Perspective

January 26, 2000

In a message dated 01/26/2000 10:18:12 AM Eastern Standard Time,

vivianrisse@... writes:

<< Went to my friend's funeral yesterday with my older daughter. Looked

around, thought. I shared my thoughts with my daughter, and she agreed.

Here goes: A couple of pounds up and down in a week is no biggie in the

Big Scheme. I was definitely smaller than many people there.... After

almost 10 months of Tae-Bo with no loss of weight or inches (15 lbs.

gain!), I am healthier than I've ever been (my daughter's observation),

and I feel great! So, Tae-Bo On, and when it happens, it happens....

And Barb, I am so happy for your plateau-busting. >>

thanks Vivian and remember even if your scale don't see it,

your mind and body does

Barb

who knows I may plateau again but also knows I'll keep on kicking

AKA: POMBarb, Mad-Dame Yenta, Tae-Bo Barb

" It's hard to be a cheerleader when the kid won't be a player "

<A HREF= " http://hometown.aol.com/horsemom2/myhomepage/index.html " >Barb's

Places on the web</A>

August 4, 2009

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

August 4, 2009

I try to think that way often as well, but it can be hard at times. But we have to put things in perspesctive and also realize that everyone is fighting their own personal battles. But it just seems more heartbreaking when it's our babies? Don't you think? My husband always says, "Please give me the scoliosis and take it away from Hayden"... Wish it were that easy.

Joan

To: infantile_scoliosis Sent: Tuesday, August 4, 2009 4:26:18 PMSubject: Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands.. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

August 4, 2009

I know what you mean.....I often feel so sorry for myself and . And then I want someone to slap me across the face and say, WAKE UP! There are so many other children and families(parents-just like you met at the park)that are dealing with so much more. I am so thankful for all that has had to deal with.....I know that may sound strange, but I am. It has made our family realize his condition is nothing compared to what others endure. And I am at peace knowing he may be in a brace for the rest of his growing years. And I will make sure he feels that way too.......when he is old enough to understand. Its not easy and there are nights it is SOOOOOO hard.....especially when he does not want to wear that dang brace, but I try to remind myself often.Thanks for sharing Heidi.TashaMommy of 4 year old

twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.html--- Subject: PerspectiveTo: infantile_scoliosis Date: Tuesday, August 4, 2009, 4:26 PM

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

August 4, 2009

You know what, yes, this young woman wrote an email to me that night saying that she often says she can handle having this herself, but not if her child had it. It's a very helpless feeling when something is happening to your child's health. Trying to do something to spread the word to help others helps us feel a little more empowered about it, but I hear you. Nick said the same thing, "Give it to me."Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

Subject: Re: PerspectiveTo: infantile_scoliosis Date: Tuesday, August 4, 2009, 2:37 PM

I try to think that way often as well, but it can be hard at times. But we have to put things in perspesctive and also realize that everyone is fighting their own personal battles. But it just seems more heartbreaking when it's our babies? Don't you think? My husband always says, "Please give me the scoliosis and take it away from Hayden"... Wish it were that easy.

Joan

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 4:26:18 PMSubject: [infantile_scoliosi s] Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands.. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

August 5, 2009

One of the nurse at Shriners said to me about Bexon "No pity!", I think meaning just treat him like a normal kid. I use that one on myself sometimes, NO PITY! Not that I don't ever feel it...I do have 2 other families I know, dear friends, who have far worse situations than ours, with their kids- unrelated to scoli. I think the same thing about them that others ay to us- I can't imagine what you're going through.

Then I feel so sad for them and scared that bad things happen to good people, you know? So sometimes it gives me the opposite reaction from good perspective.

I try to remind myself I can't take on or fix everyone's problems, and I do have to focus on my own family or I'll REALLY go over the side of the boat. It's a balance, because some days I can be just full of gratitude, so happy at moments I could fly right out of my shoes, and other times I'm so scared of the future- the unknown about my child and just everything, you know? God or someone must think that we could handle this, so I have to believe we can handle whatever comes our way.Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 4:26 PM

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

August 5, 2009

Jane,

I didn't share this, but my cousin had to deliver her 5 month old healthy baby just a week ago, to only hold her for only 2 hours before she died. My cousin had an infection that would have killed her- the mother- had she tried to complete the pregnancy, and she has another child to raise. The infection did not allow for a C-section, so they had to induce labor. So horrible. I'm so deeply sorry for your friends, I just can't imagine their pain, and these are many of the reasons I'm afraid to try for a second baby!

