Un poco mal...

Move #24 is in process. I’m supposed to be packing but thought I would take a few minutes to try to recap the last few weeks for you. Moving seems to have dominated our life this past month. How many times have I said “I hate moving!”? If you ignore the times before I was verbal, I would guess at least 20. This move is no different.

We are once again almost in a state of limbo. We have to wait until our neighbors move out for us to move in. And I say that with such mixed emotions…I love our neighbors and I don’t want to see them move. I would almost be willing to stay where we are if they would decide to stay here…but the lure of much-longed-for family and the American way of life has won out and they will be leaving Nicaragua very soon. We anticipate being able to start moving in to their place in the next day or so and hopefully, that won’t take much more than two days to get everything moved and then, I am going to start the “nesting” process all over again. I don’t know how birds do it!

After living here for a month, we have learned somewhat the things we can “work in” to our smaller accommodations and those we will have to let go. I’m afraid the freezers are going to have to go. The old upright is currently serving as a shelving unit in the bodega (the enclosed open-air laundry room) and the chest freezer that I love is currently occupying too much of my precious kitchen space. Both are going to have to find other homes. We have talked about getting one of those really tiny little chest freezers just so that we can keep ice on hand and the occasional frozen foods that go on sale, but that’s a conversation to be continued on another day.

Let’s see…we just had company for a week. Sadie (our youngest daughter), Marc (her fiancé) and Brittni (Sadie’s friend from vet school) came to spend Thanksgiving with us and we had a very busy week. We made three trips to Tipitapa which is what I want to share with you today. We went once for Saturday English class (with 28 in attendance!), once to attend Kenneth’s little sister’s (Lindsay’s) graduation from preschool in to primary school (a 3 hour event!) and once for Lindsay’s 6th birthday party. Actually, our family took care of putting on the party, supplying the piñata, gifts, cake, soda, balloons, etc. but we had it at the Rayitas de Luz school inviting the neighborhood kids. Lindsay loved it! She was dressed in a princess outfit and she played the part to the hilt…she loved being the center of attention.

It has been difficult of late for Lindsay. She is finally old enough that she is very aware of the fact that Kenneth often receives more attention than she does and even though Kenneth’s cancer demands that attention, it’s still hard for a little six-year old girl to try to process what all of that really means. Rarely does she say anything, but Lindsay has become acutely aware of how she is impacted by Kenneth’s cancer and her child-like frustration became evident the past few weeks.

Two weeks ago, when it was time to have school pictures taken, Lindsay didn’t get hers because that was money that was needed to take Kenneth in a taxi to the hospital…he can no longer walk to get on the bus. We didn’t find this out until after school pictures. We have taken pictures for the family to have but it’s not the same. Lindsay was happy and her parents were very grateful but all recognized the fact that Lindsay appeared to be the obvious one who had to make a sacrifice.

Also, Lindsay was told she was going to have to miss out on her graduation as the family had no way of going and taking Kenneth. The three block walk would have been over badly rutted dirt roads and it would have been too difficult trying to push Kenneth’s wheelchair…the pain would have just been too much for him. Even though Lindsay understood why, her disappointment at missing her graduation was very evident in her tears. Thankfully, we found this out the day before and we were able to juggle some things around so that we could get everyone, including Kenneth, to the school on Sunday for the big event. We were even able to get Lindsay some new shoes to wear as her old school shoes had holes in them. I don’t know who was happier that day, Lindsay or her parents.

The other big looming disappointment was the birthday party. Danelia had told Lindsay that they just couldn’t do a birthday party for her this year as all their extra money was going to transportation and medicines plus various other items for Kenneth. That’s when the tears also were accompanied with the accusatory “why’s”. Why did Kenneth get a big party for his birthday and she couldn’t have one? Why could Kenneth have a piñata but she couldn’t?...plus, I’m sure, a litany of other questions.

We were there for part of that and seeing the tears in Arturo’s eyes as he tried to explain the adult answers to a child’s questions in terms that she could understand, was enough for me. That’s when I knew that we were going to do a party for Lindsay. Here’s the part that I want to reiterate to you…we couldn’t be helping pay for taxis, buy medicines, food, shoes, pictures and birthday party supplies without you. Jim and I feel so privileged to witness the impact you make on the lives of so many people here…I wish you could see it first hand for yourself.

Now, I’ve mentioned Kenneth a lot but haven’t directly addressed where he is right now with his cancer. If you read my Facebook entries, you already know. If you don’t, I will give you a quick rundown. Kenneth’s pain in his legs and lower back has progressed to the point he can no longer walk. After various x-rays and sonograms, his pediatric oncologists said that the tumor in his pelvis is beginning to grow again and is now pressing on nerves. His bowels are no longer working as they should which has added another dimension to Kenneth’s care. This is due in part to his medication and in part to now being immobile. We are continuing to seek ways to help Danelia cope with this latest development. He continues to battle pain and nausea and both have caused a decrease in his appetite.

The pain medication is obviously a double-edged sword. It does help in keeping Kenneth’s pain somewhat manageable but it is loaded with side effects and taking it in conjunction with his latest round of cancer meds has opened up a whole new world of challenges along with the things I just mentioned. He has an itchy rash now that he mindlessly scratches until raw. I always fear infection and check his rashes every time I’m there. He’s often either very lethargic or the other extreme of being very agitated and short-tempered. His frustration with being held prisoner by legs that no longer work and pain that makes its presence known takes form in unpredictable mood swings. Kenneth still tries on occasion to give me his sweet smile but more and more, when I ask him how he feels, the smile no longer appears and he answers with “un poco mal”…a little bad. That is devastating to hear coming from him. He says a little bad but it’s obvious he is in pain.

Kenneth’s prognosis now? According to the doctors, there is no hope. According to God, there is always hope. And so we do. Our hope is in Christ, as is Danelia’s and is Kenneth’s. I know God has put this family in our lives for a reason and I don’t want to waste or trivialize one moment of what they are teaching us. These latest developments with Kenneth have come much sooner than we had thought. We were all on board when Kenneth seemed to be in remission and the doctors said the tumors were no longer visible in his chest. We all tried to ignore the “inconclusives” that we kept getting on so many of his tests. We all kept hoping that the leg pain that had returned was due to over-exertion from playing too hard or riding his bike on those bumpy roads. Even the doctors wanted to look for bladder infections and kidney infections to explain away the back pain. But that doesn’t seem to be how the book on Kenneth’s life has been written by his Author. Right now, I’m not sure how I feel about all of this. I guess I would have to say, like Kenneth, “un poco mal” and trust God with my own pain.