Considering adopting a baby with CHARGE

[Guest guest]

Dear CHARGE community,

I am an adoptive mother and am hopefully being considered to adopt a

baby that has CHARGE Syndrome. I am trying to learn more about this

Syndrome and what life is like both for a parent of a child with

CHARGE and to hear from young adults/adults who have CHARGE. While

I have only just submitted my interest in being considered for him,

and thus do not know if my family is even in the running to adopt

him (it is a complicated process to adopt, and more familes are

rejected than are chosen for a given child, so I may be getting

ahead of myself), I wondered if you all can give me some insight

into what things I should be considering and what questions I should

ask if they decide to consider my family and open the door for

asking questions.

I have researched a coupleof other syndromes in teh Past (APERT and

Crouzons) as we were in teh final running for a baby with APERT

about a year ago (her birth parents ended up choseing a different

family in teh end) but I learned a great deal about issues

associated with craniofacial syndromes, and what challenges people

face, both as a family member and a person with the syndrome. I

have read up on the information provided through the CHARGE

foundation, and from teh brief description I have of the baby, I

have a general idea of the possible challenges (he is 3 months old,

has had surgery to repair and revise choanal atresia, he has a g-

tube, and some hearing loss, as well as ASD and PDA heart issues).

Thanks for any insights or information that you can share, and send

us your good thoughts so that we may be considered for him and

hopefully be chosen as his forever family.

Blessings and thanks,

[Guest guest]

, the best thing I can tell you from my perspective is to visit the

web site I did about my daughter, Kennedy. It has her history/medical

stuff/where she is now/etc... if you have any questions after you see it,

let me know...http://www.chargesyndrome.info

PS - good luck!

>

> Dear CHARGE community,

>

> I am an adoptive mother and am hopefully being considered to adopt a

> baby that has CHARGE Syndrome. I am trying to learn more about this

> Syndrome and what life is like both for a parent of a child with

> CHARGE and to hear from young adults/adults who have CHARGE. While

> I have only just submitted my interest in being considered for him,

> and thus do not know if my family is even in the running to adopt

> him (it is a complicated process to adopt, and more familes are

> rejected than are chosen for a given child, so I may be getting

> ahead of myself), I wondered if you all can give me some insight

> into what things I should be considering and what questions I should

> ask if they decide to consider my family and open the door for

> asking questions.

>

> I have researched a coupleof other syndromes in teh Past (APERT and

> Crouzons) as we were in teh final running for a baby with APERT

> about a year ago (her birth parents ended up choseing a different

> family in teh end) but I learned a great deal about issues

> associated with craniofacial syndromes, and what challenges people

> face, both as a family member and a person with the syndrome. I

> have read up on the information provided through the CHARGE

> foundation, and from teh brief description I have of the baby, I

> have a general idea of the possible challenges (he is 3 months old,

> has had surgery to repair and revise choanal atresia, he has a g-

> tube, and some hearing loss, as well as ASD and PDA heart issues).

>

> Thanks for any insights or information that you can share, and send

> us your good thoughts so that we may be considered for him and

> hopefully be chosen as his forever family.

> Blessings and thanks,

>

>

>

>

--

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

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

[Guest guest]

-

Bless you for considering adopting at all and double blessings for

considering a child with known challenges. From your post, I felt warmth

and hope and smiles - not what most of us brought with us as we took our

first steps into CHARGEland! Most of us arrived with fear and anxiety and

grief. But, you know, as we adjust to the shock of our children's births,

many of us find that our lives are absolutely changed for the positive

because of the challenges our children face. Not that we wouldn't remove

all that for our child's sake if we had a magic wand to do it!! But you

know what I mean.

The difficulty with CHARGE is in knowing how it will manifest in each

person. At infancy, it's very hard to predict the future of a child because

CHARGE is so complex and variable.

My daughter, Aubrie, is now 8 yrs old. She didn't have choanal atresia, but

she does have hearing loss, vision loss, heart issues, hip problems, speech

difficulties, feeding problems in infancy, etc. When she was born, we

didn't know if she'd see or hear, eat, walk, talk. but she does it all!

Much of how she gets through life is different than her peers, but she does

it. If you visit Kennedy's site, Aubrie is very much like Kennedy. When we

viewed the site together, Aubrie and I noted all the similarities.

There are CHARGE adults who have no formal communication and are immobile.

But there are CHARGE adults with jobs and friends, live independently, etc.

So the variation is huge.

If you are lucky enough to add this baby to your family, you'll

automatically be a part of this greater CHARGE family around the world.

Having the support and knowledge provided by everyone here will help you to

raise that child to become all he/she can be. The key is to access

services, ask questions, be a strong and knowledgeable advocate, and love,

love, love your child.

