Tuesday, November 11, 2008
Pink and Precious.
All the many names given to our beautiful daughter.
She was born on July 24, 1998. She was so tiny. And very blue. She did not breathe on her own right away. Her Mom got her to take her first breath. We named her Ashley Ruth Wilson Beach.
Ashley - the name her daddy gave her when he first learned I was pregnant.
Ruth - after my dear Mimi, Ester Ruth Farris.
Wilson - my maiden name.
Beach - our family name.
Ashley Ruth, as her brother Chris called her, was a great baby! She slept! She ate well! She was rarely fussy. We dressed up like a doll - somethings in 4 or 5 outfits a day just to take her pictures! She wore preemie clothes for 2 months and slept in a baydoll basket my grandmother had made for my babies.
All was quiet and peaceful until she was 6 months old. Then a roll from a bed, combined with medication she was taking, caused a tear in her carotid artery to clot and 24 hours later cause a massive ischemic infarct.
Early in the morning, we were awakened by her screams. We tumbled over each other as we rushed down the hall to see what was wrong. Hours later, the projectile vomiting began - 10 feet through the bed rails across the room and down the wall.
Most of the rest is a blur. Doctors visits. Coming home. My mom holding her as she began her first signs of seizures. My mom, her Gran, holding her when she had her first grand mal seizure. Emergency room, ct scans, admittance and the word "stroke."
Nine and a half years have passed and we are preparing for her 3rd surgery. In three months, she's gone from hiking in the woods to using a wheel chair. Her tendons have tightened. The dystonia is worse. (Dystonia is like a spasm or uncontrolled muslce movement. Think of a person with Parkinsons Disease.)
Two months ago, I was beginning papework for surgery with the Shriner's Hospital in Utah. Two weeks ago, it became apparent that she needed the procedure quicker than the Shriner's could accomodate. One weeks ago I was hoping we could have surgery within 3 weeks. Today, I have 6 days to prepare for a 3 day trip.
Those are the new titles she's been given. Every teacher who wrote me, called her a Trooper! What a great legacy! Nothing keeps her down!
So, one week from today,we will be in Denver, CO. On Wednesday, November 19 we will check into Denver Children's Hospital (www.thechildrenshopsital.org) and at 2:00 pm, Ashley will go into surgery with Dr. Frank Chang for a Strayer Procedure on her soleus tendon.
I'm giving you specifics so that you can pray with specifics. David and Chris will be here. It's important each child have a parent with them. Chris is the ultimate big brother, her first physical therapist and best advocate.
Our friend Marilyn Rogers will be traveling with Ashley and me. We will leave early Tuesday morning, stay in the hospital Wednesday night and return home Thursday.
And some time on Friday, I'll breathe!
But I will rejoice! I will rejoice that God redeems the pain of this world! I will rejoice for the joy that is my daughter!
Father - hold me tonight.