‘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.

Snippets — On “new”

There’s a lot of “new” among us nowadays.
We spent a lot of time in our “old” planning for this New but really, we had no idea and yes, yes it was worth every minute of excruciating, stressful waiting.

Here’s a peek.

On Our Home
I love this place.
I could end the blurb right there, but let me tell you — I love it so much and for a thousand reasons.
This place is our home already, not just a house. I have such a large kitchen that I am constantly feeling like I get a workout walking from the stove to the sink and back to the stove. It’s just a terrible problem to have, geesh. But seriously, it’s exciting to cook dinners here and bake desserts. It’s the location of our back door, so the hubby walks through it every night just as the kids are getting on my last tiny, itty-bitty nerve and only milliseconds after I have somehow managed to put the house back together again after we’ve spent all day tearing it apart together.

I have my own (giant) laundry room with two brand-new appliances that sing songs when they’re done with a cycle and calculate via a little Robot Dance how dirty those clothes really are — it’s the little things, I tell you.

When I was in the house those first few days cleaning and prepping for boxes and furniture, I CONSTANTLY got lost upstairs. No, seriously. I would walk out of Addie’s room and turn left when I should turn right. And at least twice I nearly toppled down the stairs after a wrong turn.

So what that both bathrooms are set up in such a way that you have to sit sideways on the toilet when you pee so your knees don’t hit radiators — we have two full bathrooms!

I have an office to work out of, even if it’s become the last room to unpack. I may or may not be typing this with my feet propped up on a box of Mary Kay products.

Since Zack has begun school, Addie and I have started a routine of waiting for his bus on our enclosed front porch. I sip my coffee or guzzle some water, she reads her Elmo book in her Dora chair and a light breeze comes through the windows as I gaze about our street, taking in the neighbors and cars and houses and all that.

I even like our tiny yard and am grateful for the tiny amount of time it takes to mow now — and am so, so grateful there are no hills or steep slopes. I am planning next year’s herb garden and am on the hunt for some Autumn mums for our front.

There are New House cards on the counter, a new welcome mat with our last name leading out to the front porch and new coffee K-cups in the cupboard. Thanks, y’all.

Pat the Neighbor

On the night of our official move in to the house, we thought our cat Rocky got out of the house somehow. I was so upset and was trying so hard to not let it put a damper on such a special day. Scott and dog Izzie and I finally took off on a dusk walk around the neighborhood. About three houses up the one street, and a pleasant middle-aged, hard-working-and-you-can-tell-by-looking-at-him man named Pat introduced himself to us, helped look for the cat (which turned up inside the house, hmrph!) and spent several minutes talking to Scott about the neighborhood and neighbors and his time (35-plus years) here.
A night or two later while returning from the nearby park with the kids and there was Pat, waving to us and saying hello to us by name.
I was struggling with an old-school push mower my Dad gave us the other afternoon and Pat came out in his Steelers jersey, shook his head and wheeled his personal mower down to me.
“This will be easier,” he said. “Game’s on; I gotta go.”

For being only a few miles down the highway from Wilkes-Barre, a relatively large city in Northeastern PA, we feel like we are in quiet suburbia. Dogs are walked and kids go to the park and bicycles whizz past the house and the mailman walks down the street and makes sure your front door is latched every time she drops off a package. It’s relatively quiet and our location is incredibly convenient. We’ve discovered a handful of parks and attractions and events and are so excited to continue our exploration of the area.

Zack’s (second) First Day and Addie’s Still Crazy
Z-Man started at his new school this week and of course, did not disappoint with his adaptability and strength. He gets picked up in front of the house in a van with anywhere from four to eight other kids already on board and gets whisked away to his school, only a five-minute drive from our house. His school is a reverse inclusion classroom-type program (half special needs children and half “typical” children) and is the perfect blend of the two programs he was in last year. There are therapists on site, a new sensory program, focus on his IEP and a foundation based off of Montessori teachings.
On his second day, he grabbed his backpack on the front porch and said, “Momma, school bus!” and we marched to the white vehicle. I opened the door and he hugged my legs for just a few seconds, looked up at me with a smile and hopped inside with his friends. When he came home, I asked how school was and he kept saying the words “happy” and “friends.”

His time at school gives me and Addie some “Girl Time” and I am enjoying that, too. She’s talking so much and coming up with the most hysterical comebacks and responses. She just keeps me laughing so much of the time. And shaking my head.

We can’t keep her hair looking good for the life of us. She’s always rolling and running and braids fall out and ponytails sink down and bangs are constantly in her face. She makes a face when I put her in a dress and yet sprints to the nearest person and says, “Look, ___, Addie so pretty!”

