When Shelby was just 10 days old — still too young to come home from the hospital — doctors discovered a small hole in the upper chambers of her heart and diagnosed her with congenital heart disease. Within a year, she underwent an ASD/Partial VSD repair to correct the problem. Little did we know at the time that it was only the first of many health challenges that Shelby and our family would face. I had always thought, “this could never happen to us,” but since that time, our lives have changed completely.
As Shelby got older, I could tell that she was not developing like other children, yet the doctors kept assuring me that she was only a ‘little behind” because of her heart condition. Then, at three-and-a-half, she began to have severe seizures, and was diagnosed with epilepsy. Convinced that something was seriously wrong, I took Shelby to Scottish Rite Hospital in Dallas, where doctors diagnosed her with cerebral palsy. The doctor at Scottish Rite showed me the different areas that were damaged in my daughter’s brain, and then sent us to Dallas Children’s Hospital for additional tests -- genetic testing this time. There, we learned that Shelby had Chromosome 8 abnormalities.
As she grew older, more health problems emerged. At 10, she was diagnosed with Super Ventricular Tachycardia (SVT). At 14, we found out that Shelby’s SVT had developed into Ventricular Tachycardia, and after she went into cardiac arrest twice, doctors implanted a pacemaker/defibrillator. Then, at 15, Shelby was diagnosed with Type II Diabetes.
No matter her health problems, we have always made sure that Shelby is treated no differently than other children. She has been enrolled in dance and cheerleading and enjoys sporting events, movies and recreation just like the rest of us. The fact that she is 15 with the cognitive level of a three-year-old sometimes limits what we can do as a family, but we try not to let that stop us.
I have other children both older and younger than Shelby. They are so different from one another, and each of them has been affected in his or her own way by having a seriously ill sister. My youngest daughter Katelynn, who was only 1 when Shelby started having seizures, has probably been impacted the most by her sister’s illness. But even as a toddler, Katelynn showed signs of wanting to help take care of Shelby. Even though she is younger, Shelby refers to Katelynn as her big sister because she looks up to her with so much love and respect.
Socially, Shelby’s condition hasn’t really affected us, but emotionally, it’s hard to know that any day can be her last. No doctor has been able to give us a timeline of how long we have with Shelby because of the unique combination of all of her different problems. We enjoy everyday that we all have together, and I hope that everyday when I wake up, she is still alive and breathing. Despite this, I can’t imagine my life any other way. I know there are other people out there dealing with even more issues than we do.
One day, I received a letter in the mail inviting Shelby and my family to join Starlight. Thanks to its Great Escapes program, we have been able to enjoy hockey games, musicals, and even special dinners as a family. It is so fantastic to get invitations to Great Escape events — it means there’s a fun time in store for us away from all of the medical worries! My whole family looks forward to these outings, and I enjoy that each adds a little bit of culture to my children’s lives. Starlight has helped us make so many special memories together. Also, because I am a single parent and a full-time student, these are activities that, on a normal basis, we would not be able to enjoy at all.
I think I look forward to these outings as much as the children do! There is nothing quite like seeing your children smile.