Skip to content


May 26, 2013

“What we see depends mainly on what we look for.”
― John Lubbock


I am waiting on doctors… Again….

It’s been three weeks since the vision test. They were supposed to call me back after two.

The genome sequencing was supposed to be done in May. Now they are saying August, maybe September.

Time is passing. Life is passing. What are we missing? What are we wasting?

I don’t have a crystal ball. I don’t know what – if anything- we will lose next. Life this way is a constant balancing act between attempting a “normal” life and the frenzied rush to make sure we are not missing anything – that there would be no regrets, no “I only wish we had gotten her the chance to…” The chance to make friends, go to school, play outside. The chance to have a memory of sound, or of sight. Disney, the ocean, the lake, the forest, the trees, the leaves, fireworks, snow falling, rain, thunder.

Every experience takes on a critical new level of importance. As a parent, it makes you step back and realize how beautiful the simplest things are. The wind, the rain, the snow, the sun. Stepping back from the hustle of “normal” to see her revel in such “small” things brings me to tears. My breath catches in my throat watching her enjoy a thunderstorm. Suddenly the wind in the trees may as well be the biggest fireworks display that Disney World could put on. Suddenly the simple is complex, amazing and beautiful. Suddenly God is everywhere, taking us by the hand in the form of a child and saying, “Look. Look at all I have given you.”

Mary’s vision is getting worse, when it “should” be improving. This could be nothing. I want to believe that it is nothing. But I am seeing more signs of visual fatigue. It could be that the good doctor made a mistake and gave her the wrong prescription for her glasses. But it might be something else. I don’t know what the future holds for her. I don’t know if she will lose her vision, and I don’t want to imagine how devastating that would be for her. Just like we have never known how long we will get to keep our precious baby girl, there is one thing we do know. We have her right now. She can see right now. And no harm can come from showing her as much as we can right now. If, God-willing, she keeps her vision, she will still enjoy everything we are showing her. If she doesn’t, then at least we can give her memories of it. Just like everything else with this child – each day matters. Each day, each experience, each leaf dancing on the breeze, each raindrop touching her sweet cheeks, each shadow on the ground, each ray of sunshine that kisses her face.

But I need your help. I don’t want to limit this to my version of beauty, or my own perspective of what is important. Tell me what would be on your bucket list to see if you were told you would lose your sight tomorrow. Brainstorm with me. Give me some ideas. And then, maybe take your own advice, get out there and take a look, and perhaps appreciate it in a completely different way. That can be Mary’s gift to you. A chance to pause, and maybe appreciate the everyday miracles.

“What we once enjoyed and deeply loved we can never lose, for all that we love deeply becomes a part of us.”
― Helen Keller

9 Comments leave one →
  1. Life&Ink permalink
    May 26, 2013 3:04 pm

    I am going to work on my assignment and report back tomorrow! 🙂

    • May 26, 2013 3:04 pm

      Thanks! Looking forward to it. 🙂

      • Life&Ink permalink
        May 26, 2013 3:05 pm

        So am I, Erin. So am I! 🙂

      • Life&Ink permalink
        May 29, 2013 3:39 am

        Color. I think more than anything I would miss color. You can’t touch color, you can’t smell color, you can’t taste color. I am not sure any other sense but sight can detect color. I started taking photographs of all the colors around me on Sunday and I hoped to put the colors together in a collage to post for you but I haven’t been able to complete it yet. Tomorrow we leave for Meg’s freshman orientation and registration, we’ll be back in a few days and once we settle back down I will get the collage finished. I always enjoy having a project to look forward to! 🙂

  2. May 27, 2013 2:37 am

    Rainbows. I would want to see color, rich and deep and vibrant – Show her real rainbows, and those made with hoses, and those made with prisms with light shining through them. Show her stained glass, be it in church windows or take her into the Mapparium at the Christian Science Church in Boston, near the Prudential Center. I would want to see the gentle beauty of the ocean on a peaceful and and how strong it can show itself when the wind has drummed up and changed direction. Let her learn that so much of what we can see we can feel with so many of her senses so she can enjoy it bodily and completely so, if God forbid her sight fails, the memory will be written on her heart already.

    I’d be a burr on the doc’s butts for you if I could be. That wait in and of itself is cruel and unusual. 😦

    • May 27, 2013 3:22 am

      I love these ideas! Thanks Nicole. 🙂 I will add it all to the list.

      As for the doctors, we are unfortunately used to waiting. One doc orders the test, the other one runs it, then it takes a bit to interpret results, etc. Her ophthalmologist said she doesn’t see any obvious signs of retinal degeneration on exam, but wanted to run this test to be sure, and possibly provide a baseline for future tests. The fact is, we still have no unifying diagnosis, so we still have no defined path. So when we find anything that has changed – especially something that has worsened- it raises flags because we have no way of telling if it will continue to get worse. But, be sure, if I don’t hear something first thing Tuesday, I will become a real nuisance. Believe me, I know how. 😉

      • May 28, 2013 1:26 am

        We tend to create an art to being a nuisance. I called the same person at CommonHealth every week on the nose until, three months later, they finally got me answers.

        Shawshank Redemption has teaching moments.

        I hope those answers are there Tuesday, as much as can be.

  3. May 28, 2013 7:15 am

    My heart goes out to Mary. What else could you do to get more clarity about the problem? What could be your other options going forward?


    • May 28, 2013 9:06 am

      Thanks Shakti. I am hoping to know more later today. I am hopeful that this is just another case of the doctors being overly cautious with her – good for her, tough on me. 😉 Once we have some more information, hopefully we will have some options. But for now, it can’t hurt to just enjoy what we have.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: