A simple day

My favorite days are spent in pajamas, with no make-up. Yesterday I grossly forgot to brush my teeth until about 4 p.m. You see, I was having too much fun with a handome little man.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

He peers up at me from underneath the dining room table, another new trick now that he’s crawling further and faster. I feel a tug on my pants leg, look down to big blue eyes and then, right on cue: “Ma” with a smile. My heart melts and I have an absolute out-of-body experience as I try to wrap my head around this growing, loving little boy that once grew inside of me.

 

 

 

 

I hold him a little closer, as if I can feel his independence taking him away, at least in the form of fewer snuggles. Some nights, I creep into his room to the hums of Scott’s snoring in the background, work clothes still on, holding my heels and I just stand over him, sometimes caressing a foot and whispering “I love you” over and over and over.

 

It’s turning chilly here, temperatures in my favorite range of the mid-60s. Zack and I both don our comfy sweatpants and enjoy the slight breeze that blows over the scattered toys of the newly-rearranged living room. We retreat to the backyard when we can because I think we can both sense that this Autumn will quickly pass and that soon it will be sledding and crackling wood in the fireplace.

 

Last night when Scott got home from work, I begged him to take a walk with us, like old times. He quickly and happily agreed. With Scott manning the two beasts — our slow-walking adopted Greyhound and Izzie, our sprinting, circling, barking Yorkie — we put The Dude in his new umbrella stroller, where he loved the freedom, spinning around to watch the dogs and look up at his parents, all the while the sun landing softly on his light blond locks.

We marched past the fire house across the road, taking up most of the street with our rag-tag posse, up the hill near the church where we were married nearly two years ago and up to the tennis courts where we used to let the dogs run wild to release energy; where we talked about our future while I laid a hand on my huge belly.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I love our little town. I feel secure here and surrounded by beautiful, quiet comfort.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

It was just a great, simple day. I didn’t get much done and I didn’t exactly look the part of a supermodel. But our little family was happy.

I got quiet last night and Scott grew concerned, especially since my emotions have been up and down these past few weeks.

“What happened to your smile?” He asked, half-expecting a fight of some kind.

“I’m just keeping it inside, thinking about all these things that are making me so happy at this very moment,” I said.

I wanted to tell him it was him, it was Zack, our home, our town, the culmination of it all that was making me feel very, very blessed and loved.

 

 

 

That a simple day made me so very happy.

We felt the love

Just a few weeks ago, Scott and I didn’t even know if we had the strength to hold a birthday party; we could only focus on a year anniversary of the hardest week of our lives.

We were sinking and needed a life preserver. A lifeboat. Something that could help us swim. Maybe even those lil swimmies kids wear on their arms. Man, I hated those.

Anyway, our orange inflatable “bubbles” as they were called during my childhood, arrived, once again in the form of the National Down Syndrome Society. NDSS really has a way of turning things around for us.

I sent out an e-mail inquiring about setting up a donation page, with little ambition, a lot of nerves and some skepticism. And a lady named Pam came into my life, via my inbox, helping to soothe us and creating a great donation page, all while staying in steady contact and never once outwardly commenting on my plethora of e-mails.

Today, $2,000 and 40 donations later, Pam completed our thank-you process and shared a photo or two of her very handsome Mr. Simon, another beautiful blonde fella.

So, I guess what I’m getting at is that life is oh-so-funny sometimes. And so full-circle. (Hellooooo, NDSS!) Thank you to those who donated in Zack’s name and thank you to those, like Pam, who have supported us along the way.

You can continue donating at Zack’s page, so don’t hold back! And stay tuned for another fundraiser down the road. I can’t wait until Zack truly realizes how much more rewarding it is to give than to receive. We’ve been so blessed to learn that lesson this summer.

 

So, thank you.

 

Cornfields remind me

It’s been a really good couple of days. You know, the kind of day where first thing when you wake up and last thing before sleep, you just feel at peace, all through your body and mind?

That’s where I’m at lately.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I may not be 100 percent happy or be getting enough sleep or relaxation or whatever else (maybe I am), but I’m definitely just at a peaceful spot and I’ll take that.

 

 

My mind travels at least 60 mph to match the car on rides home. Watching the corn grow taller and taller, the breeze a little cooler at night. And I think about this season’s feelings five years ago when I first met Scott. His hair was longer and blonder and I had a huge crush on him. I loved listening to him sing country songs with all the windows down, laughing at myself from being so far from where I thought I wanted to be. Silly girl.

