Another weekend is almost upon us, and with it comes another series of events that I will hurriedly try to get done over the next two days. The more tasks that I can get checked off my list in advance of the weekend, the better. They always seem to come around very slowly and disappear too quickly. It is just the cycle. I know the reason, we enjoy them. When we like something, we want it to last longer. A basic concept.
This one shall differ for me more than most recent ones, because I plan on spending one of the days (Saturday) with a very incredible critically ill special needs disabled boy. He is my son. At thirteen, his simple needs are met by his momma and me. When he smiles we know he is content, pretty easy.
He will awake early on Saturday as he always does and make a few small growling noises to let me know that he could use a diaper change, his juice cup and his I pad. Again ,simple needs. If I take my time, he still won’t fuss cry or even worry about it. He never does, he will simply growl a bit again later on and see if it has an effect on motivating me to get out of bed and attend to his needs that time.
I always roll myself out of bed early and take care of him as timely as possible. I wouldn’t want to sit in a wet diaper either. For him it isn’t ever enough reason to make a big deal, he simply goes with it. After all of the adversity that he has faced in his young life, a wet diaper is the least of things worthy of a few tears. But then again, he never cries. He is a fighter.
When Saturday comes, he won’t have any idea what the plan is for it or what I have in store for the two of us. To him, it will simply start as another one with routine events almost predictable to a fault. It will begin in the same manner as I mentioned, followed by a series of liquid medication administered through the feeding tube in his belly. The colors will mix together in the syringe before slowing heading into his body to perform their life saving miracles for another day. He will sit there with his pad on his lap and watch his favorite video shorts over and over again, without a care that a feeding tube is sticking out of his body.
He is amazing with that pad, because for a child that is non-verbal, his fingers can move a mile a minute. Carefully he swipes left and then right, tapping along the way and then stopping briefly to watch the video short that he had so carefully been trying to make appear. There are occasions that I have seen him play the same video over and over and over again. I can also say, there may have come a time or two when I walked in and turned the sound down when that happened. He bothers no one and simply watches Elmo and friends.
Typically , he will not willingly volunteer that thing to be taken away from him, but there are a couple of circumstances that it allowed. When it is time to go to sleep, and when it is time to go for a ride in the car. He loves to ride in the car, absolutely loves it.
He won’t make a sound as we drive to our destination that morning, he will simply sit alongside me, and look out the window. There will be no “are we there yet” phrases spoken by him. Truthfully, I would welcome that – but it will never happen. Nor will I ever be fortunate to hear the words “daddy I love you” spoken from his tiny mouth. Time will pass as we head to our destination. I could take thirty minutes or three hours nothing will change in the car on that drive.
Periodically I will say to him, “do you want sing a song”? Typically, his gesture to me will be such that I can interpret it as being his way of responding “yes, you bet I would like to”. Of course, when I ask him that question, it really is asking him if he want for ME to sing him a song. When I pick the right one which seems to trigger his reaction, he will grab my hand and shake it with his, as I sing.
Happiness is so easy, a ten second series of words and his needs are then met again. Such a wonderful little boy, not asking for much but a little love in return for what he can offer back to me.
As my car eventually drives down the large hill very close to our final destination, off in the distance he will recognize something familiar and begin to bob up and down a little bit in his seat with excitement. I shall have waited for an hour and forty minutes to see this reaction with him, but as it occurs it is absolutely worth it. This will have been our fourth trip here over the course of the summer months. It is a tremendous amount of work to make happen, but it needs to. It needs to happen with frequency.
Most of the time, if he is in a car for that amount of minutes it is on a trip back to the hospital with his momma. There he will be stuck with needles, probed and taken to a place that is entirely the opposite of where he and I will be arriving to this Saturday. This is “his” place, I tell everyone that. It is his special place that allows him to simply experience “joy”. For all that he has gone through in his young life, that particular emotion is foreign to him most of the time. This Saturday, it won’t be. Christmas will come early, again.