I remember Hayden was walking towards the car with a slight smile on his face, but something was off. About every 10 steps, he’d pause and look behind at the other kids exiting the school. Sometimes, the pause would be longer than the previous one, and he’d bend over or squat as if taking a break. Then he’d smile again and continue to walk towards me, until finally making it into the backseat of the car.
In contrast, Parker came bounding to the car, swiftly jumped in the front seat, and proceeded to tell every detail of his day, as he had since starting school. I usually listened intently because Parker had struggled at previous schools, and I wanted this one to work so badly. But that day, my mind was on Hayden, and I kept glancing in the review mirror to look at him. He looked pale; the white of his eyes almost blending in with his skin. Something was definitely NOT right.
Hayden’s Story
Hayden was born in the summer of 1999. He was not previously diagnosed with Down syndrome. Shortly after his birth, when he was struggling to maintain oxygen levels, a doctor walked into our room full of family and friends and announced that the baby might have “a touch” of Down syndrome. The room went silent, clearing out quickly. Hayden was transported to Cook Children’s hospital, where he stayed for five days. We heard very little from friends during this time. No one knew what to say.
Arriving home, we remained isolated. Our families came to visit, but it wasn’t the joyous celebration we’d imagined. I looked at all the stuff I’d bought for my new baby, including the book How to Teach Your Baby to Read, and wondered what the heck we were going to do. This was not what I’d planned. But as time went by and we fell into our new family norm, I realized that society’s idea of perfect didn’t match mine. Hayden was perfect. He was the most beautiful, sweetest baby I’d ever seen.
When I was about seven months along, I was coming out of the grocery store and saw a young couple, the dad with a toddler of about four years old on his shoulders. They were smiling and laughing, but it was obvious the child had Down syndrome, and I remember being so sad for them. How foolish I was, to look at this beautiful, happy family and feel sad for them! Looking back, I think the universe was trying to tell me it was going to be okay.
New, New Normal
The day after Hayden’s “off” walk to the car, the pediatrician examined him, did a strep test, and gave us a lab requisition for bloodwork. We received a call from the pediatrician about 8:00 that evening, calmly telling us that we needed to get Hayden to the emergency room ASAP. At Harris Hospital emergency room, the attending doctor told us it was likely Hayden had leukemia.
Two days later, we transferred to Cook Children’s hospital, and Hayden broke down crying at the registration desk, saying he didn’t want to die. I had no idea he knew how dangerous cancer was. We were admitted to the oncology/hematology floor where we would stay for the next 49 days.
Leukemia is a cancer of the blood or bone marrow. Children with Down syndrome have a significantly increased risk of leukemia, peaking first in the newborn period and again at three-to-six years; however, this increased risk extends into adulthood. Hayden received a formal diagnosis of acute myeloid leukemia (AML) on September 14, 2017 and started intensive chemotherapy two days later.
Hayden tackled chemo like he tackles life: with laughter, positivity, and a side of singing and dancing. He had a central line inserted in his chest, and endured chemo up to 10 days straight — three different meds, twice a day. He was hooked to an IV pole 24/7 during chemo, and within a few days, he gave pole dancing a whole new meaning! He had dance parties with the nurses at night, to the Spice Girls “Wannabe,” and sang at the top of his lungs during the day.
He required monthly lumbar punctures that delivered chemo to his brain, and bone marrow aspiration to check for leukemia cells. They used light anesthesia for the procedures, and he would hold my hands and drift off, singing to American Authors “Best Day of My Life.” I would silently cry, the irony not lost on me.
Capable of So Much
Although cancer was the first battle we faced, we were also informed by hospital staff that even though Hayden was 18 years old (and technically an adult), they didn’t feel he was capable of making decisions on his own. They requested we file for guardianship. In order to obtain guardianship in Texas, the court must say the adult is “incapacitated,” but we didn’t feel like Hayden was incapacitated. His understanding and cognition can be deceiving, as so many others with Down syndrome.
We hired an attorney to help us work on an agreeable solution with the hospital. One day, our oncologist came in and asked to talk about it. I explained all the ways Hayden had exceeded expectations of educators and others, and how guardianship would affect his rights as an adult. The oncologist exclaimed that he didn’t want to take away Hayden’s rights, agreeing to try a supported living agreement. He also made a point to include Hayden in the treatment from then on.
On our last day in the hospital, the oncologist stopped in. He made a comment about Hayden not being what he expected, and I could tell he was pleased with himself for looking past the Down syndrome and seeing Hayden for the individual he is.
Six months after being diagnosed with leukemia, Hayden finished chemo treatment, and is in remission. He is thankful to be home, and hopes to start back to school soon. Childhood cancer is extremely underfunded, with approximately only four percent of taxpayer-funded National Cancer Institute’s annual budget dedicated to childhood cancer, according to the website www.TheTruth365.com.
The Fort Worth Moms Blog hosts 20 Neighbor Groups via Facebook, including the Moms of Special Needs Tarrant County. These groups are free to join and offer online and offline opportunities to build relationships and gain resources from other moms in the area.
Crystal resides in Aledo with her husband and three amazing teen boys, two with special needs. She enjoys watching her sons play sports, exploring nature, reading books, and helping parents navigate the local world of special needs.
