Re: Reality bites! (warning death and dying topic)

[Guest guest]

Dear Deb, , and your family,

There simply aren't words that suffice at times like these. I know from

personal experience that hospice care can be an enormous gift during the most

difficult time in your life. But again, even with all of the nurses'

experience, NO ONE except for God Himself knows the hour and moment of when

we will be called home. They may be entirely right....but it would be nice

for you to be able to come into that realization in your own time not theirs

(if that makes any sense). I do know that caring for someone that you love

more than life itself during their last days is excruciatingly painful...but

it truly is the greatest gift you can possibly give. To be there, to hold

his hand, to read stories even when you're not sure he can still hear

you....those are memories that you will always have. In working through my

own grief I have always found comfort in knowing that while it was THE most

painful experience of my life, I know that my Dad had the very best care i

could give him right up until the moment he drew his last breath. And in all

honesty, i would not have missed the experience for anything in the world.

It gave me great insight into death and dying, and took much of the fear away

(not the grief, of course, but certainly the fear).

I am praying for God's angelic warriors to come down to you and protect you

and surryou and and everyone in your family....I will pray for your

peace of mind and Adnrew's physical comfort...we are always here for you...

hugs to you

ruth

[Guest guest]

Dear Deb, , and your family,

There simply aren't words that suffice at times like these. I know from

personal experience that hospice care can be an enormous gift during the most

difficult time in your life. But again, even with all of the nurses'

experience, NO ONE except for God Himself knows the hour and moment of when

we will be called home. They may be entirely right....but it would be nice

for you to be able to come into that realization in your own time not theirs

(if that makes any sense). I do know that caring for someone that you love

more than life itself during their last days is excruciatingly painful...but

it truly is the greatest gift you can possibly give. To be there, to hold

his hand, to read stories even when you're not sure he can still hear

you....those are memories that you will always have. In working through my

own grief I have always found comfort in knowing that while it was THE most

painful experience of my life, I know that my Dad had the very best care i

could give him right up until the moment he drew his last breath. And in all

honesty, i would not have missed the experience for anything in the world.

It gave me great insight into death and dying, and took much of the fear away

(not the grief, of course, but certainly the fear).

I am praying for God's angelic warriors to come down to you and protect you

and surryou and and everyone in your family....I will pray for your

peace of mind and Adnrew's physical comfort...we are always here for you...

hugs to you

ruth

[Guest guest]

Deb,

I'm praying for you and your family. May your strength continue to carry you through these tough times.

[Guest guest]

Deb,

I'm praying for you and your family. May your strength continue to carry you through these tough times.

[Guest guest]

Deb,

I'm praying for you and your family. May your strength continue to carry you through these tough times.

[Guest guest]

Deb, Your message struck my heart so deeply. I know this has been such a difficult year for you and your family. I will be praying for strength, peace, and comfort for you. I am sure you will treasure every precious moment with your son and as one said earlier, we do not know what God's plan is, as to the number of our days. We can be assured though of the love you have for your son. He is in your heart and am sure you are in his as well. God chose you to be his parent for a reason and knew you were able to handle all these trials even when they seem too much. Remember, God said in His precious word that He would never give you anything that you could not handle and that he would uphold you in His mighty hand. The adoption of this wonderful young man was God's choice for your family. He knew you were the perfect mother for . Now, God will give you the strength and peace you need to let him go, if or when needed. I have never been in this place where you are and can only rely on God's word to help you. I will pray for you to be enveloped in His loving arms. Please know the whole Mito list loves you and is here for you. Take care of yourself as well as . Darla: Asenath's mommy Reality bites! (warning death and dying topic) Hi therethere's not much to say, so I will just throw it out there...a couple of nurses who specialize in end-of-life care and one who is an experienced hospice nurse familiar with mito patients feels both feel that most likely only has a few weeks (a few months if we are really lucky)...even though we went on hospice/palliative care, I thought it was at least six motnhs away and even though we have been on hospice for a month, I still thought it was six months from yesterday...you know?I am little shocked...but we have reason to believe there have been several times where his brain has quit functioning but he roused himself out of it...sometimes your eyes protect you from stuff and I guess that is what we saw...I take comfort in the fact that we feel we have made very good decisions on 's behalf and that of our family...there is a bible verse that says...having done all, STAND...and we have stood on that...I am thankful that when I am not strong enough to stand, that God is holding for me and many poeple are Standing with me!deb Please contact mito-owner with any problems or questions.

