The Skating Rink

We’re all about adventures.

Starting on New Years Eve. (We didn’t wait for some silly date on the calendar to regroup our family this year and it was WONDERFUL).

So despite a terrorist issue in Rochester on Dec. 31 (sigh), we trekked out as planned to the nearby skating rink for our family’s first ice skating adventure.

Addie has been gliding around the house in her “skate shoes” (Elsa sneakers) for weeks now and was completely in awe when we told her our plan.

If you wanted to fast forward about 10 paragraphs, you’d learn this:

It was an incredible experience in the end. But it took some work.

 

We were toying with over-stimulated children, funked-up routines and the beginning of bedtime, not to mention potential crowds and a new activity. Scott and I hadn’t been on ice in probably 10-plus years and the kids have never seen it other than at a hockey game a couple of months ago.

 

The crowds weren’t too bad and we got our admission and skate rentals with little fuss or delay.

And then the skates.

I feel like one of the many parenting classes they should offer when you decide you want to have children (in addition to Do You Have Common Sense and Don’t Do Stupid Things That Will Get You on the 5pm News) is How to Put Skates on Young Children While Maintaining Some Calmness and Not Creating a Scene.

Addie’s went on relatively easy, especially once I reminder her that she’d be on the ice in a few minutes. She stood right up and was walking in the skates like it was no big deal. Shaking my head, I tell ya, this kid.

But we had some trouble with Zack. Our initial pair we got was too small. He was already in Meltdown Mode after the first attempt and nearly lost his mind wailing on the carpet of the locker room as we waited for Scott to return with the second pair. It’s all good, because we got them on and soon enough, we were marching to the Kiddie Rink like the Jets and the Sharks in the opening scenes of West Side Story. I’m pretty sure we thought we were a big deal, with a bit of swagger and some cocky smiles. Fools!

Scott took Zack and soon realized the Z-Man was not going to do a thing. Not one ounce of balance or coordination and 40 pounds of scrambling, laughing kid in his arms. Addie wasn’t too bad, but just got way too excited and was pretty much attempting a triple axel on her first step on the ice. I was much worse a skater than she was, so our first lap (OK, our first eight) were PAINFULLY slow.

Scott was so worn out from essentially hunching over and carrying Zack on the ice that the two guys took a break. As Addie and I came around the straightaway towards them I saw Scott and the grandmother-woman-watcher next to him interacting and she was waving towards her granddaughter and family on the ice, using a red chair-like device that’s an option for teaching skating.

And she gave us their red chair. She grabbed my hand as I steadied my hand on the wall in front of her. Scott was positioning Zack in the red thingy-ma-jiggy and I was trying not to feel the screaming chant of “Down Syndrome comes to skating rinks, too!” And this stranger patted my hand and said “Your family is beautiful. I hope this makes your night a special memory.”

And then Scott’s back was less sore, Zack was giggling lap after lap and Addie was showing off for the five older girls she had already made friends with. And I was there, the mother of this crazy clan, taking it all in. And trying not to fall down and really ruin the moment.

The craziest part of it all?

That we’re looking into ice skating lessons for BOTH kids.

 

 

 

Rewind and unwind

A friend recently asked me what my “word” of the moment was — am I feeling “grateful” or “blessed” or “rejuvenated” or “reflective” or the many other phrases that tend to get thrown out around this time of year?

Well, yes, definitely. But.

I think my word is

S U P P O R T E D.

 

We have had to make some gutsy, difficult changes and decisions this year — from a giant one like moving to a new home in a new town in a new state with nearly no loved ones nearby — to a small but powerful one like saying no to traveling and chaos and squeezing in too many visits with too little time for the holidays. Instead, we’re staying tucked in tight as a family of four to enjoy the first bit of quiet “us” time that we’ve managed since the move. To start some new traditions and just… unwind. And yet, we are supported. Cousins and aunts and uncles “get” it — they know that in a perfect world, we’d most definitely be around their tables and laughing with them, showering the kiddos with chickey kisses and cousin squeezes and a roomful of love. And those same families understood our reasons for our relocation. So many have visited us already and each time there is a knock on that front door, I feel all of that gratitude and blessings. And support.

