Recently, I have had a few people ask for an update on Joel. He is doing well. He is not who he was before surgery, but he is still my Joel. It is so hard, he was 4 1/2 before the cancer was discovered… what would Joel have been like at 6 if he had not had cancer? Really I think it is impossible to say. I have found myself wishing Joel had, had a different type of cancer somewhere else in his body not in his brain. It has affected so many things for Joel. This is where I struggle with answering the question of, ” How is Joel?” I was talking to my daughter about how I needed to update as I have had people asking and was expressing some of my frustrations with progress. My too wise for eleven years old, daughter pointed at my “NOW” and said, “Now Mommy, Now!” Concentrate on NOW was her point. Don’t worry about what was or what will be. Live in the NOW.
I can’t compare Joel to anyone else, no one else has had their brain operated on exactly the same as Joel, sure their have been other Medulloblastomas removed before but not out of a brain exactly the same as Joel. He is an individual, and how he and his body have reacted to the trauma of brain surgery, radiation and chemo is not the same as anyone else.
He has really improved in so many areas, his hair is coming in nicely.
His desire to get out and get moving is almost at 100% yet he still tires easily. When you watch him walk you can see something is off but it is getting better. He has had to learn to use his left hand prior to surgery he was right handed. This is a picture he made for me today. It makes me so proud and breaks my heart at the same time.
He hasn’t lost his sense of humor one night at supper he put a piece of spaghetti across his teeth and told Elijah that he had braces too! Things are a challenge for Joel but he does not complain and he keeps trying. He can take foam letters and spell his name but getting it on paper is harder.
He looks forward to going and just loves spending time with all the horses big and small. He seems to connect with them in away that is just so effortless for him. Maybe he gets that the animals don’t pass judgement in the same way that people some times do.
Joel with his pal Odee! He is progressing well. They have 4 people helping with the lessons. One person leads the horse, there are two people on either side of him and the instructor. His instructor was saying that the handlers on either side will begin to back off a little as he is quite confident in the saddle and doing so well.
Joel grooming tiny little Bibit! You just want to bring him home and snuggle him, our St. Bernard is bigger than Bibit.
Here he is with Princess. Have I mentioned how proud I am of him.
After surgery Joel went mute. Fairly quickly he started with a word here and a word there. They explained it to me this way, the words he was using were like reflex words. When the phone rings you say, “Hello.” There is very little thought that goes into it. So words like Momma came back first. The more he has to think about something the harder it is for him to retrieve. If he feels any pressure to answer quickly it will take him twice as long because of the stress.
He has also developed selective mutism, again stress plays a role in this. He almost never speaks to medical staff. If you are new in Joel’s world it is unlikely he’ll talk to you, (there are always exceptions.) When he started at riding he would not speak. They encouraged him to talk to Odee, “Walk on.” or “Whoa.” Barely audible you would hear Joel say, “Walk on.” He is now saying hello and answering simple questions, albeit rather monotone. At home he uses all sorts of inflection in his voice.
I want Joel to be able to print his name clearly, to speak clearly, to run with ease, to be able to read. I don’t want him to deal with these ‘trials.’ I have used this quote before but I need to focus on it again because it does help me put things in perspective.
“Perhaps, instead of asking questions of our trials, our trials are meant to ask questions of ourselves.”
If everything came easy we would not be stretched, we would not grow. Joel does not question his life or his trials he simply pushes forward. It is shaping him and growing him as he presses on. I have often prayed for my boys, Psalm 62:6~ He alone is my rock and my salvation; he is my fortress, I will not be shaken. Joel has not been shaken.
As much as I want things to progress faster than they are, this is where we are at. Progress in most areas, some plateaus but we press on.
If I sound down it is only because I have been asking questions of the trial, I have been looking where there are no answers. Every so often I have to give my head a shake and bring myself back to the moment to moment. In the moment to moment there is life, laughter and hope and there is no fear of what tomorrow might hold.
That is my long answer to, “How is Joel?” Joel would tell you he’s just fine, how are you?Pin It