Friday, October 19, 2012

I could take this picture every day

Eli and I were early for his appointment with clinic on Tuesday after the time had been changed to an hour later than scheduled. I fed him applesauce while he distracted himself with a video game trying to get something, anything at this point, in his belly for lunch. We were waiting to hear if his oncologist decided to pull his hickman line out despite his struggles with eating. Though his treatment was done, the line remained because it was used for the nutritional solution that sustained him. When his name was finally called an hour past the revised time, we went through the door to stand by the white board where the nurses assign rooms to the kids by writing their names by a number. Our path was blocked by a gathering of people, so we slid along the wall to take our place beside the board in the narrow hallway to wait. To avoid staring at the commotion of the small group that we were smooshed up against, I glanced at the board beside us and his name was not there yet. So, I looked down and around as Eli flew a U.S. Navy jet toy in his immediate air space. Eli’s doctor stepped into the hallway from a door directly behind the group and asked quietly to the group, “Maybe go to another room or something, is there one?” His nurse, who had summoned us, was jumbled in her thoughts, “Yes, we can. No wait, I’ve got Eli, too, he’s here. Hang on, let me see,” she told him as she motioned for us to follow her. When I looked up, a mother whose face was frozen in agony stood an arm’s length from me. I didn’t hear her news, but I did not have to.
Eli and Vic (and Caleb) playing frisbee at th retreat
 Slump shouldered she sobbed into a damp piece of tissue surrounded by all women St. Jude personnel in nice clothes with lanyards around their necks holding an identification badge. I had seen this young mother before with her son, who is about six, and a baby, who is about seven months. Those handful of times she was always by herself with both children, save once that I saw an older woman with her. I had been sitting in waiting rooms a couple of times as she talked without concern for privacy on her cell phone about the six-year-old who is the patient. I learned his name, and that his neurosurgeon was the same as ours at LaBonheur. I could see from his scar that he likely had the same cancer (in general) as Eli, and I learned that he, too, had at least one mid-treatment surgery. Each time I saw her, she wore slouchy lounge pants and he almost always wore pajamas, no matter if he was curled up in a wheelchair or if he was bouncing off the walls. When he needed it, she pushed a wheelchair or pulled a wagon for him as she propped the baby on her hip. The baby smiled all the time, even at the murals on the wall as they passed by. On this day, as Eli and I were being led to a room, I heard this broken mother giving instructions to someone to contact a certain correctional facility and ask for a private meeting “to let him know.” I am assuming this is the boy’s daddy. The nurse left our door open, and the group with the mother still at the center migrated toward the room across from us and shut the door. I could now here the boy next door to her room playing with someone, a hospital volunteer. As the mother emerged a few minutes later, still red-faced and scrubbing her nose with a balled up piece of tissue, the boy came bounding out of his holding area and in his coarse voice said, “Look, mommy, look at this.” As she walked toward him and then slowly past, she reached for the picture and said, “(Name), wow, that is cool. Ok, look stay in here a minute and play. I will be back.” And, honestly, unlike most times I saw him, he did as he was told and I could hear continued interaction with whoever was in the room playing with him as the mother settled into yet another new reality. Eli was in a playful mood completely unaware of the pain that left room three and the tragedy that colored a picture in room four. I soaked in the moments wanting to learn from what I was seeing and hearing, trying to feel a little of what she was feeling so that I could strengthen and thicken my own skin because my time is coming. But, in room six, as Eli laughed and taunted me, using his weak bony arms and fingers to push, poke, and pull at me like a playful lion cub, I fought the distraction outside to soak in my own moments inside because my time is coming. Many months ago, I described in a post an experience I had running around the St. Jude campus while Eli was in his school session. I had been warned to stay inside the fence because of the crime level of the area, so I pushed that a little and would run in the grass right up next to the fence to get the longest distance on the least number of laps. On one occasion, as I ran along the fence, a man walked on the sidewalk next to the fence on the other side. It struck me then how close he and I could be to each other yet he was not safe and I was, at least in that moment that our paths bumped. On Tuesday, I was struck again at how close, literally and figuratively, I was to this other mother, yet she was in anguish and I was not, at least in that moment that our paths bumped. It is so difficult to stay in your own moment as other moments fire off around you constantly. I still watch Eli closely as I have said before that I do. I watch him blink and breathe, trying not to let what I’m watching for distract me from just watching.
The walk up to the Natural Bridge
Since we have been home, he has seemed a little low energy, but, today, at least, he has done decent with his eating. He drinks a lot of juice – not the fresh, raw stuff yet, but still it is the commercial all-natural organic pure stuff, so, a step in the right direction, yes? He has been going to the tutor's three days a week for an hour and seems to be doing well with that and I think looks forward to it now. His mood fluctuates, with Caleb especially, so there are peaks and valleys, but overall he seems a hair below average happy. I think some of it is that he is tired. The weekend before we went to Memphis on Monday, we had been to a family retreat with our church group. Our family minister was so good to make a special effort to accommodate our needs with Eli, so we went and it went well. The kids had a super time, and Vic did a talk at one of the adult study sessions that seemed to go over well. Me? Well, I’m not sure why I went because I did the same stuff I do here. I had to pack our entire house since we all went, then make the beds there, deal with Caleb, help make supper, plug Eli up to his bag, help supervise other kids while the parents were at the study session, then give baths (to my own kids) and put (my own)kids to bed.  But, if I have to do everything I already do at home, at least it was breathing the air of the fall change in a beautiful west Alabama backdrop with our wonderful church family. It felt good to be together, and to be together as a family with our friends. It felt like a a family kick-off with a renewed focus on our family and our God who has shown his power these past many months. Eli had so much fun being around other kids, although he did struggle to keep up physically even more than he did before. He often just stood in the play area as the other kids ran around at full tilt. Nevertheless, it was super and super timing for us to get to participate as a family.
The oldest jail in Alabama
On the way home we stopped at a couple of fun touristy things. The longest natural bridge “this side of the rockies”, and the oldest jail in Alabama in Houston. I also wanted to share that the Halloween costumes were a hit. I did not get to talk to Target House manager about Christmas. We were running so late from the morning delay that I just didn’t have time, but I will call her soon. There are so many other kids on my mind tonight. Ryan is having some pretty tough pain as it is assumed his tumors are growing. Jayden’s seizures seem to be under control or at least have lessened and they hope he is extubated tomorrow. Kyra seems to be hanging in there, but I think is on continual pain medication. I just saw where Thomas has run a fever and is headed to the ER. And little baby Johnathan is having a tough time of it right now. Little Collin, who is fighting his third bout of medullo was just declared N.E. D. (No Evidence of Disease!) That is just so wonderful, and I guess technically that is what Eli is right now. But, that little guy Collin is tough. I’ve added a new girl to watch Baylee. She is fighting relapse medullo , and is doing well!  McKenzey is chipping a way at her target, and Brittney prepares for her first round of chemo. I try very hard to get names right, and to get kids in, but there are so many.

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