Ted's cousin, Christopher Jones and his wife, Natalie, are loving one of their 3 sons up until the moment he passes on to the next life...Mitchell has a rare form of Muscular Dystrophy and his heart and organs are failing. He is 10 years old. We happen to live right down the street from them now that we live in Herriman. Nick plays basketball and lacrosse with this sweet boy's big brother. We have been blessed to know them and read their poignant postings about their son. Here is the latest:
JOURNAL ENTRY:
There sits on my dresser two pieces of paper, carefully folded, with hand-written instructions: one is for a mortuary, the second for a cemetery to purchase a piece of property I would give my life to not buy. I walk by these sheets of paper every morning of every day … I try to ignore them but in the back of my mind they are always there … waiting for me to open them. I dread that day.
On the other side of my home is my sweet son who looks to his parents for safety and protection. He trusts and has confidence that under our care all will be well with him. As a parent there is no greater anguish than to look your child in the eyes and know there is nothing you can do to save him.
Locked in our medicine cabinet are powerful medicines that, when the time comes, will help suppress the pain and discomfort of dying. Already Mitchell is showing signs that shadow of death is near and it hurts so badly to see. But for now, he is happy. He feels loved. And he knows that all of you are offering your love and support to him and that means so much to him. We are convinced it is the heartfelt prayers of thousands of great people [all of you] who have allowed us a little more time with our son. Thank you! Mitchell has defied what medical experts thought would happen. But the hour is at hand. We don’t know when, but we sense time is running out. We hope and pray we have a few more days with him where he is happy and functional.
My daughter took this impromptu photo of Mitchell and me last Sunday. Mitchell places a high premium on physical affection. The touch of a hand, the burrowing of his forehead into my chest, or the soft embrace means so much to him. Affection is as much food to his heart and soul as actual food is to his body. This evening as I held him, I felt his foot and legs that were cold as ice and my heart sank. I will miss his touch. But between now and the time he leaves I will give him all the loves and snuggles he can handle, and more.
Preparing for the death of a child is bewildering on so many levels. And there is perhaps no more complex form of death to manage. Firstly we grieve, as only parents who have lost (or are loosing) a child can understand. And that grief is overwhelming and utterly exhausting at times. Then our spouse needs support, then our young children … each coping in their own complex way … they also need love and support. And of course, there is sweet Mitchell, very much in need of comfort … even though many times we would rather leave the room and weep.
This prolonged goodbye offers us an advantage, but at a price. We have time to do and say the things we want to do, but the emotional price is very high and taxing. If he were in a coma, we wouldn't really need to say goodbye .... at least in a communicative sense. It would be a painful, but one-sided conversation. Letting go would be easier because part of him would already be gone.
But today, Mitchell is very much here. We can talk to him, joke with him, see him smile, make plans, and enjoy life ... even as limited as his life is - it is rich and rewarding. So to have a certain knowledge that death is imminent, in contrast to some form of normal … that is exceedingly difficult.
I wish I could invent some kind of ointment for the soul – that could numb the pain and sorrow of loss or heartache. But a man-made ointment is both illusory and nowhere to be found (at least by earthly means). But if we approach our challenges with divine help, there can be spiritual advantages to be found in adversity, if we allow ourselves to see and hear what we must learn.
When the time is right, and after he has passed, we will share some fascinating events while on Mitchell’s Journey that have stirred our souls. Some have lamented while seeing our sweet son suffer “where is God in all this?” … and we can say in all confidence God is here in the midst of our pain today, and He has shown profound, undeniable tender mercies all along Mitchell’s Journey … and He will continue be here long after this storm passes. This we know. As we have been prayerful and watchful we have recognized [often in retrospect] that even the most mundane aspects of our lives fell into place like a beautiful, celestial symphony of tender mercies and heavenly direction. Sometimes in our sorrow we are tempted to feel alone, but looking back, we recognize we were never really alone. I believe that in our grief we are meant to feel alone in order that we might humble ourselves to talk to God and seek an understanding that defies mortal senses.
While hurting, we are grateful.
There sits on my dresser two pieces of paper, carefully folded, with hand-written instructions: one is for a mortuary, the second for a cemetery to purchase a piece of property I would give my life to not buy. I walk by these sheets of paper every morning of every day … I try to ignore them but in the back of my mind they are always there … waiting for me to open them. I dread that day.
On the other side of my home is my sweet son who looks to his parents for safety and protection. He trusts and has confidence that under our care all will be well with him. As a parent there is no greater anguish than to look your child in the eyes and know there is nothing you can do to save him.
Locked in our medicine cabinet are powerful medicines that, when the time comes, will help suppress the pain and discomfort of dying. Already Mitchell is showing signs that shadow of death is near and it hurts so badly to see. But for now, he is happy. He feels loved. And he knows that all of you are offering your love and support to him and that means so much to him. We are convinced it is the heartfelt prayers of thousands of great people [all of you] who have allowed us a little more time with our son. Thank you! Mitchell has defied what medical experts thought would happen. But the hour is at hand. We don’t know when, but we sense time is running out. We hope and pray we have a few more days with him where he is happy and functional.
My daughter took this impromptu photo of Mitchell and me last Sunday. Mitchell places a high premium on physical affection. The touch of a hand, the burrowing of his forehead into my chest, or the soft embrace means so much to him. Affection is as much food to his heart and soul as actual food is to his body. This evening as I held him, I felt his foot and legs that were cold as ice and my heart sank. I will miss his touch. But between now and the time he leaves I will give him all the loves and snuggles he can handle, and more.
Preparing for the death of a child is bewildering on so many levels. And there is perhaps no more complex form of death to manage. Firstly we grieve, as only parents who have lost (or are loosing) a child can understand. And that grief is overwhelming and utterly exhausting at times. Then our spouse needs support, then our young children … each coping in their own complex way … they also need love and support. And of course, there is sweet Mitchell, very much in need of comfort … even though many times we would rather leave the room and weep.
This prolonged goodbye offers us an advantage, but at a price. We have time to do and say the things we want to do, but the emotional price is very high and taxing. If he were in a coma, we wouldn't really need to say goodbye .... at least in a communicative sense. It would be a painful, but one-sided conversation. Letting go would be easier because part of him would already be gone.
But today, Mitchell is very much here. We can talk to him, joke with him, see him smile, make plans, and enjoy life ... even as limited as his life is - it is rich and rewarding. So to have a certain knowledge that death is imminent, in contrast to some form of normal … that is exceedingly difficult.
I wish I could invent some kind of ointment for the soul – that could numb the pain and sorrow of loss or heartache. But a man-made ointment is both illusory and nowhere to be found (at least by earthly means). But if we approach our challenges with divine help, there can be spiritual advantages to be found in adversity, if we allow ourselves to see and hear what we must learn.
When the time is right, and after he has passed, we will share some fascinating events while on Mitchell’s Journey that have stirred our souls. Some have lamented while seeing our sweet son suffer “where is God in all this?” … and we can say in all confidence God is here in the midst of our pain today, and He has shown profound, undeniable tender mercies all along Mitchell’s Journey … and He will continue be here long after this storm passes. This we know. As we have been prayerful and watchful we have recognized [often in retrospect] that even the most mundane aspects of our lives fell into place like a beautiful, celestial symphony of tender mercies and heavenly direction. Sometimes in our sorrow we are tempted to feel alone, but looking back, we recognize we were never really alone. I believe that in our grief we are meant to feel alone in order that we might humble ourselves to talk to God and seek an understanding that defies mortal senses.
While hurting, we are grateful.
