Joy is currently at MD Anderson (MDA) with James. On the way to the appointment today, James became ill in the car and vomited all over himself and his car seat. Joy called, frustrated that she did not have a change of clothes. Even after encouragement from me, it doesn't take away the smell or discomfort that James is feeling. Then, as she arrived there this morning for a series of three shots, they required that he have a blood draw. This added at least one hour to today's appointment for Joy. This was supposed to be a quick and relatively uneventful trip today. We are learning that "supposed" shouldn't be in our vocabulary.
I just wanted to take a few minutes out of my work day to process some of the overwhelming thoughts and feelings that we are both experiencing right now. This blog provides such a great forum to pour out our heart to so many that care and support us through listening, encouraging words, and prayer.
This 21-day trial of steroids is emotionally and physically exhausting. James is in a constant state of unrest to the point that he doesn't seem to feel comfortable in his own skin. He cries and whines for hours at a time for 10 - 12 hours a day, and he is unable to communicate what he wants and needs, partly because he doesn't really know and partly because he isn't communicating through anything more than grunts, moans, and cries. He hasn't taken more than a 30-minute nap during the day, which only further complicates his feelings of frustration. Imagine your worst day - where you feel physically ill and in pain, where everything you try to accomplish ends in failure, and where you are trying to rely on others for support, but no one will listen. I really think that the steroids make James feel this way, and it's unbelievably frustrating that we are unable to help alleviate his pain. ON TOP of this our beautiful little girl seems to sense that there is unrest in our home. She cannot tolerate being put down for more than 5 minutes, and she is primarily demanding her mother to soothe her. I hurt for Joy that she has to go most of the week doing her very best to meet the needs of our children, keep up with the house, and support me. We are hurting right now and your prayers are so very needed. Luckily, there is some respite coming with the holidays, allowing me to be more available to help during this trying time. We try to remind ourselves that this is such a brief time in the grand scheme of things, but it so hard to remember that during this current trial. Thank you for being present with us.