There’s always a birth story

We were lucky from the beginning. I always believe that “lucky” is one of those words that is extremely overused, taking away from the true power of its meaning. But I stand by my choice of “lucky” in this case.

Scott and I were lucky in the fact that it only took us two months to get pregnant. In fact, we would wind up having our first child before we celebrated our first wedding anniversary. And we had a healthy, relatively easy pregnancy (At times, I can block out the bedtime “morning” sickness I experienced nearly every night for about a month; or the stomach virus Scott and I had for a week in the second trimester; or the hottest summer on record in 30 years… )

So yes, we were lucky.The proof is in the huge blue eyes staring up at me right now, saying “ma-ma-ma-ma-ma.”

This is Part One.

We knew long before we were married that we would start our family (hopefully) right away. We had been together for several years and had already done all of the “fun” stuff together — dinner dates, bar trips, road trips and home improvement projects. We would have started trying right away, but there were those amazing swim-up bars on our honeymoon. Mmm.

I was actually more devastated than I had expected when we got our first negative pregnancy test. I guess that was how I realized I really and truly wanted a baby.

Luckily (there’s that “lucky” word again) we didn’t have to wait long.

On a whim, I took a pregnancy test in early Dec. 2009 after several days of feeling like I had a cold. The shrieking from the bathroom caused Scott to run up the stairs two at a time intending to kill the mouse he thought was causing the ruckus. He was so excited when I told him the news (“What does that say?” I asked him first) and just smiled and said “Merry Christmas.”

We promised each other we wouldn’t tell anyone for a while. And then I got in my car, drove to work and called or texted at least five friends on the way.

Not even we knew the little one joined us for Thanksgiving.

And then we pulled a fast one on some loved ones in December and January.

(We got really good at switching Scott’s empty wine glass for mine… he took a lot of wine for the team)

My Christmas present from Scott that year? Maternity clothes!

And then, once we were able to tell my parents during their February visit to see us (through Valentine’s cards addressed to “PopPop” and “Nana”), we let the cat out of the bag and enjoyed a beautiful Spring fille d with belly pats, love, advice and absolute peace.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

With the hot summer days came warm hearts in not one, but TWO bridal showers in two separate states for two distinct yet equally amazing groups of women I absolutely adore.

There was so much love and I remember constantly telling myself over and over again in those days just how LUCKY I was. (There’s that word again)

And my son brought to me new friends. Mommies of little boys and girls who would become his friends.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Like sweet Owen No. 1 and his Mommy Reva, who gave birth just two days after Zack’s Big Debut.  (The hardcore natural way, by the way!!!)

(Sidenote: The other night, Reva was telling me about how when she found out about Zack’s DS diagnosis she researched everything she could on DS. “I want to be able to provide Owen with answers to any questions he might have,” she said. And if I weren’t driving, I would have hugged her right there in my front seat, Bear Hug-style, possibly not letting go for at least 10 minutes. Our talk that drive home really meant a lot)

And then each day suddenly felt like an eternity and I could no longer see the light at the end of the tunnel. Actually, I couldn’t even see my feet anymore.And did I mention how hot it was?

 

 

 

 

Then came the early morning hours of Aug. 5.

I couldn’t sleep. I kept having these weird stomach pains. Nope, actually they were a little lower. No, actually sort of like a cramp. Oh wait, it stopped. Nope, couple minutes later that pressure is back. Then again. And again.

I watched the clock.

OW. 3:42 a.m.

Owwww again. 3:46 a.m.

Ouch! 3:50 a.m.

I got so excited. I thought maybe my water would just burst right there and I’d spew a baby out in a few hours.

Scott’s alarm FINALLY went off and he looked at me really strangely. (What, your very-pregnant wife is just randomly sitting up at the edge of the bed, fixated on the clock?)

“Don’t be alarmed,” I told him, “But I think I’ve been having contractions every 3 to 5 minutes for the past few hours.”

My cool, calm and collected hubby shot out of bed.

“Do you need to go to the hospital now?” He asked, pulling clothes on and reaching for his glasses.

“I think I’ll just wait a bit,” I said. I thought he would kill me.

