Sunday, March 31, 2013

Happy Easter!

Easter weekend was a whirlwind.  In 2 days we celebrated in 4 cities.  This included 4 Easter egg hunts.  I'm in a Twix coma.
Hunt #1 with our church in Noblesville.

We went straight from the egg hunt in Noblesville to the grandparent's house in Kokomo to have Easter with cousins and aunt and uncles.

Blake was a tad excited to find a Skylander in his Easter basket.  A tad.
Lexi paused to admire herself.
We returned home Saturday night and woke Sunday for church.  We returned home from church long enough to pack up the suitcases and head to Logansport for another family Easter dinner.  And another egg hunt.  Lexi's got it down now.

Lexi's first ever Easter dress and new Easter shoes.  Some days you just have to pass on the orthotics.

I was telling the boys how I think that the Easter bunny works with Santa Claus to discuss all the kids and who is good and who's not.  In fact, I think the Easter bunny works with Santa and the tooth fairy and the Great Pumpkin.  Blake looked at me funny.  "Mom!  Remember, the Great Pumpkin isn't real!"  Glad he cleared that up.

After more quality cousin time, we left Logansport and are now with the other Grandparents in Elkhart.  And I'm going to bed.  Tomorrow I tackle the Snickers.

Blessings to you this Easter!!

Wednesday, March 20, 2013

Happy World Down Syndrome Day (tomorrow), my sisters!

Down syndrome has given me a lot: a lot of understanding, a lot of frustration, a lot of patience, a lot of uncertainty, a lot of appreciation.  But the greatest gift Down syndrome has given me is the other moms of children with Down syndrome that I have met.  They are my sisters.

I have met many moms over the past 4 years that have children with Down syndrome.  I've met moms on line, in grocery stores, at school, and most recently through a mom's group.  And it's an incredible experience to meet another mom, not know anything about her, but once you learn she has a child with Down syndrome, you know a part of her intimately.  We cheer together when that little baby is finally released from a long NICU stay and gets to go home.  We struggle together when we see for the first time in writing, the results of that first round of testing that spells out all those delays.  We celebrate little milestones like finally using a straw or clearing both feet off a floor when our little one learns to jump.

There's the joy when after over 2 years of waiting (2 years and 3 months to be exact), we finally hear the word "mama."  We cry together when we want so desparately, and struggle, to get our child the education and the services and the acceptance they deserve.  We know the guilt we all feel on days when we don't like Down syndrome. 

And we understand the devastation the first time we heard that our child had Down syndrome and the way that devastation gave way to a pure deep unconditional love for our sweet children.

This isn't to say that this sisterhood replaces or even trumps our other friendships.  My best friends that were my best friends before Alexis arrived, remain my best friends.  Those 6 women that I first contacted with the exciting news of my 3rd pregnancy, and then contacted again to tell them of what felt like the most devestating news of Alexis's Down syndrome, will forever be held close to my heart.  And there are plenty of times that the last thing I want to talk about is Down syndrome, and quality time with a friend, talking about everything but Down syndrome, is exactly what I need.

So on 3-21, also known as World Down Syndrome Day (the date, 3-21, is representative of the 3rd copy of the 21st chromosome.  Clever, eh?) I celebrate the sisterhood...these women that I am so grateful to have in my life.  These women who are there to answer questions, to sympathize, to vent to, to celebrate with.  For my new sisters, I am grateful.

Wednesday, March 13, 2013

Fix it.

Poor Alexis has been sick.  Even though she just had strep 2 weeks ago, usually she's a pretty healthy little girl.  So it was very confusing and upsetting to her yesterday when she threw up.  She didn't understand what was happening.
"What is it?"  She choked out, tears running down her face, and that lower lip sticking out in a most pathetic way. 
"You got sick," I said, rubbing her back and holding her hair back.
"Fix it!" she pleaded.

While it's so hard to watch my child feel bad, my second reaction to her demand to "fix it" was gratitude that she can communicate that need to me.  She can point at her stomach and say "Tummy. Hurt."  Even during moments like this, it's like a little milestone that I quietly celebrate.