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┬ásee 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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A journey of faith

The lil Zee Family has come a long way, lived a thousand lives, journeyed a hundred journeys. One of these journeys has been a journey of faith. In the near decade (!) that I have known Scott, we have had our ups and downs in terms of belief. Usually one of us was doing “well” — that is, learning more, reading more, attending more. The other wasn’t quite on the same page.

When Scott and I experienced our marital problems in 2013, I found myself again questioning faith. I’ve always believed in fate and in destiny but I have found myself constantly questioning the plausibility of a God and a religion and a world in which so much bad happens and so many questions are left unanswered. I mean, I studied journalism — for me, my world is all about getting answers.

It was actually seeing the positive change in attitudes, personalities and just pure joy in some of my younger coworkers that got me trying this Faith Thing again. I listened to their stories and their discussions. I joined in, slowly, with questions. Then I attended an informal study group of theirs. And soon, I couldn’t stop thinking about it, about all these stories and names and how they suddenly made sense even to me.

When we moved recently, one of the first things Scott wanted to find was a home church. We literally picked a random church to start (as in it was very close to our new home, looked beautiful and seemed a good place to begin) and an even more random denomination (Methodist, or, as we advertise it, the perfect balance between our two backgrounds. Scott grew up in the Brethren churches (think of it as a pacifist cross between Mennonites and Baptist, with footwashing, lots of music and an emphasis on community service and brotherhood.) I grew up with tradition and ritualistic Ukrainian Orthodox and Catholic experiences.

We were so impressed with our first Sunday there, and then with how people remembered our names (all four of us!) and where we last sat when we returned a week later. We were so glad when the pastor visited us at our home that week just to get to know us. Services make you think and answer questions instead of raising more of them.

And so, months later, it seemed only natural when this first shot-in-the-dark church and its pastor asked us if we wanted to join officially.

So, this weekend, our family stood up at the front of the church. Scott and I made promises. Zack and Addie received water from our beloved pastor and were introduced to our congregation as family members watched from the pews.

I still believe to an extent in fate and destiny. But now, I feel comforted knowing that there is faith. Our faith, to share together and learn together, like the late night Bible readings and discussions we share.

I am far from perfect and still wish to be a better Christian, especially to lead a better example for my children. But I am trying. And I am on this journey. And one day, Zack and Addie can choose their journey, too, whether it’s here or somewhere else or nowhere at all. They have the foundation for it.

A banner hangs in each of their rooms reminding them of this day and reminding me, every time I walk past their doorways, of a very unlikely and special journey.

Thankful thoughts

Addie and I were snuggling under the covers at bedtime last night singing songs about her favorite show, movie and book characters. It went something like this:

“Mickeeeeeeeey, Mickeeeeeeeey, Mickeeeeeeey…”
“Peter Rabbit Rabbit Rabbit…”
Then, a nod to Puss ‘n’ Boots, the feisty feline from the Shrek movies, almost caused me to fall out of the tiny little twin bed.
“Boooooooze…. ohhhh Booooooze… is a cat.”

And as I’m wiping away tears of laughter and snorting like a lady, she holds my face in her hands and looks at me very, very seriously.

“I eat you up, you love me so.”

And then Scott and I switch rooms and I go to lay down next to the Z-Man, prepping myself for the ritual routine of “Stay in bed. Stay in your room. Please don’t open your door.”
But he’s already dozing!
His eyes are so heavy and he’s barely even sucking on the thumb in his mouth.
He opens one eye, mouthes “Momma,” and he’s out with a smile. I pet his hair a few times and listen as his breathing goes to that sleeping place.

The ‘babies,’ though I still call them that, rarely let me have the baby moments now. They’re stubborn and strong-willed and independent in so many ways and I love that. But I miss the quiet moments, the singing, the giggles at bedtime. I miss being the last thing they see before a good nights’ rest.

In this time of gratitude, I am so thankful for them.
And the huge spectrum of moments they bring to my world. The good, the frustrating, the emotional, the pulling-my-hair-out ones. I wouldn’t trade a single one in, for they are part of the bigger picture of being blessed to just be their Momma.

To wake up and fight off sleep and reach clumsily for coffee while simultaneously urging a four-year-old that he can not wear only a diaper and boots to school while his little sister puts her Cheerios in a sand bucket and shouts to no one in particular something about a dragon stealing her amulet.

I’m grateful for Scott and his hard work, for allowing me to stay at home and fulfill some dreams for a while. Dreams of photography and these moments with the “babies.” I’m grateful for so many loved ones who reach out when I need a “right smack bottom” (It’s a Shrek thing) or need to vent to someone; to the family and friends who love me more than I think I deserve sometimes; and the ones traveling to be with us for a belated Thanksgiving celebration this week.

But of all the things in my life, I’m so very thankful to me — to the woman who, in rare beautiful moments, forgets fears and ignores the mess on the dining room floor and remembers to live THIS moment, be the Momma they need and I want to be and still not lose sight of the things that make me me.

Those moments — singing and giggling and whispering secrets to a sleeping blonde boy — I swear it’s for those moments that I am alive. I swear it’s those moments I feel most alive.

Be thankful. For the moments you have. Stop and smell the coffee, or at least see if you can get to the Keurig machine with a smile on your face. Start there, pause, look around, and voila. Your thankfulness lies in front of you.

Happy Thanksgiving, y’all!

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!!!

Down Syndrome is/is not our world

It’s October and it’s Down Syndrome Awareness Month. But it’s also the peak of Autumn, the start of a school year and the end of the peak season at work.

I am in one of those moments. Suddenly, our world is not all about Down Syndrome. Our three-therapies-a-week are done; Early Intervention is two months in the past already. Zack is a superstar at his school and has made friends who hold his hands and call out his name. He is a loving, ornery big brother to Addie.

He says, “Come, Momma,” and grabs my hand to show me a toy.
If he sees me with my sandals, he exclaims, “Shoes!” and points to the door, wanting to go outside.

He gives me the most perfect hugs, rubbing the top of my back and petting my hair and saying, “Momma… momma… momma” over and over.

And if I say the word “kiss,” my lips are met with his and I feel so loved and I feel so much love.

I would love to talk to the me of three years ago — the new mother who immersed herself in DS websites and books and statistics that scared her. She worried about not doing enough; she worried about not teaching enough, not having enough of the right teachers in this unfair world.

I would tell her that she will be OK, but that more importantly, Zack will be OK and our family will be OK. I would tell her it’s not about what Zack is taught, but what he will teach so many around him.

So yes, we still struggle to understand his babblings and potty training is a work in progress; yes, we talk of things like “inclusion” and “IEP.”

As much as our world IS about Down Syndrome and the worries we have about its effect on Addie, not just Zack, our world really isn’t about it at all.

Our world is about a handsome blonde boy and a lil mischievous girl.
It’s about the way they hug and kiss and the babbles they share.

It’s about a little boy reading the Little Engine That Could and exclaiming “chop-choo” every few seconds. And me watching him, my heart beating outside my chest.

I knew you could, I knew you could, I knew you could…

I knew we could, I knew we could.