What we did and when we did it. Sometimes.

What we did and when we did it. Sometimes. People, places and events to remember.

Thursday, April 4, 2013

What a Difference a Year Makes

Let me take you back to 2012.  March 21, 2012.  Ben was almost 8 months old, and he was adorable. 

Those first several months of Ben's life had been a blur - all the usual stuff like school, soccer practice, church, and MOPS, combined with a new baby, family visits, and LOTS of time spent with the breast pump, doctor visits, starting therapy ... and reading nonstop online about Down syndrome.

I was - and am - incredibly thankful for the blogs and forums that I found online, but I desperately wanted to connect with someone in real life.  

Ben's first case manager for Early Intervention heard my pleas for relationship, and she introduced me to another local mom.  She also gave us contact information for several more families.  Nellie and I had a playdate with our boys at a park, then talked to the other moms to set up a potluck for our first World Down Syndrome Day.  Seven families attended.  Most of us had a child under three years old, and I felt like I was clutching a lifeline.

After that initial meeting, we slowly gathered a group of families who met regularly to learn and to encourage each other.  We now meet the first Saturday of every month and alternate between family outings (park playdates, a Halloween party) and parents nights out.  We've gone to birthday parties for each other's children and called one another for advice and sympathy and doctor recommendations.  

Beyond relationships, many other connections have emerged.
  • We met a local mom who started a Down Syndrome Association for our area 
  • Our parents were asked to talk at a local school for Down syndrome awareness month.
  • Our families were invited to meet with a group of students in the university's Occupational Therapy program.
  • One of our moms happened to meet the mom of a teenager with Down syndrome (finally!).  We had been longing to meet parents and kids further along in the journey.

On March 21, 2013, we had our second annual World Down Syndrome Day event - this time, at Chuck E. Cheese.  I don't have the official numbers, but I think we had about 30 families attend - over 100 people!

It was amazing to see all the kids - ages 7 months to seventeen years old - and their families, laughing, playing, eating pizza together.  I saw moms of preschoolers sitting in booths with moms of teens, asking questions.  I saw older siblings talking to new parents.  I heard one mom ask another about swimming lessons because both of their boys love the water.  And I saw so many moms with tears in their eyes as they looked around and realized how many of us there are.

These families are a gift.  I cannot thank God enough for the friendships made, the information received, and the knowledge that my family is not alone.


  1. That is fantastic, Deborah! Thank you so much for sharing this story. It is wonderful to make long lasting connections.

  2. It does not surprise me in the least that you would have found/created this kind of community to share your lives! Praise God :)