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.

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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.

You’re FOUR!

 

I don’t know if it’s more difficult for me to accept that you’re four years old or that I’ve been a mother for that long.

Zachary, you made me a mother. It’s the most amazing title I will ever own. I am forever grateful to you and to this beautiful, crazy, amazing world for bringing you into my heart.

It’s not the motherhood I imagined.

Because it’s better.

 

You bring love and joy to all who meet you. Tough little bullies melt when you become their friend. Boys who were just getting yelled at by your teacher then bear hug you in the hallway just minutes later, calling you Zacky. They are so excited when you enter the classroom. I know very, very few people who actually bring light to those around them the way you do already. Imagine when you’ve mastered speech and communication? We will all be incredibly blessed to feel your love in other ways.

 

I will never in all of my life forget how my heart felt the first time I saw you. An operating room is not the typical place to meet the love of your life, but there you were, those dark grey eyes meeting mine as a nurse held you. You were big and quiet and you spoke to me with those eyes.

Just a couple of days later, the twinkle in your eyes turned out to be a sign of Down Syndrome. I sat at the edge of my hospital bed that night and stared at you, brushing the top of my hand along your forehead and hair and trying to wrap my brain around the news. And then, without warning, your eyes just opened up and twinkled up at me with a half-smile. We would be OK, we would be OK, we would be OK.

And that was that.

 

You are not Down Syndrome. You are not special needs. You are not even a “special” child… you have tantrums, you are strong-willed, you sometimes don’t listen and you sometimes push your sister. You are an almost-four-year-old. My almost-four-year-old.

In recent weeks, your speech is taking off. We’re hearing two and even three-word sentences here and there; you’re responding to questions and communicating needs and wants. I don’t know how to describe what that means to us.

 

You love the waves on a beach. It’s about the only time I see you truly fearless and completely uninhibited. You hold an adult’s hands above your head and leap in the air with a shriek with each crashing wave.

 

You’re so loved at school. In a couple of weeks, we have to say goodbye to this school and these friends and part of me aches. These teachers and your classmates have embraced you so beautifully and adore you so much. Their love and your growing knowledge and confidence have cemented the fact that yes, you can achieve ANYTHING and everything.

I have been incredibly touched by the friends who have come forward in the wake of our announcing our relocation. The one thing they all keep telling me? How sad they are that their children will not have a chance to grow up so close to you and with you; to have a chance to learn about the love you bring into this world and the lessons you can teach kids and parents alike. I can’t wait until you understand what a huge and beautiful thing that is; what a light you are in this world.

 

When we were visiting relatives in Asbury last month, you kept running to a nude framed sketch in the one room and yelling, “FALL DOWN!” We were all in hysterics. You were so concerned about this woman laying down on the wall.

 

Due to your little sister’s screaming at bedtime, you’ve gotten the “Big Boy Bed” in the Playroom at bedtime. The other night, I laid next to you and you said, “Sing!”

Sunshine?, I asked.

“Sunshine,” you smiled.

So we sang our song, “You are my sunshine.” You grin from side-to-side at that last “a-waaaaaaaaay.”

“Star?” you asked.

Twinkle?, I asked. You nodded.

So we sang Twinkle, twinkle little star.

And you put your arm under my head and patted my hair.

When we were done singing, you simply told me “Night-Night” and gave me a sloppy kiss on the lips.

 

 

Some days, I look at you with fear and ‘what if’s in my heart. But those days are few and far between now and I’m tougher and better at pushing scary thoughts (heart problems and low life expectancy and college and marriage and speech and mainstream school, oh my!) far, far away.

Most days, I look at you with pride. A pride that swells so much it all but suffocates me via love. I never knew these feelings existed. And I certainly had no idea that a 40-pound, four-year-old Little Man would be the one to bring those feelings into my life.

 

I will fight for you every day of my life with every bit of knowledge and power I can muster.

 

Z-Man, I love you. I love you as much for who you are and what you do as I do for what you make me and how you change me for the better.

I love you, I love you, I love you.

 

 

 

 

 

 


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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.

 

Isn’t she lovely

Addison Caroline turns TWO today.

It’s a blur; it’s a fast-flying dream.

In my first weeks of pregnancy with her, I told Scott, “It’s a girl and she has a HUGE personality. She will be a handful.”

