Zack’s birthday wish

UPDATE: We have raised our goal — again! — this time to $1,500. We have six days until Zack’s birthday and I’m confident and hopeful we can make this goal! The Z’s thank you for your love and support so far…

 

 

Our Little Man is approaching his first birthday. In just a couple of weeks, he will be one year old and no longer a baby. It has been a long, amazing, unexpected journey these past almost-12 months, to say the least (more about that in another post).

When I asked Zack what he wanted for his birthday, his immediate, selfish reply was “food. Lots of food.”

I reassured him that his loved ones enjoy the carrot-filled faces and pea-soaked raspberries too much to starve him. Plus, he needs food to survive. I gave Z-Man one more chance for a good answer.

After some careful thought, one dirty diaper and a three-hour nap, Zack said he wanted to help all of his other friends out there (like Nella, Colton, and others)  since he had enough clothes and since his parents keep getting rid of old toys every time he gets new ones.

“I want to make a difference, Momma,” is what I think “Blee — ababababa– Ma” means.

And so, the Family of Z’s will strive to make a difference in honor and support of our little guy.

In lieu of presents, however nice they are and however much you think a new onesie will help our already-overstuffed closet situation, we ask that any loved ones and supporters wanting to spend $10 or $100 on Zack think about donating to the National Down Syndrome Society (www.ndss.org).

Zack’s donation page can be found here.

I started with a goal of $500 when I started this last week. We’ve passed that number, quicker than I could even pull a post together. 15 people have donated $590 so far. FIVE-HUNDRED-NINETY-DOLLARS raised because of our son. That’s so amazing and I wish you could see the glee it gives me to race home, pull up the website and check that day’s totals. I’m addicted. I’m so inspired.

I can’t help but think back to when each of these people were told of our son’s surprising diagnosis nearly one year ago. For some, there were tears. Others offered long e-mails and messages filled with hope and encouragement. Still others let us know that our son was no different to them than their own children. That he was loved and accepted. That he and his family were going to be just fine.

Zack was moving around on the floor this morning, doing his backwards scoot and forward flop until he had wriggled and wiggled his way around most of the living room. I watched from a distance, knowing he needs to learn the pain of a thump on the hardwood (safely of course, people, no worries!) to learn the importance of balance and strength and keeping himself up. I know I have to let him get frustrated to give him independence — which may prove to be one of the most important gifts any of us can give him.

There were smiles and babbles, the occasional look up to Momma with a goofy grin.

And then he got himself stuck.

He wiggled his way right under one of our small tables. The back was blocked by a chair, both sides like bars enclosing around him. I could see the panic develop. He hasn’t yet fully gained the forward motion, but that didn’t stop him from trying.

He was there several moments, hands touching the sides of the table, feet flopping up and down in annoyance.

He looked up at me time and time again, becoming more upset and frustrated, the grin turning into a furrowed brow and pouting frown.

“You can do it,” I urged him.

He needed a little assistance, but The Dude was finally released from his little prison. Before we knew it, that moment was a thing of the past and we were enjoying our cereal and peas.

I know that “trapped” feeling well. I felt it for weeks, maybe even months after Down Syndrome came into our lives.

I remember just two days after Zack’s chromosome test came back positive, Scott went back to work and I was alone with a new baby, a sore body, a horrifiying diagnosis, anger and an aching heart.

We watched a lot of Little House on the Prairie that morning. Episode after episode amidst naps and feedings.

I was numb. I was lost. I was scared.

And alone.

Or so I thought.

Sometime that afternoon, I pulled my laptop close to where the baby slept at my side and typed “Down Syndrome” into the Google searchbar.

The first web link had a lot of medical jargon, something about 47 chromosomes and a lot of terms and thoughts that just pissed me off.

I hit the “back” bar on my browser and was just thinking what a bad idea this was when I tried the next link — http://www.ndss.org.

And there:

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.