She requests “Elmo” (Sesame Street) almost daily now, and happy to relive my childhood, happily DVR episodes for her. Every time, she points at the TV during the credits and yells “Where Elmo go?” even though she knows very well he rides in on his tricycle about ten seconds later.

She has become our pickier eater, or perhaps Zack has just started eating so much more now, but either way, dinner is always an adventure.

Him
I’m more in love with my Scott when he’s in his Daddy Zone than any other time or place or circumstance.
He walks in the door from work and I basically shoo him into the living room to play with the kiddos. They are instantly all over him, giving hugs, offering “teapot” (Addie’s version of a tea party) and requesting books to read and wrestling together.
But it’s his bedtime rituals with the kiddos I adore most.
Last night, I hovered around a corner in the hallway, two sippie cups and two diapers in my hands, frozen. I had been coming out of the laundry room when I heard him in Addie’s room, doing a role call of all of her animals.
“And who’s this?,” he asks her.
With a giggle, she tells him.
They go back and forth like this through all eight or nine creatures.
He does this to make her feel comfortable and to let her know she is surrounded by love as she goes to sleep. But she doesn’t need any of the Guppies or the bear or even the puppy blanket. Her Daddy showers her (and Zack) with love.

Scott and I are better than ever. It’s back to basics.
Hand holding and driving adventures and silly jokes and showing the other person you care.
He’s been patient with my need-this-for-the-house list and has put up shelves, hooked up electronics and nearly singlehandedly moved large furniture.

I’m happy for where we are, literally but also this very figurative place, too.

We are in a happy place that needs no address.

Snippets- Vacation Edition

We had ourselves an adventure — just me, Zack and Addie (Da-da had to work).

 

We crossed five states for four different visits in about 10 days and 20-plus hours of driving. There were chickey kisses and ocean waves and everything in between.

Some highlights:

 

The most relaxing, heart-warming time sitting in Chochie’s yard watching kids frolic in dirt, hide treasures in secret corners and splash to their hearts’ content in a bright blue bird bath.

 

Snuggles nightly with two tired ones. Holding them close and re-learning their breathing and sighs. Watching little hands and fingers as we all fell asleep.

 

Addie greeting me every day with, “Good morning, Momma! How did you sleep? Addie wake up!” You can’t help but start your day on a positive note with that.

 

At nighttime, I would remind the kids of what we did that day — who we saw, where we were, etc. One night after a 4th of July picnic at my Dad’s and plenty of big cousins to play with, I asked Zack what was his favorite part. Typically, he just repeats “favorite part” with a smile. That day, he grinned a huge grin and said, “Play with kids!” How sweet.

Another night, Addie interrupted me with, “I so happy, Momma.”

 

I learned all of the words to one of the songs from a DVD we brought with us for the car time.

“I’m not ready to be a princess, I don’t have what it takes…” The kids and I can rock it out. “I look bad in crowns…!”

 

Cousins Ryan and Kevin in Massachusetts always dote on Z&A. It’s so amazing to see their love for their little cousins. They introduced the kids to some of their old toys, and a baby frog and the beloved guinea pigs, which are a HUGE hit. (We actually have to tell Zack the piggies are sleeping quite often or else they get no break from their noisy visitor). Addie snatched snap peas from Becky’s garden and took charge on a walk around the neighborhood. Cousin Mark was welcomed home from work with two squealing “hewwo”s from little people. We all laughed at Addie’s love for pickles and Zack’s sweet tooth, but mostly we just laughed.

 

Seeing my Dad and Uncle “Brick” together was so great. They are two peas in a pod. I love them both so much for their humor and kindness and compassion, wrapped up in tough-guy exteriors. Crazy fun watching them drink beers and blow bubbles with the kids on our last day.

 

My friend Nicole and her man Jeff have created a beautiful life together and just seeing her, with him, in their cozy and cute home was a delight. They’re still collecting the Cheerios we left for them in every crevice imaginable. Truth or Truth with wine until 3am was simultaneously the best and worst idea we had, haha!

 

At the beach, the kiddos surprised me. Zack went straight for the water and couldn’t be removed without major coaxing and Addie was quite content to play in the sand and sprinkle water (fetched by Momma every three minutes) from her watering can onto my toes.

 

 

There were a lot of quiet moments that made every traffic jam and long walk worth it:

The ringing laughter in living rooms and on patios and in the car;

Both kids saying,  I love you, Momma.”

Having a chance to disconnect from the rest of the world and just observe. I learned much about the babies in these 10 days.

The love and hospitality of our many hosts, who dealt with difficult bedtimes and early-mornings and sometimes my need to just stop. I appreciate your open doors and open hearts.

 

 

This was an amazing adventure.

I just love adventures.

