I do not joke, when I say that the steroids changed our day to day in dramatic ways. I wanted to wait to put pictures up of the changes the meds caused in Jack, until I could show the progression of change. It really was quite dramatic. Each morning, I observed that he seemed bigger... which perplexed me that he could change so rapidly. My eyes could not believe it, but my back and arms certainly knew it was true. Jordan and I both were achy all of the time and our backs were just so sore from holding him.
It was truly heartbreaking to watch him unable to stop eating, knowing that each bite was making him bigger and more uncomfortable. The weight gain was primarily in his face and tummy, so his poor legs were just not used to holding so much weight. One day when I was giving him a bath, his legs began to tremble under the weight as he was standing for longer than usual. I kept having to tell myself that this would soon end, and we would get to a point in his treatment where I would be begging him to eat something!
He was such a trooper given the inability to control his appetite. God gave all of us such grace to love him in spite of the constant demands for something to eat. And there was so much grace on him, to not be angry and physically act out in anger , which is a common effect of the steroids. Even though he was up most of the night hungry and was feeling pretty miserable, he still gave us smiles and laughed at silly things. We are grateful for the moments of joy in the midst of this past month of difficulty.
Thankfully, since being home from the hospital 2 weeks ago (has it been that long already??), he has already lost almost 3lbs and is back to his crazy ways! It is a JOY to have our boy back. We honestly had forgotten just was a sweet and silly boy he truly is! More on that later.... here are some photos to prove just how drastic the change has been.
(the last day he got steroids)
I know the change is shocking. He really looked different. He still does. It is hard to watch your child change so dramatically and not be able to help them. I think having walked through this brief season has given me more compassion for others. It has taught me to see beyond the appearance and just see the boy that I love so so much. I pray these lessons stay with me for the rest of my life. I truly feel like I have the privilege to lay my life down for Jack, and especially during this time, was able to lay it down in real and tangible ways. It has been good for my soul in so many ways. And now that we are on the other side of the first phase of treatment, I am all the more aware of the abundant things we have to be grateful for!