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Daniel's Story Chapter 9.

9. The day Daniel died

Thursday, August 17.
At first, in the morning when I enter the room where Daniel is in since yesterday I do not sense anything special, but I realize that a doctor is sitting at his bed. The monitor shows heart rate, blood pressure, all in the green. Then I see that Daniel is bleeding from the skin at his throat. I show it to Yuki. That means that the liver isn't functioning yet. The transfusions don't help. Then Ogawara sensei and Murakami sensei come in and tell us that he is not well. Ogawara sensei calls us to the counseling room. He tells us that Daniel is not in a good situation. His blood pressure dropped a few times last night, but the doctors could somehow stabilize it with medication. But the medication is fairly strong, and its effect is getting weaker and weaker. Slowly, very slowly, the truth sinks into my mind. "You mean that Daniel's heart is getting weaker".
"Yes, up to now we had no real problem with his heart itself, but it seems that the other organs had some effect on it." The thought sinks deeper still. "We think that we should stop using the medication. It is really strong, but its effect is getting weaker. If you agree, we will stop it."
I know that I have now to ask one question. The one question that I never wanted to ask. This one question that was with me for the last 10 years. This one brutal question which cuts down to my very existence. I know that my asking or not asking will have no effect on Daniel's life, but still I can't ask it. I sit, not being able to open my mouth. The answer is clear, why do I have to ask anyway? The doctor and the nurse are sitting there and waiting. "How many times have they already had to do this?", I think. Then, after the longest time, I open my mouth: "You mean, when we agree to stop the medication, then it will be today that......." I don't want to finish the sentence, and I know that I do not have to. "Yes, he will die today".
"How long will it take?"
"A few hours at most". I look at Yuki, she cries and tears run down my cheeks, too. The only thing I can do is to nod towards the doctor. "I am sorry", and I know that he is. All those years, in which he got to know Daniel. All what they tried, all the efforts to save his life. They fought their fight. They lost. How couldn't they be sorry? They leave us, Yuki and me, alone in the counseling room. After a while I decide to call Pastor Jerry and Yuki's mother Masako. I am on my way to the phone, when a nurse comes. "You have to come quickly." "Just  a second", I tell her and rush to the phone. Makiko-san is at the phone. Jerry isn't home. "Daniel is dying. I have to go back to him now." "Jerry is at the church. Do you want him to come?" "Yes, sure." and I hang up, running to Daniel's room. I see the parents of one of the babies in that room waiting outside. Doctors speak with them, asking them not to enter the room. Why can't we be in a single room? If the doctors knew that he would die, why had they bring him here? Without privacy, with people running by. But the doctors didn't know all this. They also were taken by surprise.
Yuki is at Daniel's side. The monitor shows a heart rate of 100, but it is getting lower. Very slowly getting lower. I look at Daniel, put my hands on his arm. This arm that I stroked so many times at home and during the many times in hospital. I put my hands on his forehead. The only prayer that comes over my lips is "God, have mercy on him, have mercy on him." Why can't I pray for a miracle? Why can't I command him to get up? Why can't I pray for healing, for a new heart? Heart rate 80, pressure below 100. I look at the big watch at the wall. 10:33. Yuki is stroking Daniel's arm, too. There is not much free skin left to stroke, bandages, infusions everywhere. Heart rate 60. That would be normal for an adult, I think, but it is deadly for Daniel. Amazing how regular it is. Heart rate 40. Suddenly something happens that I only knew from bad films. I have seen people 'die' in films. Either they die slowly, with a last calm breath, or they show this really pathetic last convulsion of the body before they sink back. I always thought that this only happens in bad films which need a dramatic and sentimental ending, but now Daniel shows the same reaction. His whole body contracts! He is deeply sedated. How can this be? A few moments, I am unable to estimate the time in between, a second time. A third time. Then, the monitor is not able to measure the heart rate, because it is too slow. Very very slowly it went below the 20 pulses per minute mark. Then finally, finally, after what was at most ten minutes, his heart stopped beating. Murakami sensei checks the iris reflex, and at 10:43 he tells us with a low voice "Yes, Daniel is dead." I sit there, having this feeling of unreality. I just watched my son dying! My own son died, just seconds ago. What can