Wednesday, July 13, 2011

Phthisis. Retinal Detachment. Band Keratopathy.

Those are the three words written on sticky note by Lexi’s opthamologist.

I didn’t realize how much I had held onto a sliver of hope that doctors here in America could do something for our Lexi’s eyes until I read those words. When we reviewed her file and fell in love and decided to adopt, we did so knowing that she was completely blind, and knowing that she would likely always be so. And whether or not there was anything that could be done to give her some vision had no part at all in our decision.

But I still held on to the idea that maybe, just maybe, sweet Lexi could have some sight. Shadows. Light perception. Anything.

We wanted her to be seen by a pediatric opthamologist from Primary Children’s. It took several months to get her in, so that entire time I was cautiously hoping, hoping, hoping. When I finally brought her in, the eye doctor was very optimistic. I told her that she was completely blind, and he said, “Well, I don’t know about that. We’ll just have to see!” He then went on to talk about various things that could likely be done to restore some vision. He spoke with hope. This after just a partial eye exam. So, for a short time, my heart was beating fast and I became a bit giddy inside.

Then he did an MRI on her eyes.

As it turns out, there is absolutely nothing that can be done. He sympathetically wrote those three words down without being able to look me in the eye the rest of the time I was there. He told me there was no reason to have her seen again unless she experienced such discomfort in her eyes that we wanted to consider removing them and giving her prosthetics. I put on my brave smile, assured him we already thought that was the case, and proceeded to gather our things.

Then I walked out to the van with Lexi, and I cried.

I allowed myself the evening to feel all of the emotions that finding out your child will never see (in this life) can bring. Then I decided to put a lid on it. After all, feeling sorrow, pity, disappointment, hurt, and grief for my sweet Lexi will do nothing for her but give her a depressed mother. I’ve learned that over the years—after hearing things about my children that I just didn’t want to hear…

Several people have asked how her appointment went, and I haven’t been able to share. It’s been over a month now, and I’m ready. Ready, and oh so grateful for my knowledge that she (and Elli!) will see me someday. That she will no longer tell me, “Mommy, my eyes need batteries. Can you get me some batteries for my eyes?” That every disappointment related to blindness will be compensated for by Christ’s atoning sacrifice. That every tear of sadness will be replaced by many more tears of joy for her!

This knowledge is mine, and I couldn’t live without it.

I love you, dear Lexi.


  1. What a wonderful thing that you know she will be able to see someday. And more importantly, that you will teach her that same thing. Those pictures are beautiful! I think you need to come visit Blue Hills Ward again!

  2. Love you! And I love Lexi!!! I miss her calling my name!!! We need a visit SOON!!!

    So grateful for that knowledge too!!!

  3. Thank you for sharing your life and testimony.

  4. Well - in the silence of my heart I shared that hope...but still....

    You guys have always brought great Witness to our Faith - every day - just by walking the walk, and again you do so now....

    And when I look at that picture of Lexi - and I see that joy - I know full well that you have done more for her than words could ever express - you have given her the unconditional love of a parent!

    Yeah - not thrilled with the doctor's words - but still so happy for you guys....

    love y'all -

    aus and co.

  5. Thank you for sharing and making my testimony that much stronger! I love your kids and wish every time I think about them I had half their strenght and wisdom! Cant wait to visit ya'll again!

  6. That photo of your Lexi is one of the most beautiful I have ever seen. Please know that your child can already "see", ohyesshecan. Maybe even better than we who are 'sighted'. And you know I speak the truth. ((hugs))

  7. The retina is a thin membrane attached to the back of the eye. It carries specialized sense receptors that make vision possible. These retinal cells are known as rods (which register black and white only) and cones (which react to color). A person has about 10 million cones and 100 million rods on the retina of each eye. List of Hospitals in Thialand for Retinal Detachment

  8. Your story is really heart-touching. Don't lose hope! While there is no cure for blindness and macular degeneration, scientists have accelerated the process to find a cure by visualizing the inner workings of the eye and its diseases at the cellular level. By the time your child grows up, there might be possible treatments that can cure her eyes. For the time being, you can visit some medical tourism destinations to see if you can find eye-related treatments that can be of your help.


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