From your post, it seems that you will be an amazing mommy for whatever

child is lucky enough to call you " Mom " .

Michele W

[Guest guest]

Your interest in his care and others with Charge tells me that you would be

good for him. He sounds like a star to me. I have a little Charger myself. She

is 11 months old and really means something to EVERYONE she meets. I feel

sooooo lucky to have a little girl that inspires people who sometimes only hear

of her and never even meet her. That's how I feel about the Chargers and

mommies and Daddies on this listserv. Each is unique, each have wisdom and

caring beyond anything I have ever comprehended before. Having a daughter with

" special needs " has made me see things that are special. I really notice things

that never meant much to me before.... I know Chrystine's birth has changed

our family and community for the better and forever.

your friend,

chrystal

mama to arleigh, chrystine CHaRGE, and silas

[Guest guest]

hey heather nice to meeet u in here im a charger as we call our selves lol

im 21 ive had and still do have many problems i am in aus sydney where

abouts r u i think you are in america most of the families here r from there

somewhere lol ive got hearing loss colibomas oesteprosis and other hormonal

probs gut probs and much more stuff hugs to you ellen xxxxxx

>

> -

>

> Bless you for considering adopting at all and double blessings for

> considering a child with known challenges. From your post, I felt warmth

> and hope and smiles - not what most of us brought with us as we took our

> first steps into CHARGEland! Most of us arrived with fear and anxiety and

> grief. But, you know, as we adjust to the shock of our children's births,

> many of us find that our lives are absolutely changed for the positive

> because of the challenges our children face. Not that we wouldn't remove

> all that for our child's sake if we had a magic wand to do it!! But you

> know what I mean.

>

> The difficulty with CHARGE is in knowing how it will manifest in each

> person. At infancy, it's very hard to predict the future of a child

> because

> CHARGE is so complex and variable.

>

> My daughter, Aubrie, is now 8 yrs old. She didn't have choanal atresia,

> but

> she does have hearing loss, vision loss, heart issues, hip problems,

> speech

> difficulties, feeding problems in infancy, etc. When she was born, we

> didn't know if she'd see or hear, eat, walk, talk. but she does it all!

> Much of how she gets through life is different than her peers, but she

> does

> it. If you visit Kennedy's site, Aubrie is very much like Kennedy. When we

> viewed the site together, Aubrie and I noted all the similarities.

>

> There are CHARGE adults who have no formal communication and are immobile.

> But there are CHARGE adults with jobs and friends, live independently,

> etc.

> So the variation is huge.

>

> If you are lucky enough to add this baby to your family, you'll

> automatically be a part of this greater CHARGE family around the world.

> Having the support and knowledge provided by everyone here will help you

> to

> raise that child to become all he/she can be. The key is to access

> services, ask questions, be a strong and knowledgeable advocate, and love,

> love, love your child.

>

> From your post, it seems that you will be an amazing mommy for whatever

> child is lucky enough to call you " Mom " .

>

> Michele W

>

>

[Guest guest]

Hi , I hope you get that little guy. I hope that you get to be the

one to tell us all about him growing up and stuff!

Anyways im 27 (28 in a month). Im from Canada. I have CHARGE.

Welcome to our family

Chantelle

>

> hey heather nice to meeet u in here im a charger as we call our selves lol

> im 21 ive had and still do have many problems i am in aus sydney where

> abouts r u i think you are in america most of the families here r from

> there

> somewhere lol ive got hearing loss colibomas oesteprosis and other

> hormonal

> probs gut probs and much more stuff hugs to you ellen xxxxxx

>

>

> >

> > -

> >

> > Bless you for considering adopting at all and double blessings for

> > considering a child with known challenges. From your post, I felt warmth

> > and hope and smiles - not what most of us brought with us as we took our

> > first steps into CHARGEland! Most of us arrived with fear and anxiety

> and

> > grief. But, you know, as we adjust to the shock of our children's

> births,

> > many of us find that our lives are absolutely changed for the positive

> > because of the challenges our children face. Not that we wouldn't remove

> > all that for our child's sake if we had a magic wand to do it!! But you

> > know what I mean.

> >

> > The difficulty with CHARGE is in knowing how it will manifest in each

> > person. At infancy, it's very hard to predict the future of a child

> > because

> > CHARGE is so complex and variable.

> >

> > My daughter, Aubrie, is now 8 yrs old. She didn't have choanal atresia,

> > but

> > she does have hearing loss, vision loss, heart issues, hip problems,

> > speech

> > difficulties, feeding problems in infancy, etc. When she was born, we

> > didn't know if she'd see or hear, eat, walk, talk. but she does it all!

