"You don't climb mountains without a team, you don't climb mountains without being fit, you don't climb mountains without being prepared and you don't climb mountains without balancing the risks and rewards. And you never climb a mountain on accident - it has to be intentional."
Soooo. many young PKUers and parents ask me how I have survived by 35 years with PKU, my answer to them is in truth it's all an "act" I haven't "survived" a thing....Not yet anyhow, I'm still alive & kicking fighting my own personal war inside me. I'm sure many Pokers can relate, I've often equated a returning PKUer to having an addiction...which is true you know it's bad for you, but the instant gratification outweighs your knowledge you’ll regret the act in the morning & do a terrible life altering “walk of shame.” My simple advice is, “you have to take the good with the bad” having PKU is kinda like being married for your ENTIRE life to a hidden monster inside you; for better or worse. The best thing you can do as a parent is raise your child to know what’s good & bad for them & pray when you release them out into the wild of adult life they can choose what’s best for them…..
PKU for me is a balancing act everyday between the dance with the protein devil & the goodness of abiding by my diet….It’s NEVER easy, frankly, I stumble & fall more times than not to be honest… & my battle is not anyone’s battle, but my own when it comes down to it….I guess being a parent myself I understand the need to always want to catch your little one & take care of them before they fall, but that’s not always realistic nor should it be….we all need to stumble a little to learn how to pick ourselves up & go at it again & again & again…. it's a given we need the “tools” to know what to do, that’s where you parents come in giving us the tools & building blocks we need to go at it alone.
The key thing is also remembering you’re not alone…There’s tons, thousands of us out there that have your back, when you start teetering on the brink of falling off that tight rope , just reach out your hand for a lifeline, someone will be there to catch you. That’s the great thing about living in this day & age, you pop on that little magic box & you can touch a life clear around the globe. Make an effort o connect with other PKUers & PKU families….it’s true they are fighting the same battle you are, help them help you help them helping you (yes I just said that), every opportunity or situation is not only an experience for you I can almost bet another PKUer has had it or is currently going through it or will go through it….
I wish I could offer more advice than that… As a parent or friend image living everyday on a high wire, each day presents us with new challenges & obstacles that when we try to go around them it tips us off balance … you’re our safety net, there when we fall to help get us back up again.
I’m not sure if any of this makes since to anyone else other than me…it is 5am & I’ve been up all night. But this is my entry for Jan 2015.