After an argument about whether or not I should go or just call the doctor’s office when they opened, I sent him to work, called my boss and called off of work that day and passed the time until 9 a.m.

At 9:02 a.m., I called the doctor’s office, explained what had happened and was told it would be a good idea to head to the hospital. I called Scott’s boss (who had better cell phone reception) and just casually mentioned they wanted me in the hospital for observation, could Scott come home?

 

 

 

 

 

And my husband made it home from his job 35 minutes away in about 15 minutes, running up the stairs, panting. “What’s going on? ” he asked. “Are you OK?”

Off to the hospital we went… only to find out I was indeed having contractions 3-5 minutes apart but that I wasn’t even an teeny-tiny bit dialated. The nurse suggested we walk that evening to speed things along.

So my husband did what any dad-to-be would do I’m sure, and called his parents inviting them to go to the local golf course. I walked nine holes (after my mother-in-law tried to throw the baby out of me by doing some off-path driving in the golf cart).

<— the cell phone was being used to keep track of my near-constant contractions. This Momma is NOT happy.

We wound up back in the hospital the next day and still no dice. Our second false alarm, me becoming more and more frustrated by the minute, Scott wondering if I really knew what contractions felt like.

And so I became desperate.

Like push-the-lawn-mower-uphill-for-an-hour-in-100-degree-heat-that-night-kind of desperate.

But it worked.

I was jerked out of bed around midnight by the most painful sensation I’ve ever experienced. And because I didn’t want another false alarm, I spent 10 hours pacing our house, hunching over in agony every 90 seconds. It was horrible. I should have gone to the hospital right away, but all those false alarms, remember?

Finally, we went to the hospital.

Arrived at 11:30 a.m.

5 centimeters dialated!

 

 

 

 

Into a hospital gown, IV in arm and a new room by 12 p.m. Part of me became sad. I had loved being pregnant. Maybe I was the only woman in the world to really enjoy all nine months, but I did. I was at my happiest, my calmest. I was full of so much joy.

 

At 1 p.m., epidural was relaxing me quite nicely and a popsicle was making my world go ’round. 7 centimeters dialated.

Then 8 centimters.

Then trouble.

The baby’s heartbeat was sinking lower and lower (it really had never been where it should have been but as labor progressed and contractions intensified, it was becoming more dangerous).

We tried different positions. Fluid was injected to give the baby some better wiggle space. A couple of medications.

Nothing worked.

And my popsicle was taken away.

At 3:30 p.m., Dr. L told us she had tried everything she could but that we were running out of time. We would be having a C-section within the hour.

Suddenly it was a mad dash to locate my glasses (left in my car along with our other belongings because we worried it was another false alarm), for Scott to don his scrubs… and then… probably only 10 minutes of waiting that felt like an eternity.

I wanted to panic, to scream “NO, let’s try something else!” I had to remind myself to breathe after every third breath because a knot kept forming in my stomach.

I tried to act cool, like an unexpected, unplanned surgery was no big deal.

And I thought about the baby. About the baby we discovered was a boy, that we named after flipping to the last letter in the book of 100,000 names and finally agreeing on Zachary. About the kicks and hiccups I had been feeling for months. About the smell of baby lotion. The boxes of diapers in the nursery at home. The crib waiting for tiny hands and feet.

 

 

I had read What to Expect When You’re Expecting and a dozen other books. I had attended my parenting and childbirth class. I had eaten right, taken my vitamins and rested as much as I could.

 

I was ready.

 

 

 

I looked out the window as the nurse came into the room to wheel me into surgery. I recalled the way the warm sun felt on my ponytail and bare arms as we had walked into the hospital, smiling, laughing, full of hope and excitement. I told myself to remember that feeling.

And I’m glad I did.

Because when we walked out of the hospital five days later, I didn’t even notice whether the sun was shining or not.

I just saw that the world had kept going outside while inside those hospital walls mine had come to a screeching halt…

Crawling and coping

Randomness is coming. I don’t know where this is going.