I’ve had to make some semi-selfish moves individually for my photography business, too. My biggest supporter has been my hubby Scott. He has never once asked me to stop or slow down or reconsider. He hasn’t questioned new lenses or workshops. He has given his support in many ways. Weeks with 60 hours of work have sometimes led to an entire day alone with the kiddos as I photograph a wedding all Saturday and then am a half-zombie uploading previews on a Sunday. Every new wedding booked is met with excitement and patience as I spew details about venues and styles and how they met.

 

Recently, a fantastic opportunity presented itself that merged both my photography and my personal life. I was asked to participate in a photo shoot in New York City with the National Down Syndrome Society featuring more than 50 models of all ages with Down Syndrome. Each model received pampering from our hair and makeup volunteers and got decked out in costumes to look and feel the part of some of the most iconic rockstars. I (along with two other photographers) met my new friends and captured some dance moves, rockstar attitudes and sweet smiles on a cobblestone street in NYC. And as much fun as that was, the best part was talking with their parents and siblings, hearing about their accomplishments, receiving secrets about their dreams and goals. And the BEST hugs and handshakes and laughs imaginable.

Back to support.

No one ever questioned me when I made an impulsive decision to just do this crazy thing — leave home for two days, fly to New York City, edit, share and digest the whole experience. Scott knew I had to do this and he was really, really proud. And my aunt came to watch the kids for us while Scott was at work. It was not an easy time for either of them but they held down the fort so I could scratch something off of my bucket list five hours away.

It was not an easy couple of days. I met families who have had really difficult health issues that we’ve been fortunate enough to avoid so far with Zack. I heard stories from moms who have had to fight for equal treatment, equal education, rights and opportunities.

And I saw a lot of dance parties. I saw siblings completely smitten with their brother or sister, moms who could not have been more proud, teens and adults in college or living on their own.

I’ll be returning to NYC in March to see the NDSS’s annual auction and gala event which will showcase our final images from the photo shoot in large posters at BB Kings’ House of Blues. And to reunite with some of my new friends.

I’m still wrapping my head around the experience.

 

So, with the completion of the NDSS shoot, my photography is all wrapped up for a couple of months. (I’ve even started scheduling some social media posts well in advance so that I can truly take a step back and enjoy some family and me time). I am so excited for the weddings I have on the books already for 2016 and 2017 and all of the couples and families I’m getting to know.

And I’m really relived to finally be able to unwind.

We’re ready for our quiet family Christmas. The kids are not receiving a lot of presents from us (our extended family *might* have gone overboard with the material items!) and are aware of things like “being a good friend” and “baby Jesus’s birthday” and little snippets like “Christmas magic” and “the star that showed them where to go.” All of those things seem much more important than what’s under any wrapping paper, so our holiday has already gotten off to a great start.

We’ve started traditions of watching holiday movies and reading books together more often. We baked two batches of cookies this week. We’re looking for our Elf, Louie, every morning (he might have been hugging a wine bottle today, haha!).

I have some hot cocoa cooling down in the kitchen so we can sing the Polar Express “Hot Chocolate” song together and enjoy a little treat. (Even though, you’re never, ever supposed to let it cool).

There is more time to be spontaneous with hide-and-seek requests and sought-after snuggles, too. Life is pretty good. We are supported and we are supporting each other.

 

Some updates:

Zack is still not in school. We had some mix-ups with paperwork and school district communication. (We’ve since taken care of it while not always using our nice voice and words). He has a tutor that comes to the house every day for an hour for coloring, letters, shapes, etc. We then have two days of evaluations the first week of January. Once that’s complete, we’re just a transition meeting away from finding him a good place to learn and play.

He’s still a lovebug most of the time, although he’s getting too old for Momma’s constant hug and smooch requests. I know not to pull away from a squeeze first. He has had some issues with being a little rough and not knowing his boundaries, but we’re hoping the return of some therapists in the new year will help considerably. His speech has improved quite a bit recently. He’ll do back-and-forth dialogues very well and on a good day, surprises his tutor with the letters, words, numbers and colors he can identify.

Z-Man is currently obsessed with PopEye (“Spinach”) and does the best impression of the old sailor. He also loves Buzz Lightyear, reading, playing imagination games with little toys and eating.