 

 

 

 

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Lil snippets

***

Addie’s counting goes something like this:

“1…2…4…5…” It always ends with a clap.

 

***

The other morning I went in to the kids’ rooms (separated by glass French doors) and found Zack sitting next to Addie in her crib, rubbing her head and giving her kisses and saying, “It’s OK, baby, It’s OK.”

Now THAT is a great start to your day.

 

***

 

I’ve returned to writing. Very minimally.

As a freelancer for the Life section (human interest/features) of the newspaper where I used to work.

My first three stories are under my belt.

It’s good to be back.

 

 

***

 

A couple of weeks ago, I took a last-minute trip two hours away with a friend. And came back with a soul sister. The reasons were not what I wanted — I mean, I’d much prefer a fun story about Chip ‘n’ Dales or a few shots of tequila. But 11 a.m. margaritas and deciding who the man in the relationship was is almost just as good, maybe better.

Where’s the parking garage?

I brought a notebook!

 

***

 

Whenever Addie is stuck (which is often because she is a little monkey), she proclaims, “I SUCK!!!”

I can’t tell you how hard we laugh at this one.

“Oh no, Addie, you’re very amazing. Oh, you’re so smart and lovely.” Tears streaming down our face.

“I SUCK!”

 

***

 

I love our “other daughter” Aubrey more than words can say. She visits with us once or twice a week and she is like part of our family. (Also the most well-behaved child, haha!) I love her witty sentences and exclamations and the way she dances with Zack and converses with Addie.

 

***

 

Zack made a friend named Lily at his school when he first started in August. Lily first met me while I waited for ZMan in the hallway. She looked me up and down and asked who I was and I was so taken back by this tough lil lady that I had to laugh.

“I’m Zack’s Mommy.”

Zack’s not ready, she said. I’ll tell him you’re here.

I looked for the camera and the Candid Camera crew. That’s funny, I thought.

And she did bring him back, leading him by the hand and helping him put on his shoes. I’ve seen them hug and she always says goodbye to him when I pick him up at lunchtime.

Then a few weeks ago, I was waiting for him and she was in the hallway.

“You know, Zacky’s my best friend,” she told me with a smile.

“Really? That’s so nice. How come? What makes him a good friend?”

She thought for a second. “Well, he pushes me sometimes, but I push him back. I love him.” And she marched off, leaving me crying in the hallway in a moment that was much grander than a four-year-old’s from-the-mouths-of-babes moment.

Lily is off to a Big Girl School while Zack stays where he’s at for another year. And I’ll miss her. She is, for however long or however little, Zack’s first self-proclaimed best friend in a world that I thought would be too mean and too hard.

And she still asks about him. Her Mommy wants to set up a surprise playdate for the kiddos. I can’t wait.

 

***

I’m taking the kids on a grand adventure starting tomorrow. We’ll be visiting four stops of friends and family in NJ and MA. There will be beach time and lots of photo-taking and hugs and chickey kisses hopefully a glass of wine. I’m excited for our our first little vacation this year. I’m sad Scott can’t make it (because of work) but am so grateful for the life I’ve been given and the opportunity and love and how all the doors that have closed and opened have led me to this overpacked car.

 

***

We partied like it was… 2012?

We had ourselves a lil birthday shindig the other day.

In honor of a lovely two-year-old and her and her family’s journey.

There was (eventually) sunshine, friends and family fluttering about the living room and yard. Lots of catching up, some new friends and a happy momma with a very full and happy heart.

Thank you to those who traveled hours to be a part of our celebration; thanks to those who gave our lucky little girl some new clothes and toys and books; and a thank you to those who sacrificed things they should have been doing or wanted to be doing to be a part of our girl’s day.

 

I still can’t believe she is two.

Two going on 16.

 

Addie, you are loved!

 

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Letting it be and catching up

The older I get and the more life experience I have under my figurative belt, the more I learn that my biggest fault may just be how hard it is for me to just let it go.

If I don’t get home on time from work, I have a very understanding husband at home who appreciates my hard work and time away from my family.

If I think a negative thought regarding Zack’s Down Syndrome, I’m human, not a monster.

When Addie got her first boo-boo on my watch, it’s so wonderful that her Momma gets to kiss it better.

I’m working on it. I went through a few weeks recently where I took everything more to heart than I should have; allowed little things to bother me as if they were the end of the world.

So I repeat to myself every time I feel the urge to blame myself for poverty, hunger and civil wars… Let it be, let it be, let it be…

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* * *

In the days before their wedding, our dear friends Ryan and Ruby asked me to fill in as a photographer on their big day when their hired help left them stranded. I was honored that they thought my photography skills worthy of some of the most special moments in their lives together, but I was also incredibly nervous and unsure of my abilities.

