The FYI and that tree

Kindergarten registration, perhaps particularly for a child with a disability or handicap, is not for the weak at heart. I hesitated writing this post because I know this has been a redundant topic and I fear that it comes across as only negativity regarding Zack and our journey. Not my intention at all.

It was supposed to be 15 minutes of a quick screening, I was told. We were excited to finally have one of us see the inside of the “home school” for the kids (where Zack will attend is still up in the air). After our issue with the registrar’s office last month, I found my anxiety level in the last few days rising steadily. Still, I kept my chin up and my mind open and drove the mile and a half to the large brick building.

We took a photo out front and marched up the front steps, all three of us counting together. We were greeted in a lobby filled with Cat in the Hat cut-outs and smiling children.

And then we were given a packet, instructions for a six-part circuit in the gymnasium and, right on cue, Zack ran down the hallway and wouldn’t come back to me, smack in the middle of a handshake with the principal. The first stop after scooping him up and talking about danger and listening, was simple — letters and colors and shapes — the table where he’d impress and prove wrong the challengers.

He didn’t speak a single word. Not his favorite color or the first letter in his name. A Kindergarten teacher at the school shrugged it off and told me it was no big deal and sent us to the next station. He wouldn’t even sit down at the table where all he had to do was match letters and name the item in a picture. At the nurse’s station, a middle-aged woman asked questions about immunizations and I don’t know if she didn’t make eye contact because I was already holding back tears or if the tears came because I felt her give up.

At the top of Zack’s checklist, an hour later and now with “yes”s and “no”s alike, was a tiny yellow Post-It. “FYI” in large block letters. And the name of the LifeSkills class in another school miles away. At least they were kind enough to add a question mark, but by now, visions of a dismal, windowless room in the basement were already popping into my mind. The other school, the guidance counselor said as we left, ink still drying on our packet, “could be lovely, too.”

On the way out, Zack counted to 12 on his own and pointed to my Jeep and said “Momma’s white car.” I cried in that parking lot while the kids ate their gifted lollipops and attached stickers to their shirts.

I hated Down Syndrome more than ever before in that parking space under a flowering tree. I never even thought Kindergarden would be a blip on our radar this year. And now, the same strangers who assured us that ZMan could thrive in an elementary school, maybe even a regular classroom, go ahead and go through the process, what’s the worst that could happen? — Those strangers already counted him out or counted on this. I mean, FYI.

It’s not the recommendation that he does X or Y; it’s the getting there wondering if you’ve done enough.

The worst that could happen? This. This parking space and the phone call to my husband. The helplessness and the hopelessness. The reminder that everything is a battle and some battles can’t be absorbed by a lollipop and his Momma.

My friend is wise and calming and she told me today to “try not to borrow trouble.”

So I lay my worries on the ground and cover them up and plant something beautiful in their place. We will cherish and nurture the good that comes out of this mound of dirt and we will see where it takes us in these next few months. And we will grow. Perhaps into a flowering tree to harbor fears and shelter worries.

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The Registrar

It was supposed to be a simple meeting.

“Ten minutes,” the e-mail read from the school district registrar.

We’ve decided to go ahead with registering Zack for Kindergarden so that we may have another evaluation, receive recommendations on where he would best learn, tour a couple of the local schools and THEN make a final decision.

First of all, wow, What a process! We’ve met with a Special Education team shortly after we updated his IEP. They were completely torn on whether to hold him back another year (since he JUST started his new school and JUST got a new IEP and JUST added Occupational Therapy and JUST started receiving help from his aide) or have him start Kindergarden in September (because he would do well with routine and structure and he’s improved so much just in a couple of months, etc).

So after I assembled his birth certificate, social security card, immunization records and completed a 30-minute long online application, I made the ten-minute meeting with the registrar just to finalize and formalize and move ahead.

A very polite woman in her 40s gave Addie some coloring books and sat me at her desk at the district office. I smiled, nodded, gave the paperwork.

She came back from making copies and said, “OK, so your home school is… ”

The answer should have been Dana Street Elementary. It’s five blocks away. That one or the State Street Elementary, in the next town, with a great LifeSkills system in place, are our two options. But the key thing is we have at least two options.

This woman interrupted herself, mumbled, “Oh, that’s right, IEP… hmm, Down Syndrome…”

And then said.

“It doesn’t matter what his home school is. LifeSkills, right?”

