Running on empty

[Guest guest]

Terri,

my heart truly goes out to you...I too was up most of the night, stressing and

feeling like I am running on empty...unsupported and the 'rock' of my family,

expected to do all and fix all.. our problems are different...fortunately, we do

not have to worry quite so much about the finances...my house is small and seems

a bit of a shambles, but I do not have to worry that I will still have it to

shelter me...

Tomorrow is our first IEP meeting for my daughter (16), and we have been

fighting for it for 9 months...I am terrified... is there an advocacy group in

your area? We have one (Southern Calif) called TASK that offers advice and

workshops to parents...and we have had a similar problem in that my daughter is

in advanced classes. The school's position has been that they only need to

provide the minimum to her so technically they consider her math, science, and

language complete...but she is college bound. The advocacy representatives

told me that the school must provide her the education for the level she is

at...e.g. she tested into a special magnet program upon entrance to the high

school - to offer her less than that course work would constitute discrimination

based on her inability to attend school regularly. If you can find a local

advocacy group, they generally offer quite a bit of guidance for free and they

can probably help find the legal basis so the school must

provide what your girls are entitled too. I know you are exhausted...I get so

angry soome times that I have had to put so much energy into what is already her

legal right...and I know you have so much else to deal with...but if you have

access to a computer, or you can talk to any other parents of kids with IEP's, I

bet someone can direct you to the help you need.

Have you explained to your family that although you would like to reciprocate

with the gift giving, you are not in a position to do so? One would hope that

family, above all, would be understanding during the rough times.

I know it seems overwhelming and relentless right now...it will get

better...your girls are so fortunate to have you to be their voice and to

advocate for them! You are a strong person! You said it yourself...it feels

like you will die ...but you know you will get through this...it doesn't sound

like you have much opportunity, but do you take any time to do something to

nurture yourself? Even once a week, for an hour? Take a walk by

yourself...take a bubble bath...curl up and watch a favorite movie...have a cup

of coffee or tea with a girlfriend....? It is difficult to remember or to force

ourselves to take a little time for ourselves...but it is vital - you must take

care of yourself!

My thoughts and prayers are with you and your family, Terri - I wish I was close

enough to give you and DH a night out...or something just for you.

mom to , 16, CVID, + + +

cerdaclan <tcerda@...> wrote: You know,

when things get tough....I think about just cutting

everything out of my life and curling up in a ball....I told a

friend yesterday that I would not be here (in this forum) for a

while. But after coming a bit to my senses this morning, I realize

that this is likely the only place that people understand...where I

can get support to stay afloat.

I was so excited in here a few weeks ago when it seemed things were

going our way....we thought we had a teacher for the girls....we

thought the Beckett waiver would be cut and dry.....we thought

things were looking up. Yesterday, I sat and watched a news story

that was done about our family on a copy DVD of the broadcast....and

I fell apart realizing that it just doesn't change. I have my

precious daughter who I am worried about, but the docs won't

respond. I have the school district that told me that they will not

write an IEP for my children because they are too far ahead and that

they will not write an IEP until they fall behind....but in the

meantime, if I want a teacher, they will teach them at an age

appropriate level....not a level that they are functioning at. I

have piles of paperwork for the Beckett Waiver, but the docs

won't get the paperwork done and submitted to support the

application...it isn't that they won't....they are supportive of

it...they are just too busy to get it done and I have a deadline of

December 4th.

Then yesterday, my husbands employer...the lovely federal government

decided to give all of their dedicated police officers a special

christmas gift....they cut his monthly paycheck by over $800 without

warning. We stayed up all night last night panicing.....he is ready

to stand out on a street corner with a sign that reads " will enforce

laws and protect your country for groceries " . Our home is falling

apart. We are living out of a 16cu foot fridge that has only enough

room for our medicine and a small amount of groceries.

