Sunday, January 17, 2016

Can't

Yesterday Jillian experienced the first time where she can not do something because of her special needs. At this point this is not common in Jillian's world as we try to adapt as many things as we can for her and with her only being 3, a lot of what she wants to do is within her realm or she does not realize that she can't do it (she thinks she jumps, her feet don't leave the floor, but in her mind she jumps like everyone else)
Now there are things that just the nature of being 3 she can't do. She is not allowed to be in the kitchen when I open the oven. She is not allowed to walk in parking lots by herself (actually she is still almost always in her stroller or carried in parking lots). We don't let her play in the bath without someone watching her... but those are all common things 3 years olds can't do. Yes sometimes that makes her really mad (mainly the not being in the kitchen while I open the oven because she like to make storage container towers while I cook) but they are things I would not let any 3 year old do, disability or not.
Yesterday was the first time she was laying on the floor crying because of something her disability keeps her from. Someone had given her a pair of shoes a while back that are sparkly but don't work with her orthodics. Just the shape of the sparkly shoe in general will not work for Jillian. They had originally been put in the bin with all of her shoes downstairs but as I was cleaning stuff out the other day I decided that it was silly to keep these shoes that she could not wear in with the rest of her shoes so I put them on the stairs to put into storage since we don't know if we are having a boy or girl yet and maybe our next child will be able to wear them. Really I did not think much about it. Jillian needs really specific shoes, she also needs clothes that work with her tube, its not the first time I came across clothing that does not quite fit her needs, it just is what it is. Most of the time however I put these things away (or don't buy them) without Jillian ever noticing them.
As we were getting ready yesterday Jillian noticed these shiny shoes sitting on the stairs and wanted them on. I explained to her that they would not work with her orthodics and that we love how much her orthodics help her feet. The tears started to flow and flow about how she loved these shoes and wanted to wear them. Honestly it broke my heart a little, not because my child needs to have all of her wants, but because I was telling her she could not do something because of her disability and it was the first time it was emotionally hitting her. It was the first time she was noticing.
There are going to be things in her life that oxygen, feeding tube, and muscle weakness are just not going to work with. Eating food for her is a really bad plan (to her it is normal that she only "eats" meds, it does not bother her), running a marathon would be very difficult for her, the logistics of some things just don't lend themselves to her needs, however there are so many things that she CAN do.
As I was thinking about it more today I was thinking about how we all have things in our lives we can't do for one reason or another. Maybe it is physical limitations, maybe it is fear, maybe it is money, we all have things that stand in our way, and you know what, thats ok. Not everything in this world is for everyone, and that is alright. Its not the end of the world that she cant wear these shoes, just like it is not the end of the world that we wont do our gender reveal of this baby with balloons (I am deathly allergic to latex). We adjust our world and honestly we are a lot better of a person if we figure out how to go with the flow of life. If we figure out that the world is not all about us. That we are not going to be able to do everything in the world and that is ok... it is just our job to do all that we can with the life we are given, and that is really hard to do if all we ever look at is the things we cant do and forget all of the wonderful opportunities that we are given each and every day, no matter our ability.  

 

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