The FYI and that tree

Kindergarten registration, perhaps particularly for a child with a disability or handicap, is not for the weak at heart. I hesitated writing this post because I know this has been a redundant topic and I fear that it comes across as only negativity regarding Zack and our journey. Not my intention at all.

It was supposed to be 15 minutes of a quick screening, I was told. We were excited to finally have one of us see the inside of the “home school” for the kids (where Zack will attend is still up in the air). After our issue with the registrar’s office last month, I found my anxiety level in the last few days rising steadily. Still, I kept my chin up and my mind open and drove the mile and a half to the large brick building.

We took a photo out front and marched up the front steps, all three of us counting together. We were greeted in a lobby filled with Cat in the Hat cut-outs and smiling children.

And then we were given a packet, instructions for a six-part circuit in the gymnasium and, right on cue, Zack ran down the hallway and wouldn’t come back to me, smack in the middle of a handshake with the principal. The first stop after scooping him up and talking about danger and listening, was simple — letters and colors and shapes — the table where he’d impress and prove wrong the challengers.

He didn’t speak a single word. Not his favorite color or the first letter in his name. A Kindergarten teacher at the school shrugged it off and told me it was no big deal and sent us to the next station. He wouldn’t even sit down at the table where all he had to do was match letters and name the item in a picture. At the nurse’s station, a middle-aged woman asked questions about immunizations and I don’t know if she didn’t make eye contact because I was already holding back tears or if the tears came because I felt her give up.

At the top of Zack’s checklist, an hour later and now with “yes”s and “no”s alike, was a tiny yellow Post-It. “FYI” in large block letters. And the name of the LifeSkills class in another school miles away. At least they were kind enough to add a question mark, but by now, visions of a dismal, windowless room in the basement were already popping into my mind. The other school, the guidance counselor said as we left, ink still drying on our packet, “could be lovely, too.”

On the way out, Zack counted to 12 on his own and pointed to my Jeep and said “Momma’s white car.” I cried in that parking lot while the kids ate their gifted lollipops and attached stickers to their shirts.

I hated Down Syndrome more than ever before in that parking space under a flowering tree. I never even thought Kindergarden would be a blip on our radar this year. And now, the same strangers who assured us that ZMan could thrive in an elementary school, maybe even a regular classroom, go ahead and go through the process, what’s the worst that could happen? — Those strangers already counted him out or counted on this. I mean, FYI.

It’s not the recommendation that he does X or Y; it’s the getting there wondering if you’ve done enough.

The worst that could happen? This. This parking space and the phone call to my husband. The helplessness and the hopelessness. The reminder that everything is a battle and some battles can’t be absorbed by a lollipop and his Momma.

My friend is wise and calming and she told me today to “try not to borrow trouble.”

So I lay my worries on the ground and cover them up and plant something beautiful in their place. We will cherish and nurture the good that comes out of this mound of dirt and we will see where it takes us in these next few months. And we will grow. Perhaps into a flowering tree to harbor fears and shelter worries.


Snippets — On “new”

There’s a lot of “new” among us nowadays.
We spent a lot of time in our “old” planning for this New but really, we had no idea and yes, yes it was worth every minute of excruciating, stressful waiting.

Here’s a peek.

On Our Home
I love this place.
I could end the blurb right there, but let me tell you — I love it so much and for a thousand reasons.
This place is our home already, not just a house. I have such a large kitchen that I am constantly feeling like I get a workout walking from the stove to the sink and back to the stove. It’s just a terrible problem to have, geesh. But seriously, it’s exciting to cook dinners here and bake desserts. It’s the location of our back door, so the hubby walks through it every night just as the kids are getting on my last tiny, itty-bitty nerve and only milliseconds after I have somehow managed to put the house back together again after we’ve spent all day tearing it apart together.

I have my own (giant) laundry room with two brand-new appliances that sing songs when they’re done with a cycle and calculate via a little Robot Dance how dirty those clothes really are — it’s the little things, I tell you.

When I was in the house those first few days cleaning and prepping for boxes and furniture, I CONSTANTLY got lost upstairs. No, seriously. I would walk out of Addie’s room and turn left when I should turn right. And at least twice I nearly toppled down the stairs after a wrong turn.

So what that both bathrooms are set up in such a way that you have to sit sideways on the toilet when you pee so your knees don’t hit radiators — we have two full bathrooms!

