Yo soy La Lay

adventures in family, faith, and Down syndrome

Lesson #23: There is an abundance of support

on October 23, 2014

The first few hours days (?) after a diagnosis can be, quite frankly, isolating.  Few really quite know exactly how to respond.  Somehow, your family has become different and you really aren’t sure how.  You feel like the same person and entirely different at the exact same time.

Soon, support comes trickling in.  Or flooding in, as the case may be.  It flooded in our world.  We were blessed with that.

Since Tessa has joined us, I have joined UPS for DownS, NADS, a Down Syndrome Diagnosis Network‘s Rockin’ Moms Facebook group, a local mom group called the MODSSQUAD, another local Facebook group called Gene Rockin’ Moms and a Baby Center group.  There are a mountain of blogs that I read (check out my reading list on the sidebar).  I follow Gigi’s Playhouse on Facebook and get their mail, also.  We haven’t gone yet.  Quite frankly, with all of the support, we’re still not sure where we fit in.

When I first started out on this journey, I felt like an impostor.  I vividly remembered life Before.  Ten months ago, I didn’t even know that advocacy like this existed.  Special needs were not on my radar.  I have no idea what I spent hours online doing.  And I felt like, at any moment, someone who was further along in the journey, someone who doesn’t remember Before, might look at me, the fresh-faced newbie, and think, “Well, where the heck has she been? And does she think she can just come in here and start caring now?  Where was she before?”

I really, really worried about that.  It hasn’t happened.  And it won’t.

Our NICU social worker told me that I don’t have to like all the moms of kids with Down syndrome that I encounter.  Thinking back on that has always made me laugh.  She told me not to feel like I have to befriend everyone with a child with Ds and reminded me that just because we have this diagnosis, doesn’t make our family exactly like any other.  To me, sharing the common experience has helped me forge a bond with some other mommas that I hadn’t met before (I started to list all their names and it got too long, so I stopped).  They are still young friendships.  We are less than a year in, after all.  But my mostly-extroverted self is loving this new opportunity to spread my social circle and connect with moms who can relate.  And I don’t feel much like an impostor at this point.  🙂

Not all support comes from strangers, though.  Tomorrow, a post dedicated to the ones who have been here since Before and are still here.

A completely unrelated Throwback Thursday picture, just because….  

10 month old Ellie

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2 responses to “Lesson #23: There is an abundance of support

  1. lisa170 says:

    Tell me to shut up and go away if this is insensitive but I have a question. You know the game you play when you baby is born, they have dads nose, mums eyes etc? Do you still get to play that game with Tessa given she has a lot of features that show her Ds? Clearly she and Ellie get that crazy hair from the same place!

    • Maggie says:

      I don’t think it’s insensitive at all!! Yes, John and I totally play that game. Mostly, Tessa looks like me. I have been searching for weeks to find a picture of Tessa that looks like one of mine and haven’t hit the jackpot yet. I had wanted to include it in that post with the defining characteristics pictures. I’ll keep searching and share it when I do!

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