Ask away!

I try to show our life, our very normal life, if you will, through this blog, but I know that our day-to-day anecdotes can’t possibly cover all of your wonderings on the subject of Down Syndrome. I’m still learning myself.

So, in honor of World Down Syndrome Day on Friday, I’ll dedicate a post on Thursday to answering any questions submitted here, via e-mail (wrzook@gmail.com) or on Facebook.

Nothing is off limits. Nothing is too silly or easy or difficult or strange or insensitive or whatever. Don’t think, just go with your gut and ask it!

“The desire of knowledge, like the thirst of riches, increases ever with the acquisition of it.”

– Laurence Sterne.

You can still donate towards the National Down Syndrome Society HERE.

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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

Q&A with friend Nicole

My friend Nicole is visiting us this week. It’s a special week, not only because she’s here visiting and our home is all the better for having her spirit to share our world, but we will both be celebrating our birthdays on Tuesday.

 

Yes, that’s right, we share the same birthday, albeit in different years. (She’s the younger sister).

 

 

 

 

 

Nicole and I have known each other for nearly six years, as she explains below. Our friendship began in a foreign country in what seems now like a totally different lifetime ago for both of us. She was the Maid of Honor for my wedding in 2009 — and that was only the 10th time we had ever seen each other in person. This visit brings us up to 13 times together.

 

 

 

 

 

 

A summer abroad. A bridal shower/bachelorette weekend. A wedding celebration. A baby shower and visit. A few trips to Massachusetts by me. Many visits to PA by Nicole.

 

 

 

 

 

 

Everything, every visit is an adventure of some sorts. And it usually involves a dangerous game of Truth or Truth and a pensive gaze over the waterfalls, across the city or over the covered bridge — or whatever scenery we’ve surrounded ourselves with this time.

 

 

 

 

 

 

 

 

 

 

We call each other ‘gemelas’, which means twins in Spanish, the first passion we shared together. Nicole is in real life a twin, and I hope her sister doesn’t mind much my being Nicole’s spanish twin.

 

 

 

 

 

Life is crazy. The journey is sometimes bizarre. You always need a traveling partner.

And now, I present, mi gemela…

 

Explain how you and Wendy met:

Wendy and I met 5 1/2 years ago in Buenos Aires, Argentina. We were studying abroad at the young, innocent ages of 20 and 21 when we thought we knew everything, but in fact we knew nothing at all. I still can’t quite figure out what it was that bonded us, but that summer I traveled halfway across the globe to find my best friend and my “gemela.” Looking back at my travel journal I kept that summer, I smile to see that only seven days into meeting Wendy, we both already knew that we had found our soul sister. It must’ve been the dulce de leche! That stuff was better than wine!

 

What were your first impressions of Wendy? Were they accurate? How has W changed since then?

I remember thinking that Wendy was one of the strongest and most fascinating persons that I had met…. and that still holds true. That girl has faced more challenges in her life than most people, but she has magically turned them all into stepping stones bringing her to where she is today.

 

What was your first impression of Scott? Has that changed?

 

Right off the bat, Scott struck me as a fun person to be with. I remember some silly pictures taken during a car ride through a snowy Boston suburb, a crazy visit to the Jersey Shore that involved moose antlers, and just a lot of laughter and comfortableness around him right from the beginning. Clearly that was part of what attracted Wendy to him. I could see right away that he made Wendy so happy. She just has this contented smile on her face when she is with him.

 

 

 

What was your reaction to finding out we were having a baby? To us having the baby? To hearing he had Down Syndrome?

Having a baby – I shrieked! I was so excited for Wendy and Scott. It took me a few days to fully process that they were going to have a BABY, but their news made me float on air for a few days, I was so happy for them both and was dying to see them in action as parents! Hearing he had DS – I’ll be honest: at first I was stunned. There was this sharp intake of breath, the pit of my stomach just dropping out, and a good half hour of sitting there in the middle of the night, staring at the message on my computer in shock. And then shock gave way to reason and other emotions came into it, and I realized that already Zachary was such a lucky little man to have come into YOUR lives. He couldn’t have asked for better parents. And now every day that passes, I cannot agree more that he has helped to make you who you are, and that you are taking these impressive and powerful strides to help others and bring a voice to the cause.

 

 

 

What makes us good parents?

Love. Pure and simple.

