Really hit me hard

August 21, 2006

Hi everyone-

So this past weekend I was out with some of my old coworkers and one

of them brought their 10 month old daughter along. Their daughter

was supposed to be due two days after my son Ben (12 month old

CHARGEr- 10 months adjusted). She too is a stay at home mom, with

obviously completely different daily tasks than that required of a

special needs child with a trach and a feeding tube.

It was so difficult for me to see her. It just reminded me of the

life I was envisioning (and the lives we both talked about together)

before Ben was born, the life she is living. I know my life is

nothing like what I expected and have come to realize that even

though life isn't what you expect, it can still be wonderful.

That's why I don't understand why I had so much trouble with this

situation? The one thing she said that was the hardest for me to

swallow, was in response to me asking her how it was going. She said

that it is definitely harder than she expected, but when her

daughter smiles at her or reaches for her in the morning... it makes

it all worth while. I had so much trouble with this because Ben

doesn't smile or get excited to see me. He has a lot of cranial

nerve problems and has no facial movement on his right and very

little on his left. He does do this open mouth thing when he is

excited, but I've often questioned if I'm reading too much into it.

I think he seems excited, but maybe I'm wrong. Maybe I just want

that to be it?? I don't know. I just would love for Ben to show me

some sign that he even knows who I am.

We just work so hard, day in, day out on all of Ben's therapies and

I think I'm just at a point where I need a pep talk from the gang. I

compare it to going on a diet. Say for instance you have been

dieting like crazy, following all the rules, going to the gym 3

times a day AND you only lose a few pounds after a year. And your

gym buddy whom you see three times a day doesn't even seem to

recognize you. You tend to get frustrated and start looking for a

way to refuel. You know you need to do it, but you really need a

push in the right direction.

Am I making any sense? I guess I'm just asking for a push in the

right direction from people who know what I'm talking about.

Fondly-

Amy Russo

Mom to Ben Russo (12 month old CHARGEr)

August 21, 2006

>

> Hi everyone-

>

> So this past weekend I was out with some of my old coworkers and

one

> of them brought their 10 month old daughter along. Their daughter

> was supposed to be due two days after my son Ben (12 month old

> CHARGEr- 10 months adjusted). She too is a stay at home mom, with

> obviously completely different daily tasks than that required of a

> special needs child with a trach and a feeding tube.

>

> It was so difficult for me to see her. It just reminded me of the

> life I was envisioning (and the lives we both talked about

together)

> before Ben was born, the life she is living. I know my life is

> nothing like what I expected and have come to realize that even

> though life isn't what you expect, it can still be wonderful.

>

> That's why I don't understand why I had so much trouble with this

> situation? The one thing she said that was the hardest for me to

> swallow, was in response to me asking her how it was going. She

said

> that it is definitely harder than she expected, but when her

> daughter smiles at her or reaches for her in the morning... it

makes

> it all worth while. I had so much trouble with this because Ben

> doesn't smile or get excited to see me. He has a lot of cranial

> nerve problems and has no facial movement on his right and very

> little on his left. He does do this open mouth thing when he is

> excited, but I've often questioned if I'm reading too much into

it.

> I think he seems excited, but maybe I'm wrong. Maybe I just want

> that to be it?? I don't know. I just would love for Ben to show me

> some sign that he even knows who I am.

>

> We just work so hard, day in, day out on all of Ben's therapies

and

> I think I'm just at a point where I need a pep talk from the gang.

I

> compare it to going on a diet. Say for instance you have been

> dieting like crazy, following all the rules, going to the gym 3

> times a day AND you only lose a few pounds after a year. And your

> gym buddy whom you see three times a day doesn't even seem to

> recognize you. You tend to get frustrated and start looking for a

> way to refuel. You know you need to do it, but you really need a

> push in the right direction.

>

> Am I making any sense? I guess I'm just asking for a push in the

> right direction from people who know what I'm talking about.

