Re: Marriage and Relationships

[Guest guest]

In a message dated 2/14/2005 11:13:55 A.M. Eastern Standard Time,

lpanz516@... writes:

where did you meet??

does having sma put a strain on the relationship?

how do you handle daily living tasks?

are your husbands supportive?

what qualities do your mates hold?

how long have you been together?

how is pregnancy with sma?

who is your primary caregiver?

what do you do when you fight with your partner?

how did your mate relate to your sma when you met?

#1 We met through a mutual friend in 10th grade.

#2 No more than anything else, I guess. We got into the stupid situation of

him being my only caregiver which can be uber annoying at times - it has

benefits and drawbacks like anything else, though. We get to raise our daughter

and she doesn't go to daycare, etc.

#3 Physically? He helps me.

$4 of course

#5 he's very responsible and caring. he's pretty sweet, too! and a very good

dad. =)

#6 10 years

#7 It varies from woman to woman. Mine was better than anyone could've

imagined, aside from being extremely uncomfortable to downright excruciating as

she grew. The risks for me aren't worth having more biological kids, though.

Amy

Wife to Will 11/3/95

Mother to Olivia Isabelle 9/18/03

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

>where did you meet??

>

>

At college. We had a class together and then crossed paths again about

four or five months later.

>does having sma put a strain on the relationship?

>

>

Honestly, I think my clinical anxiety and depression put more of a

strain on our marriage. Having to depend on Lee for *everything* isn't

great either.

>how do you handle daily living tasks?

>

>

With Lee's or my kids' help. If I'm alone, as I often am, I try to

" wing it " or wait until someone gets home.

>are your husbands supportive?

>

>

Very, but we both can get pretty cranky.

>what qualities do your mates hold?

>

>

He seriously is the one person I've ever met, that says he only really

pays attention to inside traits instead of outside appearances, that

truely *does*.

>how long have you been together?

>

>

Engaged 14 years ago today. Married almost as long.

>how is pregnancy with sma?

>

>

http://www.isoc.net/brokeninside/nekrosys/pregnancy.htm

>who is your primary caregiver?

>

>

Lee

>what do you do when you fight with your partner?

>

>

Scream, cry, and shut myself in my room.

>how did your mate relate to your sma when you met?

>

>

It didn't seem to phase him a bit. Honestly.

--

Jenn Malatesta

http://www.isoc.net/brokeninside/nekrosys/

[Guest guest]

In a message dated 2/14/2005 11:14:16 AM Eastern Standard Time,

lpanz516@... writes:

where did you meet??

does having sma put a strain on the relationship?

how do you handle daily living tasks?

are your husbands supportive?

what qualities do your mates hold?

how long have you been together?

how is pregnancy with sma?

who is your primary caregiver?

what do you do when you fight with your partner?

how did your mate relate to your sma when you met?

Steve and I met on the internet, through a mutual friend who was living in

Pennsylvania. I was living in Chicago with my parents and Steve was living in

Maine with his brother. We first met face-to-face at my parents' house when

Steve moved back to Chicago, about seven months after we met online.

SMA doesn't necessarily put a strain on the relationship, no more than any

other everyday pressures we are forced to face. Sometimes Steve gets frustrated

that he has to do a lot of the physical stuff around the house or pertaining

to parenting, but all it takes is a reminder that I CANNOT do the stuff, it's

not that I do not want to, and he knew that getting into a relationship with

me. Once he is reminded that nothing was hidden about my abilities and

limitations from the very beginning, he tends to sort of snap back into reality

and is

okay.

I try to be as independent as possible with my personal daily needs, however

I am greatly restricted as to what I can physically do. My husband does still

help with SOME of my needs, but I have PAs for many hours throughout the day.

I would NEVER be with an unsupportive partner, and my hubby knows my feelings

on the matter!

Steve has a sense of humor, although some may deem it to be slightly twisted,

is patient, is sensitive to others without being overly sensitive, and he

doesn't let others really influence the way he leads his life, he lives life for

himself and his family and nobody else. Most importantly, he sees past

physical characteristics and gets to know/accept people from the inside out.

Steve and I met on the internet in March 1997, met face-to-face in October

1997, moved in together in November 1997, married in October 1998, and have been

together ever since.

Pregnancy with SMA is like pregnancy without SMA...each individual can have

very different experiences and each pregnancy, although the parents are the

same, has a tendency to be very different.

