Started this yesterday…finished it this afternoon. That is so typical of things here now… seems so hard to get anything completed when planned!
I’m sitting here at my desk at CINAFE and my aim was to work on next week’s schedule of events as it’s going to be a very busy week. The problem is all I can think about is Kenneth. I thought if I could “talk” about him with you, then it would help me express some of what I’m feeling and maybe be enough of a release that I can focus on what I need to be focusing on today.
We had planned on going to Tipitapa this past weekend, even though I’ve taken this month off from teaching, but I wanted to go check on Kenneth. Saturday, Susanna e-mailed to tell us she was flying back to the States for Christmas that following Monday and to let us know Pixie was “available” if we wanted to dog-sit while she was gone. She asked if we could take her to the airport Monday morning so we decided to just wait to go to Tipitapa then to help save on our gas as the airport is on the way to Tipitapa. Sunday afternoon, Susanna called and said she was going to go with someone else so we decided we would go ahead and come in to CINAFE on Monday morning and work for awhile. We finally left here about 3:15 to head on over to Tipitapa.
Danelia heard our car pull up and came out to meet us. Her eyes filled with tears almost immediately. She said that she had made 3 trips to the hospital in the last week, with the latest being that morning. Monday’s trip was to try to get a good ultrasound test done. It was unsuccessful. It seems that the position they need Kenneth to lie in is also a position that causes him excruciating pain and so they said until he can lie still as they need him to do, then they can’t do the test.
I understand that they need him to lay still. What I don’t understand is why they can’t do something medically to help him do that. Maybe I’m just fixated on trying to alleviate his pain but for professionals in the medical field to be angry and frustrated with a little boy who has been diagnosed with terminal cancer, who is scared and who is crying out in pain and fear just seems wrong to me. But I’m not the only one who feels that way. His mama does, too, and my heart just aches for what she’s going through herself.
The doctors told her during one of the visits last week that they think the tumor is growing much more rapidly now and that it is pressing on the spine and on the intestines. That is one of the reasons he no longer has normal bowel functions. This only complicates things as he is immobile now from the waist down. But they want a good ultrasound to make a correct diagnosis. We all want that.
She told me that she is supposed to take him back to the hospital on Thursday or Friday. One of her brothers who has a car, said he could take them if he goes on Thursday but he can’t help them on Friday. I told her that we could come and get them if they needed to go that day. She told me that they would need to be at the hospital by 7:00 and that she was afraid that was too early for us. I told her not to worry about that…and then, I turned and asked Jim if it was okay, knowing that it would mean we would have to leave our house a little after 5:00 a.m. Jim is a saint, in case you all don’t realize it. He said it was fine.
Danelia told us that one of the doctors told her that he thinks the cancer is spreading further down the leg and that Danelia needs to watch for fever or signs of infection. She was shaking when she told me that Kenneth had started running a low-grade fever that morning and that his feet were swelling. But, she said that he didn’t seem to be having any pain. She expressed even more concern that she couldn’t get him to eat anything. The doctors had simply said to bring him back Thursday or Friday.
Danelia said she was scared. She said that she knows that God wants her to continue to trust Him. As so often happens these days, I joined her in her tears. I agreed that God wants that from all of His children. I also told her that God knows that we love our children and He understands her fear.
She said that she has decided that if they want to put Kenneth in the hospital, that she is almost ready to let them do that just so he will be more comfortable. She can’t bear seeing him in pain and trying to lift him and carry him without causing him pain is becoming more and more difficult. She is so torn as to what to do. She hates the hospital environment and I don’t blame her. Kenneth hates it too. It’s not a comforting place to be. But she knows that he can get care there that she can’t give him and that they can help keep him nourished.
She knows she would have to stay with him 24 hours a day there which would also mean that she couldn’t be at home with Lindsay. Neither could Arturo as he works 12 hours a day, 6 days a week and sometimes more. Lindsay would have to stay with Danelia’s mother and no one wants that as Lindsay does not do well being apart from her mama. Danelia’s mother has her own health issues plus she isn’t a very affectionate individual.