That’s it, I thought. That’s how we’re going to handle this.

advocateacceptanceinclusionopportunityenhancerecognizeaspirationsvaluedwelcoming

That jumble of words brought so much hope to my aching heart. I just about jumped Scott at the door that day, surprising him with my desire to be positive and my wish to simply do our best for Zack.

By the end of the day, a mass e-mail was sent to friends and family, telling them not just about a diagnosis but about a wish for Zack’s future and our family’s outlook (plus facts from the website, dispelling myths and linking them to places of support for themselves as well). That week, we had reached out to support groups, locally and nationally; I found my favorite blog; set up an appointment with Early Intervention.

I’m a do-something-positive-from-a-hard-learned-lesson type of person.

I offered counsel every year to my girls’ cross country teams and became President of an eating disorder awareness group after going through years of anorexia and bulimia.

I was trained at a women’s shelter after watching my mother suffer physical and mental abuse as a child.

And now, I hope to raise money — and more importantly, awareness — for my son’s future and the support of hundreds and thousands of families like ours.

Down Syndrome isn’t what we planned; and for a while, we let it trap us on three sides, thinking there was no getting out of a dark, dark place. But what we’ve learned from places like NDSS, Parent-to-Parent, local support groups, unofficial support groups like new friends and old friends, family near and far and most definitely from our son, is that we can’t forget about the one open side. There is always hope. It may be against odds that are 3-to-1. It may be hard to find sometimes. But we’re not alone. And we’re not without an arsenal of weapons.

Baby food smiles, hugs, giggles and accomplishments, so many accomplishments.Phone calls, e-mails, cards, messages, love, love, love.

And so much hope.


Hello, 27

It was a great birthday.

(Even though that groundhog is a filthy liar and 10 inches of snow dumped on us!)

 

There were the usual moments of beauty that I’m blessed with every day — the sleeping sounds of my son, resting on my shoulder, a favorite song playing on iTunes, a deep conversation with someone I love.

A nighttime fire. A game or two.

Laughter, beautiful laughter.

Cuddles and snuggles and kisses.

 

 

And then there were added bonuses.

 

 

Having my own Birthday Buddy to share our day.

 

 

 

 

A bit of glamour in our lives.

 

 

 

 

 

 

Flowers for both of us from my mother-in-law, thoughtful as she always is.

 

 

 

It wasn’t that far removed from a typical Tuesday, but I allowed myself to be pampered and to feel special. And I made sure to not make any big plans for myself in the next year. Because there’s that old saying about life making plans for you. And that’s definitely something I’ve learned in this past year.

 

So, I promise to enjoy my life, every mundane Monday (which are infrequent) or worrisome Wednesday (which it’s not) and make the most out of it all. I promise to love all these great things I get to hold on to, get to wrap myself around every day, not just on “special” days.

 

 

Thank you to everyone who sent a card (many people!), wrote a message or sent a text (which I probably didn’t receive yet!), sent presents (love ’em, thank you!) or called with love.

 

 

 

It was a great day.

 

The 2010 Christmas Adventure: Part Two

I spent a large portion of Christmas week trying to convince Scott to move with me to New England. There’s just something about the quaint towns, incredible history (Hi, Emily Dickinson’s house!) and the absolutely beautiful scenery. Something that makes me all warm and fuzzy inside, from the first cup of coffee while gazing out at the birds on the feeder in the backyard until the moment I go to sleep, fingertips running over book titles on my uncle’s shelf.

My uncle and aunt are incredible people who treated us to a fabulous few days at their northwestern Massachusetts home.

The sharing of life experiences and family history; the bonding over favorite authors and their best works and conversations on a wide range of activities that kept us up way past our bedtimes.

It was also really special to see my Mom’s brother — and my Godfather — and his family, including my cousins and their two boys, having such a special time with Z-Man.

 

 

My gemela and Maid of Honor Nicole drove a couple of hours from Boston to spend a few hours with us, too. She spent so much time out here this past summer getting our home — and me! — ready as possible for Zack’s arrival that I was so glad to finally see my guy in her arms. (She’s visiting in February, too!)

