What I share here is for some other parent who might be going through this and who needs to know what I went through. It is very personal and hard to share, but if Chris’s death is to have some meaning, it is in the healing of others who go through this and need to know that they are not alone.
24th January, 1996.
I think I have accepted that I may be, for a while at least, here -- just taking care of Chris. I actually sat down and figured out what the channels are on the television. It drives me crazy having the television on all day and night. I’m not fond of it on a good day. What drives me even more crazy is not knowing what the channels are when I want to watch something. NO MORE!!! I have figured them out and made a list.
I should be sleeping -- I certainly haven’t had enough the last few weeks. Chris is sleeping pretty soundly right now. He is so very thin. It breaks my heart to look at him. Perhaps it is because I am his mother, but even though he has lost so much weight, he is still so beautiful to me. When he rests and his eyes close, the length of his lashes on his cheeks still astounds me. The darkness and light that plays within his eyes takes my breath away. I love him so dearly.
This watching and waiting takes me back almost 24 years to another time and place, another vigil. I couldn’t believe how lovely he was then, my baby, and, new mother that I was, I worried that if I fell asleep something would happen to him. I would watch his chest rise and fall and hold my breath until it moved again. Now I keep that same vigil, but now I wonder if perhaps I should pray for stillness, for the relief he has surely earned.
The vigil back then was filled with hope for his future. What would he be? How would his life turn out? My heart beat with a fierce desire to protect him from all the things the world might do.
Now I know how his life turned out... it wasn’t quite what I planned. I know it is too late to change the past, but if I had only been more on the watch, if I had taken better care, perhaps he wouldn’t be where he is today. I feel like the person who had the winning lottery ticket for just a moment before it fell from his fingers. For a brief period in time, a multi-millionaire. But the wealth slipped from his grasp because he did not hold on tightly enough.
AIDS ... I remember hearing it for the first time on the news. I never thought, for one minute, that its shadow would block the sun from my life. The set on the television was shiny, glossy. What a difference to the darkness the disease brings.
Why didn’t I see what B was? Why didn’t I suspect what he was doing to Chris? I try not to judge him only by the side of him that destroyed Chris. I remember good things about him, too; but it’s hard not to let the sum of his life be the destruction of my heart’s love. So much of the time I think I’ve forgiven him for what he did -- then I look at Chris and wish I could get my hands on him and cause him great pain and suffering.
Does it sound like I’m on a roller coaster? That’s because I am! One moment I feel strong and able to deal with things, other times I wonder if I can breathe without crying.
Monday, January 29th, 1996.
These days have been so very hard. Chris has been deteriorating so quickly. Every day I wonder if its his last. I don’t see how he could last much longer, yet he does. It could be the tenacity of the human spirit, it could be the fear of what comes after., who knows. He is so ready to go, just to have this done with. We are ready, too. There will be relief when it’s over...relief that the pain is gone...relief that the endless waiting is done with and we are no longer counting breaths, or counting the endless space between them. From day to day I am sure we must be done and that -- one more breath, one more hour and we are done with willing him to live, willing him to leave. Sam slept in the chair last night and I slept on the couch. It was a deep and heavy sleep, much needed. When I woke I stood at the door of the room and watched Christopher’s still form in the half-darkness. Did I pray for a breath? Did I pray for the stillness to continue? I don’t know ... all I know is that it became my time again to watch, and to wait.
But there was more opportunity for service this morning. Two agonizing changes where my loving hand tender hands won an opportunity to cause him pain. Where the endless apologetic conversation took place one more time. At last, in a morphine - induced haze, he drifted off into the half-world that has become his way of marking time. I am here, alone in a sea of wondering and watching. When, why, how much longer.
It is okay to want my son to die? Should I be on my knees praying for a healing for him? I wonder sometimes if I had had more faith -- if I had prayed more ... all the ifs that may have changed his life. If only I had pursued my concerns about Chris earlier ... this death was so unnecessary, his agony so undeserved.
Without God I could not get through this... Without my hope of heaven for my beloved child, I would have never survived this long. God comforts me when the agony is too great. He has placed people around to help us in situations like this. I am so glad Brian came when he did on Saturday night. I will never forget the miracle of his music and how it touched Christopher’s heart. I am glad Pastor was there on Sunday when I needed him. The trouble I was having dealing with the issues that were raised Saturday was too great. I could not have managed without his counsel. My beloved and loving mother ... how very fortunate I am that she is handling everything so I don’t have it weighing on me.
