January 8th

Throughout history, January 8th has held difference significances.  In 1815, the famous Battle of New Orleans was fought.  In 1935, a baby boy was born in Tupelo, Mississippi, and he went on to sing about hound dogs and jailhouses as the "king of rock and roll."  In 1987, the Dow closed above 2,000 for the first time.  In 2011, Representative Gabrielle Giffords was shot in a brutal massacre that left several innocent people dead in Arizona.  Good things and bad things happen every day, and dates hold significances to different people for different reasons.  Also--good and bad. 

January 8th, 1992 holds a tremendous significance to me because that is the day that I lost my daughter.  No, I didn't lose Katie to death.  Not a disease.  Not a horrible accident.  Rather a diagnosis.  Of course, Katie did not die with that diagnosis.  But the child I believed she would be, did.  The child for whom I had hoped.  The child for whom I had dreams.  The child for whom I had plans.  That child died.  The little girl that would grow up to be a cheerleader.  The little girl that would one day be a beauty queen.  The little girl that would crawl in my lap and hug my neck.  The teenager daughter that would tell me her problems and get advice about boys.  The young woman that would one day walk down the aisle on Jeff's arm wearing my dress.  That child died that cold, January Wednesday in 1992.  And a part of me did, as well.

Every year, I look back on that date, and I remember almost every detail of it.  The feelings.  The fear.  The frustration.  The disbelief.  I recall the days leading up to the dreaded appointment at Vanderbilt Children's Hospital.  I remember the look in my mother's eyes knowing her baby was about to endure the hurt of a lifetime.  And my Jeff--trying to be strong and brave for both of us.  Telling me everything was going to be okay behind a forced smile.  Friends trying to be reassuring, but their words falling on deaf ears.  And Katie--dressed in her typical precious girly outfit with her trademark hair bow.  It was just another day for her.  She looked at me smiling and kicking her feet in the car seat on the way to Vanderbilt.  Little did she know that she was going for a battery of tests and evaluations.  Tests that would leave her fussy and tired, but also with a label of "cerebral palsy" and "developmental delay." 

Katie had not developed normally since her birth in 1990.  She did not sit up correctly.  She did not crawl.  She did not coo.  By ten months, she was still very much like a two or three month old baby.  She had been involved with about six months of intensive physical, occupational and speech therapy.  She had made tremendous strides, so as a new mother, I tried to tell myself that she was "catching up."  In my heart, I still saw huge deficits, but I had to believe she was okay.  The alternative thought was too painful.

Her evaluations began early, and she was poked and prodded for hours.  She cried and looked to Jeff and me for comfort, but there was none to give.  A test would be administered that needed an action as a result.  But there would be not action from Katie.  This went on for what seemed like hours.  By lunch time, she was at her limit.  I remember walking her and singing to her as I tried to comfort her.   After a few more tests, we were assembled together with all of Katie's therapists and evaluators for the results.  We were told to let them know if at any time during the meeting we needed some time to compose ourselves.  Jeff and I braced ourselves for the life changing words that followed.

Cerebral Palsy and Developmental Delay.  Was it fatal?  Was it curable?  Our questions rolled out like a freight train.  Whatever the problem was, we would find the fix for it.  I remember Jeff's devastation to the answer to his question about Katie being able to "catch up."  No, she wouldn't catch up.  She wouldn't ever do many things in life.  She wouldn't ever talk.  She wouldn't ever walk.  She wouldn't ever go to normal school.  She wouldn't ever be a normal child.  She would never develop mentally to more than a four or five year old child.

I remember how "matter of fact" all of the doctors and therapists were in that meeting.  There was a level of caring to a degree, but it was just a diagnosis to them.  It was our world.

In the twenty years that have followed, our lives have changed drastically.  Katie has grown and surpassed so much of what they said that day.  She has touched everyone with whom she has come in contact in her life.  She has been the biggest blessing in my life, and I thank God for her daily.

At times, I still mourn the daughter that I lost that day.  But most days, I celebrate that daughter that I was given that day.  I have never experienced many "normal" things with Katie, but the things that I do experience with her are the highlight of my life.  Her smile can light up a room.  Her laugh is contagious.  Her unconditional love and care for others is remarkable.   She has been the cement in our family, and she is the bond between all of us.  She has taught her brothers the importance of compassion and unconditional love, and these traits are a key part of their lives.

The fellow families of children with special needs that we have known have enriched our lives.  Katie and other children and adults with special needs have shown us so much in their strength; their determination, and their acceptance of the life they were given to live.  Indeed, they have been some of our lives' greatest examples!

Many years ago, a dear friend, Angela, made a comment to me that I have held in my heart all these years. I was having the proverbial "pity party" that I tended to have often in those early years.  I was very depressed over the overall future journey our family would travel.  I commented that life was simply not fair, and God just did not care about us at all.   She asked me to realize how lucky I was because Katie was guaranteed an eternity in Heaven.  Katie does not know the difference between right and wrong, and she will always be like a little child in those ways.  Angela mentioned that other children may grow up and forsake their relationship with the Lord.  But not Katie!  One day Katie would be made whole--and it would be for all eternity.  And I surely want to be there for that!

Those thoughts have remained a fixture in my mind through all of the challenging times--and we've had plenty with Miss Katie!   Any child does not come with a manual on how he needs to be raised.  Raising a child with special needs is not an easy task.  There are times when you feel like you just cannot handle it anymore.  There are times when you feel like you are all alone in this world--and that no one understands.  There are times when you just long for "normal"--although we have learned that "normal" is relative.  Our "normal" just includes a lot of things that yours does not!  God gave me Katie for a reason, and I'm still not sure why.  I just know that she has made my life full.  I know that I love the daughter that I have--and finally, I don't regret those things that I seemingly lost in that diagnosis meeting twenty years ago today. 

So, after a twenty year journey, this date does not cut me like it did several years ago.  I truly lost a child that day.  The child for whom I had hoped.  The child for whom I had dreams.  The child for whom I had plans.  But I gained a child that day.  The child through whom God would give me hope.  The child with whom God would grant new dreams.  The child that God had planned for me.  Today I truly know that God replaced the grief over a child lost, with peace over a child gained.  He knew, and continues to know, the BIG PICTURE, and I just feel very blessed that He chose me to be Katie's mom!