I don’t know when it happened. Maybe it was when I got my first “real” job and the stability that comes with traditional employment. Maybe it was when I graduated college and looked forward to taking a few years off of school before I would eventually pursue my Master’s Degree. Or maybe it was last year when I finished my Master’s Degree and looked forward to some mental rest after so many years of hard work and studying. I don’t know when it was. But at some point I decided that I didn’t like change… That life would be so much easier if things stayed the same.

I should know better. I should understand by now that sometimes things happen that change life forever. I learned that the hard way a few years ago when my grandmother passed away. Now, I don’t know what type of relationship others have with their grandparents. But “Mama” and I had a unique relationship. First, she was the only grandparent I ever really knew. My paternal grandfather and maternal grandmother passed away before I was born. My maternal grandfather passed away when I was six, and since he lived in Tennessee I didn’t get to see him very much. So Mama was the only grandparent I ever knew.

But she was so much more than a grandparent. I have incredible parents, but I was doubly fortunate to have a second mother in Mama. She was the one taking care of me the day my family got the call about my PKU diagnosis. PKU (or Phenylketonuria) is a rare metabolic condition where people are missing an enzyme called phenylalanine hydroxylase, which is needed to break down an essential amino acid called phenylalanine. The substance is found in foods that contain protein.  Without the enzyme, levels of phenylalanine and two closely-related substances begin to build up in the body. When these substances build up, they are harmful to the central nervous system and can cause brain damage.

And since both my parents worked, I spent much of my time after school or even during the summer at her house. I don’t know of anyone else who could be patient with my quirkiness quite like her. She didn’t mind when I put The Eagles in her CD player; in fact, I think she quite liked it. And I don’t know of any other human being alive who would have taken me to see the 1989 version of Batman thirteen times. Yes, you read that right. Thirteen times!

As I grew up our relationship strengthened even more. And when I married she took in my wife, Mara, as one of her own grandchildren.

I don’t think it’s possible for one human being to embody love the way she did.

So when she passed away almost three years ago it was the most gut-wrenching, soul-crushing experience of my life. I still don’t know if I’ve really moved beyond that pain.

Her death was just the first in a series of events that have taught me just how much life can change. In the last few years I’ve lost my grandmother, left a job and an industry I knew very well, lost friendships, lost dreams…

But as suddenly as life can change for the worse it can also change for the better. In three days I’m leaving the comfort and predictability of a stable job to build my video/film production company full-time. I just returned from a weekend getaway with incredible friends I’ve made these last few years. And, day by day, my dreams are being renewed.

Yes, I’ve lost my grandmother. No, the pain will never really go away. But just because I’ve lost and just because I’ve experienced pain doesn’t mean I can’t go on living.

Besides, until you lose something you can’t really appreciate what you had; until you experience pain joy is meaningless.

As my favorite singer/poet Jon Foreman (of the band Switchfoot) says, “The shadow proves the sunshine.”

4 thoughts on “Life Changes: Phenylketonuria (PKU) Survivor Shares Loss of “Mama” Essential to PKU Diagnosis and Care”

  1. Hello dear. I’m 36 yrs. old & could probably write 4 or 5 books on my life & loses. I was daughter of 4 boys & forgot to mention the only girl. Daddy’s baby girl. 😉 he died in Devember17, 1998 which was my sons due date. Thought I’d lost everything when I lost him. My son was born dec. 26,1998… Reason why I’m commuting is your story was so relating in many ways though I had a stroke when he was 8 weeks old. Told I’d never b able to walk or talk again. Was a vegitable. I overcome that tragic tragedy with much determination…. On May 8, 2010 was riding bikes w/my oldest son Skyler. Had a bike wreck. Was sent home from ER. later on that evening to have been air lifted to LR. My brain was swelling the size of a cantaloupe couldn’t walk talk was dieing quick very fast each second of every minute that passed. Today I suffer from a Lil brain loss. Have a titanium plate. In my head. Suffer from a few set backs that effects my life every day. I’m a live though & for most part well. My 2 fine children are healthy & alive as well. My husband & I are seprtated. I not only have a hole in my head but in my heart as well. They r both covered by shields just the one covering my heart isn’t so tough. Thank you for posting your story it was incouraging for not just me but my heart as well.

  2. Kevin Alexander says:

    Thank you so much for sharing your story. I am honored that my blog touched you

  3. Kevin Alexander says:

    hank you so much for sharing your story. I am honored that my blog touched you

  4. Tera Vallery says:

    Hello, I am a behavior health provider at the alternative high school in a small town located in the four corners area of CO. There is a student at the school that has PKU. He is not in a very supportive family and I fear that his health is in major risk. He does not have access to the doctors he should be seeing or any support groups in our area. It would be great if there is someone out there that has PKU that he could talk to and relate to.

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