The Skating Rink

We’re all about adventures.

Starting on New Years Eve. (We didn’t wait for some silly date on the calendar to regroup our family this year and it was WONDERFUL).

So despite a terrorist issue in Rochester on Dec. 31 (sigh), we trekked out as planned to the nearby skating rink for our family’s first ice skating adventure.

Addie has been gliding around the house in her “skate shoes” (Elsa sneakers) for weeks now and was completely in awe when we told her our plan.

If you wanted to fast forward about 10 paragraphs, you’d learn this:

It was an incredible experience in the end. But it took some work.

 

We were toying with over-stimulated children, funked-up routines and the beginning of bedtime, not to mention potential crowds and a new activity. Scott and I hadn’t been on ice in probably 10-plus years and the kids have never seen it other than at a hockey game a couple of months ago.

 

The crowds weren’t too bad and we got our admission and skate rentals with little fuss or delay.

And then the skates.

I feel like one of the many parenting classes they should offer when you decide you want to have children (in addition to Do You Have Common Sense and Don’t Do Stupid Things That Will Get You on the 5pm News) is How to Put Skates on Young Children While Maintaining Some Calmness and Not Creating a Scene.

Addie’s went on relatively easy, especially once I reminder her that she’d be on the ice in a few minutes. She stood right up and was walking in the skates like it was no big deal. Shaking my head, I tell ya, this kid.

But we had some trouble with Zack. Our initial pair we got was too small. He was already in Meltdown Mode after the first attempt and nearly lost his mind wailing on the carpet of the locker room as we waited for Scott to return with the second pair. It’s all good, because we got them on and soon enough, we were marching to the Kiddie Rink like the Jets and the Sharks in the opening scenes of West Side Story. I’m pretty sure we thought we were a big deal, with a bit of swagger and some cocky smiles. Fools!

Scott took Zack and soon realized the Z-Man was not going to do a thing. Not one ounce of balance or coordination and 40 pounds of scrambling, laughing kid in his arms. Addie wasn’t too bad, but just got way too excited and was pretty much attempting a triple axel on her first step on the ice. I was much worse a skater than she was, so our first lap (OK, our first eight) were PAINFULLY slow.

Scott was so worn out from essentially hunching over and carrying Zack on the ice that the two guys took a break. As Addie and I came around the straightaway towards them I saw Scott and the grandmother-woman-watcher next to him interacting and she was waving towards her granddaughter and family on the ice, using a red chair-like device that’s an option for teaching skating.

And she gave us their red chair. She grabbed my hand as I steadied my hand on the wall in front of her. Scott was positioning Zack in the red thingy-ma-jiggy and I was trying not to feel the screaming chant of “Down Syndrome comes to skating rinks, too!” And this stranger patted my hand and said “Your family is beautiful. I hope this makes your night a special memory.”

And then Scott’s back was less sore, Zack was giggling lap after lap and Addie was showing off for the five older girls she had already made friends with. And I was there, the mother of this crazy clan, taking it all in. And trying not to fall down and really ruin the moment.

The craziest part of it all?

That we’re looking into ice skating lessons for BOTH kids.

 

 

 

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‘Love is who we are… “

I am listening to Sara Bareilles’ “Love is Christmas” and “Winter Song” on repeat with giggles in the air and assorted play food on the floor. My daughter offers me a “teapot” and my son is singing random words to the song with a smile on his face.

We are preparing for a wintery coating and a couple of days without Daddy. My heart is content despite the shoveling and the missing I’m about to do.

“I don’t care if it’s gonna rain, our little room is warm and stable…”

*
We shared an amazing belated Thanksgiving celebration with 10 of the best loved ones. Giggles and good smells and gifts and delicious food. People who traveled far and wide just for a few hours in our new home.

We were cramped and it was loud but my gosh, was there love. In chickey kisses and hand pats and camera clicks and bites of yumminess.

“I don’t care if the house is packed or the strings of light are broken…”

*
One of my bestest friends and my favorite 2014 bride, Kacey (the Caboose!) and her hubby Drew came to our house on Saturday for a visit and again, full heart. They trekked up the TurnPike in a torrential downpour but arrived with smiles and excitement. We shared coffee and local pizza and silly games with the kids. We played adult games after bedtime for babies and even shared a glass or two of wine. We watched their wedding video and laughed over how I messed up the bouquet not once, but twice! Addie thought Kacey was a princess and both kids were attached to Drew the entire time. (The cat, too!)

