All the time, we hear people use a Roller Coaster as a metaphor.
"Will I ever get off this roller coaster?"
"My life is such a roller coaster."
"I'm a roller coaster of emotions."
And we're just expected to nod our heads and understand what they mean by this metaphor. They don't explain. They don't go further. It's just a roller coaster.
Friends, this HLHS battle is a roller coaster. A big, scary roller coaster.
We waited in line for what seemed like forever. Finding out at 24 weeks that our child would be born with HLHS was not easy. That left us 15 weeks of anticipation. 15 weeks to ask the "what ifs" and the "why mes". 15 weeks to wonder and 15 weeks of knowing there was nothing we could do about our situation except prepare ourselves to face it.
After waiting impatiently in line... anxious with anticipation, we finally made it. It was our turn. I don't know about you, but when I get settled into my seat on a roller coaster, I go from excited anticipation to fear! What if we go off the rails? What if my seat belt malfunctions? What if I blow chunks all over the people behind me? On the day of our induction, I had a million thoughts running through my mind. Not particularly good ones. I was fearful. I was scared of experiencing labor for the first time. I was scared I would not get to see my baby before they took her to the NICU. I was scared that her fragile body wouldn't endure the stress of labor. Suddenly, I wasn't so ready for this ride to start. I wanted to turn back, but knowing I couldn't, I fastened my seatbelt, said a little prayer and waited for the wild ride to start.
And so began the ups and downs, the twists and turns, the changes in speed. Sometimes it felt like things were happening too fast, while other times dragged by so slowly. In the morning we'd celebrate great milestones, only to cry over setbacks later that evening. And occasionally we'd round a sharp corner to an unexpected surprise. Making it through surgery is not the hardest part of the HLHS journey. It's everything that comes after. It's the constant adjustment of the countless medications that keep her heart, lungs, and tiny little body operating as it should (under the circumstances). It's going on the vent, off the vent, on the vent, off the vent, onto vapotherm, off the vapotherm, room air to 50% oxygen, 38 breaths a minute to 14, she's too tachypneic, she's not breathing enough. It's the frustration of knowing why my daughter is crying and wanting so badly to help her, but having to wait for a nurse to do it. It's forcing myself to wake up on time for rounds so I can hear all the doctors spout out all the numbers that I don't understand but refuse to miss. This journey is HARD and, like a roller coaster, you're not sure what's coming until you're headed up the hill, flying down it, or winding a sharp turn.
But as the roller coaster comes to an end, and you have a minute to catch your breath, you smile. When I look over at my sweet girl, swinging away in her mamaroo, snoozing just as cozy as can be, with no oxygen in her nose, and no feeding tube down her throat, I smile. We have seen highs and lows. We have survived twists and turns. We may be a little worse for the wear, sore backs, wind-blown hair, a little dizzy, but that roller coaster was so worth it! The fear, the anticipation, the constant unknown, it is ALL worth it! I'm not hurrying to get back in line for this one, but I'm sure glad I took the ride.
I know that our journey is not over. We will board many other roller coasters over the next days, months, and years. We will see many hills and turns in our lifetime. And they will all be worth it. My daughter is absolutely perfect. I would not change one single thing about her or our journey. Not one single thing.