Institutions and Frog Legs...

I want to start off with a bible verse that I was sent today. It really spoke to me as I began to think about what a disability is. 


“Now you are the body of Christ, and each one of you is a part of it.” 1 Corinthians 12:27


Today was my first day home alone with the kids since Khloe was diagnosed. I liked it. in fact, i loved it.  i enjoy chris being with me, because he obviously understands me, but there was comfort in the silence. today, i sat by myself and thought about people, not just with CP, but with all different forms of "disabilities". God has put me in contact with amazing people.  most of you know, i have an uncle who passed away when i was 8 from cystic fibrosis. he was 26 years old, little unlce jay. my uncle was a little guy, but mighty. mighty in every sense of the word. he faced the world with passion,bravery,humor, joy and love. chris and i have spent the last 2 years trying to do our part to help raise awareness and money for '21 roses'  which is a foundation for children with CF. this has allowed me to connect with great people via the internet. I also was contacted recently by someone who i knew in high school , and in the past 2 days she has touched my heart and soul more than some people that i have known my whole life. She too has a journey ahead, as her son who is about the same age as khloe has down syndrome. i admire her, and hope that one day, i too will be strong like her and her husband. they tell a beautiful story.I have another friend who holds a very special place in my heart, her daughter was just diagnosed as profoundly deaf. She too is my age, and knows my pain and struggles. She and her family have a journey ahead too, as they learn new and exciting ways to communicate. She inspires me to want to learn more. She always has words of wisdom and knows how to heal my heart in moments when i really need it. when i was pregnant, my cousin tiffany got me started on babycenter.com, i have used their support groups when i first had a DX of a  subchroionic hemorrhage in m uterus- tiffany aimed me back there (as did some others) when i found out about Khloe. I have met wonderful wonderful mothers, all with the same feelings i have.  I thought about all of these people today. What a wonderful gift to be surrounded by, differences. We often think of differences as things we shouldn't focus on. We should just look past them. our parents teach us not to stare at people that are "different" because you may make them feel different. so when we walk into a store and see someone in a wheelchair or someone who may be using sign language, or an autistic person who is yelling or panicked, we look the other way. out of sight out of mind, right? wrong.  Why dont we stare at the beauty? if a person who you found visually  attractive to you walked by...would you stare? would you care then, if it made that person feel different? Why does it become so hard to look or talk about differences? In researching some things today i found how far we have come when viewing people who are disabled. A few years ago, most people born with impairments had to live in institutions. An institution is like a big hospital. Some of these institutions were very bad places, and the people who lived there were treated more like animals than like people. Other institutions were nicer, but even so, living away from home was very difficult for special-needs children. They couldn’t stay with their own families or have their own bedrooms. The only people they lived with were other people with impairments and the nurses who took care of them. Would you like to live that way?

How silly it would be if we decided that every person with glasses or contact lenses had to move into a big building together. They would have to sleep in large rooms with many beds. They would have to eat at long tables, and could not choose what they would eat. They could leave only for weekends, and only if a relative would come to take them out. You people who are wearing contacts and glasses would be very upset, I’m sure, especially if you were forced to go. That must be how people with impairments felt when they were put in institutions.

Thankfully, there are not many of these institutions left. God intends for us to live together in our families and communities, without separating anyone who is different. God has led us to understand that we all need each other. Special-needs people help us to see God’s work, to increase our faith, to have hearts of compassion, and to praise God. Why would we want to separate these people from us? I feel so blessed to have learned this. I am extra blessed that my child does not have to live that way, I pray for those who still do, and grieve for the ones that have.

In all of my thought today, I have finally read Khloe's DX. I have read her eval summery and all those fabulous (sarcasm) things they had to say about little Khloe. I think, how can you look at my baby and see so many things wrong. I get it...they are medical professionals, and reports are not geared for emotion but for information. I understand they are written in a way that fully describes her inabilities so we can focus on them...but jeesh could you not say one thing to make a mother smile?  In conclusion they determined that she has 'frog legs' which gave me a good laugh.  frog legs? this woman is very lucky that i happen to like amphibians. i have no idea why of all things frog legs stuck out... so when i read 1 Corinthians 12:27 i have decided that khloe is the frog leg part of the body of christ. i guess there are worse legs to have....after all she could have mine.