Friday Morning

[Guest guest]

It is 5:00 a.m. and I am on my second cup of coffee. My grandson and I are early risers and we always drink coffee together in the morning. It is the best part of my day. He is 18 1/2 now. Yesterday he was 9 months old and causing my heart to burst every time I looked at him. Always a teaser and always mischievous, but never mean.....he has become the most warm, caring, and sensitive person I have ever known. His father deserted him and his siblings when he was 8. He is so giving and kind toward his baby brother with Autism. Treats him like his own child. He watches me and sees my needs before I even recognize that I have a need. I thank God this morning for him. He makes my heart sing.

Mornings like this and moments when I am filled with this heartstopping love....these are the things that make me struggle against death. I can see the love in the eyes of these needy grandchildren (from a broken and violent family) and know that God is using me to help build their lives. Who else is there except me that can love them like I can. My home and my arms have always been their safe place. Who else will fill that need with such love. When I find myself wondering why God continues to allow me to live in the face of such devastating illness and the purpose of my remaining here in such a restricted manner of life, I look at the faces of these 5 children and I see the answer.

These children have found themselves living with us off and on over the years of their young lives. What if we had not been here? What if we had put our comfort and needs before theirs. It has not been easy. Our home is small. Our life has been structured around their needs. God surely has used us to nurture these sweet children that he loves so much. In the end, I wonder who has needed whom the most. They are such good medicine.

I started this post to let you know that finally after weeks of feeling like everyday was my last day, of seeing no results to my meds, of total frustration.....yesterday I felt some degree of improvement. This morning I feel it too. I pray that this means this medication is kicking in. I just want a few more mornings to spend with my Dylan, a few more wet naked (just out of the tub) hugs from my little brain impaired baby, a few more sweet I love Mamaw pictures from 7 to hang on my wall, a couple more bear hugs from my big old football playing grandson with the big dimples, a few more intimate nighttime talks with my 14 year old granddaughter who has been like a growth on my side since birth. She is now trying to be so aloof and cool....the normal teenage attitude.....yet, while she is still in front of the house waiting for the bus texts me to tell me she loves me. I thank God for yesterday and I thank him for this morning. I beg him for one more day. God knows the needs of these children and he knows the desire of my heart. I must trust his will.

Long, long post. Sorry. Continue to pray. I had one good day and I am ecstatic.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

[Guest guest]

Joyce,

That was beautiful and made me cry in my coffee this morning. You are giving those children so much by just living your life as best you can, loving them and their mom and showing them that life is good even when it is difficult and painful. You know those children are going to be different, better people than they would have been if not for you and Lucien. It reminds me of something Mother Theresa said, that she was "just God's pencil". You make me think of that, just allowing God to use you in whatever way He chooses.

I will pray that the medication is indeed kicking in and that you will continue to feel better and stronger. We love you and need you too!!

Beth in NC age 48 Fibrotic NSIP 06/06

"For as long as I shall live, I will testify to Love."

Friday Morning

It is 5:00 a.m. and I am on my second cup of coffee. My grandson and I are early risers and we always drink coffee together in the morning. It is the best part of my day. He is 18 1/2 now. Yesterday he was 9 months old and causing my heart to burst every time I looked at him. Always a teaser and always mischievous, but never mean.....he has become the most warm, caring, and sensitive person I have ever known. His father deserted him and his siblings when he was 8. He is so giving and kind toward his baby brother with Autism. Treats him like his own child. He watches me and sees my needs before I even recognize that I have a need. I thank God this morning for him. He makes my heart sing.

Mornings like this and moments when I am filled with this heartstopping love....these are the things that make me struggle against death. I can see the love in the eyes of these needy grandchildren (from a broken and violent family) and know that God is using me to help build their lives. Who else is there except me that can love them like I can. My home and my arms have always been their safe place. Who else will fill that need with such love. When I find myself wondering why God continues to allow me to live in the face of such devastating illness and the purpose of my remaining here in such a restricted manner of life, I look at the faces of these 5 children and I see the answer.

These children have found themselves living with us off and on over the years of their young lives. What if we had not been here? What if we had put our comfort and needs before theirs. It has not been easy. Our home is small. Our life has been structured around their needs. God surely has used us to nurture these sweet children that he loves so much. In the end, I wonder who has needed whom the most. They are such good medicine.