I do? What am I supposed to do? I take my hand from Daniel's forehead and take Yuki in my arm. She is now the one who needs me, not Daniel anymore. The doctors and nurses start to remove the drips and the connection to the oxygen supply. The tube comes out of the socket with the sound of releasing the air pressure. The doctor apologises for the suddenness and the noise, but I just think "So what? I do not care". After a while the doctor asks us to leave the room, since the nurses want to clean Daniel's body. We go back to the counseling room and are alone. We did not think that Daniel would die that quick. I even didn't have time to call Masako. I do it now and we agree that she and the kids should come. We hoped that the kids could see Daniel once more, but our wish was not fulfilled. But then, they should come now. After they arrive, the first remark of Yumi is "Now I am the oldest." I am not angry at her because of this. We just tell her in a quiet voice that she shouldn't say things like this. Well, who knows what is going on in the kid's heads? Maybe that is the best way they can cope with the situation. Something that they never have experienced before. There will be a time at which they will comprehend was going on. A time for grieving and sorrow will come. We just let things happen as they happen. Jerry, Morimoto and Makiko arrive. Only Jerry comes into the counseling room. I never felt a stronger desire to be hugged before. I do not check the time, but it must be after 11 a.m. The next hours pass by by doing many things. [The chronology does not matter, thus I describe them as I recall them.]
Soon afterwards the doctor aproaches us "What do you want to do from now on? We have a room in the basement for religous ceremonies, but it is only be used for Buddhist purposes. I know that you are Christians, thus I think you don't want to use it."
"No, certainly not" I reply.
"Then, if you want, you can take Daniel to your home in your own car." He continues. "Just let me prepare a document, just in case the police stop you and find a dead body in your car." A thought that is not without reason, I think. After all the tubes are removed from the body, we are allowed to wash it, something that is unthinkable in Germany. In Germany there is a big 'gap' or 'fear' to deal with the bodies of the deceased. Normally they are out of sight. Taking a corpse back home is unthinkable.
The doctors need some time to stop Daniel's nosebleeding. They apologise and apologize, but for me this doesn't matter that much. After a while a nurse gives us some towels and we start washing Daniel's arms, legs, back and belly. His body is still warm. He looks very peaceful, like being asleep. It looks like as if he died without pain. His eyes are closed and he has a hint of a smile around his lips. The color of his cheeks is pink. But his chest does not move with his regular breath. The skin over his ribs does not move with his heartbeat as I have seen so many times.  The skin between the ribs on the right side of his chest is lifeless. I do not know what to wash anymore. Isn't Daniel's body already clean enough? But I like the custom. It does not leave a distance between the deceased and the living. While we are still at Daniel's side, the nurse comes. We have to do some many little things. Go down to pay the last bill, go and get the car to the back door. I have to go down to to the reception counter, go up to the fifth floor, down again. I am so busy going to and fro that I do not know where Masako and the kids are. Going in and out of Daniel's room I see Yuki sitting at the bed. Somehow neither me nor Yuki can yet comprehend what our life will be from now on. We do not fully grasp the fact that Daniel is dead, nor are we aware of the implications. Somehow I am glad that I have so many errands to do. It keeps me from thinking too much about Daniel.
Suddenly Yuki asks me what we should do with Daniel's wheelchair. "Yes, I have to take it down to the car" I think, as I have done so many times. But then it slowly dawns in my mind that this is not what Yuki meant.  We do not need the wheelchair anymore! From now on we will never need it again. What shall we do with it, is a question that goes beyond everyday routine. From now many things will be not as usual; many things will need second thoughts. We decide that the wheelchair should be used in the hospital. We ask a nurse if they would like to keep it, and they happily accept our offer "We will use it in memory of Daniel", she said.