I am so constantly grateful for loved ones who make the effort and sacrifice just for some time in our world.

“All we need is your best my love; that’s all anyone ever wanted…”

*On Sunday, we went to a fun Breakfast with Santa event. I finally located the local Down Syndrome support group, PODS of NEPA, and we were invited to their event this weekend.

We weren’t sure to expect, and honestly, I had to do some convincing to get Scott excited about it at all, but boy, were we surprised.

We walked through the doors of a catering hall 40 minutes north of us and before we spotted the beautiful decorations and centerpieces, the magnets and other 3-21 giveaway items, the kindness of strangers, we noticed hundreds of people. At least 50 families who “get it” or “got it” or are “getting it” just like us.

Babies with almond eyes and adults with kind smiles; verbal and nonverbal kiddos of all ages; talk of aides and school and independent living.

We sat with a family of four — a nine-year-old boy with DS, his 12-year-old big brother and their mom and dad. By the end of the morning, with coats on, we were celebrating their son’s bravery in finally trusting Santa’s lap and exchanging business cards and well wishes and promises of friendship.

I just kept looking around, whispering “Look at this, my love,” to the toddler on my lap.

I watched little Alex stroke his Mom’s cheek with a piece of hair he pulled from behind her ear and told her how Z-Man does the same thing to me. We shared one of my favorite smiles and a nod.

And while Zack was quite happy to meet Santa, Addie was not so pleased — at least not until the snowman character picked her up for a few minutes. Sorry for crashing your photos, other kids! She tells us on repeat still:

“Addie cried… I just wanted to see Snowman… Snowman said ‘hi’ to me…”

Even after five goodbyes, when I spotted Alex’s mom in the lobby on our way to the car, I went in for the sort-of-creepy-mom-who-needs-to-get-out-more hug. And she hugged me back tightly. And Scott and I both keep saying how we feel much less alone now.

“I’ll be your harvester of light and send it out tonight so we can start again…”

I think as I get older, it’s not that I realize what’s truly important — it’s simply that I appreciate it all — the good, the bad, the easy, the hard, the dreams and the surprises.

Even something as simple as a makeshift tea party with a snowman-phobic little girl and her hair-petting big brother is an absolute treasure.

We have more Christmas carols to sing, snuggles to snuggle and traditions to turn into memories.

My life is very good. My life is filled with love.

StapleHead and some snippets

We’ve had a lot of sweet nicknames for our daughter throughout the past two-and-a-half years: Girly Girlz… Raddison/Baddison/Maddison/Saddison… AddieBugs… and now, StapleHead.

StapleHead is a recent addition to our quirky Addie nicknames. It all began Friday morning when Addie’s head may or may not have had an unfortunate run-in with the corner of trim in our living room doorway. A mother’s worst nightmare — you pick up your screaming daughter to console her and see the blood drops on the floor and feel your hand is wet from where you were petting your daughter’s hair.

Fast forward to Scott making it home in a record eight minutes and getting ourselves acquainted with the nearest Urgent Care and voila! — three staples and a little girl running around saying, “Doctor fix my hair” and “I had fun on my adventure!” and “Zack broke my head.”

She’s totally fine and I’m grateful Scott takes her for staple removal on Friday and not me.

I knew she’d be the one to give us an emergency room visit that involved blood first, but I was at least hoping she’d wait another few years. (Or that Scott would be with the kids and not me, haha!)

*Zack has learned how to open his bedroom door!
Hooray!
And end hooray! It’s getting really old already!

He opens it all the time. During nap time… Creeeaaaak! Middle of the night… Oh, just sneaking downstairs and eating some Cheez-Its on the couch in the dark. Early morning visits to Momma’s bed with shrieks of “schnack!”

* We have turned into Skype-aholics! Scott kicked it up a notch by somehow connecting our video streams to our 42-inch flat-screen TV. We tested it out with cousin Becky and her family and the kids got a kick out of seeing their cousins’ guinea pic on the wall! We’ve also recently Skype’d Gammaw and Pappy. Send us a Skype invite and I can promise you dancing stuffed animals and Addie asking you to come see her new room. Zack will most definitely dance, too!