I started this post to let you know that finally after weeks of feeling like everyday was my last day, of seeing no results to my meds, of total frustration. ....yesterday I felt some degree of improvement. This morning I feel it too. I pray that this means this medication is kicking in. I just want a few more mornings to spend with my Dylan, a few more wet naked (just out of the tub) hugs from my little brain impaired baby, a few more sweet I love Mamaw pictures from 7 to hang on my wall, a couple more bear hugs from my big old football playing grandson with the big dimples, a few more intimate nighttime talks with my 14 year old granddaughter who has been like a growth on my side since birth. She is now trying to be so aloof and cool....the normal teenage attitude.... .yet, while she is still in front of the house waiting for the bus texts me to tell me she loves

me. I thank God for yesterday and I thank him for this morning. I beg him for one more day. God knows the needs of these children and he knows the desire of my heart. I must trust his will.

Long, long post. Sorry. Continue to pray. I had one good day and I am ecstatic.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

[Guest guest]

This post even sounds like it has a sparkle in it. Oh I am so

grateful. One thing about your Grandson he could just pick you up

like you were a doll. BIG BOY--Good looking BIG BOY. What a

wonderful way to start the day.

What an answer to prayer if it is working. I take that back...Thank

God IT IS WORKING. Keep improving so you can get out and run the

streets again. Love you, have a great rest of this day.

Love and Prayers, Peggy

Florida, ipf 6/04

Worry looks around.

Sorry looks back,

Faith looks up.

It is 5:00 a.m. and I am on my second cup of coffee. My grandson and

I are early risers and we always drink coffee together in the

morning. It is the best part of my day. He is 18 1/2 now.

Yesterday he was 9 months old and causing my heart to burst every

time I looked at him. Always a teaser and always mischievous, but

never mean.....he has become the most warm, caring, and sensitive

person I have ever known. His father deserted him and his siblings

when he was 8. He is so giving and kind toward his baby brother with

Autism. Treats him like his own child. He watches me and sees my

needs before I even recognize that I have a need. I thank God this

morning for him. He makes my heart sing.

Mornings like this and moments when I am filled with this

heartstopping love....these are the things that make me struggle

against death. I can see the love in the eyes of these needy

grandchildren (from a broken and violent family) and know that God is

using me to help build their lives. Who else is there except me that

can love them like I can. My home and my arms have always been their

safe place. Who else will fill that need with such love. When I

find myself wondering why God continues to allow me to live in the

face of such devastating illness and the purpose of my remaining here

in such a restricted manner of life, I look at the faces of these 5

children and I see the answer.

These children have found themselves living with us off and on over

the years of their young lives. What if we had not been here? What

if we had put our comfort and needs before theirs. It has not been

easy. Our home is small. Our life has been structured around their

needs. God surely has used us to nurture these sweet children that

he loves so much. In the end, I wonder who has needed whom the

most. They are such good medicine.

I started this post to let you know that finally after weeks of

feeling like everyday was my last day, of seeing no results to my

meds, of total frustration.....yesterday I felt some degree of

improvement. This morning I feel it too. I pray that this means

this medication is kicking in. I just want a few more mornings to

spend with my Dylan, a few more wet naked (just out of the tub) hugs

from my little brain impaired baby, a few more sweet I love Mamaw

pictures from 7 to hang on my wall, a couple more bear hugs

from my big old football playing grandson with the big dimples, a few

more intimate nighttime talks with my 14 year old granddaughter who

has been like a growth on my side since birth. She is now trying to

be so aloof and cool....the normal teenage attitude.....yet, while

she is still in front of the house waiting for the bus texts me to

tell me she loves me. I thank God for yesterday and I thank him for

this morning. I beg him for one more day. God knows the needs of

these children and he knows the desire of my heart. I must trust his

will.

Long, long post. Sorry. Continue to pray. I had one good day and I

am ecstatic.

Hugs, Joyce D.

Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary

Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA,

Sjogren's, etc) Rejected for Transplant 2006

......I will not forget you. Behold, I have engraved you on the palm

of my hands. Isaiah 49: 15-16

[Guest guest]

joyce

what a wonderful post. best of the week.

you have said it all wonderfully.

i'm so glad that things are looking

more positive med wise.

i am glad you are and were there for them and

they are there for you and i enjoyed

hearing a bit about your grandkids and

their personalities.

may

>

>

> It is 5:00 a.m. and I am on my second cup of coffee. My grandson

and I

> are early risers and we always drink coffee together in the

morning. It

> is the best part of my day. He is 18 1/2 now. Yesterday he was 9

> months old and causing my heart to burst every time I looked at him.

