Ya Gotta Have Faith (originally from Jan. 18, 2015 PKU.com Blog)

Ya Gotta Have Faith No, I don’t mean the George Michaels song, but if humming that gets you through then solider on…. The tail end of 2014 and the beginning the 2015 have really begun to show me what my persistence, dedication, and faith has done for me. I hope that all of you at some point in your PKU struggle can say the same. In July of 2015 my family & I will have endured the PKU struggle for 36 years and it is EVERYDAY a constant struggle, I wish for some of you younger PKUers & families I had better news about that. Does it become easier??? No, not really, but most PKU kids have so much out there & we now know for certain our treatment must remain intact for the entirety of our lives, when I was younger that was not so, that is a bonus, to hope that as a young PKUer you never stray from your path as we older generation PKUers did. I could dwell on these facts, but as I get older (not necessarily wiser) I can’t allow myself to dwell on the negativity of the past, instead with a little encouragement from a medical “miracle” Peg-Pal I find myself not struggling so much to see the light at the end of the tunnel…. I have restored faith, which any family or person struggling with issues like ours from day to day MUST have …. FAITH….whether that is in themselves or a high power, faith must always be present. So what is Faith???? Faith is defined as confidence or trust in a being, object, living organism, deity, view, or in the doctrines or teachings of a religion, as well as confidence based on some degree of warrant. Faith can also refer to a belief that is not based on proof. The word faith is sometimes used as a synonym for hope, for trust, or for belief. No, I also NOT here to get all biblical on you either. The fact is to get through our life we have to come to terms with the physical makeup of ourselves that makes us have PKU which is something we can’t see, so it would stand to reason we must also draw our biggest strength from that which cannot not be seen Faith. In order for us to just keep on keeping on we have to tell ourselves whether out loud or in our heads “things will get better.” Truth is sometimes it does, sometimes it does NOT, doesn’t mean that you are necessarily doing something wrong, just means you have to get over the huddle. I have to say before I started Peg-Pal and even into the early stages of my trails I had to constantly ask myself “Is this worth it??” Truth is it was not only me asking that, but my mother, my father, my husband, my friends….I had to dig down deep & push through blindly believing Peg-pal would ultimately be a good thing if I could just get past this hurdle, that hurdle, & another hurdle… I had to have faith. Yes, I cried, Yes, I waivered (everyone does, its human nature) & Yes I prayed. Slowly (like a snail) my faith was confirmed…. My itchiness went away, my tiredness went away, and my hives went away…. Gotta admit still my joints get sore, but I think that has more to do with arthritis. I would like to say everything is coming up roses now, but that would be a lie. I still have good days & bad days, my lowest level with Peg-Pal so far has been a recent 12, but that is progress… Inch by inch there’s progress. Faith can truly move mountains if you allow it time….. Yes, I know we live in a repaid fire, real time, instant world…. Patience is truly a virtue for us. When all else seems to fail you, your faith never will. I have faith that something microscopic in a clear tube that I cannot see with “fix” a part in me that is broken, that also I cannot see. I have to have faith that God blessed me, yes, I said blessed me with PKU for a reason….many reasons… I’m strong enough to endure, my family is strong enough to endure, my friends are wise enough to help me learn and grow and endure my ailments, it gives me a strength many do not have to summon to speak to strangers about PKU and reach out of my comfort zone to help others with PKU. I strongly believe that no ONE PERSON IS A LOST CAUSE or BEYOND HELP. Some just take longer & need to be hit with a harder hammer before they realize they need to fix things or change. I have Faith in my PKU family & Community that as the world turns day to days we will grow in numbers and support , the world at large will someday know the name PKU and why we must solider on day to day, minute by minute with our treatments ( experiments.) I leave you with this…. It’s my husband & 1 of my favorite scriptures ( I have it tattooed on my back)as well as my late grandfathers…. Isaiah 40:30-31New International Version (NIV) 30 Even youths grow tired and weary, and young men stumble and fall; 31 but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.


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