Posts tagged ‘Down Syndrome’

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January 3, 2012

A letter to my littlest love

by zeefamilymom

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.

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December 2, 2011

Oh, these cuddles

by zeefamilymom

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.

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September 25, 2011

When your future walks by

by zeefamilymom

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.

 

 

 

 

 

 

 

 

 

 

 

 

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July 29, 2011

Crawling and coping

by zeefamilymom

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! :-)

 

 

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July 20, 2011

Zack’s birthday wish

by zeefamilymom

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 — 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.


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June 20, 2011

Turning off the silly switch

by zeefamilymom

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.

 

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April 6, 2011

Everybody poops and there was some sunshine

by zeefamilymom

This post is actually about five posts in one. Bits and pieces of thoughts from this day and that day and retracing notes on scratch paper from work and home.

there’s a fire starting in my heart, reaching a fever pitch and it’s bringing me out the dark

Truth be told, I was going to write in honor of World Down Syndrome Awareness Day a couple of weeks ago. About how one diagnosis has changed my family’s world. About the darkness Scott and I found ourselves in one afternoon in the hospital nearly eight months ago.

Then, funny story.

I was planning the post in my mind when Zachary’s diaper exploded right after a meal when I was home alone with him. The shock of such a poopy sight all over his highchair made for one of those deer-in-headlight moments on my face, I’m sure. Within moments of sharing the yucky story on facebook (with none of the photos I took, be still, although this one is from the immediate and clean aftermath…), I had several of my Mommy friends sharing stories of poopy highchair experiences of their own, and the ones in the carseat and the crib.

You see, my baby poops just like any other baby. Even with the Big Bad Down Syndrome label.

throw your soul through every open door (Whoa) count your blessings to find what you look for (Whoa-uh) turn my sorrow into treasured gold


You see, he has messy diapers like any other (nearly) eight-month-old. He eats the same baby food. He rubs his eyes like most babies do when he’s sleepy. Just like other kids, he smiles a lot. And he cries his fair share through cranky moments, too.

And as his parents, we’ve shared a lot of experiences that other parents have, DS label and all. We fought our way, numbly and in a daze, through sleep deprivation. We learned the hard way not to leave a baby boy’s penis exposed without covering. I have playdates with friends and their babies and it’s not awkward or uncomfortable or even sad anymore. We scoop up each other’s babies, and I can’t speak for them, but I feel the same glorious love and motherly awesomeness when I see and hold their babies as I do with my own.

We probably think a lot more than other parents because of DS. We think about exercises and goals and physical therapy. Those are things most of our friends don’t consider.

I know I regret. Regret wasting my time making plans I had no business planning. And dreaming daydreams of things that aren’t that important.

And we worry. We worry about missing goals and lazy days of exercise. We sometimes, when our guard is down, worry about the future. That big, unpredictable scary series of tomorrows. Tomorrows of shorter life spans and unknown skills and achievements and delays. Tomorrows of teasing and confusion and the need to spend an entire lifetime “proving everybody wrong.” How sweet it would have been to have felt no need, no pressure… no DS.

But really, the majority of our lives are not spent thinking about our lives with Down Syndrome, but rather thinking of a life that has beautiful blue eyes, blonde wispy locks of hair and reaching, grabbing, exploring fingertips. A life that has taught us to live.

A co-worker used the “r” word in front of me last week. And it was the first time since Zack was born and I started following the Spread the Word to End the Word campaign that I haven’t felt the need to throw a fit and stand on my soapbox with a megahorn.

We have hibernated our long, cruel winter.

I guess the winter makes you laugh a little slower, makes you talk a little lower about the things you could not show her

And it’s been a long December and there’s reason to believe
Maybe this year will be better than the last
I can’t remember all the times I tried to tell myself
To hold on to these moments as they pass

And Spring is arriving, in teasing, agonizing glimpses here and there, but it is arriving nonetheless. Better late than never.

Between the budding flowers and green fields along my walks with Z-Man and the new job and everything that it brings with it, I am truly opening my eyes to everything around me.

