Monday, March 21, 2011

A member of our club

I always wished I could be one of those people who said that I've had the same best friend since 2nd grade. I never had a lot of friends growing up which I think stemmed from insecurity and I always wanted to have that one true "sister-friend," that friend that you could tell anything, that friend you loved like family, that friend who would bail you out of jail (for the record, never been there) or, as the joke goes, would sit in the jail cell with you and say, "that was a heck of a ride!"

Then I became an adult. I met my Jason, moved to Noblesville, got married, and started feeling settled in a town I love, with a man I love, and made some new friends. And over time, over the course of 3 kids, through jobs, through neighbors, through church, and through Jason, I met some incredible, kind, loving friends. And by the time I got the call from the genetics counselor who said, "your amnio tests came back and your daughter has Down syndrome," not only was I lucky enough to have loving supportive family to call, I had 5 best friends to notify as well. I am blessed. Okay, so maybe not all of them would sit next to me in that jail cell, but I love them like sisters. And I knew they would love my daughter no matter how many chromosomes she had.

Over the past 2 years I've been lucky to meet new people in the Down syndrome community. I wouldn't trade my bests friends for ANYTHING, but we all need those people who are experiencing the same things as us: NICU's, surgeries, delays, glasses. I feel like we are members of an elite club. These club members can give us perspectives that the experts and specialists can't. I've met some of these people by blogging and message boards and mutual acquaintances. Every so often you see someone out in the community who has a child with Down syndrome and start up a conversation. It happened to me once at the Children's Museum when Lexi was a baby and I was sitting alone feeding her. A mom and her 6 year old daughter who has Down syndrome walked by. The mom was very nice, but our time to talk was limited since her daughter, who was so sweet and fascinated by Alexis, was not up for sitting still while we chatted.

I always hesitate to approach anyone with Down syndrome. I was once told of an older child in our city who has Down syndrome and he doesn't know it. I also worry that I'll think someone has Down syndrome but they don't. Some new moms are understandably uncomfortable talking about their child's Down syndrome because it's still new, still a shock. It can take a while for the grief to subside. It can take a while before we're ready to celebrate being members of the club. It's easier, when I see someone with Down syndrome, to give them a little smile and keep walking. And if they want to approach me, I'm thrilled.

And then today, I was at Meijer with all 3 kids. Blake was pointing out all the pirate-themed cakes in the bakery. I'm used to people stopping to comment on Alexis. Especially since getting her glasses, she gets stopped more than me flying through a speed trap. And today a lady came up to me, commented on how cute Alexis was and then told me she had a daughter with Down syndrome. My first thought: She's in the club!! She was one of those people that you immediately like; kind eyes, warm smile. Her daughter is about a year younger than Alexis and we stood there talking about our kids like long lost friends. We could compare therapy stories, feeding issues, vision concerns. I think if we'd had some Legos there to entertain the boys and a table and a cup of coffee, I could have sat there talking to her for days. She was my instant ally. It was so comfortable and natural that we exchanged names and numbers (and Facebook accounts--hey, it's 2011) before heading on our way. Already tonight we've connected again and shared some frustrations and relief that we've found someone who feels the same way about some of those frustrations. And I can't wait until I can meet her little angel because I've seen her pictures (what did I do before Facebook?) and she is beautiful!

I wouldn't trade my friends for anything. But I love adding to the list, even if she doesn't want to sit in a cell with me.

Friday, March 18, 2011

Our week in review

We survived the week. It was a slow start since I caught Nick's strep throat, but we survived it.

Alexis had a follow up appointment with the Ear/Nose/Throat doctor who has ordered a sleep study. Her tonsils are still huge and he wants to check for sleep apnea because "almost 100% of kids with Down syndrome have sleep apnea." If (when?) she is diagnosed with sleep apnea, whether or not she has her tonsils removed depends on the severity of the sleep apnea.

I can't imagine doing a sleep study on such a young kid. I know it will take place at St. Vincent hospital (86th street) and I can stay with her overnight. For now, that's about all I know and I'm waiting for someone to call to let us know the date of the sleep study.

We've spent a lot of time with Aunt Paula this week. Thank goodness she lives so close and my kids love being at her house. She has a great porch that serves as the play room where the kids spend most of their time when they are there.

I love watching how Alexis interacts with her brothers. She cracks me up when she climbs up and sits on them. Nicholas thinks it's hysterical.

The love these two kids share makes my heart absolutely sing.

And here's the great Monster Truck race of 2011:

I've had 4 more Everybody Counts presentations this week. The 2 I did yesterday took place at the boys' elementary school. Everything went fine, but while it was great that the weather was absolutely glorious yesterday, the kids in the morning session seemed to look right past me and out at the sunshine. The 2 presentations today at another school went fantastic! I'll be presenting at one more school on the 31st.

Off to enjoy a relaxing and uneventful weekend!

Sunday, March 13, 2011

It's gonna be a busy week...