I have an office to work out of, even if it’s become the last room to unpack. I may or may not be typing this with my feet propped up on a box of Mary Kay products.

Since Zack has begun school, Addie and I have started a routine of waiting for his bus on our enclosed front porch. I sip my coffee or guzzle some water, she reads her Elmo book in her Dora chair and a light breeze comes through the windows as I gaze about our street, taking in the neighbors and cars and houses and all that.

I even like our tiny yard and am grateful for the tiny amount of time it takes to mow now — and am so, so grateful there are no hills or steep slopes. I am planning next year’s herb garden and am on the hunt for some Autumn mums for our front.

There are New House cards on the counter, a new welcome mat with our last name leading out to the front porch and new coffee K-cups in the cupboard. Thanks, y’all.

Pat the Neighbor

On the night of our official move in to the house, we thought our cat Rocky got out of the house somehow. I was so upset and was trying so hard to not let it put a damper on such a special day. Scott and dog Izzie and I finally took off on a dusk walk around the neighborhood. About three houses up the one street, and a pleasant middle-aged, hard-working-and-you-can-tell-by-looking-at-him man named Pat introduced himself to us, helped look for the cat (which turned up inside the house, hmrph!) and spent several minutes talking to Scott about the neighborhood and neighbors and his time (35-plus years) here.
A night or two later while returning from the nearby park with the kids and there was Pat, waving to us and saying hello to us by name.
I was struggling with an old-school push mower my Dad gave us the other afternoon and Pat came out in his Steelers jersey, shook his head and wheeled his personal mower down to me.
“This will be easier,” he said. “Game’s on; I gotta go.”

For being only a few miles down the highway from Wilkes-Barre, a relatively large city in Northeastern PA, we feel like we are in quiet suburbia. Dogs are walked and kids go to the park and bicycles whizz past the house and the mailman walks down the street and makes sure your front door is latched every time she drops off a package. It’s relatively quiet and our location is incredibly convenient. We’ve discovered a handful of parks and attractions and events and are so excited to continue our exploration of the area.

Zack’s (second) First Day and Addie’s Still Crazy
Z-Man started at his new school this week and of course, did not disappoint with his adaptability and strength. He gets picked up in front of the house in a van with anywhere from four to eight other kids already on board and gets whisked away to his school, only a five-minute drive from our house. His school is a reverse inclusion classroom-type program (half special needs children and half “typical” children) and is the perfect blend of the two programs he was in last year. There are therapists on site, a new sensory program, focus on his IEP and a foundation based off of Montessori teachings.
On his second day, he grabbed his backpack on the front porch and said, “Momma, school bus!” and we marched to the white vehicle. I opened the door and he hugged my legs for just a few seconds, looked up at me with a smile and hopped inside with his friends. When he came home, I asked how school was and he kept saying the words “happy” and “friends.”

His time at school gives me and Addie some “Girl Time” and I am enjoying that, too. She’s talking so much and coming up with the most hysterical comebacks and responses. She just keeps me laughing so much of the time. And shaking my head.

We can’t keep her hair looking good for the life of us. She’s always rolling and running and braids fall out and ponytails sink down and bangs are constantly in her face. She makes a face when I put her in a dress and yet sprints to the nearest person and says, “Look, ___, Addie so pretty!”

She requests “Elmo” (Sesame Street) almost daily now, and happy to relive my childhood, happily DVR episodes for her. Every time, she points at the TV during the credits and yells “Where Elmo go?” even though she knows very well he rides in on his tricycle about ten seconds later.

She has become our pickier eater, or perhaps Zack has just started eating so much more now, but either way, dinner is always an adventure.

I’m more in love with my Scott when he’s in his Daddy Zone than any other time or place or circumstance.
He walks in the door from work and I basically shoo him into the living room to play with the kiddos. They are instantly all over him, giving hugs, offering “teapot” (Addie’s version of a tea party) and requesting books to read and wrestling together.
But it’s his bedtime rituals with the kiddos I adore most.
Last night, I hovered around a corner in the hallway, two sippie cups and two diapers in my hands, frozen. I had been coming out of the laundry room when I heard him in Addie’s room, doing a role call of all of her animals.
“And who’s this?,” he asks her.
With a giggle, she tells him.
They go back and forth like this through all eight or nine creatures.
He does this to make her feel comfortable and to let her know she is surrounded by love as she goes to sleep. But she doesn’t need any of the Guppies or the bear or even the puppy blanket. Her Daddy showers her (and Zack) with love.