And look at us now.

 

 

My job is going well, really well, but I still take the most pride in my job as Momma, whether it’s just stealing a few moments before bedtime or catching a few grins before I leave for work. Whether it’s an entire day of smiles or rocking that wicked teething process away for a few moments. Whether we’re by ourselves or surrounded by the love that comes in Mommies exchanging wise conversations without even talking, watching each other for cues from 20 feet away. Whether it’s the immense pride I feel when quicker crawling is seen or “Ma” escapes his lips, those big blue eyes staring only at me.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The end-of-summer madness everyone else is feeling I’m oblivious to — I get to watch it go by slower, slowly. As others try to grab at last get-togethers before school begins or the final vacation of their year, I enjoy my year-round career, thinking I never have to wish for one season to slow down or another to speed up; I get to just live it at a pace that feels just right.

The passing of a football between big kids, the passing of sleepy babies from hip to hip.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

<—- Apparently, the change of seasons also means you need to update your diaper bag. Z-Man had no warmer clothes. So, the hoodie belonged to a nearly-three-year-old girl and the camo pants were thanks to buddy Owen No.l .

We’ve since updated to try to move a little higher than World’s Worst Parents.

 

 

 

 

I think I might cry when the corn gets cut.

It’s been a good, good harvest.

 

 

 

 

Celebrating

Little Man is ONE.

We celebrated the best we could, with heavy hearts for Uncle Paul and his family and with heavy hearts and minds for our own birthday boy and his journey. But we celebrated nonetheless. We celebrated the best we could.

Funny story. See, in early Spring, Scott and I decided we weren’t going to do anything with our backyard this year. We’d do the weekly mowing, but no gardens, no veggies, not even much weeding.

Then we decided to have a birthday party in the backyard. Whoops-a-daisy.

So, in the past couple of weeks, we scrambled to make up for two seasons’ worth of dirt, leaves, random flowers, four-foot high weeds and a lot of “stuff.” While we were both out there for hours at a time over several days, Scott really busted butt on getting the yard (and all those inflatable goodies we purchased) super-dooper ready for some company.

Zack was a big help, too.

I made myself useful by buying out all of Target — a kiddie pool, a sprinkler, gift boxes for kids and enough “1” paper products to kill a small forest.

And then, the morning of the party, it started raining.

Eh.

So, the dining room table got shoved to a corner, rocking chairs and footstools and end tables were carried into the garage and we made do inside.

And then the door started flying open with loved ones.

We had family — Scott’s parents and grandparents and my dad and stepmother who traveled in from New Jersey and my cousin Dan who came in from Virginia.

Cousin Dan showed off his crab-crawl moves to Zack, who was thoroughly impressed and my dad just drank in every bit of his youngest grandchild.

And then there were our littlest friends — Sophia, Olivia, Hailey, Lexie, Owen, David, Chase and l’il Reagan. Fighting over the ice cream bucket in the midst of all of Zack’s baby toys; interacting with each other between attempts at standing, awkward steps and “ooohs” and “bahs” and “Ma” and “Da-da”

And I can’t forget all the Mommy and Daddy friends. The ones who have rode along on our journey this past year — compassionately, knowingly and lovingly. I fought back tears a time or two as I just took it all in — where we’ve been and where we’ve going and who’s along for the ride.

And we can’t forget about the Big Kids and all the fun they had, too…

And then, we had the honor of being invited to Birthday Buddy Chase’s party the following day. We love his Mommy and Daddy (and little sister!) very, very much and are so happy to see Zack and Chase grow up together.Let’s throw in David and Owen, our other special one-year-old boy buddies and alternate birthday parties, OK, ladies?

It was a great weekend, a great celebration.

For a great, great little boy.

A great man

“85 and sunny here in Hong Kong. Love and miss you all. Can’t wait to get home. Wendy/Scott, Please send energy pack.”

That was a typical Uncle Paul e-mail from his travels across the world. UP’s Mafia Wars advancement was a family joke for a long while. Scott and I spent a long time the other night laughing over memories like that.

 

 

Or the time we drove past some horses in a field near our home during a vist from our city-folk aunt and uncle.

“Look, Alice, it’s a donkey farm!”

