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.

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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.

Team Zack

Zack’s progress has always happened in waves.

For every surprise accomplishment came a three-month lull.

For every time we worked on walking and jumping and stepping, out came his first words.

When Down Syndrome enters your life and the life of your child, it is a never-ending road of questions, uncertainty, fighting and pushing.

There is no cure, there is no this-is-where-he-will-be-in-five-years.

You must find your resources (Early Intervention therapists, other parents, National Down Syndrome Society, special needs classrooms, and most importantly, yourself…); you must find your support.

And then you just dive in, give it your best, never look back and never look too far forward or you’ll drive yourself crazy.

When Zack was born, we didn’t know if he would ever speak or ever walk on his own. We had no clue if he would have major health issues or zero concerns at all (he falls at the low end of the middle — we battle respiratory illnesses for months at a time, he had two small holes in his heart that do not yet require surgery and a Man Parts issue forced a minor surgery two years ago).

At the end of the day, our prayers for Zack are exactly the same as those for Addie — that they be self-sufficient, polite, responsible, independent, intelligent kiddos and adults. That they enter mainstream school, are loved by their peers and teachers, complete high school and college, find a job that brings them joy and a man or woman who makes them complete and throw a dozen grand babies our way. We hope for graduation parties and Empty Nest Syndrome and a first dance together at their weddings.

And while we hope for the same goals, we realize the journey may be quite difficult for one (or both!).

Zack turns four in August and then we have one year before he should enter Kindergarden, maybe in our local public school system.

But maybe not. Maybe it will be in two years. Maybe three. Maybe it just can’t happen.

We realize both sides of the possibilities, but still we fight with every freakin’ ounce of energy and every bit of resources to make what’s  best for him, not us, happen.

So yesterday we met with his teacher and speech therapist from his special-needs classroom that he’s been attending two mornings a week since January.

Scott and I actually went into the meeting planning on gently removing Zack from the program as we felt he was with kids who demanded much more of the teachers’ attention than him and perhaps we just weren’t seeing the difference or the impact from there as we initially thought we would. It was a good problem to have, we thought. We were appreciative and we gave it a whirl, but hey, our boy is doing great in his “typical” Preschool three days a week!

But then we all got talking. Openly, honestly.

And we have a plan.

There is something about having a plan.

Even if it means more work or more time or more challenges at first. It’s a plan. It’s a step forward. It’s one step closer to that first day of Kindergarden at public school two miles up the road. The day I have been praying for and fearing for quite some time. Where I will lose my —- and bawl at the astonishing journey. But we’re not there yet, so hang tight Ole Emotional Momma.

So, in August, Zack will be trying the afternoon class at this location four days a week, while still maintaining his mornings at the other school. The afternoon class has more “advanced” kids and is a bit more challenging. And it’s primary focus? Kindergarden preparation.

It’s a no-brainer.

Four days may be too much, both schools might be too much. But, it’s my style to go all the way in and retreat a bit if necessary.

A woman I’ve only just recently met through Mary Kay wrote me a letter for Mothers Day. She follows our family through social media and her asking about Zack and Addie is always the first thing to happen when we are in the same room. That means a lot and I’ve always appreciated that.

But then, this letter.

I had actually received it two days before but in all the business of the week, it stayed tucked away in a bag until Wednesday.

This amazing woman of faith and strength shared that she had two special-needs children herself.

She gets it, I understood.

You see, just like the unwanted Motherless Daughters Club you are initiated into without request, so too is there a Special Needs Children Club that is scary yet so rewarding. The bond between we mothers is indescribable.

Anyway.

“I understand the day-to-day struggles and the day-to-day victories,” she wrote. “What some parents see as a small accomplishment, we see as a victory dance worthy.”

I smiled, I cried, I laughed out loud during her letter.

“God knew exactly the kind of Mom that Zack would need,” she shared. “The kind of Mom that would love him, protect him, nurture him, and yes, even fight for him. The kind of Mom that would get that glow in her eyes when she talks about him, post his artwork on FaceBook and sell Mary Kay so she could be home with him and his sister.”

The day I read that was a Battle Day. Battle with the kids’ strong wills. Battle with myself. Battle with DS.

And I opened that letter and it reminded me.

Not only am I not alone, but I am not allowed a pity party.