Like it was nothing.

Like she didn’t just say something that made me want to punch a stranger. In the face. In front of my two-year-old daughter.

I kept my Jersey in check and didn’t cause too much of a scene, although I did make it very, very clear that we are looking for an evaluation, considering both possibilities and will pretty much be leading the process based off of what’s best for Zack.

To which she replied, “Well that’s not typically how we do things with… this… sort of thing.”

I didn’t even question what sort of thing or why there was a “typical.”

But gosh, last night was just exhausting. Mentally exhausting. Because there are a thousand fights to be fought for ZMan just to make sure he is given a freakin’ chance. For my beloved potential and possibility.

In six months, Zack may very well enter a LifeSkills class and never look back. Or he might be in a regular classroom down the road. Or we might wait another year and enjoy Pre-K some more.

But whatever decision we make, it will be based off of looking at ALL of the options. Not just what’s “typical” or what might seem obvious to a 40-year-old polite lady in a crowded office.

Where we are

One of my resolutions on the 1st (I wrote a long list this year) was to blog more often. I’m hoping we can all pretend that the first two weeks of the new year without a post never even happened and we can start working on this resolution from here on out, OK?

One of the reasons we haven’t had a blog post is because we’ve been so busy (Wendy’s photography business and Mary Kay team, visiting family, meetings with Zack’s school and much more). The other reason why we haven’t had a blog post is because among all of that craziness, I’m working really, really hard to disconnect more often and for longer periods of time and just be living in the quiet moment of Now. So, the kids and I have been playing pretend games together and Scott and I have enjoyed time together with some new favorite shows and even a game or two. I sometimes get so stuck on what I should be doing; who I should be helping; what I should be planning… that I forget about me and about Scott, Zack and Addie. No more of that nonsense. It’s all about balance.

So here we are.

I woke up a few days ago and just felt like we were on the cusp of something huge; something much greater than just a new year or a new month. We have spent so much of the past year transitioning from one home to another, one job to another, one lifestyle to another, that I finally feel as though we are ready to just live it now. To just be where we are and not where we are going or where we were.

Life is such an amazing adventure. I just want to soak up every minute of my journey.

Zack and Addie are the most wonderful little humans I’ve ever known. I might be biased.

Addie is so quick and witty. She greeted me at 7 a.m. today by shouting “Open the door, please, it’s good morning!” And when I opened the door, she reached out with her hand, shook mine and said, “Glad to meet you, Momma.”

She just continuously makes me laugh. More than four months after moving in to our home, she still asks her grandparents and random strangers if they want to come see her new room.

Her imagination is insane. She jumps from princesses in peril to babies and towers and hammering things that need fixed all within about 20 minutes. And there is so much drama! She knows how to work a pouty lip and lower her eyes and glance up at you through her dark eyelashes. You can’t not smile, I guarantee it.

We had some trouble with her stubbornness and strong disposition, but now we are getting a better handle on how to make her want to be a good girl instead of just going into discipline-the-bad-girl mode. She is relatively quick to clean up her toys, many times without me even asking, and she’s even more tolerant about sharing and brother hugs.

I love her quiet moments so very much.

The other day, I think we both wanted and needed some cuddly time together, so I suggested we watch a show under the blankets together while Zack was at school. I suggested princess movies and Bubble Guppies and even Dr. Seuss.

“No, momma,” She said. “I want to watch Momma’s show.”

I didn’t think it would last, but I gave it a try and flipped on the last 20 minutes of a terribly cheesy movie I watch on repeat whenever I get 20 minutes to catch my breath or eat a snack. She watched it all with me and held my hand tight. Near the end, she pointed to the lead female character, in a slightly sad scene, and told me that it was Momma.

But then quickly, she turned to look at me, put my face in her hands and said, “But Momma is happy because Addie makes Momma happy.”

She’s correct.

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And the Z-Man. Oh, how he is growing in so many ways in these recent weeks.

We are moving forward with getting him an aide for school and at home (about 14 hours/week total to start) and as long as the Commonwealth approves it, he’ll have someone by his side within the next two weeks. HIs most recent IEP meeting to discuss our plan for him for the next year, went well, all things considered.

