Growing

We are all growing here in the Z Family.
As surely as the neglected weeds out back and the set-aside to-do list on the table, we are all growing both inside and out, every one of us.

There is a little boy who is most assuredly not a baby anymore, growing steadier feet below him with every cautious step behind him. A boy who is still quiet and calm, chill and loving; whose love for his little sister has grown as well, into a most beautiful series of kisses on foreheads and chubby hands holding petite long fingers.

There is a baby who recently decided that she shall grow up perhaps too quickly, that she will stand up tall and take more and more steps each day; whose blue eyes, just a shade or two lighter and brighter than her big brother’s gray-blue eyes, see everything, take in everything. She absorbs and repeats one-syllable sounds (“Ack” she calls to her Big Brother each morning!) and is as equally fiercely independent as she is needing to be reassured comfort with squeezes and hand-holding. One minute she looks up at you, tears streaming from her eyes, and the next, she takes off, you already a distant memory for that blue-eyed babe on to her next climb or daredevilish move.

Their Daddy has grown, too. He has realized that it’s never too late for change and, on Monday, will be embarking down a new career path, which will bring few short-term rewards but hopefully many for him and his selfless ways in the future. You should see the way he watches his kids now, the way he remembers to thank his wife for the littlest thing, the way he makes great effort for a simple gesture.

And the Momma. She has had a very busy few months of growth. She has had to step away from some things in both a figurative and a literal sense. She has had to de-plus one love temporarily (that’s you, my lil bloggity-blog) in order to build and grow a new one. She took a chance and hopped on a plane and spent 24 long days away from her family, home and passions in order to walk independently in a strange city and yes, in order to do that growing thing.

And now we are here.
Scott and I are ready to watch our little ones do all the growing for us for a while now and are making the most of every day.

It all came together for me this week.

I was sitting in our yard on the warmest, sunniest day so far this year (Thanks for joining us, Spring!), my eldest pouring dirt in his lap with childish squeals while my littlest ripped leaves up into a box in a corner of the yard. I had been researching one thing or another for my photography business when the sun warmed my hair just right that it stopped me, right then, right there, and poured such emotion over my heart, I wasn’t sure if I should do a Crazy Woman Dance right then and there for the elderly neighbors to enjoy (and to cause them to call the cops on behalf of my poor children) or simply burst into tears and cuddle my babies close. I did neither.

I just took it in, promised myself I would continue to build these moments, to take time out for myself now and then, to feel the warmth of the sun on my head. Oh, and to wear sunscreen. A sunburn would really kill the moment.

So we have been growing here.

Addie is 21 or so pounds and just a few weeks away from her first birthday. (HOW can that be???) Her hair is look in front and short in the back and turning lighter as it comes in (perhaps another blondie?). We get asked all the time if we cut or style her hair. She took her first steps last week — the record is seven at a time, but she’s doing those bits of walkin’ more often throughout the day. She has a long torso and short legs just like her Daddy and her brother. Although we still her that she looks like mini-Momma, more and more I see her brother’s face, especially when the two of them are laughing. They sound the same when they cry and they definitely are impossible to tell apart during giggles. She is stubborn and hard-headed and loves to test the limits already — currently with eating dog food and pulling down the toilet paper, but soon I’m sure it will be with curfew and clothes and boys. Groooooooan. She has her first two teeth coming in on the bottom and will go to anyone, no matter how old or how strange they are to her.

And the Z-Man. Man, this boy just blows me away. He will be three in early August and I can’t understand when he went from a baby with DS and we went from scared parents to this moment we’re in where we have truly come to terms with his life and ours and we embrace every opportunity and relish every accomplishment. We have only three months left with his therapists and my eyes well up with tears every time I even think about these pseudo family members leaving our lives. They have been in our house every week since Zack was three months old. They watched his highs and lows, admonished us when we needed it and celebrated us when we deserved it. They’ve seen us change jobs and gain a baby and they have seen it all — our best and our worst. Zack is doing very, very well. He “gets” it, if you know what I mean. He understands when you tell him something, he understands when you ask him something. His gross motor skills are something we are all shocked by and proud of, they’re so fabulous. His communication is still severely delayed. He has all but ignored our attempts at signing lately and while he can make the best animal noises and every now and then repeats a word (this week it’s been “Come!” and “Go!”) we still have a long way to “GO!”. He still absolutely loves his books, anything to do with animals and is enjoying the open-door opportunities to should “Car!” when something drives past our house.

