I see you…

You’re over there, pushing the cutest little blond boy on the red swing. He’s smiling a sleepy, peaceful smile that gets bigger when you surprise him with a tickle up his legs.

I see you twist around anxiously to watch a ponytailed three-year-old hop up fearlessly to the top of the tall slide, the one you think she’s too small for, but can’t convince her otherwise. I can actually see you hold your breath as you let her have this independent moment and try to keep it cool for the giggling boy next to you.

I see you.

You’re glancing at the little boy’s almond eyes with such a mix of love, compassion, worry, fear, hope, I can almost feel the heaviness in your shoulders. My gosh, that love. The pride you have when he makes a statement third-person about “Zacky” wanting to swing or needing a drink. You love those muffled words, those little phrases that you understand better than anyone else and that have taken hours upon hours of therapies and practices.

You’ve scooped up Miss Ponytail, twirling her and brushing back the fine strands that never stay in place. Her laughter inspires your laughter and Big Brother travels over to join the fun.

I see you.

Your embarrassment over the tantrum that was much worse to you than anyone else.

The mix of fear and exhaustion when he runs away, not understanding danger. You understand it too well.

I can imagine you holding a dance party in your living room. Some CCR on Pandora and four little hands mimicking your shakes.

I see you when she jumps up in bed at 5:45a.m., full of energy and questions. Your mind hasn’t woken up yet so its all about pulling her in close and smelling her hair and squeezing her tight.

I can imagine the way you internally jump for joy when, instead of his usual “No Kiss-a Me,” he asks you to stay with him in bed at nighttime and you pet his hair and caress the freckle behind his right ear and sing his favorite song.

I see your hands. That push swings for contented boys and steady brave little girls. That wipe tears and create imaginary pixie dust in different colors to solve different problems. That pick up strewn toys and flatten PlayDoh.

The hips that have held infants then toddlers and now 40-pound kiddos. They handle bouncing camera bags and your treasured DSLR.

Eyes that pore over chromosome diagrams and research papers and photo editing. That attempt the stack of neglected magazines.

I see you. Doing your best and trying so hard. You do your best when you don’t even try at all, when you just let it be, let it happen.

I see you. Do you see yourself?

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The Liebster Award

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

liebsteraward

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

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!

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!!!

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.

 

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.

What they don’t tell you

There are a lot of tough careers out there — I feel like retail and hospitality, both of which I’ve worked in, are pretty intense and stressful; and the ups and downs of a journalism career had its own share of adrenaline rushes, good and bad.

But this stay-at-home mom adventure I’ve been on these past two months is the most incredible experience I’ve ever felt in my life.

It gives the most amazing highs of highs. Until you’re a mom, I’m sorry but you just may not get it. The patting of a little boy’s hand on your back and in your hair and his sweet, slobbery kisses. The way you look into her eyes and see yourself and the way you stop in your tracks because she really is that smart.

I love the snuggles on sick days, being the only one who can make it all better. I’m grateful for the trips to the park and the walks to see the ducks; the first days of school and the scheduling of playdates. It’s a lovely little world.

Until reality sets in.

Because there is this whole other side to raising kids full-time that is so incredibly painful, in ways you never knew you could hurt.

I talked with one of my dearest friends last night and over the phone we whispered about how we’ve thought about punting our children across the room. Not very lovely, huh? It was nice to know I wasn’t alone and we laughed it out for a few moments, boosting moods on a difficult day. But the sad truth is that some days it is so very hard to be a  good mom for 15 straight hours on six or less hours of sleep to children who can squeal in such a high pitch that neighborhood dogs must lose their minds. A victory is not hurling your child across the room. (I never have, by the way).

You see, it’s a life of repetition.

“No” times 48.

“Please get out of the cat littler.”

“I said NO TOUCH!”

“Why are you in the toilet???”

“We don’t throw books at our sister.”

“Get out of the cat litter. NOW.”

