And for quite a few years CF took over our dreams, thoughts and hopes for our family. We are now on the other side of that, we have learned to live with this disease, we know what to watch for and how to handle it. Getting through this has happened in our own home and controlled environments where we can for the most part dictate what goes on.
As the years have passed Ayla's future is always in the forefront's of our minds. The first of many tough decisions is upon us and we have limped toward a decision..She is turning 4 next week and is eligible for VPK (a program in the state of FL where pre-kindergarten is paid for).
In the past I thought homeschooling might work for Ayla...it would be the best of both worlds for CF and for learning...But as I marinated on that thought I couldn't get peace with it. I have such a social little girl on my hands...whom I don't want to ever have to tell......
" I chose ___________________ because you have C.F."
I don't want her illness to define her, or have her life filled with choices and options that were tailored to C.F. I want her to do things that everyone else said she couldn't, I want her to build lasting relationships with people who support her and lift her up while she is hurting.
So with all that said....we have decided to visit some schools this week, VPK certificates are going to be issued next week and the mass public will be out choosing the place for their kids and I need to have my options available.
I have one in mind that I think may be "it"- when I called the school today the director said she too takes digestive enzymes and that seemed like a glimmer of hope that I'm moving in the right direction. This program is 5 days a week from 830-12 (EEK!) I am so nervous about actually signing the forms, this is such a huge decision.
My fears are many but mostly about her becoming ill from getting the usual "bugs" that every child gets when first put into a program. About those "bugs" turning into something else and causing lung problems that until thus far and been non-existent. And the fear of the guilt that these repercussions could have on me.
I have to make a decision either to make all choices BECAUSE of CF or in SPITE of CF....
So prayers are appreciated as we make this transition and for Ayla that she adjusts and enjoys this experience abundantly...
I will follow up with the school of our choosing and my list of "likes" about it.....
~krista
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You and Larry will make the right choice! The Holy Spirit is directing you. Relax and follow Him...I love you!
ReplyDeleteMom
This is a difficult decision. I am praying for you but I think you are doing the right thing
ReplyDeletethank you!!!
ReplyDeleteWhat a great post! I sure do know what it feels like always wondering if what I'm doing is right for Drew and for my family. Trying to live a "normal" life for Ayla and your family is all that you can do. Thanks for sharing your thoughts. And good luck with your search!
ReplyDeleteThis really hit home as my oldest CFer will turn 4 in September and we are thinking of preschool for him. We too never thought we would consider that as an option once we learned of his diagnosis. We kept his older brother out of preschool b/c of Alex having CF and also b/c he wasn't ready socially we felt. I explored all kinds of homeschooling avenues but I too decided that I would rather try for the most normal lifestyle for my kids and then alter that plan if I had to. That way I could at least say "I tried." Alex is so incredibly social just like Ayla (and unlike my older child at this age) and it would just be unfair to keep him out of school. He sees his brother go and loves to wear a backpack and pretend he's going to school. (We call his speech therapy "school" sometimes to make him feel better) I don't know how I'm going to deal with it when the time comes but I know it's something I have to do for him. I hope you guys find a place you are very comfortable with and that Ayla thrives in!
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