My Family

My Family

Friday, March 28, 2008


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 what 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" his 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, I pray that I may be a willing student and turn to the Lord when I am the one who cannot see.


kodiak73 said...

I'm sorry you didn't get a better prognosis but at least you have a better understanding of his challenges and can plot some kind of path forward. We will keep you and Tiny in our prayers.

Kari said...

What a beautiful post from your perspective! I hope Tiny will have some miracle, but if not I'm sure it is to give him the strength he will need.

takemetohawaii said...

Even though it's not something that can be fixed, I'm sure it's good to know what the problem is and you can move forward helping him. You have a great perspective! Hugs!