He rolled his eyes.

But I was right. About all three things.

 

 

Zack made me a Momma. Addie made me a stronger woman.

After Zack’s DS diagnosis and rounds of therapists and tests and minor health issues, the decision to have a second child was infinitely more difficult than contemplating our first. What if s/he had DS? What if s/he didn’t? Which would be more difficult for us? What if Zack needed so much of our time? What if s/he suffered indirectly from Big Brother’s disability or teasing from kids at school or losing time to therapies and special schools?

And then one day, it just hit for us. We realized this was not about the What Ifs and the What If Nots. This was about baby coos; this was about being a family of four. It was about the idea that we two only children (sort of) always wanted a decent-sized family.

We got pregnant almost immediately with Addie. And she let us know she was the boss.

 

I spent four-and-a-half months with such severe morning sickness, I sometimes couldn’t make the 20-minute drive to work without having to pull over in tears. It was a pregnancy filled with much more discomfort than my one with Zack — my sciatica ached early on, my glucose was borderline and I nearly passed out a dozen times, she kicked and punched relentlessly and sat on my tailbone or up in my ribs the majority of the time.

 

But I also felt a strange peace during those months.

I would force myself to steal away to a quiet corner or amidst a Spring breeze alone for a few moments to just be. Be calmer, be wiser, be a fighter for myself, be a survivor, be a DS advocate, be a better worker, better leader.

 

Because of Zack’s DS, Addie was considered a high-risk pregnancy and so I saw a specialist for the first half of my time with her in utero. Just days after the New Year began, we trekked to an office 40 minutes away for a 4-D ultrasound looking for signs of DS and other severe complications.

The sweet technician waved the wand around a bit and smiled. “It’s a girl,” she said.

She must have thought we were crazy because we didn’t bat an eyelash. (OK, I miiiiiight have said an “I told you so” to Scott)

You see, the gender of the baby meant very little to us at that time.

I just want healthy, please be healthy, I prayed.

The technician could not say anything about DS markers and said the doctor would be in shortly. We waited some more. When you wait five months of a pregnancy to make sure your baby is healthy, a few moments shouldn’t feel so long, but it was agony. I was half in tears for those ten minutes.

We became a case study for the doctor’s entourage of young doctors-to-be, five white-coat-clad men and women who were brought up to speed on our situation and what we were looking for and… and finally, the words.

“I see no markers for Down Syndrome. It seems you have a very healthy baby girl.”

 

But still.

For a few days, that news was amazing. Felt like flying.

But then it wears off a bit. You see, Zack had ultrasounds during his pregnancy and nothing was ever caught in them. Who says they couldn’t miss something with Addie?

 

But I tried less worrying and more living. And weeks and months flew by until I saw her face in an operating room on May 18, 2012.

 

All that dark hair, I gasped.

And those eyes. Oh my God. She looked half-exotic. This darker skin, dark hair, big blue eyes.

 

And that scream.

She screamed for an hour. Impressed the nurses and Daddy. Mommy missed her already.

 

She is as much a contradiction to Zack as one can be, but at times the two of them seem deeply connected at the soul.

Zack is quiet, calm, solitary, loyal and so loving.

Addie is busy, louder, so active. She is not shy and she has no fear.

Zack prefers reading and playing pretend with animals and dolls. Addie is surrounded by six stuffed animals at bedtime but otherwise prefers building or coloring.

 

Her jet black hair has transformed into these long, soft locks of light brown, almost dark blonde wisps that frame her face. We’ve never cut her hair but get asked to this day if that’s a planned hairstyle. She’s always looked a lot like me, but lately is transforming into her own little person.

And she is beautiful. I may be biased. But from the first weeks at home with her, there are some mornings I get her out of her crib and just GASP. She’s just lovely.

(Until she tells you NO, dumps cat food, colors on the wall or… oh no, wait, she’s always lovely,right?)

 

LOVES: Bubble Guppies. Duckies. Cows (she looks for them on every car ride). Chi-chens. Pizza (just like her momma). PURPLE!

CURRENT SAYINGS: “Hi, it’s me, Addie” “____, where ARE you?”  “I change diaper.”  “I see ____”   “I call ____ (usually Pop-Pop or Nana)” “Where go? I no know…”

 

The way she looks at her brother.

It floors me every time.