I am waking up most mornings feeling like I am dying.....I am so

exhausted. I don't understand....I don't get it. I ask what I have

done to deserve this. I have spent so much of my life helping

others....giving.....supporting.....never with expectations....but

at some level....I wonder why nothing good ever happens to us.....

In my heart....I know I won't die....I know that we will be ok.....I

know that good things happen to us....I remind myself that there are

so many people who have it so much worse than we do. I know that,

because of who I am....I will get over this and put it behind me and

keep pushing ahead in hopes that just one thing will go the right

way. But here we are at Christmas, and my husband and I have

realized that we will not be able to get gifts for eachother this

year....that my family will be angry with me when their gift giving

is not reciprocated......and frankly, we are not sure how much

longer we will have a home. I spend day after day being the " rock "

for this family, but I feel that I am crumbling.

Don't worry, I am sure I will be better and over this in a few

days....perhaps even a few hours....but for now, I need to whine a

bit.

Terri (mom, 46, Molly 6 and Maggie 4 PIDers....probably CID...but

who knows)

---------------------------------

Access over 1 million songs - Music Unlimited.

[Guest guest]

Oh my goodness Terri, how totally overwhelming for you. I send you a big

hug, but that's obviously not enough.

Is there anyone you can talk to ? Do the girls have a social worker, or

even your family doctor ? You need some local help and no doubt some

respite and I'm hoping there are organizations out there somewhere who will

recognize your desperation and offer you some hope.

Hang in there - your girls need you and things WILL get better. And you

know that this is a wonderful forum for ranting moms ! (I'm one too at times

!)

Kim, Mom to (almost 5 with Hyper IgE, they think)

[Guest guest]

I am so sorry that you are feeling this way and do hope that things start

looking up for you. I understand your feelings because right now we are one

paycheck away from not being able to pay either rent or utilities. It is taking

everything that my dh has in order to keep them paid on time. I know the feeling

of not being able to get gifts for your family as I am there as well becuase we

don't even have money to get our kids' gifts let alone anyone else. I will get

for my kids before anyone else gets a thing.

Cassie

cerdaclan <tcerda@...> wrote:

You know, when things get tough....I think about just cutting

everything out of my life and curling up in a ball....I told a

friend yesterday that I would not be here (in this forum) for a

while. But after coming a bit to my senses this morning, I realize

that this is likely the only place that people understand...where I

can get support to stay afloat.

I was so excited in here a few weeks ago when it seemed things were

going our way....we thought we had a teacher for the girls....we

thought the Beckett waiver would be cut and dry.....we thought

things were looking up. Yesterday, I sat and watched a news story

that was done about our family on a copy DVD of the broadcast....and

I fell apart realizing that it just doesn't change. I have my

precious daughter who I am worried about, but the docs won't

respond. I have the school district that told me that they will not

write an IEP for my children because they are too far ahead and that

they will not write an IEP until they fall behind....but in the

meantime, if I want a teacher, they will teach them at an age

appropriate level....not a level that they are functioning at. I

have piles of paperwork for the Beckett Waiver, but the docs

won't get the paperwork done and submitted to support the

application...it isn't that they won't....they are supportive of

it...they are just too busy to get it done and I have a deadline of

December 4th.

Then yesterday, my husbands employer...the lovely federal government

decided to give all of their dedicated police officers a special

christmas gift....they cut his monthly paycheck by over $800 without

warning. We stayed up all night last night panicing.....he is ready

to stand out on a street corner with a sign that reads " will enforce

laws and protect your country for groceries " . Our home is falling

apart. We are living out of a 16cu foot fridge that has only enough

room for our medicine and a small amount of groceries.

I am waking up most mornings feeling like I am dying.....I am so

exhausted. I don't understand....I don't get it. I ask what I have

done to deserve this. I have spent so much of my life helping

others....giving.....supporting.....never with expectations....but

at some level....I wonder why nothing good ever happens to us.....