 

 

We didn’t make it to NJ for the services this week after all, but I still was able to feel as though I was there in spirit, through the updating text messages from my cousin Becky (thank you, I love you) and the kind words written about my uncle online.

However, in the short time I have known him, he’s changed the course of my life more than any of my close freinds. He’s changed my perception of myself, and now I live life constantly striving past what I think is possible.

Paul had such a big personality and was always quick with a joke or a story.

He has left imprints on so many that knew him.

Work hard, Play hard. This is the phrase that perfectly sums up my friend Paul. He was a dedicated professional who offered nothing but his best in everything he did. His commitment to lifelong learning was an inspiration to me and will continue to be so. More importantly than all of this was the size of his heart.

I can remember walking into Paul’s office around 15 years ago, the sun was shining through the window, there was a map of the world on the wall, and, for whatever reason, we ended up discussing the meaning of the word “tangible.” The outcome of the discussion may have been inconclusive but we finished with big smiles on our faces.

 

Uncle Paul was a man of technology and although it sometimes drove his wife a bit crazy that he was always near a BlackBerry or laptop, we loved that he had memorized our wireless internet code after only one visit. Or that we could always count on a plane schedule or weather forecast in a mere 30 seconds.

 

I loved the videos — like the ones from the time the four of us went to Frank Lloyd Wright’s Fallingwater. (Just ask Chochie about “Law and Order”)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Whenever there was a visit from or with Aunt Alice and Uncle Paul, you could always count on a few things: wine, yes. laughing, yes. trying or exploring new things, yes. And cooking. Uncle Paul and I loved cooking with each other. He laughed at how inept I was at basic food prep and I took in every bit of advice on cheese graters and baking timelines so seriously.

 

 

 

We would kick Scott and Aunt Alice out of the kitchen and just mill about my small kitchen, making a mess and talking about all sorts of things.

Uncle Paul made a shrimp dish one time while we were visiting that was so spicy we laughed until we cried. Aunt Alice made the best faces. Uncle Paul stood by his dish, and you know what, it was pretty good. I loved those times.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

While Uncle Paul was traveling around Asia and elsewhere, I looked forward to his near-daily travel logs. Bits and pieces of his journeys — exotic foods, spiritual places, beautiful photos. Then, he started bringing home newspapers from different countries for me to collect. I loved that he thought of my passions and wanted to be a part of it.

 

And then, when he found out we were pregnant (he and Aunt Alice were two of the first people we told!) he started collecting beautiful outfits from his trips for Zachary.

He smiled from ear-to-ear when we brought Zack downstairs in one of those outfits during one of their visits. He was so proud.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My uncle never had children of his own, which is surprising, given how loving and tender he was with both his and our furry children and with children. He loved his nieces and nephews so much. He loved Zack so much.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We were so blessed to have spent a last great family gathering with Uncle Paul just last month during our trip to Jersey. It was Zack’s first time swimming and I spent a solid hour watching as Uncle Paul sat himself as close to the pool as possible so that he could watch Zack’s latest adventure. Uncle Paul was mesmorized by the Z-man, watching his every move and smiling at every splash. I felt so lucky and so loved in that moment and I will tell Zack about that for the rest of his life.

 

 

 

The day I found out about his passing, we had a birthday card from Aunt Alice and Uncle Paul sitting on the table. Scott hadn’t opened it, so I did, tears already streaming down my face.

In it was a check, with a note in Aunt Alice’s cursive saying Uncle Paul wanted Zack to have  little swimming pool after seeing him enjoy his first swim so much. I smiled to myself and thought how beautiful it was, that even in his last days, Uncle Paul was thinking about making Zack happy — again.

 

 

To say he was “a great man” isn’t enough.

To say that he will be missed isn’t enough.

To say that he was loved isn’t enough.

He was proud. He was so funny. He was interesting, knowledgeable and warm.

He was incredible.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

When I was going through a tough time last September, I received an e-mail from UP.

I don’t usually listen to the radio a lot – but I am very inspired by music.
This morning on the drive to work I heard a certain song that made me think of you.

I just want you to know that if ever there is a need – you can “Lean on me”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And from the days after Zack’s official diagnosis: “Stay well, stay strong – kiss the little fellow for me.”

Will do, Uncle Paul, will do.

xoxoxo

 

Perspective

Life is kind of funny.

