Reflecting, Cherishing, and Living (a giveaway too)
Today is an anniversary of sorts. Three years ago today our world was turned upside down. I remember all the details of that day more vividly than I do the birth of my children. I can hear, smell, see, and feel that day almost as real as this very day. I have already shared my memories of that day here. So I won’t go in to all the details again today. For some it might seem odd that I have a need to mark the day. Wouldn’t most people want to forget it. Don’t we celebrate the end of the battle not the beginning of it?
I am not so much celebrating it, as much as acknowledging it with a sense of, well, the closest word to describe what I feel is; respect. It was the day that changed the course of our lives and has brought us to today.
Watching Joel sit looking up at the TV on the wall, just 4 years old, hearing the words, “There is a large mass in his brain.” Only 8 words, yet they were so much to digest.
At times I do not feel like the battle is over, yes, I can tell you the days he had his surgeries, his first and last radiation, his first and last chemo, the battle with cancer I pray is finished forever. Yet Joel battles on. He has come so incredibly far and we are beyond proud of him. The brain however, is a precarious place to do battle, and so 3 years later we continue to rebuild and fight new battles.
Joel has stopped growing and will need to start taking growth hormones. We have yet to go in for his appointment where we get his prescription but, it will consist of a daily injection, for possibly life. At least until his growth plates close. I have not yet started prepping him for this, a day or two before his appointment I will explain it to him, but as it could still be a few weeks away (we are waiting for them to call back with his appointment) I do not want to stress him out. I know he will not enjoy it but as he has already shown us, I know he will take it all in stride courageously!
Joel is ageing out of the therapy he currently receives, and the cost of paying for it is staggering, so I am adding a new hat to the collection I already wear. In many ways we have already been wearing the hat of therapist here at home we are just looking at taking it to a new level. I search for whatever info I can find on the brain and learning, as Joel was hit pretty hard in that area of his brain. We are taking a new approach to education and only time will tell how successful we will be in this latest venture.
The hard part is there is not much info out there on how to help children like Joel so all I can do is look to what has helped other brain injuries and traumas and try it to see if it helps. One thing we are trying with Joel is adding an action to memory work and we will be using bean bags with this. I made some for our kids and thought it would be fun to celebrate how far Joel has come by giving away a set of 5 bean bags. It may seem like a funny giveaway, but it is right where we are at. Bean bags are fun to play with great Physio and OT as well as a great learning tool when paired with memory activities.
If you are the winner I can make your set smaller if you like, ours measure about 6 by 5 inches. I needed something a bit bigger for Joel than your standard bean bag.
I am planning on making some smaller ones eventually so I wouldn’t mind at all. If you wanted them plain with out the embellishment I can do that or if you have girls and wanted all flowers etc. I can do that as well. 
They are filled with real beans so they have a pillow case type covering made from up-cycled jeans, the actual bean bag is made from an old 100% cotton bed sheet.
Three years since our lives took an abrupt change, yet I do not loathe that day, I simply accept it. I cherish my boy and each of his siblings. I do not take for granted that each day is a gift. I thank my Lord for carrying us through the darkest days and the ones with sunshine. We do not know what the next hour will bring, so live this minute and cherish it, don’t waste it. I watch Joel push forward bravely, he looks great I know, but his life is not easy. Yet he pushes on. Push on!
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19 Comments
savannah
Strangely enough, I remember exactly where i was and how I heard the news about the tumour, too, even though at the time I only knew you in passing at church. Joel has come so far; I can see a difference every time I see him. I was wondering what had come out of the appointment to check his growth. 🙁
My recent post Pray for Ellie
CherylatOldPath
I am glad we have gotten to know one another better. We go next week to get his prescription and learn how to use his device for injections, I picked a slightly more complicated looking one but it hides the needle in the machine so he doesn\’t have to look at it.
Cynthia
Cheryl, how time goes by and how life evolves seems so random and yet not. How I admire you for how you've gone through these years and continue on. Blessings to you all. Cynthia
CherylatOldPath
Thanks Cynthia! If you are making summer plans you know you are welcome here anytime 😉
Ashley
Tears. I loved this!
CherylatOldPath
Thanks Ashley!
Rebel Sweetheart
As a mother, I really admire your strength. Most of all, I admire Joel – such a brave young man. Stay strong, and more blessings to you and your family.
My recent post Wordless Wednesday #31 | Moving Up!
CherylatOldPath
Thank you, Joel is my hero I am often amazed at his bravery.
Christy Garrett
Thank you for sharing his story and his journey, your post will be an inspiration to others who are going through a similar battle.
My recent post Can You Tell the Difference Between Baby Blues and Postpartum Depression?
CherylatOldPath
Thank you Christy, I hope Joel\’s journey inspires others too!
Sharon
Wow…just wow! What a beautiful and lovely tribute to your son. It made me all weepy 🙂
My recent post Praying The Rosary For A Gay Man I Never Met On My Birthday…
Karen Dawkins
Cheryl,
I was first drawn to your blog by Joel's story. My son has learning differences, too, though not the same cause. Joel is so blessed to have such an engaged mom! As I near the finish line with Ben, I just want to encourage you to keep pressing — even when it doesn't seem like you're making headway, you are! Ben's now thanking me for my dedication to him. It's the sweetest thing you'll ever hear.
Until Joel can say it, THANK YOU for loving him with such fierce determination!!!!
CherylatOldPath
Thank you Karen! It is wonderful to hear your encouraging words sometimes it feels like an uphill battle!
pepper tan
Oh, I"m left speechless. Yes, the only way to go is forward. Push on! Stay strong.
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Leigh
You are a strong mommy. Sending love and prayers for your little man. I seems the growth hormones will be the next hard step for you guys. Hoping it goes smoothly. _Leigh xoxoxoxo
Patricia
My heart goes out to you – not in sorrow but in joy – you've come so long and far with him and now you are looking forward – forward has many possibilities, the past is written in stone. Look forward to spring, to fun, to sun, to learning and progressing and smiling. Smell the flowers, they do smell differently and in smelling you learn to use another skill that you simply take for granted. Make a game of it – different smells under napkins – how many can he identify… with a treat for each one he gets.
aknitica
Hi Cheryl! I don't think we've met, but we know some similar people: Tanya, Sarada… I see how much you mean to the people around you, and how much everyone cares about Joel. Maybe this is silly, but have you read The Brain That Changes Itself? It's a fascinating book about neuroscience, and your comment about reading up on how the brain learns made me think of it. You've probably already seen it, but just in case you hadn't, I wanted to mention it. There was a story in there about a man who helped his dad recover from a stroke in the most interesting way. Amanda
CherylatOldPath
Thanks so much Amanda, no I haven\’t read it I will check it out thanks again!!!
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