It’s never easy to read a booklet on the most minute details of your firstborn. It’s never an enjoyable experience to hear things like “lifetime of needing special assistance” and “safety issues to himself” or words like “delay” and “lacking.” It doesn’t matter that we’ve done these types of meetings numerous times. It doesn’t matter that we are always grateful for them and for the handful of people in the room who care so much about Zack that it’s almost like he’s theirs, too. For me, it’s always like a rehashing of his Down Syndrome diagnosis. I grieve for a day or two, and then, we’re all OK. And I begin moving a thousand miles an hour to work on new ideas and areas of concentration. We’re asking a lot of “wh” questions (What color is that? Where is this?) to work on speech and we’ve got a lot of work to do to keep him attending to tasks without disrupting others or posing a safety concern to himself. But we have plans and we have dreams and they are all big and we are so excited.

Zack’s teacher spoke of his potential and she did it in such a proud way that I think “potential” is my current favorite word. Isn’t it exhilarating what power ‘potential’ has? You can do amazing things and be amazing. You can work to reach your potential because no one’s potential is just handed to them. Potential is a beautiful thing.

Zack has a good friend at school named Maggie. She’s a very quiet, shy girl who doesn’t typically like to be touched or disrupted, especially if she’s feeling a little anxiety. But for whatever reason, Zack can approach Maggie in any situation and hug her or hold her hand and she always lets him. This morning, it was just Zack and Maggie on the van to school. When we opened the door and he saw her, Zack just smiled and kept saying her name over and over like a song. Before I closed the door, I saw they were already holding hands.

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So here’s to more blogs. And to potential. And to holding hands and making people happy. Because that’s right where we are now.

The Liebster Award

Our sweet little Zee Family blog has been nominated for the Liebster Award!

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Fellow Momma Jess from Give me Strength, a heart-felt blogger, warrior, balancer of all crazy things in this life, put this blog on a growing list of talented, funny, beautiful people in the blogging community to have received this acknowledgement.

The Liebster Award is meant to encourage and promote other bloggers within the blogging community. “Liebster,” a German word, means sweetest, kindest, nicest, dearest, lovely, pleasant, valued or welcome.

WOW!
First, let me take a moment and tell you about Jess. Our paths crossed only briefly in person, but despite both of us moving, adding some kids, changing our lives all around and up and down, we’ve kept in touch thanks to social media. Jess started blogging just a few months ago. I’ll never forget her FaceBook post that basically said, “Thinking about a blog… should I?”

YES, I screamed into my phone’s FB app.
And then I proceeded to write a probably very long response comment about how it is a calming therapy for me and how much I would love to see what she had to say. She did not disappoint. Her blog absolutely lives up to the tagline “laughter and encouragement…” She writes consistently, which I appreciate, and honestly, which I admire. She has made me think for hours after I leave her page and I’m off doing some chore or task.
So, thank you, Jess.

OK, so this award has rules! And I’m trying desperately to be a rule follower, not breaker, in my old age!

1. Acknowledge the blog who nominated you. (Done!)
2. Answer 11 questions the blogger gives you. (Next!)
3. Give 11 facts about yourself. (oooooh!)
4. Nominate 11 other blogs. (So, they’re supposed to have less than 200 followers — some of mine have more than that and some I don’t know! So I might be breaking a rule! AH!)
5. Let them know you nominated them.
6. Give those bloggers 11 questions to answer.

Alright. Here are my questions from Jess and my answers:
1. What is the one thing that you want most to accomplish this year?

Balance. Did I answer that too quickly? I’m getting much better at it all — mom, wife, housewife, photographer, Mary Kay, family, friends… sometimes I can’t do it very well in one day or one week, and often, I forget to take care of me! I’m highly considering a day or weekend completely away and all by myself, disconnected! GASP!

2. What is your favorite quality about yourself?

I’m caring about others, almost to a fault. I love making people happy, I love the idea of memories and traditions. Sometimes, I definitely set expectations too high.

3. What is something that is guaranteed to make you laugh?

Addie-isms. That girl thinks of the craziest things. This morning, she said she had to go see Santa. When I asked why, she responded with, “Santa sing with me.” What??? Just now, she handed me her empty snack bowl. “I please, I just, it’s just I want more fishes.”

4. When you want/need to relax, what do you do?

Oh man, relaxing rocks! I like any and all of the following: coffee or tea, a good book, an old classic movie, crocheting, a walk or run outside, taking photos, calling someone just because, or just a random drive.

