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 has continued on with therapeutic riding and is loving it. 
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?
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Hi Cheryl,
I came over to your blog from your comment and I was not prepared for such a personal and honest post.
I do not know you, but you do not sound down. You sound in love with your children, your God and your life. You sound like someone who focuses on the good.
Your family is beautiful and so is little Joel.
I work with children diagnosed with Autism and the parents go through a lot of grief. I rarely hear someone reflect with the honest, yet stable state of mind as you have. I will say a prayer for Joel and your family and wish you all the best!
Thank you Francine for praying for our Joel we are so blessed by all the faithful people of prayer.
You know Cheryl, Joel sounds much like my Jacob. Except Jacob has no excuses
They're both the same age, and when I saw Joel's name written, I thought he did a lot better than Jacob! He's on his way to the speech therapist right now and my 3yo is more articulate than he is. It's sad because I can see how frustrated he is when people can't understand him and when he gets excited, he doesn't even try to speak well. He has gained a lot of confidence though over the last many months and before that would refuse to speak to most people outside of our home. Praise God, Joel's healthy and despite what challenges you'll all have to face together, may he always be 
Quinn thank you for your words of encouragement, It is hard to see them struggle. I know Joel becomes frustrated if we don't understand. When he struggles to find his words some people just move on in the middle of him trying to speak they just don't have the patience for him. We continue to pray for him to live a long happy and productive life. Cancer free!!!
Wow, Cheryl. This post moved me deeply. I've had a huge burden for situations like yours during the recent weeks since my son was diagnosed with type 1 diabetes, an autoimmune disease. This is my first visit to your blog – I'm here from VoiceBoks. I haven't been blogging for a while, as we've been adjusting to the disease. God has brought so many families with serious illnesses to my attention lately. Health issues were just not part of my world until – boom! – there was diabetes right in the living room!
Your son is very special, and you are an awesome mom.
Blessings,
Lisa
It is amazing how your life changes in a moment, isn't it. Saying a prayer for you and your son.
Your post moved me in so many ways. Of course I'm moved by your families journey, and the strength of your son. But, I'm also the mother of a daughter who has a brain disorder, although it is different, I have struggled with the same questions, and even though our daughter is 9 I still don't always know how to answer the question "How is Lizzy". Our daughter is my greatest teacher, she never asks why her, she is too busy being Lizzy. I am always amazed how children who have to walk difficult and painful paths seem to have a strength that is amazing. Beautiful post, thank you.
Kathy I will keep your Lizzy in my prayers too!
My heart reaches out to you!
The other day I was talking with a friend about trials and why the Lord makes things so hard sometimes; and I realized that, yes, the Lord can make it easier, but the tough trials are for the building of strong testimonies.
I have come to know my Savior on a more personal basis because of my deep trials. I know Him in a way that can only come with these extra difficult struggles…I am so grateful He loves me enough to give me what I need to return back to Him.
You are doing a great job being a loving mother to all your children. They are so blessed to have you as their Mom!
Becky thanks for your words of encouragement.
Your Joel sounds like a very special boy! How blessed you are to have him in your lives.
Words can describe how grateful we are to have him here with us. He is a gift!
What a sweet and touching post.
Our daughter came home from China with "orphanage hangover." Like you say, other kids came home from Chinese orphanages, but none with exactly her brain. It affected her. Deeply. Through years of therapy and training, she has come so far. I wonder, though, sometimes….
What would our family be like… if we hadn't had to fight so hard to get to where we are now? Will she always struggle more when she is tired or sick — or will she outgrow it someday?
My heart and prayers go out to you as Joel — and all of you — continue to heal. Enjoy NOW!
Karen Thank you for your prayers I will lift up your daughter too!
Children are so much more resilient than adults are. They seem to adjust to changes better. Looks like he is doing great!
Stopping by from VoiceBoks!
He is pushing forward each day, he makes us proud.
Thank you for this, Cheryl.
Your welcome Leah.
I just stumbled upon your blog from VB and have found myself reading about your journey with Joel for a while now. Your strength is amazing and such an inspiration for others. God bless you & your family and little Joel!
Thank you Andrea for your kind words. Some days it can feel almost draining but all these kind comments have been such an encouragement!
Thanks for your comments.
This illness is so destructive. We are not familiar with this tumor, with only neuroblastone. My nephew was three years old when my sister discovered that something was wrong. I wish you God's presence, even on your way to acceptance of your little boy as he became after surgery. You've got him again, but differently than he was. I'll get you "pray" button.
This is my first visit to your blog, so I'm just 'getting to know you'. My heart is going out to you…. 'The trials that afflict the just, in number many be. But yet at length out of them all, the Lord doth set them free' (Scottish Metrical Psalms).
Blessings, and love,
Anne x