[title text=”Guest blog by J.O.”]
It has been said what doesn’t kill you makes you stronger, God never gives you more than you can handle, and lessons are learned from life’s trials, tribulations, and tragedies. I don’t know of any of this is true, but our journey has indeed taught me many things.
I am the proud mother of three beautiful children; two healthy, one not. My youngest was born multiply disabled and is now medically frail. I am her full-time caregiver, personal care aide, night nurse, respiratory technician, physician, advocate, teacher and friend.
This is the life that has been chosen for me.
I have grown to dislike comments like “God only gives special children to special parents”. Though meant to be a compliment, it makes me question why wonderful, loving parents would be “chosen” to watch their children suffer. I still pray, and yet I question my faith.
Love comes in many forms. It can come as a home-cooked meal on a particularly bad day, a personal message of support left on your answering machine, or a visit from a friend when the last thing you want is a visit from anyone. The most unlikely of people may lift you up on the dark days, when those we expect the most from may disappoint us. Sometimes friends and family will leave… without explanation. I have learned the word “acceptance.”
There are things we cannot change, and they will consume us if we let them.
Doctors don’t always have the answers, and they can make mistakes. It’s okay to question, challenge and not accept that which we feel is not right. Advocating for our loved ones is one of the most important things we can do. Listen to your instincts. The most revered doctors seem to be the ones easiest to contact and the most compassionate. They admit what they don’t know and truly want to help. They are my heroes, next in line to my daughter.
Parents and caregivers of disabled children are like silent warriors, working tirelessly for the rights of their children, fighting for supports and services, putting their own needs and health last. We care for our ill children daily with eagerness and smiles, when our own bodies feel like breaking down. We hold back our tears until we are alone, so we don’t upset anyone. And we lie awake each night worrying who will take care of our precious children when we are no longer here.
Somehow we keep going, fueled by the incredible love we have, letting go of the guilt when that we cannot make them better.
The most important lessons I have learned come from my daughter herself.
Strength comes in many shapes, sizes and forms, even in a frail and tiny body. Her courage and spirit have shown me the power of a positive outlook, no matter what challenges life hands you. We face each day with laughter, joy and encouragement, knowing everyday is truly another gift for us to enjoy together.