Strength for the Journey

Relying on God in our strange trip with Mitochondrial Disease

Bittersweet

I had a bittersweet moment today.  As I’m off work at the moment, I’m home all day.  Right now it’s just with Thomas.  Tracey and Erin have school through Monday.

Thomas was lying on the floor scooting around, batting at the toys on the little ‘kid gym’ dangling over his head.  Then I put him in Erin’s rocker with the toy bar.  Again, he was batting at the toys, and pulling on the music making one repeatedly.

These are things I have yet to see Erin do.

Bittersweet.

My beautiful little girl will grab things and put them in her mouth.  She will bang on her piano or any toy that lights up and makes noise.  She rocks and laughs and moves around.  But she rarely looks at us.

Thomas looks at us and smiles.  Erin looks towards the sky and smiles.

Thomas is starting to look our way when we call his name.  Erin will sometimes pause, but not look at us.

All of these milestones that Thomas is meeting are bittersweet because it reminds me of social milestones Erin has yet to meet.

Even though Erin has come a long ways, there are things I fear she will never do.  Her mitochondrial disease has left her autistic.  We may not have that as an ‘official’ diagnosis, but it is certainly apparent when you watch her lack of social interaction.

Bittersweet moments…. that’s when I’m thankful that God is continuing to give me strength for the journey.

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2 thoughts on “Bittersweet

  1. My 2nd was born 13 months after Olivia (who has Cri du Chat syndrome) and it was so very bittersweet to watch him reach his milestones. I totally understand.

  2. To both Elastamom and Dawn, Cri du Chat was one of the syndromes we had to rule out in order to discover my son’s real diagnosis. Cornelia de Lange Syndrome also presents autistic behaviours in many affected with it.
    Every once in a while I compare him with his cousin who’s a couple months younger than him. I have to remind myself that they’re different children, whether or not Avery has his syndromes.
    “Our kids don’t have disabilities, just different abilities!”

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