Life is often bits and pieces of life events that lead to something bigger. This time of year always reminds me of the pieces that have lead me to where I am and the evolution of the person I am today. I am going to share a little piece with you today…
Nearly all parents will say that their life began when they realized that they were going to be parents. That moment for me was an absolute awaking to the reality that my life was no longer just my own, but was to be intertwined with another. There was a creation in that moment of an unspoken oath that one was to take this small human to love, protect and guide through this tumultuous world. I let go of my personal freedoms to be that person for my daughter. There are no words to describe what a joy she has been since birth and the world has been a better place with the positive energy she continues to put forth.
One day, her energy shifted. It shifted in a direction that was opposite of what a 4 years-old energy trajectory should have been. She became sad, sick and withdrawn, complained of headaches often, and was losing her shine. This was just not normal. There were multiple visits to her pediatrician’s office in our small town, the provider felt that she had a psych issue, she was acting out, and there was nothing medically wrong with her. Those visits started around her birthday in November 2009, until one visit on March 15, 2010, that I demanded that she actually needed to LOOK at my daughter. A CT scan was quickly ordered and performed, immediately read and we returned back to the hospital ER rather than clinic to be told the results. Her provider couldn’t speak to me, she just handed me the results. The fear and pain those 2 papers held were enormous. The next moments and minutes were crucial, we were placed on the 1st medical flight out to a larger facility and swept into emergency, life-saving surgery.
I often recollect on the events that lead us to that moment. The sadness, the fear, the unknown and the unwavering trust in our medical professionals. All the hands, eyes and brains that missed what was right in front of them, in regards to my daughter and her medical status. The lack of self-advocacy and complacence on my part when I didn’t challenge the provider, thinking they knew best. However, we can’t go back, but we can move forward. We KNOW our children and since that day, I have become a strong advocate for my daughter, her health and her education.
My daughter, Kayla, is a miracle and continues to be a miracle. She had not one, but two back-to-back emergency surgeries that day to relieve the pressure in her head. She had developed severe hydrocephalus, from a slow-growing brain tumor, called a craniopharyngioma, a benign pituitary stalk tumor. A few days later when she was stabilized and her brain pressures were normalized, she had another surgery to reduce the size of her tumor. We were in the hospital for two weeks in the pediatric ICU, then eventually the pediatric specialty care unit, during that time, we were surround by the most compassionate medical providers and support staff. One moment that stands out the most was when her oncologist, pulled me aside, and gave me the most sage advice. He said, “let go of your current idea of normal, you will have a new normal. Embrace it.”
This piece of our life happened 8 years ago. There are many of the pieces of this story that have not been told, and may come out later, because they are powerful in the right light. The whole of this experience was that Kayla is a powerful human with a warrior’s soul. She has taken on all her challenges with ultimate bravery and compassion.
This blog and this life adventure that we have been on is dedicated to her. My only hope in my life is that she dreams big, remains kind and seeks adventure, so she can piece together the life she deserves.