> Always a teaser and always mischievous, but never mean.....he has

become

> the most warm, caring, and sensitive person I have ever known. His

> father deserted him and his siblings when he was 8. He is so

giving and

> kind toward his baby brother with Autism. Treats him like his own

> child. He watches me and sees my needs before I even recognize

that I

> have a need. I thank God this morning for him. He makes my heart

sing.

>

> Mornings like this and moments when I am filled with this

heartstopping

> love....these are the things that make me struggle against death.

I can

> see the love in the eyes of these needy grandchildren (from a

broken and

> violent family) and know that God is using me to help build their

lives.

> Who else is there except me that can love them like I can. My home

and

> my arms have always been their safe place. Who else will fill that

need

> with such love. When I find myself wondering why God continues to

allow

> me to live in the face of such devastating illness and the purpose

of my

> remaining here in such a restricted manner of life, I look at the

faces

> of these 5 children and I see the answer.

>

> These children have found themselves living with us off and on over

the

> years of their young lives. What if we had not been here? What if

we

> had put our comfort and needs before theirs. It has not been

easy. Our

> home is small. Our life has been structured around their needs.

God

> surely has used us to nurture these sweet children that he loves so

> much. In the end, I wonder who has needed whom the most. They are

such

> good medicine.

>

> I started this post to let you know that finally after weeks of

feeling

> like everyday was my last day, of seeing no results to my meds, of

total

> frustration.....yesterday I felt some degree of improvement. This

> morning I feel it too. I pray that this means this medication is

> kicking in. I just want a few more mornings to spend with my

Dylan, a

> few more wet naked (just out of the tub) hugs from my little brain

> impaired baby, a few more sweet I love Mamaw pictures from 7

to

> hang on my wall, a couple more bear hugs from my big old football

> playing grandson with the big dimples, a few more intimate nighttime

> talks with my 14 year old granddaughter who has been like a growth

on my

> side since birth. She is now trying to be so aloof and cool....the

> normal teenage attitude.....yet, while she is still in front of the

> house waiting for the bus texts me to tell me she loves me. I

thank God

> for yesterday and I thank him for this morning. I beg him for one

more

> day. God knows the needs of these children and he knows the desire

of

> my heart. I must trust his will.

>

> Long, long post. Sorry. Continue to pray. I had one good day and

I am

> ecstatic.

>

> Hugs, Joyce D.

> Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary

Hypertension

> 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)

> Rejected for Transplant 2006

> .....I will not forget you. Behold, I have engraved you on the

palm of

> my hands. Isaiah 49: 15-16

>

[Guest guest]

Beautiful expression of how one incredible person still finds quality of

life. You work hard for it and sometimes have to search hard, but then

its there and makes it all worthwhile. Whether its a good day or hour or

even just a moment (like the text message in the morning), it's good.

>

>

> It is 5:00 a.m. and I am on my second cup of coffee. My grandson and I

> are early risers and we always drink coffee together in the morning.

It

> is the best part of my day. He is 18 1/2 now. Yesterday he was 9

> months old and causing my heart to burst every time I looked at him.

> Always a teaser and always mischievous, but never mean.....he has

become

> the most warm, caring, and sensitive person I have ever known. His

> father deserted him and his siblings when he was 8. He is so giving

and

> kind toward his baby brother with Autism. Treats him like his own

> child. He watches me and sees my needs before I even recognize that I

> have a need. I thank God this morning for him. He makes my heart sing.

>

> Mornings like this and moments when I am filled with this

heartstopping

> love....these are the things that make me struggle against death. I

can

> see the love in the eyes of these needy grandchildren (from a broken

and

> violent family) and know that God is using me to help build their

lives.

> Who else is there except me that can love them like I can. My home and

> my arms have always been their safe place. Who else will fill that

need

> with such love. When I find myself wondering why God continues to

allow

> me to live in the face of such devastating illness and the purpose of

my

> remaining here in such a restricted manner of life, I look at the

faces

> of these 5 children and I see the answer.

>

> These children have found themselves living with us off and on over

the

> years of their young lives. What if we had not been here? What if we

> had put our comfort and needs before theirs. It has not been easy. Our

> home is small. Our life has been structured around their needs. God

> surely has used us to nurture these sweet children that he loves so

> much. In the end, I wonder who has needed whom the most. They are such

> good medicine.

