Monday, November 14, 2011


I watched the faces of my family as they puckered with each lick of the candy. 
 I watched them and couldn't help but think, "that's how my spirit feels." 
Not always.  But sometimes.  A little sour.  A little bitter.  A quick burst of some emotion that takes me quickly by surprise.  It makes my insides turn up and cringe, much like their faces did.
It's a funny thing when you lick a piece of sour candy or bite into something bitter.  You can't help but hate it and love it at the same time.  It's kind of like when you stub your toe.  You want to cry but sometimes all you can do is laugh.
And that's how this feels some days.  I want to look around and cry, yet all I can muster up is this awkward, unintentional laughter.  It's the kind that is uncomfortable yet calming. 
You know the kind, right? 
I'm not bitter that we have a special needs child.  But I do feel sour sometimes.  I can't help it.  I pray against it and still I find myself jealous of other mom's who don't know what this feels like.  I feel angry at them when they complain about things that seem so unimportant.  It's their life and I validate that--but I just can't help but feel sour. 

I feel sour at the grocery store-knowing that Mabel can't go with me and sit upright in the cart.

I feel sour at a restaurant-knowing that Mabel can't go with us and sit in a high chair.

I feel sour at a birthday party-knowing that Mabel can't eat ice cream and she'll probably choke on cake.

I feel sour at McDonalds-I'd give anything to just let her have a french fry.

I feel sour at parades-knowing that Mabel can't see the floats or that she has no comprehension of what Christmas even is.

 I feel sour when people say things they shouldn't, like that I at least have to thank God for my healthy children. 

I feel sour when people say things in front of me to other people like, "well as long as your baby is born healthy, that's all that matters."  [is it?]

I feel sour when I log onto facebook and see the trillion updates about children meeting remarkable milestones.  [everyone deserves to be able to do that by the's just hard.]

I feel sour at the park when I see children going down the slide.

I feel sour at church when I hear that healing comes when we do not have doubt. [but we're human and doubt is only natural.  I thought healing was out of God's ability and not ours?]

I feel sour when I talk to someone about research and medicine and they want to disregard what I'm saying to speak about God.  [I'm not diminishing God when I talk about medicine.  In fact, sometimes the two go hand in hand.  You don't have to be afraid to talk about new research or technology.  God is still in control of those things as well!!!]

I feel sour most days...over something.

However, this year I have learned to take that sour and make it sweet.  I used to be an extreme optimist.  I found the good in everything.  Now I see that I have become the ultimate realist.  Because without facing reality, we would not be where we are with Mabel, in research or just at peace.  It has been essential for me.  And this is why:
Mabel's seizures are better! because she has a g-tube.
Mabel is bearing weight through her legs! but she needs braces for her ankles.
Mabel is seeing the color red! but only on some days and not really any other colors.
Mabel is 'tolerating' sitting up for longer! but not unassisted.
Mabel is 'tolerating' chewing food! but not without getting so exhausted that she can't do anything else for the entire day.
Mabel is getting so long! but she isn't gaining any weight.

Everything encouraging is weighed against something potentially discouraging.  I make a conscious effort daily to remain focused on the things that are positive and uplifting.  I want to say again that I am not bitter about the things I have mentioned.  Sour is much different.  It's a rigid feeling that you can't control.  It comes quickly and is usually gone just as fast.  But it stings and it makes your face crumple funny and sometimes, that is how my spirit feels. 
Uncomfortable.  Awkward.  "Please hurry and go away."

My family experienced sour and they all forgot about it minutes later.  I experience sour and forget about it eventually.  Sour in your spirit tends to stay a little longer than on the tip of your tongue, but it has the ability to flee as well.  That is what I'm practicing lately. 
Helping the sour flee. 

In the meantime, I'll do the awkward laugh through the sour feelings. 
It always seems to help.


Vicki T from Elgin, IL said...

Your words touch my soul. I have many of the same feelings as I move along this mito journey. I struggle to express my feelings and your words give comfort to my challenges. In this moment, they have given my feelings a voice. Bless you for sharing.



Thank you for sharing your heart with the world. Thank you for taking so many of the thoughts that I have about our journey with Ethan, which are so similar to yours with Mabel and putting them into words. Praising the Lord for your friendship!