Zack’s parents, his family, our friends, even strangers are all working together. None of us know where he’ll be or what he’ll be doing in six months or six years or when he’s 26. I scare myself thinking about all the uncertainties.

But, like we said at the parent-teacher conference, we are all Team Zack.

Whatever it takes, we do. Whatever is recommended, we try.

Leave no stone unturned.

The thing is, even if he doesn’t go to college or marry a sweet partner, he will be happy, of that I’m sure.

And even if we never get a dance at his wedding, it’s alright, because he comes up to me several times a day, bows at his waist with a giant smile, holds out his arm and asks me to dance. I can never refuse.

And let me tell you, he’s got some great moves.

 

3 hours and 47 minutes

Addie went to “school” for the first time today. 

For this little almost-two-year-old, it means she went to the same church her brother does three times a week, stomped down the stairs wearing her little dinosaur backpack and marched down the hall from Zack to a little toddler room with blocks and a fish tank and six boys and girls that had no idea what they were in for with this little pink blur. 

Haters be hatin’ because when you say she’s too young and it’s not necessary and it’s whatever, well let me tell you what. I didn’t see a suffering baby girl screaming to be released from the pain and torture of (GASP) playtime with kids her age; nay, I opened up a door and saw a little girl lying down nicely on her mat, a smile creeping over her face as she showed me drawings, all with purple crayon, that she made for Momma. 

For one day a week, she doesn’t have to remain in the car watching Princess Sofia while I take her brother into this mystical place of mystery. For one day a week, she gets a break from Momma, and yes, oh yes, Momma gets a break, too. 

From the time I tiptoed sneakily out the door while she knocked on poor Fishy’s tank to the moment those blue eyes gazed up at me during Quiet Time, we had three hours and 47 minutes. 

 

I went grocery shopping. (No squirming or singing songs about squeaky wheels or condiments)

I put said groceries away. (All at one time)

I talked to my stepmother on the phone. 

I had a second cup of coffee (in one sitting).

I ordered food for Addie’s birthday party. 

I listened to (rap) music REALLY loud while driving by myself with all four windows down because I could.

I made playdates. 

I finalized Mothers Day items.

I worked on some Mary Kay things. 

Organized upcoming photo shoots.

I sat on a step outside, coffee in one hand, pretending to be planning some garden plants, but really and truly, I was planning (and, in a way, not planning at all) the potential for these Monday mornings. I could do nothing. I could do many things. I could do everything. That’s the thing. For four freakin’ hours a week, I have no said plans and no kiddos. 

I truly believe that these four hours will help me appreciate the good bad and ugly of the other 164 hours I’m focused on the kids and/or other people. 

But what these four hours mean to Addie are even greater. These could be her first best friends; her first lessons, her next burst of vocabulary or skills. 

So for three hours and 47 minutes, we all regrouped. 

We joined forces, marched out of that church, backpacks worn and steps being counted. Zack yelled “white car!” as he always does when we get to a parking lot and he and Addie proceeded to “gab” to one another for no less than five straight minutes. And we didn’t make it five miles down the road in that time, or even two miles, because there was one very happy Momma sitting in the front seat watching the interaction from a rearview mirror. She had many accessories — a headband, some sunglasses, and a badge of immense pride, hanging right there next to her heart on her Momma Sleeve. 

All because of three hours and 47 minutes. 

Your first day

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Little Z-Man, you are starting school this week.
It’s just a lil DayCare/Pre-K program we found for you that you’ll attend three days a week for a few hours each day, but it’s a big, big deal.

This is the beginning of your education, which I promise you is one of the most important and precious things you’ll ever be given (in addition to wisdom and street smarts and love and respect and kindness and freedom and strength and so many other things).

From this moment on, you’ll spend the better part of two decades learning things that won’t make sense now but you’ll appreciate in the future (like doing math without a calculator) and things you’ll wish you would have learned (like balancing a checkbook or killing a spider in the best way for your Momma).

From this week on, you’ll make friends you think you’ll keep forever. Most of them will fade away. The ones you work hard at and the ones you fit best wish will remain for years and years and years. They’ll know your every dirty secret (like the time you peed through your Pull-Ups on the first day of school, which I’m just calling now as happening on Wednesday). They’ll probably know more about your sister than your parents will, too, so keep them close and if they get any good dirt, beat up some boys and tell your Momma.