>

> I started this post to let you know that finally after weeks of

feeling

> like everyday was my last day, of seeing no results to my meds, of

total

> frustration.....yesterday I felt some degree of improvement. This

> morning I feel it too. I pray that this means this medication is

> kicking in. I just want a few more mornings to spend with my Dylan, a

> few more wet naked (just out of the tub) hugs from my little brain

> impaired baby, a few more sweet I love Mamaw pictures from 7 to

> hang on my wall, a couple more bear hugs from my big old football

> playing grandson with the big dimples, a few more intimate nighttime

> talks with my 14 year old granddaughter who has been like a growth on

my

> side since birth. She is now trying to be so aloof and cool....the

> normal teenage attitude.....yet, while she is still in front of the

> house waiting for the bus texts me to tell me she loves me. I thank

God

> for yesterday and I thank him for this morning. I beg him for one more

> day. God knows the needs of these children and he knows the desire of

> my heart. I must trust his will.

>

> Long, long post. Sorry. Continue to pray. I had one good day and I am

> ecstatic.

>

> Hugs, Joyce D.

> Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension

> 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)

> Rejected for Transplant 2006

> .....I will not forget you. Behold, I have engraved you on the palm of

> my hands. Isaiah 49: 15-16

>

[Guest guest]

Joyce, Wishing this one great day and

many more to come.

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s

too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and

MomMom to

Darah

and Sara

“I’m

gonna

be iron like a lion in Zion” Bob Marley

Joyce wrote:

It is 5:00 a.m. and

I am on my second cup of coffee. My grandson and I are early risers

and we always drink coffee together in the morning. It is the best

part of my day. He is 18 1/2 now. Yesterday he was 9 months old and

causing my heart to burst every time I looked at him. Always a teaser

and always mischievous, but never mean.....he has become the most warm,

caring, and sensitive person I have ever known. His father deserted

him and his siblings when he was 8. He is so giving and kind toward

his baby brother with Autism. Treats him like his own child. He

watches me and sees my needs before I even recognize that I have a

need. I thank God this morning for him. He makes my heart sing.

Mornings like this

and moments when I am filled with this heartstopping love....these are

the things that make me struggle against death. I can see the love in

the eyes of these needy grandchildren (from a broken and violent

family) and know that God is using me to help build their lives. Who

else is there except me that can love them like I can. My home and my

arms have always been their safe place. Who else will fill that need

with such love. When I find myself wondering why God continues to

allow me to live in the face of such devastating illness and the

purpose of my remaining here in such a restricted manner of life, I

look at the faces of these 5 children and I see the answer.

These children have

found themselves living with us off and on over the years of their

young lives. What if we had not been here? What if we had put our

comfort and needs before theirs. It has not been easy. Our home is

small. Our life has been structured around their needs. God surely

has used us to nurture these sweet children that he loves so much. In

the end, I wonder who has needed whom the most. They are such good

medicine.

I started this post

to let you know that finally after weeks of feeling like everyday was

my last day, of seeing no results to my meds, of total frustration.....yesterday

I felt some degree of improvement. This morning I feel it too. I pray

that this means this medication is kicking in. I just want a few more

mornings to spend with my Dylan, a few more wet naked (just out of the

tub) hugs from my little brain impaired baby, a few more sweet I love

Mamaw pictures from 7 to hang on my wall, a couple more bear

hugs from my big old football playing grandson with the big dimples, a

few more intimate nighttime talks with my 14 year old granddaughter who

has been like a growth on my side since birth. She is now trying to be

so aloof and cool....the normal teenage attitude.....yet, while

she is still in front of the house waiting for the bus texts me to tell

me she loves me. I thank God for yesterday and I thank him for this

morning. I beg him for one more day. God knows the needs of these

children and he knows the desire of my heart. I must trust his will.

Long, long post.

Sorry. Continue to pray. I had one good day and I am ecstatic.

Hugs, Joyce D.

Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary

Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA,

Sjogren's, etc) Rejected for Transplant 2006

......I will not forget you. Behold, I have engraved you on

the palm of my hands. Isaiah 49: 15-16

No virus found in this incoming message.

Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.7/1328 - Release Date: 3/13/2008 11:31 AM

[Guest guest]

Joyce.... you are so poetic in your heart-felt writings. I can relate to everything you said about your family members....bringing me my own thoughts about mine.

I'm so so glad you have such a family around you and I absolutely know for sure that God isn't through with you yet!

We've had violence (drug induced) in our family and to this day we try to be a safe place to fall in all the lives affected. Babies born under the influence of drugs makes me nearly crazy!

You know you will be truly missed when the time comes but as long as you are here what a wonderful gift from God to still bless their lives!

I think there is no greater gift than to be a stepping-stone for another human being!

