Facts versus Life (A life with Down Syndrome)

We say that our life is not about Down Syndrome, and really, it’s not. But to ignore it is a tragedy; to forget the great resources that have helped to get us to the place we are today would be a terrible shame. So every year in March, we focus on bringing awareness of DS to as many people as we can — the amount of myths and misconceptions and old-fashioned ways of thinking do nothing but hurt the huge amount of possibilities for people like Zack.

3/21 is World Down Syndrome Day and this year, we ask that you do two things:

1. Consider a donation, no matter how big or small, in Zack’s name to the National Down Syndrome Society, hereAdventure (77 of 96) 20121029-093208.jpg.

2. Spread the word! Tell people how great a life Zack is living, how happy and blessed our family is! Share posts, visit http://www.ndss.org and make just one person think differently today.

 

We will be sharing more about DS throughout the week here, so stay tuned.

In the meantime, here are some great bits of DS knowledge, courtesy of NDSS, to help set things straight:

 

  • Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.
  • Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
  • There are more than 400,000 people living with Down syndrome in the United States.
  • Down syndrome occurs in people of all races and economic levels.
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
  • A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
  • People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
  • Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

– See more at: http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/#sthash.n1BVFA6p.dpuf

What they don’t tell you

There are a lot of tough careers out there — I feel like retail and hospitality, both of which I’ve worked in, are pretty intense and stressful; and the ups and downs of a journalism career had its own share of adrenaline rushes, good and bad.

But this stay-at-home mom adventure I’ve been on these past two months is the most incredible experience I’ve ever felt in my life.

It gives the most amazing highs of highs. Until you’re a mom, I’m sorry but you just may not get it. The patting of a little boy’s hand on your back and in your hair and his sweet, slobbery kisses. The way you look into her eyes and see yourself and the way you stop in your tracks because she really is that smart.

I love the snuggles on sick days, being the only one who can make it all better. I’m grateful for the trips to the park and the walks to see the ducks; the first days of school and the scheduling of playdates. It’s a lovely little world.

Until reality sets in.

Because there is this whole other side to raising kids full-time that is so incredibly painful, in ways you never knew you could hurt.

I talked with one of my dearest friends last night and over the phone we whispered about how we’ve thought about punting our children across the room. Not very lovely, huh? It was nice to know I wasn’t alone and we laughed it out for a few moments, boosting moods on a difficult day. But the sad truth is that some days it is so very hard to be a  good mom for 15 straight hours on six or less hours of sleep to children who can squeal in such a high pitch that neighborhood dogs must lose their minds. A victory is not hurling your child across the room. (I never have, by the way).

You see, it’s a life of repetition.

“No” times 48.

“Please get out of the cat littler.”

“I said NO TOUCH!”

“Why are you in the toilet???”

“We don’t throw books at our sister.”

“Get out of the cat litter. NOW.”

You watch your tax paperwork get drawn on with crayons. You see scribbles on your work calendar. The remote gets hidden in the garbage. Then later, in a couch cushion. And then in the goldfish bag. And the cracker explosion on the floor and a leaking sippy cup.

You see, it all happens while you’re picking up the books and cleaning up strewn cat litter and doing silly things like attempt to fold a load of laundry and use the bathroom. Or you’re feeding the cats (don’t worry, their bowls will be thrown on the floor later) or taking the dogs out (while a child sneaks into the mudroom and you’ll later find a spiky toy in your left boot.

And then.

You hear the toilet flush.

And none of that takes into account a severe case of cabin fever from all three of you during the coldest, snowiest, most severe winter you’ve experienced in this state.

Pleas of “Outside” have to be ignored because the wind chill is -15 degrees and the snow is two feet high. There’s only so many crafts you can make and PlayDoh you can smash and cut and roll into little balls.

And you can’t help but feel bitterness towards your spouse who is enjoying 45-minute car rides with music and scenery and who interacts with adults for hours every single day. He’s not singing the Thomas & Friends theme song and he’s definitely not folding the same shirt for the second time after it — and the rest of the laundry basket — was pulled down from the table. You know, while you were sweeping up cat litter. And then he enjoys a night out once a week for sports and friends. Adult friends, again. And he works long hours and is tired when he gets home, so can you blame him for relaxing for a few minutes on the couch?

On the plus side, I know now how to cook a decent meal (meat, potato, vegetables — you betcha!) while yelling “HOT!” 73 times in 34 minutes. I can also wash dishes while hopping on one foot. Because the left foot is balancing the dishwasher door semi-closed because a certain 21-month-old loves to take the dirty dishes out while you load up the machine.

Somewhere in there, I’m sending e-mails and Facebook messages and attempting conference calls to further two independent, self-employed businesses (shameless plug for www.marykay.com/wzook and wendyzookphotography.wordpress.com HERE). I am so motivated and so determined and frankly, I’m kicking butt… but imagine what I could do with two solid hours of dedicated time every now and then? Silly, I know.