Gustavo and Pastor Jerry stay in the counseling and in the day-room. They bear with us, they are waiting, even though it is not clear when we will be able to leave. I tell Masako that she should take the kids home. Morimoto-sensei and Makiko already left, so I ask Jerry if he wants a ride in our car. When I come back to Daniel's room, Daniel's body is already put onto a smaller bed and ready to be taken out of the room. Somehow I do not like that they re-bedded Daniel while I wasn't there. A white sheet is over his face, and we start our small procession to the elevator. I can imagine what the other parents outside of the our room think, but I do not waste any thought. Nor do I seek any eye-contact. I just want to be left alone. We pass the elevator hall into the neighboring station. The nurses who see us coming bow their heads. "How many times does this happen on the 5th floor?" I think. "How many children leave this hospital that way?" "How many times do the nurses stop on their errands and lower their heads, not knowing what to say, and avoiding eye contact with the bereived parents?" I do not know, but I know that someday, I want to ask the doctors about that. All of us, Yuki, me, two doctors, a nurse and a hospital staff fit into the small elevator at the end of the neighboring station. Arriving on the first floor, Jerry waits for us. I drive the car in front of the exit, and put the air conditioning on full power. It is an unbelievably hot day. I recline the right hand side middle seat of our Odyssey. The doctors advised us to put Daniel's head higher that the body, in order to prevent bleeding from the nose. Very thoughtful of them, but I do not mind the least. I put Daniel's body in the car, Yuki takes the seat beside him, while Jerry sits in the front. I bow to the doctors and nurses, barely able to say "Thank you". The air conditioner is on full power.
Halfway home, I ask Jerry if I should take him to his home. I thought about letting him off close to his house and giving him money for a taxi ride for the last part. But Jerry says he wants to go directly to church. A thought comes up in my mind, but I do not say anything. A while after Jerry tells me that he wants me to take Daniel's body to the sanctuary. It will only take a little while and only he and me shall go upstairs. I agree, because this is just what I has been thinking just a minute ago. This shows me that these thoughts do not come from within our minds. This perfect agreement between Jerry and me is a sign to me that it is in Gods Will that we take Daniel once more to church. We arrive at church, and I take Daniel's body out of the car and enter the building. I feel relieved that nobody is waiting in the lobby. How many times did I carry Daniel on my back on the curved stairs to the second floor to the sanctuary. In the last weeks and months, he had to be carried nearly every Sunday morning to the second foor for the Sunday Service. What I did so many times while Daniel was alive, I now do the last time. He is as light, or as heavy, as usual. We place Daniel on the red carpet in front of the big golden wooden cross and suddenly I am overwhelmed with so much pain. I shout, I cry out. I bow my body over Daniel's. He is getting cold already. I stroke his forehead as I did so many times.
After I do not know many minutes I turn my head and speak to Jerry
"Jerry, do you know that two Sundays ago I came to the front after the service, during the prayer time and I kneeled down with my arms and hands streched forward as if I would carry a body?" He nods. "At that time, I had Daniel in my arms. I gave him to God, as I have done already many times in the past. Up to now, God has always given Daniel back to us. This time he has taken him into his glory."
"You know, when it is time to go home, it is time to go home", Jerry replies. After another few minutes where neither Jerry nor I speak much, I take Daniel back into my arms and we go slowly down. This time, Yasuko and Morimoto sensei are waiting in the lobby together with Yuki. Yasuko sees Daniel in my arms, and turns away, and starts crying. "It must be a terrible sight for her, too" I think. I can't greet her, my heart is too heavy, and slowly I take Daniel back into the car. Then we drive home, after Jerry promised us to come to our house in the afternoon.
Arriving, we do not see any neighbor on the road, which is good, I think. I carry Daniel inside and place him on a futon in our tatami room.
This is the first time the kids see Daniel. They come close, touch his cheeks and have a good look at him. They are very quiet, but they do not show much of emotions. How should they, if even for Yuki and me the fact that he is dead hasn't fully sunk in?
Yuki and I have to eat something, and we do, even though we have no appetite, I eat half a bowl of rice and some vegetables.
Around 5 pm Jerry, Makiko and Morimoto come. We speak about the timing and content of the wake and the funeral.
Yuki and I decide that two songs should be played by the worship team. One song immediately comes to my mind: "On eagles' wings". Daniel liked that song, and I feel that he is now already on eagles' wings, flying in the presence of God. Something that I always wanted for him while he was alive. I wanted him to be healed. I wanted him to be physically strong. I wanted him to have a feeling that he can fly with his body.

