Dear Momma (A letter from the kids)

Dear Momma,

Zack and Addie here. We thought you might need us to remind you that you’re doing a great job.

We’re pretty young but we definitely know a few things.

We know you’re too hard on yourself. We know there are a hundred moments every day where you wonder if you’re just doing alright. We know sometimes you crave a moment by yourself, with a good song and sunshine on your face. And there are other moments you feel like you’re the only adult in the world; the loneliness sneaks up on you and digs firm roots in your heart like the viney weed in the dirt.

Momma, you’re doing more than just alright.

We certainly don’t make it easy on you.

There’s no telling when we will take advantage of you standing over the dinner on the stove to dump the cat food bowls onto the floor. Or when your bladder needs to be relieved in the worst of ways and we choose those 90 seconds to grab a cell phone, checkbook, wireless mouse and remote control off of the desk, but not before we enter some Japanese food store into the search bar of the Internet.

We see the hand smack on the face when you’ve just put clean cushions on the couch and we crunch a slobbery goldfish on it, all while holding up our now empty bowl asking for more crackers as crumbs crash on the floor.

We see the way you come up the stairs for bedtime some nights, moving so slowly, holding your back from bending over weeds during nap time and carrying four clean loads of laundry upstairs after our impromptu dance party in the living room. You still pick us up and sing to us and squeeze us as tightly as you can, but we bet you go downstairs and fight back tears from the pain.

You think sometimes you can’t handle two kids alone — how the simplest tasks like groceries or mailing a package become insane. How one of us is running up the hill on the driveway while the other one screams in their carseat, kicking wires out of the DVD player as you glance at the clock because, again, we are running late. But then some days, Mom, you watch us and our bestie Aubrey and you’re a pro. We all feel equally loved.

We know this is still a transition for you. You’ve gone from business suits and time clocks to jeans and diarrhea diapers. You don’t know if you’re even appreciated some days, or if every one of your friends even remembers your phone number anymore.  There are no bonuses or holiday presents for your new job.

Speaking of jobs. Your kicking some butt balancing Mary Kay and your photography business in all of that free time we give you. You know, the 20 minutes we aren’t fighting or crying or asking for more freakin’ CRACKERS.

Or at nap time when all you really want to do is put up your feet and watch a Hepburn movie. Sometimes from your phone in bed while Da-da is snoring and you can barely keep your eyes open.

You quit your anti-depressant a month ago. You held us both in your arms that afternoon and said you were scared of the lows but wanted to feel the joy we brought you stronger than ever before. You hated the numbness, missed the way that excitement and laughter could fill up your belly, fly up your throat and come out in happy tears and silly giggles. You wanted to feel, you told us. You prayed for you and prayed for us and we petted  your hair which made you so happy.

We saw you the other day. The way you appreciated us listening and behaving so that we could all spend hour after hour of uninterrupted bliss outside in the sunshine on a beautiful Spring day. You stopped as Zack held a leaf and ran it along the edge of a wall telling a story with words like “people” and “go” and “walk” and “outside” and Addie colored a chalk picture on the sidewalk, looking up at you with pink smeared across her cheek and a spot of blue on her hand. “Everything has come alive,” you said softly. You wiped away a tear and the dirt from your gardening glove smeared by your eye and we laughed. “You’re both so smart, so happy, so big, so full of life,” you added, talking more to the ivy on the sidewalk than anything else. We saw you that day, Momma.

 

You’re doing a great job, Momma. But here’s a few requests:

- Stop sweeping the floor so much. Wait until we’re asleep. Or we’ve moved out. Either option is safer and less frustrating.

- Way to go with the homemade laundry detergent and other housewife adventures you’re trying. And remember, you haven’t burnt down the house yet and we’ve had three meals every day.

- Don’t be so hard on yourself. About us or about yourself. You’re a good mom and you’re a great person.

- Pick your battles. Addie loves “washing hands” in the bathroom. It’s annoying but she can’t drown. Good hygiene is a nice habit to get into, too. So what if her sleeves get wet. Pick your battles.

- Keep taking risks. Create spontaneous memories for yourself. You’ll create beautiful memories for us, too.

 

By the way, we know you’re hiding the cinnamon jellybeans somewhere. We will find them.