But, alas, a “let it be” or two and there I was, early for the first time in my life, testing outdoor lighting, admiring brick pillars and wood walls and the love between a really lovely group of people.

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Ruby has been more than patient with me as I wait for my final package to arrive so that I can present it to them, hopefully next week, and so I was hesitant to share too many photos, but what the heck… Let it be.

I was able to capture some of the pre-ceremony moments between Ryan and his groomsmen (including my handsome hubby) and also some of Ryan’s family. The laughs shared between friends, the doting look in his parents’ eyes, the immense pride that was at this location… it gave me a sort of adrenaline high that I can’t explain.

And then, perhaps my favorite moment of the day: Ruby really wanted a photo with Ryan before the ceremony, but didn’t want them to see one another. We had only a moment or two, as we were already running late (tee-hee!), but we perched each of the newlyweds-to-be on one side of a large brick pillar outside of the reception room. The early evening light was streaming in the glass doors behind them and there, as I clicked away and played with settings, Ryan and Ruby grabbed each other’s hands and both smiled simultaneously. It was as if they had each found their peace. It reminded me of the love and peach I’ve found with Scott every time our hands meet. And then, I felt almost as if I was intruding as Ruby started praying, in a low voice that only Ryan and myself could really hear. It was so sweet and moved me so much that I decided I had captured the shot and put my camera down. I had to hold back tears.

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It was a fun evening — a little edge, a little rock ‘n’ roll, some s’mores and so many laughs and memorable moments, most of which I think we’ll just keep to ourselves.

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* * *

There’s a new baby in town.

Our friends Reva and Bret (parents of Zack’s friend Owen) welcomed their baby girl, Ella, into the world just a few weeks ago.

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Ella’s a tiny lil round thing, especially compared to her big brother who was large and in charge from the day he was born. She looked a lot like Owen did when he was a newborn, but on my second visit with them the other day I saw a lot of her own unique looks coming out more, and some of her Mommy and Daddy, too.

Reva and Bret seem to be adjusting to two kids really well now and as much as I love seeing Reva with her little girl, there’s nothing quite like a big brother doting on his little sister. (I know this from personal experience)

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We’re already hoping Ella and Addie are friends when they get a bit older — Girl Power! Of course, that all depends on Addie keeping her paws off of other girls’ headbands.

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And more adrenaline rushes to come — Reva asked me if I would take photos of Ella and then of their family in about two weeks. Hooray! I’m so excited to capture more exciting life moments for people I adore so, so much.

* * *

September is going to turn out to be Wendy and Scott Bring the Love Back Month. Not that things were absolutely horrible, but rather we just haven’t been putting each other first. I never wanted to be that Readers Digest article, but yes indeed it is hard to keep your relationship first when you have time-sucking jobs, therapies, two kids, five animals and a mortgage payment.

We started the month off with our Date Night at Ryan and Ruby’s wedding. It was our first overnight time away from the kids, EVER. We have never, ever taken that much time away from them. And that will only be the record until next week when we visit Richmond for two days for our anniversary. And later that week, our friend Ben’s wedding.

We are both trying to do more thoughtful things for the other person — you know, those sweet little gestures you do when you’re first together. I do dishes, Scott buys me M&Ms… mmm, life and love is good.

We also watched the movie Fireproof together the other day, which was recommended to us by Ryan and Ruby themselves several years ago (life really does come full circle, I tell ya). We’re also reading a chapter from the accompanying book, The Love Dare, each day, too. It encourages us to be more proactive about being thoughtful, selfless, polite, calm, etc. You know, the old Love is Patient, Love is Kind… one day at a time.

At our wedding, we even played one of the songs from Fireproof as a peaceful, reflective moment during our ceremony.

Love is not a fight, but it’s something worth fighting for…

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* * *

And our babies, oh our sweet babies.
I know nothing is as cute as a photo of them or stories about them, so enough about all this serious stuff!

They’re doing amazing.
Addie just turned four months old yesterday. She’s rolling back and forth, stomach to back and back to stomach and holds her head up all the time. She tried cereal for the first time yesterday and the jury’s still out on it. Her hair is getting longer and crazier; it skims her eyebrows in the front and the girl’s got sideburns that can rival Elvis’. She wakes up happy and smiling, grabbing for her pants or sleep sack and reaching as high as her thin, long arms can reach.

I’m still searching for the perfect ratio and balance, but I think I’m getting pretty close.

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She loves her brother, I’m certain of it. When he comes nearby her, no matter her mood or location, she twists and turns her body to get him in her sight, a huge smile framing her face. She even puts up with the few stray trucks that find their way to her poor head and the way he practically sits on her, just eating up her personal bubble.