My primary caregivers are my husband and my full-time PA, .

I think our fights are fairly typical...we yell, swear, and get angry. We try

not to resort to name calling or mudslinging, but are not perfect and slip at

times. I have more of a temper than my hubby, and I have a tendency to leave

and take a walk when I find myself getting too heated. I honestly think we

went to bed angry only once in the eight years we've been together. We, most

often, just continue to duke it out until we talk it out.

Steve's overall attitude never changed after he found out I was disabled with

SMA. He knew what SMA was because his brother is a doctor, and he got a very

indepth explanation over the course of a few days. I took telling him about my

SMA harder than he did...I tried my hardest to push him away, I was the

biggest b**ch to him afterwards simply because I had gotten hurt numerous times

in

the past after telling guys about my disability. I put up my guard prior to

telling Steve, expecting the same or similar reactions, but I was proven wrong.

Amy M. Marquez

McHenry, Illinois

Spinal Muscular Atrophy (SMA) - Type 1

Mom to le Coral - Born July 19, 1999

Mom to Harley Jasmine - Born March 9, 2004

Colette - Retired Deceased Service Dog

Ella - Retired Service Dog

Loved Family Pets - Nala, the Lovable Lab; Dusty, the Snow-Gray Dwarf Bunny;

Angel, the Angelic-White Guinea Pig

[Guest guest]

In a message dated 4/12/2005 11:45:55 AM Eastern Daylight Time,

Ames24@... writes:

In a message dated 2/14/2005 11:14:16 AM Eastern Standard Time,

lpanz516@... writes:

where did you meet?? mda camp

does having sma put a strain on the relationship? not really, my bf is also

disabled. i'm stronger than he is so i do most of the physical stuff to an

extent.

how do you handle daily living tasks? i have nursing and pca's

are your husbands supportive? we arent married but yes he supports me better

than any ablebodied bf i ever had.

what qualities do your mates hold? we r complete opposittes. he's shy,

sweet, persistant, romantic, understanding, intelligent

how long have you been together? 2 yrs and a month

how is pregnancy with sma? n/a

who is your primary caregiver? nursing, pcas and when they arent here as a

last resort parents or friends or sister

what do you do when you fight with your partner? i win, haha

how did your mate relate to your sma when you met? since he is also disabled

he really had no prob...i actually was the one that had the prob w/him being

disabled. i never dated someone disabled be4 him. ironically things have

worked out great.

Kimi

[Guest guest]

In a message dated 5/4/2005 7:35:00 PM Eastern Standard Time,

charmedcripchic@... writes:

God bless those of you with sma that have managed motherhood, but my

personal advice is to stay away from that risk to your lives. Pregnancy is

difficult enough for able bodied women,

LOL We share a similar opinion! Then again, what's life without risk? I

could choke on my dinner this evening a bam! I'm a goner. Maybe I shouldn't

eat.

Amy

Wife to Will 11/3/95

Mother to Olivia Isabelle 9/18/03

A new addition due 12/05

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

In a message dated 5/4/2005 11:03:53 PM Eastern Standard Time,

charmedcripchic@... writes:

The problem is where do people like me and my friends (and I've met

far more that don't win at sma-mommy-roulette, than those as

fortunate as yourself)find the emotional peer support that we need?

Excuse me, but I've had 2 losses myself. I am VERY sorry you didn't get the

support you deserve, as I've been there. I also have next to no support as

a disabled mom and have many judgments placed upon me - from both peers and

stangers.

Amy

Wife to Will 11/3/95

Mother to Olivia Isabelle 9/18/03

A new addition due 12/05

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

In a message dated 5/4/2005 11:04:29 PM Eastern Standard Time,

charmedcripchic@... writes:

By the way you won't die if you don't breed but you will die if you

don't eat.

If I don't BREED? Last I checked I wasn't a dog.

I forgot to address your comment about disabled women minimizing the risks

of pregnancy. I have actually advised a lot of the girls who have asked me

about my experiences NOT to take the risk. I think I am one of the few who have

been brutally honest about everything I went through to become a mother. I

don't see the point in sugar coating the facts.

By the way I'm sure if you mean to come across this way, but you seem like

an incredibly bitter person.

