The Experience

Almost one year ago we received the news that our son would have a congenital heart defect. We knew that having a baby would forever change our lives, but we were unprepared for the change this new life would bring. We tried to prepare ourselves. We were, at the very least, somewhat intellectually prepared (though no one would have been able to convince me that I could have learned the things that I have in the past seven months of Ayden's life). We knew that we would be on an emotional roller coaster, one that would make us cry and laugh... and sometimes want to throw up.

In short, I had some knowledge, and I felt some of the terror and sadness, but in no possible way could I have comprehended being a heart mommy without the experience. The sights and sounds that I will remember from Ayden's hospital stays are almost unbearable:

No one should see her child stop breathing. No one should listen to the whirl of blood circulating through an ECMO machine and into her child. One shouldn't know how to explain a bilateral bidirectional Glenn. No one should hold her child in the sitting position because he gags and wretches every time he coughs. No one should need to jump to her feet every time her child screams in the middle of the night. One shouldn't need to request that the doctors consider other possibilities when her child has failed extubation twice. No one should learn to put a feeding tube in her child's nose.  One shouldn't think about the things that could be improved upon in a hospital...

In the midst of all the emotion and all of the images and the complete exhaustion, there's Ayden. Handsome, charismatic, perfectly-created Ayden. The kid who smiles with a chest tube. The baby that flirts with the nurses. The little boy that loves wagon rides. The champ that has learned to eat three times now. The child that loves his six WubbaNub friends. Talking, kicking, drum-playing Ayden. A MIRACLE.

God has granted me mercy. He has showered me with grace. He is teaching me patience. He is loving on me with the joy that Ayden exudes in all circumstances, and He has given Ayden, Bryan, and me the strength to endure-- no! to triumph over-- the emotions and images, the experience.

That is not to say that I am not sinful. Even now I sit here and fight the fear of returning to the hospital and seeing the anguish my son experiences in being reattached to the monitor and in being needle stuck for a line. Since the Glenn surgery, the longest Ayden was home was two weeks, and the shortest was 17 hours. We have returned to the hospital three times.

Please, Lord, allow Ayden to stay home until his next scheduled visit.
Please allow him to just be a little boy.

(If you didn't catch that, Ayden is AT HOME! Praise Jesus!)

Mommy insisted that I be given a "Havilah Bath" before I could go home.
I always scream at Ms. Havilah, but, I'll admit, I do smell and feel better!

"Dadda" was my first word, but "Havilah" was my second. (I'm serious.)

I always help the nurses and doctors use their stethoscopes on me.
I'm a good helper.

Please pray for Render Caines. He is Mommy's childhood pastor,
and he married Mommy & Daddy. He has triple bypass surgery today.