In my heart....I know I won't die....I know that we will be ok.....I

know that good things happen to us....I remind myself that there are

so many people who have it so much worse than we do. I know that,

because of who I am....I will get over this and put it behind me and

keep pushing ahead in hopes that just one thing will go the right

way. But here we are at Christmas, and my husband and I have

realized that we will not be able to get gifts for eachother this

year....that my family will be angry with me when their gift giving

is not reciprocated......and frankly, we are not sure how much

longer we will have a home. I spend day after day being the " rock "

for this family, but I feel that I am crumbling.

Don't worry, I am sure I will be better and over this in a few

days....perhaps even a few hours....but for now, I need to whine a

bit.

Terri (mom, 46, Molly 6 and Maggie 4 PIDers....probably CID...but

who knows)

www.marykay.com/cassieredinger

[Guest guest]

Terri -

Just a note to let you know we are thinking of you guys. We have so totally

been there. I can remember being so frustrated upon being told that my

daughter wasn't having life threatening infections because she was on IVIG

so we didn't qualify for state help, but if we took her off IVIG, she might

qualify. I literally threw my hands in the air and walked away in disgust,

because the alternative involved an eventual jail sentence :-)

By the way, I know someone who might be able to help you in Vegas with the

IEP issue - we had issues in the end, and I ended up having to talk to the

person in charge of special ed for CCSD, who was super helpful - can I pass

along your email to her and see if she can help?

Hang in there my friend.

Dayna

_____

From: [mailto: ] On Behalf Of

cerdaclan

Sent: Tuesday, November 28, 2006 8:39 AM

Subject: Running on empty

You know, when things get tough....I think about just cutting

everything out of my life and curling up in a ball....I told a

friend yesterday that I would not be here (in this forum) for a

while. But after coming a bit to my senses this morning, I realize

that this is likely the only place that people understand...where I

can get support to stay afloat.

I was so excited in here a few weeks ago when it seemed things were

going our way....we thought we had a teacher for the girls....we

thought the Beckett waiver would be cut and dry.....we thought

things were looking up. Yesterday, I sat and watched a news story

that was done about our family on a copy DVD of the broadcast....and

I fell apart realizing that it just doesn't change. I have my

precious daughter who I am worried about, but the docs won't

respond. I have the school district that told me that they will not

write an IEP for my children because they are too far ahead and that

they will not write an IEP until they fall behind....but in the

meantime, if I want a teacher, they will teach them at an age

appropriate level....not a level that they are functioning at. I

have piles of paperwork for the Beckett Waiver, but the docs

won't get the paperwork done and submitted to support the

application...it isn't that they won't....they are supportive of

it...they are just too busy to get it done and I have a deadline of

December 4th.

Then yesterday, my husbands employer...the lovely federal government

decided to give all of their dedicated police officers a special

christmas gift....they cut his monthly paycheck by over $800 without

warning. We stayed up all night last night panicing.....he is ready

to stand out on a street corner with a sign that reads " will enforce

laws and protect your country for groceries " . Our home is falling

apart. We are living out of a 16cu foot fridge that has only enough

room for our medicine and a small amount of groceries.

I am waking up most mornings feeling like I am dying.....I am so

exhausted. I don't understand....I don't get it. I ask what I have

done to deserve this. I have spent so much of my life helping

others....giving.....supporting.....never with expectations....but

at some level....I wonder why nothing good ever happens to us.....

In my heart....I know I won't die....I know that we will be ok.....I

know that good things happen to us....I remind myself that there are

so many people who have it so much worse than we do. I know that,

because of who I am....I will get over this and put it behind me and

keep pushing ahead in hopes that just one thing will go the right

way. But here we are at Christmas, and my husband and I have

realized that we will not be able to get gifts for eachother this

year....that my family will be angry with me when their gift giving

is not reciprocated......and frankly, we are not sure how much

longer we will have a home. I spend day after day being the " rock "

for this family, but I feel that I am crumbling.