Amy

Wife to Will 11/3/95

Mother to Olivia Isabelle 9/18/03

A new addition due 12/05

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

In a message dated 5/5/2005 1:14:11 AM Eastern Standard Time,

charmedcripchic@... writes:

I happen to be a mother myself. The only difference is your children

live on earth with you and mine wait or me in heaven.

I wouldn't treat any of you the way you're treating me if the

situation

were reversed.

Some of you have a lack of compassion for those of us dealing with

the

loss of a child.

SO ARE TWO OF MINE! Who is treating you so badly?!?

Amy

Wife to Will 11/3/95

Mother to Olivia Isabelle 9/18/03

A new addition due 12/05

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

Blueyedaze,

I think the emotional upheaval of losing a pregnancy is not exactly

the same as choking on food.

When you choke on food you at least have the opurtunity to die and

get out of your misery.

I think sma-ers who take the gamble of childbearing and win deserve

respect and support.

The problem is where do people like me and my friends (and I've met

far more that don't win at sma-mommy-roulette, than those as

fortunate as yourself)find the emotional peer support that we need?

Our society praises motherhood at any costs, and fails to support

people who are childless. This scenario is even more prevelent for

those of us that are shunned by the ablebodied world of pregnancy

loss, and then again by our disabled peers who would rather

minimalize the real risks and losses involved with pregnancy with a

disability, than be real and support all sides of this issue.

Do any of you want to show me a support group and or web site that

supports women with disabilities and pregnancy loss?

Obviously support for such a thing isn't happening around here.

>

> In a message dated 5/4/2005 7:35:00 PM Eastern Standard Time,

> charmedcripchic@y... writes:

>

> God bless those of you with sma that have managed motherhood, but

my

> personal advice is to stay away from that risk to your lives.

Pregnancy is

> difficult enough for able bodied women,

>

>

> LOL We share a similar opinion! Then again, what's life without

risk? I

> could choke on my dinner this evening a bam! I'm a goner. Maybe I

shouldn't

> eat.

>

> Amy

> Wife to Will 11/3/95

> Mother to Olivia Isabelle 9/18/03

> A new addition due 12/05

> http://www.babiesonline.com/babies/o/oliviathegreat/

>

>

>

>

[Guest guest]

By the way you won't die if you don't breed but you will die if you

don't eat.

Food for thought?

> >

> > In a message dated 5/4/2005 7:35:00 PM Eastern Standard Time,

> > charmedcripchic@y... writes:

> >

> > God bless those of you with sma that have managed motherhood,

but

> my

> > personal advice is to stay away from that risk to your lives.

> Pregnancy is

> > difficult enough for able bodied women,

> >

> >

> > LOL We share a similar opinion! Then again, what's life

without

> risk? I

> > could choke on my dinner this evening a bam! I'm a goner. Maybe I

> shouldn't

> > eat.

> >

> > Amy

> > Wife to Will 11/3/95

> > Mother to Olivia Isabelle 9/18/03

> > A new addition due 12/05

> > http://www.babiesonline.com/babies/o/oliviathegreat/

> >

> >

> >

> >

[Guest guest]

here are some resources on pregnancy for women with disabilities:

http://www.4woman.gov/wwd/index.htm

http://nursing.villanova.edu/womenwithdisabilities/preg/Pregnancy1.htm

http://www.bcm.edu/crowd/national_study/PREGNANC.htm

http://www.coombe.ie/midinfo/midwifery.html

http://dawn.thot.net/bibliography_wwd.html

[Guest guest]

whether you think I'm bitter or not, where is the support for sma

women dealing with reproductive issues and or pregnancy loss?

There are support groups for parents who loose children with sma but

not for sma women who loose thier own children. And for that matter

the involded partners either.

Like I said- no support....

Not even from our suposed peers...

I'm glad you don't 'sugar coat' to other women who want to have kids,

it's nice to hear. Great for you.

How bout a little bit of sensitivity to the rest of the world that

defines itself outside of mommyhood.

>

> In a message dated 5/4/2005 11:04:29 PM Eastern Standard Time,

> charmedcripchic@y... writes:

>

> By the way you won't die if you don't breed but you will die if

you

> don't eat.

>

>

> If I don't BREED? Last I checked I wasn't a dog.

