From Expecting to Appreciating

Trip’s follow-up appointment on Tuesday led to him being admitted at Legacy to start chemo a couple of days earlier since he counts were good. This was under the urging of his oncologist and under much protest from his endocrinologist. Things have gone much more smoothly than downtown Children’s. He was accessed in clinic and didn’t even shed a tear! According to Trip, Nurse Jill knows exactly how to do it without hurting him. All I had to do was hold his shirt over his mouth (to avoid spitting on the access site) and Jill did the work. That’s a huge change from the typical four people who have to physically restrain him just to be accessed. It’s obvious we are both much more comfortable being in clinic at Legacy.

After he finishes this round, we wait for scans the week of the 20th to determine the next drug protocol. I’m working on my expectations lesson. It is hard. Honestly, I’m expecting Trip to clear methotrexate and be released from the hospital tonight. I’m expecting his scans to give us good news. I know better than to expect either one. I’m a planner and drive Colson crazy with my need to plan. It makes me feel secure. I don’t like surprises. I know it’s my way of trying to control everything. At this point I know very well I cannot control this disease. I was given great advice last week: change the expectations of tomorrow to appreciations of today. I have consciously worked on that this week when I catch myself projecting what will happen next. It has been a challenge but it has also helped me live in the moment.

Tuesday, Trip’s LCH warrior friend, Jenson, left this world and went to a pain-free place of peace. Although it was expected, the news still ripped out my heart. I was visibly upset and unable to control my emotions while in the hospital with Trip. He asked why I was crying and I told him about Jenson.

Trip stopped what he was doing and asked, “Did he go to heaven?”

I said through tears, “Yes, baby, he is in heaven.”

He looked at me with a huge smile and exclaimed, “That is so cool, Mom! He gets to be in heaven with all the angels! Don’t be sad.”

I explained that I was sad for his mommy and daddy and sister, but I’m so happy for Jenson. That precious little child deserves peace. This disease deserves to be punched in the face.