Re: Does anyone else have a difficult time during the holidays?

[Guest guest]

, are there any support groups for moms of special needs kids or a

UMDF chapter near you?? I think that would really help you- it has me.

As you said, it helps to share with Moms

who just “ get it”.

Take care and I will keep you in my

prayers.

Suzanne M. man

From: nu12002

Sent: Wednesday, December 01, 2004

7:50 AM

To: Mito

Subject: Does anyone else have a difficult time

during the holidays?

My son is 5 1/2 now so you would think I'd handle

the holidays

better. But every year around this time I

seem to get depressed. My

is severely delayed and I guess buying Xmas

presents reminds me

that he hasn't really improved in 5 years. In

fact each year he

seems to develop more issues. He was born in

September so that first

Xmas we were blissfully unaware of any

problems. I also have an

older son who may be autistic and/or bipolar(mito related?) He

is

becoming more of a behavioral problem lately.

I normally am very grateful that my is in

better health than

some. I can't even imagine those who have

lost their angels and what

they go through. But I am usually very aware

of how fortunate we

are. But this time of year is just really

difficult for me. My

husband is having a hard time being patient with

me. He's such a

wonderful husband & father and very calm and

rational. But when my

mood is a little dark it seems to affect him as

well.

Don't get me wrong; I'm not lying in bed all

day. I get up each

morning and do my routine, I cooked Thanksgiving

dinner & I helped

decorate for Xmas already. But inside I'm

just so sad. I call it

being functionally depressed-LOL

I've told my husband that my heart just aches for

both my sons. Any

parent wants the best for their kids and it kills

me that they have

so many issues. I mourn a little for the

" normal " kids that they

should have been. I also carry the guilt

that their issues are my

fault. I didn't do anything wrong but since

I carried them I feel

that I'm to blame. I don't say that so

someone can absolve my

guilt. I tell my husband that I will always

feel a little

responsible no matter what the docs say.

I'm sorry if I made anyone else sad. I'm

sure you all have bad

days/weeks. I guess it helps to get it

out. Thanks for listening:)

Blessings,

Please

contact mito-owner with any problems or questions.

[Guest guest]

Yes, sometimes the holiday season can cause some depression. I think for me

it is mostly the extra business that causes extra exhaustion. Also the

weather with the darkness extra early can cause many people to have mood

swings. I think we as moms tend to have mood swings for many reasons (even

hormonal-LOL) but we also are amazing to most people. If I could count how

many times I have been told I am " amazing to handle everything " ... My

response is usually thank you and that I just do what I have to, and what

else should I do? There will obviously be times we mourn some for what our

child " might " have been, but I see what my child does do and am so grateful

for what I see. In Asenath's case, she has been through so much and yet she

still keeps smiling and doing the best she can. I start to get sadder when

she is struggling (especially with pain) like last week, but when she is

doing better, it is such a relief and I am so grateful for her health,

knowing what could be. I am sure those of you who have lost loved ones, it

must be very hard during the holidays, knowing they are no longer there to

spend it with you, and the memories I am sure are very mixed. I will try to

say some extra prayers for all of you this season. May God wrap His arms

around you and comfort you.

I am so thankful this group is here! This is why! So we can hopefully

bring comfort to one another and " support " one another in many ways. Hope I

am not sounding too mushy here.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Does anyone else have a difficult time during the holidays?

>

>

> My son is 5 1/2 now so you would think I'd handle the holidays

> better. But every year around this time I seem to get depressed. My

> is severely delayed and I guess buying Xmas presents reminds me

> that he hasn't really improved in 5 years. In fact each year he

> seems to develop more issues. He was born in September so that first

> Xmas we were blissfully unaware of any problems. I also have an

> older son who may be autistic and/or bipolar(mito related?) He is

> becoming more of a behavioral problem lately.

> I normally am very grateful that my is in better health than

> some. I can't even imagine those who have lost their angels and what

> they go through. But I am usually very aware of how fortunate we

> are. But this time of year is just really difficult for me. My

> husband is having a hard time being patient with me. He's such a

> wonderful husband & father and very calm and rational. But when my

> mood is a little dark it seems to affect him as well.

> Don't get me wrong; I'm not lying in bed all day. I get up each

> morning and do my routine, I cooked Thanksgiving dinner & I helped

> decorate for Xmas already. But inside I'm just so sad. I call it

> being functionally depressed-LOL

> I've told my husband that my heart just aches for both my sons. Any

> parent wants the best for their kids and it kills me that they have

> so many issues. I mourn a little for the " normal " kids that they

> should have been. I also carry the guilt that their issues are my

> fault. I didn't do anything wrong but since I carried them I feel

> that I'm to blame. I don't say that so someone can absolve my

> guilt. I tell my husband that I will always feel a little

> responsible no matter what the docs say.

> I'm sorry if I made anyone else sad. I'm sure you all have bad

> days/weeks. I guess it helps to get it out. Thanks for listening:)

> Blessings,

>

>

>

>

>

>

>

>

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

>

[Guest guest]

Yes, sometimes the holiday season can cause some depression. I think for me

it is mostly the extra business that causes extra exhaustion. Also the

weather with the darkness extra early can cause many people to have mood

swings. I think we as moms tend to have mood swings for many reasons (even

hormonal-LOL) but we also are amazing to most people. If I could count how

many times I have been told I am " amazing to handle everything " ... My

response is usually thank you and that I just do what I have to, and what

else should I do? There will obviously be times we mourn some for what our

child " might " have been, but I see what my child does do and am so grateful

for what I see. In Asenath's case, she has been through so much and yet she

still keeps smiling and doing the best she can. I start to get sadder when

she is struggling (especially with pain) like last week, but when she is

doing better, it is such a relief and I am so grateful for her health,

knowing what could be. I am sure those of you who have lost loved ones, it

must be very hard during the holidays, knowing they are no longer there to

spend it with you, and the memories I am sure are very mixed. I will try to

say some extra prayers for all of you this season. May God wrap His arms

around you and comfort you.

I am so thankful this group is here! This is why! So we can hopefully

bring comfort to one another and " support " one another in many ways. Hope I

am not sounding too mushy here.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Does anyone else have a difficult time during the holidays?

>

>

> My son is 5 1/2 now so you would think I'd handle the holidays

> better. But every year around this time I seem to get depressed. My

> is severely delayed and I guess buying Xmas presents reminds me

> that he hasn't really improved in 5 years. In fact each year he

> seems to develop more issues. He was born in September so that first

> Xmas we were blissfully unaware of any problems. I also have an

> older son who may be autistic and/or bipolar(mito related?) He is

> becoming more of a behavioral problem lately.

> I normally am very grateful that my is in better health than

> some. I can't even imagine those who have lost their angels and what

> they go through. But I am usually very aware of how fortunate we

> are. But this time of year is just really difficult for me. My

> husband is having a hard time being patient with me. He's such a

> wonderful husband & father and very calm and rational. But when my

> mood is a little dark it seems to affect him as well.

