Re: A terribly long vent email

[Guest guest]

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A terribly long vent email

I know most of us use this forum to ask questions/ get advice from our unique

peers, but tonight I just want to say Damn this is hard. And Good Job to all

the parents out there. Having a kiddo with moderate/severe PMG is an

adventure, a life changing, soul creating experience, absolutely.

But tonight as I clean the big-kid poop from beneath my fingernails, I just want

to say damn, this can be so tuff. And why the heck do I still not have gloves

in every room.

Josh is pretty much 100% potty trained, except when I can't be by his side (or

when, like tonight, I don't hear him). Then he has decided to take off his

diaper and do his business out of bed, out of diaper. Out of mind I guess he

figures, but then again I'm not sure since he can't communicate. Though

everyone can see he wants to badly.

I'm not looking for answers I'm just vent typing. I remind myself in creative

ways, not for one moment to allow Disability be the axis of 's or my life.

I spent years living that way and ultimately we both were miserable.

I decided a coupke weeks ago, after 13 months of being on anti-depressants to

cope with stress of our life and the loss of both my parents last year, Im ready

to experience this life naturally and fully. I often wonder how many it her

caregivers/Moms/Dads in my shoes out there use Antidepressants, Opiates or

others meds. Though I know for most it is a very private decision and I do not

expect anyone to talk about it.

Tonight, for the first time in many months, I joyfully cried my eyes out. Joshy

learned the difference between (concept of) hot and cold for the first time. It

was thrilling to watch him light up and reach for cold, reach for hot, not eat

hot, etc., on cue. Big happy-ugly cry!

It's these little magical moments where I'm reminded to kill the negative

thoughts and throw out all the stupid limits ever conceived against 's

potential.

I'm 100% convinced my Joshy is capable of so much more than Ive been lead to

hope for, so much more than what I've believed for all these years.

Mom to Tiger, 9

Sent from my iPad

[Guest guest]

I read this in a moment of self pity & it made me feel so much better my son has

pmg/crohns disease I just spent the day changing my 7yr old son washing bibs

because he used so many yesterday changing his shirt a million times taking him

home early because he was screaming because his legs were hurting from toe

walking & the noise was bothering him as I had a ton of pple staring at me like I

was the worst parent in the world for soothing this " bad kid " forcing meds down

him & then as I held him tonight I look at him like he's my hero but I am so

exhausted & wore out & when I read this I felt like other pple get it not exactly

the same situation but that feeling of it being really difficult I always feel

guilty feeling that I never even talk about it because I try 2just keep pushing

forward unclear of how functional my child will become but pushing for the best

outcome which is exhausting so thank u for this I don't feel alone.

Sent from my BlackBerry® by Boost Mobile

A terribly long vent email

I know most of us use this forum to ask questions/ get advice from our unique

peers, but tonight I just want to say Damn this is hard. And Good Job to all

the parents out there. Having a kiddo with moderate/severe PMG is an

adventure, a life changing, soul creating experience, absolutely.

But tonight as I clean the big-kid poop from beneath my fingernails, I just want

to say damn, this can be so tuff. And why the heck do I still not have gloves

in every room.

Josh is pretty much 100% potty trained, except when I can't be by his side (or

when, like tonight, I don't hear him). Then he has decided to take off his

diaper and do his business out of bed, out of diaper. Out of mind I guess he

figures, but then again I'm not sure since he can't communicate. Though

everyone can see he wants to badly.

I'm not looking for answers I'm just vent typing. I remind myself in creative

ways, not for one moment to allow Disability be the axis of 's or my life.

I spent years living that way and ultimately we both were miserable.

I decided a coupke weeks ago, after 13 months of being on anti-depressants to

cope with stress of our life and the loss of both my parents last year, Im ready

to experience this life naturally and fully. I often wonder how many it her

caregivers/Moms/Dads in my shoes out there use Antidepressants, Opiates or

others meds. Though I know for most it is a very private decision and I do not

expect anyone to talk about it.

Tonight, for the first time in many months, I joyfully cried my eyes out. Joshy

learned the difference between (concept of) hot and cold for the first time. It

was thrilling to watch him light up and reach for cold, reach for hot, not eat

hot, etc., on cue. Big happy-ugly cry!

It's these little magical moments where I'm reminded to kill the negative

thoughts and throw out all the stupid limits ever conceived against 's

potential.

I'm 100% convinced my Joshy is capable of so much more than Ive been lead to

hope for, so much more than what I've believed for all these years.

Mom to Tiger, 9

Sent from my iPad

[Guest guest]

Hi, This brings back memories of our time when Kym was little. They give you a

trying day and a glimmer of a smile can wipe away all the frustrations of the

day. Kym is now 18 and we still deal with the 'poop' but thankfully mostly on

the toilet. Sometimes we have an accident and oh boy the mess.......

I was on antidepressants for 3 years and it was a life saver for me and a

blessing our family.

Go slow with going off the tablets for you just might have a relaps and than you

will be back to square one.

Janice

A terribly long vent email

I know most of us use this forum to ask questions/ get advice from our unique

peers, but tonight I just want to say Damn this is hard. And Good Job to all the

parents out there. Having a kiddo with moderate/severe PMG is an adventure, a

life changing, soul creating experience, absolutely.

But tonight as I clean the big-kid poop from beneath my fingernails, I just

want to say damn, this can be so tuff. And why the heck do I still not have

gloves in every room.

Josh is pretty much 100% potty trained, except when I can't be by his side (or

when, like tonight, I don't hear him). Then he has decided to take off his

diaper and do his business out of bed, out of diaper. Out of mind I guess he

figures, but then again I'm not sure since he can't communicate. Though everyone

can see he wants to badly.

