My Story

Welcome to my web page.  I was born on July 14, 1999, at 3:30 a.m. and weighted 6 pounds 9 ounces and was 21 ½ inches long.  Although my mom had been on bed rest since May, my delivery was easy.  You wouldn’t believe the joy in my parents faces the second they saw me.  They were ecstatic.  My dad, D.K., held me while the doctor worked on my mom, Jacque. 

 Mom and Dad took me home from the hospital the very next day and I got to meet all the neighborhood children and my dog, Casey, the golden retriever.  I was the hit of the neighborhood and children came by to visit me every day.  Life at the Willardsons could not have been any better.  We were now a family and every single day was a treasure to my mom and dad.  Nothing mattered to them but my comfort.  They spent endless hours holding, reading, and playing with me.  Although I was just an infant, my dad thought it was important that I become proficient with the computer and tried to start my on Reader Rabbit. My mom quickly realized that the extra income from her job was not nearly as important as staying home with me and resigned from her job after sixteen years of employment.   

 I had no head control, so at my two month check up, my mom asked the doctor about it.  He said not to worry, that all children progress differently and that since I was such a social baby, not to worry.  I was a social little fellow.  I had the most beautiful smile, a precious laugh, and big blue eyes that sparkled.   

 I was adored by both sets of grandparents and my many aunts and uncles.  We were all getting a little concerned about my lack of head control and little movement in my legs, but we just knew any minute it would be better. 

 On October 28, 1999, our neighbors had a haunted house for Halloween.  I dressed up as a cow and was the hit of the party.  I seemed to have a cold or congestion, so the next day my mom took me to the doctor.  The doctor took a look at me and advised my mom that she needed to take me to a pediatric neurologist.  This was a Friday afternoon, and as you can imagine my mom was a wreck over the weekend.  That night there was a prayer vigil at the church as she prayed that it would not be serious.  My parents love me so much, they could not imagine what life would be like without me.  I was their dream come true.   

 Due to typical insurance bureaucracy, my mom was not able to get an appointment on Monday.  My aunt, Joanie, is a nurse and came to see me that day.  She called my mom and thought I was in respiratory distress and that she should take me to the hospital immediately.  I was already asleep with my mom in the big bed, but she took me anyway.

 THE NIGHTMARE WE COULDN’T GET OUT OF (JACQUE’S VERSION)

 Those at ER had no idea what was wrong with Will, but definitely noticed his breathing was distressed.  He was admitted into the hospital, but we did not get to his room until close to 2 a.m.  Once there, a residence came by and indicated that we should be very concerned.  My heart sank to the floor because I knew then that Will would not be with us for long.  While Will slept with D.K., I paced the floors crying.  I was so scared.  By early the next morning, many of my family members were at the hospital.  At 10:30 a.m. the doctor doing rounds came by and within minutes told us that he thought Will had Werdnig-Hoffman disease and had anywhere from six months to two years.  We were devastated.  How could this be happening?  Why is God letting this happen?  The pediatric neurologist confirmed the diagnoses and again thought he would live for several more months.  Only those who have walked in our shoes can begin to understand the pain. How are we going to handle this?  What are we going to do?  Please wake me up from this nightmare.

 The following day, November 3, 1999, a nasal gastric tube was put down Will’s nose.  The doctors were afraid he would choke.  It only bothered him for a few seconds, then he was fine.  We made arrangements with Hospice care and Lifegift and were on our way home with a feeding machine, suction tank, and oxygen tank.  The nightmare was getting worse. 

 Will’s condition was deteriorating fast.  On Friday afternoon, I was giving him a bath and he began to turn blue.  I immediately put him on oxygen and began suctioning his throat.  The hospice nurse came and recommended we call our minister.  Our minister, Mark Young, came immediately.  We were trying to make Will happy and were singing to him his favorite song “Old Macdonald Had a Farm”.  Will was small but he was a fighter and rallied.  We needed full time nursing care, so we went to the Hospice House.  That night Will would not sleep, he entertained us all.  We made his handprint and sang him songs.  Looking back, I think Will was afraid to go to sleep because he knew he might not wake up.

 Since the time Will went into the hospital, either D.K. or I was holding him the entire time.  On Saturday, we had several close calls, but Will mainly slept through the day.  He would open his eyes and look at either his mom or dad, then go back to sleep.  The next morning, Will’s breaths were getting farther and farther apart.  He was in his father’s arms and staring at me.  We sang him his favorite songs and told him it was okay to go to heaven.  At 7:20 am, Will took his last breath and left our arms to be with Jesus.  Life without our “little pumpkin” will never be the same. 

 Will’s funeral was beautiful.  Mark’s sermon was wonderful and although there was not a dry eye in the church, I believe everyone came out of the church feeling a little better.  (Please read Mark’s sermon and Julie’s letter.)  At Will’s burial site, we all sang “Old MacDonald” one last time. 

 I truly believe that Will was an angel sent from heaven.  In 3 months and 24 days, he changed our lives forever.  I miss my little buddy.

 I want to thank both our families; our church family, especially Mark and the Good News Sunday School class; our neighbors and friends; Barbara; Ed; and Families of SMA for helping us during our darkest hours.

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