I am playing soft and gentle worship music as I sit in the stillness of the early morning. Outside the sounds of a continuing world work their way in here. The world has not ceased, waiting in hushed silence for my son’s life to stop. It does not pause in muted agony for his last heartbeat to mark the end of his sorrow. My world exists in the limbo between life and death - outside - out there, life goes on.
Pastor’s sermon a few weeks ago spoke of the agony of brightness when you wake in the darkness and need to turn on the light to get ready for work. How agonizing and painful it is to experience that brilliance until the eyes adjust.
Is this suffering a part of Christopher’s adjustment to heaven? Is this part of the transition between here and there? Will heaven seem so much more precious because the suffering has been so great on earth.
My head aches and aches. The hours and hours here in the chair, the countless cigarettes I have lit and held for my angel. The bending , the lifting ... they have taken their toll on my back. I am exhausted. Although I did sleep last night, I would welcome a soft pillow and more hours of sweet rest. I feel petty and silly complaining about such small aches and pains when the child who suffers so close to me speaks not a word of complaint. Should I ever go through anything like this, I would pray for his fortitude. His serene face and suffering eyes will always be a reminder of bravery for me.
It continues, the wait, the vigil. From time to time he reaches out his hand to touch me. Does he try to hold on to an earthly world, or does he just need to know he is not alone in the suffering ... The worship music washes over me gently, reminding me that I am not alone in this. The Lord Jesus is here. The Almighty God suffered the same heartache as I suffer now. His Son died nailed to the cross. In Christ’s agony did the omnipotent God ask Himself - how much longer will my child suffer? Jesus experienced the agony of waiting in Gethsemane as he sweat blood in his desperation. Jesus knew what he had to face, yet he still chose to do it for us. Seeing Chris hurt the way he does now and knowing that Jesus still chose to do that for us moves me so much. God’s heart has broken for His people since the dawn of time. His suffering is yet greater than this because He suffers for the whole human race.
What was the sound of Chris’s laughter like? How did his voice sound when it was not whispering in pain? What did his eyes look like when they were not shadowed by suffering?
Please, God, grant me the memories of a healthy, happy Chris. Remind me what things were like before November 1989 - before I knew. Give me back a world where the heartbreak Christopher has suffered is not the measure of my days. Grant me fresh and joyful memories of the boy I raised. Let me hear his voice in my heart. Let me preserve good times and put this suffering away for good. Let this be a springboard to a world that exists in sharp and pleasing contrast to this moment. Let his agony remind me how precious life is. Let me appreciate each of my children and waste no more time with them. Let me create a wealth of beautiful memories for them and filling their lives with extraordinary joy.
“Don’t you know it’s time to praise the Lord, in the sanctuary of His Holy Spirit..So set your mind on Him and let your praise begin and the GLORY of the lord will fill this place.”
In the SANCTUARY of His Holy Spirit! Sanctuary - a safe place, a place where we are protected. Under the shadow of His Wing. At the close of the day. I am not alone in this. I may have to suffer through this but with the protection of my Father in Heaven.
Yet, knowing this, I still count the breaths.. How very human we are in our spirituality! I wish there was a life meter that shows how much longer he has. A timer that runs backwards. This process is somewhat akin to giving birth -- the wanting of the child to come from that world to this...the clock watching...the wondering how much longer the pain must be endured. it is very much like the night he was born ... only the agony is his now, not mine to bear.
Am I over the tears?/ I feel no profound sorrow at this moment as I keep this deathbed vigil. The overwhelming tears that flood my soul from time to time are no longer present. I am in a place of tranquillity at this point. The sweet sounds of praise help me. Perhaps the worst is over and I will be strong from here on out. Not strong on the surface, but strong from the heart. Like the gold, is melted before it is minted...I need that strength now and I need my heart to be joyful in this transition - not brokenhearted for my own sake.
The vigil continues...he moves from time to time, his breathing is shallow, but the breaths are frequent. I can hear them from where I still. “In His Time” what a lovely reminder for me. Than you, Lord, for reminding me that this will happen in your time, now mine and no one else’s. This is your process, Lord, taking him from this world unto yours. I will welcome that time when it comes, my Lord, but for now I will be content to share the air he breathes and to be very happy for the time to come to terms with losing my child. I rest here, secure in the knowledge of your Grace and sure that Chris comes to you, Lord. I thank You for the nights where you gave me the strength to remind him of you, and to remind him that he heads toward heaven and the light of your Glory.