Oh, and we’d like more crackers, please.

 

Seriously, you’re a pretty great Momma.

We love you.

Zack & Addie

 

 

 

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Knowing him has… (World Down Syndrome Day)

I very often share our world here; how DS plays a role in it and how Zack and his sister shape it in so many different ways.

But today is World Down Syndrome Day and our little Zack Attack, 3 1/2 years old now, doesn’t just change the ways his mother and father think; he doesn’t only make his sister Addie smile. No, our boy has touched many lives and warmed many hearts.

After Zack was born, I promised myself, hands clenched in fists alone in a hospital room, my son cooing in his bassinet nearby, that I would spend every day of my entire life opening doors for him.

Yet, as evidenced by the outpouring of love shared below, Zack is the one opening doors. And eyes. And minds.

Zack is the one making a difference.

Please consider a donation in Zack’s honor to the National Down Syndrome Society HERE.

 

 

 

Wendy’s mother-in-law Debbie:

Zack’s diagnosis was devastating! No way around it! Broke our hearts and broke our hearts to watch Scott and Wendy trying to be so strong. They were strong because Zack needed them to be. This precious child was placed in their arms and he was their son, no matter what, for now and forever. Through her research, Wendy learned everything she could about Down Syndrome and connected with other moms of DS children. She also started blogging to allow her to share her feelings and work through the roller coaster ride of emotions.
One of the most amazing things that has come from this experience is that we have gotten to know so many wonderful people. First it was the Early Intervention therapists, who came to the house and worked with Zack but also let us share our thoughts and concerns. They were amaziing and became like extended family. Their care and affection for Zack was evident as his face would light up when they came to the door. Now he’s in preschool a couple days a week. His teachers and the other children have taken him in with open arms and support and encourage him. Through the local IU8 program, Zack is getting continuing therapeutic exercises as well as speech therapy. The atmosphere at both locations is one that teaches respect, kindness, patience and understanding. We are so fortunate that Zack is in such caring environments.
Zack is amazing! He has come so far in the past 3 1/2 years. Have I mentoned that he’s absolutely beautiful? From the angelic face with blue eyes and blond hair lost in concentration as he’s reading a book or watching TV; to the mile wide smile and laughing eyes that greet me at the door with a shout of “Gammaw” as he runs to wrap his arms around my legs. Moments I will treasure forever.
But Zack’s just getting started; he has the whole world in front of him. He will learn and grown and be whoever he wants to be. I have no doubt about it. He will thrive because he will always have his family behind him to pick him up when he needs picked up; to push him when he needs to be pushed and to encourage him every day of his life.
Wendy’s friend Krystal:
I remember when I heard that Zack was diagnosed with Down Syndrome feeling my gut sink to the floor. I couldn’t believe it. I remember feeling a sense of guilt for the rest of us having healthy children and then I stopped and thought about what the Zooks had to be feeling. Becoming a first time parent is tough enough emotionally and physically let alone hearing anyone say that there is something wrong with your child. Without Zack being born I don’t know that I would have the relationship I do with his mommy today. I feel we bonded over Zack and other things we have way to in common. We grieved together whether we realized it at that time or not. I was hesitant to talk about Down Syndrome with Wendy at first. I never wanted to make it all about Down Syndrome because it was about the blonde mohawk blue eyed boy that we all love, but I didn’t want to ignore Down Syndrome either. It was now part of their life. I was scared for Wendy, Scott, and Zack. Parenting is unknown territory. We all try to prepare ourselves however it is usually a day to day fly by the seat of our pants rollercoaster. When you are pregnant we daydream of what the days will be like as our children grow. All of these hopes and dreams we have for children. I see your family as motivators, advocates, loving, kind teachers. Zach is such an inspirational little man. He is a loving, adventurous, mischievous, curious little man and I have all the faith in this would you as a family will give him every opportunity to him to be independent. He has taught us all to appreciate each day and brings a smile to my face each time I see him. I think of the lessons he will teach all of our children. The way society is today I know there will be struggles and bullies; however I know he will have a strong support system and I hope my children are standing beside him to stand up for him and cheer him on every step of the way!
Wendy’s OB/GYN nurse/friend Jennifer:
Wendy, I have been trying to think for days of what I would like to say about Zack. Not that I know this little boy as well as most people do but I think I could say I had a personal interest in the care of Mommy while she carried this lovely little man that we all get to see today & are bless with. Like some when I first saw Zack I had no idea that he had Downs, maybe be cause I could not get past that wonderful smile, those eyes, and of course Wendy you know, when he reached out for me to hold him “WELL” OMG The boy might as well & he did that very day took a piece of my heart and has had it ever since. And I think his mom knows this because now she uses this lame excuse of him being in school for me NOT to be able to see him!!!! LOL I love you guys & was BLESSED the day you came to see me.

