Friday, March 28, 2008

Learning

By Kristine John

This life is full of new experiences and adventures.

Last Friday, we took our children to Albuquerque so that our 4th child, Thomas, could have an
Electroretinogram (ERG) performed on his eyes.
This meant his eyes were dialated for most of the afternoon following the test, hence the styling sunglasses!

A little history for you: We have known since he was 2(ish) that he had difficulty seeing, but it wasn't until he started school and his kindergarten teacher started asking multiple questions that we realized that his glasses did not correct his vision to 20/20.

Over the course of his life, he has seen numerous specialists, and had his eyes dialated more times than I can remember.

In the past year, we have made 2 or 3 trips specifically to find more detailed answers in regards to his vision.

This last trip was one that we hoped would bring results, but I hardly dared to hope we would receive a really helpful answer.

Yesterday, however, I received a phone call from the pediatric opthamologist and he discussed the findings from Thomas' ERG...(can I just say thank you to a doctor who discussed the findings with me over the phone rather than expecting me to make the 5 hour drive back to Albuquerque for a 5 minutes discussion of the findings?!!).

The ERG showed that Thomas' cones in his eyes do not work appropriately.

In fact, Thomas has was is called "Cone Dystrophy"



Here's a little information that I found on the internet:

Cone dystrophy is a term used to describe a group
of disorders that affect cone cells in the retina. This
decreased function of cone cells can lead to decreased
central vision, reduced color vision, and often sensitivity
to bright lights.

People with cone dystrophy typically have trouble with
color vision, or in some cases..., do not
see color at all. A person who does not see color may
not even have a concept of what color is, as everything is
seen in shades of gray.

Although patients are concerned about going completely
blind from the condition, this is actually uncommon
for people with cone dystrophy. It is more likely that a
patient may be considered “legally blind.” This is defined
as having best corrected vision equal to or worse than
20/200 in both eyes (which cannot be corrected with
glasses).

(from: Understanding Cone Dystrophy, University of Michigan, Kellogg Eye Center Brochure)



So, in trying to wrap my mind around what this really means, I've come to a few conclusions:

The only sadness and loss I feel at this point is the realization that Thomas' eyes can't be "fixed".

I know part of my heart wanted to feel that I had done all I could to make sure my son could see as well as possible.

I now know that there is no surgery, no "better" doctor, and no different pair of glasses that will "fix" Thomas' vision.

I can pray for a miracle, but I fully realize that a miracle does not necessarily mean perfect vision for my son in this life.

A miracle may simply be that the right people are brought into his life in order that he may learn to function as well as possible with the limitations the Lord has allowed him to have.

We are here on this earth to learn...about ourselves, and how willing we are to follow the Lord and His plan.

Despite the road bumps, and new subjects that are thrown our way for us to learn, ultimately, the Lord wants us to show our faithfulness by continuing to turn to Him.



As I start down a more clearly defined path in regards to my son Thomas, I pray that I may be a willing student and turn to the Lord when I am the one who cannot see.

6 comments:

  1. What a heart-wrenching thing for a parent and child - and what a wonderful way to see your way through. I love how you realize that a miracle may mean having the best people come into your son' life. Thank you for this tender look into your family.

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  2. Great insight, Kristine. I love the analogy comparing physical sight and spiritual sight. Just as you feel blessed to have your son, your son is blessed to have such caring and devoted parents. Thanks for the lesson on Cone Dystrophy. I never learn anything but that I find I am given the opportunity to use it. God bless you dear Sister.

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  3. Yes, miracles are pesky things at times since we cannot always understand why a cure isn't the best miracle. Living with something yourself is much eaiser than seeing a child struggle. But don't lose hope. The cure miracle could still be yours to cherish.

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  4. Your Thomas may not see in vibrant colors, but his smile is vibrantly hued. What a doll!

    I think the best lessons a dearly bought, and your family will learn things through this experience that we will never know. How wonderful that you have the gift of writing to teach us second hand. You've already begun with this posting. Well done.

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  5. Losing one's sight is a disappointing experience, even when it's only partially so. But I've heard that deafness is much harder. I wonder how Helen Keller could have had any happiness when she completely
    lost both.

    I remember the 'good old days' when I had 20/20 vision and could 'hear a pin drop'. Now I can't read even the large traffic signs until I'm almost right on them, and faces a few rows back in church lose their individuality. My eye doctor says glasses won't help. People, especially teenagers, can carry on conversations right by me, and I don't eavesdrop because I can't discern any meaning in their mumbles, even when my hearing aids happen to be turned up high. I only guess at the content of responses in Sunday School or Relief Society. I do have a thingamajig that pipes the sound from the microphone straight into my ears, and that helps a lot. In conversation, if people want me to understand, they speak directly and clearly to me. Otherwise, we ignore each other.

    Has the quality of my life completely disintegrated? Hardly. It's just different. My disfunctions are even interesting. I'm still happy.

    Oh, and I discovered that some food, like blueberries, for instance, and food supplements especially for eyes really do help my sight. It surprised me. When I take them, I I can (especially early in the day when my eyes are rested) read even fine print without magnifiers.

    My sister-in-law who is an herbalist, says that sometimes when a baby is born the neck bones get out of line. Doctors don't check for this, but it can pinch the 'pipeline' to the eyes or ears, etc. Usually it doesn't show up for years, but chiropractors have been known to help immensely.

    I've also discovered that sometimes it's those with the most to overcome that are the happiest. That's probably because happiness is a matter of choice, not circumstance.

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  6. Hi I have cone distrophy and I recently found out that I would be able to at least take a drivers test, I have had vision problems since i was about 2 but I'm 14 and i just found out this year that I have cone distrophy.

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