She looks at him with adoration and a great gorgeous love. Her eyes follow him and his activity. She accepts every dance invite (they hold hands and twirl in a circle) and when they’re working on different toys, she will sometimes stand up to see what he is doing or will call him over to look at her game. She accepts his hugs and squeezes, even the ones that land her on the floor accidentally.

 

She is helping Zack.

It’s not why we had her (someone asked us that once) but honestly, she guides him. She speaks new words and he mimics her within a day or so. She tries to take off her shirt or put shoes on and he soon does the same.

When she wakes up in the morning, she either asks for her friend Aubrey or her big brother. When we drop Zack off at school and it’s not her day to go, she cries, sobbing “Zaaaaaaa” in the backseat for ten minutes.

 

There are a thousand things I love about my daughter. But I love most the way she has moved me. The way she has changed my heart to make it big enough to love twice as much.

 

Addie,

I hope you will always be strong and always be a fighter.

I hope you will always love your brother and make him a fighter, too.

I hope you use the potty regularly soon.

I hope you always eat as well as you do now. (Never trust everything your dad gives you — some of it WILL be hot!)

I hope you appreciate my efforts to put you in pink and do your hair.

I hope you always bring vivacity and excitement to the rooms you enter.

I hope you know I would fight anyone, I would destroy anything in your path with my bare hands, I would be your loudest cheerleader in whatever you choose to do or pursue. Forever.

I hope you know you will never be as loved as you are by we three.

 

She turns TWO today. And I am a sentimental, happy, excited little fool.

She is the spark.

And she is so, so lovely. 943772_694458912044_1860684619_n _DSC0053-2 401730_632180473534_933391962_n 550385_634956774804_2061434742_n Aubrey (16 of 32) EASTER (40 of 56)

 

 

Knowing him has… (World Down Syndrome Day)

I very often share our world here; how DS plays a role in it and how Zack and his sister shape it in so many different ways.

But today is World Down Syndrome Day and our little Zack Attack, 3 1/2 years old now, doesn’t just change the ways his mother and father think; he doesn’t only make his sister Addie smile. No, our boy has touched many lives and warmed many hearts.

After Zack was born, I promised myself, hands clenched in fists alone in a hospital room, my son cooing in his bassinet nearby, that I would spend every day of my entire life opening doors for him.

Yet, as evidenced by the outpouring of love shared below, Zack is the one opening doors. And eyes. And minds.

Zack is the one making a difference.

Please consider a donation in Zack’s honor to the National Down Syndrome Society HERE.

 

 

 

Wendy’s mother-in-law Debbie:

