Connecting with other families of kids with same diagnosis?

[snuggly mama]

So, in my other thread I mentioned that I had finally found a family whose child has the same very rare diagnosis as dd. While there's a part of me that is not entirely convinced that dd has this condition (see my other thread), there are enough real similarities that finding this family has been an amazing and overwhelming experience.

We've never had the chance to meet or even talk with anyone else who has both the vision loss and the kidney disease issues. Over the last couple of days, I've exchanged a lot of emails and a couple of photos with the dad. Is it weird to feel so connected to this family? How do you set boundaries on what you share and ask, when what I want to know is EVERYTHING? And if it turns out dd does NOT have this condition, will it be too weird that we've connected?

I've found lots of support around dd's separate issues -- I'm very connected to a group of moms whose children are blind/visually impaired, and we attend a wonderful camp for kids with kidney disease, so it's not like I'm lacking for support. It's just . . . this is so different.

I know this probably sounds rambly and emotional, but that's very much how I'm feeling right now. I mean, I just never expected to find someone, let alone another family with a girl dd's age, and one who has the same hair as her!

Do you connect with other families who have similar diagnosis? Why or why not?

[lactationlady]

I am part of a yahoo group with parents of children with Kabuki syndrome, which is pretty rare - estimates of 400-600 people world wide. While it has been helpful, I really didn't feel what you were talking about until one of the parents posted a video clip of her 6yo daughter. Seeing her daughter had a major impact on me. She looks so much like my dd, even more than my other children do. Her face, her eyes, her hair, it was amazing. It was like seeing into Rebekah's future.

I think it is natural to seek a connection with someone who comes from a similar place when we often feel so alone when no one else we know has kids like ours. It is so amazing to feel understood. I think that even if your dd turns out to not have the exact same condition, it will not be weird that you have made a connection with this family. It sounds like their conditions are so similar that you will always have that in common, no matter what name it goes by.

[~meribeth~]

My daughter has Cornelia de Lange Syndrome. I haven't found anyone local who's child has the same diagnosis. I did become a member of the CdLS Foundation and they have been a great resource for us. We attended their Awareness Day picnic in CT last spring and met a bunch of other families from the Northeast(we are in upstate NY). I also found a support group on Yahoo. And surprisingly enough, I've met a bunch of other moms of CdLS kids(and one dad) on Myspace.

[2boyzmama]

Well, we just got our diagnosis less than a week ago, so this is all kinda new to me, and overwhelming. But, before we even had the official diagnosis, I was paired up with a parent mentor through our local EIS. EIS tries to pair families with kids who have similar issues, and it turns out they were right on because our two little boys have the same syndrome! So I've known another little boy (a few years older) with this syndrome for a few months.

Now that we know for sure what he has, I've spent the entire weekend researching national foundations, organizations, research studies, even other Children's Hospitals. I've sent many emails and requests for information. So I guess I'm definitely interested in linking up with other groups

As far as what to talk about...it seems to me that anything medical is "fair game", after all, that's what the groups are for, right? And my parent mentor and I have discussed other family issues as well, even marital issues, because she's BTDT and I'm just starting to experience it all. It's nice to have a friend to lean on from time to time. I think a "virtual" friend might be even better because there's a bit of anonymity there.

[snuggly mama]

I do think it's helpful for me, and I'm going to try and let the other family set the pace a bit in terms of ongoing communications. They seem to want to know a lot about dd, too -- especially the transplant stuff -- so it makes me feel more relaxed about asking them questions.

And, today, dd said, "Mama, did you really find another little girl like me? You know, with my syndrome?" I said yes, and asked what she thought about that. She thought it was pretty special, and I thought it was a good opportunity to talk about how dd is special just by being herself, not just because she's got some rare diagnosis.

She also said to dh and I last night, when I was sharing everything with him, "STOP talking about diagnosis all the time. I DON'T LIKE THAT!"

It was a good reminder for me to learn how to keep some things to myself, to not always talk about dd in front of her or where she can listen in. I sometimes forget just how much they can pick up on!