> Don't get me wrong; I'm not lying in bed all day. I get up each

> morning and do my routine, I cooked Thanksgiving dinner & I helped

> decorate for Xmas already. But inside I'm just so sad. I call it

> being functionally depressed-LOL

> I've told my husband that my heart just aches for both my sons. Any

> parent wants the best for their kids and it kills me that they have

> so many issues. I mourn a little for the " normal " kids that they

> should have been. I also carry the guilt that their issues are my

> fault. I didn't do anything wrong but since I carried them I feel

> that I'm to blame. I don't say that so someone can absolve my

> guilt. I tell my husband that I will always feel a little

> responsible no matter what the docs say.

> I'm sorry if I made anyone else sad. I'm sure you all have bad

> days/weeks. I guess it helps to get it out. Thanks for listening:)

> Blessings,

>

>

>

>

>

>

>

>

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

>

[Guest guest]

Hi ::

We all get this way. I like the term my sister uses. It's not normal

children but average children. What the average child can do. So I use

that in regards to Leah. May be for me as time has gone on here I have

accepted things to a certain degree and know this is Leah. She is 6

years old and functions anywhere from a 2 year old and does amazingly

some things that a 6 year old may do. Like she likes to play with a

vanity mirror and comb my hair and sometimes pretends to put on

lipstick. When she does these things I accept them with an open heart

and cheer that accomplishment on. Some days I'm more aware of it than

others. Like when I'm playground supervisor at our elementary school

and see other 6 year olds running and playing and thinking that Leah

should be a part of them. But I also see how her two brothers enjoy

Leah for who she is and they play with her and try to include her in

their games. Even our neighbor girl plays with Leah alot. But my

personality is the kind that I try to look at the positive of things and

not dwell on the negative because I hate that feeling of being down and

out. And believe me right now I should feel that way because my husband

still does not have a full time job and we found out we only have two

more unemployment checks coming in; yikes!! I don't down that Leah

can't play with toys, I get frustrated with the toy companies that they

don't come up with toys in a different way for our children to play. So

I believe that is my fight in life is make others aware of special needs

children and what they can do and celebrate that. Plus I look at it

that even though I have a special needs child I can still volunteer in

my boys school room and even bring Leah with me to help me out.

Another thought may be, (and I hope you don't take this wrong) is to

talk to a counselor about this and that person may be able to help you

work through your feelings. Some times its just nice to be able to

talk to some one and get it all out in the open. But each person is

different in dealing with issues. I hope that this year will be a

celebration of family togetherness and all that your children have

achieved this year. I'm sure there are plenty and you have achieved a

lot as a mom and a wife. Pat yourself on the back for how you do

things. Well off to get ready to go and volunteer in my sons room

today. Take care . I've been where you are at and still get that

way. But I just try to look at it in a different light now.

Nerenhausen

mom to Leah

nu12002 wrote:

>My son is 5 1/2 now so you would think I'd handle the holidays

>better. But every year around this time I seem to get depressed. My

>is severely delayed and I guess buying Xmas presents reminds me

>that he hasn't really improved in 5 years. In fact each year he

>seems to develop more issues. He was born in September so that first

>Xmas we were blissfully unaware of any problems. I also have an

>older son who may be autistic and/or bipolar(mito related?) He is

>becoming more of a behavioral problem lately.

>I normally am very grateful that my is in better health than

>some. I can't even imagine those who have lost their angels and what

>they go through. But I am usually very aware of how fortunate we

>are. But this time of year is just really difficult for me. My

>husband is having a hard time being patient with me. He's such a

>wonderful husband & father and very calm and rational. But when my

>mood is a little dark it seems to affect him as well.

>Don't get me wrong; I'm not lying in bed all day. I get up each

>morning and do my routine, I cooked Thanksgiving dinner & I helped

>decorate for Xmas already. But inside I'm just so sad. I call it

>being functionally depressed-LOL

>I've told my husband that my heart just aches for both my sons. Any

>parent wants the best for their kids and it kills me that they have

>so many issues. I mourn a little for the " normal " kids that they

>should have been. I also carry the guilt that their issues are my

>fault. I didn't do anything wrong but since I carried them I feel

>that I'm to blame. I don't say that so someone can absolve my

>guilt. I tell my husband that I will always feel a little

>responsible no matter what the docs say.

>I'm sorry if I made anyone else sad. I'm sure you all have bad

>days/weeks. I guess it helps to get it out. Thanks for listening:)

>Blessings,

>

>

>

>

>

>

>

>

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

>

[Guest guest]

Hi ::

We all get this way. I like the term my sister uses. It's not normal

children but average children. What the average child can do. So I use

that in regards to Leah. May be for me as time has gone on here I have

accepted things to a certain degree and know this is Leah. She is 6

years old and functions anywhere from a 2 year old and does amazingly

some things that a 6 year old may do. Like she likes to play with a

vanity mirror and comb my hair and sometimes pretends to put on

lipstick. When she does these things I accept them with an open heart

and cheer that accomplishment on. Some days I'm more aware of it than

others. Like when I'm playground supervisor at our elementary school

and see other 6 year olds running and playing and thinking that Leah

should be a part of them. But I also see how her two brothers enjoy

Leah for who she is and they play with her and try to include her in

their games. Even our neighbor girl plays with Leah alot. But my

personality is the kind that I try to look at the positive of things and

not dwell on the negative because I hate that feeling of being down and

out. And believe me right now I should feel that way because my husband

still does not have a full time job and we found out we only have two

more unemployment checks coming in; yikes!! I don't down that Leah

can't play with toys, I get frustrated with the toy companies that they

don't come up with toys in a different way for our children to play. So

I believe that is my fight in life is make others aware of special needs

children and what they can do and celebrate that. Plus I look at it

that even though I have a special needs child I can still volunteer in

my boys school room and even bring Leah with me to help me out.

Another thought may be, (and I hope you don't take this wrong) is to

talk to a counselor about this and that person may be able to help you

work through your feelings. Some times its just nice to be able to

talk to some one and get it all out in the open. But each person is

different in dealing with issues. I hope that this year will be a

celebration of family togetherness and all that your children have

achieved this year. I'm sure there are plenty and you have achieved a

lot as a mom and a wife. Pat yourself on the back for how you do

things. Well off to get ready to go and volunteer in my sons room

today. Take care . I've been where you are at and still get that

way. But I just try to look at it in a different light now.

Nerenhausen

mom to Leah

nu12002 wrote:

>My son is 5 1/2 now so you would think I'd handle the holidays

>better. But every year around this time I seem to get depressed. My

>is severely delayed and I guess buying Xmas presents reminds me

>that he hasn't really improved in 5 years. In fact each year he

>seems to develop more issues. He was born in September so that first

>Xmas we were blissfully unaware of any problems. I also have an

>older son who may be autistic and/or bipolar(mito related?) He is

>becoming more of a behavioral problem lately.