*  *  *

He passed the first series of heart tests. (Heart issues are common among children with Down Syndrome)

He finally passed his hearing test. (Ditto for hearing problems)

He ate so well. (Those docs worried about this, too)

He followed things with his eyes. (A frustrating problem in the beginning of therapy)

He passed a toy back and forth between his hands. (Why does he favor one hand?! Why does it matter?!)

He tolerated bellytime. (Please no more screaming fits)

And then there was the long-awaited, hold-you-breath-for-it sitting, just recently. (We waited so long)

And then one night, a joke about our “easy” days being numbered. Moments later, our son crawled across the floor to chase a toy. As if he had been doing it for all of the weeks and months we hoped and prayed we’d see it soon. As if it were nothing at all. Our little guy crawled, over and over, sitting up, looking at us and flashing a smile as if to say “what are you guys all worked up about?”

 

 

 

 

 

 

 

 

 

 

 

 

He’s still uncertain and it’s now turned into almost a crab crawl, our physical therapist Miss Kathleen remarks, with his right leg stuck straight out to the side, inching forward using mostly his left leg and those strong, strong arms of his. We let him do it his way, so proud of his accomplishment, working gingerly with little tricks here and there to get those legs both behind him, zooming faster and faster. And already we move on to huger tasks and more impressive accomplishments.

 

Standing is next.

Holding on to the edge of the couch, reaching up with wide, curious hands. Pulling up on his parents.

 

He is taking off, we know this. There will be more accomplishments and there has been so much to celebrate already just in the past few days or weeks.

 

 

 

 

*  *  *

But still we hurt.

Scott and I find ourselves in a place we hadn’t imagined. Where the anniversary of Zack’s birth brings down a floodgate, emotions overtaking us as we see a different set of milestones than we had expected. Where the fact that our son can’t even grab at or feed himself his birthday cake is not lost in birthday party planning.

We’re skipping the cake, by the way, because it really is that hard to face that one.

 

 

Have you ever been to a first birthday party? We have. We know all the “criteria,” all of the usual moments and comments on first steps and all that jazz.

We are proud, proud parents. We love Zachary with every fiber of our soul. We have preached nothing but positivity and hope. But yes, we fall, we falter and we fail.

For us, next week is a one-year-anniversary of some of the worst days of our collective lives and of our life together. The birth of our son was every joy we hoped it would be, but it was followed by dark clouds that brought about uncertainty, sadness, anger, worry, concern, fear. This is an anniversary of a future we still can’t wrap ourselves around, 357 days later.

I have only three photos of myself with Zack in the first five days we spent at the hospital. I was leafing through a baby album of his the other day when I found myself flipping back and forth between those photos. In one, I had no idea that Down Syndrome had already entered my world. I was a happy, doting mother, ready to go home with my family and start our world together.

And then I became a happy, doting mother who was overcome with fear for her son and hurt for her husband, with a lump that still finds its way to my throat now and then.

 

 

 

 

*  *  *

Earlier this month, I spent a solid two weeks crying each day on the way home from work. Work was fine, everything was great. It just kept.hitting.me. The Down Syndrome thing, not like it’s any surprise at this point. It just snuck on into my 20-minute drive, found itself in lyrics of songs on the radio or in families passing in crosswalks. Sometimes, it was a guest at the front desk at work. Sometimes, it was my husband’s eyes.

And then one day, I came home, tears wiped, shoulders up, holding on with all of my might. And Scott spilled the beans. That he had been facing those tough days, that it was harder now than ever before. And we talked. We talked so long and it felt so good. I cried tears so hard that I was sobbing. Sobbing like I had to put the baby’s spoon down and right there in the middle of his dinner, just pull him up from his high chair and hold him in so close to me, soaking his shirt with sadness and praying he would forgive me for being so weak.

It felt so good to share it with Scott. To link arms in the end, give a nod and a goofy smile and know that we would make it through together.

We laughed out loud for so long when Zack started crawling that first night — it was like our son was saying, “Knock it off, ‘rents, I’m doin’ just fine.” And he is.

 

 

My mind is in a million places these days, thinking about loved ones who need my strength and whose battle is much tougher than mine. (I love you, UP)

 

But at the foreground is a beautiful, beautiful, beautiful, beautiful boy.