Scott and I are better than ever. It’s back to basics.
Hand holding and driving adventures and silly jokes and showing the other person you care.
He’s been patient with my need-this-for-the-house list and has put up shelves, hooked up electronics and nearly singlehandedly moved large furniture.

I’m happy for where we are, literally but also this very figurative place, too.

We are in a happy place that needs no address.

You’re FOUR!


I don’t know if it’s more difficult for me to accept that you’re four years old or that I’ve been a mother for that long.

Zachary, you made me a mother. It’s the most amazing title I will ever own. I am forever grateful to you and to this beautiful, crazy, amazing world for bringing you into my heart.

It’s not the motherhood I imagined.

Because it’s better.


You bring love and joy to all who meet you. Tough little bullies melt when you become their friend. Boys who were just getting yelled at by your teacher then bear hug you in the hallway just minutes later, calling you Zacky. They are so excited when you enter the classroom. I know very, very few people who actually bring light to those around them the way you do already. Imagine when you’ve mastered speech and communication? We will all be incredibly blessed to feel your love in other ways.


I will never in all of my life forget how my heart felt the first time I saw you. An operating room is not the typical place to meet the love of your life, but there you were, those dark grey eyes meeting mine as a nurse held you. You were big and quiet and you spoke to me with those eyes.

Just a couple of days later, the twinkle in your eyes turned out to be a sign of Down Syndrome. I sat at the edge of my hospital bed that night and stared at you, brushing the top of my hand along your forehead and hair and trying to wrap my brain around the news. And then, without warning, your eyes just opened up and twinkled up at me with a half-smile. We would be OK, we would be OK, we would be OK.

And that was that.


You are not Down Syndrome. You are not special needs. You are not even a “special” child… you have tantrums, you are strong-willed, you sometimes don’t listen and you sometimes push your sister. You are an almost-four-year-old. My almost-four-year-old.

In recent weeks, your speech is taking off. We’re hearing two and even three-word sentences here and there; you’re responding to questions and communicating needs and wants. I don’t know how to describe what that means to us.


You love the waves on a beach. It’s about the only time I see you truly fearless and completely uninhibited. You hold an adult’s hands above your head and leap in the air with a shriek with each crashing wave.


You’re so loved at school. In a couple of weeks, we have to say goodbye to this school and these friends and part of me aches. These teachers and your classmates have embraced you so beautifully and adore you so much. Their love and your growing knowledge and confidence have cemented the fact that yes, you can achieve ANYTHING and everything.

I have been incredibly touched by the friends who have come forward in the wake of our announcing our relocation. The one thing they all keep telling me? How sad they are that their children will not have a chance to grow up so close to you and with you; to have a chance to learn about the love you bring into this world and the lessons you can teach kids and parents alike. I can’t wait until you understand what a huge and beautiful thing that is; what a light you are in this world.


When we were visiting relatives in Asbury last month, you kept running to a nude framed sketch in the one room and yelling, “FALL DOWN!” We were all in hysterics. You were so concerned about this woman laying down on the wall.


Due to your little sister’s screaming at bedtime, you’ve gotten the “Big Boy Bed” in the Playroom at bedtime. The other night, I laid next to you and you said, “Sing!”

Sunshine?, I asked.

“Sunshine,” you smiled.

So we sang our song, “You are my sunshine.” You grin from side-to-side at that last “a-waaaaaaaaay.”

“Star?” you asked.

Twinkle?, I asked. You nodded.

So we sang Twinkle, twinkle little star.

And you put your arm under my head and patted my hair.

When we were done singing, you simply told me “Night-Night” and gave me a sloppy kiss on the lips.



Some days, I look at you with fear and ‘what if’s in my heart. But those days are few and far between now and I’m tougher and better at pushing scary thoughts (heart problems and low life expectancy and college and marriage and speech and mainstream school, oh my!) far, far away.

Most days, I look at you with pride. A pride that swells so much it all but suffocates me via love. I never knew these feelings existed. And I certainly had no idea that a 40-pound, four-year-old Little Man would be the one to bring those feelings into my life.


I will fight for you every day of my life with every bit of knowledge and power I can muster.


Z-Man, I love you. I love you as much for who you are and what you do as I do for what you make me and how you change me for the better.

I love you, I love you, I love you.







