I’ll never forget it. My heart rose into my throat, as I read the words. The woman sending me the message had found me via Instagram, and I couldn’t fight the tears as I read what she wrote to me. She and her husband had just delivered their newborn son, a few weeks early. The doctors whisked him away to the NICU, and then informed them that their beautiful new baby had a brain condition called hydrocephalus… and that he would need to have brain surgery immediately, to place a shunt. In shock and absolutely devastated, they did what almost any one of us would do… they turned to the internet and Googled the word “hydrocephalus”. The things they found were terrifying - as they learned that their son could have many challenges ahead, and that they were embarking the crazy roller coaster of shunt life. But then, they stumbled upon my Instagram page— and found hope. They found that even though I have many difficulties with my shunt, and by no means do I have an easy path, I have a beautiful life, and I have hope. And in this incredibly vulnerable and awful moment, this mom found me. And it changed my path forever.
Another Instagram message from early in my blogging journey, was from the mom of a little girl about 5 years old. She was in the hospital for a shunt placement surgery, and had to have her long blonde hair partially shaved for the operation. Her mom was able to pull up my Instagram account on her phone, and show her daughter all the silly photos that I’ve posted of the various phases of my brain surgery hair — shaved, staples in the side of my head, hair sticking straight out as it grows back, and everything in between. In the message, this mom told me that she was comforted by the fact that she could show her daughter what was going to happen, and that her little girl had the reassurance that it would be ok. Reading this message, I knew I was doing the right thing.
These two stories are examples of so many amazing conversations that I have had with moms from all over the world- not just moms of little hydro super heroes, but also moms who themselves are battling hydrocephalus… working to balance the difficulties of daily life with a neurological condition with the hard work it takes to be a mother. I’m humbled and honored to be trusted with the stories of these beautiful women, as they navigate through the waters of life.
My own mother is a truly incredible example of the relentless pursuit of life and love. I’m the second oldest of seven children in our family. Four of five daughters have significant physical or mental conditions. My mom has spent more time in hospital waiting rooms, doctor’s offices, and therapy clinics than a parent should ever have to. As her children suffer, she suffers alongside us. In some ways, I know that the emotional pain she feels when we are struggling is greater than the pain we are experiencing physically. But she has never complained, and never gives up. Her love never waivers. And her ability to stay steady and moving forward, as the storms of life rage around her, is a trait that I aspire to carry on.
This past week, I had the honor of traveling to Tempe, AZ with my youngest sister, Carmel, to attend her graduation from Arizona State University. Howard Schultz, CEO and Chairman of Starbucks, spoke at the commencement. As he was speaking about humanity, and the social responsibility of each of us has to connect with others, he introduced the crowd to the South African word ubuntu. This word means “I am because of you,” a beautiful sentiment that supports and honors so many aspects of human connection, but especially motherhood. I am because of you. The love of a mother is the first true relationship we all experience. It shapes the way we interact with the world, and in the case of us hydrocephalus patients, equips us with the pure strength and endurance it takes to run this race. Even though I am not a mother, my mom’s example of faithfulness and love has made me who I am. I realize every day that I have an opportunity to positively influence and support others, and I do my best to be a good daughter, sister, and mentor. I press forward and stay steady in my fight, knowing that I have been given this path to walk— because I have a purpose.
I love you, Mom.
I am because of you.
5/14/2017 02:17:18 pm
Just wanted to say, what a wonderful piece. I am also grateful to see what you have done with your hair. My daughter has beautiful hair. I know it's just hair but I often think "how dare Hydrocephalus touch a hair on her head." Obviously there are such greater worries but...sometimes it feels like it is more than just hair. Your posts definitely help.
10/25/2017 05:56:51 am
5/14/2017 03:46:45 pm
5/21/2017 11:25:50 am
thank you Lupita.
5/21/2017 11:26:33 am
thank you Holly.
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My name is Amy but friends and family call me Am. I am a lover of dogs, good whiskey, and strength training. I'm a brain surgery survivor (x31), a fiddle player, a construction designer, and a boxing enthusiast. I have six real siblings, and five fake brothers. I love deeply, and consider my close friends to be family.