[Guest guest]

Deb, Your message struck my heart so deeply. I know this has been such a difficult year for you and your family. I will be praying for strength, peace, and comfort for you. I am sure you will treasure every precious moment with your son and as one said earlier, we do not know what God's plan is, as to the number of our days. We can be assured though of the love you have for your son. He is in your heart and am sure you are in his as well. God chose you to be his parent for a reason and knew you were able to handle all these trials even when they seem too much. Remember, God said in His precious word that He would never give you anything that you could not handle and that he would uphold you in His mighty hand. The adoption of this wonderful young man was God's choice for your family. He knew you were the perfect mother for . Now, God will give you the strength and peace you need to let him go, if or when needed. I have never been in this place where you are and can only rely on God's word to help you. I will pray for you to be enveloped in His loving arms. Please know the whole Mito list loves you and is here for you. Take care of yourself as well as . Darla: Asenath's mommy Reality bites! (warning death and dying topic) Hi therethere's not much to say, so I will just throw it out there...a couple of nurses who specialize in end-of-life care and one who is an experienced hospice nurse familiar with mito patients feels both feel that most likely only has a few weeks (a few months if we are really lucky)...even though we went on hospice/palliative care, I thought it was at least six motnhs away and even though we have been on hospice for a month, I still thought it was six months from yesterday...you know?I am little shocked...but we have reason to believe there have been several times where his brain has quit functioning but he roused himself out of it...sometimes your eyes protect you from stuff and I guess that is what we saw...I take comfort in the fact that we feel we have made very good decisions on 's behalf and that of our family...there is a bible verse that says...having done all, STAND...and we have stood on that...I am thankful that when I am not strong enough to stand, that God is holding for me and many poeple are Standing with me!deb Please contact mito-owner with any problems or questions.

[Guest guest]

Deb, Your message struck my heart so deeply. I know this has been such a difficult year for you and your family. I will be praying for strength, peace, and comfort for you. I am sure you will treasure every precious moment with your son and as one said earlier, we do not know what God's plan is, as to the number of our days. We can be assured though of the love you have for your son. He is in your heart and am sure you are in his as well. God chose you to be his parent for a reason and knew you were able to handle all these trials even when they seem too much. Remember, God said in His precious word that He would never give you anything that you could not handle and that he would uphold you in His mighty hand. The adoption of this wonderful young man was God's choice for your family. He knew you were the perfect mother for . Now, God will give you the strength and peace you need to let him go, if or when needed. I have never been in this place where you are and can only rely on God's word to help you. I will pray for you to be enveloped in His loving arms. Please know the whole Mito list loves you and is here for you. Take care of yourself as well as . Darla: Asenath's mommy Reality bites! (warning death and dying topic) Hi therethere's not much to say, so I will just throw it out there...a couple of nurses who specialize in end-of-life care and one who is an experienced hospice nurse familiar with mito patients feels both feel that most likely only has a few weeks (a few months if we are really lucky)...even though we went on hospice/palliative care, I thought it was at least six motnhs away and even though we have been on hospice for a month, I still thought it was six months from yesterday...you know?I am little shocked...but we have reason to believe there have been several times where his brain has quit functioning but he roused himself out of it...sometimes your eyes protect you from stuff and I guess that is what we saw...I take comfort in the fact that we feel we have made very good decisions on 's behalf and that of our family...there is a bible verse that says...having done all, STAND...and we have stood on that...I am thankful that when I am not strong enough to stand, that God is holding for me and many poeple are Standing with me!deb Please contact mito-owner with any problems or questions.