 

Everyone thinks twins have a secret sense between them, sharing pain and feelings and all that. Do you think it’s true? What about gemelas? 🙂

How do you share a belly laugh with someone who is 497 miles away? Gemelas, that’s how. Wendy and I are soul sisters, have been for 5 years, and always will be. We may be separated by physical distance, and we may be at different stages of our lives, but that connection is still there. There have been so many moments when I’ve wanted to just beat that distance to the ground, travel across the phone lines, and be there with my gemela for a hug, a kind word, a shared belly laugh, or just a knowing look. But distance doesn’t get in the way of that, because we are still just as much gemelas now as we were wandering the streets of Buenos Aires together. Gemelas para siempre.

 

What is the best/most fascinating moment of your life so far? If you could plan out your future best moment, what would you wish it to be?

You mean I have to choose just one???? Everyone that knows me knows that I look for the little moments that mean so much to me, and I savor them. When I travel, I don’t come back telling you about my favorite place. Nope. It’s all about my favorite moments. So in my day-to-day life, it’s all those little moments that add up to make me who I am. Moments at a kitchen table with the sun streaming through the window, on a front stoop in a little garden-filled alleyway of Boston, walking across my family’s farm with my boots trekking through the fields and the mud, snapping photos of my favorite places, looking in wonder at my students’ upturned and smiling faces, a familiar and comforting voice coming through the phone lines…. THOSE are the most fascinating moments of my life. As for the ones to come? I would hope that my best future moments would be a small moments with loved ones, a simple act or word that will carry so much joy and strength that it will be with me para siempre.

 

 

 

What advice/words of wisdom are you dying to share with Zack?

This is Nicole’s great answer.

 


Q&A with our friend (and new mom!) Jodi

Another beautiful baby has come into this world! Little Owen G. was born Sunday, Jan. 9. He weighed 7 pounds, 12 ounces, and was 20 inches long. Mom Jodi and Dad Mark are doing great, too! I was saving my Q&A with my friend Jodi until she became a Mommy, so without further ado…

How do you know Wendy and Scott?
I know Wendy and Scott through my husband. Mark and Scott went to high school together. I met Wendy at a wedding reception about 2 years ago about 3 months before their wedding.

[Blogger’s note: I remember very little about said reception other than catching the bouquet and embarrassing my husband-to-be immensely and having an absolute blast with Jodi and other friends]


When are you due? What are you having? Have any names?
Our baby boy is due January 18th, but we are hoping he comes a little early : ) Picking out a name was easy, and we picked it out quite early in the pregnancy. We wanted a short name like ours and came upon Owen. The name stuck with us and we have grown to love the name.

How has your pregnancy been so far? Highs? Lows? How is it different from what you expected?
Our pregnancy was quite a surprise, but we are happy nonetheless. It has been a wonderful pregnancy and I cannot complain about anything. I did not have morning sickness or any kind of problem throughout the entire pregnancy. I am now two days shy of 36 weeks and feel great! Slight tiredness has set in, but I will continue teaching up until he comes.

How do you think you will be as a mom? How will your hubby be as a dad?
I have to admit, being a mom makes me nervous. It is completely different when it comes to your own children. Our baby will have two very loving parents who will want to do the best and whatever it takes. I know Mark will be a wonderful father. He is caring, fun loving and patient. We will learn a lot from each other and work together to raise a happy baby.

What are you most fearful of/worried about with the labor/delivery? With the first few months?
I am terrified of labor and delivery. I fear the unknown, and that anything can change at the blink of an eye. I want to have a natural birth, but whatever is safer for the baby. I am going to the hospital with an open mind about an epidural or pain medication. I will see how it goes when I am there and do what I feel is better. As for the first months, I am afraid mostly of not knowing how to calm our baby down if he is crying. They say a mother just “knows”, but what if I don’t? I want to believe I will know, but then again, I may not know.

What are you most excited about?
I am most excited about seeing my husband with our son. I feel it is going to be such an amazing time. I am excited to see who he looks like most and just being a family of three.

