You Remind Me.

Earlier this week I wrote a post about how building Gigi up was tearing me down.  Yesterday, we took Gigi to yet another specialist, this time for her eyes.  She has been home almost three months and this specialist was quite honestly the last specialist I consulted on the long list of people that I needed to have see Gigi.  I was concerned with her heart, her hearing, and then, her eyes.  She seemed to see just fine, despite her left eye not tracking the way it should.  I comforted myself in the knowledge that Cate has one eye and does just fine.  She can be blind in one eye and be fine.

Yesterday, we were told that there are abnormalities in the retina of Gigi’s right eye too.  We’re not certain if these abnormalities have been there since birth, or if they’re new, and possibly, progressively worsening. There are some rare syndromes that cause children to lose their hearing and their eyesight in early childhood.  Has Gigi always been deaf? We thought so, but we don’t really know for sure.  Has she always been blind in her left eye? We thought so, but we don’t know for sure.  There’s a whole lot we don’t know.  Currently, that long list includes whether or not our baby will have any vision in the future.

As you can imagine, the even remote possibility of this is devastating.

We adopted Gigi not knowing how much vision she had.  We were prepared for her to come to us just as she was.  When she came, we were thrilled with the amount of vision she had because it meant increased communication possibilities for her given that she was very obviously deaf.  Then she started to learn ASL, and we saw the world unlocking for her.  We dared to dream of an easier life for her.

Yesterday, it felt like the loss of a dream.

Last night I cried.  I’ve cried a lot lately.  I told myself, that for this one night, it was okay.  It was okay to mourn the loss of a dream.  We’ve mourned that loss before.  And then, the next day, we got up, dusted ourselves off, and fought to get that dream back, even if it might not look like what we thought it would.

Tess, you remind me to fight.  DSC_0094

DSC_0097You fought so hard.  I see that same spirit in your warrior sister.

IMG_6333Today I spent the day doing exactly what I did for Tess when we thought our dream was dying.  I researched, called and made a ton of appointments for second, third and fourth opinions.  The dream may not look the same as it did before, but hope is still alive.

–FullPlateMom, who has learned so much from her girls.

 

 

 

One Comment Add yours

  1. Jennie says:

    Oh my! A beautiful photo of Daddy and his three littlest. Precious.

    Like

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