Wednesday, June 2, 2010

Strength in numbers - Update

A couple of months ago, I told you that two twin mommies that I knew had had one of their twins diagnosed with CP. In that post, I asked for your help. I wanted to know what you would have wanted back in the early days after diagnosis. I wanted to reach out and help these moms, but I didn't want to overwhelm them either.

Well. In the weeks since then, I have connected with these Moms.

Initially we communicated through Facebook. In order to provide support without overwhelming them, I posted many photos and videos of Ben on my Facebook page. Basically providing them a way to look and find out about Ben, without having to ask questions.

CP awareness day was during that time. I posted facts and links about CP on my Facebook page over that weekend, in an effort to not just provide support to them, but to educate all those around me (and around Ben).

And they ate this information up. They devoured it. They shared it with their husbands and their families. They posted comments and asked questions.

Then they came out to a Mom's Night Out (sponsored by our Moms of Multiples Group) and they stayed late and asked questions. And we connected. We cried and we hugged.

After that, we had playdates. And shared even more information. About local programs and service providers. And our kids played. I even loaned out a few toys that were helped Ben to sit in the early days.

It's truly been amazing. The connection between us was instant. And forever. We have a bond that is unique and special.

I am thrilled that Ben will know other kids in a similar situation. With CP. With a typically-developing twin.

I am thrilled that Daniel will know other kids in a similar situation. Typically-developing. With a twin with CP.

But I am also happy for me. I needed this. At this stage, they can't really answer any of my questions about botox or serial casting. But that's OK. That's what I have you guys (and good 'ole Google for). But they understand what it's like to be in MY shoes. They get it. And that feels good.


  1. That's fantastic...for ALL of you, mommies and kiddos. You've done a really great thing for these people.

  2. What a special person you are, to have reached out to these families! That is so awesome!

    We haven't officially "come out" to everyone. If people ask about what is going on with the boys (family and a few close friends), I will offer abreviated descriptions of what is going on, but haven't labeled it CP. Not sure why.

    I'll get there, though.

    You are my inspiration...

  3. Yeah, CaryAnne! Way to go, girl! Those women will undoubtedly remember you for the rest of their lives....

  4. Gosh, I am kinda jealous. Real life friends who get you? That is indeed something to be grateful for. I do love me some bloggy companionship, though. I'd be lost without it. I find Stacie's comment touching - I actually have friends who live in my own city who don't know about Hannah's CP, because I never could figure out how to say that in an email to fifty people, the way I would periodically just send out updates and pictures.

  5. Hi ladies. Thanks so much for commenting. But please don't give me too much credit. I am an incredibly social human being. And I crave connections with people. So reaching out to these women certainly wasn't a "selfless" thing to do.

    Stacie and GingerB - That's interesting to me that not all your friends / family know. For me, I absolutely had to have everyone know within the first week of diagnosis...and actually did a Note on Facebook to tell the world about what was going on with Ben. I just couldn't handle explaining his "condition" over and over and over so decided to get it over with in one go...kind of like tearing off a band-aid.

  6. 人生最大的榮耀,不是永遠不敗,而是屢仆屢戰 ..................................................

  7. So happy to read this.

    I'm like you--bandaid all the way--easiest way to deal with a diagnosis in my opinion.

    We're going to a park day in two weeks for kids with special needs. Maybe I'll meet a RL friend there?!?

  8. thats great news. I also have a lot of blogging friends and on line "support" forums but there is nothing like sitting face to face with someone who totally gets where you are. soooo happy you found that!!!

  9. Yea for you!!
    There's nothing like having a face-to-face converstion with another Mama that gets it.
    Hot cup of coffee in hand, giggling one moment, deep in conversation the next moment. I love those times!


  10. I am so glad that you have been able to find support and friendship in these moms. It's truly invaluable.