Kenneth...

The last few days have been difficult.  I'm not sure how coherent this is going to be...I'm filled with so much emotion and don't seem to be able to get it out as well as I would like.  

This past weekend, I told Jim I felt like we needed to go check on Kenneth.  I couldn’t explain why, but I was feeling uneasy.  So Tuesday, we made the decision to go to Managua on Wednesday.  I canceled our Thursday classes and rearranged our schedule for other things. 

Wednesday morning, I called Danelia.  I thought it was Kenneth who answered the phone and although the voice was soft, I was surprised it was as strong as it was.  I asked if it was Kenneth and there was no answer and so I then asked for Danelia.  I was told she had gone to buy something so I just said that we would be there the next day and was told that was fine and the phone call was over.  That very brief and mainly one-sided conversation left me with the idea that although Kenneth sounded weaker, he still sounded much better than I had anticipated after receiving Dr. Ortiz’s e-mail and for just a moment, I reconsidered the idea of making the trip.  Thankfully, we stayed with our plans to go.

I had decided my uneasy feelings were just my imagination getting the best of me and so we left Wednesday afternoon for Managua in good spirits.  We went directly to Susanna’s house and unloaded the car and dropped Pixie off.   Susanna is always so gracious to let us stay with her now when we are in town and it is such a blessing to not have to worry about the trouble and expense of hotel accommodations.  We then headed out to do our Managua errands. 

Thursday morning, we stopped by the grocery store so we could get some fresh fruit to take with us to Kenneth and the family and I picked out all the things that I knew were his favorites…nice fresh bananas, apples, grapes, plums and limones for juice.   We also grabbed a Spiderman cake and a couple of books (one for Lindsey) as an early birthday present for Kenneth in case we couldn’t make it back the end of this month.

When we got to Danelia’s she told me that Kenneth was out back because it was so hot in the house (and it was brutally hot there Thursday).  We walked out back and Kenneth had his back to me, sitting in the rocker with pillows all around him.  I said hi to him as I walked around the side of the chair and could not believe what I saw. 

Kenneth was so terribly thin and his eyes were vacant…looking, but not really taking anything in and he was basically disengaged, although awake.  His cheeks were sunken in and his mouth had sores covering the inside of his lips.  He was bone thin…literally.  I could not believe how much he had deteriorated since we had seen him the last time we were there…which was a little over a month ago.  He seemed so exhausted that even holding his head up appeared to take such effort and his eyes kept closing although he wasn’t really sleeping.    

Kenneth had on a t-shirt and nothing else sitting with his knees bent so that his legs were up in the chair and a fan was just a foot away, blowing directly on him.  His groin area looked as though someone had poured scalding water on him.  Even through the thick white burn cream that was smeared all over the “burned” area, it was easy to see that he should be in terrible pain with this. 

When I asked her what had happened, Danelia explained that the doctor said that the combination of keeping him in the diapers all the time, his constant strong diarrhea (caused by his meds), the natural heat of sitting and not being able to get up and move around, the unbearable heat wave that had hit plus his zero immune system had provided the Perfect Storm, so to speak, for a horribly gaulded young man.   His skin is breaking down and more and more pressure sores are now starting to appear.  There was a small-fist-sized growth that was protruding from his chest with the skin stretched so tightly against it that the veins could be clearly seen.  Much of his skin seemed to be taking on a more translucent quality.  I couldn’t believe what I was seeing…the child I was looking at barely resembled the Kenneth we know. 

I wanted to burst in to tears at that moment.  I wanted to collapse in a heap and refuse to see what I was seeing.  I wanted to scream and to be angry at everyone and everything.  I wanted to scoop him up and smuggle him back to the States.  I want him strong and well and whole.  I want what I want.  God wants something different.  And so, I took a deep breath, glanced at Jim and saw on his face the same expression that I feared must have been on my own and realized this wasn’t what Danelia needed to see at the moment.  So, I pulled up a chair and sat down next to Kenneth, and began gently stroking his face and his arms. 