Some of your friendships you’ll lose. But the memories of those friends — the sleepovers, the laughs, the mistakes and the note-passing — these things you will carry with you forever. I still think about some of those moments from 20 years ago when a name pops up on FaceBook now and then. They made me who I am today — their families welcomed me in to their homes and fed me dinners and took me on vacations.

So all I can hope is that you will be brave and make friends. Build block towers together and chase each other outside at recess. I can’t wait until we all make new friends and I sip coffee with a new friend’s Momma while you play together.

Listen to your teachers. Always. I had some strict teachers and some easy ones; I had some kind ones and some mean ones. But they all taught me not just school lessons but life lessons. I had a second-grade teacher who sent me to the office during a lesson on prejudice and racism and discrimination simply because I had blue eyes. I’ll never forget the fear and confusion and sadness, but to this day, I remember Mrs. N and treat everyone I meet as an equal. My fourth-grade teacher came to Grandma’s funeral and gave me a great big hug that let me know she cared. That meant a lot. My sixth-grade teacher embraced my sarcasm but taught me not to ever cross the line. (I’m still working on this one) My sophomore English teacher told me I was a good writer and introduced me to the school newspaper. I’ve been writing almost every day of my life since then in some way. My freshman year of college, a professor made me feel like I was a number, not a person and I made it my goal never to just be a number in a group again but to always stand out as a good person. I hope you always respect and listen to teachers — they are not just adults at school — they are family, they are friends, they are coaches, they are sweet lil ladies in the fruit section of the supermarket.

I don’t know what education will be like for you. For reasons I will never understand but have to embrace, you were given challenges before you were even born. If I could have, I would have waved my magic Mommy wand and made all of your struggles disappear. But we are given obstacles and challenges for a reason. We must make the most of them and learn from them and grow from them. I hope that education pushes you but doesn’t tear you down; I hope people understand your challenges but never limit your possibility and potential. I will never settle than the absolute best for you and I will never, ever let someone tell us that you can’t do something. All of the above goes for your sister, too. You are both full of potential and I am going to make sure you have the brightest, happiest futures I can offer you.

We may have to take different approaches; we may have to take a detour or re-route our path. There are probably not going to be many shortcuts, but I promise you my patience and my help in any way I can give it.

And may the Lord protect anyone who disagrees with that.

So we start on Wednesday with a new backpack. In it will be a change of clothes and some Pull-Ups since you’re a Big Boy and learning to use the potty and it’s not always perfect. There also will be a communication log one of Mommy’s friends who works in Special Education recommended we start. I began with a letter to your teachers telling them thank you and letting them know all about your family and your favorite things. We’ll get little notes back from them talking about what you’re working on and how we can help and if you’ve had a good day or a bad day. We’re developing an IEP for you (Individualized Education Program, where we outline your potential and let your teachers know that you have a disability but you are not defined by that disability). You may even still receive some of your therapies (probably speech for sure, your toughest area currently).

If you get scared or lost for a moment, remember you love music and start yourself a dance party. I’ll be dancing in spirit right there with you, fingers pointing in the air. Or pick up a book and share a story with someone. Do what makes you happy and what makes you comfortable and the rest will come to you.

I am so blessed to be able to take you to your first day of school. We will make it short and sweet and Addie and I will offer you big hugs and kisses and find you a fun activity to start your day. I’ll squeeze Addie a little tighter and kiss her as I put her in the carseat. And I will try hard not to but very likely will bawl my eyes out for a few moments. I promise they will be happy tears because I’m so proud of you and I’m so proud of this huge, awesome support system you’ve had around you to get you ready for this day.

And I will have an extra cup of coffee and go and enjoy time with your little sister and some of Mommy’s friends and their babies. And just a few hours later, I will pick you up and I bet you anything that you’ll look bigger!

We never take anything for granted in life anymore. You have taught us about the many gifts in life. And this Wednesday, with your little “Zachary” backpack over your tiny shoulders, heading inside a building to meet new friends and learn lots of new things, you will give us another gift.

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“Dearest, when you go away
My heart will go, too,
Will be with you all the day,
All the night with you.
Where you are through lonely years,
There my heart will be.
I will guide you past all fears
And bring you back to me.”
(Edna St Vincent Millay, “Song”)