Life is scary right now for the rest of the family but it is also very unsettling for Lindsay…she understands enough to understand that Kenneth is really sick but I don’t know that she really grasps the entirety or the severity of the situation. She does understand that whatever is happening with Kenneth is bad as it makes her mama and papa cry when they think no one sees them. She has whispered to me before that “mama was crying this morning”. Danelia knows that being separated again from Lindsay would only add to both their anxieties.
As Jim and I stood and listened to Danelia, I so badly wanted to give such wonderful and profound words of wisdom and comfort & all I could do was cry with her. It was and is such a helpless feeling. I looked around as we stood at the broken down fence that acts as their gate. The dust swirled as the wind blew across their rutted dirt road. The rusty, hole-ridden piece of zinc that she had put across the front window of the school to keep the sun out looked even more sad and dilapidated as it sat tilted at a precarious angle. Celeste and Genesis, little girls who live a few houses down the street and are students at Rayitas de Luz, stood silently and somberly, watching us as we both had tears roll down our cheeks. The whole thing just seemed surreal as like conversations have so many times before.
We both wiped our faces in preparation to go in to see Kenneth. He isn’t unaware of what’s happening to him but neither of us want him to have to see “doom and gloom” faces all the time. She said she had moved him out to the school room as it was cooler and he could rest better out there. She said he was playing music...there’s not much else for him to do. He can’t get down on the ground and play with his toys. I know it’s difficult for him to hear the other children out running and playing when he can’t even move his legs of his own volition.
I walked in, expecting to see him lying down on the table that had often served as a makeshift bed before we gave the kids bunkbeds. I was surprised to see him sitting up and looking pretty good. He was in his wheelchair with his feet propped up on a pillow in another chair. He had a small guitar in his hands...someone had given it to Arturo to give to Kenneth. He greeted us with a smile and I asked him how he was. “Bien”. Fine. That was good. The last few visits had garnered the response of, “Un poco mal. A little bad.
I touched his bare feet. I was struck by two things. They were terribly swollen and they were spotlessly clean. Clean feet on children in Nicaragua are a novelty. But seeing these clean feet were more than a curiosity to be glanced at…they were visible signs of a little boy who can no longer live the life a little boy should be able to live. He can no longer walk to the bathroom, pedal his bicycle, run to the dirt mound and jump off, kick a soccer ball, climb in and out of his bed. The sight of those clean, bare feet stabbed at my heart.
There were two other things I noticed when I touched Kenneth’s feet. First of all, that he didn’t react. I touched lightly because I wasn’t sure if my touch would be painful to him or not. He didn’t even twitch. Maybe my feet are just very sensitive but if someone touches them with a lot of pressure or with little, I move. Kenneth’s feet remained absolutely still.
The other thing I noticed was that while both feet were swollen, the right one was noticeably larger and it was quite feverish. The heat ran up his entire right leg. The toes on his left foot were cold to the touch although from his ankle up, it became progressively warmer. I was hoping that was due to his feet being elevated. I asked Kenneth if he had any pain and he said no. But he was still dealing with the incessant itching on his back and around his waist. We were thankful that he was having a pain-free day regardless the reason.
I asked him if he knew how to play the guitar. He shyly shook his head no. I told him that I didn’t know either and I wanted him to try to play something for me. He grinned but again, shook his head no. We began talking about music, toys and cars. Boy talk. He would answer my questions but didn’t seem to want to talk much. Danelia had gone in to the house to sweep and to some things while we were there to sit with Kenneth. I realized how difficult just even doing her daily chores must have become with trying to balance a day full of housework and taking care of a sick little boy.
I asked Kenneth if he could choose anything in the whole world he would like to eat, what would it be? He shrugged his shoulders. I asked him, “Un elefante?” An elephant? He grinned and shook his head no. “Que?” What? I asked this almost with trepidation…what if he told me something that I couldn’t get for him? He smiled and said very softly, “Carne asada.” Grilled meat. “Carne asada? Le gusta?” Grilled meat – do you like it? He slightly nodded his head yes, still smiling. I asked him if I got him carne asada, would he try to eat some of it. His head nod was much larger this time.
