Life experiences can be serve as our biggest teachers. Before the birth of my first son, I feel as if I was living with my eyes closed. Not once did I ever really give thought to those around me that were living life with disabilities and illness, let alone those who provided and assisted them with care.
I remember sitting in waiting room on one of my last visits to the OBGYN. The waiting room was shared with those waiting to be seen in pediatric medicine. I noticed a caregiver and a child with special needs. She was reclined in a wheelchair, covered in blankets exposing only her shoulders and face and her tracheotomy. In that moment, I thought to myself. Thank goodness that will never you be you. I was deeply thankful I was having a healthy baby boy. I counted my blessings a thousand times over.
Life can be ironic in that way. Less than two weeks later my son Noah was born. After a very traumatic birth.
He was born without a heartbeat and did not breathe for the first thirteen minutes of life. As a result he suffered global brain damage from perinatal asphyxia. A diagnosis of spastic quadriplegia cerebral palsy followed by his second birthday. And today at age 5 1/2 he cannot walk, talk, crawl, sit, or self-feed.
My worst fear came to life. And, in turn, often times when people look at me I am now a reflection of their worst fear.
I am now that caregiver in a waiting room, having other people think that what they are seeing will never happen to them. Our lives often appear tremendously tragic to people who have never experienced what is involved with caring for someone with a disability or illness. We become that poor mom with the disabled child.
And as hard as a day in our life can be, it comes with so many beautiful lessons that I wouldn’t have otherwise learned:
- Gratitude. It has taught me to be thankful for small things. Each breath we take feels like a miracle. I cherish time and have a deep appreciation and understanding for how fragile we all are. I’m grateful for tiny victories and achievements. I have the ability to respect the hard days, and relish in the good ones.
- Never underestimate the value of positive thinking. It took me a little while to learn this lesson. I was so absorbed in the tragedy that I thought I was experiencing. A baby with a severe neurological brain injury – woe, is me. I failed to recognize early on that my emotions and feelings were not in any way benefiting my son. He needed me to be positive, brave and full of courage. He could easily feel my emotions, my sadness reflected upon him. Making both of our days gloomy. Once I started living positively and believing in all things possible, I watched my son, Noah, grow happier and happier in his physically challenged body.
- Compassion makes you a better person. After becoming a caregiver I have acquired a profound love for others. I want to be there in times of need, in times of hardship. Even when I cannot change the circumstances, I realize that I can at all times listen and offer comfort to those around me. Noah has taught me the what the real meaning of unconditional love means.
- Caregiving is rewarding. It’s not the easiest thing in the world to do, but I’ve learned it is one of the best things in life you can do is to help someone who is completely dependent upon you for care. You are needed in the most important way. You are someone’s life-line. What an incredible honor.
Caregiving isn’t what many of us pictured for ourselves but what we take away from it, can’t be found in text books.
It can’t be found by someone telling you about it. You can only fully understand and gain all these important lessons if you are in that role. We have the ability to make a difference in the quality of life and well being of another human being. Your caregiving has purpose and beautiful lessons within that purpose… lessons I’m so glad I learned.
Stacy Warden is a in-home parent CNA, who worked in the legal profession in District Court prior to the birth of her first son Noah, who suffered a birth injury resulting in global brain damage. She has two young sons, Noah and Luke. Noah has severe spastic quadriplegia cerebral palsy with athetoid movements. Noah loves cheesecake, airplanes and cartoon t-shirts. Luke admires his older brother and is always eager to assist him so they can play together. Stacy’s passion since Noah’s birth has shifted towards advocating for those with special needs and offering encouragement and inspiration for life’s often unexpected journey. She constantly craves coffee and enjoys quiet walks with her boys, while finding pleasure with the simple things in life. When she’s not hunting a Starbucks drive-thru, she is flipping through Irish and English recipe books in search of the next best dish.
You can find her at Noah’s Miracle.
What a beautiful story .. As a caregiver for over 20 years , I agree with everything you so wonderfully explained ..
God Bless you and All the caregivers
They are very special children. I have a 31yo son with spastic quadriplegia CP due to a brain hemorrhage after trying to remove a tumor that was caused by his dad’s genes and mine not being compatible at 3 weeks of age. I was told he’d be a vegetable but he’s far from it. He went on to feed himself, has approximately a 300 word vocabulary and gets his point across real well. Recently he began assisted typing and through that – it could very well have saved his life.