My husband's oldest friend had their second baby who was severely oxygen deprived at the very end of the pregnancy, the umbilical cord was wrapped around her neck- she may never be able to live without full assistance. Now I do not feel like these things couldn't happen to me! It is all so close to home. I understand your feelings, we would not have wished these things to happen to our kids, and we certainly do not want anyone else to go through so much pain. It's not fair. My therapist tells me I ingest other people's stories and feel them too intensely. She tells me I have to self protect.

I can only take it one day at a time and count my blessings for all of the luck that we've had, to find casting and for it to even be available in the U.S. because of and Olivia. I'm so grateful Bexon wasn't born ten years ago with this, but it makes me mad that Olivia didn't have it available to her! And of course all of the other babies/kids. All I can do is my best, to try to change what I can for the future kids. We all can do that, by doing exactly this, sharing our stories. I'm so glad we have the chance to, it's a gift.

Warmly,Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

Subject: Re: PerspectiveTo: infantile_scoliosis Date: Tuesday, August 4, 2009, 3:47 PM

Heidi, thank you for sharing. It is good to have things brought into perspective.

In the last 3 months I have had 2 very close friends deliver full-term stillborn babies. Proving to me that life is NOT fair. And unfortunately this has done nothing for the most part to help me keep Grace's problems in perspective, but in other ways it has. From 20 weeks gestation on, it was a constant worry that Grace's omphalocele would cause us to lose her because there is so much unknown about the condition before they are born, other than the approximate size of it. Then she was born with no eating issues, bowel issues, heart, kidney, etc. All the typical problems "O" babies can have, she didn't. It has made me question why we were the lucky ones to have her be so amazing and only have a 9 day stay in the NICU when other babies with the same condition spend at least 3-4 months, if not their entire first year of life in the hospital.

The losses of my friends has made more fear creep in that "all good things must come to an end" and that our luck is running out and that one of these times she has a procedure, she isn't going to be the lucky one anymore. I have heard from friends, family and church family SO many times that she is the "miracle" baby. I cringe at that. People whisper it. It drives me nuts. I want people to recognize that yes, she is strong, she is amazing, she has endured, but it was with prayer AND the current medical technologies that have allowed her "issues" to be resolved fairly simply. But so have so many other kids who have had it so much worse. She isn't the miracle. Knowledge is the miracle.

While at the memorial service this last weekend for one of the babies, the ones that knew of Grace's upcoming surgery were consoling me. They should have been consoling the family who had lost.

Sorry for my ramble. You just got me thinking...dangerou s thing sometimes, lol.

Jane

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 2:26:18 PMSubject: [infantile_scoliosi s] Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

August 5, 2009

Heidi,I try to count my blessings too but I was so bitter for so long after losing my first son 10 years ago and it just made it worse when Isabella was diagnosed with PIS. I know I can't be like that though when so many kids are so worse off than Izzy. My own nephew has a disease which is extremely rare and he's 10 and can't walk or talk but he's one of the happiest kids in the world and his smile just lights me up! Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)To: infantile_scoliosis Sent: Tuesday, August 4, 2009 5:26:18 PMSubject: Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

August 5, 2009

HeidiCan't help but share....your comment about your therapist's observation of you....my husband says the same thing about me! He hates going to doctors appointments with me! I am mess for hours after our trips to the Children's Hospital..I can't help it. When I first found all the info and testimonials on PIS he would join me in a quest for info but I was projecting other parents "issues" on our lif. It's so hard not to..my heart goes out to ALL of you! I pray for you and your children every night!To: infantile_scoliosis Sent: Tuesday, August 4, 2009 7:50:28 PMSubject: Re: Perspective

Jane,

I didn't share this, but my cousin had to deliver her 5 month old healthy baby just a week ago, to only hold her for only 2 hours before she died. My cousin had an infection that would have killed her- the mother- had she tried to complete the pregnancy, and she has another child to raise. The infection did not allow for a C-section, so they had to induce labor. So horrible. I'm so deeply sorry for your friends, I just can't imagine their pain, and these are many of the reasons I'm afraid to try for a second baby!

My husband's oldest friend had their second baby who was severely oxygen deprived at the very end of the pregnancy, the umbilical cord was wrapped around her neck- she may never be able to live without full assistance. Now I do not feel like these things couldn't happen to me! It is all so close to home. I understand your feelings, we would not have wished these things to happen to our kids, and we certainly do not want anyone else to go through so much pain. It's not fair. My therapist tells me I ingest other people's stories and feel them too intensely. She tells me I have to self protect.