* It’s the month of being thankful — and giving back, too!
We’ve donated some toys to local charities and just gave two boxes filled with non-perishable food items for a Thanksgiving food drive. There’s a thousand people in your community who probably don’t have loved ones to visit or a turkey to cook next week. Let’s help them out, right? And if you’re doing online shopping, see if you can help a charity while you shop, like Amazon’s Smile. (We support National Down Syndrome Society through them!)

I’m also focusing on starting traditions this year with the kids. Things that will become more important than any gift you can unwrap on Christmas morning. Making snowmen and tasting hot cocoa and watching A Charlie Brown Christmas and making handmade treasures for those that love us.

We’re hosting Thanksgiving again this year and we are most looking forward to a large enough kitchen for cooking a large enough meal. No more cramped counter problems!

And in even snippier snippets:
– Addie’s record counting is 1 through 14. Her favorite color seems to have moved away from purple — perhaps green or yellow? (“Geen” and “Yeh-no”)
– Zack has started saying unsolicited “I love you”s to me. Happy = understatement. He also is starting to tell me a little bit about school after bus drop-off each day. Today, I caught “Joanie” (his teacher) and “play friends” and that works for me!
– Scott finally has more help at his store! Fingers crossed this means a near-future end to six-day work weeks and a good bulk of his stress!
– My photography biz is kicking butt! I have a mentoring session at the end of this month, have had some very successful recent sessions AND am getting a new camera and lens any day now!

Alright, duty calls! There is PB&J to be made and snuggles to give and laundry to fold and put away and crocheting to complete!

Have a great week!!!

Under all that blue fur

My Momma Heart melted a bit again today.

It does this now and then — just lets loose and opens up and all the worrying and holding my breath and doubting myself laughs as the giggles and happy tears and smiley-round-the-mouth wrinkles spew from my heart.

Zack had his Halloween parade this morning at school.
I was hardly expecting it to be a crucial moment in his childhood. In fact, I was just counting it as a plus that the Cookie Monster hat was on his head for a solid ten minutes before school. Progress for a family that learns that sensory issues creep up out of nowhere, especially around a holiday geared towards itchy outfits and overwhelming sounds and feelings. He hopped on the bus and was holding hands with a SpiderMan when I waved good-bye.

So I chugged some coffee while picking up tufts of blue fur on the kitchen floor, scooped up Addie (who the night before had thrown her Elmo head into the garbage, causing Momma to search for an hour last night and some this morning before she just told me where it was. It’s been cleaned and is drying on a ceiling fan.) and off went our family of three (bonus Happy Momma points for Scott getting out of work super early today!) to Zack’s school just a few miles away.

There were dozens of parents and grandparents and siblings spaced along a downhill driveway’s fence on the property, phones out, cameras out, leaning further and further onto the concrete as 10 a.m. neared and most definitely ignoring at least half of what one administrator was saying before the parade.

And then, a commotion that can only come from 30 pre-school-age kiddos in costume attempting a single-file line outside of their building and routine.

Zack was one of the first ones, standing next to another Cookie Monster (doh!) and holding the hands of one of the school’s aides.

The hat was on… SUCCESS!, I thought.

And almost predictable, our quiet, observing boy came closer. One hand was fidgeting with the strap on the hat under his chin. And then, a wipe of the nose (classy, boy!) and you could almost see him pull his shoulders up with a mental pep talk as he trudged along, looking at the crazy cheering adults along his path.

And then he spotted us.
Oh, the smile he had. It was like everything changed. The hand at his face went down. The smile stayed. He was about five feet past us when he turned around, nearly dragging his aide down, and said “Hi, DaDa!” and waved.

The families were gathered by corresponding class outside at the playground (quite the feat when you have a two-year-old sibling antsy to try out the slide) while the students were nestled inside with a Dora episode and a special treat.

When we got inside, Zack was near the front, sitting on a little stool with an aide rubbing his back and helping him with his drink. The hat was off, I noticed, but more than that, I was able to just observe.

He was a bit antsy but stayed in his seat the entire time as the teachers and aides took turns helping him out and talking to him here and there.
He was a good boy, I saw. Happy Momma.
He needed a lot of one-on-one help. Sad Momma.
He’s happy. Happy Momma.
They love him, you can see it. Happy Momma.

We watched for a while and then had the chance to meet two of the aides, who just raved about The Dude (I bet you tell that to all the Halloween Parade parents, I thought) and then, a great conversation with his teacher, Ms. Joanie.