[Guest guest]

Deb, I know I've only been on this list for a very short time, my prayers are with you and your family, I have no words to write to help you get through this, just know I'm praying for you and . God only picks special people to care for his special children, hang in their your on my mind and in my prayers always................

Patty

[Guest guest]

Deb, I know I've only been on this list for a very short time, my prayers are with you and your family, I have no words to write to help you get through this, just know I'm praying for you and . God only picks special people to care for his special children, hang in their your on my mind and in my prayers always................

Patty

[Guest guest]

Deb, I know I've only been on this list for a very short time, my prayers are with you and your family, I have no words to write to help you get through this, just know I'm praying for you and . God only picks special people to care for his special children, hang in their your on my mind and in my prayers always................

Patty

[Guest guest]

Ruth:

You said so much there. My dad had hospice too, and I would not give up that

experience for any thing in the world. Along with the birth of my children, the

death of my father is deep in the memory of my mind. The reading to him and on

the day he died I was singing to him and even saw a tear roll down his face.

Deb:

My heart missed a beat when I read your post. You have said so much to us in

the

past and to read that what we have written about may be coming closer to you

than

you would like. To hear those words of a time frame is not pleasant to hear or

read. You and your family have been through so much this past year, but I look

at the positive of the educating you and did this past year to people

before your big family trip. I'm so happy that you took it as a family and have

many pictures to look over. And that was in good spirits and with such a

supportive family. You know we are all here for you. You and your family are

in

our hearts and minds right now.

Nerenhausen

mom to Leah

hilandgang@... wrote:

> Dear Deb, , and your family,

>

> There simply aren't words that suffice at times like these. I know from

> personal experience that hospice care can be an enormous gift during the most

> difficult time in your life. But again, even with all of the nurses'

> experience, NO ONE except for God Himself knows the hour and moment of when

> we will be called home. They may be entirely right....but it would be nice

> for you to be able to come into that realization in your own time not theirs

> (if that makes any sense). I do know that caring for someone that you love

> more than life itself during their last days is excruciatingly painful...but

> it truly is the greatest gift you can possibly give. To be there, to hold

> his hand, to read stories even when you're not sure he can still hear

> you....those are memories that you will always have. In working through my

> own grief I have always found comfort in knowing that while it was THE most

> painful experience of my life, I know that my Dad had the very best care i

> could give him right up until the moment he drew his last breath. And in all

> honesty, i would not have missed the experience for anything in the world.

> It gave me great insight into death and dying, and took much of the fear away

> (not the grief, of course, but certainly the fear).

>

> I am praying for God's angelic warriors to come down to you and protect you

> and surryou and and everyone in your family....I will pray for your

> peace of mind and Adnrew's physical comfort...we are always here for you...

>

> hugs to you

>

> ruth

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

Ruth:

You said so much there. My dad had hospice too, and I would not give up that

experience for any thing in the world. Along with the birth of my children, the

death of my father is deep in the memory of my mind. The reading to him and on

the day he died I was singing to him and even saw a tear roll down his face.

Deb:

My heart missed a beat when I read your post. You have said so much to us in

the

past and to read that what we have written about may be coming closer to you

than

you would like. To hear those words of a time frame is not pleasant to hear or

read. You and your family have been through so much this past year, but I look

at the positive of the educating you and did this past year to people

before your big family trip. I'm so happy that you took it as a family and have

many pictures to look over. And that was in good spirits and with such a

supportive family. You know we are all here for you. You and your family are

in

our hearts and minds right now.

Nerenhausen

mom to Leah

hilandgang@... wrote:

> Dear Deb, , and your family,

>

> There simply aren't words that suffice at times like these. I know from

> personal experience that hospice care can be an enormous gift during the most

> difficult time in your life. But again, even with all of the nurses'

> experience, NO ONE except for God Himself knows the hour and moment of when

> we will be called home. They may be entirely right....but it would be nice

> for you to be able to come into that realization in your own time not theirs

> (if that makes any sense). I do know that caring for someone that you love

> more than life itself during their last days is excruciatingly painful...but

> it truly is the greatest gift you can possibly give. To be there, to hold

> his hand, to read stories even when you're not sure he can still hear

> you....those are memories that you will always have. In working through my

> own grief I have always found comfort in knowing that while it was THE most

> painful experience of my life, I know that my Dad had the very best care i

> could give him right up until the moment he drew his last breath. And in all

> honesty, i would not have missed the experience for anything in the world.