I kissed his forehead and asked how he was.  He whispered, “un poco major”…a little better.  There, hidden inside that broken, deteriorating shell, I found Kenneth.  He didn’t look better.  He didn’t sound better.  He certainly didn’t feel better…but even in his semi-shutdown state, he was positive.   That’s our boy…that’s the boy I have fallen in love with and the one I struggle to release to the One I know loves him even more than his family does, than we do.

I showed him his cake and one corner of his mouth turned up the tiniest bit.  I showed him the book we got him…he wasn’t even strong enough to hold it.  I then showed him the package that we had received for him from two very special little twin girls, Audrey and Taylor, who have been praying for Kenneth.  They had sent their pictures, drawings, a Hot Wheel truck and a card which I read and translated for him.  I showed him the part their mother, Jaclyn, had written and then where each of the girls had said that they loved him and were praying for him and had signed their names.  He couldn’t quite stay focused but I think he understood.   I know Danelia did.  I looked up and her eyes were filled with tears. 

We stayed for awhile and talked with Danelia.  That's when I found out that it was Lindsey that had answered the phone when I called the day before...which made so much more sense when I thought about it.  I had been having such a difficult time in trying to reconcile the strength that I had heard the day before with the weakness I could see before me.   

Lindsey was clingy and so I played with her, held her, snuggled with her (in that ridiculously oppressive heat) and kissed on her.  After awhile, she seemed content to watch the t.v. with its grainy, fuzzy picture along with Ezekiel, her cousin who is the same age and lives next door.  Kenneth would open his eyes periodically but it seemed that most of his efforts were concentrated on just being.  His breathing was rapid and labored.

Danelia told me all about their visit to the doctor the previous Friday…this is the visit where Dr. Ortiz had e-mailed me afterwards.  Danelia had called the doctor a few days before and told her about Kenneth’s “rash” in his groin area.  The doctor told her that since his appt. was in just a couple of days that they could wait until then. 

Arturo had taken off work to go with them that Friday.  They had a terrible time trying to get a taxi to agree to take them to the hospital…those who would, either wanted to charge them an exorbitant fare or to charge them an extra person charge for the wheelchair.  Seriously.

The rest of what I will share must be filtered through the knowledge that this is coming from a woman who is losing her child to a lengthy battle with cancer, who is more exhausted than any words could convey, who has had to deal with more challenges that have taken her far past the point that would have probably broken the rest of us and a woman who knows that she has no other recourse at this point than to watch her dearly loved son die.

Without going in to all the details, I will highlight what that last appointment was like for this family.  Although Dr. Ortiz is a very good oncologist, she is not good at comforting or consoling nor is she a believer in our God who cares for His children.  She and Danelia have butted heads from Day One and evidently, this last appointment was not much different. 

There were discussions about what the doctor perceived as a delay in seeking treatment for Kenneth’s latest skin condition.  Danelia’s response was that she had brought him in when directed and then he had to sit for four hours in a diaper that could not be changed before he was seen.  She reminded the doctor that it was not easy for them to get there.  She also reminded her that it would be much easier to just bring Kenneth there and leave him at the hospital but that is not what any of them want to do.  She loves her son and wants to take care of him and she believes she can do a better job of tending to his needs than a nurse who occasionally comes in to the room to check on whether his iv is through or not.  At the hospital, Danelia is still responsible for keeping Kenneth clean, feeding him, taking him to the bathroom plus mopping their own floor and cleaning their own room.  She would rather do all of that at home where she can get the help from other family members.

 There was a huge disagreement about the need for the family to consult with the psychologist.  Danelia and Arturo refused and refused to let the psychologist speak to Kenneth.  Their stance remains that they need someone who can provide spiritual guidance and not psycho-babble…I agree.  The medical professionals think that is a foolish pursuit…Danelia thinks that they’re the fools.  That discussion ended up with the psychologist becoming angry and leaving the doctor’s room and refusing to sign the paperwork that was necessary for Arturo to have for his work.  Childish behavior at best in my mind.  They finally came to an agreement that if Kenneth needed some sort of emergency treatment that could improve the quality of his remaining days, then they were to come to the hospital…if not, then they were to stay home.  So, future appointments are on an as needed basis. 

