One of the fun things about my son, Monkey, is that he loves to be sly. I am thoroughly convinced it is his driving force in life. My youngest son, Mater, is always awesome support. For an 11 year old boy he is always on point watching out for his big brother. Amazing kid all around. However, today Monkey was victorious over both of us. He had his day in the sun– or rain rather.
He figured out that he can slide his screen open. His screen that leads to our highly secured fenced in back yard. Clayton and I (one of us always between Monkey and the exits) were watching a horrible science fiction show, because that’s our thing–bad TV series that try too hard. When lo and behold we here Monkey using one of his screeches of sorts that he makes when he is really excited. The problem was that it was just too far away to make sense. Monkey is in his room, but how therefore, could this sound that usually echos through the house sound so very far away? Is it a doppelganger—could there be 2 of him??? Nope. It was the distant sound of victory as I get to his door and look through his bedroom window only to see him jumping in the rain. His face pointed straight to the heavens and excitement radiated despite the gloom of the rain.
The day was long. Monkey hadn’t managed to want to listen to anything I said all day. Constant up and down despite my firm and consistent effort to not cave to his every demand. From the fridge to the sidewalk out front, Monkey, was not taking no for an answer today. If he wanted it then we were gonna do it and/or we were going to take a twenty minute break to throw a tantrum— Long day.
To add to the rain dance and new escape plans I had the new chore of bracing the screen so it doesn’t slide open (no big effort) and then I had the glorious task of cleaning grass clippings from Monkey and pretty much all of my furniture (as I mowed the lawn just yesterday). You can’t help but laugh. You really can’t. That doesn’t mean that I don’t have frustrations throughout the day, or that I don’t find myself thinking this is simply too much for one person at times. What I do when the day is rough is wait for that moment I see him chuckling in the rain, as it were today anyhow.
When you have a child that is so capable yet so severely disabled you end up with someone that is able to get around quite well, but can’t keep themselves safe. As a result you gain a lot of stress and worry. That stress needs a goal in my opinion. Something you can look forward to when the day gets long, and the Monkey has done nothing but make you work so it can turn around and throw poop in your face (not literally–that’d be gross). He worked me today. Like a dog. But I’d do the whole day over to see the joy in his smile as the rain hit his face. Always live through the stress to get the reward. It’ll come every time.
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