But those moments when it’s the two of them together, that’s when my heart is stretching out past it’s boundaries. Every bath time with splashing and sharing toys and giggles and every playground trip with dirty shoes and dirty hands and exploring tiny tunnels, my heart strings soar.

We talk often about whether or not we’ll have another baby, and at this point, we simply just can’t decide. So for now, we are enjoying our two babies. Pretty soon, I know I’ll have to stop calling them “the babies”, but seriously, let’s all just acknowledge that they may very well be “the babies” in 30 years. (If that’s the only way I embarrass them, I think we’ve done pretty well).

It’s not always easy. And it’s certainly not always perfect. Heck, I used Addie’s body to hold a restaurant door open this morning while carrying her, her brother and a diaper bag by myself. And then there was the time I sacrificed a yard stick, cell phone and broom all for the sake of editing just one more photograph.

But we have grown into this beautiful, connected, cohesive, solid little unit of four. We have grown into the Z Family I knew we could be, the family I always wanted for myself and dreamed of for my future. And now that future is here. I’m loving every minute and running outside into the sun every chance I get — even if there are chores to do, photos to edit and OverTime to earn.

Life is short, way too short.
And I’m not done growing.

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Things you should do in case the Mayans were right…

The world could end today.

Here’s my suggestions on the best way to go out:

- Visit the blog’s Photography Page and learn about great specials I’ll be offering in 2013 to celebrate in case we all survive.

- Donate to the National Down Syndrome Society. You can’t take money with you. Plus, I swore I’d work as an advocate for Zack and this organization that has done so much for our family until the day I died… Well…

- Snuggle with your family. Tell loved ones far away how much you love and appreciate them. We should have been doing this every day, all along, anyway.

Good luck!

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Letting it be and catching up

The older I get and the more life experience I have under my figurative belt, the more I learn that my biggest fault may just be how hard it is for me to just let it go.

If I don’t get home on time from work, I have a very understanding husband at home who appreciates my hard work and time away from my family.

If I think a negative thought regarding Zack’s Down Syndrome, I’m human, not a monster.

When Addie got her first boo-boo on my watch, it’s so wonderful that her Momma gets to kiss it better.

I’m working on it. I went through a few weeks recently where I took everything more to heart than I should have; allowed little things to bother me as if they were the end of the world.

So I repeat to myself every time I feel the urge to blame myself for poverty, hunger and civil wars… Let it be, let it be, let it be…

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* * *

In the days before their wedding, our dear friends Ryan and Ruby asked me to fill in as a photographer on their big day when their hired help left them stranded. I was honored that they thought my photography skills worthy of some of the most special moments in their lives together, but I was also incredibly nervous and unsure of my abilities.

But, alas, a “let it be” or two and there I was, early for the first time in my life, testing outdoor lighting, admiring brick pillars and wood walls and the love between a really lovely group of people.

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Ruby has been more than patient with me as I wait for my final package to arrive so that I can present it to them, hopefully next week, and so I was hesitant to share too many photos, but what the heck… Let it be.

I was able to capture some of the pre-ceremony moments between Ryan and his groomsmen (including my handsome hubby) and also some of Ryan’s family. The laughs shared between friends, the doting look in his parents’ eyes, the immense pride that was at this location… it gave me a sort of adrenaline high that I can’t explain.

And then, perhaps my favorite moment of the day: Ruby really wanted a photo with Ryan before the ceremony, but didn’t want them to see one another. We had only a moment or two, as we were already running late (tee-hee!), but we perched each of the newlyweds-to-be on one side of a large brick pillar outside of the reception room. The early evening light was streaming in the glass doors behind them and there, as I clicked away and played with settings, Ryan and Ruby grabbed each other’s hands and both smiled simultaneously. It was as if they had each found their peace. It reminded me of the love and peach I’ve found with Scott every time our hands meet. And then, I felt almost as if I was intruding as Ruby started praying, in a low voice that only Ryan and myself could really hear. It was so sweet and moved me so much that I decided I had captured the shot and put my camera down. I had to hold back tears.

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It was a fun evening — a little edge, a little rock ‘n’ roll, some s’mores and so many laughs and memorable moments, most of which I think we’ll just keep to ourselves.

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* * *

There’s a new baby in town.

Our friends Reva and Bret (parents of Zack’s friend Owen) welcomed their baby girl, Ella, into the world just a few weeks ago.