 

Addie is still our ornery, dramatic, princess-loving little girl. Her favorite color is still purple and we seem to be over the phase where ALL she would wear were skirts. She loves dancing and singing made-up songs (very loudly). She says “for” instead of “or.” “Do you want red for blue?” She is still very, very witty, too, and has some pretty funny one-liners and responses.

She has an entire imaginary persona named Square-ta. Who has glitter. And she stores her glitter in a yellow box under her bed. The yellow box has a squeaky lid, and, according to recent Addie reports, “it just keeps getting squeakier every day.” (There is nothing under her bed, FYI).

Last night at a restaurant, the waitress called Addie “sweetie.” Addie stopped coloring, looked up and in a very sassy manner said, “I have a name, you know.” (Zack, meanwhile, started making smoochey faces and waved his hand toward the restaurant exclaiming, “Come here, I want to kiss you.”)

 

We are about to start our couple of quiet Christmas-y days and we wish you and yours time with family and loved ones, a little bit of relaxation, a lot of love.

(And lots more blog posts in 2016!).

 

You can view a recap of my NDSS photo shoot experience HERE.

You can learn more about the March gala and other NDSS events HERE.

You can view my photography page and see some of this year’s weddings and engagements HERE.

Our photo shoot was featured on TheMighty.com — you can see our story HERE.

 

The sweetness of Autumn and awareness

A springtime of transition, a summer of moving and fresh starts. And now, finally, my desired and treasured normalcy.

Oh, normal. What are you?

More obvious than the 11 other months, my version of “normal” looks me straight in the eye as we celebrate Down Syndrome Awareness Month with friends in the National Down Syndrome Society and friends across the country doing their best to dispel myths and undo “R”-words.

My friend Nicole is using her love for Zack and the eye-opening experience we’ve brought to her in beautiful capturing families living with and loving DS in the Boston area. You can see some of her work here.

And in just a few weeks, she and I begin an adventure together, documenting people with DS from across the East Coast and of all ages for the NDSS annual Gala event that takes place in March and features some of their best advocates, supporters and fundraising of the year. It’s an honor that leaves me in disbelief. How five years ago we were still scared and wrapping our minds around a diagnosis that offers endless questions and few answers. And now, my camera and I get to be a part of something that brought us and brings to so many knowledge, education and a reprieve of fear.

Zack is doing fantastic. He never ceases to amaze just when we need to see it most. A couple of months without school and in a new environment took some getting used to for all of us. We’re still considering the many options that our fantastic school district is offering us, and in the meantime they are providing a tutor and some therapy services here in our home every day. It’s a way for him to ease back into a day of lessons and hustle and bustle and learning new things. And it also buys us some time to find the best option for him without feeling the pressure to make that decision too quickly.

He professed his love for his tutor within their first 30 minutes together. That’s just his style. And I used to think, “Wow, I waited YEARS to hear those words and now he gives them away so easily.” I used to almost sadden at the way he shared his hugs and kisses. But yes, I’ve realized how spoiled our large group is. The group that receives a giving love. A love with blue almond eyes and squeezy hugs. A love that comes in wet kisses and little belly laughs. I’m so lucky to be one of the many that he loves. And feel so blessed that maybe we had one small thing to do with that endless love.

And Addie is incredible in so many ways. She is smart and witty and has us in stitches on an hourly basis. She has an alternative personality named “Squerta” who has a yellow box with a squeaky lid in which she stores her glitter. I’m telling you, I have definitely been writing down a lot of her sayings and will think of you when I’m a millionaire from the best-selling novel I’ll write with them!

She loves her brother. So much. If he falls or is sad, she’s immediately got an arm around him. If he’s laughing, she starts giggling. If he’s sleeping, she wants to lay next to him and tuck him in. And it’s almost like she “gets” it — the DS thing — I can almost see the wheels turning when Zack’s tutor comes to “play” with him and she can’t join. She really doesn’t protest it. And when we go to see his schools, I watch her spy kids in wheelchairs or walking down the hallway with hands in teacher’s hands and I swear part of her understands the whole thing.

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During the move, I found the paperwork confirming Zack’s DS diagnosis and it brought back a flood of emotions. The squiggly chromosome diagrams and brochures with funny initials that brought about panic and fear and sadness and grief and then back around to panic. Those days where I knew where I wanted to be and how I wanted us to live our lives but didn’t know how to make it happen.