Wendy’s sister Shelby: I spent the weekend with him and it wasn’t until I saw a post about him having Down Syndrome a few weeks later and asked (brother) Shamus if he knew and he said yes. I never thought that he was anything more than my mohawk man.

Charity, Zack’s Occupational Therapist/Wendy’s friend: Oh what to say about Zack! When I first met Zack he was a happy little boy who was having some trouble with solid foods. He had a hard time biting off pieces and chewing and Scott and Wendy wanted him to be able to eat with them. With a little practice and patience Zack was chowing down on his goldfish, jello cups, crackers, and cheesies in no time! Zack amazed me every week I saw him. I would come in to see him for OT and he would be doing something new or would have learned a new trick. He quickly learned how to feed himself with a spoon (of which I think the most fun was practicing in the bean bin and Zack throwing them all over the living room!). I was so excited for him when he learned to use a spoon and fork all by himself. Soon he was drinking out of a straw cup. Although this wasn’t my “area”, I also remember Zack saying some of his first words, like “ball” and Zack learning to walk and climb the steps…and although he has down syndrome he did ALL of this in only a short year and half that I was able to see him. When I ran into Zack recently at his new school, I was AMAZED at how well he interacts with the kids, completes his school tasks, and most of all I was sooo proud when he sat up to the table and fed himself his lunch and drank from an open cup with no problem! Zack is such an amazing little man and I sure do miss seeing those smiles every week and watching him torment those cats at your house! Zack has such a bright future and you and Scott and his grandparents and everyone else in his life had made and will continue to make Zack a great little man! I can’t wait to see what the future has in store for Zack!

 

Wendy’s cousin Andy: I really don’t think of Zack having Down Syndrome…to me he’s just a cute adorable kid..he can at least figure out a smart phone which is more than I can do now!

 

Wendy’s friend Reva: I think back on being pregnant along with you and the expectations we both had of motherhood and that always takes me to the day we brought Owen home which was the first time we had heard about zacks diagnosis. I remember just sitting on the bed holding my newborn baby and I just bawled my eyes out. I cried out of fear, cried for Zack, cried for Owen, but mostly i was so upset for you Wendy. I cried because I realized that everything we couldn’t wait for with our boys would be changed for you completely. It took me actually sitting down and researching Down syndrome and it took talking with you and it took holding and bonding with Zack for me to realize that Down syndrome was not this big scary end to a perfect boys life but that it was something so amazing and so wonderful and something to celebrate every day. We have watched how in nearly 4 years Zack has become this beacon of light for your family and the most inspiring thing about it all is that through every one of zacks milestones big and small your entire network of family and friends celebrate with him. Our kids play together and will grow up together and will always have their Own little support network. We all know he is going to do great things with his life and I know I personally can’t wait to be able to say I changed that kids diapers lol! I watched him grow and I was there when he learned To crawl and walk. I’m so thankful to have Zack in my life because he reminds me everyday to celebrate this life I have no matter what.

 

Wendy’s friend Drew: As having a sister with mental disabilities myself, I just never thought as Zack as any different.  My favorite moment was walking up to aunt alice’s front door and watching alice and zack dancing

 

Zack’s Sensory Therapist Kristan:I think Z is awesome. I am just starting to get to know him but he is super smart and is going to do very well in school. His personality cracks me up. My favorite is when he sings into his toy microphone (whatever he can find to resemble) and bobs his head while making up his own tunes.