> > Much of how she gets through life is different than her peers, but she

> > does

> > it. If you visit Kennedy's site, Aubrie is very much like Kennedy. When

> we

> > viewed the site together, Aubrie and I noted all the similarities.

> >

> > There are CHARGE adults who have no formal communication and are

> immobile.

> > But there are CHARGE adults with jobs and friends, live independently,

> > etc.

> > So the variation is huge.

> >

> > If you are lucky enough to add this baby to your family, you'll

> > automatically be a part of this greater CHARGE family around the world.

> > Having the support and knowledge provided by everyone here will help you

> > to

> > raise that child to become all he/she can be. The key is to access

> > services, ask questions, be a strong and knowledgeable advocate, and

> love,

> > love, love your child.

> >

> > From your post, it seems that you will be an amazing mommy for whatever

> > child is lucky enough to call you " Mom " .

> >

> > Michele W

> >

> >

[Guest guest]

,

The little guy you described sounds similar to my now

15 month old little guy. (Choanal atresia, heart

defects, hearing loss, g-tube... add a facial palsy

and you would be describing my son!) Yes, he has been

through hell and back with his medical issues, but he

is an amazing, affectionate, and loving child.

I'd be happy to answer any questions you have. Feel

free to email me directly or use the listerv.

Best wishes to you,

ina, mom to Luca (3) & Vinny (15 months w/ cHARgE)

--- hey1029 wrote:

> Dear CHARGE community,

>

> I am an adoptive mother and am hopefully being

> considered to adopt a

> baby that has CHARGE Syndrome. I am trying to learn

> more about this

> Syndrome and what life is like both for a parent of

> a child with

> CHARGE and to hear from young adults/adults who have

> CHARGE. While

> I have only just submitted my interest in being

> considered for him,

> and thus do not know if my family is even in the

> running to adopt

> him (it is a complicated process to adopt, and more

> familes are

> rejected than are chosen for a given child, so I may

> be getting

> ahead of myself), I wondered if you all can give me

> some insight

> into what things I should be considering and what

> questions I should

> ask if they decide to consider my family and open

> the door for

> asking questions.

>

> I have researched a coupleof other syndromes in teh

> Past (APERT and

> Crouzons) as we were in teh final running for a baby

> with APERT

> about a year ago (her birth parents ended up

> choseing a different

> family in teh end) but I learned a great deal about

> issues

> associated with craniofacial syndromes, and what

> challenges people

> face, both as a family member and a person with the

> syndrome. I

> have read up on the information provided through the

> CHARGE

> foundation, and from teh brief description I have of

> the baby, I

> have a general idea of the possible challenges (he

> is 3 months old,

> has had surgery to repair and revise choanal

> atresia, he has a g-

> tube, and some hearing loss, as well as ASD and PDA

> heart issues).

>

> Thanks for any insights or information that you can

> share, and send

> us your good thoughts so that we may be considered

> for him and

> hopefully be chosen as his forever family.

> Blessings and thanks,

>

>

>

>

>

__________________________________________________

[Guest guest]

,

To find out more about CHARGE you can go to the CHARGE Syndrome Foundation

webpage to learn more about it. Go to About CHARGE and then look at the Manual.

I have an adult daughter who has CHARGE. It sure has been a long road and is

one that will probably remain on the beaten path. But it is also a road that

leads to great truths, joys and an honor to ride. As a parent of a child who

has CHARGE there is much pain in your heart to work through this life for

your child. But there is a greater joy than can ever be described. I cannot

express the wonders unless you have the chance to go there. Not knowing of the

intensity of the child's diagnosis I don't think we can tell you much. It is

different for many.

I am also sure that it is not what I ever would have chosen. For you to

desire to adopt this child means to me you are a blessing to him or any child

you

will eventually be a mother to.

Bonnie

[Guest guest]

pls update us on whether u do get him xx

>

> ,

>

> To find out more about CHARGE you can go to the CHARGE Syndrome Foundation

>

> webpage to learn more about it. Go to About CHARGE and then look at the

> Manual.

>

> I have an adult daughter who has CHARGE. It sure has been a long road and

> is

> one that will probably remain on the beaten path. But it is also a road

> that

> leads to great truths, joys and an honor to ride. As a parent of a child

> who

> has CHARGE there is much pain in your heart to work through this life for

> your child. But there is a greater joy than can ever be described. I

> cannot

> express the wonders unless you have the chance to go there. Not knowing of

> the

> intensity of the child's diagnosis I don't think we can tell you much. It

> is

> different for many.

>

> I am also sure that it is not what I ever would have chosen. For you to

> desire to adopt this child means to me you are a blessing to him or any

> child you

> will eventually be a mother to.

>

> Bonnie

>

>