Don't worry, I am sure I will be better and over this in a few

days....perhaps even a few hours....but for now, I need to whine a

bit.

Terri (mom, 46, Molly 6 and Maggie 4 PIDers....probably CID...but

who knows)

[Guest guest]

The IEP that Macey has is written under " Other Health Impaired " . She is

considered at or slightly above her peers. We have had this since she was in

early intervention and back then they didn't know what she tested or performed

at. So I don't see how it can be based on performance.

http://dpi.state.wi.us/sped/pdf/elg-ohi-001.pdf

This link takes you to Wisconsin's PDF file for eligibility criteria for an OHI

IEP.

http://www.dekalb.k12.ga.us/support/specialed/health.html

This is Dekalb County, GA. OHI page

Ursula - mom to (14) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://members.cox.net/maceyh

[Guest guest]

Teri-

I feel so bad for you- I know sometimes it feels like it just does not get

better-but then there are other days when things are ok .This certainly can be a

roller coaster ride-and I am sorry that you and your family are experiencing so

many of the " downs " right now.

I think that when you live with a chronic illness and have loved ones with

chronic illness'

that it can really wear down your spirit. If you continue to feel this level

of stress all the time, then I would encourage you to please talk with someone.

Continuous high levels of stress can lead to major serious depression. So

please take care of yourself and monitor your stress levels. When my husband and

I were going through extremely high levels of financial, & emotional stress we

found it difficult to reach out for help- we thought that we should be able to

handle this by ourselves-but we couldn't. We did end up reaching out to others

for help (it was hard to do-but we did it and were able to get out of our last

home without having to go through foreclosure or bankruptcy). We moved to a

smaller home and continue to reach out for emotional help through my daughters

school and a private therapist who only charges us a minium payment. I guess my

point is- don't be afraid to ask others for help and support-its ok because when

you are back on your feet you know that

you will " pay it forward " and I think that is why we are all here-to help each

other through the toughest of times- so please hang in there-and have faith and

hope that things will get better.

with warmest wishes for better days for you and your family-

Sue Petrelli (mom to 15 yr old -CVID)

cerdaclan <tcerda@...> wrote:

You know, when things get tough....I think about just cutting

everything out of my life and curling up in a ball....I told a

friend yesterday that I would not be here (in this forum) for a

while. But after coming a bit to my senses this morning, I realize

that this is likely the only place that people understand...where I

can get support to stay afloat.

I was so excited in here a few weeks ago when it seemed things were

going our way....we thought we had a teacher for the girls....we

thought the Beckett waiver would be cut and dry.....we thought

things were looking up. Yesterday, I sat and watched a news story

that was done about our family on a copy DVD of the broadcast....and

I fell apart realizing that it just doesn't change. I have my

precious daughter who I am worried about, but the docs won't

respond. I have the school district that told me that they will not

write an IEP for my children because they are too far ahead and that

they will not write an IEP until they fall behind....but in the

meantime, if I want a teacher, they will teach them at an age

appropriate level....not a level that they are functioning at. I

have piles of paperwork for the Beckett Waiver, but the docs

won't get the paperwork done and submitted to support the

application...it isn't that they won't....they are supportive of

it...they are just too busy to get it done and I have a deadline of

December 4th.

Then yesterday, my husbands employer...the lovely federal government

decided to give all of their dedicated police officers a special

christmas gift....they cut his monthly paycheck by over $800 without

warning. We stayed up all night last night panicing.....he is ready

to stand out on a street corner with a sign that reads " will enforce

laws and protect your country for groceries " . Our home is falling

apart. We are living out of a 16cu foot fridge that has only enough

room for our medicine and a small amount of groceries.

I am waking up most mornings feeling like I am dying.....I am so

exhausted. I don't understand....I don't get it. I ask what I have

done to deserve this. I have spent so much of my life helping

others....giving.....supporting.....never with expectations....but

at some level....I wonder why nothing good ever happens to us.....