 

Wendy’s friend Allison: I had never known anyone who had Down Syndrome before Zack. I didn’t know anything about it, but that the kids who had it were “different.” As I grew up and learned more, I discovered the value of seeking information and now can appreciate just how “different” these folks are. They are kind in a world of ugliness, generous in a time of selfish entitlement, loving and affectionate to people they barely know and can put a smile on the faces of a million strangers (which you know is true if you’ve ever seen a FaceBook post from the Down Syndrome page.) I believe there are a lot of things to learn from kiddos like Zack…patience, persistence, and shear, unadulterated happiness. He’s a special guy for a lot of reasons and I feel blessed to know him and his family the way that I do!

 

Wendy’s cousin Melaney: I actually do think of Zack as having Down Syndrome and how knowing him has expanded my awareness; my awareness about DS and the unique strengths and struggles of children and adults living with it. Zack is also a sweetie who is just as cute and lovable as can be who I am lucky enough to have in my family.

 

Wendy’s friend Lindsay: Zack is the first child with Down Syndrome that I’ve had the opportunity to know on a personal level.  The way he smiles, his eagerness to know and learn about the world, and the way he loves his sister and pets are just a few of the things that showcase his sparkling personality and huge heart. Looking at Zack is like looking in the mirror at the pureness and goodness we were all born with. He’s a beautiful child with a beautiful soul and it’s been amazing to watch him grow, thrive, and tackle new challenges!

 

Wendy’s “uncle” (B)rick: This is a little easier for me to answer because of having my own special needs child. When a special needs child is born to a family who really has never experienced such a situation there is a fear that looms over everyone. Basically, it is a fear of the unknown. Everyone does not know what to expect. The fear can be crippling in some aspects,more so to relatives than to the mother and father. A mother and father while experiencing the initial trauma of the unexpected, sooner rather than later, adjust to the fact that in the game of life, they have been dealt a wild card. Parents, while being overwhelmed with there fear, adapt as they begin to reap the unique love that a special needs child gives on to them.

The relatives, however, need to be guided through there fears. The parents need to expose there child to the families and show the bravest of faces. We can only hope that our relatives are brave enough to face the unknown.

These children really have no concept of their uniqueness. They go forward through life with the loving encouragement of all who surround them.

My daughter, being so severely challenge, has been the most difficult of experiences. My family, while they tried, have never truly adjusted to the situation. This is honestly justifiable due to difficulty they experience in trying to communicate with Chris.

As you know through your own original fear and experiences, the dread is quickly dissipated as you show love to your child and he in turn begins to return your love. You will always run into people who are unable, or unwilling to deal with such situation. You can only drive onward with life and do the best you can with the card you have been dealt. Never assume that Zack can’t do anything. Children have a way of surprising us.

 

Wendy’s friend Nicole: I’ll always remember the night I learned that Zack was born with Down syndrome.  Two little words seemed to bring our worlds crashing to a halt, bringing us to a scary unknown.  For a little while, those were the first two words that bubbled up to the surface when I thought about Zack.  The words were as foreign to me as they were to his parents, and they and their family and friends grappled with this new reality.

