Wednesday, February 6, 2008

and my heart pounded...

Ive been writing to my daughter in a journal since I was pregnant with her. Today was an eventful day, and this is what I wrote her:

2/6/2008


Little lady,

It’s a beautiful sunny day in the middle of winter. The warm and gentle breeze skips cheerfully across the Monterrey streets while you nap contently in your bed. You’ve come such a long way in your two little years of life and its days like these that remind us that God never sleeps.

I was remembering the first time I held you. I was lying on the hospital bed seven hours after you were born. The doctors told me that they would bring you to me as soon as I recovered from the epidural, and any minute now, I was going to hold you for the first time. In the distance, I could hear the muffled squeaking of little wheels-

“Its Katy,” dad said “She’s coming.”

I shot up in my bed, not caring about my fresh cesarean incision. The squeaky sound neared, and I began to hear it more clearly. Then, a knock at the door. It was you!

The nurses came in with congratulations and what not- I don’t remember a word they said. I didn’t care. All I wanted was that little white bundle inside the basket. The nurses finally handed you to me and left.

You were so small, round and perfect! You’re thick brown hair had been waxed into a cute little Mohawk. I held you in complete awe and new that from that moment on, my life would never be the same.

We stayed in the hospital for three days, during which you would visit me every three hours- for breastfeeding. I could never sleep. My ears were fine tuned, trained to listen to the sound of squeaky little wheels. Every time I heard them, my heart pounded loudly in my chest.

When we finally took you home, I rocked you in my chair. Holding you tightly, with your little head resting on my shoulder, I cried with tears of joy.
“Thank you God! Thank you, thank you, thank you!”

At first, you didn’t cry when you were hungry. You only huffed and puffed and kicked your feet. No matter what time it was, no matter how tired I was, my heart would always pound with excitement to see you again.

As the weeks turned into months, it became very evident that you were suffering and in pain. At ten weeks, you were hospitalized. They diagnosed you with Rotavirus and Broncholitis. That was that, and your labs were concluded.

A few months later, you lost all your interest in your surroundings. The milestones you had reached were lost as you regressed and became uninvolved. All you ever did was eat, sleep or cry. Every month we took you to the doctor, and every month he said the same thing- you were fine. Then, the seizures started. My heart pounded.

The neurologist started looking for a cause behind the epilepsy. In one month of testing, you were poked and pricked as much as I have in a life time. Daddy and I held you down while the doctors stuck one more needle in your arm. You screamed in fear as you looked into my eyes. All I could do was smile and sing calmly. Little did you know, my heart was pounding.

Your seizures continued. You would suffer from four to six per day. I began dreading the sounds you made when you awakened. That’s when you would get your seizures. I would hide my fear as I held my hand over your chest. All I could do was speak over you.

“Katy, darling, you do NOT have epilepsy. You will come out of this whole ordeal unharmed.”

And yet- my heart was pounding.

The phone call came somewhere in November. I don’t remember the date; all I remember is that dad’s bag was packed. He was going to Chiapas with a church group in one hour. On the phone, was your neurologist. He told me that some blood results had come back with extremely high levels of phenyl alanine. You were diagnosed as a phenylketunoric (http://www.medhelp.org/lib/pku.htm). Dad cancelled his trip.

For a little over a year, we lived the hardest moments of your lives. My heart was shattered into a million pieces a hundred times over. I was told horrible lies about your future and destiny. It’s a good thing that your daddy and I were listening to God instead. What He told us about was sounded nothing like those diagnoses. We stood on His word and it was our rock.

On February 2006, I opened the results from your second EEG exam:

“There is no evidence of Infantile Spasms (the horrible epilepsy type http://www.epilepsy.com/epilepsy/epilepsy_infantilespasmswhich you were fist diagnosed with)”

Again, my heart pounded. I drove to the neurologists’ clinic where he explained to me that your symptoms had inexplicably vanished. It was as if you never had had them!

Two weeks ago, you took your first steps. Now, you’re running through the house like a horse that’s been set free. You explore everything and make a million discoveries each day.

“Ah! Ah!” you say, whenever you see something new.

“That’s right,” I answer “that pot goes BANG BANG!”

Then today, your physical therapist told us that you are ready to go to school. She said that its time for you to start playing with kids your age so you can learn all their little songs and games. Daddy and I are going to start looking for a good school so that you can go for a few hours each day.

Sometimes I stay up late, and others I sleep early. No matter how much sleep I’ve had, I’m up by seven in the morning, because my little girl is bright eyed and bushy tailed waiting for me. That’s when my heart pounds again. I feel as though you have been reborn, and I’m anxious to see you again. My ears are still fine tuned. Only now they’re not listening for squeaky wheels. They’re listening for a little girl shouting a gleeful “Ah! Ah!” ready to take on the world. Dream big sweetie. You will do it all, and then more.
































4 comments:

Patyrish said...

How the heck are there no comments to this!?!??!

I read the whole thing with tears in my eyes and chills. Doctors don't know everything and your daughter is yet another miracle walking on this earth. God bless her. She is beautiful.

Carolyn said...

What a lovely post. And what an adorable picture! Nothing beats a little girl in a tutu. Mads won't wear hers, of course. But I'm saving it, just in case. Oh, and I am with you on the Dora, she rocks!)

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sam said...

I also visited your home page. Katy is a beautiful little girl. I am a pku adult diagnosed at two weeks. My daughter, non-pku, is almost 2.5yrs old. I can't believe missed diagnoses still happen nowadays. There is a reason for everything. Your experiences, mixed with your videoing abilities are reaching out and touching many. thank you and God bless