In my heart....I know I won't die....I know that we will be ok.....I

know that good things happen to us....I remind myself that there are

so many people who have it so much worse than we do. I know that,

because of who I am....I will get over this and put it behind me and

keep pushing ahead in hopes that just one thing will go the right

way. But here we are at Christmas, and my husband and I have

realized that we will not be able to get gifts for eachother this

year....that my family will be angry with me when their gift giving

is not reciprocated......and frankly, we are not sure how much

longer we will have a home. I spend day after day being the " rock "

for this family, but I feel that I am crumbling.

Don't worry, I am sure I will be better and over this in a few

days....perhaps even a few hours....but for now, I need to whine a

bit.

Terri (mom, 46, Molly 6 and Maggie 4 PIDers....probably CID...but

who knows)

[Guest guest]

Teri-

I feel so bad for you- I know sometimes it feels like it just does not get

better-but then there are other days when things are ok .This certainly can be a

roller coaster ride-and I am sorry that you and your family are experiencing so

many of the " downs " right now.

I think that when you live with a chronic illness and have loved ones with

chronic illness'

that it can really wear down your spirit. If you continue to feel this level

of stress all the time, then I would encourage you to please talk with someone.

Continuous high levels of stress can lead to major serious depression. So

please take care of yourself and monitor your stress levels. When my husband and

I were going through extremely high levels of financial, & emotional stress we

found it difficult to reach out for help- we thought that we should be able to

handle this by ourselves-but we couldn't. We did end up reaching out to others

for help (it was hard to do-but we did it and were able to get out of our last

home without having to go through foreclosure or bankruptcy). We moved to a

smaller home and continue to reach out for emotional help through my daughters

school and a private therapist who only charges us a minium payment. I guess my

point is- don't be afraid to ask others for help and support-its ok because when

you are back on your feet you know that

you will " pay it forward " and I think that is why we are all here-to help each

other through the toughest of times- so please hang in there-and have faith and

hope that things will get better.

with warmest wishes for better days for you and your family-

Sue Petrelli (mom to 15 yr old -CVID)

cerdaclan <tcerda@...> wrote:

You know, when things get tough....I think about just cutting

everything out of my life and curling up in a ball....I told a

friend yesterday that I would not be here (in this forum) for a

while. But after coming a bit to my senses this morning, I realize

that this is likely the only place that people understand...where I

can get support to stay afloat.

I was so excited in here a few weeks ago when it seemed things were

going our way....we thought we had a teacher for the girls....we

thought the Beckett waiver would be cut and dry.....we thought

things were looking up. Yesterday, I sat and watched a news story

that was done about our family on a copy DVD of the broadcast....and

I fell apart realizing that it just doesn't change. I have my

precious daughter who I am worried about, but the docs won't

respond. I have the school district that told me that they will not

write an IEP for my children because they are too far ahead and that

they will not write an IEP until they fall behind....but in the

meantime, if I want a teacher, they will teach them at an age

appropriate level....not a level that they are functioning at. I

have piles of paperwork for the Beckett Waiver, but the docs

won't get the paperwork done and submitted to support the

application...it isn't that they won't....they are supportive of

it...they are just too busy to get it done and I have a deadline of

December 4th.

Then yesterday, my husbands employer...the lovely federal government

decided to give all of their dedicated police officers a special

christmas gift....they cut his monthly paycheck by over $800 without

warning. We stayed up all night last night panicing.....he is ready

to stand out on a street corner with a sign that reads " will enforce

laws and protect your country for groceries " . Our home is falling

apart. We are living out of a 16cu foot fridge that has only enough

room for our medicine and a small amount of groceries.

I am waking up most mornings feeling like I am dying.....I am so

exhausted. I don't understand....I don't get it. I ask what I have

done to deserve this. I have spent so much of my life helping

others....giving.....supporting.....never with expectations....but

at some level....I wonder why nothing good ever happens to us.....