Oh, and none of this takes into account a trip to the Emergency Room with your eldest, where you alternate between near hysteria and eerie calm because he can’t catch his breath between coughs and he just looks at you with such discomfort and sadness.

It’s here that two ladies and one man in scrubs attack you from all sides, asking about your street address and insurance, medical history and length of symptoms. While your three-year-old clings to you, sobbing hysterically, batting away the stethoscope.

You pace the room for an hour, you hold up his arms while he cries during an x-ray. You frantically tell the nurse about the hole in his heart, just in case you forgot or she didn’t hear. “And you remember he has Down Snydrome, right???” you yell through an open door over a blonde head still screaming.

You spend four sleepless nights with him on the couch, aggravating an old running injury but catching up on your Olympics coverage, mumbling over and over, “Shhh, shhhh, it’s alright. Sleep, baby.”

Somehow, the laundry never ends, despite the fact that you’re lucky if you change your clothes three times a week. Everyone else in the house has multiple outfit changes a day, however. Plus, you’re finally noticing all of the neglected housework — the dirty curtains that need washed and towels and such. There’s closets to organize and couch cushions to clean and floors to mop and clothes to donate and socks to match and, well, this list, my friends, never ends.

So, don’t forget the Mommies. The ones who clean snot and clip fingernails among tears. The ones who push aside every selfish impulse (minus a venting, rambling blog post, it seems), to take care of their family.

It’s an illusion. We like you to walk through our door and say, “Gee, how does she do it?”

We, meanwhile, ask ourselves at least once a day, usually while running over our to-do list at bedtime or while hiding in the bathroom after a particularly traumatizing temper tantrum: “How can I do this?”

But you can.

I can.

She can.

I have to go now — the kids just threw all the books onto the floor and I can’t find the remote.

I hope it’s not in the toilet.

 

 

Down Syndrome is/is not our world

It’s October and it’s Down Syndrome Awareness Month. But it’s also the peak of Autumn, the start of a school year and the end of the peak season at work.

I am in one of those moments. Suddenly, our world is not all about Down Syndrome. Our three-therapies-a-week are done; Early Intervention is two months in the past already. Zack is a superstar at his school and has made friends who hold his hands and call out his name. He is a loving, ornery big brother to Addie.

He says, “Come, Momma,” and grabs my hand to show me a toy.
If he sees me with my sandals, he exclaims, “Shoes!” and points to the door, wanting to go outside.

He gives me the most perfect hugs, rubbing the top of my back and petting my hair and saying, “Momma… momma… momma” over and over.

And if I say the word “kiss,” my lips are met with his and I feel so loved and I feel so much love.

I would love to talk to the me of three years ago — the new mother who immersed herself in DS websites and books and statistics that scared her. She worried about not doing enough; she worried about not teaching enough, not having enough of the right teachers in this unfair world.

I would tell her that she will be OK, but that more importantly, Zack will be OK and our family will be OK. I would tell her it’s not about what Zack is taught, but what he will teach so many around him.

So yes, we still struggle to understand his babblings and potty training is a work in progress; yes, we talk of things like “inclusion” and “IEP.”

As much as our world IS about Down Syndrome and the worries we have about its effect on Addie, not just Zack, our world really isn’t about it at all.

Our world is about a handsome blonde boy and a lil mischievous girl.
It’s about the way they hug and kiss and the babbles they share.

It’s about a little boy reading the Little Engine That Could and exclaiming “chop-choo” every few seconds. And me watching him, my heart beating outside my chest.

I knew you could, I knew you could, I knew you could…

I knew we could, I knew we could.

Your first day

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Little Z-Man, you are starting school this week.
It’s just a lil DayCare/Pre-K program we found for you that you’ll attend three days a week for a few hours each day, but it’s a big, big deal.

This is the beginning of your education, which I promise you is one of the most important and precious things you’ll ever be given (in addition to wisdom and street smarts and love and respect and kindness and freedom and strength and so many other things).

From this moment on, you’ll spend the better part of two decades learning things that won’t make sense now but you’ll appreciate in the future (like doing math without a calculator) and things you’ll wish you would have learned (like balancing a checkbook or killing a spider in the best way for your Momma).

From this week on, you’ll make friends you think you’ll keep forever. Most of them will fade away. The ones you work hard at and the ones you fit best wish will remain for years and years and years. They’ll know your every dirty secret (like the time you peed through your Pull-Ups on the first day of school, which I’m just calling now as happening on Wednesday). They’ll probably know more about your sister than your parents will, too, so keep them close and if they get any good dirt, beat up some boys and tell your Momma.

Some of your friendships you’ll lose. But the memories of those friends — the sleepovers, the laughs, the mistakes and the note-passing — these things you will carry with you forever. I still think about some of those moments from 20 years ago when a name pops up on FaceBook now and then. They made me who I am today — their families welcomed me in to their homes and fed me dinners and took me on vacations.

