Saturday, September 10, 2011

The Sisterhood -- revisited

It's been a while since I've posted about The Sisterhood.

What started in May 2009, with only 4 moms (Lisa, Jen, Sheree, and me) with our 4 young children with Down syndrome (Sheridan, Joaquin, Gabby & John Michael), has grown exponentially in just over 2 years to 52 moms and 54 children with Down syndrome. Yes, two families have more than one child with Ds, because they adopted a child with Ds from eastern Europe. Several other families are either in the process of adopting or strongly considering it.

We are connected, most simply, because we all have a child or two with an extra copy of the 21st chromosome, or Trisomy 21. But, this is no ordinary Mom's group. Of course, we have mom's nights out, playdates, and support each other through IFSPs or IEPs (Individualized Education Plan), medical issues, milestones, therapies, or just general questions about raising a child with Ds. These are all very important and necessary functions of The Sisterhood.

But it's also more. Much, much more. These women have become sisters in the truest sense of the word. We know what it's like raising a child with special needs in a world that places very little value on their lives.  Only 8 out 100 moms will choose to keep their baby with Ds when given a prenatal diagnosis.  Many geneticists will offer to make you an appointment for termination as soon as you find out the baby you're carrying has Down syndrome.  Some will pressure you until you finally tell them to back off.  Now, a new, non-invasive blood test for early detection is becoming available.  The company has the nerve to call it MaterniT21.  It's a search and destroy tool before the mom even feels her baby kick.  But, I'm getting off-topic...  Back to the Sisters... Sometimes, when blood relatives are at a loss for words or are unable to embrace a new baby's diagnosis, these sisters are here to offer a hug to say it's going to be OK, offer an ear to listen, and sometimes a shoulder to cry on when no one else seems to understand. We love our kids to the moon and back, and most of the moms say they wouldn't take away the diagnosis if given a chance -- they wouldn't want to alter their child in any way. Others wonder what it would be like if their child didn't have Ds... would life be easier?  And many wish that more people had the opportunity to raise a child with Ds because of how amazing they are and how it positively affects a family!

For me, personally, I never had a sister, and I only had a handful of close sister-like friendships in my life. Through these women, we've learned to embrace our children, advocate for them, share the tiniest milestones and celebrate the biggest victories, from rolling over, to sitting up, to taking the first step or saying their first word. All the same milestones that typically developing babies reach, but at a slower pace.  The victory is extra sweet!  Our online forum never goes a day without a post or two. Lately, our forum activity is on fire and the Sisters are bonding even deeper with each other!  But, more on that in a minute...

We recently met for dinner, a movie and dessert. The film was The Help. Something about the honesty and bonding that took place in that film resonated with many of us. Nearly half of The Sisterhood was present, even Susan B. who had just delivered her 4th baby just 3 days beforehand came with Baby Christian. This is how important this mom's group is to many of us.  Many of the Sisters had never formally met face to face. This was a perfect film for us and many new friendships were formed later over dessert. We learned that one of our sisters is an Air Force pilot! Among our group, we have a university professor, a couple attorneys, postal worker, State worker, hair stylist, teacher and many stay at home moms, to name a few. Several of our moms are expecting another child after having a child with Ds. You would be suprised at how many get asked, "Are you getting tested?" Some do, some don't. Our children with Ds haven't scared us away from embracing another child. What an amazing gift to the family!

Which now brings me to the latest...  Sheree thought it would be fun to start a thread of "Confessions", where we confess something about ourselves that most people don't know or in some cases, haven't shared ever.  What started as fun, has turned into a tome of funny tidbits about ourselves to the most deep, intense thought that we have never told anyone.  We are all sworn to secrecy, so I won't go into details, but several have suggested it would make a great book.  Perhaps... severely edited!  LOL.  And anonymous!!  Not unlike the maids in The Help, telling their stories, anonymously.  But, if you saw the movie... or read the book... the anonymity didn't last very long.  Either way, the stories and nuggets of personal information these moms, these Sisters, have shared have made us laugh and cry.  We've looked deep inside ourselves and have nodded and agreed with many of the thoughts shared on the page.  If this ever gets published, well, I guess it'll be hard to be anonymous.  Somehow the pieces will get put together.  But what our Confessions show us, is that we're all human.  We're all REAL women with real struggles living real lives, and the bond we've created through our writing has cemented our Sisterhood tighter than ever.  Stronger than any sorority.  Stronger than blood. 

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  1. Absolutely beautifully said Monica!! Wow... What a tribute to our amazing "family"

    Love you!!!

  2. Wow, Monica..I have always known the awful statistic about 92%...but when you think of it in terms of "only 8 out of 100 will choose life for their baby"- no wonder our bonds are so strong as mamas! I wish I lived closer so I could come to one of your sisterhood gatherings!!

  3. PERFECTLY written!!! Thank you for this written testament! xoxoxo

  4. I was just thinking about this today at the buddy walk. Thinking about all of the friendships I have made because of Morgan. Some of my closest friendships have come out of that common bond. And the friendships have grown even larger with facebook and blogs. We are so blessed to have each other! xo

  5. Monica, well said! I love it. I am so blessed to call you all my friends and 'sisters' as well.

  6. Thanks, Monica. What a special night and what a great group of women. So glad I got the chance (thanks Mitchell) to be a part of it!!

  7. I am seriously jealous of your Sisterhood. I can only imagine having such an amazing group of friends who truly understand.

  8. This is my second comment, because I think I did not post my first?!

    OHHHH I want to join your sisterhood! Can I be a long distant member?! Please! :) I have been thinking of you and hope all is well! I see on FB you are running! Awesome! Hope the school year has started out great for you, it's such an adjustment from the relaxing summer... xoxo Andrea