>I normally am very grateful that my is in better health than

>some. I can't even imagine those who have lost their angels and what

>they go through. But I am usually very aware of how fortunate we

>are. But this time of year is just really difficult for me. My

>husband is having a hard time being patient with me. He's such a

>wonderful husband & father and very calm and rational. But when my

>mood is a little dark it seems to affect him as well.

>Don't get me wrong; I'm not lying in bed all day. I get up each

>morning and do my routine, I cooked Thanksgiving dinner & I helped

>decorate for Xmas already. But inside I'm just so sad. I call it

>being functionally depressed-LOL

>I've told my husband that my heart just aches for both my sons. Any

>parent wants the best for their kids and it kills me that they have

>so many issues. I mourn a little for the " normal " kids that they

>should have been. I also carry the guilt that their issues are my

>fault. I didn't do anything wrong but since I carried them I feel

>that I'm to blame. I don't say that so someone can absolve my

>guilt. I tell my husband that I will always feel a little

>responsible no matter what the docs say.

>I'm sorry if I made anyone else sad. I'm sure you all have bad

>days/weeks. I guess it helps to get it out. Thanks for listening:)

>Blessings,

>

>

>

>

>

>

>

>

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

>

[Guest guest]

,

The holidays have always been hard for me as we have always lived away from our families and I would be jealous of my brother and all the talk about getting together with our Mom and Dad and all the great times they were having. Then something happened and I realized I had a wonderful family right with me in my children. As they grew and married our family begin to grow and we established our own traditions. The grandchildren have made the holidays so much better!

I was doing really well this year then I went Christmas shopping. I did great until I tried to shop for Audrey. It is so hard knowing what to get her. I just parked my cart and went to Amie's so I could get my Grandma fix for the day from my special little girl, Audrey. When I see her I realize there is more to the holidays than food, fun and presents.

A few years ago my family, my son and daughter and their spouses, and my husband and I were not on good terms. Somethings had happened that I won't go into, in fact they aren't even important anymore. Then something, or I should say someone happened into our lives. That someone would be Audrey. I truely believe Audrey was sent to us to heal our family. This past Sunday I had both of my children and their families together at my house for Thanksgiving. It was one of the happiest days of my life. As I sat holding Audrey and my other grandchildren were all running around, I saw Audrey smile and I know she knows what she has done. She, with the help of God, fixed things in my family. Now we truly are a family again.

I think I have gotten a little off the subject, but I just want to say Thanks to my beautiful little Audrey for making things right again. I love her more than she will ever know.

Happy Holidays to my Mito Family,

Kathy, grandma to Audrey, 3 yearsnu12002 wrote:

My son is 5 1/2 now so you would think I'd handle the holidays better. But every year around this time I seem to get depressed. My is severely delayed and I guess buying Xmas presents reminds me that he hasn't really improved in 5 years. In fact each year he seems to develop more issues. He was born in September so that first Xmas we were blissfully unaware of any problems. I also have an older son who may be autistic and/or bipolar(mito related?) He is becoming more of a behavioral problem lately.I normally am very grateful that my is in better health than some. I can't even imagine those who have lost their angels and what they go through. But I am usually very aware of how fortunate we are. But this time of year is just really difficult for me. My husband

is having a hard time being patient with me. He's such a wonderful husband & father and very calm and rational. But when my mood is a little dark it seems to affect him as well.Don't get me wrong; I'm not lying in bed all day. I get up each morning and do my routine, I cooked Thanksgiving dinner & I helped decorate for Xmas already. But inside I'm just so sad. I call it being functionally depressed-LOLI've told my husband that my heart just aches for both my sons. Any parent wants the best for their kids and it kills me that they have so many issues. I mourn a little for the "normal" kids that they should have been. I also carry the guilt that their issues are my fault. I didn't do anything wrong but since I carried them I feel that I'm to blame. I don't say that so someone can absolve my guilt. I tell my husband that I will always feel a little

responsible no matter what the docs say.I'm sorry if I made anyone else sad. I'm sure you all have bad days/weeks. I guess it helps to get it out. Thanks for listening:)Blessings,Please contact mito-owner with any problems or questions.

[Guest guest]

,

The holidays have always been hard for me as we have always lived away from our families and I would be jealous of my brother and all the talk about getting together with our Mom and Dad and all the great times they were having. Then something happened and I realized I had a wonderful family right with me in my children. As they grew and married our family begin to grow and we established our own traditions. The grandchildren have made the holidays so much better!

I was doing really well this year then I went Christmas shopping. I did great until I tried to shop for Audrey. It is so hard knowing what to get her. I just parked my cart and went to Amie's so I could get my Grandma fix for the day from my special little girl, Audrey. When I see her I realize there is more to the holidays than food, fun and presents.

A few years ago my family, my son and daughter and their spouses, and my husband and I were not on good terms. Somethings had happened that I won't go into, in fact they aren't even important anymore. Then something, or I should say someone happened into our lives. That someone would be Audrey. I truely believe Audrey was sent to us to heal our family. This past Sunday I had both of my children and their families together at my house for Thanksgiving. It was one of the happiest days of my life. As I sat holding Audrey and my other grandchildren were all running around, I saw Audrey smile and I know she knows what she has done. She, with the help of God, fixed things in my family. Now we truly are a family again.

I think I have gotten a little off the subject, but I just want to say Thanks to my beautiful little Audrey for making things right again. I love her more than she will ever know.

Happy Holidays to my Mito Family,

Kathy, grandma to Audrey, 3 yearsnu12002 wrote:

My son is 5 1/2 now so you would think I'd handle the holidays better. But every year around this time I seem to get depressed. My is severely delayed and I guess buying Xmas presents reminds me that he hasn't really improved in 5 years. In fact each year he seems to develop more issues. He was born in September so that first Xmas we were blissfully unaware of any problems. I also have an older son who may be autistic and/or bipolar(mito related?) He is becoming more of a behavioral problem lately.I normally am very grateful that my is in better health than some. I can't even imagine those who have lost their angels and what they go through. But I am usually very aware of how fortunate we are. But this time of year is just really difficult for me. My husband

is having a hard time being patient with me. He's such a wonderful husband & father and very calm and rational. But when my mood is a little dark it seems to affect him as well.Don't get me wrong; I'm not lying in bed all day. I get up each morning and do my routine, I cooked Thanksgiving dinner & I helped decorate for Xmas already. But inside I'm just so sad. I call it being functionally depressed-LOLI've told my husband that my heart just aches for both my sons. Any parent wants the best for their kids and it kills me that they have so many issues. I mourn a little for the "normal" kids that they should have been. I also carry the guilt that their issues are my fault. I didn't do anything wrong but since I carried them I feel that I'm to blame. I don't say that so someone can absolve my guilt. I tell my husband that I will always feel a little

responsible no matter what the docs say.I'm sorry if I made anyone else sad. I'm sure you all have bad days/weeks. I guess it helps to get it out. Thanks for listening:)Blessings,Please contact mito-owner with any problems or questions.