5. How did you come up with the name of your blog?

I’m not very original! Last name starts with “z!” Zee Family! In the very beginning of this blog (I actually had two earlier versions of this blog!), I even did things like “zee baby” and “zee house” — man that got old really quickly!

6. What or who inspired you to begin blogging?

Keeping in touch with long-distance loved ones and creating sort of a virtual recap of our day-to-day lives for the kids to enjoy one day.

7. Name your guilty pleasure.

M&Ms. I have entire bags of them, various flavors, hidden. I don’t eat a lot at once, but man oh man do I LOVE them. (Please e-mail for address and favorite flavors, haha just kidding!)

8. What is your least favorite household chore?

Either emptying the dishwasher or putting laundry away. I love washing dishes by hand and I really don’t mind doing or folding laundry. But I hate putting all those nice warm clean things away! Weird.

9. Do you utilize social media as a blogger? If so, how?

A bit here and there for this blog, mostly just on FaceBook. With my photography blog and business, I use Pinterest (to share ideas with future clients), Instagram (to share a lot of behind-the-scenes moments) and FaceBook.

10. To date, what would you consider to be your greatest accomplishment?

Being a Mom. Seriously, this is a great job. Super difficult. So frustrating sometimes. Always questioning yourself. But I love every moment I have with Z & A.

11. Where is your favorite place to shop?

Lately, I’ve been doing a lot of Etsy shopping, but typically I HATE shopping. My most recent purchases are 90% for my photography or for someone else!

My 11 random facts:
1.I have an insanely blended/mixed family. Dad, stepmom, two stepsisters, a half-sister, a half-brother and a gaggle of nieces and nephews. I grew up with an entire family that I wasn’t even related to and I LOVE them beyond words because blood never mattered.

2. I am so addicted to coffee. I typically have at least two to three good-sized cups a day. A couple of times a week, that goes WAY up. I couldn’t even quit 100% during my pregnancies. Doctor said all of the side effects were not worth it, so I went down to one cup of caffeinated and sometimes a decaf or half-half cup.

3. Despite my love of coffee, I’ve never been to the coffee shop that’s literally like five blocks from the house. I need to do that.

4. I’ve never had a speeding ticket…

5. … because I’ve talked my way out of them.

6. I love Wikipedia and IMDB. I will Wikipedia at least five or six times a day. (Who’s that guy in the commercial? Can a conjoined twin have a child? Where is most of the world’s heroin made?)

7. New England is my favorite place in the world. I love the history, the culture, all the great writers from there. And I love lots of snow and mountains.

8. Despite my love for reading, my lowest grade in my first 12 years of schooling came from 6th Grade Reading. Ms. Grob said I was terrible at comprehending what I read. I cried over that C+ for a solid week.

9. Hurdling was a bad life decision. I did it to help out my team my senior year of high school. I absolutely sucked at it, first of all. But, because my technique was so poor, I wound up getting a torn hip flexor on one side and bursitis in both hips. I feel it to this day. Also, one day I ran into a hurdle so hard that I fell back completely onto the track and tried to regroup before anyone noticed. But my blood-soaked body and limp gave me away.

10. I love to laugh. I’ve been known to belly-laugh and snort.

11. Nicknames include: Wendell, Coal Car, Gemela, Dubya, Breezy, Baby Girl, Pookie.

The questions I’m sending to my favorite bloggers:

1. What has been the biggest surprise in your blogging journey so far?

2. What three things in a “typical day” make you happiest?

3. Share a favorite photo with you in it.

4. Where’s your favorite getaway?

5. What most concerns you about the next generation?

6. Do you have a favorite Christmas tradition?

7. Name three fears.

8. Who was the last person to encourage you and how?

9. What’s been the most important lesson you’ve learned this year?

10. Where do you see your blog in five years?

11. Have you ever hit “publish” on a post you regret?

And finally, my nominees for the Liebster Award:


Barren to Beauitful

The Life and Writings of Kate Baer
Give Me Strength (Jess, I had to send it right back to you, I’m sorry!)
Tales From the Trenches
Our Epic Story
Chasing Rainbows
Nicole Schwalm Photography
When the Heart Speaks
Mommy Life After PhD
Being Jane
Becoming Jolie

Reminder days and promises

When Zack was seven days old, I held a chromosome test in my shaking hand. Two things happened.
Firstly, I wished so fervently that I had paid better attention in my science courses.
Secondly, I made a promise.

