A Million Dollar Smile

Riya was born on February 18, 2008. The events leading up to her birth were typical of any pregnancy. Mom and Dad were at first surprised, then ecstatic. Both sets of grandparents were supportive, celebrating all the “firsts.” Moments like seeing ten little fingers and ten toes on a monitor to finally hearing the words “It’s a Girl.”

Nine months go by fast, especially when all goes according to plan. Routine doctor visits were typical, and everyone was feeling good. All the boxes were checked:  Prenatal vitamins and baby birthing classes, baby’s room exploding in pink, blankies and binkies stocked, and even a unique name mom and dad could agree on. 

Then, in a moment, the world crashes down around you. I was pushing through all the pain and discomfort only to realize the fetal monitor showed that our baby was in distress. I was rushed into emergency surgery.

After the birth, I waited anxiously to see, hear, and touch her – only to feel empty and alone. The only sounds I heard were hurried footsteps and doors opening and closing. Then the news came. No reassurance from a nurse or the gentle hand of the doctor will ease the pain of those seemingly simple words “something’s wrong.”

Riya was born with the umbilical cord wrapped around her neck. This isn’t such an abnormal occurrence, but it proved most harmful in her situation. After surviving a stroke, Riya was quickly sent to a hospital specializing in neonatal care. 

The results of the endless tests and needle pokes were conclusive. Riya had irreversible brain damage. I watched our child breathing through tubes. There were hoses and IVs, and keeping vigil on monitors, praying the alarms didn’t go off. We knew our lives would never be the same. 

The early months were somewhat typical with Riya. There were diaper changes, feedings, and tender moments. Looming overhead, though, was the constant worry and anticipation. What were we to expect? There isn’t a chapter in the “What to Expect When You’re Expecting” book that covers what to do when your child may never grab hold of your hand, take their first step, or say, “I love you.”

A year went by, and Riya was noticeably behind in motor skills. When she was officially diagnosed with cerebral palsy, reading up on everything about the condition became a priority. Since there are so many variables and levels of intensity with her diagnosis, we let ourselves hope for the best possible outcomes. 

Riya began receiving physical and occupational therapy weekly. Her hands and feet were fit with braces to break up the high muscle tone in her extremities. A special chair and stander were carefully selected to help support her low muscle tone in her trunk and neck. Her medication was also checked regularly to assist in keeping her muscles relaxed.

With these efforts came roadblocks. There were days of driving to therapy only to be turned away because of insurance red tape. We waited months and months for the approval of the equipment necessary to help Riya. We were denied the treatment and tools that would support her development. 

For years Riya’s future was filled with uncertainty. Will she ever walk? Will she ever talk? There were days when I would see a toddler reach for his mother or a child walk alongside her father, and a twinge of jealousy or sadness would take hold. Most days, we noted any little advancements and tried to remain as optimistic as possible.  There were moments when we felt a glimmer of hope. 

Riya could use many therapeutic devices designed to help in her development. We found hope in positioning tools, a strap seating system, a specialty walker and bike, and an iPad talker. Her therapists noted how these tools made a significant difference in her development. All things that gave Riya support to help her to succeed in therapy. But the reality is that Riya will always struggle to accomplish even the simplest of tasks.  

Specialty equipment, surgeries, therapies, and necessary home renovations are costly. Thousands of dollars in essential tools to keep your child moving forward, learning, and advancing isn’t something that keeps most parents awake at night. 

When your child has needs, it’s easy to find a No.2 pencil, graphic calculator, and the latest Nike tennis shoes. But what if they don’t make shoes that fit your child’s feet? What if they can’t do simple addition by middle school or even hold onto a pencil? Therapy, widening doorways, building ramps, and purchasing an accessible vehicle are just a few things that come with having a child with disabilities. The financial stress that comes with this territory keeps us up at night.  

By age ten, Riya had already been through so much. There were countless surgeries and scars, botox injections deep into her muscles, medication changes, therapies, casts, and braces. And we’d only just begun. The most difficult surgery was on her spine. Scoliosis is a symptom of many individuals with cerebral palsy. The X-ray image of her spine is something we will never forget. Riya’s spine looked like something out of a science fiction movie – twisted and deformed. It was curved over 90 degrees. Her spinal surgery implanted two metal rods on each side of her spine, reaching from the base of her neck to the top of her pelvic bone. 

Riya remained strong through all this, and incredible personality traits emerged. She has always been brave, intelligent, and unbelievably independent. She’s quickly become a favorite in her classes and therapy sessions because of her positive attitude and willingness to try. Throughout her life, we have received help from multiple sources through donations and grants. Her first bike at two years old was gifted to us by the local philanthropy group. And recently, we were chosen to receive a scholarship from Family Hope Foundation to fund additional therapy sessions – such an integral part of her development.

We’ve seen the tremendous impact continuous therapy has had on Riya’s independence and self-confidence and the goals she’s been able to achieve. The scholarship we received has been a much-needed gift, lifting financial strain and worry. Being part of a supportive community has helped Riya’s development. She is reaching milestones we never thought possible. It’s hard to fully express our gratitude to the individuals and organizations who have come to our aid over the years. 

Riya’s legs are growing stronger, and she can stand with less assistance for extended periods. She can roll over on her right side without help. She can often push the buttons on her communication device to consistently create three to four-word sentences. Lifting a fork to her mouth finally became second nature after years of doctors thinking she would need a feeding tube. But the sobering truth is that Riya isn’t done growing and progressing; her needs will continue to change with her. 

Do we pray for a miracle? Everyday.   

Riya is fourteen years old now. She has orthopedic braces to prevent her feet from turning inward and pointing down and hand braces to help extend her left thumb. She began her therapy journey with 1 + 1 therapy where she grew stronger through intensive physical therapy. Currently, she receives daily therapy at the school and additional therapy twice weekly at Launch Pediatric Rehab and Mary Free Bed. Riya loves swimming, riding her bike, playing with slime, and eating ice cream. Her laughter is the most infectious thing I’ve ever experienced. To say she is the light of our lives is the biggest understatement one can make. Her sparkling personality shines through with just a smile. It radiates pure joy mixed with a little bit of that teenage sassiness – okay, a lot of sass. 

A person could look at her sitting in her wheelchair with bulky, hard plastic boots and wearing uncomfortable gloves and feel sorry for her. But as she looks up at you with her big chocolate brown eyes, crazy curly hair, and flashing that cheeky grin, you will wish you could be a part of her life for just one moment. You will want to say, “I have met the most amazing kid.”

-Written by Riya’s mom, Sarah Dahl