>

> Fondly-

> Amy Russo

> Mom to Ben Russo (12 month old CHARGEr)

>

Hi Amy,

I know exactly how you are feeling. I have several friends who

have kids a year younger than and watching them bypass my son

in their milestones is really hard to watch. Their kids are running

and starting to talk a lot and mine is just taking a few wobbly

steps and can't say a word. The thing that refuels me is the

support I get from family and friends. You were blessed with a

beautiful little boy and no one can love him or be strong enough to

see him through these struggles like you can. I find that the

tiniest improvements in 's development are such major milestones

that I cannot imagine feeling this proud if he were " normal " . Keep

the faith and know that we are in this together!

, mom to Ben(5) & (2), CHARGE

August 21, 2006

Amy,

I know how you feel!!!! My best friend and I found out a week from

eachother that we were both pregnant and her son was born 2 weeks

after Eva was born and he is walking and talking and being silly all

the time. He even says my name and it melts my heart but at the same

time Eva doesnt talk or walk she can't even sit. At the beginning my

heart would hurt and I had a hard time watching her son it milestone

and Eva still not able to do much of anything. Then her being in and

out of the hospital and all it really hurt. But I have learned that

she was given to me for a reason and I look at her everyday and I

see so much in her eyes and I know I will have my day for her to

have her milestones. Also they love her so much and I know they

would give anything for her.

Hang in there hun I know some days can be harder then others but you

will have your day with Ben.

Hugs,

Crystal mom to (10), (3), and Eva (16 month CHARGEr)

wife to Dan

>

> Hi everyone-

>

> So this past weekend I was out with some of my old coworkers and

one

> of them brought their 10 month old daughter along. Their daughter

> was supposed to be due two days after my son Ben (12 month old

> CHARGEr- 10 months adjusted). She too is a stay at home mom, with

> obviously completely different daily tasks than that required of a

> special needs child with a trach and a feeding tube.

>

> It was so difficult for me to see her. It just reminded me of the

> life I was envisioning (and the lives we both talked about

together)

> before Ben was born, the life she is living. I know my life is

> nothing like what I expected and have come to realize that even

> though life isn't what you expect, it can still be wonderful.

>

> That's why I don't understand why I had so much trouble with this

> situation? The one thing she said that was the hardest for me to

> swallow, was in response to me asking her how it was going. She

said

> that it is definitely harder than she expected, but when her

> daughter smiles at her or reaches for her in the morning... it

makes

> it all worth while. I had so much trouble with this because Ben

> doesn't smile or get excited to see me. He has a lot of cranial

> nerve problems and has no facial movement on his right and very

> little on his left. He does do this open mouth thing when he is

> excited, but I've often questioned if I'm reading too much into

it.

> I think he seems excited, but maybe I'm wrong. Maybe I just want

> that to be it?? I don't know. I just would love for Ben to show me

> some sign that he even knows who I am.

>

> We just work so hard, day in, day out on all of Ben's therapies

and

> I think I'm just at a point where I need a pep talk from the gang.

I

> compare it to going on a diet. Say for instance you have been

> dieting like crazy, following all the rules, going to the gym 3

> times a day AND you only lose a few pounds after a year. And your

> gym buddy whom you see three times a day doesn't even seem to

> recognize you. You tend to get frustrated and start looking for a

> way to refuel. You know you need to do it, but you really need a

> push in the right direction.

>

> Am I making any sense? I guess I'm just asking for a push in the

> right direction from people who know what I'm talking about.

>

> Fondly-

> Amy Russo

> Mom to Ben Russo (12 month old CHARGEr)

>

August 21, 2006

Amy-

I have twangs of guilt when I'm feeling sad about not having that life I'd

envisioned. I think we have to allow ourselves to feel the loss and the

" what if " on occasion without feeling guilty for it. It's quite possible to

absolutely love our children, completely appreciate all of the enlightenment

and richness CHARGE has brought into our lives, and still have pangs of

wishing for that life we'd been expecting.

Now that Aubrie is 8 yrs old, she does most of the things her peers do -

just differently. She walks, runs, plays, talks, eats, etc. I am hit with

it when we're at the pool and she still prefers the baby pool (which is

supposed to be for under age 5) while her peers are jumping off the diving

board. This year she finally learned to be in the 3' section and enjoy

herself - although she can't even begin to keep up with her friends' games

and antics. The neighbor girl was a wonderful playmate in past summers.