But you know what?  It’s been three and a half years and those two words are just that:  two little words.  They in no way define that amazing little boy.  Now, what I remember the most when I think of that little boy that lives 500 miles away from me is his infectious laugh.  He has this bubbly laugh that builds up as he gets going, and it’s so joyful and contagious that you can’t help but burst out laughing yourself when you hear it.  And now his sister has the same laugh.  I remember how Zack always grabs the iPad when his mama and I skype, and how he’ll march it around the house.  I’ve gotten some really good tours of their ceilings, as well as some slobbery internet kisses that way!  I think of his soft blond hair, the kind way he has with the cats, how much he loves to settle in and read in his special little chair.  I think of the mischief maker and all the little messes that he gets himself into as he’s exploring his world.  I don’t think of DS.  It’s there, but it’s under the surface.  That’s what he and his family have taught me over these past few years.  They’ve opened the door to this whole new world of acceptance, of inclusion.
This year I’m thrilled to have a student with DS in my regular education classroom.  I get to work with her every single day, and I see amazing advances in her and in the other students as they learn to work together with their friend and accept all differences, big and small.  Those two little words are just that, now:  two little words.  Nothing more, nothing less.  They’re there, but they’re not all that is there.  They no longer define Zack, nor do they define my student.  These are just a few lovable kids with almond eyes and big dreams.  Let’s remember that.  :o)
Wendy’s aunt/Godmother Alice:
I’m ashamed to admit that when Zachary was born I was disappointed to learn that he wasn’t going to be a “normal” child but he proved me so wrong. Who are we or rather, who am I to say what is normal? When I held him in my arms for the first time I realized I was in love with him; my third great-nephew, my late sister’s grandson.  Zachary makes me laugh, fills me with love, and is the greatest joy that I never knew could happen. This little boy with the extra chromosome is such a smart boy, such a happy boy, such a loving boy and we are all better for it and so blessed. I hope he can forgive me for my initial reaction for he is incredible and will prove that he can do anything.
Wendy’s cousin Laura:
I remember how happy I was when I heard my little cousin was having a baby.  The same little cousin I was never too close to due to age difference and perhaps technicalities only making us “cousins-through-marriage.”  Regardless of the details, I always thought so fondly of this little cousin and could not be happier for her.  When I received the news that Zachary had graced the world with his presence, I couldn’t wait for pictures.  Over the next few days, the news of Zack’s diagnosis made it’s way to my side of the family.  It didn’t necessarily shock me or devastate me as it may have others.  I am a Special Education teacher so I know how much love these special little munchkins have to offer and how they seem to brighten any room they enter.  I was however, worried for my little cousin and her family.  I didn’t know how she was feeling.  I didn’t know how her family was feeling.  I know it takes a special kind of person to accept the challenges life throws at them and while I was pretty sure she was just the type of person to handle it, I can’t begin to understand how she must be feeling.  As the days, then weeks, then months passed by I received updates and saw pictures but still wasn’t quite sure how my little cousin was feeling about motherhood.  I knew the holidays were approaching and I was keeping my fingers crossed I’d be seeing her for Christmas.  I was looking forward to giving her a big hug and seeing for myself how she was handling these “challenges” that life had thrown her way.  I also secretly couldn’t wait to get my hands on this cute little bumpkin I’d only seen through pictures!
I remember walking into my mother’s house and seeing my cousin across the kitchen, snuggling with her little man who was sacked out in her arms.  It only took a second; just one quick second and it was clear.  My little cousin was not only glowing, she was a natural at this whole “motherhood” thing.  And really, how could she not be?  Because that was also the moment I met Zack… and in that moment, I fell in love too.
Wendy’s Uncle/Godfather Joe:
Like most people my age, I had little prior experience with Down Syndrome children; certainly there had been none in our family or of close friends of which I was aware.  During my day these children were pretty much hidden from the public, either kept sequestered at home or sent to special schools or institutions.  Only occasionally would we glimpse a DS child (commonly called by that horrible name “Mongolian Idiot”), outside the home, usually being forcefully led by an older and frequently poor woman.  We rarely if ever saw an older DS person.  So, having Zack being born into our family was met with not a little apprehension, sadness, deep concern for his and his parent’s future, and, of course, a great deal of ignorance.  But from that moment on we started to become more educated, more hopeful and more welcoming of this child, almost on a daily basis, through Google and his Mother’s blogs and updates, and, of course, by just being with Zack himself.

Seeing him for the first time, I was taken aback by his shock of sliver-blonde hair and fair skin (I didn’t know “they” came in different colors) and his surprising lack of what I had come to think of as “typical” DS features: swollen protruding tongue, Asiatic eyes, etc., though they are present at times if you look long and hard, but to me they are still not very obvious.  And, of course, there was no way at that time to really judge his intellectual abilities which is also one of the characteristics of DS.  But as the months went by, you tended to notice more his smile, warmth and easy disposition.  He just didn’t seem to fit squarely in the DS box that I had been brought up to expect.  Sure, his legs were disproportionately shorter than his body and his motor movements seemed to lag behind others of his age, but none of that seemed to hinder him from getting around – often too well – using his “crab crawl” or to keep everyone, myself included, from wanting to hold and cuddle him at every chance and to respond to his smiles.