Lord I come to you, let my heart be changed,
renewed flowing from your grace that I found in you.
And Lord I've come to know the weaknesses I see in me
will be stripped away by the power of your love.

Hold me close, let your love surround me,
bring me near, hold me to your side.
And as I wait I'll rise up like the eagle
and I will soar with you, your spirit leads me on
in the power of your love.
The other song is one that Daniel liked very much, too:

My Jesus, my savior, Lord, there is none like you, all of my days
I want to praise the wonders of your mightly love.
My comfort, my shelter, tower of refuge and strength,
let every breath, all that I am, never cease to worship you.

Shout to the Lord, all the earth, let us sing.
Power and majesty, praise to the king.
Mountains bow down and the seas will roar at the sound of your name.
I sing for the joy at the work of your hands.
Forever I'll love you, forever I'll stand.
Nothing compares to the promise I have in you.
We also decide that the wake should be held the next day, and a funeral service the following day. My main concern is that in this summer heat Daniel's body will deteriorate quickly and I do not want people to see this. Thus we want to proceed as quick as possible.
One request I have is that Yasuko at the church write a bilingual notice of Daniel's death with an invitation to the wake and the funeral. Thus Jerry sits down and writes it in English. Then we fax it immediately to the church. Yasuko does a great job and prepares a note within two hours!
Then, the person with the casket comes. It is so small! Barely 1.5 meters long! Inside it is covered with white cloth and it also contains a white cusion and a blanket.
The man offeres to re-dress Daniel, but Yuki and I refuse. We do not want anybody to see the marks left by the many infusions and drains. His body is covered with bruises where the non-coagulating blood caused bleedings. The man lifts Daniel's arm and says that he is is already getting stiff. We say that we will try to re-dress Daniel and that we do not want anybody to have a look at Daniel's body. Yuki choose a short-sleeved shirt which fits neatly around Daniel's neck, so that the bleeding on his throat cannot be seen. When I take off Daniel's hospital nightgown I indeed find it difficult. I can't bend his ellbow, but finally ithe nightgown comes off. Good that the shirt is short-sleeved, so we can dress him without problems.
After we have finished Yuki and I put the body into the casket and we put dry-ice around his hips and besides his head. The person from the funeral service suggests that we put some pillows and old books under the casket, a suggestion that we follow and which was wise as we will see the next day.
During all this, we receive and make telephone calls. My university, my formewr Professor at Hokkaido university, the heart-group, Daniel's school, and so on.
The hardest telephone call to make I make at 4 pm. I call my father! It is now 9 a.m. in Germany and the secretary puts me through. I do not need many words to say. My last call was just yesterday. Somehow he knew what would happen. After a while I call my brother, too. I just have to tell him that something terrible has happened with Daniel, and he understands.

Already during the time Makiko, Jerry and Morimoto are in our house, people start coming. They all have a look at the open casket, and Yuki and I explain what has happened. Words do not come easy at first, but with more and more people coming, it gets easier. After everybody left, we go to bed, but find hardly peace to sleep.



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1. Chapter 1.

1. Introduction
((uploaded Nov 1, 2000 last update Dec 12, 2000)

2. The first months of his life

2.1. Daniel's birth
(uploaded Nov 27, 2000 last update Dec 12, 2000)

2.2. First Operation
(uploaded Nov 27, 2000 last update Dec 12, 2000)

2.3. On the normal pediatric station
(uploaded Nov 27, 2000 last update Dec 12, 2000)

2.4. Our church and the Heart-League
(uploaded Nov 27, 2000 last update Dec 12, 2000)

2.5. Life in Mainz
(uploaded Nov 27, 2000 last update Dec 12, 2000)

3. His first year

3.1. His first baptism
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

3.2. Christmas in hospital
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

3.3. Cramps
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

3.4. Second operation and first near-death
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

3.5. The decision to go to Japan
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

4. 1992-1993 in Sendai
(uploaded Apr. 24, 2001)

5. Daniel's School Days
(uploaded Jan. 24, 2003)

9. His death
(uploaded Mar 13, 2001 last update Mar 13, 2001)

10. The days after
(uploaded Mar 13, 2001 last update Mar 13, 2001)

11. A New Life
(uploaded Jan. 24, 2003)

12. Annotations

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