But this summer she's been able to go to the pool alone and ride her bike

around town with friends. Aubrie can't do either of those things. So the

differences are there, but we can orchestrate our life to be in situations

and with people that don't point it out. We make plans to do things with

friends that Aubrie can participate in equally. We're fortunate that we

have a few good friends that understand her and work within her limits. She

also has a friend her age with MD that is in the same Brownie troop (and her

mom's the leader) so they are together in struggling with some of the

activities (and her mom plans activities with both girls in mind).

When Aubrie was the age of Ben, I was still very upset at having " lost my

life " . I felt no hope that I'd ever have time and energy for myself or for

my own endeavors. I had been a stay-at-home mom and then home day care

provider when my son was little, so being at home wasn't the problem. But I

couldn't even do day care with Aubrie's medical needs. And we couldn't do

the playgroups and other activities with her age mates like we'd done with

his. Eventually, I was able to work part-time. I love the work I am doing

and I never would have been taken down this route without CHARGE. So I

have found a way to have " my life " again. That's been critical for my

sanity.

I think the best way to refuel after those discouraging times is simply to

let the feelings be there, acknowledge them without guilt, and then get on

with it. They will come to the surface from time to time without warning.

So you have to be accepting and ready whenever they come. Don't let

yourself get caught up in wallowing in it and worrying about when it will

end. Just know that it's that old feeling coming back for a visit, say

" hello " , and let it go. Don't invite it to stay any longer than it needs

to!

I am able to share those feelings with friends (even those who do not have

kids with disabilities). They've heard me say it enough that I guess they

are beginning to understand. One friend has a young adult son with a cleft

palate and learning disabilities so she's been a wonderful comrade from the

start.

Gosh, I could go on and on. but I'm not sure that would refuel you. It

might add fuel to the fire instead!!

Michele W

Mom to Aubrie 8 yrs CHaRgE and 14 yrs, wife to DJ

..

<http://geo.yahoo.com/serv?s=97359714 & grpId=24022 & grpspId=1600061498 & msgId=8

0031 & stime=1156123224 & nc1=3911045 & nc2=3848485 & nc3=3848581>

August 21, 2006

Hi Amy,

It will always be hard for you when you see other kids the same age

as Ben and you will always compare him to those kids and you will

probably always want to shake the mother of those " normal " kids when

they whine about how hard things are for them and you will always

want to give them a reality check about how they should appreciate

what they have and stop whinging about the small stuff, but you just

wait and see how proud you feel about the slightest smile from Ben

and let me tell you something Amy, he IS excited, he IS happy to see

you, you are the most important person in the world to him. He may

be unable to show you in a physical way right now, but wait! When

he does (and he will) wrap his arms around you and kiss you, it will

be worth more to you than anything else on earth, your heart will

burst and the tears will fall and everyone else with a " normal " kid

will never be able to understand that feeling.

Good luck

('s mom in Australia)

http://begasfamily.blogspot.com/

>

> Hi everyone-

>

> So this past weekend I was out with some of my old coworkers and

one

> of them brought their 10 month old daughter along. Their daughter

> was supposed to be due two days after my son Ben (12 month old

> CHARGEr- 10 months adjusted). She too is a stay at home mom, with

> obviously completely different daily tasks than that required of a

> special needs child with a trach and a feeding tube.

>

> It was so difficult for me to see her. It just reminded me of the

> life I was envisioning (and the lives we both talked about

together)

> before Ben was born, the life she is living. I know my life is

> nothing like what I expected and have come to realize that even

> though life isn't what you expect, it can still be wonderful.

>

> That's why I don't understand why I had so much trouble with this

> situation? The one thing she said that was the hardest for me to

> swallow, was in response to me asking her how it was going. She

said

> that it is definitely harder than she expected, but when her

> daughter smiles at her or reaches for her in the morning... it

makes

> it all worth while. I had so much trouble with this because Ben

> doesn't smile or get excited to see me. He has a lot of cranial

> nerve problems and has no facial movement on his right and very

> little on his left. He does do this open mouth thing when he is

> excited, but I've often questioned if I'm reading too much into

it.