> It gave me great insight into death and dying, and took much of the fear away

> (not the grief, of course, but certainly the fear).

>

> I am praying for God's angelic warriors to come down to you and protect you

> and surryou and and everyone in your family....I will pray for your

> peace of mind and Adnrew's physical comfort...we are always here for you...

>

> hugs to you

>

> ruth

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

Ruth:

You said so much there. My dad had hospice too, and I would not give up that

experience for any thing in the world. Along with the birth of my children, the

death of my father is deep in the memory of my mind. The reading to him and on

the day he died I was singing to him and even saw a tear roll down his face.

Deb:

My heart missed a beat when I read your post. You have said so much to us in

the

past and to read that what we have written about may be coming closer to you

than

you would like. To hear those words of a time frame is not pleasant to hear or

read. You and your family have been through so much this past year, but I look

at the positive of the educating you and did this past year to people

before your big family trip. I'm so happy that you took it as a family and have

many pictures to look over. And that was in good spirits and with such a

supportive family. You know we are all here for you. You and your family are

in

our hearts and minds right now.

Nerenhausen

mom to Leah

hilandgang@... wrote:

> Dear Deb, , and your family,

>

> There simply aren't words that suffice at times like these. I know from

> personal experience that hospice care can be an enormous gift during the most

> difficult time in your life. But again, even with all of the nurses'

> experience, NO ONE except for God Himself knows the hour and moment of when

> we will be called home. They may be entirely right....but it would be nice

> for you to be able to come into that realization in your own time not theirs

> (if that makes any sense). I do know that caring for someone that you love

> more than life itself during their last days is excruciatingly painful...but

> it truly is the greatest gift you can possibly give. To be there, to hold

> his hand, to read stories even when you're not sure he can still hear

> you....those are memories that you will always have. In working through my

> own grief I have always found comfort in knowing that while it was THE most

> painful experience of my life, I know that my Dad had the very best care i

> could give him right up until the moment he drew his last breath. And in all

> honesty, i would not have missed the experience for anything in the world.

> It gave me great insight into death and dying, and took much of the fear away

> (not the grief, of course, but certainly the fear).

>

> I am praying for God's angelic warriors to come down to you and protect you

> and surryou and and everyone in your family....I will pray for your

> peace of mind and Adnrew's physical comfort...we are always here for you...

>

> hugs to you

>

> ruth

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

Dear Deb,

I have not directly responded to your posts before because others are more helpful (my son has different manifestations of mito) and more eloquent than I am. But your post today was a stab to my heart. I have followed your path with from day one, praying all along the way with you. was truly blessed when he was chosen to become a member of your family. He has been through so much in his short life, and you have been there for him. I am glad that you can take comfort in your decisions for ; you have done so much for him and yet you know when to let him just play ball. We do the best we can for our children and we need to trust that.

Hold your family close, Deb. We are all there with you.

Love,

mary b

Connor's mom - 9 1/2 years old - Leigh's/COX

Reality bites! (warning death and dying topic)

Hi therethere's not much to say, so I will just throw it out there...a couple of nurses who specialize in end-of-life care and one who is an experienced hospice nurse familiar with mito patients feels both feel that most likely only has a few weeks (a few months if we are really lucky)...even though we went on hospice/palliative care, I thought it was at least six motnhs away and even though we have been on hospice for a month, I still thought it was six months from yesterday...you know?I am little shocked...but we have reason to believe there have been several times where his brain has quit functioning but he roused himself out of it...sometimes your eyes protect you from stuff and I guess that is what we saw...I take comfort in the fact that we feel we have made very good decisions on 's behalf and that of our family...there is a bible verse that says...having done all, STAND...and we have stood on that...I am thankful that when I am not strong enough to stand, that God is holding for me and many poeple are Standing with me!deb Please contact mito-owner with any problems or questions.