>

> I forgot to address your comment about disabled women minimizing

the risks

> of pregnancy. I have actually advised a lot of the girls who have

asked me

> about my experiences NOT to take the risk. I think I am one of the

few who have

> been brutally honest about everything I went through to become a

mother. I

> don't see the point in sugar coating the facts.

>

> By the way I'm sure if you mean to come across this way, but you

seem like

> an incredibly bitter person.

>

> Amy

> Wife to Will 11/3/95

> Mother to Olivia Isabelle 9/18/03

> A new addition due 12/05

> http://www.babiesonline.com/babies/o/oliviathegreat/

>

>

>

>

[Guest guest]

>I'm glad you don't 'sugar coat' to other women who want to have kids,

it's nice to hear. Great for you.

How bout a little bit of sensitivity to the rest of the world that

defines itself outside of mommyhood.<

YIKES! Talk about bitter.

Jodi & Maggie May

Accessible Travel

Disability Travel Specialist and Service Dog

" Making a way for YOU to get away! "

[Guest guest]

Nice links but these are resouces for pregnancy not pregnacy loss.

As I said where is the support for sma partners and pregnancy loss?

I appreciate your willingness to help, but the sites are geared

towards

pregnacy and parenthood not support for the greif of pregnancy loss.

It's apples and oranges.

Once again I have nothing against the moms.

I happen to be a mother myself. The only difference is your children

live on earth with you and mine wait or me in heaven.

I wouldn't treat any of you the way you're treating me if the

situation

were reversed.

Some of you have a lack of compassion for those of us dealing with

the

loss of a child.

> here are some resources on pregnancy for women with disabilities:

>

> http://www.4woman.gov/wwd/index.htm

> http://nursing.villanova.edu/womenwithdisabiliti

es/preg/Pregnancy1.htm

> http://www.bcm.edu/crowd/national_study/PREGNANC.htm

> http://www.coombe.ie/midinfo/midwifery.html

> http://dawn.thot.net/bibliography_wwd.html

[Guest guest]

charmedcripchic wrote:

>I think the emotional upheaval of losing a pregnancy is not exactly

>the same as choking on food.

>

>

Her point was that a person can die from a number of reasons, choking

and pregnancy being two of them.

>I think sma-ers who take the gamble of childbearing and win deserve

>respect and support.

>

>

Well, I'm not feeling much respect from you here. Especially when my

childbearing is being compared to Roulette.

>The problem is where do people like me and my friends (and I've met

>far more that don't win at sma-mommy-roulette, than those as

>fortunate as yourself)find the emotional peer support that we need?

>

>

I've lost one child myself. Here is my website dedicated to baby Echo:

http://www.isoc.net/brokeninside/nekrosys/echo.htm

Here is my webpage that lists in detail all the trauma I went through

giving birth to my first daughter:

http://www.isoc.net/brokeninside/nekrosys/epistles.htm

No sugar-coating here.

>Our society praises motherhood at any costs, and fails to support

>people who are childless.

>

Society is also very prejudiced against woman with disabilties being

mothers. Read some of my " fun " experiences here:

http://www.isoc.net/brokeninside/nekrosys/pregnancy.htm

I'm getting really tired of people telling me what risks I should or

should not have taken. What happened to the right to choose to *have* a

baby?

Jenn

[Guest guest]

charmedcripchic wrote:

>I think the emotional upheaval of losing a pregnancy is not exactly

>the same as choking on food.

>

>

Her point was that a person can die from a number of reasons, choking

and pregnancy being two of them.

>I think sma-ers who take the gamble of childbearing and win deserve

>respect and support.

>

>

Well, I'm not feeling much respect from you here. Especially when my

childbearing is being compared to Roulette.

>The problem is where do people like me and my friends (and I've met

>far more that don't win at sma-mommy-roulette, than those as

>fortunate as yourself)find the emotional peer support that we need?

>

>

I've lost one child myself. Here is my website dedicated to baby Echo:

http://www.isoc.net/brokeninside/nekrosys/echo.htm

Here is my webpage that lists in detail all the trauma I went through

giving birth to my first daughter:

http://www.isoc.net/brokeninside/nekrosys/epistles.htm

No sugar-coating here.

>Our society praises motherhood at any costs, and fails to support

>people who are childless.

>

Society is also very prejudiced against woman with disabilties being

mothers. Read some of my " fun " experiences here:

http://www.isoc.net/brokeninside/nekrosys/pregnancy.htm

I'm getting really tired of people telling me what risks I should or

should not have taken. What happened to the right to choose to *have* a

baby?

