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.

Comments

Christine said…
I'm so very sorry to hear this. I will life you and your family up in prayer often this month. Your sharing these times is so important. We really want to pray for you.
Jan said…
I too am praying for you right now. God be with you and bless you and hold you close.

Jan
Jenkins said…
OH Shannon, I wish I had some great words to share with you.

It does seem like a cruel trick.

They are such precious children!
Laura said…
Shannon,
I honestly always thought that it would be harder for you and Matt rather than easier to see the changes in Oliver. I think knowing what is coming makes it worse. I know that you could never imagine anything harder than seeing the changes in Waverly......
I am heartbroken with you. I'm glad I got to meet Waverly in December. She was such a joy!
Misty said…
It is so very devestating, It seems that you have a lot of family and friends to help you through the emotional hurdles. You know that you have a strong MPS family who totally understands your situation. Waverly may gain some skills back again, it seems to happen that they change so very often.Always thinking of you all, Misty
Unknown said…
Totally sucks [period]
Anonymous said…
This is more than any mom should have to witness.

Thinking of you all, wishing that thoughts could make some concrete difference in their world.

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