Wednesday, September 12, 2012

Crazy Cake Saved My Broken Perfect


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!!


Tuesday, September 11, 2012

Anxieties of a Mother

As her junior year is in full swing, my anxiety is growing more and more intense on a daily basis. Every time I  turn around, there is another paper to sign regarding college prep for one reason or another. I constantly find myself in a paralyzing fear of her being more unprepared for the real world than I ever was.

She isn't like me at all even though I gave birth to her, my first child 16 & 1/2 years ago. I had my whole life planned out from age 5. I guess I expected her to know exactly what she wanted to do with her life, so you could imagine my horror when her dad and I asked her what college she was thinking about, and what she would major in. That one and only question that a kid will be asked more times than they can count throughout their childhood, "What do you want to be when you grow up?", and her answer was, ugh... "I don't know". What?  You have had 16 & 1/2 years to think about it, to dream about it... seriously?.. YOU DON'T KNOW???

Then, what she said next rang through my body like a lightening bolt..."Well, my first choice would be to move to Dallas and join the Dallas Cheerleaders, as dance has always been my true passion." Realistic much? As those words hit my already sweltering, hot ears, I could literally feel my blood pressure rise, and before I knew it, I was yelling and she was in tears. Realistic much? She might as well move to Africa and feed all the hungry children with her lawn mowing money. Seriously, did I shelter her so much that she actually believes that this is even a possibility for her?