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Ella’s a tiny lil round thing, especially compared to her big brother who was large and in charge from the day he was born. She looked a lot like Owen did when he was a newborn, but on my second visit with them the other day I saw a lot of her own unique looks coming out more, and some of her Mommy and Daddy, too.

Reva and Bret seem to be adjusting to two kids really well now and as much as I love seeing Reva with her little girl, there’s nothing quite like a big brother doting on his little sister. (I know this from personal experience)

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We’re already hoping Ella and Addie are friends when they get a bit older — Girl Power! Of course, that all depends on Addie keeping her paws off of other girls’ headbands.

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And more adrenaline rushes to come — Reva asked me if I would take photos of Ella and then of their family in about two weeks. Hooray! I’m so excited to capture more exciting life moments for people I adore so, so much.

* * *

September is going to turn out to be Wendy and Scott Bring the Love Back Month. Not that things were absolutely horrible, but rather we just haven’t been putting each other first. I never wanted to be that Readers Digest article, but yes indeed it is hard to keep your relationship first when you have time-sucking jobs, therapies, two kids, five animals and a mortgage payment.

We started the month off with our Date Night at Ryan and Ruby’s wedding. It was our first overnight time away from the kids, EVER. We have never, ever taken that much time away from them. And that will only be the record until next week when we visit Richmond for two days for our anniversary. And later that week, our friend Ben’s wedding.

We are both trying to do more thoughtful things for the other person — you know, those sweet little gestures you do when you’re first together. I do dishes, Scott buys me M&Ms… mmm, life and love is good.

We also watched the movie Fireproof together the other day, which was recommended to us by Ryan and Ruby themselves several years ago (life really does come full circle, I tell ya). We’re also reading a chapter from the accompanying book, The Love Dare, each day, too. It encourages us to be more proactive about being thoughtful, selfless, polite, calm, etc. You know, the old Love is Patient, Love is Kind… one day at a time.

At our wedding, we even played one of the songs from Fireproof as a peaceful, reflective moment during our ceremony.

Love is not a fight, but it’s something worth fighting for…

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* * *

And our babies, oh our sweet babies.
I know nothing is as cute as a photo of them or stories about them, so enough about all this serious stuff!

They’re doing amazing.
Addie just turned four months old yesterday. She’s rolling back and forth, stomach to back and back to stomach and holds her head up all the time. She tried cereal for the first time yesterday and the jury’s still out on it. Her hair is getting longer and crazier; it skims her eyebrows in the front and the girl’s got sideburns that can rival Elvis’. She wakes up happy and smiling, grabbing for her pants or sleep sack and reaching as high as her thin, long arms can reach.

I’m still searching for the perfect ratio and balance, but I think I’m getting pretty close.

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She loves her brother, I’m certain of it. When he comes nearby her, no matter her mood or location, she twists and turns her body to get him in her sight, a huge smile framing her face. She even puts up with the few stray trucks that find their way to her poor head and the way he practically sits on her, just eating up her personal bubble.

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And Zack checks up on her pretty frequently. He still calls her “Ad-da” and comes to her rescue anytime she starts crying or anytime someone is holding her. He seems very protective of her now and hardly pokes her in the eyes at all.

Zack’s doing so, so well. His physical therapist, Miss Kathleen, was just here and confirmed that he has officially reached her two-year-goal of rolling, crawling, sitting, standing, walking to play. He’s half-running now, really. He understands how to get to the car and will walk there while holding my hand on our way to a playdate. He climbs up the stairs while holding on to the wall and understands directions like “go to Zack’s seat” at mealtimes. He babbles quite often and we’re able to pick up on a few words here and there. He proclaims Da-Da so proudly and excitedly. He’s a little Daddy’s boy and I’m alright with that; it’s beautiful to see Scott’s love for his son. Zack is swinging bats and walking while throwing balls, making baskets and reading books. He’s feeding himself using a fork or a spoon and has some groovy dance moves (he gets those from him Momma). He climbs on everything — like the dining room table last night (Don’t worry, we got a picture!).

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No matter what happens with all of these photography opportunities (Nicole says I’ve caught the photography bug), my favorite subjects are still the blue-eyed loves I come home to every night.

So I’m letting it be, and sometimes that means not forcing myself to write a blog entry and not always publishing the ones I do write.

Letting it be is whatever works for you, whatever brings you your peace.

