Monday, October 3, 2011

Day 3: Rain, In Perspective


Rain rain, Go away, Come again another day...

You'd think the sky couldn't possibly have any more rain to give after all we've had in the last month or so.  It's been unbelievable.  And as dreadful as we perceive it ourselves, there are substantial benefits.  The marigolds on our back deck and the flowers lining the path to our doorstep have never looked better, never so full and healthy and happy, all without a drop of water given by our hands from a hose or a watering can.  Kind of sad, though, that with this latest bout of rain comes the chill we've known was coming eventually.  44 degrees for more than one night will surely kill them, stopping vitality and viability right in their tracks. 

The original weekend forecast was chilly but sunny - you know, when you see that big, round, yellow thing in the sky and on the week-at-a-glance display on the wall behind the evening news weather forecaster.  The inevitability was so tantalizing I could almost taste it, with a whole weekend of outdoor activities planned for me and Samantha.  The reality was grim, with clouds, wind, rain and 50-something degree temperatures at mid-day.  But we soldiered on, determined to make the best of it.

On Saturday, in perfect time for the start of Down Syndrome Awareness Month, we attended a local Buddy Walk in a neighboring state with friends, not one we'd ever gone to before.  It was a much smaller production than ours, but intimate and friendly, welcoming.  And coldBrutally cold.  And wet.  Samantha, ever the homebody, decided after about 3/4 of an hour there, she'd had enough.  I think part of it was to do with the weather, but part of it also had to do with the fact that weekends, in general, are completely out of daily routine.  While she doesn't nap during the week anymore, weekends are the care-free, anything goes, loosey-goosey kinds of days, with so little structure, and she has a harder time dealing with all of the changes without a nap to rejuvenate her poor, overwhelmed body and mind.  And there's rarely time for naps on the weekends these days, other than 5 minutes here or there in the car, when her eyes...just...close...

The thought of eating pizza standing up in the rain outside at the Buddy Walk was pretty unappealing, and we made a hasty exit and collectively decided that a playdate and lunch in a cozy, warm house, would be a much better answer for all of us.

On Sunday Sammi and I attended a welcome-to-the-world party at an outdoor picnic pavilion for a baby boy with Ds, recently recovered from open heart surgery.  Rain-and-cold-be-darned, it was a wonderful time, and the sweet little man of the hour slept through the whole thing, perfectly content and, more importantly, healthy.  I met some amazing people, and Samantha was on her best okay behavior (she'd fallen asleep in the car 5 minutes before we arrived, so you can only guess what her initial attitude might have been like...).

I think I need to write a post this month about CHD (congenital heart defects) and the overwhelming incidence of it in children with Down syndrome.  Oddly, I have met rather few people in this area who have had a defect that required open heart surgery.  That's a really good thing.  But I know they're out there.  It's funny, I can put it all behind me and not think too much about it most of the time, able to look objectively at all the events leading up to it and at the fact that it's over and done with.  I can talk to Samantha about it (if you point to her scar and ask her what it is, she says, "The doctor fixed my heart.")  But when I am talking to someone that's just gone through it themselves, it all comes tumbling back, all the memories, all the fear that we had, the fact that Down syndrome was nothing to worry about when you had something life-threatening hanging over your child.  That's when I feel all those feelings again, and my eyes begin to tear up.  That conversation came up a few times at the party, from people that had so recently faced it and won, for whom it was still very fresh, people who have learned just how fragile and how amazing life is.

Having a child with an extra chromosome makes you realize it's all about perspective.  Like the rain and the cold, there are things that really don't matter in the broader scheme of things - it's the company you keep, the children you love, the health and well-being you all have that matter most.   

 Dancing with Veggie Stix

12 comments:

Team Lando said...

Please tell me that they make her legwarmers in an infant size. Please. I want them.

(Did I say infant? I meant adult.)

Rochelle said...

True perspective my friend. Awesome post.

Valerie Strohl said...

Your daughter is beautiful. The first picture is priceless. And rain? Can we have a little here in Indy? #drought

Anna Theurer said...

Sammi--you are just darling. You are such a beautiful fashionista!
Great post!

doozee said...

for sure! all on the company we keep. the children we have. the love and well-being we're blessed with
xx

Leah said...

Interesting. I've found too that most of the people I've met in our local Ds community have not had heart surgery. I've thought it strange since the incidence really is so high. Love the pics of Samantha here!

Anna said...

those legwarmers are AWESOME! We are finally able to open the house up. Its been beautiful. Glad you had great fellowship. It is all about perspective isnt it.

Crazy Beautiful Love said...

Totally agree about perspective and how DS changed it. We are so small. :)

-erin

ethmeu said...

Thanks for the post. It is great. Glad you had a good time yesterday. Thanks for dealing with a rainy Sunday after your rainy Saturday. We were both so happy to meet you and Sammi. She's a sweetheart. I wish she had worn those legwarmers yesterday too!

See you again soon!

lovemy3 said...

It is so true...DS was nothing to worry about when you have a heart defect/surgery looming.

evrfwd said...

Thanks for sharing your weekend with us. I love getting a view into your world. Sammi is so beautiful, her smile warms my heart to no end. And I have to tell you she is the best dressed girl I know! Very fashionable in her own unique way! oxox!

krlr said...

Your last paragraph is perfect. My sentiments exactly.