Tuesday, May 25, 2010

Its Not Fair

Yesterday Finley's VI teacher, Gail, came to the house for a visit. She visits Finley twice a month right now - and usually at the school. But every once in awhile she comes to the house so that we can talk as well. And she always has a present - or 6 - for Finley when she arrives. They are all vision/braille related, but so fun. She brings her toys and books and paper, and goodies. Finley loves Gail. Not just for the presents, but that helps. Gail is an amazing teacher. This will be Finley's last year with her - Gail only works with preschool age children. We will really miss her.

When Gail comes to the house, and brings Finley presents (this time included a harmonica. Thanks for that) Arlington gets a little jealous. Even though she can play with anything that comes, she knows it is for Finley. Arlington will said "its not fair". She is just being 7. It is hard to watch a sibling get a present just because.

We have tried to talk to Arlington about what is going on with Finley. We understand how it may not seem fair. But what Finley has to deal with is certainly not fair. It is hard to explain to Arlington how what Finley has is certainly less fair.

So much about it is not fair. It isn't fair that she will never see the world as it was meant to be seen without an intervention from science. It is not fair that it is progressive and we don't know what the loss will be, or when it will happen. Just that it will happen.

The thing about a progressive disorder – as soon as you get comfortable with the stage you are at, it progresses again. And then we say to ourselves – if it doesn’t get any worse than this, we would be okay with that.

We know that where it stands now, there is no treatment and no cure. That more loss is headed her way. It is hard to think of her future being more limited than a “normal” child’s future. You just want your children to grow up and have every opportunity that can be afforded to them. And to think that this disease will rob her of so much is heart breaking.

So we will continue to fight. And we make life as normal as possible for her. We push her just as hard as Arlington and Cainan. To make her strong and independent. That is not easy to do with Finley. Being the baby of the family is a role she was BORN to do. (ha ha - get it?)


In other news - we are having a great visit with Aunt Betty. She has been spending her days with the littles and enjoying the beautiful weather. We love when she visits. We have a lot of fun. I am glad she is here with us for this week.

Arlington had her last Daisy meeting today. Yahoo. She won't be doing Brownies next year because right now they don't have a leader. In a lot of ways it is unfortunate because I do think that Girl Scouts is a wonderful organization. But what can you do.

I found out today that I am the staff member of the year in my district. I was pretty surprised by this news. We have a staff member of the year and a teacher of the year. So next week there will be a little ceremony in front of the Board, and stuff going on at my own school, and then we will get an award at convocation next year when school starts. I was completely humbled by this. It makes me feel good that I am appreciated like this!!

I will see you on Saturday. Enjoy the rest of the week! Summer is right around the corner.

Friendship is born at the moment :”What? You Too? I thought I was the only one” - C.S. Lewis

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