Zack’s diagnosis was devastating! No way around it! Broke our hearts and broke our hearts to watch Scott and Wendy trying to be so strong. They were strong because Zack needed them to be. This precious child was placed in their arms and he was their son, no matter what, for now and forever. Through her research, Wendy learned everything she could about Down Syndrome and connected with other moms of DS children. She also started blogging to allow her to share her feelings and work through the roller coaster ride of emotions.
One of the most amazing things that has come from this experience is that we have gotten to know so many wonderful people. First it was the Early Intervention therapists, who came to the house and worked with Zack but also let us share our thoughts and concerns. They were amaziing and became like extended family. Their care and affection for Zack was evident as his face would light up when they came to the door. Now he’s in preschool a couple days a week. His teachers and the other children have taken him in with open arms and support and encourage him. Through the local IU8 program, Zack is getting continuing therapeutic exercises as well as speech therapy. The atmosphere at both locations is one that teaches respect, kindness, patience and understanding. We are so fortunate that Zack is in such caring environments.
Zack is amazing! He has come so far in the past 3 1/2 years. Have I mentoned that he’s absolutely beautiful? From the angelic face with blue eyes and blond hair lost in concentration as he’s reading a book or watching TV; to the mile wide smile and laughing eyes that greet me at the door with a shout of “Gammaw” as he runs to wrap his arms around my legs. Moments I will treasure forever.
But Zack’s just getting started; he has the whole world in front of him. He will learn and grown and be whoever he wants to be. I have no doubt about it. He will thrive because he will always have his family behind him to pick him up when he needs picked up; to push him when he needs to be pushed and to encourage him every day of his life.
Wendy’s friend Krystal:
I remember when I heard that Zack was diagnosed with Down Syndrome feeling my gut sink to the floor. I couldn’t believe it. I remember feeling a sense of guilt for the rest of us having healthy children and then I stopped and thought about what the Zooks had to be feeling. Becoming a first time parent is tough enough emotionally and physically let alone hearing anyone say that there is something wrong with your child. Without Zack being born I don’t know that I would have the relationship I do with his mommy today. I feel we bonded over Zack and other things we have way to in common. We grieved together whether we realized it at that time or not. I was hesitant to talk about Down Syndrome with Wendy at first. I never wanted to make it all about Down Syndrome because it was about the blonde mohawk blue eyed boy that we all love, but I didn’t want to ignore Down Syndrome either. It was now part of their life. I was scared for Wendy, Scott, and Zack. Parenting is unknown territory. We all try to prepare ourselves however it is usually a day to day fly by the seat of our pants rollercoaster. When you are pregnant we daydream of what the days will be like as our children grow. All of these hopes and dreams we have for children. I see your family as motivators, advocates, loving, kind teachers. Zach is such an inspirational little man. He is a loving, adventurous, mischievous, curious little man and I have all the faith in this would you as a family will give him every opportunity to him to be independent. He has taught us all to appreciate each day and brings a smile to my face each time I see him. I think of the lessons he will teach all of our children. The way society is today I know there will be struggles and bullies; however I know he will have a strong support system and I hope my children are standing beside him to stand up for him and cheer him on every step of the way!
Wendy’s OB/GYN nurse/friend Jennifer:
Wendy, I have been trying to think for days of what I would like to say about Zack. Not that I know this little boy as well as most people do but I think I could say I had a personal interest in the care of Mommy while she carried this lovely little man that we all get to see today & are bless with. Like some when I first saw Zack I had no idea that he had Downs, maybe be cause I could not get past that wonderful smile, those eyes, and of course Wendy you know, when he reached out for me to hold him “WELL” OMG The boy might as well & he did that very day took a piece of my heart and has had it ever since. And I think his mom knows this because now she uses this lame excuse of him being in school for me NOT to be able to see him!!!! LOL I love you guys & was BLESSED the day you came to see me.

Wendy’s sister Shelby: I spent the weekend with him and it wasn’t until I saw a post about him having Down Syndrome a few weeks later and asked (brother) Shamus if he knew and he said yes. I never thought that he was anything more than my mohawk man.

Charity, Zack’s Occupational Therapist/Wendy’s friend: Oh what to say about Zack! When I first met Zack he was a happy little boy who was having some trouble with solid foods. He had a hard time biting off pieces and chewing and Scott and Wendy wanted him to be able to eat with them. With a little practice and patience Zack was chowing down on his goldfish, jello cups, crackers, and cheesies in no time! Zack amazed me every week I saw him. I would come in to see him for OT and he would be doing something new or would have learned a new trick. He quickly learned how to feed himself with a spoon (of which I think the most fun was practicing in the bean bin and Zack throwing them all over the living room!). I was so excited for him when he learned to use a spoon and fork all by himself. Soon he was drinking out of a straw cup. Although this wasn’t my “area”, I also remember Zack saying some of his first words, like “ball” and Zack learning to walk and climb the steps…and although he has down syndrome he did ALL of this in only a short year and half that I was able to see him. When I ran into Zack recently at his new school, I was AMAZED at how well he interacts with the kids, completes his school tasks, and most of all I was sooo proud when he sat up to the table and fed himself his lunch and drank from an open cup with no problem! Zack is such an amazing little man and I sure do miss seeing those smiles every week and watching him torment those cats at your house! Zack has such a bright future and you and Scott and his grandparents and everyone else in his life had made and will continue to make Zack a great little man! I can’t wait to see what the future has in store for Zack!

 

Wendy’s cousin Andy: I really don’t think of Zack having Down Syndrome…to me he’s just a cute adorable kid..he can at least figure out a smart phone which is more than I can do now!