I rest here in peace, Heavenly Father, secure in the memory of a small boy reciting Luke 2 at Christmastime and of a young man, just days ago, remembering those same words and reciting them along with Charles Ingles in “Little House on the Prairie.” Thank you for reminding me that “If you train a child in the way of the Lord, when he is old, he will not depart from it.” Thank you for reminding me to look to the hills from whence cometh my help. Thank You, Lord, that Chris watched me closely as I recited Psalm 23 to him. Thank you that the words came from the depths of my heart, “Yea, though I walk through the valley of the shadow of death, I will fear no evil for THOU art with me.” Chris walks in the valley of the shadow of death, but Thou Art with Him, Heavenly Lord. Keep and protect him, cradle him softly as he lies in these last moments on earth. Breath the gentle breath of God on him, Father and give him peace. Thank You, Lord Jesus, for being with us now and reminding us that life is a short and brief moment on the face of time. What we do here, what we suffer here is nothing it will be over soon and we shall dwell in your presence forever, Father, let me always remember this moments with him and with YOU.
I have read to him from the Psalms, Psalms of comfort, Psalms of Praise, Psalms of Trust. I read to him that those who sow in sorrow shall reap in joy. I read and re-read Psalm 23, Psalm 91 and Psalm 121. They are a great blessing and comfort to me also. For me, I also read in 2 Kings 4:8-37 about Elisha raising the Shunammite woman’s son. Not that I expect Elisha to come along and raise Chris ... no it is her way I wish to learn. What did she say in absolute trust ... “It is well.” She trusted in God for all things and asked nothing. “It is well with my soul...” It is, Lord, it is well with my soul. Grant me that remembrance when sorrow walks with me. Remind me that you are there with me and that it is well with my soul.
God will give me beauty for ashes, the oil of joy for mourning and the garment of praise for the spirit of heaviness.
Tuesday, 30th January, 1996
And so we are here, waiting on the Lord. Chris was up after my last entry. He chain smokes (and of course I lit and held the cigarettes) and he wanted food. I gave him cereal, then later he demanded ice-cream - and when he wanted it, he wanted it right away! Surprisingly enough, the four scoops were not quite enough ... he wanted more. He also wanted Carl’s Junior. We are giving him whatever he wants. At some point during this foodfest, he let out a very loud belch. “What do you say,” I asked him. He replied, “Excuse me!” “That’s right,” I said, “Just remember that illness is no excuse for bad manners.” He gave me the famous “LOOK!”
The nurse came today and inserted a catheter. He says it burns, but at least he’s not suffering from the “I want to go” syndrome. We’ll see. If it’s better by morning then we’ll go with this, if not, then we’ll just take it out and manage as best as we can. He deals with everything with such fortitude. I am filled with admiration.
Moani came over again to see Chris. She loves him so much and he loves to have her here. She is good spiritual encouragement for him, too. I find her a well of strength and cheer. What a love she is. It is hard some days as I pray for Christopher’s salvation. I know that it is all so alien to Sam and I feel awkward playing praise music all the time and reading the Bible to Chris. Sam doesn’t know the side of Chris that really loves the Lord. Sam doesn’t hear Chris singing the praise songs and reciting the Psalms with me, so he doesn’t see the good it does Chris. I wish Sam could see the peace in his heart as he remembers the hope of heaven. Christopher’s soul is very important to me. I have often said that I could lose Chris to heaven. I could bear the pain of losing him if I could rest in the assurance that he was in heaven. Without that comfort, I could understand the nature of Hell, because my life, day in and day out would be in the awareness that Chris was lost forever. Indeed, the constant pain that my baby suffers is a daily reminder of what the Lord is saving us from.
Once again I sit next to him, loving him, praying for peace for him. I trust in God’s timing. Sometimes these last days, last hours, last moments are the most precious of all. Moani, Sam and I have laughed with him and shed tears over him. Chris smiles from time to time. It is just a shadow of his smile, a glimpse of a world that used to exist. His beautiful dimples are still there, just lines now there is no fat to puff them up, but they are there. What a gift to us that in all he suffers he gives us sweetness. My darling boy, how I will miss you.
For a while he was a little less than lucid. He wanted to know where he was. He was afraid we had taken him to a hospital and he was in a hospital room. Then he wanted to know how the bed got in the room. I just said “THEY did it.” I never explained who “THEY” were, but that’s okay. he didn’t ask. I had hoped that he would remain less than lucid, that the knowledge of what was to come would no longer be a part of his existence. That was not to be, though, and stark reality once more became a part of his life.