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And Zack checks up on her pretty frequently. He still calls her “Ad-da” and comes to her rescue anytime she starts crying or anytime someone is holding her. He seems very protective of her now and hardly pokes her in the eyes at all.

Zack’s doing so, so well. His physical therapist, Miss Kathleen, was just here and confirmed that he has officially reached her two-year-goal of rolling, crawling, sitting, standing, walking to play. He’s half-running now, really. He understands how to get to the car and will walk there while holding my hand on our way to a playdate. He climbs up the stairs while holding on to the wall and understands directions like “go to Zack’s seat” at mealtimes. He babbles quite often and we’re able to pick up on a few words here and there. He proclaims Da-Da so proudly and excitedly. He’s a little Daddy’s boy and I’m alright with that; it’s beautiful to see Scott’s love for his son. Zack is swinging bats and walking while throwing balls, making baskets and reading books. He’s feeding himself using a fork or a spoon and has some groovy dance moves (he gets those from him Momma). He climbs on everything — like the dining room table last night (Don’t worry, we got a picture!).

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No matter what happens with all of these photography opportunities (Nicole says I’ve caught the photography bug), my favorite subjects are still the blue-eyed loves I come home to every night.

So I’m letting it be, and sometimes that means not forcing myself to write a blog entry and not always publishing the ones I do write.

Letting it be is whatever works for you, whatever brings you your peace.

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Thankful, jingle-jingle

It started. The listening-to-Christmas-music-before-Thanksgiving thing. The older I get, the more I seem to find my inner Santa Claus, my inner Christmas lover. Even if it means money and stress and snow. Because it means happier things, too. The holidays mean family, noticing the everyday things on special days and sharing laughter and lots, lots, lots of love.

So who cares that it was 60 degrees the other day, with the door open and an Autumn Fruits candle burning on the mantle while I danced along with Zack to “Rockin’ Around the Christmas Tree”?

I have one more day of work and then a few days with family near and far, family via in-laws and steps and everything in between, but beautiful, beautiful family nonetheless. Scott and I have hosted Thanksgiving for several years now, since the first year we lived in our home and Scott forgot to take the guts out of the turkey before putting the bird in the oven. We’ll have his parents and grandparents and my parents and niece. I’m beyond excited.

Before the relatives, I’m having time with my other family — the moms and their babies that I hold in the same place in my heart that I hold Z-Man. There’s been a lot of that lately, especially with Owen No. 1.

These two have such a bond. I hope they are lifetime friends.

Well, that goes for all of our lil friends… Hailey and Chase and David and Owen2 and Lexie and Olivia and the friends still to come (Big Shout Out here to my dearest, oldest friend Allison who is going to become a Mommy this week. I love you!)

Z-Man is pushing himself and is accomplishing so much lately. We’re having one of those moments where after all of our waiting, after we reach the point where we become frustrated with the plateau, the waiting, the delays… BAM. He smacks us in the face with holding his sippie cup on his own, standing up like a brave, brave boy and taking cautious steps toward walking.

I no longer worry whether Zack will learn to walk. I hold on for the ride of my life, patiently and with muted prayers on my lips, but I fake the confidence the best way I know how. I don’t cry for him as much; I laugh with him more, two of us in belly laughs with scrunched-up noses.

He will be a great big brother.

And we will always have these moments — the petting of cats, the eyes reaching up in curiosity, legs standing stiff and strong.

We aren’t just thankful this week, but it’s nice to be reminded once in a while. To focus once in a while. To have someone stand up, even if you hear a diaper scrunching when they do so, and literally or figuratively smack you across the face with a smile.

“Wake up, silly! There are Christmas songs to listen to and dance to and friends to play with and imitate and tell secrets to and a heck of a lot of smiling to do. Won’t you smile with me?”

When your future walks by

I have two modes: strong and weak. There is no in between and both are contrived entirely out of my own beliefs in how I should act or think or how I’m expected to handle a situation that comes my way. So when I let down my guard or show my emotions, I am weak, plain and simple, in my mind. I know that’s not the case and I know it’s only human to not be 100 percent strong 100 percent of the time. But pre-Mommy Mode and post-Mommy Mode is like night and day.

So the other day at work I quite literally saw my future walk on by, right in front of my unsuspecting self. I was standing outside the resort when for some reason, I felt inclined to turn around in the other direction. At that exact moment, I saw 10 seconds of a mother’s day-to-day life. The mother of a son with Down Syndrome. Her son was tall, thin, smiling a large smile, but clearly impacted greatly in several ways by Down Syndrome. He was hesitant about the stairs in front of him, confused about where he was heading and staring excitedly and innocently at the world around him, noticing the flowers in neat rows, the cars being parked nearby, the people standing on the porch. And his mother, graying hair, tall herself, reeked of patience and a heart that is still not whole. She guided him, one hand on his arm, talking to him even though he was much more focused on the task at hand. She looked at him, seeing 20-plus years of moments like this and 20 or so more to come, the two of them never to be equals, she always being his leader.