About that time, Bayron, the little boy next door and Kenneth’s best friend, came over. He is very affectionate with me and will often pick flowers from whosever bush he can get them from or make me flowers from bits and pieces of things he finds and give them to me. But even when he doesn’t come bearing gifts, he always has a hug...which is of the gift I love most. I miss getting those hugs from my grandkids.
I have to laugh at how Bayron is with me. He sometimes will sit next to me and will just play with my fingernails as he is fascinated (as are most kids) with longer nails. Women in his barrio don’t have long nails as they wash clothes by hand on a concrete pila which would negate the thought of any kind of manicured hand. He will turn my fingers this way and that and closely examine my skin. He always tells me how “white” my hands are.
Or if he’s standing next to my chair, he will mindlessly play with my hair…he loves the silver in it. Silver sounds better than gray. Regardless how it’s defined, Bayron finds it very interesting and will twirl it around his fingers or try to separate the few remaining brown strands from the rest. I’m sure I must look quite a mess when he’s doing this but honestly, I gave up worrying a long time ago about being “put together” here. It’s no longer important to me but I do admit that I’ve wondered at times how much dirtier my hair is returning home from Tipitapa than when I arrive there.
Bayron is another little boy that we’ve been able to help some with medications. He suffers with terrible headaches and has been diagnosed with lesions on the brain as a result of being beaten by his father when he was small. He’s a terribly sweet little boy with a wonderful smile and he loves to teach me new Spanish words. He’s much more comfortable with women than men, which is understandable due to his home life. But I often worry about Bayron and his future. I’m glad he’s a student at Rayitas de Luz.
Danelia came out to see if we would stay with Kenneth while she went to get Lindsay from church. We told her we would and I asked her where close by that we could go buy carne asada. She said that there was a place but that it wasn’t safe for us to go there and that she could go get it for us. I asked her how much it was and she told me. I got in my purse and gave her enough money to buy carne asada for all of them and told her that was what I wanted her to do. She protested saying it was too expensive. I told her that if Kenneth would eat some of it then it was worth every penny. She gave me a nod, a smile and teary thank-you and tucked the money inside the waist band of her skirt and left to go get Lindsay.
Bayron and Kenneth are best buddies. Kenneth was the one who often looked after Bayron in the neighborhood and now, Bayron takes care of Kenneth. Kenneth’s countenance brightened measurably when Bayron came over. Bayron began digging in the old rice sack that serves as Kenneth and Lindsay’s toy “chest”, obviously searching for something. He pulled out ratty looking Barbies and well worn stuffed animals, cars with chipped paint or missing parts. Kenneth watched as each toy was pulled and would name the ones that we had given him. Not a one could qualify as “gently used”. Jim and I looked at each other and smiled. We were glad that he had enjoyed his toys so much.
Finally, Bayron found the little bag of Hot Wheels that he was looking for and gave it to Kenneth. Bayron set up the little Hot Wheels stunt track that we had given Kenneth last year and Kenneth would choose which car was going to go down the track and when to let it go. Bayron played for Kenneth and Kenneth seemed to be as involved in the process as he could. Before long, two other boys who looked to be about 6 and 8 years old and their mother came by to also visit with Kenneth and Danelia. She told me they attend the same church as Danelia and that she wanted to come visit with her for awhile. The two little boys joined in playing and we watched as the four of them laughed and talked about the stunt track and cars.
Shortly after that, Danelia and Lindsay returned. Lindsay quickly scrambled up on my lap for hugs and tickles. The boys continued to play and Danelia and her friend were talking. I thought for a minute how normal everything seemed…and then I saw Kenneth, sitting in his wheelchair and looking down wistfully at his friends playing with his toys and I realized how “not normal” it all was…and just how quickly this new “not normal” had become “normal”.
It was getting dark and we needed to go. We still had to stop by Miguel’s house to check on them. I treasure the time we got to spend with Kenneth “babysitting”. He’s so precious to us. It was a quiet ride home. We continue to pray God’s will be done in this situation. The words are easy to pray…the reality of how that may play out is much harder to face.