I have kept watch this night. I still count each precious breath. I cannot help it. The smoke has given me asthma attacks again. In the tightness and shortness of breath I can feel a touch of what he feels all the time. How can he bear it, I could not.
I am so grateful my Moani has stayed. She and I talked for hours last night. I love her so much. In these last few years I have seen her grow from a little girl to a woman. I am so impressed with her. I loved the little girl, I love and respect the young woman.
What can I say. The hours move on. I am grateful for all the special moments that we have shared. Each time I prayed for his deliverance from pain, God taught me that there were more moments to be shared. Each time he reaches up and strokes my face, softly, gently, he gives me a memory. Each time he says he loves me, he gives me a memory. We have said so much, spoken of so much since Saturday. I am so glad he made it through today.
Judy and Mable are on their way over to visit. He does not have much to give them, not even much conversation, but he is so happy they are coming.
Moani wants to dance for Chris at the memorial service, a farewell hula. I will ask Pastor.
Wednesday, January 31st
The vigil is no longer tranquil. It is fraught with noise, confusion and great pain. Chris desires to listen to jangly music and the tranquillity of praise is no longer their for me. We have increased the morphine at the rate Shula suggested. He cannot rest and is not at all sedated. I want to be alone with him in the night, but there are so many people here. David is here to help, Chris has really enjoyed having him. I thank God that they are close, despite my earlier fears. There is a warmth and a bond that is so obvious and present. Yesterday, Mable and Judy were here. Then Moani, Charlie and Kathy. Today Nana came over with David. Later Judy came over again, then Rand and James came by. I feel glad that everyone is coming to see him when he has asked for them. Sam is going to pick up Paul soon. Moani and Charlie will be over again. Sam says Donna is coming, too. Chris will like that. I think my brother is coming tomorrow.
I am feeling somewhat low in spirits. It’s losing Chris, I know, but there are other things. Chris wants so badly for it to be over. I know he wants us to help the process along. I talked to him at length today and explained why we couldn’t do that. I am sure that if Sam were with him for a while alone, they would manage it between them. I have shared some very close moments with him today. He often reaches up just to stroke my face, so softly, so gently. Oh my baby, I wish I could hold you so tightly just once more. Why do even my hugs cause so much pain. The moments we shared were special and precious. As long as I have him, we can continue to share those moments.
I would be so happy if I could do something to help him. I know I can’t. What can I learn through this process? Has it to do with control? At the end of the day, just how much control do I have - None!
Also I think I miss the praise music. I drew a great deal of strength from it. Now it is gone I feel less tranquil, less serene. I know that God doesn’t exist in music, but the music was a constant reminder of His comfort.
We are all watching TV with him. David, Moani, Chris and I. Chris knows what time all the shows are on and what channels. The morphine certainly hasn’t affected that. David has been here all day. He is really good with Chris. He’s been quiet and peaceful here. I have trained Chris to call me “Oh Great One!” and to tell me how beautiful I am at frequent intervals. Who says that morphine is not a good thing! I think I may try morphine on the other children and they too can be trained to say that I am beautiful and call me “Oh Great One!”
My poor baby... he’s finally sleeping. I am afraid. Lord, isn’t he ready to come home now. He’s your child, your sweet boy. Couldn’t you take him home and stop the pain, the agony, the suffering. Hasn’t he learned all there is here? Sweet Jesus, haven’t we watched him hurt enough?
I know we wait on Your will, my Lord, there is so much we don’t know. You still have something here he needs to complete, Jesus. He would be with you now if all were finished here. I pray for it to be finished soon and he can come home to you. You will give him his new body, free, free from pain.
Thank You, Lord, for giving me the certainty that it is all in your time and your will. Without that certainty my waking hours would be filled with immeasurable pain, watching him hurt so. Instead, I can place him in Your arms, Lord, and know that he is going to you. The joys of heaven will seem so much greater in comparison to this daily hell he suffers now. He hurts so much, Lord. He wants me to sit close by and touch him and hold is hand. How I treasure the fact that I am needed, that just having me here is a comfort to him. I am so glad I can be of some value to him. I can only do small things, but I do them with great love.