I'm not looking for answers I'm just vent typing. I remind myself in creative

ways, not for one moment to allow Disability be the axis of 's or my life.

I spent years living that way and ultimately we both were miserable.

I decided a coupke weeks ago, after 13 months of being on anti-depressants to

cope with stress of our life and the loss of both my parents last year, Im ready

to experience this life naturally and fully. I often wonder how many it her

caregivers/Moms/Dads in my shoes out there use Antidepressants, Opiates or

others meds. Though I know for most it is a very private decision and I do not

expect anyone to talk about it.

Tonight, for the first time in many months, I joyfully cried my eyes out.

Joshy learned the difference between (concept of) hot and cold for the first

time. It was thrilling to watch him light up and reach for cold, reach for hot,

not eat hot, etc., on cue. Big happy-ugly cry!

It's these little magical moments where I'm reminded to kill the negative

thoughts and throw out all the stupid limits ever conceived against 's

potential.

I'm 100% convinced my Joshy is capable of so much more than Ive been lead to

hope for, so much more than what I've believed for all these years.

Mom to Tiger, 9

Sent from my iPad

[Guest guest]

Hello Amazing Families,

 

I joined this mailing list when Teddy was an infant, and he is now 12 years

old.  Talking to other families who understood what we were going through was

probably the most important support I received, and I still check in from time

to time.  I just happened to read your post, , and wanted say that you

are doing an amazing job with your son.  Our kids demand a lot of time and

energy for their basic needs like feeding, dressing -- and pooping, of course! 

On top of that, we have to be cheerleaders encouraging our kids to strive for

every little accomplishment, even when we have secret doubts ourselves that they

will achieve their goals.  And then, we need to have the tenderness and

compassion to hold them and comfort them when they are sick, or tired, or just

can't communicate what it is that is bothering them.  You are doing all of this,

as well as going through the " regular " trials of life including the recent loss

of both your parents. 

And, from what I can read between the lines of your post, you are still

smiling.  That is an accomplishment.  I have a friend who asks me, when we talk,

" So what are you doing for yourself today? "   I hope each day you can do

something for yourself, even if it is just reflecting on your strength or

brushing your teeth for an extra minute instead of rushing it!  I also agree

with the mom who wrote that you should not rush to stop your medication; it can

take a long time to wean yourself off antidepressants.  I have taken Zoloft off

and on, usually for about a year to two years at a time, for the past twelve

years.  It doesn't mean you can't " handle " your situation; it means you are

taking steps to keep yourself and your family healthy.  I wish you and your son

all the best.

 

Meg and Teddy

[Guest guest]

I am hmubled and proud of each and every parent/caregiver out there that LOVE

their family members with differing abilities and needs from what the rest of

the world calls " normal " !!!  You are all HEROS!  Much LVOE, Grandma to Dakota

and Madie

Subject: Re: A terribly long vent email

To: polymicrogyria

Date: Thursday, August 11, 2011, 2:29 AM

I read this in a moment of self pity & it made me feel so much better my son has

pmg/crohns disease I just spent the day changing my 7yr old son washing bibs

because he used so many yesterday changing his shirt a million times taking him

home early because he was screaming because his legs were hurting from toe

walking & the noise was bothering him as I had a ton of pple staring at me like I

was the worst parent in the world for soothing this " bad kid " forcing meds down

him & then as I held him tonight I look at him like he's my hero but I am so

exhausted & wore out & when I read this I felt like other pple get it not exactly

the same situation but that feeling of it being really difficult I always feel

guilty feeling that I never even talk about it because I try 2just keep pushing

forward unclear of how functional my child will become but pushing for the best

outcome which is exhausting so thank u for this I don't feel alone.

Sent from my BlackBerry® by Boost Mobile

A terribly long vent email

I know most of us use this forum to ask questions/ get advice from our unique

peers, but tonight I just want to say Damn this is hard.  And Good Job to all

the parents out there.     Having a kiddo with moderate/severe PMG is an

adventure, a life changing, soul creating experience, absolutely. 

But tonight as I clean the big-kid poop from beneath my fingernails, I just want

to say damn, this can be so tuff.    And why the heck do I still not have gloves

in every room.

 

Josh is pretty much 100% potty trained, except when I can't be by his side (or

when, like tonight, I don't hear him).  Then he has decided to take off his

diaper and do his business out of bed, out of diaper.  Out of mind I guess he

figures, but then again I'm not sure since he can't communicate.  Though

everyone can see he wants to badly. 

I'm not looking for answers I'm just vent typing.  I remind myself in creative

ways, not for one moment to allow Disability be the axis of 's or my

life.  I spent years living that way and ultimately we both were miserable. 

 

I decided a coupke weeks ago, after 13 months of being on anti-depressants to

cope with stress of our life and the loss of both my parents last year, Im ready

to experience this life naturally and fully.   I often wonder how many it her

caregivers/Moms/Dads in my shoes out there use Antidepressants, Opiates or

others meds.  Though I know for most it is a very private decision and I do not

expect anyone to talk about it. 

Tonight, for the first time in many months, I joyfully cried my eyes out.  Joshy

learned the difference between (concept of) hot and cold for the first time.  It

was thrilling to watch him light up and reach for cold, reach for hot, not eat

hot, etc., on cue.  Big happy-ugly cry!

It's these little magical moments where I'm reminded to kill the negative

thoughts and throw out all the stupid limits ever conceived against 's

potential.

I'm 100% convinced my Joshy is capable of so much more than Ive been lead to

hope for, so much more than what I've believed for all these years. 

                 

Mom to Tiger, 9

Sent from my iPad