to once again welcome the noise of the world, to let myself be in its chaos and know that the energy in it means life and the vastness of it means hope.

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