He just jumped and said he felt an electric shock running all the way through his body. I wonder at these things. Are they a portent of the end? I anticipate his last moments with trepidation and hope. The hope that it comes soon, the fear of the moment when a hole is left in my heart forever.
February 1st, 1996
The vigil continues. The morphine is pumped up to 600 and he is still not at all sedated. I crave sleep and rest for him. Just a little oblivion, Lord, to shield him for a short time from his hurt, just a few hours rest.
Paul came back here with Sam last night. He sat with Chris most of the night. Chris asked for me at 2 and again at 4. I stayed with him through the bad spells and have been here since. I am in the chair that reclines. Paul is by Chris, holding the cigarettes, talking about music and handwriting. Paul is saying that his writing is much better than it was in school. Chris’s handwriting was his pride. How sad that he can no longer write and that lovely writing is gone forever.
The spells seem to be coming more often and they are more severe. I think it will be over soon. He grins and bears it, but I can tell he hurts. Mike says we can bump up the morphine even more, in 200 increments per hour and see how that goes. Lord Jesus, spare him soon.
February 1st, 1996
The Lord took my baby home at 10:29 a.m. this morning. His passing was not easy, but at the end was such peace. He smiled up to his last minute. Moani was there and between his last two convulsions, he pointed to his dimple and winked at her and gave her one last, precious, beautiful smile. He had always teased her that he had the dimples and she didn’t. At the moment he left this world and entered Heaven, God caused Amazing Grace to start playing on my C.D. It was not a few minutes later, but at the very second. This was the assurance I needed that Chris was where he needed to be. I thank you, Jesus, for that. I will never cease to thank God for that assurance. He knew my heart needed to know that.
The memories I wish to keep from this day are few. I remember Shula being on the phone when I needed her. I will hold Moani’s strength in my heart forever. She stayed with him to the end, fighting for his faith. Dr. Z called just minutes after he died. He was so kind and compassionate.
Sam, David, Paul, Moani and I were at the house when Chris died. Only Moani and I were with him at the time. It was better that way. My brother, David, arrived shortly after Chris died. He was on his way to see him. Larry, Sam’s dad, left work the minute he knew and came home and cried like a baby. Donna and Jo, Sam’s sisters, came right away. What wonderful, what special people to help celebrate his new beginning.
The people from the mortuary were so kind and gentle. I thank God for that choice and that they lived up to my hopes.
But at the end of the day, only one thing really matters. When we are stripped of our dignity and all our worldly possessions, the only thing that matters is our relationship with God. Wealth could not have saved Chris from this, position and status could not have saved him. We are all reduced to the same level at the moment of death. We are shown through this, so very clearly, what God saves us from.
February 4th, 1996
The Lord has carried me through these days. Pastor has been there whenever I needed him. My dear husband has read me to sleep with the Psalms at night. Friends and family have called and been here for me.
Barbara brought over a cake and a ham. She reminded me how often Chris used to bake brownies. He would bring her over giant ones. He often went over to talk to her when she was gardening and to play with Brenda.
Perhaps the memories will come back through the kindness and love of friends. I am so lonely for my baby. I have not cried much, except once on the phone to Pastor. When will the tears flow and stop the tightness and hurt inside of me?
February 8th, 1996
It has been just a week since he died. I cannot believe he is gone from me, I cannot believe I don’t have him anymore. I feel as though I am drifting in a haze. Today was the day that I was supposed to pick him up from the mortuary. They said he was not ready, and would not be until tomorrow. This is the most traumatic thing for me. Until he is picked up, until that is no longer looming over me, then I cannot rest. I need that step to be completed so I can get on with my life. But then I wonder - will I ever just get on with my life. There is much to be said for a quick funeral and having everything done with really quickly. Then you just have to pick up the pieces and go on. I still have to get my Chris home, then there are several weeks until the service, and then until May 10th for the scattering. There is such a cloud hanging over my life.
I cannot describe the odd feelings I have, as though I am waiting for something to happen, for something to change, for something to get better. I need to pick and and move on, but instead, there is a feeling I need to wait.
I don’t feel like doing much of anything. I am suffering from the blahs or the blues or something. I just want to sit, but find sitting makes me restless, but there’s nothing I want to do.
Soon, please, Lord. Make it soon. The rainbows dance through the prisms as a reminder of the covenant you have made with your people. I am your child and a child of light and a child of the promise. Bring the garmet of praise for my spirit of heaviness. Let me be assured of your presence always. I love you, Lord and I am here, waiting for you to touch me and make me whole again.