Finding PKU Inspiration at the Gym

Of all places to find philosophical inspiration for living with PKU, I came across this profound quote while visiting my local gym the other day.

Click on image to enlarge.

Click on image to enlarge.

Charles Swindoll, the author of this quote, is an evangelical pastor who I had never heard of prior to seeing this quote and subsequently Googling his name. Clearly, the owner of my gym was trying to speak to the mental strength it takes to improve one’s physique, but anyone who reads this passage will likely apply it to their own personal situation.

As such, when I read this quote, I immediately think about my struggle to start a family. Growing up with PKU, I’ve always felt – even at a very young age – that successfully having children would be THE biggest accomplishment of my life. That is because I have always had a keen understanding of the great effort and sacrifice it would take to return to a restricted diet. I knew that mental toughness and fortitude would be paramount for getting me through. Yet it wasn’t until recently that I realized a host of external factors – items beyond my control – could also sabotage the success I so greatly desired.

I started to feel that despite any level of confidence I had in my own ability to stay on-diet, I could not embark in a high-risk pregnancy without a top-notch team. I found that some of the same support systems that were put in place to aid in my PKU care were also some of my biggest hurdles. For example, my husband and I were told we should “seriously consider adoption,” because birth defects were pretty much guaranteed. And on a separate occasion, after being accused of “cheating” on my blood work, I  realized some professionals would rather point the finger than consider the possibility that process improvements might be necessary. Clearly, I am having difficulty trusting the experts I will undoubtedly rely on most during a high-risk pregnancy. I’ve struggled with this reality for some time now…even placed a moratorium of sorts on any deliberate move I might make towards returning to a controlled PKU diet. Reading this quote at the gym though has led me to think about my situation with a little more optimism. Rather than saying, “I don’t know where to go from here,” I’m now in the position to say “okay (*deep breath*), let’s think rationally and clearly about our options…there has to be another way.”

Perhaps I need to redefine what I mean by “successfully having children.” Even though the suggestion cut deep on an emotional level, maybe I do need to take a second look at adoption or foster care. Does it matter to me and my husband that our children be a reflection of who we are genetically, or can we learn to love another child who is in need a good home? Or maybe thinking rationally means recognizing that we’ll become parents when the time is right. Even when it seems co-workers, friends and family members are all starting families, perhaps our turn is just around the corner…when some other opportunity arises.

Reading Swindoll’s quote hasn’t exactly changed my life or provided me with all the answers, but it does help put things into perspective. I’m not going to settle for a less-than-desirable situation or passively accept the way things are. Instead, I must use my drive…my attitude…to find another way.

–NM

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7 Comments

Filed under Maternal PKU

7 responses to “Finding PKU Inspiration at the Gym

  1. Nicole Pallone

    I am appalled at the lack of support frrom your health care team regarding maternal pku! With well-controlled levels atleast 3 months prior to conception, and throughout pregnancy, the risk to your baby is quite low. Controlling your levels is the key and although it can be immensely challenging if you have been liberal with your food choices, pku women often find it less difficult than they expect it to be. There are so many food and formula options now, and kuvan which has no reported problems when used during pregnancy. Mostly though, i think it is true that it is easier to make sacrifices and suffer difficulties for our children than ourselves. Ultimately, for your own health, you should aim to have your levels below 6 (360) all the time. The scientific evidence supports this, but many clinics set a much looser goal simply to increase the chances of success for patients. Good luck on your journey! Be brave and strong and control your levels for your own sake and the babe(s) will follow!

    • Thanks for your comment, Nicole. It’s good to hear a refreshing, new perspective. Does CanPKU have a network for maternal PKU patients to connect? I haven’t been able to connect with any other women who have had successful pregnancies here in the states. I think it would also be good to hear from someone who’s “been there, done that.” 🙂

      –NM

      • Nicole Pallone

        Nicole, I’m happy to help you connect with someone. Where in the states do you live?

        Cheers,
        Nicole

        Nicole Pallone
        Mom of Rosie, 4, (PKU) and Carmella, 1
        Vice President of Canadian PKU and Allied Disorders Inc.
        1-250-910-6426; http://www.canpku.org
        Because Knowledge Leads to Better Health

  2. All the best – hope you’ll find YOUR way soon.
    Love,
    Katie xxx

  3. Kylee

    Hi Nicole! I’m a pku mom to now 3 children, my youngest is just 4 weeks old. Your story is so awesome! I’m happy for you as one who also struggled to get pregnant as well. I’m not sure where you are located but I’m in Michigan. I’m not on Facebook but would love to connect with other pku moms. I’m feeling a bit lonely these days in my struggles to keep my diet up and take care of everyone else. Would love to hear from you sometime!

    • Hi Kylee – apologies that my blog is so out of date…today is actually my daughter’s second birthday so that should tell you how long it’s been since I last posted an update. I’m tickled that you found me though and reached out. Since you’re not on Facebook, would you like keep in touch via email? My email is nicole.a.novak@gmail.com.

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