[Guest guest]

there is a bible verse that says...having done all, STAND...and we have stood on that...I am thankful that when I am not strong enough to stand, that God is holding for me and many poeple are Standing with me!

deb

I STAND with you, too...and yours is an example of faithfulness! My prayer includes a request for peace in the heart of your family at this time.

[Guest guest]

Deb,

I am one more who is standing with you. I am so sorry for how you are

feeling. Having the veil lifted by other people is very difficult. I can

still feel that kicked in the gut feeling, when someone did it to

us....for us.

We think that we've prepared ourselves, but we are capable of only

processing so much at a time. I believe that there is much more than our

eyes involved in allowing us to see only so much.....mind,

heart.....hope......hope

Peace,

________________________________________________________________

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[Guest guest]

Deb,

Keep me informed. I will try and call you. I know you are doing all you can and am so proud of you for looking the reality of life and death in the face and STANDING. My heartfelt prayers and thoughts are with you guys.

Love,

-----Original Message-----From: VisibleWorship@... Sent: Wednesday, March 05, 2003 10:24 AMTo: mito Subject: Reality bites! (warning death and dying topic)Hi therethere's not much to say, so I will just throw it out there...a couple of nurses who specialize in end-of-life care and one who is an experienced hospice nurse familiar with mito patients feels both feel that most likely only has a few weeks (a few months if we are really lucky)...even though we went on hospice/palliative care, I thought it was at least six motnhs away and even though we have been on hospice for a month, I still thought it was six months from yesterday...you know?I am little shocked...but we have reason to believe there have been several times where his brain has quit functioning but he roused himself out of it...sometimes your eyes protect you from stuff and I guess that is what we saw...I take comfort in the fact that we feel we have made very good decisions on 's behalf and that of our family...there is a bible verse that says...having done all, STAND...and we have stood on that...I am thankful that when I am not strong enough to stand, that God is holding for me and many poeple are Standing with me!deb Please contact mito-owner with any problems or questions.

[Guest guest]

Deb,

Amie told me about yesterday and then I got the email myself. I

have been trying to think of some great words of wisdom that will make

this time easier for you and your family, but after much thought, I

realize there is nothing to say that will make this easy. It is never

easy to loose someone we love and this is especially true when it is our

child. My heart goes out to you and your family in this difficult time.

I know you are strong in your faith and that will get you through.

Remember, we are never alone in Christ. He is always with us. My

prayers are with you now and always.

Kathy

[Guest guest]

Deb,

Amie told me about yesterday and then I got the email myself. I

have been trying to think of some great words of wisdom that will make

this time easier for you and your family, but after much thought, I

realize there is nothing to say that will make this easy. It is never

easy to loose someone we love and this is especially true when it is our

child. My heart goes out to you and your family in this difficult time.

I know you are strong in your faith and that will get you through.

Remember, we are never alone in Christ. He is always with us. My

prayers are with you now and always.

Kathy

[Guest guest]

Deb:

I am so sorry for what you are going through right now. You are

right in that reality bites, life sure is not fair. I can't imagine

what that must be like when you are given a time frame like that.

No one knows for sure when someone will pass on but I have always

thought that it must be so hard to live with a time frame in mind.

I know that I don't have a single day that I don't think about Abby

possibly dying and I just hate it. All future plans are tainted

with the thought of whether or not Abby will be with us still. It

makes me so sad that I can't stop thinking about it, I just want to

enjoy her today and not worry about tomorrow. But when you are told

that your child will have a shortened life span how can that not be

on your mind on a daily basis. God bless you and your family.

e, mom to Abby

> Hi there

>

> there's not much to say, so I will just throw it out there...

>

> a couple of nurses who specialize in end-of-life care and one who

is an

> experienced hospice nurse familiar with mito patients feels both

feel that

> most likely only has a few weeks (a few months if we are

really

> lucky)...even though we went on hospice/palliative care, I thought

it was at

> least six motnhs away and even though we have been on hospice for

a month, I

> still thought it was six months from yesterday...you know?