But what amazes and fascinates me most about Zack, since he was about two years of age, is his profound love of books and how he quietly sits and turns each page carefully and “reads” them, full of inflections and emotions and verbal outpourings punctuated by finger pointings towards certain obviously favorite characters, almost always animals.  There is simply no way, watching him, that you can believe that he isn’t actually reading them, line for line, enjoying them and being totally engrossed in them, not unlike his Mother and her love for books.  His quietness and need for occasional solitude do not represent to me anything antisocial or abnormal in the least, but simply his preference for and enjoyment of quiet and alone time at times, especially to relax and enjoy his books, something I can personally identify with.  I think that his easygoing and loving nature – as well as that wonderful smile – and his need at times to be alone in order to read his favorite books are those characteristics that most define him as a person and most endear him to me.  Regardless of whatever level his intellectual or motor skills might progress to in later life, I am certain that Zack will do well in life, foremost because of his loving and supportive parents, but also by virtue of his sweet personality, loving nature towards all people, especially family, his love of books, and his love of and need for moments of quiet reflection and solitary enjoyments, in addition to other activities.  Would that we all might be such a similar person……

Madeline, NDSS: 
When I first started working at NDSS, I did not have a personal connection to Down syndrome.  I knew a little bit about Down syndrome and knew the physical traits but I did not know much else.  Coincidentally, I started in September which was Buddy Walk®  event month and the first event I worked that had interaction with the families.  Meeting the families and being around people with Down syndrome changed my life immediately.

I noticed how dedicated and devoted parents of children and adults with Down syndrome are.  I noticed how many different personalities, abilities and interest people with Down syndrome have.  Some people I met were dependent on their parents and families and others were totally independent.  Some kids were well behaved and others were not.  Some had jobs and families separate from their immediate families.  Some needed some extra attention and support.  And with noticing all that, I noticed that children and people with Down syndrome were just like typical children and people; with different degrees of abilities and accomplishments.

Fundraising for NDSS promotes value, acceptance and inclusion of people with Down syndrome.  We have a policy center in Washington, DC, whose purpose is to fight for the legislative rights of people with Down syndrome.  We have an extensive website with current information about Down syndrome-programs, health, education, and transition. We have publications that range from new parent information to an aging guide.  We also provide scholarships for post-secondary education programs.  Your donation will benefit these initiatives so that children like Zack have the same opportunities as anyone else.

So in closing, when I first started working for NDSS it was just a job.  Now, 12 years later and thousands of connections to Down syndrome, it’s my life’s work.

Please consider a donation in Zack’s honor to the National Down Syndrome Society HERE.

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.

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

Makes you believe in true love

It takes 18 days for a soulmate’s heart to break.

My Grandma passed away the evening of Feb. 6th. Grandpa followed on Monday, the 24th. I think it would have been even sooner if he hadn’t been such a strong man and if some dementia hadn’t rattled him this past year or so.

It’s hard to imagine the world without either of them — the fiery Italian woman with coffee and cookies, Christmas decorations and simple yet effective advice and her sailor, a man who passed his tough love, grizzly-on-the-outside-teddy-bear-on-the-inside demeanor to my Dad. It’s hard to imagine the world without them, but it would have been much more painful for one to endure continued absence of the other.

They would have been married 69 years last week. 69 years watching their five children grow, and watching Grandma inconsolable over the loss of her eldest a few years ago. 69 years watching their farmhouse in the country become a small stamp in Suburbia, 17 grandkids and 17 great-grandkids mingling about their outdoor pool, their shag-carpeted living room, the concrete patio with colorful lights strewn about us in the night.

My grandmother brought the words of wisdom and the most delicious food ever created.

My grandfather was a hard-working man who was still doing odds ‘n’ ends with his backhoe well into his late 70s.

I loved sitting across from my grandma at her kitchen table, escaping the world’s problems and life’s hardships even for just a few moments. And sitting on my grandpa’s lap meant giggles and made-up songs on repeat.

“Baby Face, you got the cutest little Baby Face…”

My Dad has his hands. They are large and strong, they are tan and worn. They are good for holding. They make you stronger, just by holding them for a bit.

“What’s the secret to a happy marriage for so long, Grandpa?” I asked him once.

He smirked mischievously. “You think I’m happy???” he joked. “She tortures me all the time.”