 

 

 

 

It was much harder than I expected to leave Mount Sugarloaf and those colonial houses behind, not to mention the warm embraces and sweet smiles, but it had to be done.

 

And if I find a great-paying job that would allow Scott to stay home, I’ve got permission to move out there, too! Or, we’ll just keep trying to bribe him with New England’s grandeur… 🙂

 

 

Such a fantastic Christmas. There just are no words for its beauty and joy. I’m eternally grateful.

The 2010 Christmas Adventure: Part One

Our week-long journey across the Northeast was not without its hiccups — Zack mixing up his days and nights and us dealing with middle-of-the-night shrieks from the baby who has always slept through the night; dealing with a HUMONGOUS-OMG-Blizzard that turned into just a few inches where we were driving; a lot of time in the car and somehow not enough time with all of our loved ones.

BUT. I wouldn’t trade it for the world. I don’t even remember how many times I just stopped in the middle of something and said to my heart or out loud or to the nearest person just how happy I was at that moment. How blissfully at peace with the world and life and the realization of how many beautiful things are in my world.

There’s so much to share and I’m already feeling like I’m forgetting some special moments, so I need to keep as many of these memories at my disposal as possible. I’m splitting our trip into NJ and Massachusetts because, although MA was sort of in the middle of our trip, we spent as many days there as we did in NJ.

So, let’s start at the very beginning (a very good place to start)…

I already mentioned the glitches. Well, they began before we even left the house. We left an entire day later than we intended, but it all worked out great in the end. Hours after we should have been on the road, Scott received a phone call from his late friend’s father. (Zack’s middle name is after this former college roommate of Scott’s, who passed away a few years ago from a car crash). After nearly 40 minutes on the phone, my husband was just glowing. I was so happy that things hadn’t worked out the way we had planned, because maybe we wouldn’t have gotten that beautiful memory for Scott.

We finally had us and the car totally packed up early Christmas Eve morning and made it to my Dad and Janet’s house by late morning. We spent most of the day hanging out and bracing ourselves for what we knew would be an absolutely insane two days bouncing from one place to another. It also gave Z-man time to hang out with his PopPop and Nana, who might have loved every milli-second of it.

We spent the evening at Janet’s sister’s house with her family and had a great time. (Especially Scott, who might have sampled a bit much of the bar along with my father. The two of them spent house “playing pool” while in reality they were just laughing at each other while standing in the middle of the Game Room. Silly men. Apparently they bonded.)

We had a fun gift exchange on Zack’s first Christmas morning. He was far too young to understand anything but my heart was glowing at all of the future Christmases we will hopefully share with him. Scott and I began planning a lot of traditions that we can’t wait to start — some of which we already started this year.

Then it was off to my grandmother’s house for Christmas dinner. About 30 people, yes 30!, were in attendance, and there was barely an inch of extra room once the three long tables and chairs were set up around the tiny dining room area. It was so nice to see all of the family I had grown up with and who helped me become the woman I am today. They are so special to me.

Then, my parents joined us for a run to my sister’s house. My niece is a Christmas Baby and so it was time for birthday cake for her. I can’t believe she’s 11 already! I was at the hospital the day she was born and it was one of my most exciting days. I love being an aunt now more than I could ever imagine. It’s a really special relationship.

Then we had to eat and run to go to another party — this one with my Mom’s family. What an incredible group of people. Cousins and more cousins, loved ones with huge hearts and the absolute warmest of embraces. We rang the doorbell and you could just hear half a dozen people screaming “BABY!” and running for the front door. Zack was most definitely loved and soaked up every minute there, from falling asleep on Chochie Patti’s shoulder to snuggling with Cousin Tammy for such a long time. I really enjoyed my time talking one-on-one with Tammy, who was my soul sister growing up and is still so important to me now, despite being in different places in our lives.