 

Wendy’s friend Reva: I think back on being pregnant along with you and the expectations we both had of motherhood and that always takes me to the day we brought Owen home which was the first time we had heard about zacks diagnosis. I remember just sitting on the bed holding my newborn baby and I just bawled my eyes out. I cried out of fear, cried for Zack, cried for Owen, but mostly i was so upset for you Wendy. I cried because I realized that everything we couldn’t wait for with our boys would be changed for you completely. It took me actually sitting down and researching Down syndrome and it took talking with you and it took holding and bonding with Zack for me to realize that Down syndrome was not this big scary end to a perfect boys life but that it was something so amazing and so wonderful and something to celebrate every day. We have watched how in nearly 4 years Zack has become this beacon of light for your family and the most inspiring thing about it all is that through every one of zacks milestones big and small your entire network of family and friends celebrate with him. Our kids play together and will grow up together and will always have their Own little support network. We all know he is going to do great things with his life and I know I personally can’t wait to be able to say I changed that kids diapers lol! I watched him grow and I was there when he learned To crawl and walk. I’m so thankful to have Zack in my life because he reminds me everyday to celebrate this life I have no matter what.

 

Wendy’s friend Drew: As having a sister with mental disabilities myself, I just never thought as Zack as any different.  My favorite moment was walking up to aunt alice’s front door and watching alice and zack dancing

 

Zack’s Sensory Therapist Kristan:I think Z is awesome. I am just starting to get to know him but he is super smart and is going to do very well in school. His personality cracks me up. My favorite is when he sings into his toy microphone (whatever he can find to resemble) and bobs his head while making up his own tunes.

 

Wendy’s friend Allison: I had never known anyone who had Down Syndrome before Zack. I didn’t know anything about it, but that the kids who had it were “different.” As I grew up and learned more, I discovered the value of seeking information and now can appreciate just how “different” these folks are. They are kind in a world of ugliness, generous in a time of selfish entitlement, loving and affectionate to people they barely know and can put a smile on the faces of a million strangers (which you know is true if you’ve ever seen a FaceBook post from the Down Syndrome page.) I believe there are a lot of things to learn from kiddos like Zack…patience, persistence, and shear, unadulterated happiness. He’s a special guy for a lot of reasons and I feel blessed to know him and his family the way that I do!

 

Wendy’s cousin Melaney: I actually do think of Zack as having Down Syndrome and how knowing him has expanded my awareness; my awareness about DS and the unique strengths and struggles of children and adults living with it. Zack is also a sweetie who is just as cute and lovable as can be who I am lucky enough to have in my family.

 

Wendy’s friend Lindsay: Zack is the first child with Down Syndrome that I’ve had the opportunity to know on a personal level.  The way he smiles, his eagerness to know and learn about the world, and the way he loves his sister and pets are just a few of the things that showcase his sparkling personality and huge heart. Looking at Zack is like looking in the mirror at the pureness and goodness we were all born with. He’s a beautiful child with a beautiful soul and it’s been amazing to watch him grow, thrive, and tackle new challenges!

 

Wendy’s “uncle” (B)rick: This is a little easier for me to answer because of having my own special needs child. When a special needs child is born to a family who really has never experienced such a situation there is a fear that looms over everyone. Basically, it is a fear of the unknown. Everyone does not know what to expect. The fear can be crippling in some aspects,more so to relatives than to the mother and father. A mother and father while experiencing the initial trauma of the unexpected, sooner rather than later, adjust to the fact that in the game of life, they have been dealt a wild card. Parents, while being overwhelmed with there fear, adapt as they begin to reap the unique love that a special needs child gives on to them.

The relatives, however, need to be guided through there fears. The parents need to expose there child to the families and show the bravest of faces. We can only hope that our relatives are brave enough to face the unknown.

These children really have no concept of their uniqueness. They go forward through life with the loving encouragement of all who surround them.

My daughter, being so severely challenge, has been the most difficult of experiences. My family, while they tried, have never truly adjusted to the situation. This is honestly justifiable due to difficulty they experience in trying to communicate with Chris.

As you know through your own original fear and experiences, the dread is quickly dissipated as you show love to your child and he in turn begins to return your love. You will always run into people who are unable, or unwilling to deal with such situation. You can only drive onward with life and do the best you can with the card you have been dealt. Never assume that Zack can’t do anything. Children have a way of surprising us.

 

Wendy’s friend Nicole: I’ll always remember the night I learned that Zack was born with Down syndrome.  Two little words seemed to bring our worlds crashing to a halt, bringing us to a scary unknown.  For a little while, those were the first two words that bubbled up to the surface when I thought about Zack.  The words were as foreign to me as they were to his parents, and they and their family and friends grappled with this new reality.