Jenn

[Guest guest]

thank you so much Jenn!

I realy apprciate what you shared here.

>

> >I think the emotional upheaval of losing a pregnancy is not

exactly

> >the same as choking on food.

> >

> >

> Her point was that a person can die from a number of reasons,

choking

> and pregnancy being two of them.

>

> >I think sma-ers who take the gamble of childbearing and win

deserve

> >respect and support.

> >

> >

> Well, I'm not feeling much respect from you here. Especially when

my

> childbearing is being compared to Roulette.

>

> >The problem is where do people like me and my friends (and I've

met

> >far more that don't win at sma-mommy-roulette, than those as

> >fortunate as yourself)find the emotional peer support that we need?

> >

> >

> I've lost one child myself. Here is my website dedicated to baby

Echo:

> http://www.isoc.net/brokeninside/nekrosys/echo.htm

>

> Here is my webpage that lists in detail all the trauma I went

through

> giving birth to my first daughter:

> http://www.isoc.net/brokeninside/nekrosys/epistles.htm

>

> No sugar-coating here.

>

> >Our society praises motherhood at any costs, and fails to support

> >people who are childless.

> >

> Society is also very prejudiced against woman with disabilties

being

> mothers. Read some of my " fun " experiences here:

> http://www.isoc.net/brokeninside/nekrosys/pregnancy.htm

>

> I'm getting really tired of people telling me what risks I should

or

> should not have taken. What happened to the right to choose to

*have* a

> baby?

>

> Jenn

[Guest guest]

i was hopeful that if you dug in and contacted the web site authors that

you'd find other people with disabilities out there with your

experiences. i fully recognize the apples and oranges of it. there is

also an organization called 'through the looking glass' that specializes in

parenting with disabilities. i'm sure that they have clients who've

experienced miscarriages and infant losses, as well as lack of support from

family, friends, health care providers and the community at large. you may

want to contact them and ask if their researchers, advocates or counselors

can direct you toward a resource. i like that most of them have

disabilities themselves, and know a few of them.

http://lookingglass.org/index.php let me know if they're of help. if not,

i have other places to check.

i, too, don't have children and have gone through many levels of grief

about this. at present, i'm happy in a relationship and am not being

tugged at by maternal yearnings, though, know them well. i've never

experienced a miscarriage, but deeply dread that possibility or having to

face terminating a pregnancy. i wrote a short story about this that was

published in a book listed in the links i sent. the book is called 'bigger

than the sky.' i can send you the copy of my story if you'd

like. anthologies have included disabled women's perspectives on not

having children. i have gotten a lot of support from other disabled women

who can't/don't have children. it hasn't mattered to me if the issues are

sma-specific. i've also been well-supported by childless non-disabled women.

i'm sorry you haven't received the support you need. feel free to contact

me on or off-list.

alana

At 10:10 PM 5/4/2005, you wrote:

>Nice links but these are resouces for pregnancy not pregnacy loss.

>

>As I said where is the support for sma partners and pregnancy loss?

[Guest guest]

In a message dated 5/6/2005 5:17:19 PM Eastern Standard Time,

charmedcripchic@... writes:

What really bothers me are insensitive remarks from other sma women.

I have also noticed some women in wheelchairs that have children can

be very cruel and show elitist behavior towards those of us that

don't.

Have you encountered that on this list?

Amy

Wife to Will 11/3/95

Mother to Olivia Isabelle 9/18/03

A new addition due 12/05

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

All I can say is WOW, Alana. That was so heart felt and well written.

Amy

Wife to Will 11/3/95

Mother to Olivia Isabelle 9/18/03

A new addition due 12/05

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

thank you Alana, I'd be very interested in reading the articles you

mentioned.

Through all of this I have found some supportive writings through

the 'child free' and 'childless and infertility' based groups.

The problems of non accessible meetings still happens however.

The biggest problems I've found are inaccessibility but also what

feels like a huge culture gap between a world accepting of disability

and a world that dosen't want us included in it.

What really bothers me are insensitive remarks from other sma women.

I have also noticed some women in wheelchairs that have children can

be very cruel and show elitist behavior towards those of us that

don't.

