On Death and Dying
Denial
Anger
Bargaining
Depression
Acceptance
The stages of grief or of death and dying were articulated by Elizabeth Kubler-Ross in her book On Death and Dying. As college students, my husband and I read and discussed this book, then left the knowledge of those stages on a shelf in our youth. Being young and seeing the world as a place of wonder and endless possibilities, we didn't think much about Kubler-Ross's work. Years went by and the truths in that book became our experience. Time changes things, becomes the great equalizer. Eventually we all have to face grief, loss, and death.
Today my husband walks with his patients and their families through those stages on a daily basis. Dying has become part and parcel of our world. We interact with those going through the immediate experience, we watch it day to day as our son slowly succumbs to HD.
After the blood test, and before the results were shared with us, Kenny and I hoped that Lacy would be negative. He had overcome so much in his short life. Lacy has had to work hard for every step forward. We had to be the parents who demanded that he learn to function in the real world, and not use his disability as an excuse to misbehave or have bad manners. He rose to every challenge we set in front of him. It can't be we'd say to each other. That would be too much...
Of course, it was true. We didn't scream and stomp, no tearing of clothing or gnashing of teeth. Just a sinking feeling and repeated phrase He doesn't deserve this. Our anger did not bubble over but rather dripped around the edges of the carefully capped jar of emotions. Almost contained, but not quite...
The bargaining never really hit its stride. What was the use? How could anything be enough of an exchange to make any difference? But depression: Debilitating. The depression and sadness were relentless. I cried at home, at work, in church - and at all the places in between. Kenny began to look like he carried the world on his shoulders. We endured one of the worst few weeks of our lives during the November and December of 2011. We were exhausted and sad; we missed the interaction we used to have with Lacy. We missed our lighthearted son. We missed life we had settled into in the last few years.
This Christmas Day, when we had a wonderful and meaningful morning with Lacy and his friends at LifeStyles, the experience lightened our hearts, and brought us to a place of acceptance. We were able to see how God has again lead us to a place of peace. He has walked with us through the horrible storm; now, we are able to sit back and relax, enjoying the beauty of the day we have been given. We are on a sailboat in a peaceful ocean, accepting the changes in our lives, and floating along. Things will change again, and we will walk through new grief, but for now the first storm has passed.
I find myself reading and re-reading Psalm 139. It is one of my favorites. There is pain and peace expressed in that Psalm. I find hope in the understanding that God is with us, always there, no matter how dark the night, how painful the loss:
What does it mean to live in acceptance? It doesn't mean we feel alright with what is happening. We will never feel "OK" about Lacy's struggle and what has been lost to us. It is just the new norm. Our lives have been forever changed, and we will continue to readjust as we walk this road.
Anger
Bargaining
Depression
Acceptance
The stages of grief or of death and dying were articulated by Elizabeth Kubler-Ross in her book On Death and Dying. As college students, my husband and I read and discussed this book, then left the knowledge of those stages on a shelf in our youth. Being young and seeing the world as a place of wonder and endless possibilities, we didn't think much about Kubler-Ross's work. Years went by and the truths in that book became our experience. Time changes things, becomes the great equalizer. Eventually we all have to face grief, loss, and death.
Today my husband walks with his patients and their families through those stages on a daily basis. Dying has become part and parcel of our world. We interact with those going through the immediate experience, we watch it day to day as our son slowly succumbs to HD.
After the blood test, and before the results were shared with us, Kenny and I hoped that Lacy would be negative. He had overcome so much in his short life. Lacy has had to work hard for every step forward. We had to be the parents who demanded that he learn to function in the real world, and not use his disability as an excuse to misbehave or have bad manners. He rose to every challenge we set in front of him. It can't be we'd say to each other. That would be too much...
Of course, it was true. We didn't scream and stomp, no tearing of clothing or gnashing of teeth. Just a sinking feeling and repeated phrase He doesn't deserve this. Our anger did not bubble over but rather dripped around the edges of the carefully capped jar of emotions. Almost contained, but not quite...
The bargaining never really hit its stride. What was the use? How could anything be enough of an exchange to make any difference? But depression: Debilitating. The depression and sadness were relentless. I cried at home, at work, in church - and at all the places in between. Kenny began to look like he carried the world on his shoulders. We endured one of the worst few weeks of our lives during the November and December of 2011. We were exhausted and sad; we missed the interaction we used to have with Lacy. We missed our lighthearted son. We missed life we had settled into in the last few years.
This Christmas Day, when we had a wonderful and meaningful morning with Lacy and his friends at LifeStyles, the experience lightened our hearts, and brought us to a place of acceptance. We were able to see how God has again lead us to a place of peace. He has walked with us through the horrible storm; now, we are able to sit back and relax, enjoying the beauty of the day we have been given. We are on a sailboat in a peaceful ocean, accepting the changes in our lives, and floating along. Things will change again, and we will walk through new grief, but for now the first storm has passed.
I find myself reading and re-reading Psalm 139. It is one of my favorites. There is pain and peace expressed in that Psalm. I find hope in the understanding that God is with us, always there, no matter how dark the night, how painful the loss:
Psalm 139:7-12
English Standard Version (ESV)
7 Where shall I go from your Spirit?
Or where shall I flee from your presence?
8 If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
9 If I take the wings of the morning
and dwell in the uttermost parts of the sea,
10 even there your hand shall lead me,
and your right hand shall hold me.
11 If I say, “Surely the darkness shall cover me,
and the light about me be night,”
12 even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.
Or where shall I flee from your presence?
8 If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
9 If I take the wings of the morning
and dwell in the uttermost parts of the sea,
10 even there your hand shall lead me,
and your right hand shall hold me.
11 If I say, “Surely the darkness shall cover me,
and the light about me be night,”
12 even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.
What does it mean to live in acceptance? It doesn't mean we feel alright with what is happening. We will never feel "OK" about Lacy's struggle and what has been lost to us. It is just the new norm. Our lives have been forever changed, and we will continue to readjust as we walk this road.
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