Session 4
With the success of our football game outing, we felt a little more confident about an upcoming excursion. Just before Mayah’s first birthday, we were set to travel to a Children’s Hospital in eastern Ohio, which had a skeletal dysplasia clinic. The trip would include about seven hours of travel time and include an overnight stay at the Ronald McDonald house, (since our appointments were first thing in the morning). This would be Mayah’s first night away from home that wasn’t spent in a hospital bed.
Seeing as we wouldn’t have access to hospital medical equipment, that meant we would have to bring our “home hospital” contents along for the journey. In addition to our typical travel entourage, we were also bringing Mayah’s home ventilator setup, which included a humidification system. We also brought extras of everything (like the suction canister and ventilator hoses), just in case something were to break during travel.
Thank the good Lord that our Mayah traveled well, with no need to stop to give her a break from the car seat and no vomiting. Seriously, our trip could not have gone smoother! The clinic appointments were a success as well. In addition to the orthopedic doctors, we also met with a leading geneticist that serves on the LPA (Little People of America) medical advisory board. We left the appointment with an official diagnosis for our daughter. After a year of uncertainty and little direction, we now had a “label” for Mayah’s condition.
I wasn’t too fond of giving our daughter a medical label. I hid behind the guise of religious conviction, stating that the diagnosis meant nothing to me because it was just a name, and no name was greater than that of our Lord, Jesus Christ, who has overcome the world. (Phil 2:9, John 16:33). In reality, I was terrified that the diagnosis made Mayah’s condition permanent. I had just spent the last year of my life praying our situation away by declaring healing Scripture over her. It was fear that kept me from sharing Mayah’s diagnosis: Acampomelic Dysplasia. I remained in that place of fear for many years. Mayah’s condition was indeed considered fatal, as the sonographer had predicted when I was just 17 weeks pregnant. According to science, the chance of survival is less than ten percent—over ninety percent die in infancy. (With modern medical advancements, I believe the survival rate has increased, but no studies have updated the information.)
Our Mayah is truly a miracle. A lot of information was thrown our way at the skeletal dysplasia clinic, most of it pretty scary. But we also walked away from the appointment with hope. The geneticist was the first doctor to give us hope that Mayah could survive, and that there were others with her diagnosis that are living a fulfilling life.
“. . . and hope does not disappoint, because the love of God has been poured out into our hearts through the holy Spirit that has been given to us.” (Rom 5:5).
With this newfound hope, we set our sights homeward, where we would continue to witness the life of our miraculous daughter, with the hope of many more travels with our trachie.
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