Tuesday, March 5, 2013

The Lucky Ones

When Bear was a little over a year old, his physical therapist mentioned that she was working with a family w/ a newborn with Down syndrome and that the mom was wanting to connect with other mommas.  I was thrilled to meet someone in the area who was on the same journey, so I agreed to exchange contact info.  That mom and I met and closed down Starbucks that night.  And time went on and both of us became more connected to the Down syndrome community in our area.  Before we knew it, there were about 15 of us in the Indy/north Indy area, so we started a Facebook group to be able to connect regularly.  Last summer, we had our first official girls' night out and since then our group has nearly tripled in size to almost 50. 

We've gained a lot of new mommas to the group over the past few months, and when meeting a new momma, it's so hard to remember that she is probably still reeling and coping with some grief, because on the other side of that grief is such joy and deep love.  Those first months after the diagnosis is a really hard place to revisit because they were awfully lonely and dark days filled with fear of the unknown.  So at our girls' night out this fall, I was telling some moms from our group (called Moms of Kids with Down syndrome) that at first it's so scary and that we have to grieve the loss of the child we thought we would have.  But as time progresses and we get to love our wonderful children, we realize we're the lucky ones for having a child with special needs.  And so our group became, "The Lucky Ones."

I can't begin to describe what this group of women has meant to me.  Our daily Facebook posts of questions, concern, encouragement, and inspiration get me through those times of discouragement when Bear isn't progressing like his typical peers.  I've made some dear, dear friends through this group...girls who upon meeting for the first time become instant sisters (because when you share something like Down syndrome, you forget all the small talk and get right to the core of the issue: did your child have open heart surgery when he/she was a few months old?  Did you have to have a G tube?  Is your 3-year-old walking yet?  4-year-old talking?  5-year-old potty trained?  What have you done about Medicaid Waiver? Social Security? and so on and so forth.  Oh how your topics of conversation change when you have a little one with special needs.)

What doesn't change is our fierce love for our children.  Like any mom, we would give our lives for our kids; we just get to experience the raw, unbridled love that comes with a child with special needs.  And if you didn't read my post On Love the other day, now would be a good time to do so.  Love does not mean it's all warm fuzzies all the time.  Love defined is seeking to know and intentionally meet the legitimate needs of another.  I can't think of a more appropriate definition of how "lucky" we are to LOVE our special kids!
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