The love given so beautifully and easily to me from my two guys. One who has given me the ultimate battle of my life so far and the greatest pride, welling up in a happy lump in my throat when I think of his purity, innocence, gorgeous giggles. Another who has fought the good fight with me every step of the way and who is the only person capable of making me feel so good at all of my jobs — mother, wife, manager, daughter, friend, woman, soul.
It almost feels like Scott and I are in our early days of dating again. We nuzzle together and send texts and leave little love notes. It’s pretty romantically gross, really.
There is more laughter in our house lately, and more love.
Love is a shelter in a raging storm
Love is peace in the middle of a war
And if we try to leave, may God send angels to guard the door
No, love is not a fight but it’s something worth fighting for

I can smell candles burning and the steaming cup of coffee in my hands.
I hear the background hum of a favorite ballad and a high-pitched squeal of delight.
I feel the warmth of muscular arms holding me tight, the warm breath from a good-morning kiss.
But what I see. Oh, such beautiful things.
Few things will ever compare to that big goofy, gumless grin that greets me after a long work day. Zack’s face just seems to explode with delight every single day. The 30 or so minutes that follow, although at his most tired time of the day, are so beautiful. My hair twisting in his fingers, his blue eyes searching my own.
So forgive my infrequent posts. I can’t offer you a glimpse into our lives every day any more, but I hope never to stop this blog.
I just need more time to see things in a quiet place far removed from everyone and everything. I need time to watch the cardinal that was dancing on my front porch this morning while I danced with my son to a bad 90′s song.
I need more time to laugh with my son and hug my husband so very tightly. Then, I can come here and share it all — the good, the bad and the ugly.
For now, I am so very happy.
And I think my two guys are pretty content as well.
Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here

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February 18, 2011

Date Night and healing

by zeefamilymom

It’s been at least six months since the last one. And my belly was so large we could barely fit in a booth.

I’m talking about our last Date Night.

We got relatively dolled up after work yesterday, bid adieu to our son and his grandma and hopped in the car for our first adults-only evening away in more than half a year. I have to be honest, the nerves were high. I can’t remember having such a hard time getting dressed or having such a feeling of butterflies since our first dates together four and a half years ago.

(these two photos courtesy of Grandma Zook)

I love  how Zack is looking at us in this photo. :-)

 

 

 

 

There’s a lot of reasons why we waited so long to have our first excursion by ourselves, and most of them are my fault. I wouldn’t recommend waiting that long to any of my new parent friends.

Our romantic (cough, cough) evening began by looking at possible new trucks for Scott. For nearly TWO HOURS.

But it made my handsome hubby happy, so we just went with it, although I eventually started answering his questions about how this vehicle felt or what I thought of this spacious back seat with “I’m really hungry.”

Does this truck smell funny to you? “I don’t know, but I’m really excited for the breadsticks.”

I’m not sure I like the tint on these windows. “I’m not sure if I’m in the mood for soup or salad.”

Finally, we moved on from that oh-so-exciting (and did I mention romantic?) adventure and found our way into a booth at the local Olive Garden, perhaps my favorite restaurant of all time.

The wine was poured, the appetizer and meals ordered, and the conversation began. Innocently enough and about some pretty mundane items. And then it progressed, as I realized the serious items we just never really talked about these past few months. Not for an extended period of time at least. Like, oh, what an abslute hellish few months it was as we came to terms with Zack’s diagnosis of Down Syndrome. And how our first few weeks with our son was not at all like we had planned and prepared for over our pregnancy. And how absolute rock bottom we both hit, all the while trying to be strong for the other person and completely aware and unaware all at once of how they were handling our lucky Life Lottery.

The conversation continued in the parking lot while holding hands. And all through our 40-minute drive home, my head on his shoulder as he drove us back to reality.

