The call came on the Friday before Labor Day. After years of hoping, praying and waiting ... and waiting ... our adoption caseworker called. “There’s a baby who is 2 months old. He’s in a town outside Montrose, Colorado. We are wondering if you would like to see his file.” A boy! My first baby is a boy!
Getting that call changed the lives of my husband, Rick, and myself. Instant parenthood can be overwhelming. Suddenly we were parents! A frantic weekend of getting a crib, car seat, and “coming home” clothes—and lots of laughing and crying—ended with a long drive over the mountains to see our son for the first time.
The next morning could not come quickly enough. We met with his caseworker, then headed to his foster home. Wow, this was real. The baby was beautiful. We told him his name was Ryan. Since he smiled on hearing that news, we decided he approved. So, with a small list of instructions from his foster mom in hand, we placed him in his new car seat, and started on our journey as a new family.
We had barely taken a breath after arriving back home when I started worrying about Ryan. He was hard to dress because his arms and legs were stiff. He also had some difficulty drinking from a bottle and holding his head up. Visits to the pediatrician always ended with reassurance that Ryan was fine. I noticed friends asking gentle questions about his development, but I just repeated that our pediatrician thought he was fine. I dismissed others’ concerns because I just couldn’t go down that path of “what if?”
The day of Ryan’s 6-month checkup, I was handed a milestone checklist. I went through the list. Ryan wasn’t holding up his head, he couldn’t bring items up to his mouth, he had difficulty with eye tracking, he couldn’t really reach for toys, and wasn’t rolling over or trying to crawl. I handed the almost blank chart back to the pediatrician. Ryan and I sat in the examination room alone for quite a while waiting for the doctor to return. I was so scared. I knew the doctor was getting ready to change our lives forever and dreaded what I was about to hear.
The pediatrician eventually came back into the room. Then he left, came back in, then left again. All without saying a word. After the third time, I asked him what was wrong with my baby. With his hand on the doorknob, he turned to me and said, “I think he has cerebral palsy,” then left again.
He finally came back in with information about Denver Children’s Hospital and a phone number to call for diagnostic appointments. I was reeling from the news. I felt hopeless, helpless, and paralyzed.
I didn’t know where to turn. We had so many questions and very few answers. We were beginning a journey with an unknown destination, delving into a world of disabilities, advocacy and parenting Ryan. We needed guidance to begin learning about our new world and we were determined to find the help we needed.
I went home to tell my husband the news.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.