Those who know me know that I try to maintain a positive outlook on my PKU as much as possible. After all it is just a diet. Even with formula, Kuvan, blood tests and the extra preparation that goes into feeding myself, I know that I am still super blessed to have the life that I do.
I have a huge, supportive family. I am chasing my dreams by running my own dance studio. As a preschool teacher I have the privilege of interacting with some pretty awesome little humans. I have a super rambunctious puppy, Ari, who I love more than anything, and a less friendly but still very love-able cat named Ginger. And most importantly I am marrying the man of my dreams and my best friend, Nathan, this August (92 days and counting!). We own a home together, and I cannot wait to see where our future takes us.
So much has happened in the four years since I have last written a blog, and as usual when life gets busy, PKU has fallen into the background. Most days I have done fantastic with silently managing my diet. Once in awhile I struggle, but that’s to be expected and regardless I continue to be thankful that my situation isn’t worse.
However, I am learning that it isn’t always easy to put a smile on my face when I am experiencing a new milestone for the first time…because frankly our society puts so much emphasis on food in social settings and it can be a huge bummer when you’re reminded of your medical condition.
I remember being in sixth grade and attending my end-of-the-year camping trip with the kids in my class AND the students from the four other elementary schools in our school district. The trip itself was fantastic: canoeing, fishing, archery, campfires, etc. Everything an eleven year old could hope for! To this day I still remember most of the campfire songs that we sang. However, I also remember that one night all of the other students were surprised with cookies…cookies that I couldn’t eat. This may seem minuscule, but it was hard navigating this situation surrounded by kids who just met me and didn’t know anything about my PKU. My mom was fantastic about keeping me calm, and my teacher even stepped in to help. Obviously I lived to tell the tale, but it was difficult. I wouldn’t have handled it as well if it hadn’t been for their support.
Years later college came. I struggled a lot. There wasn’t much on campus for me to eat, and I had no clue what to do so I spent the majority of my first year of college eating salads and fries. I know, fries all the time, that’s like the ultimate dream for anyone who has PKU! Partially true, but it got old after awhile and probably wasn’t the healthiest either. Eventually my mom (super mom to the rescue again!) stepped in and got my expensive meal plan refunded since I wasn’t being provided adequate food, and I was able to stock up on low protein foods instead. Again, I totally survived and continued on to experience a smooth-sailing college life in terms of food, but for a blip in time it was stressful.
Fast forward to the present date, and I am planning one of the most important moments of my life: my wedding day. The day my best friend and I vow to always be there for one another. The day when both of our families will come together to celebrate us. The day that will change our lives forever. Anyone who has ever planned a wedding knows that it’s no joke! There’s venue tours, photographer portfolios to look at, DJ’s to meet, officiants to book, florists to find, centerpieces to make and…food tasting.
Everyone told me that wedding planning would some of the most jam-packed, exciting and memorable moments in my life. For the most part it has been, but no one told me the anxiety I would have leading up to food tasting, because I was terrified there would be nothing for me to sample. No one told me about the brick that would hit my chest as I started crying over salads in front of my fiancé, mother, mother-in-law and our wedding planner. No one told me how worried I would be that my two sisters who also have PKU (one with a much lower tolerance than me) would have food to eat. My mom, who I’m sure was shocked and devastated when I started sobbing, did her best to diffuse the situation. Later when telling my older sister what happened she sympathized with the whole situation. She doesn’t have PKU, but I think she remembers how uncomfortable it was when we were younger and went places that didn’t have food for me. Honestly? Although we aren’t completely out of the woods with this whole wedding thing, just knowing someone understood why I got upset helped and has alleviated a lot of my anxiety.
Anyway, now that I’ve rambled my point is this: I’ve noticed that I tend to struggle with new milestones or change when it comes to PKU. Once I become a little more comfortable with each change I tend to be okay. I find a new “normal” and figure out how to handle PKU in that new situation, and then all is well again. I struggled when meeting new kids as our school districts elementary schools merged into one middle school. I struggled with moving away to college, and now I’m struggling with wedding planning. I know there will be more struggles as I get older, but what has helped me the most? Support. Having family and friends look out for me as I figure this crazy thing called life out. The support my family and friends have given me has helped tremendously with reminding me that everything will be okay and what may momentarily feel like a huge deal will later seem tiny.
As your family member with PKU is experiencing life changes reach out to them. Make sure that they are transitioning to each new stage of life with ease and offer a hand or listening ear when needed. Those who have PKU: don’t be afraid to seek out help! I know for a fact I would not have been able to move on from these bumps in the road as easily if it hadn’t been for my mom, my teacher, my sister and so many more who have let me lean on them! And don’t forget that even if it’s hard right now, that doesn’t mean it will be like that forever. Life wasn’t meant to be easy all the time!