 

We had a death, a tragic death in our family today. My heart aches. I think about my aunt and her heavy heart and unimaginable place right now. I feel the 300 miles between home and here so very much right now.

We will make changes, amend schedules, do what we have to do. We will go home and be with family.

 

Because that’s all that matters right now.

 

Birth posts, party decorating, none of that matters right now. Just showing and sharing the love.

 

Hug your loved ones tight. Tell them you love them. Make sure you say the words you’re thinking. Take nothing for granted. Pray, hope and just live.

 

 

 

Reactions to a diagnosis

Continuing the week of birthday-related posts:

 

From Aug. 14, 2010, one week after Zack’s birth:

Hello everyone!
Thank you so much for all of your love, well wishes and support since Zack’s birth one week ago. As you’ll see by the end of this e-mail, it’s been quite a long adventure these past seven days for all three of us and each of your thoughtful gestures has helped us move through a challenging time.

First of all, let me emphasize that our baby is perfect. He is our little miracle that has made us the luckiest two people in all the world. I think I can speak for Scott in saying that being a parent has been the most amazing blessing of our lives so far.

Now to the reason for our e-mail.
From when Zachary was first born, our pediatrician at the hospital and several of the nurses in the obstetrics department noticed that the baby may have several of the signs and factors of Down Syndrome. The biggest of these signs was our little one’s beautiful face. It doesn’t quite look like either one of his parents and has things like upward-slanting eyes, a smaller mouth, flatter nose and diminutive ears. The physical appearance of his face was the first and most striking of the signs present in Zachary that prompted a chromosome test to be taken and sent away to see if the tell-tale sign of Trisomy-21 was present.

The hospital pediatrician, who has been amazingly dedicated throughout this entire process, called the lab today on his day off to see if results had been determined. He then called us to let us know that Zachary did test positive for Trisomy-21.

From downsyndrome.com:

What is Down syndrome?

Down syndrome is a developmental disorder caused by an extra copy of chromosome 21.  This disorder is caused by an error in cell division that results in an extra 21st chromosome. Having an extra copy of this chromosome means that each gene may be producing more protein product than normal. Cells seem to tolerate this better than having not enough protein, or having altered protein due to a mutation in the DNA sequence.

The condition leads to impairments in both cognitive ability and physical growth that range from mild to moderate developmental disabilities. Through a series of screenings and tests, Down syndrome can be detected before and after a baby is born.

The only factor known to affect the probability of having a baby with Down syndrome is maternal age. That is, less than one in 1,000 pregnancies for mothers less than 30 years of age results in a baby with Down syndrome. For mothers who are 44 years of age, about 1 in 35 pregnancies results in a baby with Down syndrome. Because younger women generally have more children, about 75 – 80% of children with Down syndrome are born to younger women.
It could be years before we really know to what degree Zack will be impaired — if at all! — and so we are approaching this whole thing as strongly and with as much hope as possible. He is our little boy and we love him just as much if not more than before. We plan on giving him every opportunity possible and letting him know that “no” is not an option. There are great programs in our area that will work with Down Syndrome babies from birth to help them develop at the same schedule as most other children, from crawling to talking to school things, etc.

There are many positive signs that perhaps Zack does not have a very serious variety of this disorder…
One of the major factors seen in most Down Syndrome patients are heart problems, often times very serious ones that require open heart surgery or that will seriously affect the person’s life. We went to a pediatric cardiologist the other evening and although we need to go back in two weeks for a re-check, Zachary was clear for all of the major/more serious issues. He did have two small holes in his heart, but the doctor was very confident that those would heal on their own within a year. This is so huge! We are so grateful that this doesn’t seem to be an issue.

Muscular tone is another common sign of Down Syndrome. Those babies with the disorder tend to lay motionless and limp and our boy is anything but that. He is strong in his his muscle tone and squirms and wiggles his way most of the day. He has quite the grip, too! The pediatrician was so impressed with his muscular tone that he started doubting his diagnosis because of it at one point. Go, Zack!

Zachary is a perfect baby! He eats extremely well (and they say those with Down Syndrome usually can’t breast feed successfully — ha! we prove that wrong 10 times a day!), seems to digest things perfectly well (you should SEE some of these diapers!), tries to lift his head, shows us a little attitude now and then and loves to show off his beautiful blue eyes as often as possible. He’s even rolled over to his one side a couple of times now.

