Tuesday, October 16, 2012

My RAS friends

Last week, I connected with another RAS mom online.  A commenter, Amanda, heard about my blog from her sister (whose blog I follow) and it helped her to give a name to her son's seizure issues.  I was grateful that this blog could be a resource to another mom going through the same things we have, and was selfishly also glad to have connected with a friend to talk to about it all.  An RAS BFF, if you will.  I love when things work out like that.

And as if that wasn't enough, today I met another mother of a child with RAS.  In person!  Even though it's rare, I knew that in a city of 10 million, there was sure to be at least a handful of families dealing with this condition.   I just didn't know how to connect with them - and I certainly didn't expect to find one right under my nose. 

I could hardly believe it when Michelle introduced herself this morning and told me about her daughter.  It turns out that one of the preschoolers in M's co-op has RAS, too!    Well, 'had' may be a more appropriate word - Michelle (my other new RAS BFF) said that Lucy only has about one episode a year now.

That's Lucy in the blue shorts, across the circle from my boy.

It's so encouraging to hear a mother talk about RAS as if it was something from her daughter's past.  I've read so much about kids not actually outgrowing RAS that I had started assuming it would be a lifelong struggle for L.  Our talk this morning was a welcome reminder that it's likely we won't be dealing with L's seizures forever.

I would never wish RAS on anyone (except maybe some of those doctors, hmm...) but I am grateful to be connected to two new friends that will be able to relate to this aspect of my life.  And I'm cooking up a plan to talk them both into writing their stories so I can publish them here, too!   What do you say, girls? 






15 comments:

  1. It's the best thing in the world to find another person who understands...really understands...what you are going through. It's just so validating and comforting!

    I'm so glad you've found not one...but two RAS BFFs! I hope you can convince them to share their stories! --Lisa

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    1. Thanks, Lisa! See that girls? The public is crying out for your stories!

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  2. {Melinda} I am so glad you made connection with other moms who understand what you are going through. My son has cystic fibrosis (only 30,000 have this in the U.S.) so although not as rare as RAS, I don't cross paths with moms who have children with CF and can understand the issues our family faces. And it really does help to have someone who really "gets it." Although I find I connect well with moms who have a child with any kind of special need. Our experiences aren't exact, but similar. I'm happy that God is providing both face-to-face and online support for you! Hope that I can be a support for you, as well. :)

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    1. Thanks for commenting, Melinda!
      I'm sorry you haven't yet found other CF families to connect with, but I agree, it is usually easier to connect with families dealing with other special need. I'm so glad to be connected with you and all the other women I've been connected with through this blog and the online community! I

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  3. There is nothing like that community- no matter how many friends and family I had to "help", they hadn't "been there done that" and couldn't even begin to understand no matter how much they wish they could, so it made me feel even more alone.

    Steph

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    1. Thanks, Stephanie. I was just chatting with another mom about how being a mother can sometimes be so isolating, even when you are surrounded by other mom friends. This blog has really helped me, because by opening up about our struggles, I have found that I connect with so many women. I think our struggles bring us closer together than just talking about all the good moments and keeping hard things to ourselves.

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  4. I'm so happy for you! It makes a world of difference when you have someone that understands you and your struggles. That is great, and yes, I would be very interested in reading their stories.

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  5. Robin, I'm really happy for you! It must feel good to have people who you can relate to.

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  6. I'm working on it right now:) I'm so happy I met you and I now know what my sweet Preston has! So neat how things come about. I will send you our story soon! xoxo

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    1. This is Amanda, I did not mean for it to pop up under the blog name:)

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    2. Great, Amanda! I'm eager to share some other perspectives - thanks again! Don't forget a picture of your cuties (well, if you want to.)

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  7. Nice to meet friends with similar situations!

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    1. It it always nice to hear from you, my friend!

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