I have several people who tell me constantly how amazed they are at how well we handled our unexpected surprise last August. I think their comments are simply a testament as to how well we faked it. Don’t get me wrong, I am still amazed myself sometimes at how we made it through to this healthy mindset we’re in now. But it was a long, scary road behind the scenes.

Scott and I agreed last night that unless you live it, you just don’t understand. The grief. The shock. The numbness. The ridiculous thoughts, the hopeless feeling, the wondering and the “what if” moments. And then that slow, back-burner healing that follows.

It was five months before my husband and I realized we were healing. And six months before we could really talk about it.

We’ve shared everything together and we’ve been through some tough times in our relationship, but for some reason, we had to go this alone. We had to fake it and make it, we had to almost break it. (Rhyming is funny, but in this case also true). We had to take it.

It was two days after my son’s birth that we were told he might have Down Syndrome. And it was one week after that we got the results of a test we wish we didn’t have to take.

And it was months before I realized I would never get the manual on How to Live the Life You Never Dreamed You’d Live. I searched with all of my might for the instruction booklet that tells you how to live your life when you can’t believe it’s turned out the way it has. I imagine it’s the same for people with a cancer diagnosis. Or who  lose a loved one.

But, Scott and I said last night, ours was a Question-Mark Diagnosis.

We just don’t know so much.

Will Zack be able to walk? Will he say “I love you” to his parents? Will he be the all-star left-handed pitcher we imagined for nine months? Will he prove the doctors wrong? Will he prove his parents’ hard work is worth it?

We just don’t know.

We had a huge support group. People who did everything they could; people who did everything right. People who said “Hey, bud, we’re here for you guys.”

But they couldn’t step into our shoes. They couldn’t take us out of that deep, dark, ugly place and make it all go away. And so we ran away from some of them. We hid out in our grief and immersed ourselves in the beautiful blue eyes that stared up at us each day with love and innocence. Such love and innocence that made me feel such guilt for those ugly thoughts and feelings in my Mad Momma Mind.

But here we are. We made it, friends. We are on the OTHER SIDE. It’s a beautiful place. I’m glad we’re here.

Scott always has a sports analogy for whatever situation we’re in. Last night, he told me this story about some coach (clearly I pay attention to the details… maybe West Virginia baseball?) who would yell at his players that if two guys were trying to catch the same ball, one should yell “Same team!” and one of them should step away. They’re going after the same objective, Scott tells me, and you need to work together by sometimes letting one person handle it and be there for back-up.

There’s a lot of situations lately where I’ve been fighting for the same ball with someone on my team.

And so my new mantra is Same Team. Same team. Same team.

I bet you weren’t expecting all of this from a tale of our first Date Night post-baby, huh? Please don’t feel sad or troubled by how it turned out. Scott and I are in a fantastic place now. I loved snuggling up close to him last night and felt like a million bucks this morning when he wished me a great day.

Same team, love, same team.

And now, I leave you with some photos of a great week with our beautiful son. The boy who has made us better people. The boy who will change the lives of so many in ways we don’t know yet.

Our son is our blessing. He is our life. He is the most beautiful thing to come into our world.

And I can honestly say we wouldn’t change a thing.

 

 

May you have a great weekend!

Same team.

 

 

 

 

 

 

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January 21, 2011

Progress

by zeefamilymom

I think measuring progress is a crazy thing.

In school, you take midterms and get progress reports. At work, you get reviewed every so often.

I can’t tell you how a “regular” parent measures their baby’s progress, because I’ve never known any type of parenthood other than this journey we’ve been on since August. Our little man’s progress is measured in homework and checklists from his therapists’ weekly visits and from the watching of a clock’s second hand, and then, if progress is good, the minute hand when a new task or exercise is being tested, or forced, upon our wiggle worm.

Sometimes progress is hard to find.

The ‘maintaining skill’ code on the therapists’ sheets instead of “I” for ‘improvement.’The screaming of a frustrated baby who wants to play. The silent tears of a mother who wants to play. The milestones on Facebook, photo albums and shared stories — milestones we haven’t met.

