Another weekend is almost upon us, and with it comes another series of events that I will hurriedly try to get accomplished over the next two days. The more tasks I can get checked off my list in advance of the weekend, the better. Weekends 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 to have come and gone. I plan on spending one of the days (Saturday) with a very incredibly critically ill, special needs, disabled little boy. He is my son, named Kaden. At thirteen, his simple needs are met by his momma and me. When he smiles we know he is content, pretty rewarding.
Kaden will awake early on Saturday as he always does, and then make a few small growling noises to let me know he could use a diaper change, his juice cup and his I pad. Again, simple needs. If I take my time, he 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 at 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. If he cries twice a year, it is a rarity.
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. It will simply start as another weekend 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 care, as a feeding tube is sticking out of his body.
He is amazing with the Ipad because for a child who is nonverbal, 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 he had so carefully been trying to make appear. There are occasions 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 it happened. He bothers no one while simply watching Elmo and friends.
Typically, he will not willingly volunteer it to be taken away from him. But, there are a couple of circumstances when it is allowed. Only 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, so for him to abandon the music for a ride in the front seat is a no-brainer.
He won’t make a sound as we drive to our destination, 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 it, but it will never happen. Nor will I ever be fortunate to ever hear the words “daddy I love you” spoken from his tiny mouth. Time will pass along quietly as we head to our destination. It could take thirty minutes or three hours, nothing will change in the car during the drive.
Periodically I will say to him, “do you want to 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 the question, it really is me asking him if he wants 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 joyfully, as I sing off-key.
Happiness is so easy for Kaden to achieve. 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. It cannot even be measured. Every day with him is a gift. I know each one is going to special for some new reason.
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. When 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 because he deserves each and every smile.
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 entirely the opposite of where he and I will be arriving at this Saturday.
This is “his” place, I tell everyone that. It is his special place that allows him to simply experience pure innocent joy. For all he has gone through in his young life, it is particular emotion foreign to him most of the time. This Saturday, it won’t be.
Christmas will come early, again.