If you could get a truthful answer about ANY pregnancy/delivery/Mommy-related question, what would you want to know?
There are so many questions!! I want to know how long it is going to take me to heal and will I feel the same as I did before I was pregnant? I’m sure there are more, and I will definitely be asking you for advice. You are such a strong wonderful mom and I hope to have the strength that you do. : )

*Photos are courtesy of Jodi’s Facebook updates. I was given no permission from Jodi, but seriously, I doubt I’d EVER get permission from any new mom to share these photos. I promise to make up for it by baby-sitting and loving that little boy and making sure Zack is a good influence. 🙂

 

Welcome to the world, Little Owen. May your dreams be huge — and reachable. May your parents get lots of sleep and keep their patience. And may you make your mark in the world, little guy. You can always come to “Aunt” Wendy and “Uncle” Scott’s house if you need to get away from your mean parents! (haha!)

Q & A… with friend Meghan

Hello and happy weekend!

Guess who’s going to be a Momma ANY.DAY.NOW?! My college friend and former Cross Country teammate Meghan’s due date is today. I’m not even sure if she’s had the baby yet… her Facebook page is quiet and I haven’t gotten any messages yet… so here’s hoping for a safe and easy delivery of her baby girl really soon!

Despite growing up in two different states, we two ladies graduated college and went on with our lives and careers and loves… and wound up living 20 minutes away from each other now and bumping into each other every now and then for work. It’s a crazy, small ole world.

I introduce to you, Miss Meghan, who will be a fabulous mother…

<— (Meghan and I are sitting next to each other in this photo, taken before a championships race for college Cross Country in 2005).

 

 


<— (Meghan and I in XC in 2005 with teammate Daisy in the middle)

How do you know Wendy?

MEGHAN: Wendy & I were XC/College buddies and somehow Wendy ended up in my hometown area after college (God what were you thinking 🙂 ). We reconnected after my GM ‘spilled the beans’ and said I was pregnant after I told him not to!!!

Blogger’s note: I was covering a story at the resort Meghan works at when I was about five or six months pregnant. The General Manager hadn’t seen me while I was pregnant yet and started telling me this “funny story” about a catering manager who was pregnant before I could tell him I had an idea of who he was talking about…

 

When is your due date? What are you having? Any names chosen yet?

Due Date = 12/17/2010; we’re having a little girl (my poor husband) and we haven’t been able to settle on a first name yet!! We’re between Samantha, Cassidy and Sidney. Her middle name will be Marie in honor of my late grandmother whom I was very close to. She passed away my Junior year of High School.

How was your pregnancy?

Pregnancy was a SURPRISE!!! I didn’t even find out until I was 13 weeks!! I was sick as a dog until about 17 weeks (you would have thought I’d figure it out with that, but I was in denial and also planning my wedding so I attributed it to stress). From weeks 17 to  35 I felt GREAT!!! Still super active, didn’t gain a ton of weight…I’m a wedding planner and I was still able to put in my 15-hour Saturdays and come home and be okay!! Then, at 35 weeks I went into pre-term labor contractions and had to be put on medicine for roughly 10 days…I’m now at 39 weeks and it’s starting to hit me, but all in all…I’ve been pretty darn lucky!!

 

What are you most worried or nervous about with the delivery/labor? What about those first few months with baby?

I am afraid that something will go wrong during labor. I’m also afraid that I will run out of steam part way through and not be able to push enough to finish everything. I’m still up in the air about an epidural because I figure that…up until this point, I’ve endured discomfort for 9 months, why not see if I can just finish it off the old fashioned way! As far as the first few months…I’m terrified of EVERYHING!!! I’ve never really held or been around tiny babies (neither has Matt) – I’m still flabbergasted at the fact that these doctors are going to allow me to leave the hospital with this little creature…I’ll probably feel like I’m stealing something…like “are you really sure you’re letting me take this home?”

 

What are you most excited about?

I’m very excited to finally meet her – I’m adopted so my daughter will be the only blood relative I have in my life and that’s a pretty cool thing. I can’t wait to see what she looks like & then also see her personality develop: who will she be like? Will she be a math lady like her dad or a planner like her momma?

 

What nitty-gritty information do you really wish you knew?

I would want to know all the horrific gross stuff that happens AFTER you have the baby: no one really gets into it with you about the bleeding, your nipples feeling like they’re falling off, not being able to hold your pee like a normal human being…like, give it to me straight. Everyone kind of glosses over stuff (even in the classes)…tell me if I’m going to have to sleep on a puppy pee pad for 6 weeks after the fact because I’m leaking all kinds of nonesense!!!!

 

What kind of mom do you think you’ll be? How do you think Matt will be as a father?