I can only take it one day at a time and count my blessings for all of the luck that we've had, to find casting and for it to even be available in the U.S. because of and Olivia. I'm so grateful Bexon wasn't born ten years ago with this, but it makes me mad that Olivia didn't have it available to her! And of course all of the other babies/kids. All I can do is my best, to try to change what I can for the future kids. We all can do that, by doing exactly this, sharing our stories. I'm so glad we have the chance to, it's a gift.

Warmly,Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: Jane Bigler <janemharyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 3:47 PM

Heidi, thank you for sharing. It is good to have things brought into perspective.

In the last 3 months I have had 2 very close friends deliver full-term stillborn babies. Proving to me that life is NOT fair. And unfortunately this has done nothing for the most part to help me keep Grace's problems in perspective, but in other ways it has. From 20 weeks gestation on, it was a constant worry that Grace's omphalocele would cause us to lose her because there is so much unknown about the condition before they are born, other than the approximate size of it. Then she was born with no eating issues, bowel issues, heart, kidney, etc. All the typical problems "O" babies can have, she didn't. It has made me question why we were the lucky ones to have her be so amazing and only have a 9 day stay in the NICU when other babies with the same condition spend at least 3-4 months, if not their entire first year of life in the hospital.

The losses of my friends has made more fear creep in that "all good things must come to an end" and that our luck is running out and that one of these times she has a procedure, she isn't going to be the lucky one anymore. I have heard from friends, family and church family SO many times that she is the "miracle" baby. I cringe at that. People whisper it. It drives me nuts. I want people to recognize that yes, she is strong, she is amazing, she has endured, but it was with prayer AND the current medical technologies that have allowed her "issues" to be resolved fairly simply. But so have so many other kids who have had it so much worse. She isn't the miracle. Knowledge is the miracle.

While at the memorial service this last weekend for one of the babies, the ones that knew of Grace's upcoming surgery were consoling me. They should have been consoling the family who had lost.

Sorry for my ramble. You just got me thinking...dangerou s thing sometimes, lol.

Jane

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 2:26:18 PMSubject: [infantile_scoliosi s] Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

August 5, 2009

Ditto on that Heidi. I too, have been getting loads of perspective lately. A

friend of a friend lost her child in an accident, and then her husband, while

she was pregnant. Sometimes it seems that this is all encompassing and so dark.

However, there is someone who has greater pain, always. It is so important to

remember that, it is so easy to get wrapped up in what is going on with our

children and forget that there are people around us that are going through

exponentially more difficult things. I always try to look at what is so RIGHT

with Wyatt, and my life when I start to feel sorry for him and myself. I know

that it isn't going to do him any good for his mom to feel that way, or anyone

else for that matter. He has no idea what is going on, and is happy as can be!

I think it is so important to be gratefule b/c gratitude is the one emotion that

can make things happen in our lives. This is our journey, and I thank God

everyday for it. Thanks for posting that, it is so nice to be reminded.

>

> So, I had to share this.

>

> I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a

friend with her husband and son, who's about Bexon's age. I think I got that

stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely

moment of throwing up while Bex was in the room playing, he had no idea I was

sick)...It is never a good thought that you could get that smell on a cast!!!

>

> Ok, back to the park, this nice young woman and I chat about Bexon's

scoliosis, and she mentions that she was just involved in a fundraiser for HIBM,

a rare condition which she has. It slowly deteriorates all of your muscles,

mostly striking young adults in the prime of life, and within 10-15 years of

diagnosis they are usually in a wheelchair and can't use their hands. It is not

fatal. Ans she and her husband are currently looking for a surrogate to have a

second child! (The condition worsens in pregnancy.) What incredible optimism!!!

>

> I haven't been able to stop thinking about her and the fact that yes, my child

has a serious condition, but I have to count my blessings every single moment.

>

> Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners,

currently down from 61 degrees to 25)

>

August 5, 2009

Thank you . Don't take the whole world on your shoulder. Your baby needs you, and we do too..

Joan

To: infantile_scoliosis Sent: Tuesday, August 4, 2009 11:48:43 PMSubject: Re: Perspective

HeidiCan't help but share....your comment about your therapist's observation of you....my husband says the same thing about me! He hates going to doctors appointments with me! I am mess for hours after our trips to the Children's Hospital..I can't help it. When I first found all the info and testimonials on PIS he would join me in a quest for info but I was projecting other parents "issues" on our lif. It's so hard not to..my heart goes out to ALL of you! I pray for you and your children every night!

