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My support group experience

Jane

Digital opinion leader
Twilight zone?
This week I was invited to participate in a support group for moms with children with special needs. The woman who started the group is Jesse's counselor and mom to a child with neuro issues. There are 12 women who have been meeting once a month since April, but I haven't been able to attend yet.

WELL It was SO weird! Because I was new, I had to tell my "story"... My boys have CF....CF is....yada yada yada.

<b>I got blank stares.</b>

The facilitator asks me to tell about our daily routines.

<b>Blank stares.</b>

Then one question... So your boys go to school?

Then... So your boys look normal? And play sports? No brain problems?

<b>Blank stares.</b>

I realized later that EVERYONE else there had a child with neurological problems. Hugely disabled, constant nursing care, etc. All of them are together in the same "Holland" and I've never been there, I don't even know where it is. To them, I was an alien.

<b>It was so weird</b> to get a perspective from the other side. I'm not sure I'll go back because I didn't have much to add to the conversation. But it was interesting.

One cool thing that I got from the group was an article that one mom had written for a newsletter. It is about the "sister sorority" of mom's of children with special needs. It is very well done and very moving. Its too long to put here, but if anyone wants a copy, please PM me and I'll send it out.
 

JazzysMom

New member
Jane, Jane, Jane...............A realty check of sorts I imagine this was for you. They all probably gave you the "feeling" of why the hell am I here? CF is a tricky illness to get support for in the "general chronic illness community" because as a rule we dont look sick, many of us have normal lives with normal activities. Anyone outside of the CF community would look at you or I or anyone looking for support like Aliens because of the Unique difficulties CF present. I am sorry that this didnt work out like you were hoping, but you still have us! **HUGS**
 

Jane

Digital opinion leader
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

but you still have us! </end quote></div>

That's JUST what I kept thinking!
Thanks
 

Jane

Digital opinion leader
I want to make it clear that these woman didn't treat me badly and I wasn't being critical of their situations. Its just that even though we all had children with "issues", we were in totally diffferent places.
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jane</b></i>


One cool thing that I got from the group was an article that one mom had written for a newsletter. .</end quote></div>


WHAT WAS THE NEWSLETTER FOR?
 

Jane

Digital opinion leader
Thanks Karen, I've never thought it like that. Although I know it works both ways, giving and receiving. Maybe I'll give the group a second try.

Maybe I'll look into getting a blog. Up to now I haven't thought about doing one although I enjoy everyone else's.

That article will be the first thing I put.
 

Jane

Digital opinion leader
<div class="FTQUOTE"><begin quote><i>



WHAT WAS THE NEWSLETTER FOR?</end quote></div>

I'm not sure, but it seemed to be a local newsletter for families with children with neuro problems.
 

Jane

Digital opinion leader
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>karenb</b></i>


I say post it, what about in a blog? I would like to read it.

.</end quote></div>

Ok, I did it, I have BLOGGED. Oh the pressure of it all.<img src="i/expressions/face-icon-small-confused.gif" border="0">


For those who asked, the article appears in my blog.
 

Momofsix

New member
Jane
My name is Laura. I was trying comment on your blog I read about sister sorority It was beautiful and made me cry. I have a son with neurological problems non verbal very abusive at times and soon to have 2 more sons with adhd and one with CF, anyway I get <b>WHy</b> do you want these kids like this ! Why not! It is a challenge and rough at times but <b>so rewarding </b>to see them overcome obstacles! My reply... Want to enjoy your life and appreciate it watch LIFE through the eyes of a child with special needs! Thanks for sharing !
 

anonymous

New member
Thanks sooo much for the article. Beautiful!!!
My daughter is severely disabled and she has a very rare syndrome with mental retardation, nonverbal, not toilet trained, seizure disorder. Lauren is a blessing to our entire family and has taught us sooo much, love,patience, acceptance, etc.
Oh I forgot to add she also has CF.
Take Care,
Joan
 

Jane

Digital opinion leader
Hi Laura,
You are an amazing woman. I read your post today from school, but I tend to not comment during school because I get too emotional. Brandon is a lucky little boys to have someone so caring watching out for his needs.

Hi Joan,
I have only attended the support group once so I am ignorant to all of the terminology regarding neurological diagnoses. The moms who spoke said the names of the conditions but I wasn't able to understand them all. Next time I'll try to get more information an dmaybe find out where the newsletter comes from. You moms have so much to deal with on top of the CF, wow.

Thanks for the comments
 

Scarlett81

New member
hey Jane-
Well I'm not in the same boat as you, but I think of you often! I imagnie if it was me in that group the other night-and I don't mean this in a bad way!!-but I might have walked out thinking, wow I'm lucky in many ways. I hope that gives you a little comfort.

To Laura-Hi, I just wanted to comment, I saw your postings the other night and didn't get to say hello but you sound like an amazing woman and have my vote for first female president! LOL<img src="i/expressions/heart.gif" border="0"> Welcome! I look forward to learning more about you and your unique situation. My mom adopted me when I was 6, and had been diagnosed with cf from the age of 1. I'm not a mom in your shoes, but if you ever have any questions about what it's like to live with cf and the adoption connection please feel free to personal message me anytime. I don't know if I can help, but I can tell you my experience at least. Best to you.

And best to you too Jane-I always think of you.
 
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