 

 

I have two more days off with the little man and I intend to soak up every minute with him. Every smile. Every crawl. Every attempt at standing. Every babble. Every yawn. Every drooly kiss.

 

 

 

 

This morning, we’re crab-crawlin’ our way into trouble. We have found two diaper bags, a car seat, three stray burp cloths, a changing pad, a garbage can and NOT the three trucks, two ice cream buckets and 40 other assorted toys in the living room. Just seeing that right leg fly out to the side, palms flat on the ground, with intermissions of excited dancing in between moving from Point A to Point B… it all makes me feel such a happiness I never imagined. I have been smiling all morning.

 

 

 

 

 

 

 

And one more thing that has helped me so, so much?

The $809 raised so far by all of those who love Zack and support me and Scott. $809 which will go toward families like ours, first years like ours, hope and futures like ours.

Thank you for all of the amazing donations so far — and please consider a gift if you have a few extra dollars lying around and are able to spare a pizza delivery this week or a magazine at the supermarket or that new shirt that might go on sale next month… It’s the best birthday gift we can give Zack.

You can donate HERE.

Speaking of our donation page… exciting news coming up in a few days regarding that!!!

 

Have a great weekend. I will! 🙂

 

 

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.


Pinch me

I’ve had a long, beautiful dream lately. So long and so beautiful that it took me away from my blog for a couple of weeks. I had to swim in its waters, breathe in it thick summery air and just live it.

Ya know?

 

 

My dream had a drive down familiar roads. Roads that lead home, no matter how far away I’ve moved or how long it’s been. Where the high school looks different but the slope of the hill feels like just yesterday. Where the house I visit isn’t the house I grew up in, but it’s got a man — my Papa Bear — who lets me sit on his lap and tell him I love him, after all these years, still the baby. Now we catch up in the early morning hours as my baby crawls at our feet, talking about work over coffee. Borderline disappointment when footsteps around the corner, a smile to each other and catching up is over for now.

 

 

 

I dream of two tanned little California girls, who mumble “Aunt Wendy” in that uncertain I-love-you-but-it’s-been-a-while way that kids have about them. They run across the green grass together, their giggles contagious and infectious. My husband creates a high-pitched voice to play pretend with our nieces and I may be the only one in the room who knows how happy that truly makes him.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My sisters, not through blood but even stronger bonds, are sitting next to me and that’s enough for me. But there’s more. Hard-to-say, rushed goodbyes, loving each other’s children, chatting with their husbands, love in so many ways.

 

 

 

 

 

There is a wedding in my dream. The whole family gathers. We laugh at funny garter moves and all collectively smile at the first dances. There are moments of quiet reflection, where I’m sure we’re all thinking about the strength and love that makes this group of people what it is today. I keep staring at my father across the reception hall, knowing he is just loving this — three daughters together, a happy family occasion… the world is good.

The family that raised me, that made me who I am today. It was a happy day.

 

 

I am dreaming, sweet dreaming of family. The kind that puts on a strong front, that sacrifices for precious moments together. The giving of presents, but more importantly, the sharing of love. Like not a day goes by. Like a beautiful woman’s birthday isn’t about her, but about those she loves, like the rocking and patient holding of a sleepy child. Like even tough guys can be soft and heart-melting. Like sometimes, you just feel right. Right in this place, with these people, in this moment.

 

 

 

 

 

 

 

 

 

 

Sweet dreams of the man I love. We hold hands a little tighter this week and he fits in so well. “I love you” he mouths across a room.

 


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And all this time, just being a Mommy. No work, no plans, no distractions, no late nights away from Z. Watching so closely, holding so tight, inhaling his soft hair and kissing his even softer skin.

Pull into the driveway.

Pinch me. I’m still dreaming. Redneck jokes and “home-sweet-homes” and click-your-heels-because-theres-no-place-like this.

To sleep with my best friend’s arms around me, wake up in a hurry to see my son’s first smile.

 

I am dreaming. I will return to reality, but I refuse to wake up, to miss all of this.

Don’t you dare wake me up, world.