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 7:50:28 PMSubject: Re: [infantile_scoliosi s] Perspective

Jane,

I didn't share this, but my cousin had to deliver her 5 month old healthy baby just a week ago, to only hold her for only 2 hours before she died. My cousin had an infection that would have killed her- the mother- had she tried to complete the pregnancy, and she has another child to raise. The infection did not allow for a C-section, so they had to induce labor. So horrible. I'm so deeply sorry for your friends, I just can't imagine their pain, and these are many of the reasons I'm afraid to try for a second baby!

My husband's oldest friend had their second baby who was severely oxygen deprived at the very end of the pregnancy, the umbilical cord was wrapped around her neck- she may never be able to live without full assistance. Now I do not feel like these things couldn't happen to me! It is all so close to home. I understand your feelings, we would not have wished these things to happen to our kids, and we certainly do not want anyone else to go through so much pain. It's not fair. My therapist tells me I ingest other people's stories and feel them too intensely. She tells me I have to self protect.

I can only take it one day at a time and count my blessings for all of the luck that we've had, to find casting and for it to even be available in the U.S. because of and Olivia. I'm so grateful Bexon wasn't born ten years ago with this, but it makes me mad that Olivia didn't have it available to her! And of course all of the other babies/kids. All I can do is my best, to try to change what I can for the future kids. We all can do that, by doing exactly this, sharing our stories. I'm so glad we have the chance to, it's a gift.

Warmly,Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: Jane Bigler <janemharyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 3:47 PM

Heidi, thank you for sharing. It is good to have things brought into perspective.

In the last 3 months I have had 2 very close friends deliver full-term stillborn babies. Proving to me that life is NOT fair. And unfortunately this has done nothing for the most part to help me keep Grace's problems in perspective, but in other ways it has. From 20 weeks gestation on, it was a constant worry that Grace's omphalocele would cause us to lose her because there is so much unknown about the condition before they are born, other than the approximate size of it. Then she was born with no eating issues, bowel issues, heart, kidney, etc. All the typical problems "O" babies can have, she didn't. It has made me question why we were the lucky ones to have her be so amazing and only have a 9 day stay in the NICU when other babies with the same condition spend at least 3-4 months, if not their entire first year of life in the hospital.

The losses of my friends has made more fear creep in that "all good things must come to an end" and that our luck is running out and that one of these times she has a procedure, she isn't going to be the lucky one anymore. I have heard from friends, family and church family SO many times that she is the "miracle" baby. I cringe at that. People whisper it. It drives me nuts. I want people to recognize that yes, she is strong, she is amazing, she has endured, but it was with prayer AND the current medical technologies that have allowed her "issues" to be resolved fairly simply. But so have so many other kids who have had it so much worse. She isn't the miracle.. Knowledge is the miracle.

While at the memorial service this last weekend for one of the babies, the ones that knew of Grace's upcoming surgery were consoling me. They should have been consoling the family who had lost.

Sorry for my ramble. You just got me thinking...dangerou s thing sometimes, lol.

Jane

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 2:26:18 PMSubject: [infantile_scoliosi s] Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment.. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

August 5, 2009

This quote seems to help me, so I thought I'd share.

God doesn't give us what we can handle; god helps us handle what we are given.~Noah 4 years old9 months of casting in SLC; Currently on month 18 of bracingAnd Mariella 6 months old currently waiting and watching at 11*

To: infantile_scoliosis From: nickguthe@...Date: Tue, 4 Aug 2009 15:00:19 -0700Subject: Re: Perspective

One of the nurse at Shriners said to me about Bexon "No pity!", I think meaning just treat him like a normal kid. I use that one on myself sometimes, NO PITY! Not that I don't ever feel it...I do have 2 other families I know, dear friends, who have far worse situations than ours, with their kids- unrelated to scoli. I think the same thing about them that others ay to us- I can't imagine what you're going through.

Then I feel so sad for them and scared that bad things happen to good people, you know? So sometimes it gives me the opposite reaction from good perspective.

I try to remind myself I can't take on or fix everyone's problems, and I do have to focus on my own family or I'll REALLY go over the side of the boat. It's a balance, because some days I can be just full of gratitude, so happy at moments I could fly right out of my shoes, and other times I'm so scared of the future- the unknown about my child and just everything, you know? God or someone must think that we could handle this, so I have to believe we can handle whatever comes our way.Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 4:26 PM

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

Get back to school stuff for them and cashback for you. Try BingT now.