> I think he seems excited, but maybe I'm wrong. Maybe I just want

> that to be it?? I don't know. I just would love for Ben to show me

> some sign that he even knows who I am.

>

> We just work so hard, day in, day out on all of Ben's therapies

and

> I think I'm just at a point where I need a pep talk from the gang.

I

> compare it to going on a diet. Say for instance you have been

> dieting like crazy, following all the rules, going to the gym 3

> times a day AND you only lose a few pounds after a year. And your

> gym buddy whom you see three times a day doesn't even seem to

> recognize you. You tend to get frustrated and start looking for a

> way to refuel. You know you need to do it, but you really need a

> push in the right direction.

>

> Am I making any sense? I guess I'm just asking for a push in the

> right direction from people who know what I'm talking about.

>

> Fondly-

> Amy Russo

> Mom to Ben Russo (12 month old CHARGEr)

>

August 21, 2006

it can be hard for even us chargers i no i find it hard soemtiems i used to

c people staying over nite at places lie my cousins would go to sleep overs

id b liek wish i could do this and then i found sev and her mum just

include4d me in al sleep overs they have LOL and she learned m pump to

>

> Hi Amy,

> It will always be hard for you when you see other kids the same age

> as Ben and you will always compare him to those kids and you will

> probably always want to shake the mother of those " normal " kids when

> they whine about how hard things are for them and you will always

> want to give them a reality check about how they should appreciate

> what they have and stop whinging about the small stuff, but you just

> wait and see how proud you feel about the slightest smile from Ben

> and let me tell you something Amy, he IS excited, he IS happy to see

> you, you are the most important person in the world to him. He may

> be unable to show you in a physical way right now, but wait! When

> he does (and he will) wrap his arms around you and kiss you, it will

> be worth more to you than anything else on earth, your heart will

> burst and the tears will fall and everyone else with a " normal " kid

> will never be able to understand that feeling.

> Good luck

> ('s mom in Australia)

> http://begasfamily.blogspot.com/

>

> >

> > Hi everyone-

> >

> > So this past weekend I was out with some of my old coworkers and

> one

> > of them brought their 10 month old daughter along. Their daughter

> > was supposed to be due two days after my son Ben (12 month old

> > CHARGEr- 10 months adjusted). She too is a stay at home mom, with

> > obviously completely different daily tasks than that required of a

> > special needs child with a trach and a feeding tube.

> >

> > It was so difficult for me to see her. It just reminded me of the

> > life I was envisioning (and the lives we both talked about

> together)

> > before Ben was born, the life she is living. I know my life is

> > nothing like what I expected and have come to realize that even

> > though life isn't what you expect, it can still be wonderful.

> >

> > That's why I don't understand why I had so much trouble with this

> > situation? The one thing she said that was the hardest for me to

> > swallow, was in response to me asking her how it was going. She

> said

> > that it is definitely harder than she expected, but when her

> > daughter smiles at her or reaches for her in the morning... it

> makes

> > it all worth while. I had so much trouble with this because Ben

> > doesn't smile or get excited to see me. He has a lot of cranial

> > nerve problems and has no facial movement on his right and very

> > little on his left. He does do this open mouth thing when he is

> > excited, but I've often questioned if I'm reading too much into

> it.

> > I think he seems excited, but maybe I'm wrong. Maybe I just want

> > that to be it?? I don't know. I just would love for Ben to show me

> > some sign that he even knows who I am.

> >

> > We just work so hard, day in, day out on all of Ben's therapies

> and

> > I think I'm just at a point where I need a pep talk from the gang.

> I

> > compare it to going on a diet. Say for instance you have been

> > dieting like crazy, following all the rules, going to the gym 3

> > times a day AND you only lose a few pounds after a year. And your

> > gym buddy whom you see three times a day doesn't even seem to

> > recognize you. You tend to get frustrated and start looking for a

> > way to refuel. You know you need to do it, but you really need a

> > push in the right direction.

