Wednesday, March 24, 2010

Strength in numbers

Until a month ago, I did not know one single person (in real life) that had a child with CP. Not one. Just a month later, two moms I know have had one of their twins diagnosed with CP. This kind of blows me away.

Both of these women are moms of twins that I met through our local Moms of Multiples club. Until now, I was the only mom there that had a disabled child. And now all of the sudden, there are 3 of us.

I have reached out to these moms. Because that is what I would have wanted 18 months ago when I was first told that Ben had CP. I was desperate to connect with other moms that had been there. And because I couldn't find anyone to reach out to, I reached out online. And found all of you.

So far, I have just communicated with these moms via Facebook. We have traded emails. I have met both of them a few times either at playdates or our monthly Moms Night Out (all prior to diagnosis) but I do not know either of them very well.

All of us deal with this kind of news differently. So I'm trying not to scare these moms away by emailing them constantly or calling them at home. But I really feel that I have something to offer these moms. And I'm hoping that we can all be a support for each other.

So this is my question for you. What do you remember about those early days after the diagnosis? What did you want or need?


  1. I think thats wonderful!!! Every one is different but depending on when they received the diagnosis, well in the beginning all I wanted/needed to digest the news was time, and a shoulder to cry on, and some really yummy decadent treats at the ready. My son as you know doesn't have CP but spina bifida but I think the grieving process is similar. I think its great that you have made yourself available to them, give them time. They might not want to talk or hear how things are going to eventually be okay just yet. Every one wanted to tell me that, mostly people who did not know anything about it but i was reluctant to even talk to parents in those early days (on line) who had been through it. I was afraid to learn about things and yet I wanted to devour every thing about it, those were tough days. Now all of these months later, I would give anything to reach out to some one in person who has been through this journey and I'm sure they will reach out when they are ready too. Have you given them your blog address to check out when they are ready perhaps? Its a blessing that they will have you.

  2. Good question, CaryAnne!
    When Faith was dxed I wanted INFORMATION! I read, googled and ate up all I could get my hands on. I wanted explanations of what was going on and what that meant for her. I wanted to talk to moms whose older kids had it so I could get an idea of what to expect and what kids with CP would look like. Some of the info I got from people was wrong or misinformed or uneducated but I had to figure it out on my own, over time.

  3. My son doesn't have CP but has autism. But we went through a similar grieving process. I wanted another mom to tell me what had worked for their child, what doctors to contact, what therapies to try, costs, how to get things paid for. Just basically someone to guide me because it's great that there are so many things out there to try but sometimes there can be such a thing as too many choices.

  4. I think that just being available is so important. Maybe just sending them a check-in e-mail every once in a while. Some people will worry about burdening you. Sharing any resources you've found helpful--support boards, local agencies, etc. is probaby also good. I wanted a lot of information in the beginning.

  5. Ditto Katy. Check in by email, perhaps by phone, just to say 'I'm here'. I would have loved to have known a 'buddy' in my shoes shortly after wouldn't have made me (us) feel so alone. If these moms just found out then they may need time to open up...I was a bawling idiot for months or could cry at the drop of a hat if someone mentioned it. Just be're doing a great thing.

  6. I agree with Holli and Katy.

    I spent the first few months in "hermit" mode and looked up lots of info on the net. What I really determined is that all situations are different, all children are different, and two children with the same "diagnosis" are different. There is no "right" way to do things - just the way that works for you. For me, I did a lot of grieving at the beginning, but things are getting easier as Al.ex gets older.

    Like Katy said, just having someone there that I *could* contact if I had a question or needed advice would have been very valuable.