August 5, 2009

AMEN sister! I am a firm believer in God and this I find to be very true.TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.html--- Subject: RE: PerspectiveTo: infantile_scoliosis Date: Wednesday, August 5, 2009, 9:03 AM

This quote seems to help me, so I thought I'd share.

God doesn't give us what we can handle; god helps us handle what we are given.~Noah 4 years old9 months of casting in SLC; Currently on month 18 of bracingAnd Mariella 6 months old currently waiting and watching at 11*

To: infantile_scoliosis @yahoogroups. comFrom: nickgutheyahoo (DOT) comDate: Tue, 4 Aug 2009 15:00:19 -0700Subject: Re: [infantile_scoliosi s] Perspective

One of the nurse at Shriners said to me about Bexon "No pity!", I think meaning just treat him like a normal kid. I use that one on myself sometimes, NO PITY! Not that I don't ever feel it...I do have 2 other families I know, dear friends, who have far worse situations than ours, with their kids- unrelated to scoli. I think the same thing about them that others ay to us- I can't imagine what you're going through.

Then I feel so sad for them and scared that bad things happen to good people, you know? So sometimes it gives me the opposite reaction from good perspective.

I try to remind myself I can't take on or fix everyone's problems, and I do have to focus on my own family or I'll REALLY go over the side of the boat. It's a balance, because some days I can be just full of gratitude, so happy at moments I could fly right out of my shoes, and other times I'm so scared of the future- the unknown about my child and just everything, you know? God or someone must think that we could handle this, so I have to believe we can handle whatever comes our way.Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 4:26 PM

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

Get back to school stuff for them and cashback for you. Try BingT now.

August 5, 2009

Patty,

Losing a child has to be the worst thing that can happen to anyone. You are so very strong to be facing health problems with your Izzy now! God or the Universe must really think you are Superwoman. That is my worst fear, of course, to lose Bex. I know of other friend's families where they have a child with major health problems who is very happy and lights up their life. Who are we to say that child is not having a happy/good life experience? I think sometimes healthy people are less happy!Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

Subject: Re: PerspectiveTo: infantile_scoliosis Date: Tuesday, August 4, 2009, 9:06 PM

Heidi,

I try to count my blessings too but I was so bitter for so long after losing my first son 10 years ago and it just made it worse when Isabella was diagnosed with PIS. I know I can't be like that though when so many kids are so worse off than Izzy. My own nephew has a disease which is extremely rare and he's 10 and can't walk or talk but he's one of the happiest kids in the world and his smile just lights me up!

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 5:26:18 PMSubject: [infantile_scoliosi s] Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

August 5, 2009

Hi All

I guess I'm still just struggling to get into a comfortable frame of mind. Some days I think "I can totally deal with this" other days I'm a mess! I guess I'm just worried about his hypotonia (low tone) along with his scoli as well. I can't help but to think "will my baby ever learn to do the things others kids his age can do?" Will he ever walk, crawl etc.? I agree other families have it way worse off than I do, its evident when we go to the children's hospital but I still can't help but to feel sorry for my son. I've had people say "you don't know how lucky you are!" but in all truth I don't feel lucky at all. I know this is 100 percent selfish and I wish I could get past it but I'm really struggling. Maybe its just still too soon, he is still only in his first cast, so perhaps over time I will gather that strength and confidence and stop dwelling in my self pity. I am always very careful

that I don't project my feelings onto my son, I would never want him to know how hard this is on us all so I'm always very positive around him for his sake. I would hate for him to feel my sadness, he doesn't deserve that, he has enough to deal with. Ok I hope I haven't depressed everyone, it just helps sometimes to get things off my chest.

From: Jane Bigler <janemharyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 3:47 PM

Heidi, thank you for sharing. It is good to have things brought into perspective.

In the last 3 months I have had 2 very close friends deliver full-term stillborn babies. Proving to me that life is NOT fair.. And unfortunately this has done nothing for the most part to help me keep Grace's problems in perspective, but in other ways it has. From 20 weeks gestation on, it was a constant worry that Grace's omphalocele would cause us to lose her because there is so much unknown about the condition before they are born, other than the approximate size of it. Then she was born with no eating issues, bowel issues, heart, kidney, etc. All the typical problems "O" babies can have, she didn't. It has made me question why we were the lucky ones to have her be so amazing and only have a 9 day stay in the NICU when other babies with the same condition spend at least 3-4 months, if not their entire first year of life in the hospital.

