Joel asked if he could have a wheel chair….. I am looking into it. He has been using Great Grandpa's Cane to get around. And it has been working alright. But today, Grant brought him home a walker……. Joel laughed and said that he was practicing for when he is 90. He said that by then he would be a pro.
The virus is gone now but he has picked up an infection the lymph node near his left hip. At first we thought it was just really bad side effects from the steroids cause he is always limping and in pain the week after taking them. But Sunday night he got another fever and Grant took him in to emergency. The x-ray and ultrasound came back clear but they found a lump near his hip. He will be going to the hospital every evening for IV antibiotics. We are just waiting now for the blood cultures to come back to see if he can start oral antibiotics at home.
Joel's attitude is great. He is still not eating much. He has been sleeping on the living room floor cause he can't handle the stairs to his room. He doesn't seem to mind us all tiptoeing over and around him every morning. He does not complain but I know he is in quite a bit of pain. He does not usually take any extra medications cause he does not like the side effects. He prefers to have his spinals and other procedures done with a bit of discomfort and a clear head. But the past few days he has been taking quite a bit of morphine, it doesn't take away the pain completely but it does take the edge off. But it does affect his sleep at night and it causes him to have panic attacks and very strange dreams. I am not allowed to give him tylenol cause it masks the fever and with his low immune system we need to know if he has a fever. But we are still looking for other ways to manage the pain.
His younger brothers try not to drive him nuts but it is hard when they keep being told to be quiet and settle down or go outside and all their plans get canceled because Joel's needs come first. Sunday night they wanted to go skating and today they were supposed to go swimming. Instead Grant has taken Joel to the hospital again. The boys and I will have a game night, watch a funny movie, have popcorn, chips and pop. Tomorrow the boys and I will take Joel in to have more blood work done. I will bribe them with something small, maybe mocha and timbits in exchange for them helping and doing it with a good attitude. I feel guilty sometimes, I want them to have normal boyhood memories, adequate parental attention and no worries. But at the same time, they have Joel, an amazing role model, they are learning to take care of others and to put others first.
And Me? I think I am learning patience and to go with the flow. I usually have a long list on the go and I am usually multitasking….. doing a thousand things at once. I just can't function that way anymore. I still make my lists but they are usually just daily lists. I have let go of all my monthly, yearly and life long plans. And I can only think enough to do one thing at a time. The funny thing is that life still goes on, enough still gets done, everyone is fed, clothed and still alive…… it is all good.
Rachel gave me Ann Voskamp's book "One Thousand Gifts" for Christmas. I cried like a baby when I read the first two chapters. She seems to write my heart and feelings in a way that I can't cause I feel like I need to censor myself. She had the same nightmare that I had been having. I read that chapter shortly after having the dreams about doctors and cancer and I haven't had that dream since. I am going to read the book again, slowly this time, and I will do the book study and start my own gift list too.
But the boys are laughing and watching a show so I should go join them. Please pray for Joel, that his body will be able to fight the infection quickly and for pain to go.