Strength for the Journey

Relying on God in our strange trip with Mitochondrial Disease

I’m not so crazy about this

For the past week we’ve been dealing with something new from Erin: projectile vomiting.

I say ‘new’, but she’s had this before when she’s been sick.  It’s just not been this bad since she went on Prevacid.  I’m beginning to wonder if we’re going to have to see another specialist.  We are going to Indy again this week to see her neurogeneticist who diagnosed her mito.  I think I’ll ask his opinion.

Because of this problem I’ve had to restrict my socializing a bit so that I can quickly whisk Erin away.  At a wedding we attended this weekend, I had to be prepared for the coughing that always precedes the vomiting.  When it came, I quickly sat her up and she only vomited a little.  Then at a 4th of July gathering at a friend’s house, I had left her sitting with my parents and was talking with a friend when someone says “Erin is vomiting all over!”  Needless to say, that was kind of the end of my being able to leave her side.

This little development has coincided with a tug-o-war I’ve been having in my mind: how to best include Erin in family activities, specifically, outings.

We don’t want to just exclude Erin because “oh, it’s just easier to not have to bring her along.”  It’s just that sometimes, our idea of fun is not Erin’s idea of fun.  Last hockey season we went to a Komets game as a family.  We discovered that Erin is not a fan!  She was ok until a goal was scored and they blew the big ‘fog horn’ and everyone was screaming and cheering.  Then she lost it.  She pretty much proceeded to scream for the rest of the game.

Last night we were going to go to our town’s fireworks with some friends.  Erin had other plans as she screamed her head off until I took her home.  She was asleep within 5 minutes of being in her own bed.

It makes me feel guilty that I get annoyed about missing out on things.  It also makes me wonder how we are ever going to do family vacations with her.  I don’t want our other two kids to miss out on things just because Erin gets overstimulated and can’t handle big crowds or being out of her routine.  *sigh*

It’s a balancing act, and I guess we’ll figure it out as she gets older.

It’s on these discouraging days that I have to pray even harder for God to give me strength for my journey.

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One thought on “I’m not so crazy about this

  1. Donna Beck on said:

    When we have large noisy groups in the gym we put cotton in the ears of our little ones who can’t deal with the noise. Maybe ear plugs might help at those loud times. Just a thought. Hugs!

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