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.
Dear Friends & Family, Supporters and fellow Hydro Warriors,
Growing up, I was raised by two loving, supportive, and incredibly resilient human beings, who taught me from a young age that success in life is not defined by what happens to you, but how you choose to respond to what happens. My parents gave me the skills I needed to fight my own battles, stand up for myself, and never give up. They are living proof that God gives you only what you can handle, and that love always wins. For this, I am eternally grateful.
In the past 8 months, several life-altering changes have tested my resolve, crushed my heart, and forced me to take a good hard look at who I am. Nearly every aspect of my personal life has shifted, and a new chapter has begun. Each difficult experience or loss ripped a layer off the surface of my personality, exposing strengths and gifts, struggles and weaknesses. Wall after wall that I had built to guard my heart have tumbled down, leaving nothing but my true self, exposed to the world, but protected by the grace of God. And through all of this pain and vulnerability, I have found the most incredible peace. Staying present and in control my thinking, I am healing, and finding that I am never alone. Nothing about this process has been easy, but I am committed to accepting this as an opportunity to grow as a person.
I first read this poem by Rudyard Kipling in English literature class in high school, but I had forgotten about it until a close friend sent it to me recently. It truly defines the relentless pursuit of life and love. As I read it for the first time in years, tears were streaming down my face. It was one of many moments in the past several months, where I felt a very real and tangible challenge to find the bravery to continue, reminding me and reaffirming the notion that love always wins.
If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don't deal in lies,
Or being hated, don't give way to hating,
And yet don't look too good, nor talk too wise:
If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build 'em up with worn-out tools:
If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: 'Hold on!'
If you can talk with crowds and keep your virtue,
' Or walk with Kings - nor lose the common touch,
if neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run,
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man, my son!
Moving forward, I am recommitting myself to the goals that I initially had for this website - to support the hydrocephalus community by providing details of my journey, as well as my real life experiences. I remain dedicated to this advocacy work, because I believe that God gave me a strong voice and the ability to connect with people as a purpose for my pain. My name has changed to Amy Thomas, and the name of this website has changed to www.stayinthearena.com - paying homage to the Theodore Roosevelt “Man in the Arena” speech that I often reference in my blogging.
Thank you to each and every one of you who have supported me, inspired me, and keep me pushing forward in growth. Thank you for understanding and respecting my need to spend the past several months outside of the spotlight, fighting these battles quietly. I’ve been intensely focused on my physical, emotional, and mental health, and I am doing well. Life is amazing - so painful and beautiful all at the same time. In the end, we get to choose how we respond to the challenge - and love is well worth the battle. Never ever give up the relentless pursuit of everything that’s important.
Stay in the arena. It’s where the magic happens.
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 (x25), 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.