Our son was already six weeks-old the first time he made his grand entrance into our own home. We had spent six weeks riding the emotional rollercoaster that is the life of a NICU parent yet the moment we set foot in our home the world expected me to – poof – be better.
I wasn’t.
In the days after his birth when the ambulance rode off, sirens blaring and carrying my baby in the back, I instantly became a part of a club that I knew nothing of. There was no experience required to join this group; no rule book, no instructions. An unspoken energy of support was constantly flowing throughout the parent waiting room at Sick Kids Hospital. Eye contact was minimal; we respected each other’s privacy. When one of us broke down and succumbed to our fears, the rest of us quietly stood by offering our support without even saying a word. All of us were in this thing together and the end goal was to get our babies home.
Yet once our son came home my real battle would begin. The loneliness consumed me. It wrapped itself around me and tightened its grip leaving me short of breath. Fear forced itself into my everyday life; it was stronger than I was and much craftier. It appeared in the middle of the night when I had let my guard down and escaped in the screams that interrupted my nightmares.
Instead of feeling supported and understood, I felt judged and alone. “You need to get over it,” they said. “Let it go.” In their minds he was home and it was over.
“What do you know?” I wanted to scream at them. They weren’t there when the doctor explained to us that his heart had stopped beating during surgery. They weren’t told that they couldn’t touch their brand new baby because his breathing tube absolutely couldn’t be moved. They didn’t see him all bruised and tubed and tiny. Who were they to tell me how I should feel, when I should heal and what I should do to get over this hurdle?
Most new mothers have no idea how important oxygen levels are. They aren’t measuring out medication in tiny little syringes to give their infants. I loved meeting new mummies and in those first two years I made great friends at play groups, parks and libraries. Chatting about breastfeeding, when to introduce solids and naptime schedules helped me feel normal, yet in the back of my mind it felt as though we were walking different paths. I found myself longing for those parents back in that NICU parent waiting room. They understood me in a way these mother’s on the outside just couldn’t.
One night, a couple of years into my journey, my nightmares were keeping me awake and in desperation to feel just a little bit normal, I allowed myself to speak my fears. Though rather than speak them, I wrote them. All of the emotions that were hiding deep inside me, those feelings that made everyone else uncomfortable poured out of me in the form of a blog. In my mind all these terrible thoughts that had been weighing on me for the past two years were floating around in cyberspace with no eyes to read them.
I was wrong.
The messages from other NICU parents started coming in almost immediately. They thanked me for putting words to how they felt. I found online communities filled with parents who were struggling with their own experiences. I wasn’t alone. We were parents of NICU grads and we understood each other in a way that no other parent could. We swapped stories and looked for opinions. We cried, we vented and we complained that it wasn’t fair. We offered each other a support system and a light at the end of the dark tunnel we had been traveling.
I had found my tribe.
We aren’t all travelling the same road. Those closest to us, though they love us, may not be able to understand us in the way we need them to. Sometimes we have to look in the unexpected places for someone who can really hear our story. It took me two years but I finally found my people and I will always be grateful for them. They offered no judgement, they didn’t expect me to forget all we had been through; we were simply connected to each other.
I found my tribe when I least expected it but it was finding them that helped me through my darkest hour.
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