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Rabbit, rabbit

When I woke yesterday, the first day of an exciting month for our family, I felt myself recalling the many, many firsts of months when I was a little girl. I had read somewhere that it was good luck to have “Rabbit, Rabbit” be the first thing you say out loud on the first of the month. I would be devastated if I accidentally forgot and did something stupid like say, “Good morning, Dad” or “I’m late for school.” Heavens forbid!

I didn’t know what would happen in Aug. 2010, the last time we stood at the doorstep of a month that would make us parents. I know I didn’t say “Rabbit, rabbit.” I didn’t know our world would be lifted up and thrown about like a boomerang, this way and that way and that way again.

So, restless, nervous, tired from being restless and nervous, I rolled over yesterday morning, held Scott as tight as I could and whispered “Rabbit, rabbit.”
Just in case.

We had an ultrasound on Monday and Little Miss is looking very healthy. She was head-down (yay for learning the error of her naughty ways when she was breech the week before and Mommy threatened 18 years of grounding!) and is measuring larger and further along. This really could happen at any time. My aching body rejoices knowing that these last few tweaks and pains and sleepless nights won’t last for long and soon, very soon, I could be holding our baby girl.

I have just one more week of work before I become a full-time Momma for three months. I battled for a while as to how long I would work and how long I would take off to be with my two, count ‘em TWO kiddos. I know I’ve done well and made it far and I’m proud of the way I’ve handled myself despite the four months’ of morning sickness, the two months’ of Mexican cravings and the nine months of hormones and emotions. I’ve had support and concern and great soothing wise voices and tips and laughter, and I guess that’s what they meant at my New Hire Orientation when they said our team was more of a family than anything else.

So aside from yet another load of baby laundry (we are loved, we are loved) we’re pretty much physically and mentally and emotionally as ready for her arrival as we’ll ever be.
I will pack my hospital bag differently this time.
I will not take solid foods for granted.
I will be prepared with five different phone numbers to text or call for the five different scenarios I will need to handle with screams or tears or happy blubbers when I’m all alone in a hospital room. (I’m hoping for happy blubbers)

I’ve always hated May. It’s a dreadful month for me.
There is the annual celebration of all things Mother. And then the day that I no longer had one.

My original due date was two days before the day my mom passed away and I spent two days crying alone at night, wondering what sort of cruel joke I’d be handed next. It doesn’t look like we’ll make it to that date and whether or not that’s for better or worse, I’ll let Little Miss come on the day she was meant to debut and we’ll figure the rest out later.

I don’t know how I’ll handle a mother-daughter relationship after so many years without one of my own.
I’ve had great maternal influences, don’t get me wrong — my Aunt Alice has turned into someone I know I can trust with any revelation big or small and after the past year, I know we’ve got each other each and every time the world brings us down; I had a very good relationship with my Mother-in-Law for quite some time and I’m grateful for those memories and bonding moments; and my stepmother, through her role as a Nana, has shown me maternal qualities I never realized existed in that woman I once couldn’t understand.
I’ve got lots of great ladies in my life, though. Some of them mothers and some of them not.

My sister Melinda was the first person I ever told about Down Syndrome. It took 20 minutes to type the words in my phone after Scott left to run some errands shortly after our pediatrician delivered the news. I just had to tell her. She’s been there ever since, even if she’s thousands of miles away.

And I’ve got cousins, like Becky, who make me want to be a better Mom, a better person; who make me want to make tough decisions with strength and faith and the knowledge that it will really all be OK.

And my friends. A girl can only say she’s lucky so many times before people start to roll their eyes, but really I am so blessed. Old friends (I love you Jeans and Kacey and Allison) and my newer, local friends who are literally just down the road when I need them (I’m starting to get too many to name… I love you, I love you, I love you.)

So, I pray that their influences on my life, all of them, big and small, will be enough to help me become the best mother I can be to the little girl I never knew if I could handle having. The little girl who has already tested me so much; who I’m positive will keep me on my toes and show me love I never knew I could experience.

So we’re a-marchin’. One day at a time, one smile-inducing moment with our son at a time. Zack is standing more and walking (with assistance) all around the house. He is climbing steps like a pro and using his signs often. He loves “reading” his many books and is still too rough when petting Rocky the Cat, who puts up with it anyway. If you ask Zack for a hug, he will throw his arms around your neck and squeeze, squeeze, squeeze, sometimes adding in a pat on your back. He kisses his toys, he waves “hello” and “goodbye” and he eats more food than a toddler should ever fit in their stomach at one time. He’s good with strangers and yet has a special connection to certain loved ones in his life. He loves watching the world outside from our front door and even more so enjoys walks down the street, especially if the puppies join us.