Joanie told us things like “great speech” and “so smart” and “I can tell you have worked so hard” and I had to look away because these tears just welled up inside of my throat and I had to concentrate on the paper cup in my hand and Zack’s soft Cookie Monster fur to keep from falling apart in her arms with “Thank yous” and “you don’t know what this means to us.”

Under all that blue fur is one-third of my family. One-half of my children. 50 percent of the best thing I’ve ever created. Under all that blue fur are so many of my worries and so very many of my smiles. The calm, sweet, huggy boy that makes everyone in a room chin up and cheer up with a single unsolicited smooch.

I stressed the most during our move about finding the right school for Zack. And I have no doubt, after just an hour stolen from their days and days of hard work, that we found the perfect place. He has grown in so many ways just in the seven or so weeks of bus rides and letter show-and-tells and notes on yellow-lined paper back and forth.

If it’s just for that hour or for the rest of today or this week or every time I think about my little Cookie Monster or for the rest of our school year or the rest of our lives, they have given us hope and knowledge and tools and love.

I speak often about “Welcome to Holland” as the greatest analogy for having a child with Down Syndrome. And every now and then, I am so grateful that all the tulips and windmills and Rembrandts came our way. Because under all that blue fur today, is my son, struggling with all of the very real issues any mom of any four-year-old deals with — tantrums and nap times and diapers and not sharing with his sister. And under all that blue fur are the many lessons he has brought to me and the many ways he has made me a better person.

Under all that blue fur today is an incredible love that I wish everyone could experience and understand. It’s the most beautiful thing I’ve ever known.

Tomorrow is the last day of Down Syndrome Awareness Month. But knowledge must always continue. Questions can be sent directly to me or you can visit the pros at http://www.ndss.org, one of the best sources of information out there.

Consider a donation to help The National Down Syndrome Society continue their incredible work for research and advocacy or stop by their website every now and then just to learn a little more.

And I feel the need to say a might thank-you to the many people who love our Zack and our Addie and bring us warmth and support and kindness.

I am so grateful for our little world, currently lined with blue and red tufts of fur. And a heck of a lot of love.

I remember and I forget

This weekend is so lovely.

It’s my first Memorial Day weekend that I haven’t had to work in my adult life. I’ve got two great little kiddos who are begging me for the outside time we all love. The worst of the yard work is complete so afternoons and days aren’t completely lost on back-breaking work.

And that sun, that air.

I’ve felt it before.

 

 

20 years ago, my Memorial Day futures were tarnished.

I went to school on the last day before a long weekend at the end of fourth grade and my sick mom was especially weak. She couldn’t get out of bed that morning and spent such a long time with her goodbyes and handholding I thought for sure I was going to miss my bus. I was 10 and she was 46. I pulled myself away to join my friends in the school bus stop out front.

I wonder if she pulled herself out of bed to look out the window. I never looked up to see.

I don’t know if she cried or if she wore a brave face.

I don’t know when she called her sister.

I don’t know if she knew in that moment the truth about Memorial Day.

We try to remember, we sometimes forget.

 

I never saw my Mommy again.

 

I came home that afternoon and saw cars in the driveway that meant she was in the hospital.

I stopped at the second-from-the-top step with a sigh. I was so sad I’d spend another weekend visiting her while she lay in a hospital bed. I was so sad for my Dad and the way he looked at her picture on the dresser the mornings she wasn’t home to cook me breakfast.

I was mad, too. That moment was my first memory of rage. I stomped my foot on the sidewalk. I HATE THAT YOU’RE ALWAYS SICK, I wanted to scream.

 

I saw my first rainbow that weekend.

It was her goodbye perhaps.

 

By the end of the long weekend, I came home from a friend’s house to find my Dad sitting on my bed in our apartment, crying while holding stuffed animals. I had never seen him cry. We were supposed to see Mommy in just an hour.

I don’t remember how he told me she was gone.

I just remember feeling like I had to be a Mommy to him.

We held hands and took a walk down the road.

 

By the end of that long weekend, I stood in front of her open casket in a stuffy funeral home, torn between playing tag with some cousins and this nagging feeling that this was something so big. I couldn’t grasp it with my 10-year-old heart just yet.

On a warm, sunny, slightly windy day, they lowered the box into the ground.