> >

> > Am I making any sense? I guess I'm just asking for a push in the

> > right direction from people who know what I'm talking about.

> >

> > Fondly-

> > Amy Russo

> > Mom to Ben Russo (12 month old CHARGEr)

> >

>

August 21, 2006

just relised my post probly didnt make sence wat i was trying to say is that

coz my friends have disabilities like me her mum takes the time to include

me while others dont but i allways used to find it hard LOL

>

> it can be hard for even us chargers i no i find it hard soemtiems i used

> to c people staying over nite at places lie my cousins would go to sleep

> overs id b liek wish i could do this and then i found sev and her mum just

> include4d me in al sleep overs they have LOL and she learned m pump to

>

> >

> > Hi Amy,

> > It will always be hard for you when you see other kids the same age

> > as Ben and you will always compare him to those kids and you will

> > probably always want to shake the mother of those " normal " kids when

> > they whine about how hard things are for them and you will always

> > want to give them a reality check about how they should appreciate

> > what they have and stop whinging about the small stuff, but you just

> > wait and see how proud you feel about the slightest smile from Ben

> > and let me tell you something Amy, he IS excited, he IS happy to see

> > you, you are the most important person in the world to him. He may

> > be unable to show you in a physical way right now, but wait! When

> > he does (and he will) wrap his arms around you and kiss you, it will

> > be worth more to you than anything else on earth, your heart will

> > burst and the tears will fall and everyone else with a " normal " kid

> > will never be able to understand that feeling.

> > Good luck

> > ('s mom in Australia)

> > http://begasfamily.blogspot.com/

> >

> > >

> > > Hi everyone-

> > >

> > > So this past weekend I was out with some of my old coworkers and

> > one

> > > of them brought their 10 month old daughter along. Their daughter

> > > was supposed to be due two days after my son Ben (12 month old

> > > CHARGEr- 10 months adjusted). She too is a stay at home mom, with

> > > obviously completely different daily tasks than that required of a

> > > special needs child with a trach and a feeding tube.

> > >

> > > It was so difficult for me to see her. It just reminded me of the

> > > life I was envisioning (and the lives we both talked about

> > together)

> > > before Ben was born, the life she is living. I know my life is

> > > nothing like what I expected and have come to realize that even

> > > though life isn't what you expect, it can still be wonderful.

> > >

> > > That's why I don't understand why I had so much trouble with this

> > > situation? The one thing she said that was the hardest for me to

> > > swallow, was in response to me asking her how it was going. She

> > said

> > > that it is definitely harder than she expected, but when her

> > > daughter smiles at her or reaches for her in the morning... it

> > makes

> > > it all worth while. I had so much trouble with this because Ben

> > > doesn't smile or get excited to see me. He has a lot of cranial

> > > nerve problems and has no facial movement on his right and very

> > > little on his left. He does do this open mouth thing when he is

> > > excited, but I've often questioned if I'm reading too much into

> > it.

> > > I think he seems excited, but maybe I'm wrong. Maybe I just want

> > > that to be it?? I don't know. I just would love for Ben to show me

> > > some sign that he even knows who I am.

> > >

> > > We just work so hard, day in, day out on all of Ben's therapies

> > and

> > > I think I'm just at a point where I need a pep talk from the gang.

> > I

> > > compare it to going on a diet. Say for instance you have been

> > > dieting like crazy, following all the rules, going to the gym 3

> > > times a day AND you only lose a few pounds after a year. And your

> > > gym buddy whom you see three times a day doesn't even seem to

> > > recognize you. You tend to get frustrated and start looking for a

> > > way to refuel. You know you need to do it, but you really need a

> > > push in the right direction.

> > >

> > > Am I making any sense? I guess I'm just asking for a push in the

> > > right direction from people who know what I'm talking about.

> > >

> > > Fondly-

> > > Amy Russo

> > > Mom to Ben Russo (12 month old CHARGEr)

> > >

> >

>

August 21, 2006

Hello;

I believe in recarnation, that every single soul that is born has their own

blue plan, they plan out their lives, pick their parents, do everything and

choose their own challenges, and everything that comes with living a life as a

human being on earth.