[Guest guest]

,

The holidays have always been hard for me as we have always lived away from our families and I would be jealous of my brother and all the talk about getting together with our Mom and Dad and all the great times they were having. Then something happened and I realized I had a wonderful family right with me in my children. As they grew and married our family begin to grow and we established our own traditions. The grandchildren have made the holidays so much better!

I was doing really well this year then I went Christmas shopping. I did great until I tried to shop for Audrey. It is so hard knowing what to get her. I just parked my cart and went to Amie's so I could get my Grandma fix for the day from my special little girl, Audrey. When I see her I realize there is more to the holidays than food, fun and presents.

A few years ago my family, my son and daughter and their spouses, and my husband and I were not on good terms. Somethings had happened that I won't go into, in fact they aren't even important anymore. Then something, or I should say someone happened into our lives. That someone would be Audrey. I truely believe Audrey was sent to us to heal our family. This past Sunday I had both of my children and their families together at my house for Thanksgiving. It was one of the happiest days of my life. As I sat holding Audrey and my other grandchildren were all running around, I saw Audrey smile and I know she knows what she has done. She, with the help of God, fixed things in my family. Now we truly are a family again.

I think I have gotten a little off the subject, but I just want to say Thanks to my beautiful little Audrey for making things right again. I love her more than she will ever know.

Happy Holidays to my Mito Family,

Kathy, grandma to Audrey, 3 yearsnu12002 wrote:

My son is 5 1/2 now so you would think I'd handle the holidays better. But every year around this time I seem to get depressed. My is severely delayed and I guess buying Xmas presents reminds me that he hasn't really improved in 5 years. In fact each year he seems to develop more issues. He was born in September so that first Xmas we were blissfully unaware of any problems. I also have an older son who may be autistic and/or bipolar(mito related?) He is becoming more of a behavioral problem lately.I normally am very grateful that my is in better health than some. I can't even imagine those who have lost their angels and what they go through. But I am usually very aware of how fortunate we are. But this time of year is just really difficult for me. My husband

is having a hard time being patient with me. He's such a wonderful husband & father and very calm and rational. But when my mood is a little dark it seems to affect him as well.Don't get me wrong; I'm not lying in bed all day. I get up each morning and do my routine, I cooked Thanksgiving dinner & I helped decorate for Xmas already. But inside I'm just so sad. I call it being functionally depressed-LOLI've told my husband that my heart just aches for both my sons. Any parent wants the best for their kids and it kills me that they have so many issues. I mourn a little for the "normal" kids that they should have been. I also carry the guilt that their issues are my fault. I didn't do anything wrong but since I carried them I feel that I'm to blame. I don't say that so someone can absolve my guilt. I tell my husband that I will always feel a little

responsible no matter what the docs say.I'm sorry if I made anyone else sad. I'm sure you all have bad days/weeks. I guess it helps to get it out. Thanks for listening:)Blessings,Please contact mito-owner with any problems or questions.

[Guest guest]

,

The holidays have always been hard for me as we have always lived away from our families and I would be jealous of my brother and all the talk about getting together with our Mom and Dad and all the great times they were having. Then something happened and I realized I had a wonderful family right with me in my children. As they grew and married our family begin to grow and we established our own traditions. The grandchildren have made the holidays so much better!

I was doing really well this year then I went Christmas shopping. I did great until I tried to shop for Audrey. It is so hard knowing what to get her. I just parked my cart and went to Amie's so I could get my Grandma fix for the day from my special little girl, Audrey. When I see her I realize there is more to the holidays than food, fun and presents.

A few years ago my family, my son and daughter and their spouses, and my husband and I were not on good terms. Somethings had happened that I won't go into, in fact they aren't even important anymore. Then something, or I should say someone happened into our lives. That someone would be Audrey. I truely believe Audrey was sent to us to heal our family. This past Sunday I had both of my children and their families together at my house for Thanksgiving. It was one of the happiest days of my life. As I sat holding Audrey and my other grandchildren were all running around, I saw Audrey smile and I know she knows what she has done. She, with the help of God, fixed things in my family. Now we truly are a family again.

I think I have gotten a little off the subject, but I just want to say Thanks to my beautiful little Audrey for making things right again. I love her more than she will ever know.

Happy Holidays to my Mito Family,

Kathy, grandma to Audrey, 3 yearsnu12002 wrote:

My son is 5 1/2 now so you would think I'd handle the holidays better. But every year around this time I seem to get depressed. My is severely delayed and I guess buying Xmas presents reminds me that he hasn't really improved in 5 years. In fact each year he seems to develop more issues. He was born in September so that first Xmas we were blissfully unaware of any problems. I also have an older son who may be autistic and/or bipolar(mito related?) He is becoming more of a behavioral problem lately.I normally am very grateful that my is in better health than some. I can't even imagine those who have lost their angels and what they go through. But I am usually very aware of how fortunate we are. But this time of year is just really difficult for me. My husband

is having a hard time being patient with me. He's such a wonderful husband & father and very calm and rational. But when my mood is a little dark it seems to affect him as well.Don't get me wrong; I'm not lying in bed all day. I get up each morning and do my routine, I cooked Thanksgiving dinner & I helped decorate for Xmas already. But inside I'm just so sad. I call it being functionally depressed-LOLI've told my husband that my heart just aches for both my sons. Any parent wants the best for their kids and it kills me that they have so many issues. I mourn a little for the "normal" kids that they should have been. I also carry the guilt that their issues are my fault. I didn't do anything wrong but since I carried them I feel that I'm to blame. I don't say that so someone can absolve my guilt. I tell my husband that I will always feel a little

responsible no matter what the docs say.I'm sorry if I made anyone else sad. I'm sure you all have bad days/weeks. I guess it helps to get it out. Thanks for listening:)Blessings,Please contact mito-owner with any problems or questions.

[Guest guest]

Say Kathy:

Wasn't Amie and Doyle going with Audrey and the gang on a Make A Wish trip

this past November. I thought there was a problem with the one boy being

able to have time off (which still amazed me) and was wondering if they ever

went. So glad you guys got to be together. So glad for Audrey's blessed

smile and what it can bring to others.

Nerenhausen

mom to Leah

kathy boone wrote:

,

The holidays have always been hard for me as we have always lived

away from our families and I would be jealous of my brother and all the talk

about getting together with our Mom and Dad and all the great times they

were having. Then something happened and I realized I had a wonderful family

right with me in my children. As they grew and married our family begin

to grow and we established our own traditions. The grandchildren have made

the holidays so much better!

I was doing really well this year then I went Christmas shopping.

I did great until I tried to shop for Audrey. It is so hard knowing what

to get her. I just parked my cart and went to Amie's so I could get my Grandma

fix for the day from my special little girl, Audrey. When I see her I realize

there is more to the holidays than food, fun and presents.

A few years ago my family, my son and daughter and their spouses,

and my husband and I were not on good terms. Somethings had happened that

I won't go into, in fact they aren't even important anymore. Then something,

or I should say someone happened into our lives. That someone would be Audrey.

