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!Pin It