" Alana R. Theriault " <alrt@e...> wrote:

> i was hopeful that if you dug in and contacted the web site authors

that

> you'd find other people with disabilities out there with your

> experiences. i fully recognize the apples and oranges of it.

there is

> also an organization called 'through the looking glass' that

specializes in

> parenting with disabilities. i'm sure that they have clients

who've

> experienced miscarriages and infant losses, as well as lack of

support from

> family, friends, health care providers and the community at large.

you may

> want to contact them and ask if their researchers, advocates or

counselors

> can direct you toward a resource. i like that most of them have

> disabilities themselves, and know a few of them.

> http://lookingglass.org/index.php let me know if they're of help.

if not,

> i have other places to check.

>

> i, too, don't have children and have gone through many levels of

grief

> about this. at present, i'm happy in a relationship and am not

being

> tugged at by maternal yearnings, though, know them well. i've

never

> experienced a miscarriage, but deeply dread that possibility or

having to

> face terminating a pregnancy. i wrote a short story about this

that was

> published in a book listed in the links i sent. the book is

called 'bigger

> than the sky.' i can send you the copy of my story if you'd

> like. anthologies have included disabled women's perspectives on

not

> having children. i have gotten a lot of support from other

disabled women

> who can't/don't have children. it hasn't mattered to me if the

issues are

> sma-specific. i've also been well-supported by childless non-

disabled women.

>

> i'm sorry you haven't received the support you need. feel free to

contact

> me on or off-list.

>

> alana

>

>

> At 10:10 PM 5/4/2005, you wrote:

> >Nice links but these are resouces for pregnancy not pregnacy loss.

> >

> >As I said where is the support for sma partners and pregnancy loss?

[Guest guest]

this is the short piece that was published in 'bigger than the sky'. it's

not my best writing and was 8 years ago, but it's an important

perspective. yes, the culture gap is wide, especially in the health care

profession because we are still mostly regarded as medical problems instead

of as women and men. reproductive health seems especially difficult. i'm

trying to get an urgent gyn appointment by tuesday, but need an hour time

slot that they don't yet have. i may have grin and bare it and go to a

women's clinic that i don't know just because i need more time. grrr. i

haven't experienced insensitive remarks from other people/women with

disabilities about childbearing or not with a disability. i have

encountered biases about my disinterest in marriage, but i think that's

more of a religious and cultural values issue with only a smattering of

disability in there.

Until Now

I'm thirty years old and this is the 1st time I've had to wonder if I am

indeed pregnant. I keep counting the days on my calendar since I last

bled...43...44...45...46...and I can't help but notice how tender my

breasts are. My 45-pound, scoliosed body has never bled regularly for more

than 6 months at a time; not a dependable measure. I'm exhausted. I'm

sleepy. I'm emotional. I'm all of those pre-menstrual things without the

menstrual part of the deal coming forth. I'm on the unforgiving mini-pill

and I did the unforgivable. I missed a day and had sex. My fragile body

and I negotiated with my Love to learn how close we can be. We learned a

lot. He says he has a low sperm count. I say the women in my family are

baby machines. Am I a baby machine, too? I need help to care for myself

in even the smallest ways. Can I care for someone else? Is this little

body of mine meant to create another little body? Joy leaps into my throat

and chokes there as I cram it back down to where I hope a baby is not. My

thoughts crash into my aching spine which doesn't support my own weight,

and could not bear the weight of another, no matter how small. And then I

wonder, " Is there a way? " And I picture holding a small child between me

and my Love, us all napping with dreams of our future. Would I be a good

mother? Could I even hold my baby with my thin arms in a way so it feels

safe and completely loved? As a ventilator pushes air deep into my lungs,

I wonder if I could even breathe with a baby growing inside me. I can

hardly breathe after eating half of a burrito. Could I withstand months of

bedrest, knowing that each day I would lose my reach, a wiggle of a finger,

the turn of my head, a shoulder shrugging. These are the small, precious

things my body can now do. Is it a fair trade, these things for a precious

life? Will that life be granted my own physical limitations as a genetic

bonus prize? If I have a child, will I be destined to live on public

assistance? Will I have to quit my job and struggle to get us each up in

the morning? Will my Love always be gone to make money and too tired to be

my Love? If he wants to stay home and I want to work, will I be able to

sit upright long enough to enjoy all the parts of my life? All of these

questions have been easy to answer until now.

alana

[Guest guest]

In a message dated 5/6/2005 9:08:55 PM Eastern Standard Time,

charmedcripchic@... writes:

I know of many sma women with children other than just at this site.