 

I left school five days before with a sick mom at home.

And that first day back, on a bus for a field trip.

Charlie in my class chose that day to remember my mom was born on Leap Year. She’s only like 11!, he said!

I sunk down in my seat and hated Memorial Day weekend. And field trips. And boys named Charlie.

 

I’ve spent two-thirds of my life without her.

I relate better to being motherless than being mothered.

I’ve spent nearly four years being a mother myself.

And this quandary I find myself in is as complicated and confusing as it gets.

 

I look at old pictures of her and me and now my eyes just as easily land on the resemblance of my daughter to me as anything else.

There is hurt and peace and anger and love and they come and go in waves and go ’round and ’round in cycles I can never predict.

There are Memorial Days that cause my heart to ache and others that go by quickly and busily with little thought. But May 26th still makes me stop in my tracks. Can’t catch my breath. Can’t believe it all over again and again and again.

 

There are purple and yellow flowers scattered across our better-loved yard now. I hope she likes them.

I hope she watches her grandchildren. I hope she comforts them when I cannot.

 

I am 30. She would have been 66. A grandma of two. a mother-in-law to Scott.

Would she be on FaceBook? Still send out those long handwritten letters in the violet ink? Maybe a call once a week.

 

I look to the sky. For her rainbows and that sunny end-of-May warmth.

I run my hands in the earth of my gardens and sing to sleepy toddlers and feel her arms around me again.

 

I remember but I also forget.

And I miss her just as much 20 years later.

 

Nancy Carole Dowhan

Feb. 29, 1948 — May 26, 1994

 

Baby wendy with Mommy Little Wendy - with Mommy

The year that was…

… a journey.

… an adventure.

… throat-clogging lows.

… heart-pumping highs.

It was the year that was understanding. And acceptance. Both long overdue.

Where small triumphs yielded loud, triumphant applause.

It was the year that was risky. Whose risks brought rewards. And peace. Risks that showed us who we were and taught us never to think we were at where we were going to end.

This. This was the year where “what if” was brought up once, maybe twice, (and maybe 200 times) as we contemplated expansion and the future of our family.

There was loss. No more travel logs from Asia, but still I hold tight to the memories. The memories, the photos, the love and all those newspapers from places far away. The last stares at a nephew in his first swim, soaking it all in.

And then, as that circle of life will do, after loss came growth. A positive test, met not by the excited screams we had two years ago, but instead the hold-your-hand-through-this-roller coaster embrace; the in-it-no-matter-what familiar kiss.

It’s been a year of risks. Because that’s what you do when you start seeing all of your rewards, your blessings, your gifts… you thank your lord, you cross your fingers, you hold tight to faith. Take two deep breaths, wink at the one you love and jump into that deep end.

Because the good stuff is hidden.

Because it’s buried deep beneath everything else you’re too busy seeing.

It’s there.

And we found it, slowly but surely, this year.

No one knows what 2012 holds in store for us all.

If we’re really, truly, unbelievably lucky, there will be a little brother or sister for Z-man. There will be tiny fingers that won’t stay small all that long. There will be long, exhausting nights and days and definitely a lot of laughter. Because that’s how we roll ’round here.

2012 is a mystery. But it wasn’t so long ago that 2011 was its own little secret.

And I’m almost sad to see it go.

But so ready to put my hands up in the air and feel a fast breeze roll through my fingers. I’ll close my eyes tight and then I’ll be a brave lil girl and open them up wide so I can watch every second of the ride. And I’ll smile a time or two when it’s all over, amazed and proud that I made it; that I even attempted it.

One day at a time.

Ready? We’ll do it together.

Here we go…

Ho, ho, ho… and going home

We survived Santa and now it’s time for holidays and home. A symbolic trip, me and my carpenter husband traveling with an unborn baby (and hopefully a sleeping big brother in the carseat) through Bethlehem (PA) in the middle of the night at Christmas time on a journey to our homeland (OK, the place where a lot of my family lives now) for finding the true meaning of Christmas. (And to lose Z-man to a plethora of kisses and snuggles and gleeful big-cousin games).
We leave for Massachusetts and New Jersey Christmas night and will be back in time to ponder the last year and plan (but not too much planning) the next one.
May you find the meaning of your Christmas and ponder the past just enough to get you excited for the future. And may there be kisses and love.
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