In my heart....I know I won't die....I know that we will be ok.....I

know that good things happen to us....I remind myself that there are

so many people who have it so much worse than we do. I know that,

because of who I am....I will get over this and put it behind me and

keep pushing ahead in hopes that just one thing will go the right

way. But here we are at Christmas, and my husband and I have

realized that we will not be able to get gifts for eachother this

year....that my family will be angry with me when their gift giving

is not reciprocated......and frankly, we are not sure how much

longer we will have a home. I spend day after day being the " rock "

for this family, but I feel that I am crumbling.

Don't worry, I am sure I will be better and over this in a few

days....perhaps even a few hours....but for now, I need to whine a

bit.

Terri (mom, 46, Molly 6 and Maggie 4 PIDers....probably CID...but

who knows)

[Guest guest]

Running on empty—boy, that probably describes most of us on the list, huh?

I’ve been reading—trying to keep up, anyway. I am not sure whose hubby got

the paycheck cut. Sorry to hear about that. I know it likely sounds trite,

but hang in there. God always provides. My hubby was laid off for nine

months, we had to pay $1056 in COBRA to keep coverage so the boys could get

IVIG (and we had to pay $1600 a month to get it with insurance!) -- I

don’t say that to complain…but rather to hopefully give you hope. Every day

of the 9 month lay off I would wake up and tell myself that God was

preparing a better place for us and that all would be well. I wanted to

fast forward through the pain, angst and struggle…… and just get to the

place God was preparing! Ha ha. Somehow he managed to get contract work

until he landed a full-time job. It was a hard 9 months not knowing if he’d

get paid anything at all each month.

I know how hard it is when you struggle and seem to have no one that helps

or offers help. Especially when you help others often. You did nothing to

deserve what has happened – God doesn’t work that way. Bad things happen….

When people ask me how I cope with sick kids, I tell them we have no choice

and that I am not stronger than anyone else—we deal with what we are given.

The other thing is that I realize we all suffer in life and we all die. No

one is exempt from suffering. Sure, there is a degree to it, but we all

suffer. Some people are incapacitated by even the smallest load of

suffering, so perhaps you have friends who want to help, but have struggles

of their own? Or sometimes people are afraid to help…. Don’t know what to

say or do.

I don’t say this to be trite-- God is preparing a better place for you.

You will find yourself in a better place later and realize that without the

struggles and pain to get there, it would not have been as sweet a reward.

As for Christmas, don’t worry about gifts..can you give your family a subtle

message that gift giving isn’t the REASON for the SEASON? My parents do not

get it AT ALL. So we get them small gifts –and the sad thing is because

they expect it, we never put much thought into the gifts we give. They have

gotten mad when we only send a card fro birthdays – even when was in

the hospital b/c they were ruling out leukemia. Kid you not. My parents

sent me an email a few weeks back complaining about a dental bill they will

have and one medical bill….so I finally just emailed them back and listed

all of our medical expenses and bills. Never heard a word back. LOL

Some people just don’t get it. We can rack our brains and bang our heads

against a wall trying to understand why they don’t get it. I’ve just given

up trying to understand why people don’t get it.

In 5 ½ years in our last town only one time did a friend from church bring a

meal. Through all of the hospitalizations, the 3 hour round trips to all of

our doctors and hospitals, etc…one time. We now have a wonderful church

family—when J was hospitalized, we had 3 meals brought to us when he got

out. It was a blessing. He had his neurosurgery and was in and the day we

got back, he had to go back in because he developed a fever and we found out

he had an infection (cellulitis at the incision site) and we spent a few

more days in the hospital. Our friends helped us with the fundraiser we do

each year to raise money for research and education of the disease they

have… this is the first time we’ve had help like that==in a LONG time. The

boys were diagnosed in San and our friends there were gems.