But you know what?  It’s been three and a half years and those two words are just that:  two little words.  They in no way define that amazing little boy.  Now, what I remember the most when I think of that little boy that lives 500 miles away from me is his infectious laugh.  He has this bubbly laugh that builds up as he gets going, and it’s so joyful and contagious that you can’t help but burst out laughing yourself when you hear it.  And now his sister has the same laugh.  I remember how Zack always grabs the iPad when his mama and I skype, and how he’ll march it around the house.  I’ve gotten some really good tours of their ceilings, as well as some slobbery internet kisses that way!  I think of his soft blond hair, the kind way he has with the cats, how much he loves to settle in and read in his special little chair.  I think of the mischief maker and all the little messes that he gets himself into as he’s exploring his world.  I don’t think of DS.  It’s there, but it’s under the surface.  That’s what he and his family have taught me over these past few years.  They’ve opened the door to this whole new world of acceptance, of inclusion.
This year I’m thrilled to have a student with DS in my regular education classroom.  I get to work with her every single day, and I see amazing advances in her and in the other students as they learn to work together with their friend and accept all differences, big and small.  Those two little words are just that, now:  two little words.  Nothing more, nothing less.  They’re there, but they’re not all that is there.  They no longer define Zack, nor do they define my student.  These are just a few lovable kids with almond eyes and big dreams.  Let’s remember that.  :o)
Wendy’s aunt/Godmother Alice:
I’m ashamed to admit that when Zachary was born I was disappointed to learn that he wasn’t going to be a “normal” child but he proved me so wrong. Who are we or rather, who am I to say what is normal? When I held him in my arms for the first time I realized I was in love with him; my third great-nephew, my late sister’s grandson.  Zachary makes me laugh, fills me with love, and is the greatest joy that I never knew could happen. This little boy with the extra chromosome is such a smart boy, such a happy boy, such a loving boy and we are all better for it and so blessed. I hope he can forgive me for my initial reaction for he is incredible and will prove that he can do anything.
Wendy’s cousin Laura:
I remember how happy I was when I heard my little cousin was having a baby.  The same little cousin I was never too close to due to age difference and perhaps technicalities only making us “cousins-through-marriage.”  Regardless of the details, I always thought so fondly of this little cousin and could not be happier for her.  When I received the news that Zachary had graced the world with his presence, I couldn’t wait for pictures.  Over the next few days, the news of Zack’s diagnosis made it’s way to my side of the family.  It didn’t necessarily shock me or devastate me as it may have others.  I am a Special Education teacher so I know how much love these special little munchkins have to offer and how they seem to brighten any room they enter.  I was however, worried for my little cousin and her family.  I didn’t know how she was feeling.  I didn’t know how her family was feeling.  I know it takes a special kind of person to accept the challenges life throws at them and while I was pretty sure she was just the type of person to handle it, I can’t begin to understand how she must be feeling.  As the days, then weeks, then months passed by I received updates and saw pictures but still wasn’t quite sure how my little cousin was feeling about motherhood.  I knew the holidays were approaching and I was keeping my fingers crossed I’d be seeing her for Christmas.  I was looking forward to giving her a big hug and seeing for myself how she was handling these “challenges” that life had thrown her way.  I also secretly couldn’t wait to get my hands on this cute little bumpkin I’d only seen through pictures!
I remember walking into my mother’s house and seeing my cousin across the kitchen, snuggling with her little man who was sacked out in her arms.  It only took a second; just one quick second and it was clear.  My little cousin was not only glowing, she was a natural at this whole “motherhood” thing.  And really, how could she not be?  Because that was also the moment I met Zack… and in that moment, I fell in love too.
Wendy’s Uncle/Godfather Joe:
Like most people my age, I had little prior experience with Down Syndrome children; certainly there had been none in our family or of close friends of which I was aware.  During my day these children were pretty much hidden from the public, either kept sequestered at home or sent to special schools or institutions.  Only occasionally would we glimpse a DS child (commonly called by that horrible name “Mongolian Idiot”), outside the home, usually being forcefully led by an older and frequently poor woman.  We rarely if ever saw an older DS person.  So, having Zack being born into our family was met with not a little apprehension, sadness, deep concern for his and his parent’s future, and, of course, a great deal of ignorance.  But from that moment on we started to become more educated, more hopeful and more welcoming of this child, almost on a daily basis, through Google and his Mother’s blogs and updates, and, of course, by just being with Zack himself.

