I have been sick it seems for the last month straight. I believe I did have a couple of good days but they were short lived.. At one point I could not see, hear or talk. I had lost my voice from a constant sinus issue and my eyes and ears had an infection. On a daily basis I deal with problems with graft vs. host where my donor cells are attacking my body, a common thing with any transplant. A little GVH is good because it is what keeps the cancer away but when it gets out of control it causes many issues. Over the last couple of years I have dealt and tolerated these discomforts that seemed to change daily. There is almost a game that I play each morning, trying to identify within the first moments after waking up what issue I will be dealing with that day. Our daily schedule in the past has not been conducive to getting the treatment and attention that I needed. However life has calmed down enough where it is finally my season. A time where we can concentrate our efforts into making life a little easier for me. I I say "our" efforts because Jason has been my greatest advocate. He has scheduled numerous doctors appointments ( I have to see almost every kind of doctor) and got the ball rolling for treatment of my Graft vs. Host disease known as GVHD. We even traveled to Moffitt on Monday to get a second opinion on a course of treatment. I have started physical therapy in hopes that I will get full range of motion back in my arms and have been started on new meds that will aide with my eye and stomach issues. There are advanced treatments on the horizon and I have a long road ahead of me but this is all for the good. I am hopeful for the relief and improvement of life. Not only my life but the life of my family. It gets old always being the sick one. I carry guilt for the limitations I impart on Jack and Jason because of it.
However along with the daily discomforts, I have daily reminders of the blessings that have come. There are always those tender mercies that occur that help me realize and put things into perspective. One example happened a couple of weeks ago. It was one of those really sick days and I just could not face the day. I felt horrible and to top it all off my eyes were irritated and I could not even see. There was no way I could get Jack ready and take him to school. I stumbled into the kitchen and got down a box of cereal for Jack to eat and gave him a drink turned on a movie and headed back to bed. I think that poor child even ate his cereal straight out of the box. The rest of the day continued on like this. I laid in the guest room so I could be close to the tv room and the kitchen. Jack would come in when he needed something he couldn't reach or to ask me a question. I felt like a horrible mother but too miserable to change anything. Just when I was in the middle of my pity party Jack came in and laid an envelope on my bed. It had his name on the front and the back flap was taped down by painters tape. He said it was for me. I opened the envelope and unfolded the paper, on it was drawn a huge heart. Jack had made me a love note.
My heart was touched. It was such a gentle reminder that I was loved and watched after. Later to add to the sweetness that child came in to my room, told me he was tired and that he was going to take a nap. He then turned went into his room, closed the door and tucked himself into his bed. I was shocked! Jack always refused even a suggestion of a nap. I cried, cried some more and then issued a prayer of gratitude for the sweetness of that child.
I have recognized this pattern in my life. There are bad experiences and pain but there always comes a great blessing of joy and comfort to combat. I am excited and nervous to start this path of new treatment. It is one that is scary for me. I am forced to return to a life of endless doctors appointments and tests. I have to keep telling myself that this is to help things continue to get better. I am just grateful to know that I am loved and watched after and that I can do these hard things.
In honor of Easter I am sharing one of my favorite messages of hope. It is so fitting on this Good Friday and I forever hold onto the promise that Sunday will come.