There are so few moments left with the three of us as a family. I plan to enjoy them all to the fullest.

And though I’m the happiest I’ve been in quite some time, I still believe in silly phrases on the first of the month. But I believe more in creating happiness from sadness and learning lessons from the littlest bits of life.

I still believe that May could be a pretty amazing month.

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A letter to my littlest love

Dear Baby Z, (Version 2.0)
Hello, my darling. Momma loves you.

Your daddy and big brother and I are going to see movies and pictures of you today and I wanted to write you a letter before we “saw” you for the first time.

You see, the very good doctor is going to be looking for things that are wrong with you.
But I already know that you’re perfect.
You could have three eyeballs or 12 toes or a large heart or a small heart or a sick heart and you will still be loved with all of my heart. You could be a little boy or a little girl and I’ll love you all the same.
You could have a name like Down Syndrome attached to your world. And guess what? Momma will love you and will do everything in her power to give you the best possible life, bigger than anything you could ever dream.

I need to start by apologizing to you, dear baby. You see, I’ve been unfair a few times. Aside from the Cokes I drink on long days and all the Mexican food I put you through a couple of months ago, I’ve also spent way too much time thinking about all those things above. I’ve spent more time wondering if you would be “okay”, knowing it didn’t really even matter, rather than talking to you, rubbing your little home and meeting you in a quiet, pensive place. I’ve sung Christmas songs since mid-November and have blasted Eminem too many times for your innocent ears to hear.

But do you remember the first time I told you I loved you? The day we found out you were going to be in our world, that September day that seems so long ago? I meant it then, but it’s grown in four months and, some days, I just want to scream it from the roof, even if I’m afraid of heights.

You have so much love waiting for you outside of that squishy place you’ve been calling home.
We have a house that we have made our own, with nooks and crannies for you to play and hide in and plans for a really lovely nursery we hope you’ll enjoy. You have a backyard and a great little quiet town with neighbors who will always wave “hello” when we go for a walk. You have three kittens who will tolerate petting and tail-pulling (although you’ll eventually get yelled at for that one) and two puppies that will keep you giggling when they go running past you.

You have a Daddy who is one of the funniest people in this world. He makes your Momma laugh all the time. He’s a little too manly for kisses and hugs sometimes, but never too macho to sneak in a back rub, a pat on the head and a whispered “I love you” when he thinks no one is listening. He loves sports and his little yappy doggy and most especially you, your brother and your Momma. He listens to a lot of country music and does a fierce imitation of Shania Twain on karaoke, but we love him just the same. I don’t believe there’s a better Daddy in the world.

And you have the world’s best Big Brother. Zack is going to be about 22 months older than you. I hope you two will be best friends forever. I hope you will help each other and love each other; call each other when you’re older and living apart and watching the stars together in the backyard when you’re kids. Zack may have a tough road ahead of him and I hope that you are patient and understanding and supportive. These things already have and always will get our family through the toughest times. There may come a time when you’ll have to show Zack how to do things, even though you’re younger than him — I hope you don’t mind, and I hope that you’re a great teacher! And there is a chance that you and Zack may have a lot in common, and if that’s the case, your Momma and Daddy will be ready. Your brother already has a very sweet, snuggly personality and has the biggest smile I’ve ever seen.

I wonder what you’ll be like.
But I don’t plan any big plans for you. It’s not fair. To anyone.

I have dreams. And sometimes, I have nightmares where I worry about you and your brother. I cry a lot for you and I haven’t even met you. But I cry out of love. And lately, I’ve been laughing a lot more than I’ve been crying.

You have a lot of people waiting to meet you… friends and cousins and aunts and uncles and grandparents all over the country just thinking happy thoughts for you and eagerly anticipating your arrival this spring. There are a few people who you’ll never meet; people I will tell you about all the time; people who loved you before they ever knew you; people who will always be a part of your life.

But for now, my love, relax and enjoy the ride. Sometimes I walk too far and drive too fast, but I’ll try to keep things comfy for you.

I can’t wait until I meet you.

Oh, these cuddles

Z-Man came down with a bit of a stomach bug; his first real one, too.

