Making Ella's Wish...: Make-A-Wish...: "We found out last week that Ella has been chosen by the 'Make-A-Wish' foundation of Nebraska to be the recipiant of a 'wish'. I had mixed fe..."
Monday, August 8, 2011
Make-A-Wish...
We found out last week that Ella has been chosen by the "Make-A-Wish" foundation of Nebraska to be the recipiant of a 'wish". I had mixed feelings about this. My initial feeling was deep sadness. Sadness that I am the mother to a child whose condition qualifies her for this status. Make-A-Wish kids are sick, some are dying, they have cancer. They have Rett Syndrome. Every reminder of how gravely disabled Ella really is is as if a scab is torn off a wound again. I then started to think about the good that this wish could do for our family. For Ella. And I hope, for others who may also seek this gift for their child because of our story. When I spoke to the woman representing "Make-A-Wish" of Nebraska, we set up a date to meet and she encouraged me to (between now and then) discuss with Ella what she would like for her wish. Now that would be no small feat! Appherantly she doesnt know alot about Ella (yet). Since Ella can't talk to tell me what her wish would be, we will have to choose one for her. I had a few that would be absolutely perfect! #1-A cure for Rett Syndrome, #2-No children suffering from any diseases ever, #3-The ability to cure any type of disease with the wave of my hand from here on out...(she did say to have 3 in case the first or second didn't work out...she did say to dream big!)
OK- back to reality.
Of course those would be wonderful wishes but even the Make-A-Wish foundation can't grant those.
So I talked to the family about what they thought Ella should "wish' for. Almost immediately they decided that a trip to Disney World for the whole family would be an amazing "wish". I have to admit, I agreed with them-(in that it would be amazing)! Ultimately though, that would be a week of extra happiness and joy for Ella. I wanted to make the most of her wish, I wanted long term joy from this wish. In other words, I didn't want to screw this choice up!
Since Ella was a baby and we first began to notice that something wasn't "right" with her, we have been making adaptations to her environment so that she could participate in her play, have some control, be the one making something happen. We tied toys to a wooden chair leg so that they hung centimeters from her fingers and she could "play" with them. We took apart and reassembled a baby walker so she could make it move, we made her toys out of paper, out of empty butter dishes out of anything we could find or think of that enabled her to play with them despite her limited hand and limb movements. Appherantly I was a lady ahead of my time because when Ella started working with profesional therapists, these are exactly the things that they did (or had) to use as theraputic devices for Ella! As she grew, these devices grew also in complexity and cost! There are some things that Ella uses at her therapy center. One is a huge bubble tube that turns on when Ella presses a large button, another is a fiber-optic device that lights up with many many colored lights that makes Ella giggle and stare when it is turned on. There are lots of other things too that are made for special children like Ella. Things that are adapted for her to play with them, activate them, move them. In addition to causing Ella's limited mobility, Rett Syndrome comes with severe autism. That means that Ella often needs a place to hide from the things in the world that are just too much for her fragile little nervous system. She needs a place to gather her thoughts, relax, rest. Things that we know that she loves (based on her reactions to them) are music, cartoon images, water, soft lights, bubbles. Bearing this in mind. I chose Ella's wish. I hope that you will think I chose wisely Ella. Trust me, (and you can ask those around me!) I thought about it long and hard! I wanted to make sure I chose wisely, and chose something she could enjoy for a long time. The wish is to turn her room into a sensory room, full of light and music and soothing sounds, and some of those things that Ella can do too, so she can have some control in her life. Ella's sisters were a little mad at first (about sacrificing the Disney trip for the sensory room) but they too agree that it is a much better and long term wish.
I am trying so hard to open up Ella's little world...one idea, one modified toy, one toy tied to a chair, one wish at a time...
Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."
OK- back to reality.
Of course those would be wonderful wishes but even the Make-A-Wish foundation can't grant those.
So I talked to the family about what they thought Ella should "wish' for. Almost immediately they decided that a trip to Disney World for the whole family would be an amazing "wish". I have to admit, I agreed with them-(in that it would be amazing)! Ultimately though, that would be a week of extra happiness and joy for Ella. I wanted to make the most of her wish, I wanted long term joy from this wish. In other words, I didn't want to screw this choice up!
Since Ella was a baby and we first began to notice that something wasn't "right" with her, we have been making adaptations to her environment so that she could participate in her play, have some control, be the one making something happen. We tied toys to a wooden chair leg so that they hung centimeters from her fingers and she could "play" with them. We took apart and reassembled a baby walker so she could make it move, we made her toys out of paper, out of empty butter dishes out of anything we could find or think of that enabled her to play with them despite her limited hand and limb movements. Appherantly I was a lady ahead of my time because when Ella started working with profesional therapists, these are exactly the things that they did (or had) to use as theraputic devices for Ella! As she grew, these devices grew also in complexity and cost! There are some things that Ella uses at her therapy center. One is a huge bubble tube that turns on when Ella presses a large button, another is a fiber-optic device that lights up with many many colored lights that makes Ella giggle and stare when it is turned on. There are lots of other things too that are made for special children like Ella. Things that are adapted for her to play with them, activate them, move them. In addition to causing Ella's limited mobility, Rett Syndrome comes with severe autism. That means that Ella often needs a place to hide from the things in the world that are just too much for her fragile little nervous system. She needs a place to gather her thoughts, relax, rest. Things that we know that she loves (based on her reactions to them) are music, cartoon images, water, soft lights, bubbles. Bearing this in mind. I chose Ella's wish. I hope that you will think I chose wisely Ella. Trust me, (and you can ask those around me!) I thought about it long and hard! I wanted to make sure I chose wisely, and chose something she could enjoy for a long time. The wish is to turn her room into a sensory room, full of light and music and soothing sounds, and some of those things that Ella can do too, so she can have some control in her life. Ella's sisters were a little mad at first (about sacrificing the Disney trip for the sensory room) but they too agree that it is a much better and long term wish.
I am trying so hard to open up Ella's little world...one idea, one modified toy, one toy tied to a chair, one wish at a time...
Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."
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