When I was a little girl I had many dreams, and although the scope of those dreams were ever changing, the base always remained the same. A happy life, a healthy family, loving husband, and children to carry on our family name. December 14, 2011 my journey in life took a drastic turn. My 18 month oldlittle boy had been demonstrating small struggles, his gait was off, shaking when he woke in the morning, and being a new mother, all of those signs flew past my radar as dangerous, they were simple things that toddlers do. But a visit to his pediatrician, an emergency CT Scan, ambulance ride to the medical center, and a ten night stay at Texas Children’s Hospital’s ICU Unit changed that concept in an instant, with six little words…”Your child has a brain tumor.” They are words no mother ever expects to hear, it happens to other people, not you. My faith in God began to fall, why him, why us, why me, why a child? And despite my constant prayers and questions, no answers came, only little miracles God would send to let me know that it would all be ok, because it was his will, not mine.
His official diagnosis is a Pineal Pilocytic Astrocytoma, a very common brain tumor in a very rare location. Only 2 reported cases of his type are reported each year. Surgery was risky, radiation was damaging, so we drained the fluid off of his brain and waited, a year. One year of watching this monster grow in his brain and finally the medical team decided to begin chemotherapy. A port was placed, treatments began, hair fell out, tears flowed down faces, and the chemo did nothing. The next step was a brain resection, they went in and removed 95% of it. 3 months later, it had doubled in size again. Proton radiation at MD Anderson seemed to be our last hope, and that is where our lives began to turn around. It worked, the tumor began to shrink, and stabilize. It is still there in his brain today, in the back of my mind before every brain scan, as we watch and wait to see what this invader is doing. In March 2020 we were supposed to be moved to the long termsurvivor clinic, but they spotted a small abnormality on his scan, so again, we wait, we watch, and we pray. And the prayers were answered, In October 2020, after 9 LONG years, we were given clearance to join the Survivor Clinic. I know God has big things for this little boy. He met every visit to the hospital with a smile, a life in the hospital was all he knew. If you could meet him you would understand, he has wisdom, compassion, love, to simply put it, he has an old soul.
In the past 9 years our little boy has endured 2 Brain Surgeries, 18 months of Chemotherapy, 6 Weeks of Proton Radiation, and 100’s of blood draws, MRI’s, CT Scans, Physical Therapy, Occupational Therapy, Speech Therapy, ABA Therapy. He had to learn to talk again, to walk again, to be a little boy again. Each moment broke my heart, would my child ever be normal? I was mentally, physically, and financially exhausted. And the answer was no, this WAS our new normal. So, I embraced it, the only way I knew how, to give back.
One of the gifts that Bennett received during his very first hospital visit was a Build-a-Bear. It was the first time in days that I was able to see him smile. I wanted every parent to experience that moment. It filled me with hope, it was one of those little miracles I needed to see, that EVERY parent deserves to see when their little one is in that hospital bed. I told my husband that if we were blessed enough to leave that hospital room with our little boy, we would do something to give back. We left with our little boy the day before Christmas 2011, and on that day Bennett’s Bears was born. Since that day, with the help of generous donors, we have been able to donate over 14,500 Build-a-Bears to pediatric cancer patients and children with other illnesses throughout the State of Texas.
I ask myself today, how did my son’s cancer alter my relationship with God? In truth, it never altered, it may have trembled, I may have lost contact for a while as my anger consumed me, but the love I had for God never changed. Too many times I had to explain to my little boy why his friend with cancer was dying, but he was still alive. I had to explain to him that God chose for him to live, to be here to make our world a better place, to make me a better Mommy, to instill hope in those still fighting. I became angry at God for a very long time, but I always knew that when my tears had dried, and the anger had fallen away, he would be there to hold my hand and lead me from the ashes I had buried myself in. God was my salvation, God IS my salvation, and God WILL be my salvation each and every day.
If you can take one message away from what I have said to you today, let it be this: Be the Change, be the voice, be alive, embrace all God offers you, the bad and the good, because one day my little friends, it may be you telling a story similar to mine, and I want you to be as prepared as you can be.
Each time Bennett gets into an elevator he knows everyone’s name, age, and favorite color before it’s time to disembark. I think we all should live our lives like that. 🤍
Thank you and God Bless.