Tuesday, December 2, 2008

Late thoughts on gratefulness

Painful thoughts can enter your mind at any moment. For me, it was today, as I was getting Katy buckled into her car seat. Having just finished her supper, I was doing the usual mental math to recap the amount of protein she consumed for that meal. I calculated that she had about a gram and a half. I was proud of how much I was able to make her meal stretch. That's when the thought that has crossed every PKU parent's mind ran through mine-

"How Unfair"

I sulked inwardly, thinking of all the great stuff I wish I could feed my little girl. I imagined cheese cubes, and yoghurt cups. I thought of cookie jars and sandwiches. Is that too much to wish for? To hope that my daughter can one day eat the nutritious food and not have to worry about it damaging her brain?

How unfair!

But then I thought about the Norwegian doctor- Folling, who insisted on finding the cause for mental retardation in two siblings. I thought about his pioneer research in the 1930's that led to the discovery of Phenylketunria. It was his enlightenment that led others to take up the torch and walk the next mile. From him came those who advocated and made blood screening at birth mandatory in the united states (that foot stick they do at birth). Then, there were others- like Virginia Shuett- who spent their entire lives finding ways to feed people like Katy. PKU is one of the few genetic diseases that can be controlled by a diet.

There are so many other metabolic conditions that have no cure. Many are even fatal. That is not the case with Katy. We have research, support, information, and many types of foods fabricated to make PKUers live a more normal life. We have a formula that supplements her nutrition, a geneticist who checks up on her development (and always gives us good news), a well informed nutritionist, a whole team of therapists, and best of all- we have what so many other families wish for-


So, even though this thanksgiving my daughter could not eat turkey, I am grateful that she could sit at the table and much on her special Cambrooke's food as we shared smiles, love and laughter.

PKU- what a cinch!


Eudea-Mamia said...

Oh honey - how many times that has gone through my mind. It's totally cool to think it.

But you're so right! When we have to go to Children's for the 6-month checkups, I see how good we really have it. I honestly feel like a fraud - how many of those parents would gladly swap places with me? The kiddos waiting for transplants, the ones wearing the masks because of chemo.

I imagine if I walked up to one of the moms and said, "I can cure your child, but he won't be able to eat the same as you." I can only imagine the smile, the weight lifted.

That doesn't make what we as parents do any easier, but I know it's a small price.

My firstborn son, non PKU, has food allergies - anaphylactic to peanuts. I worry more about him, you know?

E-mail me directly if you want - eminpursuit@yahoo.com. Your comments come through as nonreply, so I can't get back to you.


P.S. are tree is only up because my parents were here for Thanksgiving, or yes, it would still be in the attic!!

Eudea-Mamia said...

"are" tree - WTH!

Our tree. Honest, the brain cells just keep falling out my ears.

And I LOVE that you have Photoshop mistakes as one of your links.

In my pre family life, I started off as a copy editor, and moved into graphics, eventually an art director for a local niche publication.

How I miss my Mac!!

Carolyn @ momsontheedge said...

Ah, she's so beautiful! And she's lucky to have such a great mama. :)

Patyrish said...

This post...is one of the many reasons i love you.

somebody said...