As the world-class medical staff at Riley Hospital for Children worked to save our daughter Abigail, the encouraging words from a cleaning lady at the hospital prepared our ailing spirit into a healthy attitude that guided us on our amazing journey. She simply said, “Now, don’t you dare let me see that tear boiling in your eyes roll down your face. You are in good hands; you just need to smile and believe.” From that divine moment, “smile & believe” became our family’s motto. Smile & Believe has also become the name of Abigail's fundraiser albums for Riley Hospital for Children. She is a 9-year old with a huge heart. Her wish is for this to be the best Christmas ever for all of the Riley Kids. The title track of the album, Smile & Believe, tells the story of Abigail's journey to overcome her health challenges in her own words. Below is Abigail's Riley story.
Our amazing journey all started when our beautiful daughter, Abigail, was only a few days old. It was a day we will never forget or regret. We were exhausted from many sleepless nights with our newborn and were just sitting down for dinner. The phone rang and it was our pediatrician. We thought it was so nice of him to personally give us a call telling us to stop feeding our baby breast milk and only feed her soy formula. We didn’t even know what was wrong with our baby as we hung up the phone and headed to the hospital for blood tests. We found out a couple weeks later that Abigail had a defective enzyme that broke down the sugar in milk. Her condition is called galatosemia. She had some of the enzyme but still needed to be followed by the staff at Riley and be on a restricted diet.
We thought our Riley trips were going to be minimal in and out patient visits. To our surprise, our baby girl was very sick. As new parents, we didn’t know something was wrong. As time went on, that gut feeling that parents gets when something wasn’t right, was becoming all too familiar. We videotaped Abigail sleeping over several nights. She flipped and shook almost like she was having a seizure. Our pediatrician sent us immediately to Riley for a sleep study.
The first time we walked into Riley Hospital for Children, we were numb. Martha was a special education teacher and had spent years going to Riley to visit her students. She never thought her role as a parent would place her on the other side. Riley didn’t even look the same as a mom as it did a visiting teacher. Our heavy hearts were quickly filled with hope when a woman cleaning windows in the hospital looked at us and simply said, “Now, don’t you dare let me see that tear boiling in your eyes roll down your face. You are in good hands; you just need to smile and believe.” From that divine moment, “smile and believe” became our family’s motto.
The sleep study test showed Abigail stopped breathing over 100 times through the night. Our daughter’s future was now in the hands of an incredible pulmonary specialist. As we struggled emotionally to make imminent decisions, we reminded ourselves to “smile and believe.” Abigail started to get fussy during the appointment, so mom gave her a bottle. When Abigail stopped drinking in order to cough, the doctor asked if that was normal. Naturally, as first time parents, the world “normal” was pretty foreign. She sent us to another department for more tests.
What started as at 9:00am appointment ended at 9:00pm. That’s when we were told that our 6-month old baby needed emergency mal-rotation surgery. We can recall an intern and surgeon standing before us, but never hearing the words. We could tell by their faces that our baby was extremely sick.
At surgery time, we kissed the face of our little princess and handed her to a nurse. Abigail never broke eye contact with us. We just looked at her blue eyes and told the nurse to take care of our baby because she was all we had. The blue-eyed nurse smiled and promised she wouldn’t leave Abigail’s side. That nurse kept her promise. We met her again after many painstaking hours in the recovery room. She was even with us on the elevator ride to get Abigail to her hospital room.
During that elevator ride, we also remember telling Abigail we were so proud of her for doing so well and that we were going to Disney World as soon as she got out of the hospital. An older couple was also in the elevator, too. They looked at us like we had lost our minds as we kept saying how good she looked. We never saw the monitors, tubes, IVs, and other devices keeping our little girl stable. All we could do was “smile and believe.”
After a couple of long weeks, we were able to take Abigail home and back to a normal life. Oops, we don’t know normal! Through the next year, we found ourselves walking back through the doors of Riley a couple times for in and outpatient surgeries for her little teeth that decided not to come in with enamel.
Nothing major happened until 2008. Abigail was thriving and starting kindergarten. We thought our Riley visits were only to drop off our traditional Christmas gifts for the patients. Abigail was getting sick a lot and nothing was working. She would get intravenous fluids about every two weeks for dehydration due to vomiting. Alarmingly, she lost 20% of her small 5-year-old frame. She was fading fast as our pediatrician sent us again to our friends at Riley for help.
After a week stay, we had yet another diagnosis by a wonderful gastrointestinal doctor and a plan to keep our little girl healthy. Abigail has Cyclic Vomiting Syndrome. CVS is a disease that causes "migraines" of the stomach. She takes daily medication which keeps this disease under control.
We have truly visited almost every department at Riley and are continually amazed by the love we feel. Whether greeted by a custodian that tells you the most powerful words you will ever hear; trustingly handing your baby to the caring blue-eyed nurse; or, stopping by to donate Christmas presents to children that can’t be home for the holidays, you are forever family after entering the doors of Riley Hospital for Children.
No matter the path that we must travel, we will always smile and believe.