Wednesday, October 06, 2010

Taking Baby Steps

That is how we are approaching how we communicate to Katie about her eye condition. I have consulted with a therapist that specializes in children and she has proved to be a valuable resource for us. Slow and steady will win the race.

It will be much like the adoption conversation; give bits of info and wait for further questioning. Only give her what she asks for and above all, do not answer any questions that we are not able to answer pretty quickly. Our answer to questions like those should be, "I really want to think about what you have asked me before I answer you...Let me go ahead and do that and then we will talk about it further. I promise I will give you the answer soon." Of course, we will answer the question as quickly as possible and when we are fully prepared to do so.

Our fear is that someone will spill the beans to her in a totally inappropriate way but the counselor make me realize that the odds of this are quite small considering she is very young and she is supervised by us most of the time outside of school. There is no real reason to give her the whole story now and terrify her unnecessarily. She is only 5 years old and is too young to be able to process this information properly. If this was going to happen overnight, then yes, we would need to prepare her immediately. As far as we know, Katie's eyesight will wane away slowly, giving us a great deal of time to prepare her.

The first bit of communication will be about the Vision Walk that we are participating in on 10/23. There will be a team of people and she will want to know why they are all there and of course since we are "The Katie Starr Team," it will quite obviously be about her. With the therapist's direction, we have decided to tell her the truth in a dose that she can digest. We will tell her that we are walking and collecting money to aid researchers to help people like her that have weak eyesight. We are hoping that the research scientists can find a cure so that her eyes and many other peoples eyes can be stronger. She knows that he eyes are weak so that is perfect.

In one of our sessions the therapist met Katie and was quite taken with her intelligence and openness. After interacting with her she assured me that if handled properly, Katie Starr will be able to cope with it and thrive despite it. I believe in my heart that she is right.

Another good piece of advice that she gave me was to try to enhance her other senses so that she can compensate as her sight weakens. Also to draw Ethan into it as well so that she does not feel singled out and of course him feel left out. We need to ask them to give us feedback on taste, smells, sounds etc. in order that they are challenging those senses. We will train them to more fully experience what is presented to us...not just "see" with our eyes. We can "see" with our ears, nose, mouth and touch. She has given me several exercises to do in order to accomplish this.

I feel that we are taking positive steps. Our next step is to meet with another specialist in a couple of weeks to get a better idea about timelines and things we can do in the interim to help her preserve her sight as long as possible.

Baby steps are doable. It was that slow old tortoise that won the race against the speedy hare. Taking it slowly will help us to prevail in the end as well.


Candy said...

I know you will make sure that Katie is well prepared for what may come. She is very fortunate to have two loving, wonderful parents that will make sure that the transition goes smoothly. You know that I'm here for you.

Suz said...

You have my heart. I know that you and your family will make this work for Katie Starr, but all I want to do right now is take it away from her. You are an incredible mother and an incredible woman. I think of you often as the days go by and hold you in the light of your journey.
love to you all,

dawn said...

No Mother could do more than you are! Or Daddy either. My grandpa had the most amazing hearing and touch capabilities. I used to love to watch him touching things even as a wee little girl.

FYI....miss Lil has been told that she cannot utter even one tiny little word to "The Starr" when she see's her, regarding her diagnosis. She understands so I know she is going to be SILENT.
love you.

PletcherFamily said...

I stumbled across your blog on BlogHer. I left a comment there, but wanted to here as well. :)

Our daughter, who is 4, has been diagnosed with Lebers Congenital Amaurosis. (LCA) This is a retinal degneration as well. It is cone/rod, like your Katie. Our daughter was just diagnosed in 2009.

We LOVE FFB. They are an amazing orgnanization. Before we made our own FUND, we raised money for FFB. We will always support them. They have given millions for retina research.

Our daughter will go totally blind as well without a cure. You are taking a HUGE step with being active! Kudos to you!

We have a blog, a website, and our Fund's sight - I would love to keep in touch. We know what you are going through and are here for you!

PS - we have two the same age as well - we adopted a little boy from China (my two daughters are bio), and he and Finley are only 30 days apart! They are both 4. :)

Tammie said...

You are doing everything you can to make this journey as easy as possible for Katie Starr. I can only imagine the stress this places upon you & Marc. If you need to talk or vent or laugh, I'm here for you.

BTW, Erin has been told to keep her mouth shut around Katie Starr.