And sometimes, I’m at a window or photographing an engagement session at a park and I’m part of a spectacular sunset with bright colors only possible in the Fall. I can talk to near-strangers or new friends about DS and about our first-born who has taught us immeasurable things. In the rare mornings when I’m up and about before the first stir of a child, I find myself on our deck in our new house, sitting on the swing with a shiver from the dewy Autumn morning. And I look around and realize…

That I am where I wanted to be.

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A friend of mine from years ago recently found out their baby, due next year, has DS. She called me in tears one night, the first time I heard her voice in nearly a decade. And in her, I heard the me of five years ago. And I just kept telling her over and over again the only thing for sure I know to be true:

This is not the life we had planned.
But, gosh, we have such an amazing life.

We have an updated fundraising page in Zack’s name. You can donate $1 or $50 or whatever is comfortable, in honor of Zack, whether you’ve received one of his bear hugs or just can’t wait for your turn. Every single penny goes towards the National Down Syndrome Society, which provides not only peace and resources for new and expectant parents, but also research on Down Syndrome and incredible events throughout the year and across the nation. Women like NDSS President Sara Weir and so many others that are almost like family have brought such comfort to our lives. They work tirelessly, constantly riding trains back and forth and sending emails to and fro, just to make a difference.

You can visit our page here.

I see you…

You’re over there, pushing the cutest little blond boy on the red swing. He’s smiling a sleepy, peaceful smile that gets bigger when you surprise him with a tickle up his legs.

I see you twist around anxiously to watch a ponytailed three-year-old hop up fearlessly to the top of the tall slide, the one you think she’s too small for, but can’t convince her otherwise. I can actually see you hold your breath as you let her have this independent moment and try to keep it cool for the giggling boy next to you.

I see you.

You’re glancing at the little boy’s almond eyes with such a mix of love, compassion, worry, fear, hope, I can almost feel the heaviness in your shoulders. My gosh, that love. The pride you have when he makes a statement third-person about “Zacky” wanting to swing or needing a drink. You love those muffled words, those little phrases that you understand better than anyone else and that have taken hours upon hours of therapies and practices.

You’ve scooped up Miss Ponytail, twirling her and brushing back the fine strands that never stay in place. Her laughter inspires your laughter and Big Brother travels over to join the fun.

I see you.

Your embarrassment over the tantrum that was much worse to you than anyone else.

The mix of fear and exhaustion when he runs away, not understanding danger. You understand it too well.

I can imagine you holding a dance party in your living room. Some CCR on Pandora and four little hands mimicking your shakes.

I see you when she jumps up in bed at 5:45a.m., full of energy and questions. Your mind hasn’t woken up yet so its all about pulling her in close and smelling her hair and squeezing her tight.

I can imagine the way you internally jump for joy when, instead of his usual “No Kiss-a Me,” he asks you to stay with him in bed at nighttime and you pet his hair and caress the freckle behind his right ear and sing his favorite song.

I see your hands. That push swings for contented boys and steady brave little girls. That wipe tears and create imaginary pixie dust in different colors to solve different problems. That pick up strewn toys and flatten PlayDoh.

The hips that have held infants then toddlers and now 40-pound kiddos. They handle bouncing camera bags and your treasured DSLR.

Eyes that pore over chromosome diagrams and research papers and photo editing. That attempt the stack of neglected magazines.

I see you. Doing your best and trying so hard. You do your best when you don’t even try at all, when you just let it be, let it happen.

I see you. Do you see yourself?

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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.

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The Registrar

It was supposed to be a simple meeting.

“Ten minutes,” the e-mail read from the school district registrar.

We’ve decided to go ahead with registering Zack for Kindergarden so that we may have another evaluation, receive recommendations on where he would best learn, tour a couple of the local schools and THEN make a final decision.

First of all, wow, What a process! We’ve met with a Special Education team shortly after we updated his IEP. They were completely torn on whether to hold him back another year (since he JUST started his new school and JUST got a new IEP and JUST added Occupational Therapy and JUST started receiving help from his aide) or have him start Kindergarden in September (because he would do well with routine and structure and he’s improved so much just in a couple of months, etc).