When I came home from work last night, Scott looked exhausted and said he and Zack had both lost their cookies a bit. Sorry, honey, I feel bad for you, really I do, but the poor Little Man!

Needless to say, I ventured into a screaming boy’s room many, many hours ago, to find a truly disgusting sight, one blonde-haired boy sitting in the middle of it all looking oh-so-happy to see Momma in this crazy war zone.

I scooped him up, cleaned him from head to toe all the while humming to him. Once he was all tidied up, I set him down, cleaned the space formerly known as his room, (I’m pretty sure we have to burn it in order to get the smell out of the house), and finally, oh finally, I could do what Mommies were made to do in situations like this.

I  wrapped him in a soft, fleece candy cane blanket, held him in my arms in the recliner in the living room and just rocked him. At 4 a.m., it was a caress on my hand with his soft little fingers. Within minutes, the petting stopped, the breathing grew deeper and two little fingers stayed wrapped around one of my own for several long beautiful moments.

We stayed that way for hours, until Daddy and the puppies woke up to start their day. All the while, I just sat there thinking about this handsome child in my arms. The hair that is so blonde, so silky, so shiny. The little ears that hear me whisper “I love you,” imagining the day my own ears will hear those same sweet words from him. I thought of holding him like this all those many months ago when he was just an infant with a rough cold. I thought of how he would fall heavy in my arms during feedings those first few weeks and of our incredible journey in that time.

And as his chest rose up and down over my own, I thought of his little brother or sister inside of me, thought of the Big Brother Z-Man would be, the impact this younger sibling would have on his life and all of the colds and stomachaches and earaches and injuries and sad times to come. And how each of those offers a chance to grow stronger and to fall into the arms of someone they love… hopefully their Momma though.

It’s what I thought being a Mom was all about; it’s why we put our bodies through what we do; it’s why Scott and I aren’t suffocated by thoughts of Down Syndrome or diagnoses or special tests. It’s because we have cuddles and snuggles and cries and laughs.

We’ve been referred to a specialist doctor for my pregnancy and go there Jan. 3. I feel like we’re being shaken loose because of Zack’s diagnosis and Baby Z 2.0′s chances of a diagnosis. I feel betrayed. I wonder if Baby 2 will always be the younger sibling of a man with Down Syndrome; I wonder if my heart can handle judgement and pre-conceived notions.

To me, I’m carrying another opportunity for snuggles and cuddles and early morning Momma days and mid-evening clean-ups. Because that’s what it’s all about. But I know Scott’s right when he reminds me that the doctors have to think about heart defects and “what ifs” even if he and I choose not to. So we’ll start the new year with a trip to a doctor I never wanted to see. But it comes with a nifty 4-D ultrasound and answers to very important questions…

… like pink or blue?

… Alfonso or Esmerelda? (My father-in-law’s picks of the week)

… Love with all of my heart or love until the end of time, no matter what? BOTH.

I wrote a Thanksgiving post that had pictures and funny stories and warm, mushy feelings about family and friends.

And then I deleted it somehow and couldn’t get it back.

So, just know that it was a great week last week and that I’m thankful and happy and oh-so-content.

And now I must go spy on a blue-eyed boy who’s got me wrapped around his finger. Even if the finger smells like puke.

It’s a Mommy Thing.

When your future walks by

I have two modes: strong and weak. There is no in between and both are contrived entirely out of my own beliefs in how I should act or think or how I’m expected to handle a situation that comes my way. So when I let down my guard or show my emotions, I am weak, plain and simple, in my mind. I know that’s not the case and I know it’s only human to not be 100 percent strong 100 percent of the time. But pre-Mommy Mode and post-Mommy Mode is like night and day.

So the other day at work I quite literally saw my future walk on by, right in front of my unsuspecting self. I was standing outside the resort when for some reason, I felt inclined to turn around in the other direction. At that exact moment, I saw 10 seconds of a mother’s day-to-day life. The mother of a son with Down Syndrome. Her son was tall, thin, smiling a large smile, but clearly impacted greatly in several ways by Down Syndrome. He was hesitant about the stairs in front of him, confused about where he was heading and staring excitedly and innocently at the world around him, noticing the flowers in neat rows, the cars being parked nearby, the people standing on the porch. And his mother, graying hair, tall herself, reeked of patience and a heart that is still not whole. She guided him, one hand on his arm, talking to him even though he was much more focused on the task at hand. She looked at him, seeing 20-plus years of moments like this and 20 or so more to come, the two of them never to be equals, she always being his leader.