>

> I am little shocked...but we have reason to believe there have

been several

> times where his brain has quit functioning but he roused himself

out of

> it...sometimes your eyes protect you from stuff and I guess that

is what we

> saw...

>

> I take comfort in the fact that we feel we have made very good

decisions on

> 's behalf and that of our family...

>

> there is a bible verse that says...having done all, STAND...and we

have stood

> on that...I am thankful that when I am not strong enough to stand,

that God

> is holding for me and many poeple are Standing with me!

>

> deb

[Guest guest]

Deb:

I am so sorry for what you are going through right now. You are

right in that reality bites, life sure is not fair. I can't imagine

what that must be like when you are given a time frame like that.

No one knows for sure when someone will pass on but I have always

thought that it must be so hard to live with a time frame in mind.

I know that I don't have a single day that I don't think about Abby

possibly dying and I just hate it. All future plans are tainted

with the thought of whether or not Abby will be with us still. It

makes me so sad that I can't stop thinking about it, I just want to

enjoy her today and not worry about tomorrow. But when you are told

that your child will have a shortened life span how can that not be

on your mind on a daily basis. God bless you and your family.

e, mom to Abby

> Hi there

>

> there's not much to say, so I will just throw it out there...

>

> a couple of nurses who specialize in end-of-life care and one who

is an

> experienced hospice nurse familiar with mito patients feels both

feel that

> most likely only has a few weeks (a few months if we are

really

> lucky)...even though we went on hospice/palliative care, I thought

it was at

> least six motnhs away and even though we have been on hospice for

a month, I

> still thought it was six months from yesterday...you know?

>

> I am little shocked...but we have reason to believe there have

been several

> times where his brain has quit functioning but he roused himself

out of

> it...sometimes your eyes protect you from stuff and I guess that

is what we

> saw...

>

> I take comfort in the fact that we feel we have made very good

decisions on

> 's behalf and that of our family...

>

> there is a bible verse that says...having done all, STAND...and we

have stood

> on that...I am thankful that when I am not strong enough to stand,

that God

> is holding for me and many poeple are Standing with me!

>

> deb

[Guest guest]

Deb:

I am so sorry for what you are going through right now. You are

right in that reality bites, life sure is not fair. I can't imagine

what that must be like when you are given a time frame like that.

No one knows for sure when someone will pass on but I have always

thought that it must be so hard to live with a time frame in mind.

I know that I don't have a single day that I don't think about Abby

possibly dying and I just hate it. All future plans are tainted

with the thought of whether or not Abby will be with us still. It

makes me so sad that I can't stop thinking about it, I just want to

enjoy her today and not worry about tomorrow. But when you are told

that your child will have a shortened life span how can that not be

on your mind on a daily basis. God bless you and your family.

e, mom to Abby

> Hi there

>

> there's not much to say, so I will just throw it out there...

>

> a couple of nurses who specialize in end-of-life care and one who

is an

> experienced hospice nurse familiar with mito patients feels both

feel that

> most likely only has a few weeks (a few months if we are

really

> lucky)...even though we went on hospice/palliative care, I thought

it was at

> least six motnhs away and even though we have been on hospice for

a month, I

> still thought it was six months from yesterday...you know?

>

> I am little shocked...but we have reason to believe there have

been several

> times where his brain has quit functioning but he roused himself

out of

> it...sometimes your eyes protect you from stuff and I guess that

is what we

> saw...

>

> I take comfort in the fact that we feel we have made very good

decisions on

> 's behalf and that of our family...

>

> there is a bible verse that says...having done all, STAND...and we

have stood

> on that...I am thankful that when I am not strong enough to stand,

that God

> is holding for me and many poeple are Standing with me!

>

> deb

[Guest guest]

Deb,

I,like everyone else, am Standing along side you and your family.I pray every day for all of you.

The only thing I might add is Psalm 46:1 God is our refuge ans strength,a very present help in time of trouble.

GOD BLESS YOU.

, Mom to