If any of them here are being insensitive to this issue and or an

individual member their actions speak for themselves.

Way to dodge my question.

Amy

Wife to Will 11/3/95

Mother to Olivia Isabelle 9/18/03

A new addition due 12/05

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

I know of many sma women with children other than just at this site.

If any of them here are being insensitive to this issue and or an

individual member their actions speak for themselves.

>

> In a message dated 5/6/2005 5:17:19 PM Eastern Standard Time,

> charmedcripchic@y... writes:

>

> What really bothers me are insensitive remarks from other sma

women.

> I have also noticed some women in wheelchairs that have children

can

> be very cruel and show elitist behavior towards those of us that

> don't.

>

>

> Have you encountered that on this list?

>

> Amy

> Wife to Will 11/3/95

> Mother to Olivia Isabelle 9/18/03

> A new addition due 12/05

> http://www.babiesonline.com/babies/o/oliviathegreat/

>

>

>

>

[Guest guest]

Alana,

I just wanted to say that your writings are beautiful! Maybe I am

too emotional, but I could not hold back my tears. You have no idea

how many times I thought and felt those same things. Truly

beautiful expression of inner thoughts. Thank you for sharing it.

-na

> this is the short piece that was published in 'bigger than the

sky'. it's

> not my best writing and was 8 years ago, but it's an important

> perspective. yes, the culture gap is wide, especially in the

health care

> profession because we are still mostly regarded as medical

problems instead

> of as women and men. reproductive health seems especially

difficult. i'm

> trying to get an urgent gyn appointment by tuesday, but need an

hour time

> slot that they don't yet have. i may have grin and bare it and go

to a

> women's clinic that i don't know just because i need more time.

grrr. i

> haven't experienced insensitive remarks from other people/women

with

> disabilities about childbearing or not with a disability. i have

> encountered biases about my disinterest in marriage, but i think

that's

> more of a religious and cultural values issue with only a

smattering of

> disability in there.

>

> Until Now

>

> I'm thirty years old and this is the 1st time I've had to wonder

if I am

> indeed pregnant. I keep counting the days on my calendar since I

last

> bled...43...44...45...46...and I can't help but notice how tender

my

> breasts are. My 45-pound, scoliosed body has never bled regularly

for more

> than 6 months at a time; not a dependable measure. I'm

exhausted. I'm

> sleepy. I'm emotional. I'm all of those pre-menstrual things

without the

> menstrual part of the deal coming forth. I'm on the unforgiving

mini-pill

> and I did the unforgivable. I missed a day and had sex. My

fragile body

> and I negotiated with my Love to learn how close we can be. We

learned a

> lot. He says he has a low sperm count. I say the women in my

family are

> baby machines. Am I a baby machine, too? I need help to care for

myself

> in even the smallest ways. Can I care for someone else? Is this

little

> body of mine meant to create another little body? Joy leaps into

my throat

> and chokes there as I cram it back down to where I hope a baby is

not. My

> thoughts crash into my aching spine which doesn't support my own

weight,

> and could not bear the weight of another, no matter how small.

And then I

> wonder, " Is there a way? " And I picture holding a small child

between me

> and my Love, us all napping with dreams of our future. Would I be

a good

> mother? Could I even hold my baby with my thin arms in a way so

it feels

> safe and completely loved? As a ventilator pushes air deep into

my lungs,

> I wonder if I could even breathe with a baby growing inside me. I

can

> hardly breathe after eating half of a burrito. Could I withstand

months of

> bedrest, knowing that each day I would lose my reach, a wiggle of

a finger,

> the turn of my head, a shoulder shrugging. These are the small,

precious

> things my body can now do. Is it a fair trade, these things for a

precious

> life? Will that life be granted my own physical limitations as a

genetic

> bonus prize? If I have a child, will I be destined to live on

public

> assistance? Will I have to quit my job and struggle to get us

each up in

> the morning? Will my Love always be gone to make money and too

tired to be

> my Love? If he wants to stay home and I want to work, will I be

able to

> sit upright long enough to enjoy all the parts of my life? All of

these

> questions have been easy to answer until now.

>

> alana