We choose our own life themes, and we (CHARGErs) choose Fallibility - Only the

most advanced spirits willingly take on the theme of fallibility and choose to

be born with physical, mental, or emotional challenges. On earth they teach

volumes as both good and bad examples of how to deal with special hurdles, and

at home they are among the gifted teachers and Orientators.

The world needs a teacher who is better than any teacher in the world, and

that kind of teacher is a person who has a disability. They teach the world a

lesson straight from the heart, a lesson no one else can teach us. We are

survivors, champions in the face of defeat, and if I can do it, so can you.

Not every single person is fit to be a parent. There are parents who don't

care that their child has a disability and will never fight. There are parents

who are fantastic parents, who will fight for their child no matter what. While

making their blueplan, they also choose parents who will love unconditionally,

and will fight for them when they can't fight for themselves.

We are here to learn and teach something about life, before going home to God.

People who are parents to children with disabilities, People who have siblings

with disabilities, and people who are disabled themselves have already learned

and taught a valuable lesson in love, compassion, respect, kindess, confidence,

I could go on and on, where the ones who don't experience what it's like to be

disabled, or have a person they know who is disabled, will never learn or be

taught what we already know.

Sincerely yours; Krista Bach.

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

Make free worldwide PC-to-PC calls. Try the new Yahoo! Canada Messenger with

Voice

August 21, 2006

kirsta i like ur thoughts there some of the families of my firends most of

them that r ready to get up and fight and advocate for not only for them but

for their friends to liek me my best friends mum is more than happy to

listen to my complaints bout services LOL and i do have friends whos

families just dont care one rticula friend its up to sevs mum or my fam to

help that person well u no do fun stuff toher wise she stays at home when

shes nto at school LOL

>

> Hello;

>

> I believe in recarnation, that every single soul that is born has their

> own blue plan, they plan out their lives, pick their parents, do everything

> and choose their own challenges, and everything that comes with living a

> life as a human being on earth.

>

> We choose our own life themes, and we (CHARGErs) choose Fallibility - Only

> the most advanced spirits willingly take on the theme of fallibility and

> choose to be born with physical, mental, or emotional challenges. On earth

> they teach volumes as both good and bad examples of how to deal with special

> hurdles, and at home they are among the gifted teachers and Orientators.

>

> The world needs a teacher who is better than any teacher in the world, and

> that kind of teacher is a person who has a disability. They teach the world

> a lesson straight from the heart, a lesson no one else can teach us. We are

> survivors, champions in the face of defeat, and if I can do it, so can you.

>

> Not every single person is fit to be a parent. There are parents who don't

> care that their child has a disability and will never fight. There are

> parents who are fantastic parents, who will fight for their child no matter

> what. While making their blueplan, they also choose parents who will love

> unconditionally, and will fight for them when they can't fight for

> themselves.

>

> We are here to learn and teach something about life, before going home to

> God. People who are parents to children with disabilities, People who have

> siblings with disabilities, and people who are disabled themselves have

> already learned and taught a valuable lesson in love, compassion, respect,

> kindess, confidence, I could go on and on, where the ones who don't

> experience what it's like to be disabled, or have a person they know who is

> disabled, will never learn or be taught what we already know.

>

> Sincerely yours; Krista Bach.

>

> ---------------------------------

> Make free worldwide PC-to-PC calls. Try the new Yahoo! Canada Messenger

> with Voice

>

August 21, 2006

Krista,

What words you have. Thanks for that.

If I could only have the understanding that Patty has, but I can't. I can

only emphasize. She has learned more than I can know. She's truly a gift.

That goes for all, including thankfully you!

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

August 21, 2006

Hi Amy. I appreciate your honesty so much about your human response to

seeing your old coworker and her daughter interacting. Please understnad that I

think all of us have felt this way before. We have our up and down days.... not

feeling sorry for ourselves! but, rather feeling those same questions arising

in our soul for our children. I am sure that Ben is responding to you if you

feel that he is, Amy. Please feel better. We are thinking of you and

relating to you!!