And I know…

…”Every baby develops differently…”

…”You can’t worry about that…”

…”You just wait and see what he does…”

But I can’t wait. We can’t wait. So we trudge forward, sometimes with excited zest. Sometimes with tired discouragement.

 

Then there are those times when progress, real progress, sneaks up and slaps us across the face in one excited accomplishment.

 

Tummy Time used to be absolute Hell on earth. Screaming. Tossing our head onto the floor and bawling from our little man. Or lying motionless and killing my heart even more.

 

Now it’s just about impossible to keep Zack on his back. Dude goes on floor. Five seconds later, Dude on belly! Smiling!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And now he’s started flipping from his belly over to his back, easy-peasy.

Sleeping? Now on my back, thank you very much, Zack says to the video monitor every night. When I open his nursery door, a smiling face looks up at me every morning.

 

 

This afternoon while I was working, my little co-worker fell asleep on his stomach — and stayed there, peacefully, for nearly two hours.

 

 

 

On Thursday, we had a three-month home visit by our Early Intervention coordinator. She watched Z-Man’s interaction with his physical therapist, who was so thrilled with the baby’s progress that she just kept exclaiming over and over again: “I can’t believe he’s doing this… he didn’t let me do this with him before… he’s never tolerated this before…”

I tried to keep a cool exterior, but inside I was beaming from head to toe with pure joy and pride.

After three months with EI (one of the best decisions I could have made in those first few numb weeks), Zack’s already accomplished two of his five sub-goals underneath the main goal of being strong enough to roll, crawl, sit, stand, walk and play. (Sounds SO much simpler than it really is.)

So we added a couple of new sub-goals and he’s cruising for success in two other categories any week now.

But it’s a long way to go. Even with all the excitement, it was only a “slight improvement” type of comment day for our physical therapist’s sheet.

This is not a finish line. I’m not sure there ever will be a finish line.

But there’s a right-now line. And we’ve left it in our dust, excitedly scurrying toward our told-you-so and knew-he-could lines.

 

 

We sit (with support)!

 

We have neck control. We track noises and sights with our eyes, back and forth. We roll and roll. We *almost* have that crawling motion down.

 

 

Oh but there is so much more. Just as we accomplish this week’s homework, next week’s session will come, bearing some sort of code and leaving us with yet more homework to humble us down. But Down is the new up, you know.

We parents, we progress real nicely, too. I almost wish someone had a code to assign to us, because some weeks (like this one), I can’t help but feel like I’m kicking butt, too.

And Scott is becoming a better father by the minute. To see him kiss his son and call him “my boy”… well, there honestly are no words for that one. That’s a special feeling I prefer to keep in my heart as I lean against a doorway watching my two guys interact with funny noises and smiles.

 

 

 

We rejoice. And we celebrate progress with our awesome, awesome SuperBaby.

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January 8, 2011

Giving Zack and Nella a chance…

by zeefamilymom

… to pursue their dreams.

… to push past boundaries.

… to prove people wrong.

… to do the things that makes others get those sad eyes because they think my son and a beautiful stranger friend named Nella can’t do them.

 

Another Mommy blogger with incredible talent as a writer, photographer and most especially, momma, included Zack in her recent post in honor of her daughter’s upcoming first birthday.

Please check this out.

I know money is tough. I know this isn’t JUST for Zachary. But it is, really. A donation to the National Down Syndrome Society helps all of the Zacharys, all of the Nellas. It helps their parents and their families, too.

My favorite Christmas present this year came from my cousin’s girlfriend, whom I haven’t even met yet. She donated to NDSS in Zachary’s honor. We have been so moved by that that there are still no words to express our sincere gratitude or amazement.

Kelle gives me  hope every week with her raw, honest voice and a peek into her world. A world that, like ours, included a diagnosis of Down Syndrome this year. A world that has been made better for it.

Thank you for those who  have supported us on this journey so far.

Thank you to those who ask questions and find answers.

Thank you to Nella.

And to Zachary. You make me a better momma, a better person.

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