Anyway….. I hope that you can find some support. I will be praying for

that, too.

Peace Be With You,

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

[Guest guest]

Running on empty—boy, that probably describes most of us on the list, huh?

I’ve been reading—trying to keep up, anyway. I am not sure whose hubby got

the paycheck cut. Sorry to hear about that. I know it likely sounds trite,

but hang in there. God always provides. My hubby was laid off for nine

months, we had to pay $1056 in COBRA to keep coverage so the boys could get

IVIG (and we had to pay $1600 a month to get it with insurance!) -- I

don’t say that to complain…but rather to hopefully give you hope. Every day

of the 9 month lay off I would wake up and tell myself that God was

preparing a better place for us and that all would be well. I wanted to

fast forward through the pain, angst and struggle…… and just get to the

place God was preparing! Ha ha. Somehow he managed to get contract work

until he landed a full-time job. It was a hard 9 months not knowing if he’d

get paid anything at all each month.

I know how hard it is when you struggle and seem to have no one that helps

or offers help. Especially when you help others often. You did nothing to

deserve what has happened – God doesn’t work that way. Bad things happen….

When people ask me how I cope with sick kids, I tell them we have no choice

and that I am not stronger than anyone else—we deal with what we are given.

The other thing is that I realize we all suffer in life and we all die. No

one is exempt from suffering. Sure, there is a degree to it, but we all

suffer. Some people are incapacitated by even the smallest load of

suffering, so perhaps you have friends who want to help, but have struggles

of their own? Or sometimes people are afraid to help…. Don’t know what to

say or do.

I don’t say this to be trite-- God is preparing a better place for you.

You will find yourself in a better place later and realize that without the

struggles and pain to get there, it would not have been as sweet a reward.

As for Christmas, don’t worry about gifts..can you give your family a subtle

message that gift giving isn’t the REASON for the SEASON? My parents do not

get it AT ALL. So we get them small gifts –and the sad thing is because

they expect it, we never put much thought into the gifts we give. They have

gotten mad when we only send a card fro birthdays – even when was in

the hospital b/c they were ruling out leukemia. Kid you not. My parents

sent me an email a few weeks back complaining about a dental bill they will

have and one medical bill….so I finally just emailed them back and listed

all of our medical expenses and bills. Never heard a word back. LOL

Some people just don’t get it. We can rack our brains and bang our heads

against a wall trying to understand why they don’t get it. I’ve just given

up trying to understand why people don’t get it.

In 5 ½ years in our last town only one time did a friend from church bring a

meal. Through all of the hospitalizations, the 3 hour round trips to all of

our doctors and hospitals, etc…one time. We now have a wonderful church

family—when J was hospitalized, we had 3 meals brought to us when he got

out. It was a blessing. He had his neurosurgery and was in and the day we

got back, he had to go back in because he developed a fever and we found out

he had an infection (cellulitis at the incision site) and we spent a few

more days in the hospital. Our friends helped us with the fundraiser we do

each year to raise money for research and education of the disease they

have… this is the first time we’ve had help like that==in a LONG time. The

boys were diagnosed in San and our friends there were gems.

Anyway….. I hope that you can find some support. I will be praying for

that, too.

Peace Be With You,

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

[Guest guest]

I have been so bone-tired and achy, it's been everything I can do to

get up and make it to work every day. I used up all my sick and

vacation days taking care of my daughter after she got back from

Africa, so staying home is not an option. We have company coming for

the night tomorrow, and my granddaughters are coming Saturday for the

rest of the weekend. This is the only time they can come, and I am so

looking forward to it on one level. On another one, I just want to go

somewhere and stay in bed for a week. That in itself makes me feel

like a real bad mom/nana! I keep thinking the flare will pass without

resorting to prednisone, but I still feel awful every day when I get

up. Sometimes being a single mom is really hard.I try to be positive

and be a blessing to others, but I really am running on empty this

week.

Thanks for listening.