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

Advertisements

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.

 

 

Zack’s got friends in low places

(‘Cause they’re all babies, yo. No redneck references here, I swear, although I’m sure many of their parents would be darned proud of the country song reference. Others are 100 percent mortified and will never let their babies play with The Dude.)

Zack’s social calendar is much more impressive than both of his parents’ put together and I’m sure it’s going to be like this at least through his mid-20s.

We have guy friends and lady friends, older friends and newer friends. We even have a birthday buddy and two friends with the same first name!

Through all of them, Momma and Daddy now have a dozen or so spectacular people in our lives, too. The babies share their drool and exclaim an “aghhh” or two now and then, but we parents raise our beers and talk about colors in diapers, nap schedules and pet peeves of the week.

Because of our location, it’s between 20 and 40 minutes to visit any of them or for them to visit us, but we all do it willingly, excitedly and lovingly, sometimes bringing gifts of coffee or much-needed pearls of wisdom. And did I mention the cute babies? And love, definitely love.

The funny thing is prior to six months ago, only one of these couple was SERIOUSLY in our lives on a regular basis and only another was a couple we would call acquaintances. Our babies have brought our crazy, fun group together, for better or worse, and the group just keeps on growing, too.

My Mom Friends are fantastic.(I love you all)

Some give me such hope and such great ideas — they just make parenting seem like the easiest thing in the world. They and others also share the darker secrets of motherhood — those times we moms need a time-out away from our babblin’ bebes, the scuffles with in-laws, the exciting ups (someone’s pregnant!) and the devastating downs (nothing gives strength quite like a sympathetic and/or ticked-off Momma) and the difficulty in being a working mom (we all are).

It’s not to discredit the dads, too, but really I don’t see them as much as the guys. When the two (or more) couples get together, it’s usually a quick segregation by gender. Scott tells me their talks are usually about power tools, golfing or some similar combination. Apparently Dads deal by talking about the stuff they can no longer talk about, haha. The manlier, the better.

And something has to be said about having a “playdate” with infants. I mean, the chances of both babies being awake at the same time is slim enough, although that gets easier as Zack gets older and is awake longer. But then to have them both with clean diapers and not hungry or cranky at the same time — that’s just one of those Super Mom moments where you feel like you have successfully climbed Mt. Everest — without a Sherpa. Oh, and you want to get a photo of the two together? Sure you do. Good luck. Arms are flailing, one baby is rolling, another has spit up coming out of his mouth and oh, look, just in time for the click of the shutter, here comes a meltdown!

But I snap away anyway, because I never want to forget these moments — these first friendship connections — connections that will hopefully last Zack a lifetime.

Let’s start with the ladies first, shall we?

Little Gabrielle “Bree” came into the world as a Christmas Eve present to her mommy, Meghan, and so many loved ones. I met her for the first time last week. Bree is so sweet and quiet and just a beautiful, beautiful girl. Meghan has already adapted so well to being a Mom, despite only being out of the gate for six weeks now. I’ve had six months and I’m just now starting to feel like I know a thing or two about my lil man.

I really enjoyed being teammates with Meghan eight years ago. (WOW. Old Moment, please hold. OK, it’s passing…) BUT I NEVER would have imagined that we’d be in touch all these years later, let alone living 20 minutes apart with babies born in the same year, talking about our favorite baby bottles and formula preferences. I have a feeling Meghan and I will be having a lot more playdates (and Momma dates, too!) in the future, too.

(And aside from Zack literally grabbing Bree’s pants with his one fist when we put them together on the floor for a photo-op, I’d say their friendship is off to a swell start.)

 

 

Zack was much more shy when it came to meeting Miss Hailey for the first time, perhaps because she’s an older woman. I’m not sure, but I do know that ever since that afternoon (far too long ago — ahem, calling for a get-together again, soon Hailey’s Mom!) Zack has perfected the “shy smile,” which he reserves almost exclusively for around women (or girls). It consists of a quiet giggle, a turn of the head and covering his smile up with both of his hands, all shy-like. It’s hysterical.

Hailey didn’t have much time for Z-man during their first encounter. I mean, first of all, she’s like three months older than him. At this stage of the game, she might as well be a cougar. She’s also far too busy crawling, and from the looks of things, trying to figure out that walking/standing thing. The girl is quick and I think she might just go straight to running and her Mommy and Daddy are going to be left in her trail of dust trying to keep up.

Hailey’s mom Krystal is another one who I probably never thought I’d be hanging out with — but it really, really works. We are both members in the My Mom Died Club, which is a really crappy club to belong to — unless you have someone else in the club with whom you can share your really crappy missing-mom moments. We’ve already messaged each other at random times just to let the other one know that that day was a little rough. It’s so nice to share that, because it really and truly is one of those things that I don’t think anyone outside of the club would understand. It’s amazing what bonds you together with people.

 

 

I have to give a quick shout-out here to another new lady friend of Zack’s who we haven’t had the privilege of meeting yet — Miss Madilyn. Madilyn is the naughty, naughty almost-three-month-old girl who gave her parents quite a fright by arriving WEEKS premature when they were home in Georgia for a baby shower around Thanksgiving.

She’s doing great now, though, and I know her parents — a dear, dear couple we met on our honeymoon in St. Lucia in 2009 — are so grateful for this new blessing in their lives. We share a wedding day, were part of each other’s memorable honeymoon and now have had our first babies born in the same year. This is a remarkable family and we only wish we didn’t live so far away from one another. (They live in Texas now). I can still remember that after only barely knowing the two of them for a matter of days, when we came across each other in one of the pool areas, the topic of when we were going to have babies came up… and I just can’t help but smile thinking how far we’ve come in that time.