You watch your tax paperwork get drawn on with crayons. You see scribbles on your work calendar. The remote gets hidden in the garbage. Then later, in a couch cushion. And then in the goldfish bag. And the cracker explosion on the floor and a leaking sippy cup.

You see, it all happens while you’re picking up the books and cleaning up strewn cat litter and doing silly things like attempt to fold a load of laundry and use the bathroom. Or you’re feeding the cats (don’t worry, their bowls will be thrown on the floor later) or taking the dogs out (while a child sneaks into the mudroom and you’ll later find a spiky toy in your left boot.

And then.

You hear the toilet flush.

And none of that takes into account a severe case of cabin fever from all three of you during the coldest, snowiest, most severe winter you’ve experienced in this state.

Pleas of “Outside” have to be ignored because the wind chill is -15 degrees and the snow is two feet high. There’s only so many crafts you can make and PlayDoh you can smash and cut and roll into little balls.

And you can’t help but feel bitterness towards your spouse who is enjoying 45-minute car rides with music and scenery and who interacts with adults for hours every single day. He’s not singing the Thomas & Friends theme song and he’s definitely not folding the same shirt for the second time after it — and the rest of the laundry basket — was pulled down from the table. You know, while you were sweeping up cat litter. And then he enjoys a night out once a week for sports and friends. Adult friends, again. And he works long hours and is tired when he gets home, so can you blame him for relaxing for a few minutes on the couch?

On the plus side, I know now how to cook a decent meal (meat, potato, vegetables — you betcha!) while yelling “HOT!” 73 times in 34 minutes. I can also wash dishes while hopping on one foot. Because the left foot is balancing the dishwasher door semi-closed because a certain 21-month-old loves to take the dirty dishes out while you load up the machine.

Somewhere in there, I’m sending e-mails and Facebook messages and attempting conference calls to further two independent, self-employed businesses (shameless plug for www.marykay.com/wzook and wendyzookphotography.wordpress.com HERE). I am so motivated and so determined and frankly, I’m kicking butt… but imagine what I could do with two solid hours of dedicated time every now and then? Silly, I know.

Oh, and none of this takes into account a trip to the Emergency Room with your eldest, where you alternate between near hysteria and eerie calm because he can’t catch his breath between coughs and he just looks at you with such discomfort and sadness.

It’s here that two ladies and one man in scrubs attack you from all sides, asking about your street address and insurance, medical history and length of symptoms. While your three-year-old clings to you, sobbing hysterically, batting away the stethoscope.

You pace the room for an hour, you hold up his arms while he cries during an x-ray. You frantically tell the nurse about the hole in his heart, just in case you forgot or she didn’t hear. “And you remember he has Down Snydrome, right???” you yell through an open door over a blonde head still screaming.

You spend four sleepless nights with him on the couch, aggravating an old running injury but catching up on your Olympics coverage, mumbling over and over, “Shhh, shhhh, it’s alright. Sleep, baby.”

Somehow, the laundry never ends, despite the fact that you’re lucky if you change your clothes three times a week. Everyone else in the house has multiple outfit changes a day, however. Plus, you’re finally noticing all of the neglected housework — the dirty curtains that need washed and towels and such. There’s closets to organize and couch cushions to clean and floors to mop and clothes to donate and socks to match and, well, this list, my friends, never ends.

So, don’t forget the Mommies. The ones who clean snot and clip fingernails among tears. The ones who push aside every selfish impulse (minus a venting, rambling blog post, it seems), to take care of their family.

It’s an illusion. We like you to walk through our door and say, “Gee, how does she do it?”

We, meanwhile, ask ourselves at least once a day, usually while running over our to-do list at bedtime or while hiding in the bathroom after a particularly traumatizing temper tantrum: “How can I do this?”

But you can.

I can.

She can.

I have to go now — the kids just threw all the books onto the floor and I can’t find the remote.

I hope it’s not in the toilet.