Sorry...kinda got on a roll there.

I'm glad you are feeling peaceful this morning Joyce.

Love ya.

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Friday Morning

It is 5:00 a.m. and I am on my second cup of coffee. My grandson and I are early risers and we always drink coffee together in the morning. It is the best part of my day. He is 18 1/2 now. Yesterday he was 9 months old and causing my heart to burst every time I looked at him. Always a teaser and always mischievous, but never mean.....he has become the most warm, caring, and sensitive person I have ever known. His father deserted him and his siblings when he was 8. He is so giving and kind toward his baby brother with Autism. Treats him like his own child. He watches me and sees my needs before I even recognize that I have a need. I thank God this morning for him. He makes my heart sing.

Mornings like this and moments when I am filled with this heartstopping love....these are the things that make me struggle against death. I can see the love in the eyes of these needy grandchildren (from a broken and violent family) and know that God is using me to help build their lives. Who else is there except me that can love them like I can. My home and my arms have always been their safe place. Who else will fill that need with such love. When I find myself wondering why God continues to allow me to live in the face of such devastating illness and the purpose of my remaining here in such a restricted manner of life, I look at the faces of these 5 children and I see the answer.

These children have found themselves living with us off and on over the years of their young lives. What if we had not been here? What if we had put our comfort and needs before theirs. It has not been easy. Our home is small. Our life has been structured around their needs. God surely has used us to nurture these sweet children that he loves so much. In the end, I wonder who has needed whom the most. They are such good medicine.

I started this post to let you know that finally after weeks of feeling like everyday was my last day, of seeing no results to my meds, of total frustration.....yesterday I felt some degree of improvement. This morning I feel it too. I pray that this means this medication is kicking in. I just want a few more mornings to spend with my Dylan, a few more wet naked (just out of the tub) hugs from my little brain impaired baby, a few more sweet I love Mamaw pictures from 7 to hang on my wall, a couple more bear hugs from my big old football playing grandson with the big dimples, a few more intimate nighttime talks with my 14 year old granddaughter who has been like a growth on my side since birth. She is now trying to be so aloof and cool....the normal teenage attitude.....yet, while she is still in front of the house waiting for the bus texts me to tell me she loves me. I thank God for yesterday and I thank him for this morning. I beg him for one more day. God knows the needs of these children and he knows the desire of my heart. I must trust his will.

Long, long post. Sorry. Continue to pray. I had one good day and I am ecstatic.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

[Guest guest]

Joyce, how happy I am for you that you feel the meds are finally

kicking in. I know it has been a very rough time for you.

Your post took my breath away, and I shed a few tears. It made me

think about why I still fight so hard, and it's also because of my

family. I am a surrogate grandmother to my nephews, as well as being

their " Auntie B " , and they are a huge delight in my life.

I have little great nieces and nephews now and I want to be around to

see them grow up too.

Thank you for a sweet and touching post. Your family is very lucky to

have you, and I bet they already know that!

With hugs and love to you!

Babs in Texas

>

>

> It is 5:00 a.m. and I am on my second cup of coffee. My grandson and I

> are early risers and we always drink coffee together in the morning. It

> is the best part of my day. He is 18 1/2 now. Yesterday he was 9

> months old and causing my heart to burst every time I looked at him.

> Always a teaser and always mischievous, but never mean.....he has become

> the most warm, caring, and sensitive person I have ever known. His

> father deserted him and his siblings when he was 8. He is so giving and

> kind toward his baby brother with Autism. Treats him like his own

> child. He watches me and sees my needs before I even recognize that I

> have a need. I thank God this morning for him. He makes my heart sing.

>

> Mornings like this and moments when I am filled with this heartstopping

> love....these are the things that make me struggle against death. I can

> see the love in the eyes of these needy grandchildren (from a broken and

> violent family) and know that God is using me to help build their lives.

> Who else is there except me that can love them like I can. My home and

> my arms have always been their safe place. Who else will fill that need

> with such love. When I find myself wondering why God continues to allow

> me to live in the face of such devastating illness and the purpose of my

> remaining here in such a restricted manner of life, I look at the faces

> of these 5 children and I see the answer.

>

> These children have found themselves living with us off and on over the

> years of their young lives. What if we had not been here? What if we

> had put our comfort and needs before theirs. It has not been easy. Our

> home is small. Our life has been structured around their needs. God

> surely has used us to nurture these sweet children that he loves so

> much. In the end, I wonder who has needed whom the most. They are such

> good medicine.