My throat hurt, my eyes filled with tears.

And as quickly as I started feeling bad for myself, I felt horribly unfair to Zack.

We don’t know what Zack’s life or abilities will be like in 20 years or 20 months. We don’t know what we’ll be like as parents at that time or what other obstacles we may have between now and then.

In the next month, we face two consultations with doctors. The first one, on Tuesday, is a yearly exam with Zack’s pediatric cardiologist. At birth, Z-Man had two holes in his heart that were (hopefully) going to close by his first birthday. At his last pediatrician appointment, though, the doctor thought he heard a murmur. Children with Down Syndrome are often impacted by serious heart defects.

Then in mid-October, we go to Children’s Hospital in Pittsburgh for a consultation with the pediatric urologist. Zack will likely be facing a surgery in the next year — killing two birds with one stone as we try to help his non-descended testicles (keeping them up can increase his risk of sterility and testicular cancer) and a hernia near his belly button.

I’m a nervous wreck.

When Zack was five days old, we left the hospital for the first time, heavy with a new diagnosis and exhausted from an extremely long hospital stay and traveled to the cardiologist’s office, where our nine-pound baby was attached to wires and coated with ultrasound goo as a strange new doctor with a heavy accent looked around his tiny heart. I cried so hard trying to breastfeed him in a private room afterwards, wiping the blue goo all over the doctor’s chair that it was the biggest failure of a feeding we had. I thought I had actually been feeling my heart break in two and I knew that this would be no ordinary parenthood.

I knew that life would never be the same.

But it’s still shocking when it stares you in the face. When a lanky boy with a beautiful smile has no idea how much his mother loves him, how much she would do for him. How much she has sacrificed, studied, learned, prayed.

Zack is getting a one-year evaluation from Early Intervention and we have already been warned by our therapists that we may not like the results and that we, a collection of his caregivers, may have failed him, becoming too comfortable with how we were doing things to encourage more and more independence, strength… success.

So, we endure crying while we force him to feed himself puffs and melts and pieces of cereal, we urge him to hold his sippy cup despite the fight he gives us and we fight right back, pulling him up to stand and letting him roam and crawl and explore. Because I’ll be damned if I ever let myself fail him. If I’ll ever let anyone fail him, give up on him or stop him from having every.single.opportunity humanly possible. I will never look back in regret; I will never wonder if we all did enough for him.

 

 

 

 

 

 

 

 

 

I will fight.

Because he’s a fighter.

Because he made me a mother, he made me a better person.

And when I forget that, I have an amazing support system. E-mails and texts that tell me they “get it,” upbeat quotes that always come at just the right time, compassionate words from c0-workers. And friends like Owen’s Mommy who spent the better part of an awesome playdate listening to me sharing my worries and babbling about exercises and yadda yadda, this and that… all the while, she’s instictively helping Zack to stand, rolling a ball back and forth to him and making him grab things on his own, all the while making me feel like the luckiest friend in the world.

 

 

 

 

I love how Zack and Owen have this amazing bond together. How they sometimes babble in their secret language to each other, sharing toys now, touching arms and pants and feet with smiles. I hope they are always friends and I’m grateful at the comfort knowing Owen will have such a wonderful Mommy who will teach him in just the right way all about his BFF.

 

 

 

It’s funny how life works out, what happens when you’re not looking or thinking or planning. It’s funny how even at the worst of times, there is still that deep-down feeling that you still have it pretty good and things will all work out just fine.

 

 

 

 

 

 

 

 

 

 

 

 

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.


Turning off the silly switch

Special needs is all up in my face this week.

A co-worker asked me about the chances of Scott and I having another baby with special needs if we were to get pregnant again and I very matter-of-factly told her that the chances were higher but that it didn’t matter.

“This is the only type of parenthood we know,” I answered with a shrug. Because really it doesn’t matter anymore. We’re over the shock and confusion, the hurt and the anger. All we know is this beautiful way of life we’ve been given and we’ve accepted.

*   *   *

But hard as we try not to focus on Down Syndrome or worries about the impact some so-called “special” needs has on us, other times it just smacks us over and over again.

 

Zack and I were invited to a Mommy-and-Baby playdate with some friends this afternoon, but had to turn down our invitation. You see, The Dude has a therapy this afternoon and so I need to manipulate his schedule just a bit so that he gets in a good nap before Miss Sheri visits to work with him on all of his skills. As much as I’d love to see Zack and all of his little friends splashing in a baby pool on my day off, our entire Zee Family Team needs to make sacrifices now to provide better possibilities in the future for the little big guy.

