I keep attempting to join a DS support group - really it's an online message board - and although I've posted a handful of times, I just can't seem to feel at home there. I keep trying because that's what I'm told I need to do - join some kind of support group. But honestly, every time I go there and start skimming posts, it just get me down. I read about a lot of dual diagnoses - DS + autism . . . DS + epilepsy . . . DS + leukemia . . . plus some pretty severe developmental delays . . . and the list goes on. I realize that some of that may be our reality with Finn at some point down the line, but it's not now. And I almost feel guilty . . . guilty that Finn is overall pretty healthy, that he's generally on track developmentally . . . in other words, guilty that he, for now anyway, is so mildly affected by DS and guilty that I feel glad about that! (How messed up is that?!)
And I can't help but wonder if my discomfort with the whole support group thing is just another sign that I'm in denial . . . ???
On another note, I am finding that I am losing the need to blurt out to everyone we come into contact with that Finn has DS. I took the girls and Finn to the park this morning and met a friend of a friend there and she was admiring the baby and I never said a word about his having DS. It crossed my mind to wonder if she could tell by looking at him . . . or maybe she just already knows by virtue of our having a mutual friend, I don't know. All I know is that my skin wasn't crawling with the need to unload our whole ordeal on her. I guess that's progress.
Adieu
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After more than two years and 555 posts (556 counting this one!), I'm
saying goodbye to Adventures in Motherhood. I'm ready for a change, and
I've started ...
13 years ago
9 comments:
I still haven't really joined a support group either...and my daughter is 1.5. I read a message board every once in a blue moon and we are on the email list for a local support group, but on the whole it's hard for me to find the time when we are just busy living life and my kid is just a kid with no big issues so far.
Glad to hear Finn is doing so well and you are more at peace.
Yes, it is progress!
You have to know that all message boards have a lot of types of people. If you joina group, you learn soon enough who "works", and who is content to let junior be.
But if you are reading a few on-line blogs, that's probably just as good.
Ricki is also dual -diagnosis (ADHD), and the ADHD causes most of our problems, but she's great anyway!
Finn is a beautiful, smart and healthy baby and you have the right to feel happy about it, to live in the now and to enjoy every day with him to the fullest. Regarding the support groups, I think you need to do what works for you, whatever makes you feel comfortable. I’m glad you had a nice experience in the park this morning, keep in mind that Finnian is first and foremost a baby like any other baby and he is not defined by Ds. Lisa, I think you are starting to make friends with Finn’s Ds diagnosis, you are making peace with it.
I think the "support" part is more important than the "group" part of the equation - and that you have in full - from your family, your friends, and people who read this blog. Isn't that part of what you're accomplishing with this blog - processing your thoughts and meeting other moms going through some of the same things (Hi, Laurie!). I don't think you should force yourself to do something that doesn't feel right. Besides, the group will still be there later if you change your mind...
I agree with everyone. I think that if in the future you find that you do need a support group, at least it's there.
I havent done anything like that either (IRL). I keep putting it off bc I just dont think it is something that Im into right now. At least it's an option tho, kwim?
You are not in denial. And, message boards and support groups are good for some, but not everyone. I do participate in message boards, but am leery of our local support group (political junk and I cannot identify with a great deal of their participants).
Finn is beautiful. We have Elliot (two with T21), Isaac (just turned one) and Nora (6). I am consistently out in public with the boys and get a lot of "are they twins?" People start to stare at Elliot and I always blurt it out, "Well, no they are not twins, but Elliot has special needs and was two months premature...bla, bla." I too wonder why I feel the need to clarify.
Anyway, really just popped on to tell you that, again, FINN IS BEAUTIFUL!
Gosh, there's lots of groups. I bet you'll find one that fits you. There's one at BabyCenter.com, IVillage.com, Downsyn.com, Trisomy21Online.com. So many of them...and there are really wonderful people at each place.
I hope this helps? I'm a big believer in support. You can join my group any day! We're now a group of 2!
xo
My first day over and I'm enjoying the "browse." Gosh, you sound familiar. I've absolutely been there. Not having family support is what drove me to find some online, but I can see it no being for everyone. The goal is to get what you need, regardless of where it comes from. I also think that if I had a sibling for my daughter, I wouldn't seek so much outside influence. I just have this fear that I'm screwing this whole "mama thing" up. Ah, but you're a pro!
This journey, while so new to you, is truly an interesting and amazing journey, which is similar, but at times ~ oh, so different, for each of us........I found great comfort online when I was pregnant [but at that time there really were not many online support groups] but I do think that if you visit a few, you might get a feel for some kindred souls that are traveling this path that is less traveld [that your average bear!] and connect. I find that my blog visits and connections are the ones that I need. I love to read stories and see pictures. I do visit an online community, but mostly just to lurk.
I love your son's name.....and I look forward to watching him grow and blossom on your blog.
Savor the moments, know that each day brings about new thoughts and perspectives.....
Do you mind if I add your blog to my blogroll? Let me know.
Peace and love, Tara Marie, Momma to Emma Sage 7 ~T21 and her siblings
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