[I stole this photo from Victoria’s Facebook and I will probably be in huge trouble for doing that, so everyone please tell them how absolutely adorable their baby is!]

 

 

And then there are the boyz. (They’re so cute and will all be up to SO much trouble someday that I just feel the need now to add the gangsta “z” to that word).

 

Another new addition to the group and the youngest of its members is Owen 2 (we know two Owens now), who perhaps we should refer to as Owen G.

Lil Owen G. was born Jan. 9 and is the handsome lil son of Scott’s old friend Mark and his wife Jodi. We went to Mark and Jodi’s wedding last year and there was so much love — and fun — in the air that I doubt you could find anyone who didn’t have a great time. I hung out with Jodi a time or two last summer, when my stomach was about four feet in front of me and the thermometer was broken because of the record-setting heat. We exchanged pregnancy stories (she was in the easy part by then!) and grew closer. I was checking Facebook like a maniac for baby updates from her early last month and was so excited to learn about lil Owen’s arrival.

If you’re a mom, don’t ask Jodi how long her labor/delivery is, because although she’s a sweet girl, her answer will probably tempt you into punching her.

And Owen’s little blue eyes (at least for now) are so sparkling and sweet, I could just stare at them forever. I met him for the first time the other day and oh my goodness, that Baby Fever hit me hard!

 

While we’re talking about Owens, I should mention Owen S., or our Owen 1. He was born two days after Zack (by induction, hmrph, another lady you might want to hit when talking about birth stories, haha!) and outweighed our dude by at least half-a-pound.

I share a LOT with Owen’s mommy Reva and I know Owen’s daddy Bret and Scott LOVE finding an excuse to leave us for an hour or so (usually it’s a trip to get dinner or something along those lines, but I can’t help but wonder if they try to take the long way home). Bret and Scott grew up together and were in a slew of sports with each other, but I don’t even think they had a close friendship like this until just recently. And while I’ve known Reva for several years and even went to her wedding a couple of years ago, we were never very close until our boys came into the picture. (While I hid from the temperatures last summer by basically sitting inside the air conditioner, Reva would call me up to see if I wanted to go to a state park or a local lake… or other things outdoors. I always declined and I hope she realized it had nothing to do with her and everything to do with my melting body).

Zack and Owen are hysterical together. On one visit, I swear to you, it was like they were having a conversation together, “goo”ing back and forth with pauses in between. And this weekend, Owen army-crawled his way OVER Zack, who was like totally in his way.

I love watching the two of them together.

 

 

 

 

David and his family are some of our newest friends. David is another naughty preemie who gave his parents quite the fright a couple of months before Z-Man was born, but we love him anyway.

I’ve known David’s mom for a few years through work. She’s one of the assistant DAs in the county I cover and she’s always been so kind and sweet to me, which is more appreciated once I watched her tear through some defendants in court cases. I’m glad I’m on her nice side! It’s funny because I never realized how much a premature baby requires extra care (like Early Intervention) and so much worry from his parents. Brandi and I have really bonded over that whole dont-have-the-baby-experience-I-was-expecting angle that’s been thrown at us in the last year. I think it’s definitely made us stronger, dont-mess-with-my-babies mommas. And better people, too. Her David is doing so great and after our last visit with them, I really kept saying to Scott just how unbelievably healthy and big he seemed. He’s come a long way and it looks like things are going so well for them now.

And in talking about David you can NOT forget about his big sister Lexie, who loves chasing our cats, (sort of) playing with our dog Izzie and her toys and being a big help, like offering toys to Z-Man and helping to set the table before dinner. She just turned three, so happy belated birthday to a great big sister and really funny girl!

 

 

And last but not least, our Birthday Buddy Chase. Zack and Chase, the news boys, first met in utero when their mommies, both news reporters (Angie works for the local TV station) were interviewing the now-Governor of PA, Tom Corbett. I can still recall the “whoa!” exclaimed by the candidate when he walked in the door and was greeted by the two of us, maybe two weeks from the lil fellas came into the world.

Then, after my two and a half days of labor, with all due respect, Angie is probably the last thought on my mind. I figured she had a few more days to go and maybe I’d hear about it on Facebook when I was home recuperating. Until I had Zack, had someone post the info on my Facebook wall and had a message within MINUTES from Angie saying our boys were born on the SAME DAY, less than half an hour apart (different hospitals). It was insane.

Naturally, we had to get the birthday buddies together immediately. That first visit from Angie and Chase (who has so much handsome, stylin’ dark hair it’s just groovy) was quickly followed by another one. And we try to get the boys together every month for the birthday photo together — and some catching up for the Mommies, too. I love this friendship, I love this friendship, I love this friendship.

 

 

 

 

 

 

 

 

 

 

 

 

So that about covers our littlest friends — for now. I’m sure there will be more in the coming weeks and months and years, but I don’t know if anything will touch this first group. These boys and girls whose birth stories I know as well as my son’s; whose doctor’s appointments and hospital visits and complications and worries are as frightening for me as it would be if Zack were in their place. They are soul friends, sharing a timeframe and a proximity in age and location, but whose births have brought my entire family a safety net, there to catch us when we fall. We will happily return the favor anytime.

We love you all. You make this crazy journey a little easier on the hard days and a lot more fun on the mediocre days. I’m excited to see what the future brings.