I think I will be a basketcase as a mom. Hopefully I’ll do a great job and teach my daughter to be a strong and independent young lady that has LOTS of confidence. I also think that I will have way too much fun ‘dressing her up’ and will encourage a dangerous shopping habit from an early age (much to her father’s dismay). Matt is going to be an AMAZING father…honestly, until Matt, I never even wanted children. He is the whole reason that I ever entertained the thought: he is the kindest, most amazing person I’ve ever met and I can’t wait to see him hold her when she’s first born. I mean, c’mon…what is sexier than your husband holding a baby!!!?

 

Best wishes and lots of get-a-lot-of-sleep happy thoughts to Meghan and Matt!

Q&A… with “Aunt” Jeannine

Happy Friday! It’s time for another question-and-answer post, this time with Zack’s honorary aunt, Jeannine.

She’s known as Jeans to me and she’s been one of those people. You know the kind, or at least I hope you find the kind.

We’ve known each other about 10 years, from an instant click our sophomore year of high school when we began to cause more trouble than our parents ever want to know.

I never thought it was possible to have so many hilarious inside jokes with somebody. Jokes that hold up a decade later.

Beyond her gorgeous grin and thoughtful character, Jeans has saved my life. A lot of you are probably shaking your head at such a crazy statement, but please trust me, it’s true. I repeat it to myself every time I see her. Jeannine saved my life.

I love the text messages I get from Jeannine, even if it’s not for days later thanks to our fantastic cell service out here in the country. I get ‘life update’ e-mails from her and despite our ups and downs these last few years, she’s taught me the importance of aging well, and the need to do that growing up with somebody you love.

They say
“I’m so glad that you finally made it here, You thought nobody cared, but I did, I could tell,”
And “This is your year,” and “It always starts here,”And oh-oh oh-oh-oh oh-oh, “You’re aging well.”

 

I’m smitten with the way that Jeannine looks at my son and I know that he will be lucky to have such a fantastic woman in his life.

 

 

 

And don’t get me started on her wonderful man, Jeff.

You know how some people just bring out the best in each other, make the whole world so stinkin’ happy just by their presence together as a couple? Yep, that’s Jeans and Jeff.

 

 

 

Enough! I present without further ado, the one, the only… Ms. Jeannine.

 

– How do you know Wendy and Scott?
I’ve known Wendy since high school, and I was able to meet Scott not too long before they got married.
– What’s your first memory with Wendy? What’s one of your favorite memories with Wendy?
Haha! Being in Mrs. Niper’s English class.  We were supposed to be working on a collage about a novel we had read as a class…but instead we were looking around the window and laughing and generally having way too much fun.
– Explain the importance of veggies.
Well it turns out that good friends make for a good life – and vegetables are good for the soul!  So eat your greens and don’t be stingy with the laughs 😉
– If you and Jeff could corrupt Zack for one day, what would you teach him?

I would definitely dye that mohawk if I could!  And I’m sure that Jeff would have him rocking out to that crazy rock n’ roll those darn kids are listening to these days.
But  real…what is the fun of being the cool aunt if I report back to his mom on everything??

– What makes Wendy and Scott a good couple?
They treat each other with respect – and that goes a long way and covers a lot of ground.
– Zack loves his new red hat. He wants to know how you came up with the design/idea and how  long it t ook you to make.
Haha!  I’m glad he likes it – it was fun to make.  I saw the pattern for the beanie in a book (just two half circles, nothing fancy) when I was in Barnes and Noble, but I didn’t really think to put it to use until one night when I started to freak out over my thesis and needed something hands-on to do. I had the spare red fabric from a sweater, and added the Z (which used to be trim on another garment), b/c I had this very blog on my mind 🙂  It took an hour or so, and reminded me that while I’m proud of myself for sticking it out in grad school, I’m happiest being creative and making things for people I love – so thank you, Zack, for a wake-up call that I really, really needed.
– 5 or 10 years ago, did you think we’d be here? (you can define here)
Here: “Doing the right things at the right time, in the best way we know how”  (how is that for a definition?)  I think its one of those things where you get so caught up in life, or I do at least, that you don’t notice that you’re “here” or “there” until one day you look around and say to yourself, you know, we’re aging well.

