This Big New Thing.

Y'all, this is a long story.  I haven't written about it because it's been so crazy.  Amazing, but overwhelming.

Ben was born in July of 2011, and he was diagnosed with Down syndrome.  I needed community.  I had questions.  I was scared.  I found some supportive groups on-line, but I craved real relationship with other families in my town.
 
God provided in a major way.  When Ben was six months old or so, I met my friend Nellie.  She and I had both been asking our Early Intervention case manager for contact information for other families.  After enough asking (the squeaky wheel gets the grease!), we each received a list of 5 families or so.  She called me, and our support group was born.

Nellie and I met for the first time at a local park.  We talked, and I watched her beautiful boy crawl and play and wave - and it was so good to have a friend, and to see the hope and possibility in her son (who is one year older than Ben).

We thought it would be fun to celebrate World Down Syndrome Day 2012 together, so we divided up our little list of families and invited everybody to a potluck.  Seven families came.

Over the next couple of months, in fits and starts, we began to become a group.  A community.  We had a moms' night out.  Then a pool party.  Then we started meeting monthly for dinners or playdates.  Gradually, more families joined the group.  We met some parents of teenagers with Down syndrome.  Families of elementary students joined.  At our second World Down Syndrome Day event, we had around 100 people attend.  Boy, was it noisy that night at Chuck E. Cheese!

We started talking about events.  What else could we do?  Several of the moms suggested a Buddy Walk, so we learned about that.  In order to do a Buddy Walk, you have to have a sponsoring nonprofit.  We thought we had a partner organization, but that fell through.  I cried.  Then we regrouped.  An awareness walk!  Not really a fundraising walk, but an awareness walk for families to come and get together and celebrate our family members with Down syndrome.

The group did a BBQ plate fundraiser that raised just over $2000 for the walk.  And we started planning.  Our little support group filed papers to register as a corporation in Texas.  We elected a Board of Directors.  We created a website and a facebook page.  We've filled out forms and sent off information, and we are now in the process of becoming a 501(c)3.  Until that comes through, we are established as an organization through my church, BT McAllen.

Now here we are.  Two weeks before our very first Step UP for Down Syndrome Awareness Walk.  As far as I know, this is the first Walk of its kind in our community - the Upper Rio Grande Valley.  As of this moment, over 275 people have registered to attend as either walkers or volunteers.  Several local companies have agreed to sponsor the Walk.  College students, churches and Harley Davidson groups are coming to volunteer.  We've reached out to local doctors, therapists and schools - and have had a great response.

I wish I had the right words to say here.  I am amazed and thankful and blessed and excited about this organization.  About these people.  About the awesome opportunity we have to celebrate Ben and Roman and Alex and Ella and Tommy and Sammy and Celinda and Melinda and Mason and Emily and Karina and Madi and ... and ... and ... lots of people that I haven't gotten to meet yet.

And I'm astonished by the doors that have opened for us across the Valley.  And across the US - the Down syndrome community has been very welcoming; we've received help and support from our neighbors in Brownsville, the Down Syndrome Association of Houston, the Down Syndrome Association of South Texas, friends in Kansas City and Chicago, and Down Syndrome Affiliates in Action.  Not to mention the other moms that I've met on babycenter.com and facebook!

I was elected President of the RGVDSA, which is kind of crazy because Ben is only two years old.  I feel alternately terrified, enthusiastic and completely inadequate.

But I know that I need to have real people in my life to answer questions, to celebrate my child, to understand my fears and concerns, and to help us navigate through this journey.  I want our community to be a place that values and includes people of all abilities.  I want to advocate for my son, and I want to provide resources for other families who need support - whether they have a baby with Down syndrome, an older child, or an adult family member.

For my praying friends, would you pray for me and for our group as we put this organization together?  And pray for this Walk!

If you're local, join us at the walk.  And everybody could like us on facebook.  :)

This is the start of something big.

Houston: Visiting Doctors and Being Tourists

Just before school started, the boys and I made a quick trip to Houston.  Ben had an appointment with the developmental pediatrics team at the Down Syndrome Clinic, and Evan wanted to eat dim sum.  We figured we could kill two birds with one stone!

We made the most of it.  It's a six hour drive up to Houston, so we got up early on a Wednesday and drove till mid afternoon.  Our first stop was the Down Syndrome Association of Houston.  The executive director, Alejandra Lima, and her staff were so welcoming!  She gave us a tour and lots of information about how the DSAH operates.  (This was vitally important because we just established a Down Syndrome Association in my town, I'm the president, and we need all the help we can get.  One of these days I'll write about that whole journey.)

Next, we were supposed to visit one of my facebook friends - Anna - whose daughter Sophia is beautiful, close to Ben's age, and has Down syndrome.  I was excited to meet Anna and Sophia in person, but we were so rushed for time that I had to call and cancel.  Such a bummer!

Instead, we drove into Houston to stay with one of my friends from college (Regina), her husband and little boy.  Evan was super-impressed with their house and their dogs.  He was also full of energy.  It didn't take long for him to break a picture frame (sigh), so we got him out of the house and took him to the park to use some of that energy.  That night, Regina and I stayed up talking about college and life afterwards ...

Thursday was the big day!  Ben was on the waiting list for this clinic for over a year, so when he finally got the appointment, we were a little bit excited.  I got lost on the way, but managed to arrive on time anyway.  We hung out at the clinic from 8:30 a.m. to noon.  First Ben saw a speech therapist, then an occupational therapy team, then a pediatric resident and pediatric fellow, and then finally the developmental pediatrician.  And a friendly genetics student sat in on most of the sessions.

Overall, everybody was impressed with Ben.  The staff were positive and encouraging.  After the assessments, both speech and OT said that Ben is developmentally around 18-21 months.  So he's got about a 3-6 month delay.  That sounded good to me.

 

Sidebar:  I struggle to know how to think about Ben's development.  I'm with him every day, and every day I see him learn something new.  I think he's a fantastic kid and I don't tend to worry too much about how he's doing.  However ...

I just received the written report from the Clinic, and it recapped everything the speech and OT people said, but it also included a Gross Motor assessment of 8-9 months.  Whoa.  That was a punch in the gut.  I know he's not walking, but I don't think of him as being that far behind.   I don't usually quantify his delays.  I just think "well, he's not walking, but he's doing way better at trying to stand independently."   

Silly boys at the doctor's office:

Back to Houston.  We finished up at the clinic and went on a search for dim sum.  Regina had given us the name of a place in the neighborhood, so we headed there instead of driving out to Chinatown.   Ben knocked out in the car, and slept in the stroller all through lunch, so Evan and I had a pleasant mom/son date.  He devoured two plates of siu mai and sampled everything I ordered.  Fortunately, Evan wasn't a fan of the taro, so I got to eat all of those.  My favorite!

Then we were off to the Space Center.  This was a great place for Evan!  We took a tram tour of the Space Center, so we got to see the real Mission Control ("Houston, we have a problem"), a mock up of the International Space Station and the real Saturn V rocket - HUGE.  



Evan loves to learn, so he explored and listened and read placards while I entertained Ben.  When we got back to the main building, Evan climbed a climbing wall while Ben and I played with balls in the "Angry Birds Space" kids play structure.

We didn't get to the Space Center until 3 p.m. so we stayed until it closed at 6 p.m.  We drove through Houston, had dinner at Cracker Barrel and found a hotel.  Friday morning (my birthday!), we drove a couple of hours to a little town near Victoria, where we had lunch with another friend, then did another 4 hours to get home.  Whew!  And then - we went to Open House at the kids' school.





We packed a lot of activities into our Houston trip, and I look forward to going back again!