I truely believe Audrey was sent to us to heal our family. This past Sunday

I had both of my children and their families together at my house for Thanksgiving.

It was one of the happiest days of my life. As I sat holding Audrey and

my other grandchildren were all running around, I saw Audrey smile and I

know she knows what she has done. She, with the help of God, fixed things

in my family. Now we truly are a family again.

I think I have gotten a little off the subject, but I just want to

say Thanks to my beautiful little Audrey for making things right again.

I love her more than she will ever know.

Happy Holidays to my Mito Family,

Kathy, grandma to Audrey, 3 years

nu12002 wrote:

My son is 5 1/2 now so you would think I'd handle the holidays

better. But every year around this time I seem to get depressed. My

is severely delayed and I guess buying Xmas presents reminds me

that he hasn't really improved in 5 years. In fact each year he

seems to develop more issues. He was born in September so that first

Xmas we were blissfully unaware of any problems. I also have an

older son who may be autistic and/or bipolar(mito related?) He is

becoming more of a behavioral problem lately.

I normally am very grateful that my is in better health than

some. I can't even imagine those who have lost their angels and what

they go through. But I am usually very aware of how fortunate we

are. But this time of year is just really difficult for me. My

husband is having a hard time being patient with me. He's such a

wonderful husband & father and very calm and rational. But when my

mood is a little dark it seems to affect him as well.

Don't get me wrong; I'm not lying in bed all day. I get up each

morning and do my routine, I cooked Thanksgiving dinner & I helped

decorate for Xmas already. But inside I'm just so sad. I call it

being functionally depressed-LOL

I've told my husband that my heart just aches for both my sons. Any

parent wants the best for their kids and it kills me that they have

so many issues. I mourn a little for the "normal" kids that they

should have been. I also carry the guilt that their issues are my

fault. I didn't do anything wrong but since I carried them I feel

that I'm to blame. I don't say that so someone can absolve my

guilt. I tell my husband that I will always feel a little

responsible no matter what the docs say.

I'm sorry if I made anyone else sad. I'm sure you all have bad

days/weeks. I guess it helps to get it out. Thanks for listening:)

Blessings,

Please contact mito-owner with any problems or questions.

Please contact mito-owner with any problems or questions.

This message scanned for

viruses by CoreComm

[Guest guest]

Say Kathy:

Wasn't Amie and Doyle going with Audrey and the gang on a Make A Wish trip

this past November. I thought there was a problem with the one boy being

able to have time off (which still amazed me) and was wondering if they ever

went. So glad you guys got to be together. So glad for Audrey's blessed

smile and what it can bring to others.

Nerenhausen

mom to Leah

kathy boone wrote:

,

The holidays have always been hard for me as we have always lived

away from our families and I would be jealous of my brother and all the talk

about getting together with our Mom and Dad and all the great times they

were having. Then something happened and I realized I had a wonderful family

right with me in my children. As they grew and married our family begin

to grow and we established our own traditions. The grandchildren have made

the holidays so much better!

I was doing really well this year then I went Christmas shopping.

I did great until I tried to shop for Audrey. It is so hard knowing what

to get her. I just parked my cart and went to Amie's so I could get my Grandma

fix for the day from my special little girl, Audrey. When I see her I realize

there is more to the holidays than food, fun and presents.

A few years ago my family, my son and daughter and their spouses,

and my husband and I were not on good terms. Somethings had happened that

I won't go into, in fact they aren't even important anymore. Then something,

or I should say someone happened into our lives. That someone would be Audrey.

I truely believe Audrey was sent to us to heal our family. This past Sunday

I had both of my children and their families together at my house for Thanksgiving.

It was one of the happiest days of my life. As I sat holding Audrey and

my other grandchildren were all running around, I saw Audrey smile and I

know she knows what she has done. She, with the help of God, fixed things

in my family. Now we truly are a family again.

I think I have gotten a little off the subject, but I just want to

say Thanks to my beautiful little Audrey for making things right again.

I love her more than she will ever know.

Happy Holidays to my Mito Family,

Kathy, grandma to Audrey, 3 years

nu12002 wrote:

My son is 5 1/2 now so you would think I'd handle the holidays

better. But every year around this time I seem to get depressed. My

is severely delayed and I guess buying Xmas presents reminds me

that he hasn't really improved in 5 years. In fact each year he

seems to develop more issues. He was born in September so that first

Xmas we were blissfully unaware of any problems. I also have an

older son who may be autistic and/or bipolar(mito related?) He is

becoming more of a behavioral problem lately.

I normally am very grateful that my is in better health than

some. I can't even imagine those who have lost their angels and what

they go through. But I am usually very aware of how fortunate we

are. But this time of year is just really difficult for me. My

husband is having a hard time being patient with me. He's such a

wonderful husband & father and very calm and rational. But when my

mood is a little dark it seems to affect him as well.

Don't get me wrong; I'm not lying in bed all day. I get up each

morning and do my routine, I cooked Thanksgiving dinner & I helped

decorate for Xmas already. But inside I'm just so sad. I call it

being functionally depressed-LOL

I've told my husband that my heart just aches for both my sons. Any

parent wants the best for their kids and it kills me that they have

so many issues. I mourn a little for the "normal" kids that they

should have been. I also carry the guilt that their issues are my

fault. I didn't do anything wrong but since I carried them I feel

that I'm to blame. I don't say that so someone can absolve my

guilt. I tell my husband that I will always feel a little

responsible no matter what the docs say.

I'm sorry if I made anyone else sad. I'm sure you all have bad

days/weeks. I guess it helps to get it out. Thanks for listening:)

Blessings,

Please contact mito-owner with any problems or questions.

Please contact mito-owner with any problems or questions.

This message scanned for

viruses by CoreComm

[Guest guest]

Oh Boy what a loaded question !!!! Sorry But most of this is me

venting.......

God blessed me with my Elijah 2-15-03 and in August(5months old) he

was diagnosed with Leigh's disease. Most of you know that children

with this illness have extreme brain damage and usally die within

2years. At the time he was diagnosed my Eli was in very poor

condition and we thought it was going to happen very quick. We

prepared for him to have all of his firsts and only's. We accepted

the holidays as a full blessing of life. This year the feeling is so

much differant. As we have spent the last year watching Eli Grow and

look healthier then he did once his disease is still killing him

piece by piece. He is now unresponsive and the only thing that

pleases him is to be held. Even that is becoming hard as he is now

42lbs. Last year he could still swing his arms in hopes to hit his

toy. Now there are no toys. Last year we bought him crib toys and it

was so much fun, hard but fun. I cry now as I think of the hurt on

my husbands face as we stay out of the stores this year unable to

find anything for his abilities. We are very tired, stress out and

sad. The holidays bring everything to the surface. I can talk to

people until I am blue and it wont take away the hurt. I have a

child who I love with my whole heart and he can never and will never

be able to see,smile,cry or do anything again. That is until he

reaches heaven. The pain of not knowing what he is feeling sometimes

is overwhelming. It has been a year of living each day for what it

brings and somewhat waiting for the enevitable. Odd that I don't

ever say that we are waiting for our child to die. Oh God does that

hurt. I know one of you once told me our children are not dying they

are living. Yes I feel that way but each of our children are

differant and mine is suffering. I would rather cut off my arm then

watch my Eli suffer so.