My throat hurt, my eyes filled with tears.

And as quickly as I started feeling bad for myself, I felt horribly unfair to Zack.

We don’t know what Zack’s life or abilities will be like in 20 years or 20 months. We don’t know what we’ll be like as parents at that time or what other obstacles we may have between now and then.

In the next month, we face two consultations with doctors. The first one, on Tuesday, is a yearly exam with Zack’s pediatric cardiologist. At birth, Z-Man had two holes in his heart that were (hopefully) going to close by his first birthday. At his last pediatrician appointment, though, the doctor thought he heard a murmur. Children with Down Syndrome are often impacted by serious heart defects.

Then in mid-October, we go to Children’s Hospital in Pittsburgh for a consultation with the pediatric urologist. Zack will likely be facing a surgery in the next year — killing two birds with one stone as we try to help his non-descended testicles (keeping them up can increase his risk of sterility and testicular cancer) and a hernia near his belly button.

I’m a nervous wreck.

When Zack was five days old, we left the hospital for the first time, heavy with a new diagnosis and exhausted from an extremely long hospital stay and traveled to the cardiologist’s office, where our nine-pound baby was attached to wires and coated with ultrasound goo as a strange new doctor with a heavy accent looked around his tiny heart. I cried so hard trying to breastfeed him in a private room afterwards, wiping the blue goo all over the doctor’s chair that it was the biggest failure of a feeding we had. I thought I had actually been feeling my heart break in two and I knew that this would be no ordinary parenthood.

I knew that life would never be the same.

But it’s still shocking when it stares you in the face. When a lanky boy with a beautiful smile has no idea how much his mother loves him, how much she would do for him. How much she has sacrificed, studied, learned, prayed.

Zack is getting a one-year evaluation from Early Intervention and we have already been warned by our therapists that we may not like the results and that we, a collection of his caregivers, may have failed him, becoming too comfortable with how we were doing things to encourage more and more independence, strength… success.

So, we endure crying while we force him to feed himself puffs and melts and pieces of cereal, we urge him to hold his sippy cup despite the fight he gives us and we fight right back, pulling him up to stand and letting him roam and crawl and explore. Because I’ll be damned if I ever let myself fail him. If I’ll ever let anyone fail him, give up on him or stop him from having every.single.opportunity humanly possible. I will never look back in regret; I will never wonder if we all did enough for him.

 

 

 

 

 

 

 

 

 

I will fight.

Because he’s a fighter.

Because he made me a mother, he made me a better person.

And when I forget that, I have an amazing support system. E-mails and texts that tell me they “get it,” upbeat quotes that always come at just the right time, compassionate words from c0-workers. And friends like Owen’s Mommy who spent the better part of an awesome playdate listening to me sharing my worries and babbling about exercises and yadda yadda, this and that… all the while, she’s instictively helping Zack to stand, rolling a ball back and forth to him and making him grab things on his own, all the while making me feel like the luckiest friend in the world.

 

 

 

 

I love how Zack and Owen have this amazing bond together. How they sometimes babble in their secret language to each other, sharing toys now, touching arms and pants and feet with smiles. I hope they are always friends and I’m grateful at the comfort knowing Owen will have such a wonderful Mommy who will teach him in just the right way all about his BFF.

 

 

 

It’s funny how life works out, what happens when you’re not looking or thinking or planning. It’s funny how even at the worst of times, there is still that deep-down feeling that you still have it pretty good and things will all work out just fine.

 

 

 

 

 

 

 

 

 

 

 

 

Cornfields remind me

It’s been a really good couple of days. You know, the kind of day where first thing when you wake up and last thing before sleep, you just feel at peace, all through your body and mind?

That’s where I’m at lately.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I may not be 100 percent happy or be getting enough sleep or relaxation or whatever else (maybe I am), but I’m definitely just at a peaceful spot and I’ll take that.

 

 

My mind travels at least 60 mph to match the car on rides home. Watching the corn grow taller and taller, the breeze a little cooler at night. And I think about this season’s feelings five years ago when I first met Scott. His hair was longer and blonder and I had a huge crush on him. I loved listening to him sing country songs with all the windows down, laughing at myself from being so far from where I thought I wanted to be. Silly girl.

And look at us now.

