Tuesday, May 19

Time to Play Catch Up

I haven't been on here for a while and several things happened while I was away...

I went to this awesome event organized by our region. They took the kids and did role playing with them and taught them a play while the parents cooked with blinded goggles. I chose the pair of goggles that were most like what Rebecca's sight will be in the future. Her VI was there at the event so he helped me choose the right one. It was really difficult to see, I had one pinhole where I could see clearly if I squinted really hard. I had some light from the bottom but not a lot of clear vision from it. My left eye was completely covered.

We made pudding first. Sounds easy, right? WRONG. I had to measure milk, put the powder in the bowl and then mix it. I figured out how to use my hands to measure the milk and found where the bowl was, the hardest part was knowing when it was all mixed. I am so used to using my eyes to know that it is complete so I probably over-mixed it. Next we crushed OREOs. I didn't even use my eyes for this. They were worn out from the pudding, so I closed my eyes and felt my way through the OREO portion. Next we added gummy worms to our cups of pudding and OREOs. The organizers really helped us with this. After we added the worms and the crushed OREOs, we were told to add a spoon. This really helped me be able to feel around to know which cups still needed worms and OREOs.

It was a great eye-opening experience for me to experience just a moment of what my daughters life will be like. Two wonderful women came and talked with us about their experiences as blind women and we were able to ask questions about what their parents did that helped them and which things hindered them in their lives. We then ate lunch together with our children, enjoyed the desserts that we made and then the children performed for us (goggles were off by then).

We have also went to the Retinal Foundation Of The Southwest recently to check Rebecca's eyesight against what it was 4 years ago. We had a great interpreter at the appointment that actually grew up with a family that had 3 children with Usher Syndrome. I love how God places the right people in our lives! They did hours of testing and it was very difficult for Rebecca but I also believe it was very important for us to know the results. The nurse has called us and said that they found an extra mutation in Rebecca's Usher Syndrome called CI mutation. They would like to talk with us about doing a clinical trial. They explained to me that this is very rare and want us to come back this week to give blood and discuss it further with us.

Rebecca is making amazing progress in her language skills and will be going to the Texas School for the Deaf this summer for 3 weeks! We will be staying with her for 3 days and then she will be there for the rest of the time without us. This will be very hard for our family to leave her there but summers are terribly difficult for her since we do not have a lot of Deaf children in our city.

I am also studying to get my interpreters certification so that I can work as an interpreter at Rebecca's school. This would allow me to be home more for my children and have off Christmas, Spring, Fall & Summer breaks. Please pray for me as I study. I have only been signing for a year and a half, but everyone keeps telling me that I am ready. I wish I was as sure of it as they are.


Dianrez said...

Wishing you were ready goes along with my wishing my childhood family were like yours today...there's only one way to go and that is to try!

Experience brings the best part of your readiness anyway...kudos and just know you'll be fine!

Anonymous said...

It is always a joy to hear from you, no matter what you have to say. You and your family are on an incredible journey -- together. Inspirational. Have fun with your interpreting program.

I don't mean to be nosy, but is Braille also on the list of things to learn to provide access to text?

Mother of Bilingual Deaf and Hearing Children

Candice said...

Her VI has instructed us that since Rebecca's central vision is still good there is no need to learn braile right now. She would still depend on her eyes. There is so many other things that we are focusing on right now, we decided not to add braile until it was needed or until we had extra time :) I am not sure the extra time thing will ever happen.

Dianrez said...

Not being an expert in the field, I would think learning Braille before it is needed is a good idea.

I learned it in high school as a lark and to correspond with a penpal at the School for the Blind for practice. It has been a long time since using it, but I still remember the basics and can figure out the content of Braille text seen here and there.

Pray that it will never be needed, but nice to have in place if it does.