The Whole Truth

I always wanted to be a mother.  I cried as a teenager while visiting my friend's newborn niece in the hospital.  It was always my biggest desire.  In 1995 it came true.  She was born, healthy, 10 toes, 10 fingers, she was perfect.  When she was a week old I received a phone call to come in for her second PKU test, the first one had been a little high.  It was the next day when we heard the test results.  They told me on the phone that my 8 day old baby had PKU.  What IS PKU?  Panic.  Fear.  I called my parents and asked them to accompany me, Tim, and newborn Alyssa to the hospital for our meeting with all of the professionals.  It was the day of the OJ Simpson verdict.  I remember watching it on TV. Not guilty.  Then we got in the car to go to the meeting.  As I look back, I realize how little they told us.  They knew.  They knew not to give us too much information, that we could only soak in a little at a time.  That is my advice to any new mother of PKU.  Don't jump ahead, take it one step at time, one ounce at a time.  And, more than anything, enjoy every step, every ounce.  They are just like any other baby, sweet, soft, hungry, poopie, and NORMAL.  Joy.  Love.  Faith.

3 1/2 years later, expecting our second child.  A boy.  He won't have PKU right?  It's only a 25% chance.  He was born, healthy, 10 toes, 10 fingers, he was perfect.  As I packed up to leave the hospital and bring my sweet boy home, there was the call.  Our doctor wanted us to come in and meet with her. "Just tell us," my husband said.  "Shit," I said.  I took him home and opened a fresh can of Phenex.  As I fed him from his bottle, I put my face close to his, it was the same smell, the same formula.  This time, it was pure sadness.  No parent wants their child to have to live with difficult things, now both of mine had to.

6 1/2 years later, expecting our third child.  We weren't planning on a third child until our second one left me and went to kindergarten!!  Two children were not enough, PKU or not.  We would have one more.  She was born, healthy, 10 toes, 10 fingers, she was perfect.  I was on a cloud!!  I would experience all of the "normal" things of nursing and feeding!  She was meant to be, perfect!  Then, the phone call.  I was at home.  I felt like I had been swinging high in the trees when someone came along and cut the ropes.  I fell....hard.  Anger.  Bitterness.  Why me?  Why her?  Why?  I told my kids.  "Yes!!,"  they said, "Now she can't stuff her face like our cousins do!"  They were happy.  I was not.  I fought back tears, I couldn't have them see me cry, but I couldn't keep it together.  I couldn't talk to anyone.  It was three days of sadness, three days of anger, three days of feeling bad for myself, until I woke up on the fourth day and I was fine!  Life was good.  I put my face close to hers as I took in the smell of her formula.  Heaven!  That's what my babies smell like!  Beautiful, life saving, lovely, delicious, creamy formula.  That is how my experience of being a mother is and I accept it.  Healthy, 10 toes, 10 fingers....PERFECT!

PERFECT!!