So after I assembled his birth certificate, social security card, immunization records and completed a 30-minute long online application, I made the ten-minute meeting with the registrar just to finalize and formalize and move ahead.

A very polite woman in her 40s gave Addie some coloring books and sat me at her desk at the district office. I smiled, nodded, gave the paperwork.

She came back from making copies and said, “OK, so your home school is… ”

The answer should have been Dana Street Elementary. It’s five blocks away. That one or the State Street Elementary, in the next town, with a great LifeSkills system in place, are our two options. But the key thing is we have at least two options.

This woman interrupted herself, mumbled, “Oh, that’s right, IEP… hmm, Down Syndrome…”

And then said.

“It doesn’t matter what his home school is. LifeSkills, right?”

Like it was nothing.

Like she didn’t just say something that made me want to punch a stranger. In the face. In front of my two-year-old daughter.

I kept my Jersey in check and didn’t cause too much of a scene, although I did make it very, very clear that we are looking for an evaluation, considering both possibilities and will pretty much be leading the process based off of what’s best for Zack.

To which she replied, “Well that’s not typically how we do things with… this… sort of thing.”

I didn’t even question what sort of thing or why there was a “typical.”

But gosh, last night was just exhausting. Mentally exhausting. Because there are a thousand fights to be fought for ZMan just to make sure he is given a freakin’ chance. For my beloved potential and possibility.

In six months, Zack may very well enter a LifeSkills class and never look back. Or he might be in a regular classroom down the road. Or we might wait another year and enjoy Pre-K some more.

But whatever decision we make, it will be based off of looking at ALL of the options. Not just what’s “typical” or what might seem obvious to a 40-year-old polite lady in a crowded office.

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Sometimes, I forget to stop. To just stop and observe and enjoy and not worry about tomorrow or next day or even the next five minutes. To let the dishes sit in the sink another hour and to use a high-pitched princess voice or a mean and tough fighting turtle voice amidst a backdrop of laughter.

So today, I stopped.

I spent my morning with a little girl who seemed to appreciate my pause and to notice my effort. She wrapped herself around me like a pretzel, petting my hair and singing me songs and stopping to tell me “You never be sad again. You are my happy girl. You… I make you happy.” How could you argue that?

And so I was Aurora and she was Cinderella and we spent two straight hours crawling around and playing pretend.

I had to take the dog to the groomers (And yes, you should ask Scott about why his beloved puppy may or may not have a rhinestone crown and a ponytail, muhahaha) and we made it into an adventure.

It took far longer to get coats and boots on and then shovel the car out of the snow then the time it took to walk Izzie inside the building that was just four blocks away.  But when we returned to the car and Addie said, “I love adventure!”, I just couldn’t resist. So we drove around for a few minutes and looked for a tree and a heart and other fun landmarks. We got home just in time to get Zack off of the bus and my sweet girl was watching me from the living room window, waving and smiling.

And then we made baked goods because… well, because Addie came into the kitchen, sat down in the chair and proclaimed, “I help Momma cook.” And so now we have two dozen lemon bars.

Just now, I heard some noise from Zack’s room during naptime and so I went in to see what stall tactic he was working today. We’ve pretty much given up on an official naptime for him, but created a fun “nook” in his oversize closet with some books and blankets. We figure a quiet time is better than Mommy losing her sanity.

I peeked in through the crack of the doorway, and saw him hunched over pieces of his yellow car track. He had put about four curvy pieces together and was struggling with the last two parts. He looked up at me and said, very quietly, “Stuck.”

I sat down on the carpet next to him and didn’t put it together for him, but just brushed a blonde strand out of his eyes and encouraged him to keep trying. And when he did, after what felt like the longest five minutes of my life, he looked up at me with the widest grin and such twinkling eyes and wrapped his arms around my neck in a hug.

“Wuv you, Momma.”

I could have ignored the noise or not made an unnecessary dessert. I could have checked more e-mails or washed those dishes.

But today, I lived. I loved.

And I created adventures and soaked in successes.

Where we are

One of my resolutions on the 1st (I wrote a long list this year) was to blog more often. I’m hoping we can all pretend that the first two weeks of the new year without a post never even happened and we can start working on this resolution from here on out, OK?