Seeing him for the first time, I was taken aback by his shock of sliver-blonde hair and fair skin (I didn’t know “they” came in different colors) and his surprising lack of what I had come to think of as “typical” DS features: swollen protruding tongue, Asiatic eyes, etc., though they are present at times if you look long and hard, but to me they are still not very obvious.  And, of course, there was no way at that time to really judge his intellectual abilities which is also one of the characteristics of DS.  But as the months went by, you tended to notice more his smile, warmth and easy disposition.  He just didn’t seem to fit squarely in the DS box that I had been brought up to expect.  Sure, his legs were disproportionately shorter than his body and his motor movements seemed to lag behind others of his age, but none of that seemed to hinder him from getting around – often too well – using his “crab crawl” or to keep everyone, myself included, from wanting to hold and cuddle him at every chance and to respond to his smiles.

But what amazes and fascinates me most about Zack, since he was about two years of age, is his profound love of books and how he quietly sits and turns each page carefully and “reads” them, full of inflections and emotions and verbal outpourings punctuated by finger pointings towards certain obviously favorite characters, almost always animals.  There is simply no way, watching him, that you can believe that he isn’t actually reading them, line for line, enjoying them and being totally engrossed in them, not unlike his Mother and her love for books.  His quietness and need for occasional solitude do not represent to me anything antisocial or abnormal in the least, but simply his preference for and enjoyment of quiet and alone time at times, especially to relax and enjoy his books, something I can personally identify with.  I think that his easygoing and loving nature – as well as that wonderful smile – and his need at times to be alone in order to read his favorite books are those characteristics that most define him as a person and most endear him to me.  Regardless of whatever level his intellectual or motor skills might progress to in later life, I am certain that Zack will do well in life, foremost because of his loving and supportive parents, but also by virtue of his sweet personality, loving nature towards all people, especially family, his love of books, and his love of and need for moments of quiet reflection and solitary enjoyments, in addition to other activities.  Would that we all might be such a similar person……

Madeline, NDSS: 
When I first started working at NDSS, I did not have a personal connection to Down syndrome.  I knew a little bit about Down syndrome and knew the physical traits but I did not know much else.  Coincidentally, I started in September which was Buddy Walk®  event month and the first event I worked that had interaction with the families.  Meeting the families and being around people with Down syndrome changed my life immediately.

I noticed how dedicated and devoted parents of children and adults with Down syndrome are.  I noticed how many different personalities, abilities and interest people with Down syndrome have.  Some people I met were dependent on their parents and families and others were totally independent.  Some kids were well behaved and others were not.  Some had jobs and families separate from their immediate families.  Some needed some extra attention and support.  And with noticing all that, I noticed that children and people with Down syndrome were just like typical children and people; with different degrees of abilities and accomplishments.

Fundraising for NDSS promotes value, acceptance and inclusion of people with Down syndrome.  We have a policy center in Washington, DC, whose purpose is to fight for the legislative rights of people with Down syndrome.  We have an extensive website with current information about Down syndrome-programs, health, education, and transition. We have publications that range from new parent information to an aging guide.  We also provide scholarships for post-secondary education programs.  Your donation will benefit these initiatives so that children like Zack have the same opportunities as anyone else.

So in closing, when I first started working for NDSS it was just a job.  Now, 12 years later and thousands of connections to Down syndrome, it’s my life’s work.

Please consider a donation in Zack’s honor to the National Down Syndrome Society HERE.

Ask away!

I try to show our life, our very normal life, if you will, through this blog, but I know that our day-to-day anecdotes can’t possibly cover all of your wonderings on the subject of Down Syndrome. I’m still learning myself.

So, in honor of World Down Syndrome Day on Friday, I’ll dedicate a post on Thursday to answering any questions submitted here, via e-mail (wrzook@gmail.com) or on Facebook.

Nothing is off limits. Nothing is too silly or easy or difficult or strange or insensitive or whatever. Don’t think, just go with your gut and ask it!

“The desire of knowledge, like the thirst of riches, increases ever with the acquisition of it.”

– Laurence Sterne.

You can still donate towards the National Down Syndrome Society HERE.