I would have thought that all of this would have been upsetting to Danelia, but she was probably stronger and more focused than I’ve seen her for some time.  She said that she did not want any more people speaking negativity in to her life or the life of Kenneth and that her faith was stronger than it has ever been.  She said that she knows God has a plan and that she has asked Him what she is to do and He has told her to stay firm in her faith.  She said that she still prays for a miracle but He has not answered that way…He has said that He sees her and He knows what they are facing.  And, she trusts Him. 

She then asked me what I thought she should do with Kenneth and I told her that whatever they decided, it had to be their decision and they had to be comfortable with it, regardless.  If Kenneth would rather be at home and that is what the family wants, then that’s what they should do.  I told her it didn’t matter what others may think that they had to do what was best for their family.  I have no doubt that Danelia knows that his time is limited…but she also knows that she wants to make this limited time count for as much as they can and they don’t feel like they can do that in the hospital.  So, for now, the decision is to keep him at home.

We discussed the new medications that he’s taking and she told me that she’s not supposed to put the disposable diapers back on him for now.  One of the neighbors gave her two, very thin used cotton diapers, one of which she was using under him and the other one was hung up to dry.  The fan that they had was a terrible fan and not moving hardly any air.             

After leaving them on Thursday, we made a quick trip to the Boer Market and we bought a dozen cloth diapers and a good oscillating floor fan which offered various speeds.  We also bought a large box of sterile gauze pads.  On Friday morning, we stopped back by Danelia’s on our way to Somoto.  Susanna had some donations left of non-sterile pads and packing material plus two tubes of the cream for his “burned” area so she sent those things with us, also.

Jim unloaded the items and then got back in the car to stay with Pixie while I went back to check on Kenneth.  Danelia was overcome with emotion when she saw what we had brought her…the tears started but she quickly gained control.  Her sister was there with her and was busy fanning Kenneth with a cloth to keep the flies off of him.  He was laying down on the bed that was moved outside and once again, had on only his t-shirt.  In that position, I was able to see much better, how terribly thin he had become.  He reminded me of pictures I have seen of starving children in Africa but he doesn’t even have the rounded tummy.  The bones in his back, his ribs and his shoulders made me think of the pictures I’ve seen of holocaust victims.  And I was reminded of Yamuleith. 

From that position, I was also able to observe his bottom area where the giant pressure wound still remains.  Danelia removed the pad to show me how much better it looked.  It was true that it wasn’t as deep as it had been at one time, but it was definitely larger around…and other areas were starting to be more evident.  It’s as though what little skin and under-lying tissue that he has left is just dissolving…he truly is wasting away.

I bent over and kissed his cheek and he gave me the weakest smile.  I told him I loved him and he smiled again and he closed his eyes, once again, going to that place he goes to when he shuts out the rest of us.  I didn’t stay long as Jim was waiting in the car but made Danelia promise to call me if there were any significant changes.  She tearfully nodded her head that she would.  I pressed some money in to her hand and told her that would help with making sure he had enough medication to keep him as comfortable as possible.  Again, she nodded her head.  When she hugged me good-bye, she thanked me for all of the things but most of all, for loving her son.  That did it and I began to cry.  I told her that they were like our family and that I loved her children as if they were our own grandchildren.  She said she knew that and that they know that, too.

And then we left.  It was a tearful trip home.  The tears have continued to come off and on since then.   I can’t seem to control them.  I can’t stand seeing Kenneth like this and a part of me is ready to let him go…and yet, the thought of not seeing him again in this life, is too painful to consider right now…but that time is coming and I believe it’s coming very quickly.  Just thinking about that coming day makes my chest constrict and hurt...and it makes the tears come again.    

I have posted several pictures for you.  You can see for yourself how much he has deteriorated in six weeks which is the time span between the two sets of pictures.  But, if you look really hard in to those apparently blank eyes, you can see the sweetest, kindest and most gentle of souls…and if you listen very carefully, you can hear him tell you that he’s fine. And he will be soon.