One of the reasons we haven’t had a blog post is because we’ve been so busy (Wendy’s photography business and Mary Kay team, visiting family, meetings with Zack’s school and much more). The other reason why we haven’t had a blog post is because among all of that craziness, I’m working really, really hard to disconnect more often and for longer periods of time and just be living in the quiet moment of Now. So, the kids and I have been playing pretend games together and Scott and I have enjoyed time together with some new favorite shows and even a game or two. I sometimes get so stuck on what I should be doing; who I should be helping; what I should be planning… that I forget about me and about Scott, Zack and Addie. No more of that nonsense. It’s all about balance.

So here we are.

I woke up a few days ago and just felt like we were on the cusp of something huge; something much greater than just a new year or a new month. We have spent so much of the past year transitioning from one home to another, one job to another, one lifestyle to another, that I finally feel as though we are ready to just live it now. To just be where we are and not where we are going or where we were.

Life is such an amazing adventure. I just want to soak up every minute of my journey.

Zack and Addie are the most wonderful little humans I’ve ever known. I might be biased.

Addie is so quick and witty. She greeted me at 7 a.m. today by shouting “Open the door, please, it’s good morning!” And when I opened the door, she reached out with her hand, shook mine and said, “Glad to meet you, Momma.”

She just continuously makes me laugh. More than four months after moving in to our home, she still asks her grandparents and random strangers if they want to come see her new room.

Her imagination is insane. She jumps from princesses in peril to babies and towers and hammering things that need fixed all within about 20 minutes. And there is so much drama! She knows how to work a pouty lip and lower her eyes and glance up at you through her dark eyelashes. You can’t not smile, I guarantee it.

We had some trouble with her stubbornness and strong disposition, but now we are getting a better handle on how to make her want to be a good girl instead of just going into discipline-the-bad-girl mode. She is relatively quick to clean up her toys, many times without me even asking, and she’s even more tolerant about sharing and brother hugs.

I love her quiet moments so very much.

The other day, I think we both wanted and needed some cuddly time together, so I suggested we watch a show under the blankets together while Zack was at school. I suggested princess movies and Bubble Guppies and even Dr. Seuss.

“No, momma,” She said. “I want to watch Momma’s show.”

I didn’t think it would last, but I gave it a try and flipped on the last 20 minutes of a terribly cheesy movie I watch on repeat whenever I get 20 minutes to catch my breath or eat a snack. She watched it all with me and held my hand tight. Near the end, she pointed to the lead female character, in a slightly sad scene, and told me that it was Momma.

But then quickly, she turned to look at me, put my face in her hands and said, “But Momma is happy because Addie makes Momma happy.”

She’s correct.

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And the Z-Man. Oh, how he is growing in so many ways in these recent weeks.

We are moving forward with getting him an aide for school and at home (about 14 hours/week total to start) and as long as the Commonwealth approves it, he’ll have someone by his side within the next two weeks. HIs most recent IEP meeting to discuss our plan for him for the next year, went well, all things considered.

It’s never easy to read a booklet on the most minute details of your firstborn. It’s never an enjoyable experience to hear things like “lifetime of needing special assistance” and “safety issues to himself” or words like “delay” and “lacking.” It doesn’t matter that we’ve done these types of meetings numerous times. It doesn’t matter that we are always grateful for them and for the handful of people in the room who care so much about Zack that it’s almost like he’s theirs, too. For me, it’s always like a rehashing of his Down Syndrome diagnosis. I grieve for a day or two, and then, we’re all OK. And I begin moving a thousand miles an hour to work on new ideas and areas of concentration. We’re asking a lot of “wh” questions (What color is that? Where is this?) to work on speech and we’ve got a lot of work to do to keep him attending to tasks without disrupting others or posing a safety concern to himself. But we have plans and we have dreams and they are all big and we are so excited.

Zack’s teacher spoke of his potential and she did it in such a proud way that I think “potential” is my current favorite word. Isn’t it exhilarating what power ‘potential’ has? You can do amazing things and be amazing. You can work to reach your potential because no one’s potential is just handed to them. Potential is a beautiful thing.

