“The parent knows best and the parent knows first”
– David Grossman
It starts with the smallest symptom and within seconds, you’re consumed with adrenaline and beginning your mental-check list. I have become all too familiar with the fight or flight response, I am a special needs mom; this is my life.
When I started blogging, I never imagined I would share it; until today. As I’m going over my daughter’s medical binders for the millionth time this week, I’ve been reminded that we will never “get through” this time in our lives, because McKenzie’s diagnosis isn’t going to disappear. So, I’ve decided to throw it all out there.
Most of our family and friends follow our daughter’s awareness page, they see the updates, funny videos and cute photos. But, they don’t see the immense stress we live under, the on-going battle for answers and stability.
When McKenzie was born, her heart defect was the biggest concern and our most time-consuming fear as she went into heart failure within days of bringing her home. We were thrown into a life with medical equipment, medications, hospitalizations and on-going infections. However, when McKenzie’s heart surgery was successful at twelve weeks old, we were ready to focus on development and began planning for the years to come.
Unfortunately, the planning we intended to do was never accomplished – it was never even started. McKenzie was admitted a total of 8 times with several infections and illnesses. Today, McKenzie is 13 months old, and her medical conditions have become more complex with a total of 12 doctors, 3 therapist, a variety of procedures being discussed and a never-ending list of tests to complete.
It never seems to get easier. There’s an intensity to the emotions that come unexpectedly during a procedure, a test or simple appointment that cause stress levels similar to those struggling with PTSD. The truth is, having a child with special needs is completely isolating. However, we will continue to pray that the team of doctors caring for our daughter will find the solution to give her the stability she so desperately deserves.
“People think we are strong for managing everything in front of us. The truth is we are strong because we know there is no other choice, and we know that there is nothing else we would rather do for our child. Love is what guides us, and it is love that gives us superhero strength.”