I sometimes wish Elijah was just delayed or behind but the truth is

that he is dying and his brain is already gone. I know parts of him

remain. He seems to know voices and is comforted by touch. It just

hurts so.

I find it interesting that the most wonderful thing in the christian

faith brings so much saddness. I guess it is the face that we have

all put on the christmas.

Please, I hope you all don't get me wrong I LOVE MY SON

unconditionaly. It is true that I am sad about what he will never be

able to do but I would rather have him in my arms than anywhere

else. God has blessed me so.

God bless you for loving your child

Mother to my Elijah 21months old, Leigh's Disease

>

> My son is 5 1/2 now so you would think I'd handle the holidays

> better. But every year around this time I seem to get depressed.

My

> is severely delayed and I guess buying Xmas presents reminds

me

> that he hasn't really improved in 5 years. In fact each year he

> seems to develop more issues. He was born in September so that

first

> Xmas we were blissfully unaware of any problems. I also have an

> older son who may be autistic and/or bipolar(mito related?) He is

> becoming more of a behavioral problem lately.

> I normally am very grateful that my is in better health than

> some. I can't even imagine those who have lost their angels and

what

> they go through. But I am usually very aware of how fortunate we

> are. But this time of year is just really difficult for me. My

> husband is having a hard time being patient with me. He's such a

> wonderful husband & father and very calm and rational. But when

my

> mood is a little dark it seems to affect him as well.

> Don't get me wrong; I'm not lying in bed all day. I get up each

> morning and do my routine, I cooked Thanksgiving dinner & I helped

> decorate for Xmas already. But inside I'm just so sad. I call it

> being functionally depressed-LOL

> I've told my husband that my heart just aches for both my sons.

Any

> parent wants the best for their kids and it kills me that they

have

> so many issues. I mourn a little for the " normal " kids that they

> should have been. I also carry the guilt that their issues are my

> fault. I didn't do anything wrong but since I carried them I feel

> that I'm to blame. I don't say that so someone can absolve my

> guilt. I tell my husband that I will always feel a little

> responsible no matter what the docs say.

> I'm sorry if I made anyone else sad. I'm sure you all have bad

> days/weeks. I guess it helps to get it out. Thanks for

listening:)

> Blessings,

>

[Guest guest]

Oh Boy what a loaded question !!!! Sorry But most of this is me

venting.......

God blessed me with my Elijah 2-15-03 and in August(5months old) he

was diagnosed with Leigh's disease. Most of you know that children

with this illness have extreme brain damage and usally die within

2years. At the time he was diagnosed my Eli was in very poor

condition and we thought it was going to happen very quick. We

prepared for him to have all of his firsts and only's. We accepted

the holidays as a full blessing of life. This year the feeling is so

much differant. As we have spent the last year watching Eli Grow and

look healthier then he did once his disease is still killing him

piece by piece. He is now unresponsive and the only thing that

pleases him is to be held. Even that is becoming hard as he is now

42lbs. Last year he could still swing his arms in hopes to hit his

toy. Now there are no toys. Last year we bought him crib toys and it

was so much fun, hard but fun. I cry now as I think of the hurt on

my husbands face as we stay out of the stores this year unable to

find anything for his abilities. We are very tired, stress out and

sad. The holidays bring everything to the surface. I can talk to

people until I am blue and it wont take away the hurt. I have a

child who I love with my whole heart and he can never and will never

be able to see,smile,cry or do anything again. That is until he

reaches heaven. The pain of not knowing what he is feeling sometimes

is overwhelming. It has been a year of living each day for what it

brings and somewhat waiting for the enevitable. Odd that I don't

ever say that we are waiting for our child to die. Oh God does that

hurt. I know one of you once told me our children are not dying they

are living. Yes I feel that way but each of our children are

differant and mine is suffering. I would rather cut off my arm then

watch my Eli suffer so.

I sometimes wish Elijah was just delayed or behind but the truth is

that he is dying and his brain is already gone. I know parts of him

remain. He seems to know voices and is comforted by touch. It just

hurts so.

I find it interesting that the most wonderful thing in the christian

faith brings so much saddness. I guess it is the face that we have

all put on the christmas.

Please, I hope you all don't get me wrong I LOVE MY SON

unconditionaly. It is true that I am sad about what he will never be

able to do but I would rather have him in my arms than anywhere

else. God has blessed me so.

God bless you for loving your child

Mother to my Elijah 21months old, Leigh's Disease

>

> My son is 5 1/2 now so you would think I'd handle the holidays

> better. But every year around this time I seem to get depressed.

My

> is severely delayed and I guess buying Xmas presents reminds

me

> that he hasn't really improved in 5 years. In fact each year he

> seems to develop more issues. He was born in September so that

first

> Xmas we were blissfully unaware of any problems. I also have an

> older son who may be autistic and/or bipolar(mito related?) He is

> becoming more of a behavioral problem lately.

> I normally am very grateful that my is in better health than

> some. I can't even imagine those who have lost their angels and

what

> they go through. But I am usually very aware of how fortunate we

> are. But this time of year is just really difficult for me. My

> husband is having a hard time being patient with me. He's such a

> wonderful husband & father and very calm and rational. But when

my

> mood is a little dark it seems to affect him as well.

> Don't get me wrong; I'm not lying in bed all day. I get up each

> morning and do my routine, I cooked Thanksgiving dinner & I helped

> decorate for Xmas already. But inside I'm just so sad. I call it

> being functionally depressed-LOL

> I've told my husband that my heart just aches for both my sons.

Any

> parent wants the best for their kids and it kills me that they

have

> so many issues. I mourn a little for the " normal " kids that they

> should have been. I also carry the guilt that their issues are my

> fault. I didn't do anything wrong but since I carried them I feel

> that I'm to blame. I don't say that so someone can absolve my

> guilt. I tell my husband that I will always feel a little

> responsible no matter what the docs say.

> I'm sorry if I made anyone else sad. I'm sure you all have bad

> days/weeks. I guess it helps to get it out. Thanks for

listening:)

> Blessings,

>

[Guest guest]

,

What a good memory you have! Yes Audrey was to get her MAW to Disneyworld in November, and yes, there was a problem because Amie's son Alec, from her first marriage, was possibly not going to be able to go because his Dad didn't want him to miss school, he is in the first grade. Well, sometimes things have a way of being taken out of our hands. Anyway, In September Audrey had pneumonia three times and she was so weak and Amie and Doyle decided she was way to weak to even consider a trip out of state so they decided on a large screen TV and some videos for Audrey's MAW. She loves the 52 inch big screen and I know she will enjoy the TV much more than she would have going to Disney. She really gets tired so easy now. However, she always has enough energy to give grandma that smile that I so need to see!

