#runningforlila

A lot of people have bucket lists.  I often see posts detailing friends achieving things on their lists.  They might include a description and some pictures of their accomplishments.   I never had a huge bucket list.  When I was a child my bucket list was 2 items long.  

The first item on the list was to become rich.  I was a kid, so I don’t think I was too unique in that regard.  The other item I wanted in my bucket, more than being rich was to have a happy family life.  I won’t bore you with the details of what generated this goal, but suffice to say a future happy home would be a departure.

And then I got married. Bucket filling up…off to a good start.

And then I had my first child Gray.  Bucket getting really full.  I remember thinking, “What am I supposed to do now? I’m not rich, but the bucket is full.”

I had (have) many other goals, but no goal ever came close to my wanting a healthy, happy, stable home. What could possibly go wrong?

And then I had my second child Lila.  I thought my bucket was going to overflow.  Instead my bucket sprang a huge leak.

By 6 months we knew something was wrong because Lila was missing milestones.  She had trouble doing things that her brother never did. Our pediatrician, who was an excellent pediatrician, told us not to worry.  “Lila would catch up…this was perfectly normal”, he told us.    To my wife’s credit, she never thought Lila’s development was normal.  It was not.  Water was draining from my bucket faster than it could be replaced.

 Soon Lila was not only missing milestones.  She was regressing, unable to accomplish what she was doing just days before…more water gone.

 Sometime before her 1st birthday we took her to an eye doctor.  We still didn’t have a diagnosis.  The eye doctor looked into Lila’s eyes with his light and he looked stricken.  He told us that Lila had a cherry red spot.  He was talking to us as he practically pushed us out of his office. Drip…drip…drip.

 He told us that a cherry red spot was always an indication of something bad (again while practically willing us to leave).  He recommended we see a neurologist.  Drip…drip…drip.  

 Eleven days after Lila’s birthday the hole in the bucket didn’t matter anymore.  The bucket fully tipped over as the neurologist told us that Lila had Tay-Sachs a preventable inheritable degenerative genetic disease.   She told us that most children with infantile Tay-Sachs don’t make it to their 5th birthday and most die much younger.  

 Tay-Sachs, like so many rare inheritable genetic disorders, is a terrible way to live and ultimately die.

 Lila never spoke.

Lila never hugged us.

Lila never hugged her brother.

Lila was blind.

Lila was deaf.

Lila was in discomfort for a good part of her life.

Lila died one month before her third birthday.

Lila never met her brother Gavin, our third child.

 The bucket isn’t tipped over anymore, but it still has a large hole in the bottom.  My bucket will never fully fill.  

 If you are planning a family, talk with your OBGYN, MD, or genetic counselor about preconception genetic testing because some holes can never be filled once they are made.