So all I can hope is that you will be brave and make friends. Build block towers together and chase each other outside at recess. I can’t wait until we all make new friends and I sip coffee with a new friend’s Momma while you play together.

Listen to your teachers. Always. I had some strict teachers and some easy ones; I had some kind ones and some mean ones. But they all taught me not just school lessons but life lessons. I had a second-grade teacher who sent me to the office during a lesson on prejudice and racism and discrimination simply because I had blue eyes. I’ll never forget the fear and confusion and sadness, but to this day, I remember Mrs. N and treat everyone I meet as an equal. My fourth-grade teacher came to Grandma’s funeral and gave me a great big hug that let me know she cared. That meant a lot. My sixth-grade teacher embraced my sarcasm but taught me not to ever cross the line. (I’m still working on this one) My sophomore English teacher told me I was a good writer and introduced me to the school newspaper. I’ve been writing almost every day of my life since then in some way. My freshman year of college, a professor made me feel like I was a number, not a person and I made it my goal never to just be a number in a group again but to always stand out as a good person. I hope you always respect and listen to teachers — they are not just adults at school — they are family, they are friends, they are coaches, they are sweet lil ladies in the fruit section of the supermarket.

I don’t know what education will be like for you. For reasons I will never understand but have to embrace, you were given challenges before you were even born. If I could have, I would have waved my magic Mommy wand and made all of your struggles disappear. But we are given obstacles and challenges for a reason. We must make the most of them and learn from them and grow from them. I hope that education pushes you but doesn’t tear you down; I hope people understand your challenges but never limit your possibility and potential. I will never settle than the absolute best for you and I will never, ever let someone tell us that you can’t do something. All of the above goes for your sister, too. You are both full of potential and I am going to make sure you have the brightest, happiest futures I can offer you.

We may have to take different approaches; we may have to take a detour or re-route our path. There are probably not going to be many shortcuts, but I promise you my patience and my help in any way I can give it.

And may the Lord protect anyone who disagrees with that.

So we start on Wednesday with a new backpack. In it will be a change of clothes and some Pull-Ups since you’re a Big Boy and learning to use the potty and it’s not always perfect. There also will be a communication log one of Mommy’s friends who works in Special Education recommended we start. I began with a letter to your teachers telling them thank you and letting them know all about your family and your favorite things. We’ll get little notes back from them talking about what you’re working on and how we can help and if you’ve had a good day or a bad day. We’re developing an IEP for you (Individualized Education Program, where we outline your potential and let your teachers know that you have a disability but you are not defined by that disability). You may even still receive some of your therapies (probably speech for sure, your toughest area currently).

If you get scared or lost for a moment, remember you love music and start yourself a dance party. I’ll be dancing in spirit right there with you, fingers pointing in the air. Or pick up a book and share a story with someone. Do what makes you happy and what makes you comfortable and the rest will come to you.

I am so blessed to be able to take you to your first day of school. We will make it short and sweet and Addie and I will offer you big hugs and kisses and find you a fun activity to start your day. I’ll squeeze Addie a little tighter and kiss her as I put her in the carseat. And I will try hard not to but very likely will bawl my eyes out for a few moments. I promise they will be happy tears because I’m so proud of you and I’m so proud of this huge, awesome support system you’ve had around you to get you ready for this day.

And I will have an extra cup of coffee and go and enjoy time with your little sister and some of Mommy’s friends and their babies. And just a few hours later, I will pick you up and I bet you anything that you’ll look bigger!

We never take anything for granted in life anymore. You have taught us about the many gifts in life. And this Wednesday, with your little “Zachary” backpack over your tiny shoulders, heading inside a building to meet new friends and learn lots of new things, you will give us another gift.

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“Dearest, when you go away
My heart will go, too,
Will be with you all the day,
All the night with you.
Where you are through lonely years,
There my heart will be.
I will guide you past all fears
And bring you back to me.”
(Edna St Vincent Millay, “Song”)

Growing

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

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

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

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

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

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

It all came together for me this week.

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

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

So we have been growing here.

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

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

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

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

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

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

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

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Things you should do in case the Mayans were right…

The world could end today.

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

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

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

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

Good luck!

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Letting it be and catching up

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

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

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

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

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

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

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* * *

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

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

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

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

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

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

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* * *

There’s a new baby in town.

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

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

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

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

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

* * *

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

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

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

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

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

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

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* * *

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

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

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

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

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

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

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

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

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

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Rabbit, rabbit

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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A letter to my littlest love

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

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

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

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

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

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

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

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

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

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

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

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

I can’t wait until I meet you.

Oh, these cuddles

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

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

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

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

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

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

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

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

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

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

… like pink or blue?

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

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

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

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

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

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

It’s a Mommy Thing.