Wednesday, February 22, 2012

power of moms

I wrote a little while back about living in your own truth.  I realized that part of that really involves, vulnerability.  The ability to put yourself out there and in front of others in a position that may be uncomfortable.  That can show up in all sorts of ways.  It can be standing up for a cause you believe in, it can be telling a dear friend your most intimate fears, it can be sharing your story on a blog.  In any case, the best part, the most rewarding, fulfilling and ultimately positive thing about being vulnerable is connecting with others.  Having someone 1/2 way across the world, cry as you write, or laugh as you speak of your struggles.  It's such a beautiful thing, when you truly let go and live your life.  Without reservation of keeping up with the "Jones's."  When you stop worrying about losing that last 10 pounds and eat the box of girl scout cookies.  When you love you for you.  But, honestly, for me, it's about connecting.  Feeling that bond when you found that friend, in that moment that "gets it".  Really gets it.  Maybe you connect because your marriages are on the same crash course, maybe you connect because your children are at the same stage in life and it helps to know you aren't crazy.  But, there is nothing more rewarding than mom's friendships.  Because as mom's we are all on this journey and hoping to end in the same place, with happy, healthy children.

Lately I have been struck by how awesome the internet is.  How you can connect with others in a way that 10 years ago, was nearly impossible.  I can't imagine how lonely I would have felt 10 years ago with having a child with Down Syndrome.  How isolated and difficult that may have been.  Instead I was a voyuer on many blogs, forums and groups, to get a sense of my new reality.  It helped a lot.  I rarely reached out.  Liked it in my shell at first.  Scared to offend or admit my inner most thoughts online.  That's the thing about truth and connection, it's work.  It's sticking your neck out, it's stepping on toes, taking risks and knowing it's worth it.  But, the coolest thing I think about the internet, is there is ALWAYS someone JUST like you.  Feeling JUST the way you are in that very moment.  And to know you are validated, not crazy and not alone, it's priceless.  This recently came full circle for me.

A year ago I was knee deep in this journey of being a mom to a child with special needs, I spent many a night scouring the internet for photos of babies with down syndrome not smiling...not cooing, not really doing anything.  I was obsessed for someone to tell me that Nolan's behavior was normal.  I needed a mom who lived it.  Who knew.  I went to doctor after doctor.  Put my baby under sedation for a comprehensive hearing test despite the ENT's recommendation that I don't.  I researched and made goat's milk formula, convinced it was a gut issue.  I paid private therapists to have him evaluated.  And in the end, 5 long, laborious months later, one Thursday afternoon, I googled, "baby flinches."  I saw a youtube video that a mom posted of her baby having Infantile Spasms and bam, it was Nolan.  I immediately went to Children's Hospital ER and within 12 hours had my answer, it was Epilepsy.  I have discussed Nolan's seizures on here before.  It is a rare condition, very rare, so most doctors won't see it in 40 years of practice, I couldn't blame them, but I wanted to.  I wanted to be angry and scream at everyone in ear shot, "why didn't you listen to me?!!!!!".  Armed with a diagnosis, I felt relieved in some ways, we had a plan and then the miracle of Nolan coming to life began and my heart started to heal.  But, now I returned to the online forums and groups that I had often gone to in my own despair and now I knew it was my time to give back.  I didn't start a revolution, or post every day, or make best friends with someone, I simply answered posts that I could.  Reached out when I thought it necessary or helpful.  And one post, "6 months and not smiling" My heart sank.  I immediately posted all I could, urging her to seek a neurologist, this stranger.  And I got an email this past weekend.  It was filled with gratefulness.  It was filled with thank you's.  I am so sorry that we share this journey.  It is not one that I would want to share with anyone.  But, what I am grateful for is the circle of moms.  Who know when to reach out.  When to intervene, when to hug and when to push.  It doesn't take a lot to give back and contribute to this circle of mom's.  It is as simple as posting something online, making a meal, giving a call, we all can do it.

We often are too hard on each other, get caught up in judgements, in competing to be the best in all areas.  I am not innocent on this front.  But, when I truly look out at the sea of moms that I run into on a daily basis, I am amazed at the love and support found, if you look.  If you open yourself up and share your story.  Please do, there is someone, somewhere waiting to hear it, who needs to hear it.


  1. SO well written Grace! Beautiful! And the power of the internet amazes me too. So cool that you were able to help that mom. You should feel so proud of that.

  2. Beautifully said! It can be so intimidating entering the mother-hood... knowing we are not alone is so very comforting!


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