She climbs.
We had a great time with the family today...I love that Lexi and her cousin are getting old enough to recognize each other and interact a bit.
Preparing for a hectic week: PT, ST, swim lessons x2, MOPS, OT, ENT, scouts, and 4 more presentations for the Everybody Counts program. (I'm also thinking that Moms that work outside the home and still manage to keep up with their kids schedules, are absolute rockstars.) Praying for healthy kids and plenty of rest.

Friday, March 11, 2011

My new gig.

A couple of months ago, my sweet friend Beth asked if Alexis and I might be interested in talking to some 3rd grade classes about Down syndrome for the Everybody Counts program in the Noblesville schools.

I am not a public speaker.

The last time I spoke in public I was a sophomore in college. I gave a demonstration speech for a communications class on how to make Rice Krispie treats. I'm sure the speech was riveting. The Rice Krispie treats however, sucked.

But even though I am not a speaker, I'm always up for showing off any of my kids to an interested audience. Or an audience of 3rd graders who are forced to sit there and listen to me ramble for 45 minutes.

I also think I get comfort talking to kids because I always hope that it might make them a bit more understanding and accepting of kids with special needs. I want it for Alexis. I want her to have friends. After today and her perfect behavior and her charm and exteme cuteness, I think Alexis has about 125 new friends.

I was a bit concerned about holding the kids' attention for a full 40-45 minutes, but the kids were great! I think I love 3rd graders. They asked good questions, seemed genuinely interested, and seemed to really be quite captivated by Alexis. I was a proud mom.

One elementary school down, 3 more to go. And maybe another school in Kokomo. And then a whole new type of speaking engagement in October, but more on that later.

Sunday, March 6, 2011


Alexis finally hit the 20 pound mark! She had her monthly appointment to receive her RSV injections (poor girl knows exactly what's happening. She starts crying the minute we lay her on the table. ) and she weighed in at 20 lbs, 11 oz. One month shy of her 2nd birthday and she's finally out of her teens. Thank you Carnation Instant Breakfast!
Nicholas's school artwork was selected to be on display at the library for the month of March. Look for the tiny black arrow above pointing out his pic.

He's a proud boy. I'm a proud mom.

This picture was worth posting twice. All pictures on this post are courtesy of Jo Jo. Around here we refer to my mom as Paparazzi.

The most exciting moment of the weekend came during Nick's final Upwards Basketball game. All parents, siblings, and grandparents were in attendance. I can't speak highly enough of the Upwards organization. Nick's team consists of 1st and 2nd graders...mostly 2nd graders as Nick is one of only 3 1st graders. Nick knew very little going into the first practice. He could dribble. The other kids seemed to be doing lay-ups on day one. Blindfolded. But Nicholas beamed any time he was in possession of the ball. Granted, that was usually only when the ball was passed in bounds to him, but the grin on his face was infectious.

Hi Blake.

By the last game, he was the only kid in the league who hadn't yet made a basket. Not for lack of trying, but it just wasn't in the cards. God bless some of his teammates who I'm sure were prompted by our wonderful coaches.

"Try to get the ball to Nick."

Even the refs got into the act. They were a bit quicker to call the foul giving Nick an extra attempt at the foul line. But to no avail.

But he was still smiling.

But then. Could it be?

Nick got the ball. The ref might have accidentally gotten in the way and blocked out a kid or two from the opposing team. (Did I mention that the kids on the other team were the size of a Pacer?)

And he takes the shot.
And he MAKES the shot.

And the crowd erupted! (Okay, erupted might be overstating it a bit, but this is my story.) And this proud Mamma's tears flowed. I think all the parents, Nick's teammates, and the coaches were as excited as me. The coaches hugged my kid, his teammates were patting him on the back. And after the game, when the kids are presented with their stars of achievement, the asst. coach got so choked up with pride for Nick that he couldn't even speak.

Upwards rocks. Almost as much as my kids.

Tuesday, March 1, 2011

Happy Derbyday!

It was a busy weekend.
Nicholas and Blake participated in their first ever Pinewood Derby. Nicholas competed against his den while Blake was able to compete against anyone who wanted to enroll in the open class. Blake may not have won any awards, but I think he had the best looking car there...or maybe I should say the best looking ship. A pirate ship derby car complete with removeable masts and jolly roger flag.

Nicholas picked out his own car design and has worked with his dad for weeks on shaping, sanding, and painting his car. He worked so hard and all that work paid off. He won every heat and I've never seen that boy so proud! (Rumor has it, he even set a new track record!)

Video of the win can be found at .

Video of the trophy presentation (poor kid can't get his hands on that first place trophy fast enough!) can be found here:

Alexis and I were unable to attend the local festivities due to a significant milestones taking place in Michigan: Grandma Carol's 90th birthday.

It was a pretty good turnout. 4 of my grandma's 5 kids, 8 of her 11 grandkids, and a handful of great grandchildren made for a total of 29 people for a lovely dinner. Most of my cousins I hadn't seen since we had all gathered for her 80th birthday, so it was nice to see them and meet and introduce some of the great grandchildren who hadn't even been alive the last time we had gathered.

Some favorite pics from back in the day.