 

 

My job is going well, really well, but I still take the most pride in my job as Momma, whether it’s just stealing a few moments before bedtime or catching a few grins before I leave for work. Whether it’s an entire day of smiles or rocking that wicked teething process away for a few moments. Whether we’re by ourselves or surrounded by the love that comes in Mommies exchanging wise conversations without even talking, watching each other for cues from 20 feet away. Whether it’s the immense pride I feel when quicker crawling is seen or “Ma” escapes his lips, those big blue eyes staring only at me.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The end-of-summer madness everyone else is feeling I’m oblivious to — I get to watch it go by slower, slowly. As others try to grab at last get-togethers before school begins or the final vacation of their year, I enjoy my year-round career, thinking I never have to wish for one season to slow down or another to speed up; I get to just live it at a pace that feels just right.

The passing of a football between big kids, the passing of sleepy babies from hip to hip.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

<—- Apparently, the change of seasons also means you need to update your diaper bag. Z-Man had no warmer clothes. So, the hoodie belonged to a nearly-three-year-old girl and the camo pants were thanks to buddy Owen No.l .

We’ve since updated to try to move a little higher than World’s Worst Parents.

 

 

 

 

I think I might cry when the corn gets cut.

It’s been a good, good harvest.

 

 

 

 

Reactions to a diagnosis

Continuing the week of birthday-related posts:

 

From Aug. 14, 2010, one week after Zack’s birth:

Hello everyone!
Thank you so much for all of your love, well wishes and support since Zack’s birth one week ago. As you’ll see by the end of this e-mail, it’s been quite a long adventure these past seven days for all three of us and each of your thoughtful gestures has helped us move through a challenging time.

First of all, let me emphasize that our baby is perfect. He is our little miracle that has made us the luckiest two people in all the world. I think I can speak for Scott in saying that being a parent has been the most amazing blessing of our lives so far.

Now to the reason for our e-mail.
From when Zachary was first born, our pediatrician at the hospital and several of the nurses in the obstetrics department noticed that the baby may have several of the signs and factors of Down Syndrome. The biggest of these signs was our little one’s beautiful face. It doesn’t quite look like either one of his parents and has things like upward-slanting eyes, a smaller mouth, flatter nose and diminutive ears. The physical appearance of his face was the first and most striking of the signs present in Zachary that prompted a chromosome test to be taken and sent away to see if the tell-tale sign of Trisomy-21 was present.

The hospital pediatrician, who has been amazingly dedicated throughout this entire process, called the lab today on his day off to see if results had been determined. He then called us to let us know that Zachary did test positive for Trisomy-21.

From downsyndrome.com:

What is Down syndrome?

Down syndrome is a developmental disorder caused by an extra copy of chromosome 21.  This disorder is caused by an error in cell division that results in an extra 21st chromosome. Having an extra copy of this chromosome means that each gene may be producing more protein product than normal. Cells seem to tolerate this better than having not enough protein, or having altered protein due to a mutation in the DNA sequence.

The condition leads to impairments in both cognitive ability and physical growth that range from mild to moderate developmental disabilities. Through a series of screenings and tests, Down syndrome can be detected before and after a baby is born.

The only factor known to affect the probability of having a baby with Down syndrome is maternal age. That is, less than one in 1,000 pregnancies for mothers less than 30 years of age results in a baby with Down syndrome. For mothers who are 44 years of age, about 1 in 35 pregnancies results in a baby with Down syndrome. Because younger women generally have more children, about 75 – 80% of children with Down syndrome are born to younger women.
It could be years before we really know to what degree Zack will be impaired — if at all! — and so we are approaching this whole thing as strongly and with as much hope as possible. He is our little boy and we love him just as much if not more than before. We plan on giving him every opportunity possible and letting him know that “no” is not an option. There are great programs in our area that will work with Down Syndrome babies from birth to help them develop at the same schedule as most other children, from crawling to talking to school things, etc.

There are many positive signs that perhaps Zack does not have a very serious variety of this disorder…
One of the major factors seen in most Down Syndrome patients are heart problems, often times very serious ones that require open heart surgery or that will seriously affect the person’s life. We went to a pediatric cardiologist the other evening and although we need to go back in two weeks for a re-check, Zachary was clear for all of the major/more serious issues. He did have two small holes in his heart, but the doctor was very confident that those would heal on their own within a year. This is so huge! We are so grateful that this doesn’t seem to be an issue.

Muscular tone is another common sign of Down Syndrome. Those babies with the disorder tend to lay motionless and limp and our boy is anything but that. He is strong in his his muscle tone and squirms and wiggles his way most of the day. He has quite the grip, too! The pediatrician was so impressed with his muscular tone that he started doubting his diagnosis because of it at one point. Go, Zack!