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Team Zack

Zack’s progress has always happened in waves.

For every surprise accomplishment came a three-month lull.

For every time we worked on walking and jumping and stepping, out came his first words.

When Down Syndrome enters your life and the life of your child, it is a never-ending road of questions, uncertainty, fighting and pushing.

There is no cure, there is no this-is-where-he-will-be-in-five-years.

You must find your resources (Early Intervention therapists, other parents, National Down Syndrome Society, special needs classrooms, and most importantly, yourself…); you must find your support.

And then you just dive in, give it your best, never look back and never look too far forward or you’ll drive yourself crazy.

When Zack was born, we didn’t know if he would ever speak or ever walk on his own. We had no clue if he would have major health issues or zero concerns at all (he falls at the low end of the middle — we battle respiratory illnesses for months at a time, he had two small holes in his heart that do not yet require surgery and a Man Parts issue forced a minor surgery two years ago).

At the end of the day, our prayers for Zack are exactly the same as those for Addie — that they be self-sufficient, polite, responsible, independent, intelligent kiddos and adults. That they enter mainstream school, are loved by their peers and teachers, complete high school and college, find a job that brings them joy and a man or woman who makes them complete and throw a dozen grand babies our way. We hope for graduation parties and Empty Nest Syndrome and a first dance together at their weddings.

And while we hope for the same goals, we realize the journey may be quite difficult for one (or both!).

Zack turns four in August and then we have one year before he should enter Kindergarden, maybe in our local public school system.

But maybe not. Maybe it will be in two years. Maybe three. Maybe it just can’t happen.

We realize both sides of the possibilities, but still we fight with every freakin’ ounce of energy and every bit of resources to make what’s  best for him, not us, happen.

So yesterday we met with his teacher and speech therapist from his special-needs classroom that he’s been attending two mornings a week since January.

Scott and I actually went into the meeting planning on gently removing Zack from the program as we felt he was with kids who demanded much more of the teachers’ attention than him and perhaps we just weren’t seeing the difference or the impact from there as we initially thought we would. It was a good problem to have, we thought. We were appreciative and we gave it a whirl, but hey, our boy is doing great in his “typical” Preschool three days a week!

But then we all got talking. Openly, honestly.

And we have a plan.

There is something about having a plan.

Even if it means more work or more time or more challenges at first. It’s a plan. It’s a step forward. It’s one step closer to that first day of Kindergarden at public school two miles up the road. The day I have been praying for and fearing for quite some time. Where I will lose my —- and bawl at the astonishing journey. But we’re not there yet, so hang tight Ole Emotional Momma.

So, in August, Zack will be trying the afternoon class at this location four days a week, while still maintaining his mornings at the other school. The afternoon class has more “advanced” kids and is a bit more challenging. And it’s primary focus? Kindergarden preparation.

It’s a no-brainer.

Four days may be too much, both schools might be too much. But, it’s my style to go all the way in and retreat a bit if necessary.

A woman I’ve only just recently met through Mary Kay wrote me a letter for Mothers Day. She follows our family through social media and her asking about Zack and Addie is always the first thing to happen when we are in the same room. That means a lot and I’ve always appreciated that.

But then, this letter.

I had actually received it two days before but in all the business of the week, it stayed tucked away in a bag until Wednesday.

This amazing woman of faith and strength shared that she had two special-needs children herself.

She gets it, I understood.

You see, just like the unwanted Motherless Daughters Club you are initiated into without request, so too is there a Special Needs Children Club that is scary yet so rewarding. The bond between we mothers is indescribable.


“I understand the day-to-day struggles and the day-to-day victories,” she wrote. “What some parents see as a small accomplishment, we see as a victory dance worthy.”

I smiled, I cried, I laughed out loud during her letter.

“God knew exactly the kind of Mom that Zack would need,” she shared. “The kind of Mom that would love him, protect him, nurture him, and yes, even fight for him. The kind of Mom that would get that glow in her eyes when she talks about him, post his artwork on FaceBook and sell Mary Kay so she could be home with him and his sister.”

The day I read that was a Battle Day. Battle with the kids’ strong wills. Battle with myself. Battle with DS.

And I opened that letter and it reminded me.

Not only am I not alone, but I am not allowed a pity party.

Zack’s parents, his family, our friends, even strangers are all working together. None of us know where he’ll be or what he’ll be doing in six months or six years or when he’s 26. I scare myself thinking about all the uncertainties.

