My Name is Chelsey Barrett and I have a little boy, Boston, with PKU. I wanted to start this blog to share PKU recipes, life stories, hardships and all the really happy moments of my life with sweet Boston.
PKU (Phenylketonuria) is a rare genetic disease that doesn’t allow the body to break down phenylanine, which is an amino acid found in protein. That means he eats limited amounts of protein (vegetables and fruits) and he can never eat (eggs, dairy, meat, soy, beans, fish) or aspartame products (found in artificial sweeteners and diet drinks.) These are just a few examples and this of course is for the rest of his life. We weigh and count everything he eats (and with a baby, that’s hard work y’all.) We stick him twice a week to get a blood level to send off to make sure his blood phenylanine levels are within a normal range. This is not a diet he can cheat on. If he eats things high in protein (not within his normal range of phe) he can develop seizures, severe brain damage, and mental retardation. A lot of you reading this may already know that information; many of you may have PKU or have a child with PKU.
Now that all of that is out of the way I want to tell all you newly diagnosed parents: I’ve been there. I know all of those overwhelming feelings, fear, anxiety, and disappointment. I remember after I found out Boston had PKU, I felt like this disease was so unfair. How is my baby not going to be able to enjoy ice cream, pizza, burgers, and cake!?! I love all of those things! Keyword “I” love all of those things. What If people don’t invite him to parties, or after school activities, or people are afraid to invite him over for sleepovers. I mean a moms mind wonders—the brain is sometimes an awful thing. But you know what after a few months of getting used to our “new normal” I realized, I can choose to live this life as a burden or a blessing. I chose a blessing. I looked at my perfectly healthy baby, developing just as normal if not faster than all the other non-PKU kids. Because guess what?!?! Boston is healthy, he is happy; he is perfect in my eyes. He probably will never miss any of the above listed food items because he has never tasted them. PKU will not define his life. He has a different diet but honestly that’s it. His diet lets him live a “normal life.” Had he been born 60 years ago his life would have been far different. I get it; sometimes amidst the storm it’s really hard to see all of the blessings, because again, I’ve been there. But ya’ll NEWBORN SCREENING is a blessing; it saved Boston’s life. I know looking at your newly diagnosed baby with PKU you have all these uncertainties but trust me when I say each day will get a little brighter and a little more promising. The hardest part for me was letting go and letting God take control over Boston and realizing that sometimes “A disappointment can sometimes be a divine appointment in disguise.” –Lysa Terkeurst. I know that God entrusted me with this sweet boy for a reason.
I don’t claim to have this life all figured out, I know there will be great days and hard days but I invite you to follow me on this crazy journey as I struggle, succeed, laugh, cry and all the crazy in between phases. You are not alone.
Here we are a year later, all still alive, a little more grateful, a little more wise, a little more blessed, a little more humble, and a little more in love with Boston…
This is our “real life with PKU.”
#bostonstrong #pkuawareness #newbornscreening