Chrystal

Arleigh and Chrystine (CHaRGE)'s mother

August 21, 2006

Amy,

Those painful experiences always caught me by surprise. I would think they

were gone, they had passed, or I had overcome the grief. And then something

would jump up and would just slap me in the face. I was shocked that simple

words or simple situations would evoke such a response in me. I don't think I

could fight it, or be prepared for it-it hides, and when it comes, it has

proved to be much bigger than I realized, so it must be mericful that we feel

it in small doses, that we can recover from. I believe that if we can let

that grief come out of us, which means feeling the pain, without it capturing

us, then we have a new place of freed-up energy in us. And, because we love

so much, we take that newly recovered energy back to our children and our

hopes and our dreams.

There's a saying " one who never knows darkness can never know light " .

I am sure that Ben is responding to you, that he knows and loves you.

I believe 100% that we also are Spirit, and that nothing goes unoticed, that

each good thing we do is known and accepted and carries the very deepest

meaning and weight. That it is the place where love comes from, and love is

received and acknowledged. I don't know where I'd be if I didn't incorporate

this

relationship into my life and my heart. It was a step from empty into full,

from anger to acceptance, from weakness to strength, from lonliness to never

alone, fear to confidence. My experiences show me its very real, and available

to all.

Each time life gives me a big challenge now, I know its a call to come back

to Spirit. When I do that first, life gets better. That's what I've

learned, and how I manage.

Peace, in Ma. (, 21 yrs)

August 21, 2006

Amy,

Just when you think you've got it all under control....a situation like this

pops up and it surprises the HECK out of you, that it upset you so. You

think you've got it all reconciled in your head and it's literally a shock

when a situation like this happens and you find yourself welling up behind

the strong exterior you've constructed to deal with the fact that you are,

living a " different life " .

I have had these moments myself and they surprise me because they seem to

come out of nowhere and they hit you like a Mack truck and you're trying to

keep control of yourself in front of others because you always " handle

things so well " and everyone is " so proud of you " and you really don't want

to crumble in front of everyone.

I will tell you that these moments are fewer now but you know what? They

still happen sporadically and sometimes it's the silliest little thing that

others would find so insignificant (I still remember the last one vividly).

They probably always will and I think we will always carry some amount of

grief with us for as long as we live. We will always know certain

things: we will always know how much harder our children have to work than

others to do certain things, we will always know how they have suffered

through medical situations that their peers will never experience, etc, and

that's got to work on you psychologically at some level, I don't care how

" strong " you are. I just try to accept that situations like that are going

to happen in this life with Kennedy and when I'm alone or with Graeme, I can

let my floodgates open, and go on again.

I can say with certainty from my particular situation that for every

agonizing, shocking, upsetting situation like that, there are at least 100

celebratory, happy, and triumphant situations when it comes to Kennedy. I

think we just get a little numb to those maybe sometimes and the emotion

doesn't seem as strong as when a " negative " surprise situation comes up,

because there truly is SO much that we don't take for granted with these

children and we do spend a TON of time celebrating every little thing.

I realize this may not be what you were looking for, but your post really

spoke to me this morning because I can really relate to the " why the HECK

did that upset me so much??? " thing...

Hugs from the North,

Mom to Kennedy 8 (CHARGE), 17, 15, and wife to Graeme

New Brunswick, Canada

http://www.chargesyndrome.info

>

> Hi everyone-

>

> So this past weekend I was out with some of my old coworkers and one

> of them brought their 10 month old daughter along. Their daughter

> was supposed to be due two days after my son Ben (12 month old

> CHARGEr- 10 months adjusted). She too is a stay at home mom, with

> obviously completely different daily tasks than that required of a

> special needs child with a trach and a feeding tube.

>

> It was so difficult for me to see her. It just reminded me of the

> life I was envisioning (and the lives we both talked about together)

> before Ben was born, the life she is living. I know my life is

> nothing like what I expected and have come to realize that even

> though life isn't what you expect, it can still be wonderful.