Zachary is a perfect baby! He eats extremely well (and they say those with Down Syndrome usually can’t breast feed successfully — ha! we prove that wrong 10 times a day!), seems to digest things perfectly well (you should SEE some of these diapers!), tries to lift his head, shows us a little attitude now and then and loves to show off his beautiful blue eyes as often as possible. He’s even rolled over to his one side a couple of times now.

We wanted to let you know because you are a part of our support system and because we want you to be aware of why we were in the hospital so long, why we maybe haven’t seemed ourselves the last few days, etc.

We also want to let you all know that by all means, Zachary is a normal child to us. The pediatrician we will be seeing from now on told us that Zachary is the “normal” one and that the rest of the world is screwed up. I believe that. Please join us in watching Zack show the world — and all these doctors and painful tests — that “no” is not a possibility and that you can accomplish anything with love and perseverance, prayer and hope.

We are never given more than we can handle.

Thank you for your continued love and support. Be prepared for many more photos soon!

Love,
Wendy, Scott and Zachary
xoxo

*    *     *

And then the love came flooding in:

I love you more Wendy — and this time it has even more meaning. You are an incredible strong young woman and to share your story with no hesitation that this is not a setback but a “bring-it-on” challenge impresses the hell out of me; you are a very brave person. Only you could embrace this and I am so proud of you.
Zack could not been born to two more loving people and it’s thru your strengths and convictions that he will do great in this world. He has a mild case but none the less he has Down’s and we will all love him just the same and we will challenge him and treat him like we have our other nephews/nieces/cousins. Zack is going to prove those doctors wrong, he will show us all his greatness.
God loves the three of you and I know he will be with you every step of the way.
It sounds like from your descriptions, though, that Zachary will be proving everyone wrong. No  matter what, you have a beautiful son who will always be the light of your life. I can say that unconditionally as a mom, that your boy will be your shining joy, as my boys have been mine. Every gift from God is special.
thanks for sharing the news with us. i said to xxxx when we read this that this little boy could not have better parents, grandparents and the rest of the friends and fam. to raise him. obviously, this changes all the long term dreams you may have had for him but that is life isn’t it? always changing while we are busy making plans.
it is really positive that he isn’t showing a lot of the signs of typical (more advanced?) trisomy-21.  he is indeed a beautiful little boy. if there is ever anything we can do–i know we are pretty far away but ya never know–please let us know.
i can see it in your eyes that you are SO FAR in love with this baby. i do think the world is still his oyster.
You two are the most amazing people I know. Zack could not have been born to stronger, more caring parents. We’re rooting for the three of you every step of the way!
While I wish your Zack did not have to endure this, it does say to me that someone up there trusts you a great deal. I cannot think of a child who will be more surrounded by love, support and opportunity.
I am thrilled for both of you (welcome little Zachary!) but most of all, I’m thrilled for Zachary because he has the best parents in the world. I’m not a super spiritual person but I do believe in God and I’ve always believed that God chooses people for certain reasons and I know he blessed you with Zachary because he’ll have an inimaginably beautiful life with you two running the show! You’re baby is perfect and what ever obstacles are ahead – if any! – I know you’ll tackle them as a family and always emerge stronger!
You talk about you two being the luckiest parents in the world, but we think Zachary is the luckiest baby in the world. He has two parents who will give him all the love and support he needs throughout his life. He will have a life that lots of children will only be able to dream about and he will have opportunites that lots of children will never have.  We look forward to the day when we can have our children play together and they can create their own friendship as we were so lucky to have done ourselves.
What an amazing outlook you have honey.  Zack is going to have a wonderful life because of you and Scott.
First of all, HUGE congratulations on your beautiful baby boy! He is
absolutely adorable!! I am happy to hear that the delivery went well
and that you are back at home resting.

As far as Zack’s diagnosis goes, I’m sure it must have come as a
shock. However, everything is going to be fine! Children with Down
Syndrome have opportunities these days that they didn’t have even 20
years ago, and as you said, you really don’t know yet how he is going
to be impacted yet. He is a completely normal kid who is going to have
a wonderful childhood. You and Scott are great people, and Zack is so
lucky to have you as his parents.

I didn’t write until now because I figured you were getting hit from all sides and needed a break. I just wanted to simply say that I love you and that new baby boy of yours and know you and scott are the number one people for the Zac.
I never expected to see, feel or experience so much love. I felt it right away, those first weeks in August, and I feel it through to this very day.
I love that some of you ask constantly about therapy and new exercises and achievements and then even the “normal” baby stuff. I love that you’re as curious as we are and as interested, too.
I love that you have donated in Zack’s name; that you have RSVP’d to our party this weekend; that you sent an e-mail or a card to say you understand.
I love your love.