In the beginning...

Twenty years is a very long time!

It's also hard to believe that that much time has passed since our VSBJ (very special bundle of joy) joined our family.  What a beauty he was.  A real ham, too.  He smiled at me the first time when he was about a month old, and occassionally, he'd make these little monkey faces that were just too cute.  Like he was closing his eyes and puckering his lips to give me a kiss.

I actually caught one of his monkey faces on video and shared it, because he didn't do it all the time and it was just SO DARNED CUTE.

Except that it wasn't. 

What I didn't know was those monkey faces were just a precurser to some pretty debilitating seizures ~ infantile spasms ~ that would develop when he was 3 months old.  Oh my!  Those seizures were frightening.

He would hold his arms out like he was holding a ball, pull his knees up to his chest, and sometimes hold his breath.  Not good.  A call to our GP got us in to see her partner 2 days after these seizures started.  Not good.  The office visit ended in a diagnosis of GAS.  I was sent home with a bottle of Mylanta.  Not good.

Another call to the GP's office.  Thank goodness our regular doctor was back in town!  This time, we went to the hospital.  After many tests that I didn't understand at the time, our lovely VSBJ was diagnosed, for real, with Tuberous Sclerosis.

Wow!  No air in the room.  Breathe.  Just breathe.  In.  Out.

What a strange name.  Tuberous Sclerosis.  Interns at the hospital came in to observe our VSBJ.  They talked in hushed tones, looked at the special 'tattoos' that were all over his body, and talked to me about the infantile spasms.

I learned how to give that sweet, smiling, 3-month-old baby a shot in his thigh.  Deep breath.  Squeeze the thigh.  Insert the needle.  Inject.  Pull the needle out.  Apply the bandaid.  Hold the screaming baby.

After three days in the hospital and three days of "shot practice" we got to go home with a prescription for ACTH and a handful of needles.

I got better and faster at giving the daily shot.  Soon, I could do it so quickly that there was no screaming baby afterward.  Thank goodness for small favors.

This was just the beginning.  Twenty years ago now.  So much time has passed.  So many different challenges.  So many unforseen opportunities.

~ D