Cruel Trick

My sweet Waverly is going through a phase.  At least I hope it is a phase.  This month has been difficult.  She has been sick the majority of January.  I am hoping that her body's need to recover is behind these changes.  She is so vacant.  She has been very quiet - not much singing and no "mommy"s.  She isn't smiling or giggling.  For those of you who know Wavey, this is very uncharacteristic of her.  She is silent.  She simply wanders around the apartment, occasionally stopping to look at something for a moment, then she moves on.  Her tongue is constantly out of her mouth and she is drooling a lot.

December was an incredible month for her.  She was saying "mommy" again, singing "Row Your Boat" and "Happy Birthday".  She was so engaging.  I remember thinking she is doing so great and behaving so perfectly.

The other night, as Matt and I were discussing the changes, he made a wonderful observation.  Waverly has always had a peak before she loses additional skills.  I could look at it two ways: a cruel trick before another part of her is taken or a gift before that part is gone.  My point of view seems to switch from moment to moment.  Tonight it feels like a cruel trick.

Oliver is beginning to "look" like a little boy with Sanfilippo.  For parents of these kids, they become easy to spot.  He has looked like he's had the disease for a long time.  But it is beginning to manifest itself more as he gets older.  His left foot is turning in slightly.  He is becoming more and more hyperactive.  He wakes almost every night for a few hours.

We always looked at Oliver as the "before" model.  This is what Waverly was like before Sanfilippo took hold.  However, now the disease is taking hold of him.  It is quite jarring for me.  I think I expected it to be easier, since I knew what was coming.  But nothing can make this any easier.