>

> I started this post to let you know that finally after weeks of feeling

> like everyday was my last day, of seeing no results to my meds, of total

> frustration.....yesterday I felt some degree of improvement. This

> morning I feel it too. I pray that this means this medication is

> kicking in. I just want a few more mornings to spend with my Dylan, a

> few more wet naked (just out of the tub) hugs from my little brain

> impaired baby, a few more sweet I love Mamaw pictures from 7 to

> hang on my wall, a couple more bear hugs from my big old football

> playing grandson with the big dimples, a few more intimate nighttime

> talks with my 14 year old granddaughter who has been like a growth on my

> side since birth. She is now trying to be so aloof and cool....the

> normal teenage attitude.....yet, while she is still in front of the

> house waiting for the bus texts me to tell me she loves me. I thank God

> for yesterday and I thank him for this morning. I beg him for one more

> day. God knows the needs of these children and he knows the desire of

> my heart. I must trust his will.

>

> Long, long post. Sorry. Continue to pray. I had one good day and I am

> ecstatic.

>

> Hugs, Joyce D.

> Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension

> 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)

> Rejected for Transplant 2006

> .....I will not forget you. Behold, I have engraved you on the palm of

> my hands. Isaiah 49: 15-16

>

[Guest guest]

Thanks, Babs,

Any love and benevolance that is given to a child comes back to us tenfold. They need so much love and support and there are so many children that are neglected and hurt on a daily basis. Just makes me sick inside.

Today was not as positive as yesturday. I wouldn't give it back, though. I count every day a victory and I am always a little surprised to awaken in the morning.

I see docs this week. Would love to get some answers. I truly don't think they have any!

I'm so glad you are in our group. I just love your spirit in the face of all the complicated illness that you deal with.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > >> > > > It is 5:00 a.m. and I am on my second cup of coffee. My grandson and I> > are early risers and we always drink coffee together in the morning. It> > is the best part of my day. He is 18 1/2 now. Yesterday he was 9> > months old and causing my heart to burst every time I looked at him.> > Always a teaser and always mischievous, but never mean.....he has become> > the most warm, caring, and sensitive person I have ever known. His> > father deserted him and his siblings when he was 8. He is so giving and> > kind toward his baby brother with Autism. Treats him like his own> > child. He watches me and sees my needs before I even recognize that I> > have a need. I thank God this morning for him. He makes my heart sing.> > > > Mornings like this and moments when I am filled with this heartstopping> > love....these are the things that make me struggle against death. I can> > see the love in the eyes of these needy grandchildren (from a broken and> > violent family) and know that God is using me to help build their lives.> > Who else is there except me that can love them like I can. My home and> > my arms have always been their safe place. Who else will fill that need> > with such love. When I find myself wondering why God continues to allow> > me to live in the face of such devastating illness and the purpose of my> > remaining here in such a restricted manner of life, I look at the faces> > of these 5 children and I see the answer.> > > > These children have found themselves living with us off and on over the> > years of their young lives. What if we had not been here? What if we> > had put our comfort and needs before theirs. It has not been easy. Our> > home is small. Our life has been structured around their needs. God> > surely has used us to nurture these sweet children that he loves so> > much. In the end, I wonder who has needed whom the most. They are such> > good medicine.> > > > I started this post to let you know that finally after weeks of feeling> > like everyday was my last day, of seeing no results to my meds, of total> > frustration.....yesterday I felt some degree of improvement. This> > morning I feel it too. I pray that this means this medication is> > kicking in. I just want a few more mornings to spend with my Dylan, a> > few more wet naked (just out of the tub) hugs from my little brain> > impaired baby, a few more sweet I love Mamaw pictures from 7 to> > hang on my wall, a couple more bear hugs from my big old football> > playing grandson with the big dimples, a few more intimate nighttime> > talks with my 14 year old granddaughter who has been like a growth on my> > side since birth. She is now trying to be so aloof and cool....the> > normal teenage attitude.....yet, while she is still in front of the> > house waiting for the bus texts me to tell me she loves me. I thank God> > for yesterday and I thank him for this morning. I beg him for one more> > day. God knows the needs of these children and he knows the desire of> > my heart. I must trust his will.> > > > Long, long post. Sorry. Continue to pray. I had one good day and I am> > ecstatic.> > > > Hugs, Joyce D.> > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension> > 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) > > Rejected for Transplant 2006> > .....I will not forget you. Behold, I have engraved you on the palm of> > my hands. Isaiah 49: 15-16> >>