I really have to go as I just home from a long 12 hours at work and the bed looks pretty inviting right now.

God be with you all,

Kathy, grandma to Audrey, 3 years Sorensen wrote:

Say Kathy:Wasn't Amie and Doyle going with Audrey and the gang on a Make A Wish trip this past November. I thought there was a problem with the one boy being able to have time off (which still amazed me) and was wondering if they ever went. So glad you guys got to be together. So glad for Audrey's blessed smile and what it can bring to others. Nerenhausenmom to Leahkathy boone wrote:> ,> > The holidays have always been hard for me as we have always lived away > from our families and I would be jealous of my brother and all the > talk about getting together with our Mom and Dad and all the great > times they were having. Then something happened and I realized I had > a wonderful family right with me in my children. As they grew and > married our family begin to grow and we

established our own > traditions. The grandchildren have made the holidays so much better!> > I was doing really well this year then I went Christmas shopping. I > did great until I tried to shop for Audrey. It is so hard knowing > what to get her. I just parked my cart and went to Amie's so I could > get my Grandma fix for the day from my special little girl, Audrey. > When I see her I realize there is more to the holidays than food, fun > and presents. > > A few years ago my family, my son and daughter and their spouses, and > my husband and I were not on good terms. Somethings had happened that > I won't go into, in fact they aren't even important anymore. Then > something, or I should say someone happened into our lives. That > someone would be Audrey. I truely believe Audrey was sent to us to > heal our family. This past Sunday I had both of my children and their >

families together at my house for Thanksgiving. It was one of the > happiest days of my life. As I sat holding Audrey and my other > grandchildren were all running around, I saw Audrey smile and I know > she knows what she has done. She, with the help of God, fixed things > in my family. Now we truly are a family again.> > I think I have gotten a little off the subject, but I just want to say > Thanks to my beautiful little Audrey for making things right again. I > love her more than she will ever know.> > Happy Holidays to my Mito Family,> Kathy, grandma to Audrey, 3 years>> nu12002 wrote:>>> My son is 5 1/2 now so you would think I'd handle the holidays> better. But every year around this time I seem to get depressed. My> is severely delayed and I guess buying Xmas presents reminds me> that he hasn't really improved in 5

years. In fact each year he> seems to develop more issues. He was born in September so that first> Xmas we were blissfully unaware of any problems. I also have an> older son who may be autistic and/or bipolar(mito related?) He is> becoming more of a behavioral problem lately.> I normally am very grateful that my is in better health than> some. I can't even imagine those who have lost their angels and what> they go through. But I am usually very aware of how fortunate we> are. But this time of year is just really difficult for me. My> husband is having a hard time being patient with me. He's such a> wonderful husband & father and very calm and rational. But when my> mood is a little dark it seems to affect him as well.> Don't get me wrong; I'm not lying in bed all day. I get up each> morning and do my routine, I cooked Thanksgiving dinner & I helped> decorate for Xmas

already. But inside I'm just so sad. I call it> being functionally depressed-LOL> I've told my husband that my heart just aches for both my sons. Any> parent wants the best for their kids and it kills me that they have> so many issues. I mourn a little for the "normal" kids that they> should have been. I also carry the guilt that their issues are my> fault. I didn't do anything wrong but since I carried them I feel> that I'm to blame. I don't say that so someone can absolve my> guilt. I tell my husband that I will always feel a little> responsible no matter what the docs say.> I'm sorry if I made anyone else sad. I'm sure you all have bad> days/weeks. I guess it helps to get it out. Thanks for listening:)> Blessings,> >>>>>>> Please contact mito-owner with any problems or>

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

[Guest guest]

,

What a good memory you have! Yes Audrey was to get her MAW to Disneyworld in November, and yes, there was a problem because Amie's son Alec, from her first marriage, was possibly not going to be able to go because his Dad didn't want him to miss school, he is in the first grade. Well, sometimes things have a way of being taken out of our hands. Anyway, In September Audrey had pneumonia three times and she was so weak and Amie and Doyle decided she was way to weak to even consider a trip out of state so they decided on a large screen TV and some videos for Audrey's MAW. She loves the 52 inch big screen and I know she will enjoy the TV much more than she would have going to Disney. She really gets tired so easy now. However, she always has enough energy to give grandma that smile that I so need to see!

I really have to go as I just home from a long 12 hours at work and the bed looks pretty inviting right now.

God be with you all,

Kathy, grandma to Audrey, 3 years Sorensen wrote:

Say Kathy:Wasn't Amie and Doyle going with Audrey and the gang on a Make A Wish trip this past November. I thought there was a problem with the one boy being able to have time off (which still amazed me) and was wondering if they ever went. So glad you guys got to be together. So glad for Audrey's blessed smile and what it can bring to others. Nerenhausenmom to Leahkathy boone wrote:> ,> > The holidays have always been hard for me as we have always lived away > from our families and I would be jealous of my brother and all the > talk about getting together with our Mom and Dad and all the great > times they were having. Then something happened and I realized I had > a wonderful family right with me in my children. As they grew and > married our family begin to grow and we

established our own > traditions. The grandchildren have made the holidays so much better!> > I was doing really well this year then I went Christmas shopping. I > did great until I tried to shop for Audrey. It is so hard knowing > what to get her. I just parked my cart and went to Amie's so I could > get my Grandma fix for the day from my special little girl, Audrey. > When I see her I realize there is more to the holidays than food, fun > and presents. > > A few years ago my family, my son and daughter and their spouses, and > my husband and I were not on good terms. Somethings had happened that > I won't go into, in fact they aren't even important anymore. Then > something, or I should say someone happened into our lives. That > someone would be Audrey. I truely believe Audrey was sent to us to > heal our family. This past Sunday I had both of my children and their >

families together at my house for Thanksgiving. It was one of the > happiest days of my life. As I sat holding Audrey and my other > grandchildren were all running around, I saw Audrey smile and I know > she knows what she has done. She, with the help of God, fixed things > in my family. Now we truly are a family again.> > I think I have gotten a little off the subject, but I just want to say > Thanks to my beautiful little Audrey for making things right again. I > love her more than she will ever know.> > Happy Holidays to my Mito Family,> Kathy, grandma to Audrey, 3 years>> nu12002 wrote:>>> My son is 5 1/2 now so you would think I'd handle the holidays> better. But every year around this time I seem to get depressed. My> is severely delayed and I guess buying Xmas presents reminds me> that he hasn't really improved in 5

years. In fact each year he> seems to develop more issues. He was born in September so that first> Xmas we were blissfully unaware of any problems. I also have an> older son who may be autistic and/or bipolar(mito related?) He is> becoming more of a behavioral problem lately.> I normally am very grateful that my is in better health than> some. I can't even imagine those who have lost their angels and what> they go through. But I am usually very aware of how fortunate we> are. But this time of year is just really difficult for me. My> husband is having a hard time being patient with me. He's such a> wonderful husband & father and very calm and rational. But when my> mood is a little dark it seems to affect him as well.> Don't get me wrong; I'm not lying in bed all day. I get up each> morning and do my routine, I cooked Thanksgiving dinner & I helped> decorate for Xmas

already. But inside I'm just so sad. I call it> being functionally depressed-LOL> I've told my husband that my heart just aches for both my sons. Any> parent wants the best for their kids and it kills me that they have> so many issues. I mourn a little for the "normal" kids that they> should have been. I also carry the guilt that their issues are my> fault. I didn't do anything wrong but since I carried them I feel> that I'm to blame. I don't say that so someone can absolve my> guilt. I tell my husband that I will always feel a little> responsible no matter what the docs say.> I'm sorry if I made anyone else sad. I'm sure you all have bad> days/weeks. I guess it helps to get it out. Thanks for listening:)> Blessings,> >>>>>>> Please contact mito-owner with any problems or>

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

[Guest guest]

My belief is that venting is GOOD. Holding it inside is BAD and

what are we here for anyway if not to support each other when these

kinds of feelings come.