We spent the night and next morning at my Godmother’s house. Aunt Alice and Uncle Paul are so good to and with Zack. He lights up when he’s with them, too. I only wish we had had more time to share with them, but the “blizzard” kept them from traveling with us to Massachusetts.

After our three-day stop in MA (four if you count the six-hour car ride it took in the snow to arrive!), we spent another very relaxing two days with my Dad and Janet, really spending the time as effortlessly as possible and having great meals and conversations together.

My friend Kacey, Zack’s “Aunt Boose” visited, too! She was teaching Zack really important things, like how to be cool and why good girls gotta get down with the gangstas… or something like that, I’m sure. She’s not allowed to tell him about his Momma in college until he’s at least 30, however.

The Jersey Girl was at her Then Home and happy and hated pulling out of that driveway last week to head to her Now Home. So many families, loved ones, friends, who made it unbelievably special. My favorite Christmas yet.

 

 

Tomorrow: Part Two — The Massachusetts Adventure

Tootle-loo, 2010.

With all due respect 2010, you were fine and all, but it’s time you go.

I mean you gave me an easy pregnancy and a beautiful baby boy, but really, I can’t imagine all the grey hairs I’ve gained and the many, many times I held my breath in fear, sadness, absolute shock or a mixture of the three.

2010 is a year I will never forget. It’s also a year that was distinctly split into two sub-years: January through July and August through December.

I was invincible through July.

After August, I became vulnerable. But perhaps that’s the best part of 2010; the one true treasure the year brought to me. It’s OK to be vulnerable; it’s better, I think.

The year began by missing my midnight smooch with my husband because the Baby Z-2-B was slamming down on my bladder. I found myself flushing the new year in while Scott found himself alone. This year, we’re hanging out quietly in our home after a week of travels (updates to follow in the coming days). It’s a great way to cap off this year.This year was all about family, from just a few weeks before last New Year’s Eve, all the way to the moment I laid my son in his crib tonight, wishing him sweet dreams and reminding myself that sometimes life is all about a mohawk.

I am grateful to 2010. Here are a few reasons why:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Thank you to everyone who provided…

… love. faith. humor. inspiration. kindness. deep thoughts. belly laughs. photos. gifts. advice. grace. hope. kisses. hugs. smiles. visits. talks. friendship. selflessness…

… and did i mention love?

I hope that I may return the favor to you in 2011.

My resolution is simple.I want to be simple. Think simply. Live in a realm of simplicity even when life is not easy. Enjoy the small things. Relish the big moments. Stop worrying. Stop thinking. Just LIVE.

May your dreams come true, your love come alive and your heart soar with happiness. Every day. If it doesn’t just magically happen for you when you wake up in the morning, make it happen. And just live.

Happy 2011.

A little girl’s letter to Santa

As per the requests of many faithful readers…

[Taken as is from a letter dated 1990, age 6 1/2 years)

To Santa

from Wendy M.

for Chritmas I want little miss magic hair. and My little Pony bride. and a new bike. and a sweater to wear for Christmas Day. and a game and a dancing ballerina doll. and candy.

I am being a good girl. and I love you. and I am leaving you cookies and a beer and a carrot for the rain deers.

Love Wendy Rose

xxxoooxo

(heart, star?)

 

What a sweet, innocent and very wise girl, eh? 🙂 You better believe that Zack’s Santa will be enjoying himself a Yuengling for many, many years. My husband, er, Santa, wouldn’t have it any other way.

 

If I had to update my letter to Santa for this year, it would probably be something like this:

To Santa,

From Mrs. Z(ee).

For Christmas I want open doors and open hearts for my son. I want safe travels this holiday for us and all of our loved ones that we are looking forward to seeing.

I’ll skip the candy and will gladly accept more time to bake my own sweets in my kitchen.

I want a shirt to wear on Christmas (or at least once a week) that doesn’t smell like sour milk.