But, like we said at the parent-teacher conference, we are all Team Zack.

Whatever it takes, we do. Whatever is recommended, we try.

Leave no stone unturned.

The thing is, even if he doesn’t go to college or marry a sweet partner, he will be happy, of that I’m sure.

And even if we never get a dance at his wedding, it’s alright, because he comes up to me several times a day, bows at his waist with a giant smile, holds out his arm and asks me to dance. I can never refuse.

And let me tell you, he’s got some great moves.


We partied like it was… 2012?

We had ourselves a lil birthday shindig the other day.

In honor of a lovely two-year-old and her and her family’s journey.

There was (eventually) sunshine, friends and family fluttering about the living room and yard. Lots of catching up, some new friends and a happy momma with a very full and happy heart.

Thank you to those who traveled hours to be a part of our celebration; thanks to those who gave our lucky little girl some new clothes and toys and books; and a thank you to those who sacrificed things they should have been doing or wanted to be doing to be a part of our girl’s day.


I still can’t believe she is two.

Two going on 16.


Addie, you are loved!


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Just another day

Just another day, just a few random thoughts.

When did she go from sobbing at the mere impression that she was disappointing us (you know, that moment when one small hand is laying on top of the dog food, “NO!” has just been screamed from across the room and the lip begins to pucker up) to looking at me the way I used to squint my disgusted teenage eyes at my dad years and years ago?

We had five steps right off the bat today — five steps to follow a kitty the very second her feet touched the hardwood floors this morning. (The record is still seven steps at once).

She turned 11 months yesterday and the fact that it’s a matter of weeks or days until her first birthday terrifies and amazes me. I can say that we have made the most of every day in this house this past year. I can also say that while there were times, especially early on, that I locked myself in the bathroom to simply sit in a quiet room and breathe for five minutes (or times like today when I cracked open a Sam Adams with the country-song-proclamation that it’s “five o’clock somewhere), I think we’ve done a damn fine job at juggling two babies.


She’s always looking at something from the corner of her eye. She’s always busy, but she’s always watching, don’t doubt that for a moment.

He is always moving. Climbing up on the radiator, squeezing (and then getting stuck) through an open gate or doorway, landing on top of a cat at fifty miles an hour.

But he’s still so loving. He understands “kisses” and now “smooch!” and gives them away with a beautiful smile to accompany them.

He said “waffle” this morning and is perfecting his “push” and “pull” and “out” sounds. Speaking of out — this boy wants to be outside at ALL times. As soon as the door opens, he’s grabbing the first shoe he can find (usually one of my ballet flats or a slipper of Scott’s) and has a hand on the back doorknob.

I can’t help but laugh when he plays his latest game of grabbing a nearby ice cream bucket, empty baby wipes box or a blanket and throws it over Addie’s head. I say “can’t help but laugh” because in that moment, Addie FREAKS THE FREAK OUT! And there I am, laughing like a good mom.

Oh and there was that cute little outburst of what sounded like “Oh s—!” from Little Man during one of my best friends’ baby shower. (You know, that quiet moment in between opening presents). Giggles.

Addie is finishing up her nap (I know she’s still sleeping because she hasn’t begun slamming her crib against the wall in protest — no, seriously, you can’t make this up) and Z-Man is sitting in his Cars seat eating goldfish and moving his arms up and down (“dancing”) to the music I’m playing currently. It’s a good moment.

I’ve got a pork roast in the crock pot with homemade barbecue sauce Scott created yesterday sometime in between a 10-hour-day, dinner, playtime and bedtime with two babies and cooking a delicious dinner for us last night. Laundry’s underway. I cleaned half of the house (and rediscovered our basement and one of the first photos of myself and Scott together in the process!). Almost done with that Sam Adams. Did some photography research and practiced some Lightroom editing. And even did a blog entry! And it’s only 3 p.m.

I flip on the news every now and then, yell at myself for watching all of the frustrating events in Boston, turn it off, flip it back on, and around and around we go.

But soon, the TV will turn off, the computer (and iPad and iPhone…) will go away, the camera gets put down and I’ll make sure I’m truly living in the moment. I’m sure there will be squished goldfish in my future. Maybe a slamming of a crib against a wall. Probably another Sam Adams.

And love.
And giggles.
And just another beautiful, beautiful day. April19-1











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.









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 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 (

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 —

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.


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.