The truth is, I don't think you would be normal if your feelings did

not run the full gammut. I am sure that the poster who said

that " our children are living, not dying " meant well, but while that

sentiment is easy to say, it is not so easy when reality is staring

you in the face. There are lots of parents out there who have

gotten a really crappy deal. I see the posts of such horrible

suffering of children and their parents and sometimes it is hard for

ME to hold it together and my situation is no where near what some

are. I know that I am rambling, but I just can't find the right

words to say that it's alright to recognize that things are not

always rosey AND to say it out loud.

I do have to tell you though, that I have passed Elijah's name along

to family and friends who will pray for him. Through looking at

your site and reading Elijah's guestbook, I came across some other

children for whom I did the same. Reading the stories that your

page led me to (including your own) I have seen true courage,

bravery, and selfless love.

I do not profess to know the master plan, heck I have not even

figured out my own plan But, if nothing else, Elijah has known

your deep, selfless love. He knows the joy of being held by you,

loved by you. He could not have gotten better care, of that I am

certain.

Anytime you want to vent, or not, feel free to email me. . .

Beth

Mom to (diagnosed as having complex III and IV defects, stroke

at birth)

> >

> > My son is 5 1/2 now so you would think I'd handle the holidays

> > better. But every year around this time I seem to get

depressed.

> My

> > is severely delayed and I guess buying Xmas presents

reminds

> me

> > that he hasn't really improved in 5 years. In fact each year he

> > seems to develop more issues. He was born in September so that

> first

> > Xmas we were blissfully unaware of any problems. I also have an

> > older son who may be autistic and/or bipolar(mito related?) He

is

> > becoming more of a behavioral problem lately.

> > I normally am very grateful that my is in better health

than

> > some. I can't even imagine those who have lost their angels and

> what

> > they go through. But I am usually very aware of how fortunate

we

> > are. But this time of year is just really difficult for me. My

> > husband is having a hard time being patient with me. He's such

a

> > wonderful husband & father and very calm and rational. But when

> my

> > mood is a little dark it seems to affect him as well.

> > Don't get me wrong; I'm not lying in bed all day. I get up each

> > morning and do my routine, I cooked Thanksgiving dinner & I

helped

> > decorate for Xmas already. But inside I'm just so sad. I call

it

> > being functionally depressed-LOL

> > I've told my husband that my heart just aches for both my sons.

> Any

> > parent wants the best for their kids and it kills me that they

> have

> > so many issues. I mourn a little for the " normal " kids that

they

> > should have been. I also carry the guilt that their issues are

my

> > fault. I didn't do anything wrong but since I carried them I

feel

> > that I'm to blame. I don't say that so someone can absolve my

> > guilt. I tell my husband that I will always feel a little

> > responsible no matter what the docs say.

> > I'm sorry if I made anyone else sad. I'm sure you all have bad

> > days/weeks. I guess it helps to get it out. Thanks for

> listening:)

> > Blessings,

> >

[Guest guest]

My belief is that venting is GOOD. Holding it inside is BAD and

what are we here for anyway if not to support each other when these

kinds of feelings come.

The truth is, I don't think you would be normal if your feelings did

not run the full gammut. I am sure that the poster who said

that " our children are living, not dying " meant well, but while that

sentiment is easy to say, it is not so easy when reality is staring

you in the face. There are lots of parents out there who have

gotten a really crappy deal. I see the posts of such horrible

suffering of children and their parents and sometimes it is hard for

ME to hold it together and my situation is no where near what some

are. I know that I am rambling, but I just can't find the right

words to say that it's alright to recognize that things are not

always rosey AND to say it out loud.

I do have to tell you though, that I have passed Elijah's name along

to family and friends who will pray for him. Through looking at

your site and reading Elijah's guestbook, I came across some other

children for whom I did the same. Reading the stories that your

page led me to (including your own) I have seen true courage,

bravery, and selfless love.

I do not profess to know the master plan, heck I have not even

figured out my own plan But, if nothing else, Elijah has known

your deep, selfless love. He knows the joy of being held by you,

loved by you. He could not have gotten better care, of that I am

certain.

Anytime you want to vent, or not, feel free to email me. . .

Beth

Mom to (diagnosed as having complex III and IV defects, stroke

at birth)

> >

> > My son is 5 1/2 now so you would think I'd handle the holidays

> > better. But every year around this time I seem to get

depressed.

> My

> > is severely delayed and I guess buying Xmas presents

reminds

> me

> > that he hasn't really improved in 5 years. In fact each year he

> > seems to develop more issues. He was born in September so that

> first

> > Xmas we were blissfully unaware of any problems. I also have an

> > older son who may be autistic and/or bipolar(mito related?) He

is

> > becoming more of a behavioral problem lately.

> > I normally am very grateful that my is in better health

than

> > some. I can't even imagine those who have lost their angels and

> what

> > they go through. But I am usually very aware of how fortunate

we

> > are. But this time of year is just really difficult for me. My

> > husband is having a hard time being patient with me. He's such

a

> > wonderful husband & father and very calm and rational. But when

> my

> > mood is a little dark it seems to affect him as well.

> > Don't get me wrong; I'm not lying in bed all day. I get up each

> > morning and do my routine, I cooked Thanksgiving dinner & I

helped

> > decorate for Xmas already. But inside I'm just so sad. I call

it

> > being functionally depressed-LOL

> > I've told my husband that my heart just aches for both my sons.

> Any

> > parent wants the best for their kids and it kills me that they

> have

> > so many issues. I mourn a little for the " normal " kids that

they

> > should have been. I also carry the guilt that their issues are

my

> > fault. I didn't do anything wrong but since I carried them I

feel

> > that I'm to blame. I don't say that so someone can absolve my

> > guilt. I tell my husband that I will always feel a little

> > responsible no matter what the docs say.

> > I'm sorry if I made anyone else sad. I'm sure you all have bad

> > days/weeks. I guess it helps to get it out. Thanks for

> listening:)

> > Blessings,

> >