I want to dance like crazy once every day, preferably by myself in my living room or in the shower.

I want my blog to continue as therapy for me and inspiration for others. I want myself to continue to be inspired.

I want the words “down syndrome” to hurt less. I want to smile with my Dude more often.

 

A lot of “want” going on here. My only need? To be as happy tomorrow as I am today. And to realize tomorrow how blessed I am today. And then the day after that and after that and after that. I want a part of me to always be the six-year-old whose biggest wish was My Little Pony. And a part of me to remember grown-up me makes her own wishes come true.

Love,

Wendy

PS – I know you’re not a big part of our lives yet this year, but I am so excited to start traditions all about you next year when Zack can really enoy it all. Merry Christmas!

Dedication and Celebration

Sunday was a special day for Zack in many ways.

Hopefully the first of many important steps in his faith journey came with his dedication at church. In our church, a dedication is most similar to what you would see with a Christening in the Catholic or Orthodox faiths (where I came from). It’s a way for the church family, as well as Zack’s parents and other loved ones to promise they will help to keep faith in Z-Man’s life and to teach him all he needs to know about being a good person. Nope, GREAT person.

We were one of four families who had little ones dedicated on Sunday. One by one, Pastor Wayne would snuggle up with the child, introduce them to the church and say a prayer over them. We also were presented with a Faith Journey Box for Zack to keep all his church and faith collectibles in over the next many years and a white rose to mark the occasion.

 

 

 

 

 

Another Proud Momma moment came watching Zack cuddle in to the pastor’s shoulder as the amazing man carried him down the aisle that Scott and I walked down as man and wife just over a year ago.

 

 

Then we came home to enjoy an early Christmas with Scott’s parents and grandparents since us three are heading out to New Jersey and Massachusetts for celebrations with my family.

 

 

 

 

 

 

 

 

 

 

 

We loved the gifts, we enjoyed the ceremony and we appreciate all this fuzzy-wuzzy l-o-v-e.

 

 

 

It’s beginning to look a lot like…

… a frenzied Momma preparing for the holidays while working full-time (and then some), taking care of baby, trying to get quality time with Handsome Hubby and counting the days and hours and minutes until my super-dooper Christmas vacation traveling through New Jersey and Massachusetts.

Phew.

No wonder my licked Christmas card envelopes are going to smell like Pinot Grigio.

 

 

 

 

 

 

I am, underneath the build-up of stress and anxiety and the apprehension and absolute joy and excitement about our travels, I am still the little girl who wrote to Santa, bribing him not with cookies and milk, but with a beer.

 

 

 

 

 

 

I am overjoyed every time we receive a new adorable photo card from our friends and family with little ones.

 

I feel at such peace running my hands over the ceramic Christmas tree my mother made with her hands years and years and years ago.

 

 

 

 

I gaze, with Zack, at the lights on our tree — those lights that are turned on first thing when I walk downstairs in the morning and stay on until we go up to be each night.

 

 

And the Christmas music that is probably driving my mother-in-law absolutely crazy when she’s over baby-sitting still hasn’t gotten old to me.

 

 

I am in a beautiful place in so many ways. And I still bribe my “Santa” with beer.

And promises of a lifetime of love and all that stuff, too. Oh, and cute babies. REALLY cute babies with mohawks.

 

Scenes from Turkey Day

It was a fantastic day here yesterday — definitely the best Thanksgiving I can remember having.

Scott and I hosted his parents and grandparents as well as my sister, brother and sister-in-law who are staying here for a couple of days. It was a great group!

We enjoyed turkey and about 500 trimmings made by Scott, a table full of desserts, non-stop conversation and a lot of laughs. Then, the younger crowd enjoyed a night of games.

We’ve been relaxing and being a bit lazy all day today, but I’m sure we’ll get our energy back soon enough and will continue to make a lot of great memories tonight and tomorrow.

For now, enjoy a glimpse or two (or 10) into our special day and Zack’s first Thanksgiving.