The losses of my friends has made more fear creep in that "all good things must come to an end" and that our luck is running out and that one of these times she has a procedure, she isn't going to be the lucky one anymore. I have heard from friends, family and church family SO many times that she is the "miracle" baby. I cringe at that. People whisper it. It drives me nuts. I want people to recognize that yes, she is strong, she is amazing, she has endured, but it was with prayer AND the current medical technologies that have allowed her "issues" to be resolved fairly simply. But so have so many other kids who have had it so much worse. She isn't the miracle. Knowledge is the miracle.

While at the memorial service this last weekend for one of the babies, the ones that knew of Grace's upcoming surgery were consoling me. They should have been consoling the family who had lost.

Sorry for my ramble. You just got me thinking...dangerou s thing sometimes, lol.

Jane

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 2:26:18 PMSubject: [infantile_scoliosi s] Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail

August 5, 2009

Hang in there Lynn. I'm going through the exact same thing. Hypotonia and the Scoli. (just found out he needs to be put in halo traction, his curve is 108*!) Have faith. I know it's easier said than done, but one day you will be on the other side of this mountain, your son will be doing great, and you'll think back to these hard days and wonder how you made it through, but you will. -Tema.

From: Jane Bigler <janemharyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] PerspectiveTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, August 4, 2009, 3:47 PM

Heidi, thank you for sharing. It is good to have things brought into perspective.

In the last 3 months I have had 2 very close friends deliver full-term stillborn babies. Proving to me that life is NOT fair.. And unfortunately this has done nothing for the most part to help me keep Grace's problems in perspective, but in other ways it has. From 20 weeks gestation on, it was a constant worry that Grace's omphalocele would cause us to lose her because there is so much unknown about the condition before they are born, other than the approximate size of it. Then she was born with no eating issues, bowel issues, heart, kidney, etc. All the typical problems "O" babies can have, she didn't. It has made me question why we were the lucky ones to have her be so amazing and only have a 9 day stay in the NICU when other babies with the same condition spend at least 3-4 months, if not their entire first year of life in the hospital.

The losses of my friends has made more fear creep in that "all good things must come to an end" and that our luck is running out and that one of these times she has a procedure, she isn't going to be the lucky one anymore. I have heard from friends, family and church family SO many times that she is the "miracle" baby. I cringe at that. People whisper it. It drives me nuts. I want people to recognize that yes, she is strong, she is amazing, she has endured, but it was with prayer AND the current medical technologies that have allowed her "issues" to be resolved fairly simply. But so have so many other kids who have had it so much worse. She isn't the miracle. Knowledge is the miracle.

While at the memorial service this last weekend for one of the babies, the ones that knew of Grace's upcoming surgery were consoling me. They should have been consoling the family who had lost.

Sorry for my ramble. You just got me thinking...dangerou s thing sometimes, lol.

Jane

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, August 4, 2009 2:26:18 PMSubject: [infantile_scoliosi s] Perspective

So, I had to share this.

I'm in the park 2 days ago with Nick and Bex, and we run into a friend of a friend with her husband and son, who's about Bexon's age. I think I got that stomach virus that Nick had after our 3rd casting trip (yesterday I had a lovely moment of throwing up while Bex was in the room playing, he had no idea I was sick)...It is never a good thought that you could get that smell on a cast!!!

Ok, back to the park, this nice young woman and I chat about Bexon's scoliosis, and she mentions that she was just involved in a fundraiser for HIBM, a rare condition which she has. It slowly deteriorates all of your muscles, mostly striking young adults in the prime of life, and within 10-15 years of diagnosis they are usually in a wheelchair and can't use their hands. It is not fatal. Ans she and her husband are currently looking for a surrogate to have a second child! (The condition worsens in pregnancy.) What incredible optimism!!!

I haven't been able to stop thinking about her and the fact that yes, my child has a serious condition, but I have to count my blessings every single moment. Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail

August 5, 2009

Lynn, I have the same problem. Vent away, that's what we're here for. Also, I have had to go on anti-depressants at times when things get so overwhelming. I just went back on Wellbuterin last week because between all the loss of those around me and Grace's upcoming surgery, well, I just couldn't deal anymore. I'm not on a huge dose, just a bit to help me stay on the good side of the hump. My doctor finally noted that she thinks that it is a form of PTSD. For us, as I said, we didn't know if Grace would survive. So, for us, it was a very traumatic stressfull situation. Then, when it all turned out for the good, I didn't know what to do with all those feelings or where to go with it all.

Hope this helps.

Jane

To: infantile_scoliosis Sent: Wednesday, August 5, 2009 10:15:32 AMSubject: Re: Perspective