I walk a lonely road....

I walk a lonely road….

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I walk a lonely road….

September 25, 2011 in Uncategorized

I Walk a Lonely Road.... I suppose the most commom things I hear from fellow PKUers and PKU parents is "I'm all alone," "there's nobody else out there like me" or something to that effect, believe me I've said thes things myself and honestly I still do from time to time. It's sooo easy for others to sit there and offer encouragment by way of, "you're not alone," "don't give up" ---Generic much???? Duh!!! Of course, deep in our depths we KNOW we are not the only ones. First, let's talk statistics, they speak for themselves very well. Approximately 1 in 10,000 to 15,000 newborns are born with PKU in the US alone. That means there are currently about 27,200 PKUers in the US. See stats are easy to spill out. All a person has to do is google it, but frankly, they are just cold, empty, hollow numbers not warm, flesh and bone connections. You can't call a statistic late at night on the phone in tears or angry because you can't find any liquid non-dairy creamer to put in your cereal at the local super wal-mart. Numbers are not much comfort. Next, most clinics and doctors' offices are run by non-PKUers, not that, that is a bad thing. While these professionals are trained to empathize with us and our families, honestly, most just don't get it. They try thet really do, my team at Children's Mercy in Kansas City, Missouri is AWESOME. They make me feel great, but even they admit "this is easy for us to say, we don't live it though." This is a main reason why I enjoy my visits with them, but ultimatley, I still feel isolated when done there. Lastly, the PKU community at large. You would think that a PKUer or their families could find comfort and support here, right??? In some cases, WRONG. Granted in this day and age it has become easier to find more PKUers around the globe with social networking and the internet. As a PKU adult I have observed a strong dividing line between PKU adults, "Diet for Lifers" and "1st Generations." Meaning young PKU adults and older PKU adults or those that have had the fortune to be born when it was discovered our treatment MUST be followed for our entire lifetime and those of us, me included, that were told at sometime or another during our lifespan it is okay to abandon treatment. Like the epic battle that has begun when time began; young doesn't understand old and old doesn't understand young. In the past few years many regional and national PKU oraganizations have taken up the torch for the 1st Gens and have persued helping us return to our treatments and attempted to created events geared towards them, but change takes time. "Change takes time." True. While we wait for the changes we still feel alone. At least once a day I feel alone and discouraged, but then I log onto my computer and see all of us around the globe blinking updates on my facebook. Since Kansas and Missouri has no real regional PKU group to speak of I must rely on connections via computer, but most regions do have groups. Seek them out; diet for lifer or 1st gen. 1st Gen. has a responsibility to younger PKUers to show "hey, we grew up just fine." while we have ou problems from our non-diet times those times hopefully won't happen for them. We survived the rough lonely road. Young PKuers help us older people and listen; some of us are still getting over being taken off diet. Older PKU parents, like my mom, have, a TON of advice to offer all the younger PKU parents --Of course these messages only work if they are heard and taken to heart. I am not saying don't get depressed, its gonna happen, don't feel isolated, you will. Take solace in the fact there are hundreds of us out here to offer an "ear" and "shoulder" even if its via the world wide web. If you saw me in everyday life you would think I'm a facebook junkie or addicted to my phone, but the truth, that those close to me know is my phone and facebook is OPEN FOR BUSINESS 24 hours a day 7 days a week 365 days a year to listen and help PKUers, to point it tests my marriage and family ties, but ultimately they know I do it out of love and support for others. There are a few that have tested this theroy. You are not alone ---if you can't find anyone else look me up. www.facebook.com/lamasbaker I'm always here or there and I will find you more friends that are happy to be around for you as well. www.youtube.com/watch
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