>

> That's why I don't understand why I had so much trouble with this

> situation? The one thing she said that was the hardest for me to

> swallow, was in response to me asking her how it was going. She said

> that it is definitely harder than she expected, but when her

> daughter smiles at her or reaches for her in the morning... it makes

> it all worth while. I had so much trouble with this because Ben

> doesn't smile or get excited to see me. He has a lot of cranial

> nerve problems and has no facial movement on his right and very

> little on his left. He does do this open mouth thing when he is

> excited, but I've often questioned if I'm reading too much into it.

> I think he seems excited, but maybe I'm wrong. Maybe I just want

> that to be it?? I don't know. I just would love for Ben to show me

> some sign that he even knows who I am.

>

> We just work so hard, day in, day out on all of Ben's therapies and

> I think I'm just at a point where I need a pep talk from the gang. I

> compare it to going on a diet. Say for instance you have been

> dieting like crazy, following all the rules, going to the gym 3

> times a day AND you only lose a few pounds after a year. And your

> gym buddy whom you see three times a day doesn't even seem to

> recognize you. You tend to get frustrated and start looking for a

> way to refuel. You know you need to do it, but you really need a

> push in the right direction.

>

> Am I making any sense? I guess I'm just asking for a push in the

> right direction from people who know what I'm talking about.

>

> Fondly-

> Amy Russo

> Mom to Ben Russo (12 month old CHARGEr)

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

August 21, 2006

Krista-

That's a beautiful way to look at things. I have a friend who's very into

the same ideas. It fits with the Christian belief that God has a plan. It

just reworks it to your own soul developing your plan. I am not saying any

one view is better or right - I am not a card-carrying anything. I find it

fascinating how each of the different belief systems say similar things but

from a different point of view. We're really all in this together, making

sense of life in our own ways.

I like the idea that I am here to learn these particular lessons I've been

faced with. And that all of those around me have been brought into my world

to teach me or to learn from me. It helps to let go and let be when you

believe that there is a rhyme or reason to it - whether your soul chose it

or the universe chose it or God chose it or whomever.

There's an interesting parable about a cracked water vessel and the lady

carrying water from the well. I can't remember it. do you know what I'm

talking about?? I think it goes like this: The woman is carrying 2 water

vessels from the well each day. They are strapped on each end of a yoke

carried across her back/neck. One of the vessels has a crack in it and

drips water all the way back from the water source. That vessel feels badly

cause it's not serving it's purpose. By the time she gets home, it's empty.

But turns out that it has another purpose. As she's walking home from the

water source, the flowers along the path are being watered by the leaking

vessel! So even our " faults " have purpose. Sometimes we just don't see

what those purposes are. Sometimes they are not as we expect them to be.

Michele W

Aubrie's mom 8 yrs

August 21, 2006

My heart goes out to you. I have twin daughters, one with CHARGE. It is a

daily reminder EVERY DAY how far Meagan has fallen behind. It is daily

reminder how different it is to raise the two of them. When Meagan is not

home, and it's just my 4 year old and my typical twin, I often think 'this

is what it is supposed to be like'. It is a horrible thought and I hate that

it even comes to my mind. But, I have photos of my kids all over the house,

and I often think if I were to lose Meagan, how painful it would be. She has

brain surgery one week from today. This is going to be a HUGE challenge for

her. The thought of losing her is in the front of my mind all of the time

these days. So, instead of thinking 'this is what is supposed to be like', I

try to think 'this is what it would be like without her'. It sickens me to

go there. This new lifestyle we live is very different, and can be very

cruel. But, these children were " given " to us for a reason. I want to do the

best I can for her, even if it is a lot of work. I just can't imagine her

anywhere else but with me. Don't get me wrong, I have felt sorry for myself

a ton! We all need to mourn the loss of our " perfect " child. But just keep

in mind. He is perfect...perfect for you, and you perfect for him. Keep your

chin up Hon. We're here to carry you through the tough times!

, mommy to Meagan (CHaRgE) and 22 month twins, and big brother

4 years, married to the best daddy in the world for 9 years!

-- Really hit me hard