 

 

And there will be more playdates. With friends who don’t segregate, don’t judge, don’t worry, don’t fear.

 

 

 

*   *    *

 

 

 

 

 

My most recent purchase wasn’t a new outfit for work or a cute pair of shoes. It wasn’t an item for our house to-do projects or a gift for a friend. It was a Baby Sign Language book and flashcards. Scott and I spent a good 20 minutes performing a funny skit for our a Mom Friend the other day, and while we were all cracking up, in the back of my mind, it was yet another reminder that putting my hand to my mouth to signal “eat” at mealtime or stroking pretend whiskers on my cheek when a cat walks by is yet another small way I can help my son.

*   *   *

 

 

In my most pitiful moments, I watch people’s faces at work as I show them photos of Zack. Have I told them about DS? Can they see it for themselves? Do they feel bad for me?

Do they feel bad for Zack? Oh please no, no, no.

*   *    *

 

 

Sometimes “special needs” just surrounds us. We can’t escape and we aren’t looking for it.

Yesterday was Scott’s first Father’s Day and my heart felt so heavy all day, even hours later while I sat at my desk at work by myself working on a schedule. This isn’t fair for Scott, I tell myself.

 

And then I get mad, furious at myself. That last thought wasn’t fair for Zack.

 

*   *   *

 

 

 

 

 

 

Scott was watching ESPN (it was Father’s Day after all, and all’s fair in love and marriage) when a short segment came on on some golfer who has a son with severe Autism. I was feeding Zack breakfast, we were giggling. Scott was talking about some championship Ernie Els won and his style of play.

And then, silence.

The video could have been our story.

“But the pictures can’t tell the story”

‘I just hope he’s happy.’

For five minutes, I tried to steady my hand to spoon cereal into Zack’s mouth, as months’ worth of tears flowed down my cheeks.

The Els accepted the diagnosis that would change their family forever.

‘He enhances our lives and he keeps our feet on the ground.’

The portrait is different now.  A portrait that may not be easy, but is pure and precious.

I wiped my tears and received the most glorious smile from my little man, as if right on cue. I kissed my husband, nodded in agreement with a statement he didn’t have to make and we moved on, surviving yet another one of the many, many tests and reminders along the way.

*   *    *

My mother-in-law left her Good Housekeeping magazine here last week after one of her days babysitting. I picked it up while Mickey Mouse sang his Hot Dog song and talked about turning off the silly switch, expecting to browse for a new recipe or stall from cleaning the house.

I found this article instead. A story about a family with two severely disabled adult sons. And the life they never thought they’d be living.

Nobody talks about what happens when the adorable kids grow up, as Matt and Sean did, to be clumsy, awkward adults.

“We were meant to have Matt and Sean,” she says, and I believe she means it.

 

Who asks the most terrifying question a parent can ask, the one all of the praying and baking and scrubbing and bleaching can’t help her outrun: What will happen to my boys?

If watching my sister-in-law deal so absolutely extraordinarily with her ordeal has taught me anything, it is the power of now, the beauty of seeing things as they are, not as you wish them to be. She adamantly refuses to live a life of “if only,” wrapping her arms around what is.
I was about to turn the pages back, re-reading the story as if I hadn’t already memorized it by heart, when a noise captured my attention and my heart. My son, whose future is unknown, whose struggles may only just be beginning, was laughing, sharing a silly smile with me from his twisted blanket on the floor.
I put the magazine down, leapt down to the floor and smothered him with kisses and tickles, stopping once to sign the word for “Mommy” and basking in the beautiful blue eyes.
<—-  (PS — Check out who’s up on their knees, rocking back and forth like a big, strong boy?!)
Those eyes that were one of the first signs of DS for doctors the day he was born. Those eyes that are my grasping back to the beautiful, wonderful world we live in, with blue skies and clouds of white.
A world that has a silly switch that can be turned on every now and then — that NEEDS to be turned on every now and then. But the beauty of a switch is that it can be turned off.
Sometimes, I need to be in that room. The switch turned on, the tears turned on, the sadness and all of it. But I don’t allow myself to stay too long. I close the door, turn off the switch and get back to what’s much, much more important.
The secret to surviving is turning off the silly switch.
And laughing. Lots of laughing.