Zack has a good friend at school named Maggie. She’s a very quiet, shy girl who doesn’t typically like to be touched or disrupted, especially if she’s feeling a little anxiety. But for whatever reason, Zack can approach Maggie in any situation and hug her or hold her hand and she always lets him. This morning, it was just Zack and Maggie on the van to school. When we opened the door and he saw her, Zack just smiled and kept saying her name over and over like a song. Before I closed the door, I saw they were already holding hands.

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So here’s to more blogs. And to potential. And to holding hands and making people happy. Because that’s right where we are now.

‘Love is who we are… “

I am listening to Sara Bareilles’ “Love is Christmas” and “Winter Song” on repeat with giggles in the air and assorted play food on the floor. My daughter offers me a “teapot” and my son is singing random words to the song with a smile on his face.

We are preparing for a wintery coating and a couple of days without Daddy. My heart is content despite the shoveling and the missing I’m about to do.

“I don’t care if it’s gonna rain, our little room is warm and stable…”

*
We shared an amazing belated Thanksgiving celebration with 10 of the best loved ones. Giggles and good smells and gifts and delicious food. People who traveled far and wide just for a few hours in our new home.

We were cramped and it was loud but my gosh, was there love. In chickey kisses and hand pats and camera clicks and bites of yumminess.

“I don’t care if the house is packed or the strings of light are broken…”

*
One of my bestest friends and my favorite 2014 bride, Kacey (the Caboose!) and her hubby Drew came to our house on Saturday for a visit and again, full heart. They trekked up the TurnPike in a torrential downpour but arrived with smiles and excitement. We shared coffee and local pizza and silly games with the kids. We played adult games after bedtime for babies and even shared a glass or two of wine. We watched their wedding video and laughed over how I messed up the bouquet not once, but twice! Addie thought Kacey was a princess and both kids were attached to Drew the entire time. (The cat, too!)

I am so constantly grateful for loved ones who make the effort and sacrifice just for some time in our world.

“All we need is your best my love; that’s all anyone ever wanted…”

*On Sunday, we went to a fun Breakfast with Santa event. I finally located the local Down Syndrome support group, PODS of NEPA, and we were invited to their event this weekend.

We weren’t sure to expect, and honestly, I had to do some convincing to get Scott excited about it at all, but boy, were we surprised.

We walked through the doors of a catering hall 40 minutes north of us and before we spotted the beautiful decorations and centerpieces, the magnets and other 3-21 giveaway items, the kindness of strangers, we noticed hundreds of people. At least 50 families who “get it” or “got it” or are “getting it” just like us.

Babies with almond eyes and adults with kind smiles; verbal and nonverbal kiddos of all ages; talk of aides and school and independent living.

We sat with a family of four — a nine-year-old boy with DS, his 12-year-old big brother and their mom and dad. By the end of the morning, with coats on, we were celebrating their son’s bravery in finally trusting Santa’s lap and exchanging business cards and well wishes and promises of friendship.

I just kept looking around, whispering “Look at this, my love,” to the toddler on my lap.

I watched little Alex stroke his Mom’s cheek with a piece of hair he pulled from behind her ear and told her how Z-Man does the same thing to me. We shared one of my favorite smiles and a nod.

And while Zack was quite happy to meet Santa, Addie was not so pleased — at least not until the snowman character picked her up for a few minutes. Sorry for crashing your photos, other kids! She tells us on repeat still:

“Addie cried… I just wanted to see Snowman… Snowman said ‘hi’ to me…”

Even after five goodbyes, when I spotted Alex’s mom in the lobby on our way to the car, I went in for the sort-of-creepy-mom-who-needs-to-get-out-more hug. And she hugged me back tightly. And Scott and I both keep saying how we feel much less alone now.

“I’ll be your harvester of light and send it out tonight so we can start again…”

I think as I get older, it’s not that I realize what’s truly important — it’s simply that I appreciate it all — the good, the bad, the easy, the hard, the dreams and the surprises.

Even something as simple as a makeshift tea party with a snowman-phobic little girl and her hair-petting big brother is an absolute treasure.

We have more Christmas carols to sing, snuggles to snuggle and traditions to turn into memories.

My life is very good. My life is filled with love.

Reminder days and promises

When Zack was seven days old, I held a chromosome test in my shaking hand. Two things happened.
Firstly, I wished so fervently that I had paid better attention in my science courses.
Secondly, I made a promise.