– Truth or Truth: A movie about your life is going to be made. What is the name of the film? What’s the main soundtrack song from the best scene? What actress is playing you? What one quote from our friendship MUST be included in the movie?
WELL. Wendy is a cheater b/c this question has been asked in this game about a million times!  😛

You know, lets call it “Here, in Progress” – and I think Meryl Streep or Helen Mirren should play us! I think the soundtrack should be a mix of Madonna songs, the Sound of Music, everything from Beaches, some Springsteen and also some ABBA – and we sing all of them.

I would love to give your readers a preview of some of the quotes from this movie, but none of ’em are fit to print 😉

Q&A… with Zack’s Grandma

Zack’s parents are not the only swell people in the Mohawked One’s life. I thought a fun feature of the blog could be a sort of Q&A with our loved ones. It is my intention for you (and me!) to see our world from a different point of view in ways that can be thought-provoking, entertaining and interesting all at once.

Our first victim, er, spotlight will be with Scott’s mother, Debbie, my mother-in-law and Zack’s paternal grandmother and full-time babysitter.

[Interview done during the baby’s feeding earlier this week]

What were your first thoughts and emotions when told that Wendy was pregnant? Did you have a hunch ahead of time?

Debbie: Excitement. Happiness. Sheer joy which I still feel.

I knew. On Christmas Day, I offered Wendy some coffee and Scott clearly said, “My wife won’t be having any.” It was given away. I didn’t say a word to anyone.

[Blogger’s note: Wendy and Scott found out they were pregnant in early December 2009, but didn’t tell Scott’s parents or most other people until a month or two later.]

What was the best part of our pregnancy journey for you?

D: Watching you guys grow, not just physically. [Laughs] It’s really neat to watch somebody else go through the experience. It was a good time. A very good nine months.

Did you honestly have a preference on the baby’s gender?

D: Absolutely not. We love babies. We didn’t care.

How was the official “labor day” for you?

D: I didn’t put the phone down. I carried one cordless phone around until the battery went dead. Then I carried the other one around with me.

[Blogger’s note: We stopped at Debbie and Calvin’s house on our way to the hospital for the third day of contractions. We thought we’d be discharged again and would see Debbie for lunch. We called her an hour later and told her today was the day. And then we left her hanging for nearly six hours.]

What was your reaction when you found out I had to have a C-section?

D: That was scary. The doctors know what they were doing.

What was that momen t like when you first saw the baby?

D: I didn’t cry right away. [She said as she started to well up.] There’s just no words. [Debbie started wiping tears] I loved him from the moment I laid eyes on him. It’s unconditional love.

And what about when you were told he had Down Syndrome? [Blogger’s note: We were told it was a possibility by the pediatrician at the hospital Monday after Zack’s birth. Zack’s discharge was delayed Tuesday until we could line up an appointment with a pediatric cardiologist. We didn’t tell anyone about the pediatrician’s hunch about DS until we told Scott’s parents Wednesday after that appointment. We found out for sure when test results were called to us Saturday.]

D: Sunday, right when I saw him, he opened his eyes and looked at me and I knew. Tuesday, when you were not discharged, I completely fell apart. I told Calvin the baby had Down Syndrome. Wednesday was one of the hardest times we’ve ever had together. Right now, I wouldn’t trade him for the world. It was so scary at first because we didn’t know that little person yet. He’s not that baby with Down Syndrome. He’s our grandson. He’s a healthy baby boy and he’s doing great. He’s just such a joy.

How would you describe Zack’s personality?

D: I think he’s precious. He’s very mellow. The best times are sometimes when you’re changing him and his eyes are looking and you and he’ll just watch you until he makes a noise. Then he’ll smile. Having little conversations with him are really special to me. I love letting him talk to me.

How would you describe Scott and me as parents?

D: I’m so proud of my kids and the parents you’ve become. You were parents before you even had Zack. You thought like parents do. It’s very natural for both of you. I think you’ve been very comfortable with him since Day One.

How is being a grandparent different from being a parent?

D: I think we’re in a different place in our lives. It’s hard being a parent, working, taking care of the house, putting food on the table and taking care of the baby. We’ve been there, done that. It’s not easy.

We’re looking forward to him growing up and getting older and playing ball, things like that. Grandparents come and play and then they leave. Get ’em good and dirty and high on sugar and then give them back. [Laughs mischievously.] I love every minute of it.

[Blogger’s note: I think we’re in trouble… :-)]