Friday, July 16, 2010

CFS Moms Lunch

Our little local group of moms whose kids have CFS, OI, and/or Lyme got together for lunch again yesterday!  It was lots of fun again and great to talk to everyone.  We all have so much in common that there is never a lag in the conversation!  It's a great group of moms - all warm, intelligent, strong women, all trying to be advocates for their kids and find answers.

We had a new "member" join us yesterday.  We met a year ago at a mutual friend's graduation party, and her daughter is in Jamie's class at school.  She's had undiagnosed fatigue for years now, along with other medical problems, the latest of which is mysterious foot pain.  We told her all about CFS, OI, and Lyme (a common culprit with foot pain).  I was afraid we'd overwhelm her, but she was grateful to finally get some information and possible ideas of what might be going on.  We share the same pediatrician (who, as you know, has been very supportive of Jamie and Craig), so I suggested she start there and tell her she'd talked to me.

Also, some of the kids met yesterday for the first time!  They're all teens (except Craig who is 12 1/2).  There were 5 kids there yesterday (including 1 healthy sibling) - they hung out in the mall food court and browsed at Barnes & Noble while we had lunch.  They all seemed to get along well and enjoyed meeting each other.

Next up: a family barbeque in August!  One of the moms offered to host a backyard barbeque so the rest of our families can meet.  We're all looking forward to it.

It's been so worthwhile for all of us to meet and get to know each other - we've shared our stories, successes and failures with various treatments, strategies for getting help from schools (one of the moms is an ex-school district administrator), and other tips.  Plus, it's so nice to be with people who totally get it and understand exactly what it's like to live with these challenges.  Well, it's like our virtual community on the blogs only face-to-face!

If any of you know of others in your area with CFS, I highly recommend getting to know them!

We're all a little tired today - cuddled under blankets in the family room watching tv!  Besides our lunch, Jamie hosted a game night at our house last night. There were nine kids all together, from 6 to 10 last night.  They had a great time!  I ordered way too much pizza (I thought teens were supposed to eat a lot!) so guess what we're having for dinner again tonight?  It's OK with me - no cooking again!

So, we're kicking off the weekend with a quiet day of rest.  How about you?


Anonymous said...

Sounds like a great time! Enjoy resting. It is wonderful to be around people who understand.


Toni said...

It sounds so wonderful, Sue, that you're able to meet with parents in the same situation. I'm not surprise that the conversations flows so freely. You've all been waiting to find each other for a long time!

Renee said...

Sounds like a great time was had by all.....
Tomorrow old friends from seminary are stopping by to visit us...we are excited to see them! Otherwise a weekend of low key rest and relaxation..

Sue Jackson said...

I know this is a rare event for you, Renee. Rest up and enjoy your visit tomorrow!


Unknown said...

I wish I could go to a lunch with other people who just 'get it'. It must be fantastic.

Hope you enjoy the pizza!

Anonymous said...

Whenever I read about your CFS events it makes me smile uncontrollably. I definitely love coming back to this one because it is where the kids met! Keep up the amazing work!