My promise was to this baby boy I barely knew at the time. I said “this will all be OK” to him, but really it was to me. I swore to him endless days of both of us working hard and pushing each other and making sure we left no stone unturned; that if it was the last and only thing I accomplished in my life, he would have years of independence and normalcy.

And today, in the simplest of phone calls from his teacher at school, I felt simultaneously like I was still keeping that promise and still failing him all at once.

Two and a half weeks ago, when we observed Zack in his school for a Halloween event, we saw firsthand and heard from his teacher that he needed a good amount of one-on-one attention from the staff during activities like circle time, reading, lessons, crafts. It saddened me a bit that day to see how the teachers took turns sitting beside him for a snack and a drink and a few minutes of Dora. I told myself to shake off that sadness another time and smile because my Cookie Monster was smiling, too.

But today, Miss Joanie said she couldn’t wait until the next event or observation or IEP meeting or evaluation. That Zack’s need for that one-on-one attention was so demanding and his constant running away from the activities or being distracted from the task at hand was not only draining their manpower from other students but most definitely hampering what she called his very awesome potential.

“He’s very, very smart,” she told me to fill the silence when she couldn’t hear me nodding politely and fighting a tear or two. “He is an incredible child. We all want what’s best for him.”

She’s sending paperwork home tomorrow all about TSS’s — basically an aide who will be by Zack’s side nonstop during school… this month, or this year, if we’re lucky, the teacher tells me, into Kindergarden and beyond.

I can’t say how much I love Zack’s school, and his teacher. How I feel like we are all on the same page, all on Team Zack.

You’re going to tell me the same thing my Dad told me this afternoon when I called him in tears.

Me: “I feel like I have failed him in some way.” (My dad tells me I’m stupid for thinking that.)
Me: “This is the furthest thing possible from an independent life.” (This is probably a really good thing, my dad assures me.)
Me: “I’m so strong and I’m so positive and I will do whatever I can for him if it’s best for him. Maybe I should have done more. I never thought he’d need such hands-on, in-your-face help.” (My dad half-laughs. It’s not what you want, he reminds me. It’s not about you, it’s not what’s easy. Just keep doing one day at a time. His future is going to be great.)

Tomorrow, I will take a list out of his backpack and instantly make phone calls and set up a series of interviews and another round of evaluations. And then someone will be by his side in his classroom, keeping him in his seat and putting pencils in his hand. Grabbing his attention, sometimes his hand. Tomorrow will suck.

Today sucks more.
Because today is like the day I held that chromosome test. I have already Google’d a thousand things about aides and TSS’s and yet another part of a future I don’t want for my child creeps into my head. Research and educating and an e-mail to family (er, please accept this blog entry?).

And then we inhale deeply and try to sleep today away. And make sure to write a note of gratitude to Miss Joanie in the morning. And turn around to the positive side and likely move on from it all before some of you even read this. We will appreciate extra help and extra possibilities. We will probably love him or her as much as we loved his Early Intervention therapists, some of whom we still FaceBook message and e-mail on a regular basis. Just like his first teachers. They’ve all been on Team Zack. If you’re not on our team, get off the freakin’ field.

I know how lucky I am and we are and how great Zack is doing. Vocabulary continues to grow by the day. Conversations happen and “I love you”s repeated. Eating difficult food with utensils on his own. Learning how to use the potty. He’s so, so smart.

It’s just that today, I need to let myself be angry and upset and just get through this in-my-face reminder. I have to again grieve a lost baby that we had planned for five years ago and reacquaint myself again with this beautiful boy who now rocks every minute of my life. Because every now and then, I forget that this is not what my other Mommy friends are doing. But I know also that there are a million Mommas with worse concerns and scarier moments.

Remind me that John Lennon said “Life is what happens when you’re busy making other plans,” I dare you. I’ve already listened to six Beatles songs today.

Every now and then, life and its’ plans stare me in the face. We salute our glasses, nod our heads, sing some John Lennon and we fight over who gets to hug Zack first and tighter and longer.

I will always fight harder. I will always squeeze tighter.
Like I did four years and three months ago. Then, I learned about an extra chromosome.
Today, I open my heart to an extra pair of hands. And am so grateful for my Dad 100 miles away in a restaurant parking lot reminding me of potential.

I will keep my promise, Zack.

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.

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.

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”)