We wanted to let you know because you are a part of our support system and because we want you to be aware of why we were in the hospital so long, why we maybe haven’t seemed ourselves the last few days, etc.

We also want to let you all know that by all means, Zachary is a normal child to us. The pediatrician we will be seeing from now on told us that Zachary is the “normal” one and that the rest of the world is screwed up. I believe that. Please join us in watching Zack show the world — and all these doctors and painful tests — that “no” is not a possibility and that you can accomplish anything with love and perseverance, prayer and hope.

We are never given more than we can handle.

Thank you for your continued love and support. Be prepared for many more photos soon!

Love,
Wendy, Scott and Zachary
xoxo

*    *     *

And then the love came flooding in:

I love you more Wendy — and this time it has even more meaning. You are an incredible strong young woman and to share your story with no hesitation that this is not a setback but a “bring-it-on” challenge impresses the hell out of me; you are a very brave person. Only you could embrace this and I am so proud of you.
Zack could not been born to two more loving people and it’s thru your strengths and convictions that he will do great in this world. He has a mild case but none the less he has Down’s and we will all love him just the same and we will challenge him and treat him like we have our other nephews/nieces/cousins. Zack is going to prove those doctors wrong, he will show us all his greatness.
God loves the three of you and I know he will be with you every step of the way.
It sounds like from your descriptions, though, that Zachary will be proving everyone wrong. No  matter what, you have a beautiful son who will always be the light of your life. I can say that unconditionally as a mom, that your boy will be your shining joy, as my boys have been mine. Every gift from God is special.
thanks for sharing the news with us. i said to xxxx when we read this that this little boy could not have better parents, grandparents and the rest of the friends and fam. to raise him. obviously, this changes all the long term dreams you may have had for him but that is life isn’t it? always changing while we are busy making plans.
it is really positive that he isn’t showing a lot of the signs of typical (more advanced?) trisomy-21.  he is indeed a beautiful little boy. if there is ever anything we can do–i know we are pretty far away but ya never know–please let us know.
i can see it in your eyes that you are SO FAR in love with this baby. i do think the world is still his oyster.
You two are the most amazing people I know. Zack could not have been born to stronger, more caring parents. We’re rooting for the three of you every step of the way!
While I wish your Zack did not have to endure this, it does say to me that someone up there trusts you a great deal. I cannot think of a child who will be more surrounded by love, support and opportunity.
I am thrilled for both of you (welcome little Zachary!) but most of all, I’m thrilled for Zachary because he has the best parents in the world. I’m not a super spiritual person but I do believe in God and I’ve always believed that God chooses people for certain reasons and I know he blessed you with Zachary because he’ll have an inimaginably beautiful life with you two running the show! You’re baby is perfect and what ever obstacles are ahead – if any! – I know you’ll tackle them as a family and always emerge stronger!
You talk about you two being the luckiest parents in the world, but we think Zachary is the luckiest baby in the world. He has two parents who will give him all the love and support he needs throughout his life. He will have a life that lots of children will only be able to dream about and he will have opportunites that lots of children will never have.  We look forward to the day when we can have our children play together and they can create their own friendship as we were so lucky to have done ourselves.
What an amazing outlook you have honey.  Zack is going to have a wonderful life because of you and Scott.
First of all, HUGE congratulations on your beautiful baby boy! He is
absolutely adorable!! I am happy to hear that the delivery went well
and that you are back at home resting.

As far as Zack’s diagnosis goes, I’m sure it must have come as a
shock. However, everything is going to be fine! Children with Down
Syndrome have opportunities these days that they didn’t have even 20
years ago, and as you said, you really don’t know yet how he is going
to be impacted yet. He is a completely normal kid who is going to have
a wonderful childhood. You and Scott are great people, and Zack is so
lucky to have you as his parents.

I didn’t write until now because I figured you were getting hit from all sides and needed a break. I just wanted to simply say that I love you and that new baby boy of yours and know you and scott are the number one people for the Zac.
I never expected to see, feel or experience so much love. I felt it right away, those first weeks in August, and I feel it through to this very day.
I love that some of you ask constantly about therapy and new exercises and achievements and then even the “normal” baby stuff. I love that you’re as curious as we are and as interested, too.
I love that you have donated in Zack’s name; that you have RSVP’d to our party this weekend; that you sent an e-mail or a card to say you understand.
I love your love.