My promise was to this baby boy I barely knew at the time. I said “this will all be OK” to him, but really it was to me. I swore to him endless days of both of us working hard and pushing each other and making sure we left no stone unturned; that if it was the last and only thing I accomplished in my life, he would have years of independence and normalcy.

And today, in the simplest of phone calls from his teacher at school, I felt simultaneously like I was still keeping that promise and still failing him all at once.

Two and a half weeks ago, when we observed Zack in his school for a Halloween event, we saw firsthand and heard from his teacher that he needed a good amount of one-on-one attention from the staff during activities like circle time, reading, lessons, crafts. It saddened me a bit that day to see how the teachers took turns sitting beside him for a snack and a drink and a few minutes of Dora. I told myself to shake off that sadness another time and smile because my Cookie Monster was smiling, too.

But today, Miss Joanie said she couldn’t wait until the next event or observation or IEP meeting or evaluation. That Zack’s need for that one-on-one attention was so demanding and his constant running away from the activities or being distracted from the task at hand was not only draining their manpower from other students but most definitely hampering what she called his very awesome potential.

“He’s very, very smart,” she told me to fill the silence when she couldn’t hear me nodding politely and fighting a tear or two. “He is an incredible child. We all want what’s best for him.”

She’s sending paperwork home tomorrow all about TSS’s — basically an aide who will be by Zack’s side nonstop during school… this month, or this year, if we’re lucky, the teacher tells me, into Kindergarden and beyond.

I can’t say how much I love Zack’s school, and his teacher. How I feel like we are all on the same page, all on Team Zack.

You’re going to tell me the same thing my Dad told me this afternoon when I called him in tears.

Me: “I feel like I have failed him in some way.” (My dad tells me I’m stupid for thinking that.)
Me: “This is the furthest thing possible from an independent life.” (This is probably a really good thing, my dad assures me.)
Me: “I’m so strong and I’m so positive and I will do whatever I can for him if it’s best for him. Maybe I should have done more. I never thought he’d need such hands-on, in-your-face help.” (My dad half-laughs. It’s not what you want, he reminds me. It’s not about you, it’s not what’s easy. Just keep doing one day at a time. His future is going to be great.)

Tomorrow, I will take a list out of his backpack and instantly make phone calls and set up a series of interviews and another round of evaluations. And then someone will be by his side in his classroom, keeping him in his seat and putting pencils in his hand. Grabbing his attention, sometimes his hand. Tomorrow will suck.

Today sucks more.
Because today is like the day I held that chromosome test. I have already Google’d a thousand things about aides and TSS’s and yet another part of a future I don’t want for my child creeps into my head. Research and educating and an e-mail to family (er, please accept this blog entry?).

And then we inhale deeply and try to sleep today away. And make sure to write a note of gratitude to Miss Joanie in the morning. And turn around to the positive side and likely move on from it all before some of you even read this. We will appreciate extra help and extra possibilities. We will probably love him or her as much as we loved his Early Intervention therapists, some of whom we still FaceBook message and e-mail on a regular basis. Just like his first teachers. They’ve all been on Team Zack. If you’re not on our team, get off the freakin’ field.

I know how lucky I am and we are and how great Zack is doing. Vocabulary continues to grow by the day. Conversations happen and “I love you”s repeated. Eating difficult food with utensils on his own. Learning how to use the potty. He’s so, so smart.

It’s just that today, I need to let myself be angry and upset and just get through this in-my-face reminder. I have to again grieve a lost baby that we had planned for five years ago and reacquaint myself again with this beautiful boy who now rocks every minute of my life. Because every now and then, I forget that this is not what my other Mommy friends are doing. But I know also that there are a million Mommas with worse concerns and scarier moments.

Remind me that John Lennon said “Life is what happens when you’re busy making other plans,” I dare you. I’ve already listened to six Beatles songs today.

Every now and then, life and its’ plans stare me in the face. We salute our glasses, nod our heads, sing some John Lennon and we fight over who gets to hug Zack first and tighter and longer.

I will always fight harder. I will always squeeze tighter.
Like I did four years and three months ago. Then, I learned about an extra chromosome.
Today, I open my heart to an extra pair of hands. And am so grateful for my Dad 100 miles away in a restaurant parking lot reminding me of potential.

I will keep my promise, Zack.