She weighed in at 5 pounds, 6 ounces. Kylie was a beautiful baby girl and perfect in every way. In just a few short days after we took her home, a phone call rang in from the hospital that would change our lives forever.
A routine newborn screening would reveal that Kylie had a metabolic disorder called Pheynlketonuria or “PKU”. This tiny piece of information ensued a parental emotional roller coaster ride with mountains to climb that had no end in site.
At first, we were literally inundated with information. We would need to meet with specialists from out of state, nutritionists, rare drug representatives, child developmental specialists, disibility case managers, and finally…we would still need to mourn the loss of our “perfect” newborn baby girl. How would this change our plans for a family… how will this change HER future? After all, we can’t even celebrate her birthdays with a traditional birthday cake for God’s sake, because her diet would consist strictly of vegan choices for the rest of her life. I could just imagine Kylie blowing the candle out on top of her first birthday cake, then taking it away from her for all of us to eat, and then handing her a carrot instead.
It didn’t take long to realize that we weren’t alone in dealing with this. The first time we took her to the Children’s Specialty Center, we understood clearly as we noticed others that were far worse off than we ever were. As many parents of children with disibilities experience, we began to accept this “card” we had been dealt, and start thinking of it as a challenge instead of a problem. Our perfect newborn baby girl was still just as perfect as she was the day she was born, she was just more special than we had initially thought her to be.
In many different ways, support came pouring in.On occasion, family and friends would show their support by sending special vegan recipes that we could prepare for Kylie that she would enjoy and remain true to her health. As her first birthday approached, I grew more and more anxious whether or not I would find a cake recipe that would work. One day, my husband’s mother sent a beloved family recipe that she had remembered her mother making for them as kids. It was loved by all, because it was simply “crazy” that a cake could be made without eggs or milk and still taste amazing! As I followed the hand written and weathered, old-fashioned recipe, I was hopeful, but realistic. To my surprise, the finished cake tasted better than any birthday cake I had ever made with eggs. Our perfect one year old had a perfect birthday as she blew the “one” candle out on top of her perfect birthday cake!
Thanks to that beloved family recipe, we came to the realization that Kylie’s disorder would not be an up hill battle in our lives. We would come across “speed bumps” every now and then, that we are capable of handling with the love of family and friends. Not only can we deal with all of life’s “speed bumps”, we can even have our “crazy” birthday cake, and eat it too!!