Saturday, May 30, 2015

Rockin' Moms - What my online support group means to me

When I found out Cade would have Down syndrome, I immediately went online in search of a group.  I like groups.  I've always been a birth-club-joiner with each baby, so it was natural for me to want a group of moms whose babies all have Down syndrome. 

First I found Babycenter, where I'd been on birth clubs for years.  There's a group for Ds moms and I didn't hesitate to join.  The only problem?  It's a public group and attracted a lot of "lookie loos" who were just there to watch the continual train wreck of moms with new diagnoses.  It also attracted a lot of people who believe abortion is best for diagnoses like ours.  Still, I made a few friends. 

Thankfully, one of those friends invited me to a new group on Facebook.  She said "It's wonderful and you've got to join.  You'd love it."  So I did. 

That was the day I joined the Rockin' Moms '13.  A community of women who all had babies with Ds in 2013.  I was tentative; I'd tried other groups and didn't find that I belonged.  But within a few days, I knew that the Rockin' Moms would become very important to me. 

Two years later, here's what they mean to me:

  • unconditional support - whatever we're going through, the Rockin' Moms are there for me.
  • experience - we have about 100 moms in our group and whatever we face, someone else has been there.  
  • friendship - some of the Rockin' Moms have become my best friends
  • meeting in person - nothing better on earth than meeting a best friend in person for the first time
  • advice - what questions to ask a new doctor?  what tests do we need to run?  Is this rash worrisome?  
  • middle-of-the-night - with 100 moms from all over the world, there's always someone online, great for the middle of the night when I'm up with a feverish baby
  • diversity - I can say without a doubt that I never would have seen myself becoming close friends with a goth mom, yet Ds brings us together and leads us to realize how many things we have in common.  Now I talk to my goth mom friend every single day.  I also have friends in Israel, Australia, England, and Ireland.   
My Rockin' Moms are my lifeline to sanity, to information, and sometimes to peace & calm.  It's the first group I check in the morning and the last group I check at night.  I usually have dozens of texts a day from my closest friends and we always check in with one another about medical tests, issues, illnesses, etc.

Now for the best part: there are lots of Rockin' Moms groups now, containing over 1200 moms.  Each one is a birth club, capped around 100-125 moms so that real community can form as moms get to know one another.  It's become a part of the Down Syndrome Diagnosis Network.  As moms find out about their babies, they're welcomed into the Rockin' Moms Pregnancy group, and then into a birth club.  Each mom receives unconditional support and love.

And now, even more, each baby is welcomed with a gift through the Rockin' Family Fund.  (It still amazes me how many moms with a baby with Ds never hear "congratulations".)   The fund also supports families in the hospital and those who are grieving a baby lost. 

Shouldn't every mom have my experience?  I agree!  Share the love by donating to the Rockin Family Fund.

Behind every child born with Down syndrome, there is a mom. The Down Syndrome Diagnosis Network exists to support these parents through the diagnosis experience. Our Rockin’ Family Fund fuels our work.
Help us spread the love! Your financial donation lets us embrace our moms and dads with the care and resources they need, when they need it most.
  • When they’re new to the diagnosis: A warm welcome to our community with helpful information—and a message of congratulations, possibility, and encouragement that’s so often otherwise missing from the experience
  • When a child undergoes surgery or has an extended stay in the NICU: A card and
  • care package to remind parents they’re not alone and promote community among all our member parents
  • When a child with Ds passes away: a special gift to commemorate and celebrate that child’s life, and remind parents that they are always a part of the Rockin’ Family
  • When a parent wants to learn or recharge: a scholarship to attend Ds-related conferences, classes, or events.

Help us fulfill our mission and give our Rockin’ Families the support, love, courage, and community they need. Donate now. #sharethelove

Read more about what this means for families here.
Visit our website today!
The Down Syndrome Diagnosis Network is a registered 501(c)(3) charity. Your donation for our Rockin’ Family Fund is 100% tax deductible.


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