And then they would start their Laurel-and-Hardy-like sketch about him leaving World War II and marrying her and starting World War III.

“Oh, you never had it so good,” she would say, whacking his shoulder with her hand while winking at us.

We, as their legacy holders, never had it as good as we did in their midst. They created incredibly smart individuals — some good with numbers and some good with tools. They created street-smart kiddos, too — the tough little girls and polite little boys who grew up to be good friends and siblings and husbands and wives.

Their home, I think, will quite simply last longer than bricks or stones. It is built with memories and survival and love, and that is the greatest of foundations.

When the wind is light and the air is warm, I can see him, flyswatter or pipe in hand, scanning his land from the front porch. I know she is happy, maybe on the phone, the long cord wrapped around coffee cups and wooden chairs as she stirs her homemade sauce.

“Hello, young lady,” he says in his deep voice. He gives you the best hug like it’s nothing at all, but when you look back over your shoulder as you walk away, he is smiling. He is smiling and nodding and beaming with pride.

Years after my mother passed away, my grandfather would still regularly visit her grave. Such a simple gesture, such a beautiful thought from a kind man who never forgot a life and who lived his as if each day was his last. He suffered when his friends began to pass away, his heart ached so much. I can only imagine the suffering he faced in those moments of clarity these past 18 days when he realized his stubborn soulmate was gone.

When I last saw my Grandpa, the day after he stared at his wife’s coffin on a winter day alternating between “You have to take life as it comes” and bits of confusion, he was sleeping in his recliner in the living room. I wanted desperately to jump into his lap for old times’ sake. But instead, I took his hand in mine. He woke for just a moment, smiled, said “It’ll be OK.”

I don’t know what he meant. Perhaps he meant we would be OK without them. Perhaps he meant he’d be OK.

I just know that in that moment, he was offering me strength, just one last time.

He loved his church and his God, his friends and his home. But most of all, he loved the faces in the 200-plus photographs on their living room walls. Some were yellowed from the sun while others showed brand new babies who wouldn’t remember “Baby Face” or “young lady” but would still, I’m sure, feel and know their love.

Those of us left behind mourn so greatly because we miss their physical mementoes — the hugs and kisses and those strong, callused hands. We miss hearing their laughter and their bickering. We miss the smells of warm meals to feed 12 when only six were invited for dinner. We miss the sound of the backhoe putt-putting across the driveway. The same jokes, the easygoing love between a couple seven decades in the making.

But we can not be sad.

They are together. I have never in my life been so sure of two souls going directly to Heaven as I am with my grandparents. Not only will they pass through the Pearly Gates, they will do so with Frank Sinatra serenading them, John Wayne applauding them and balloons surrounding them. Confetti will rain down on silver hair, hands interlocked again.

And then the lady and her sailor will be reunited. This time, forever. With no war, no loss, no sickness.

My grandfather died from a long decline in health.

And a heart that took 18 days to break in two.

Rest in Peace, you two. And try to stay out of trouble.

Antoinette LaLonde

Robert LaLonde

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.

 

 

Life’s plans

We thought we had made some plans, but life made some plans for us. We go along with it, along with flow, keeping ourselves afloat and letting the adventure be felt in our soul.

So the long story short:
- I’m a different kind of career woman now.
I hardly ever wear a business suit; most days I have to remember to wear jeans instead of sweats — that’s dressing up.
I’m primary caregiver, which means the MIL is FINALLY a grandma and not a babysitter.
I hardly ever miss a bedtime, nap time or school drop-off.
I’ve cleaned with vinegar and baking soda in every room of the house. Multiple times.
Scott and I continue to work on our relationship and finally, it is becoming what it needed to be — there is fairness and communication and “little things” and “little moments.”

I’ve ventured further with my photography and have started work as a Mary Kay beauty consultant. (Who woulda thunk?)

Bottom line:
I’m happy.
Very, very content. I feel as if the entire universe has shifted slightly and once I let go of the fear and anxiety of not having complete control over life, burdens came flying off of my shoulders.

I am sleeping better (and longer).

Things are just falling into place.

Yet, can you blame me if you know me, I’m still waiting for something to go wrong. Life can’t possibly go so well for me without a small disaster coming through town, right? We will see. I try not to worry about and I keep putting my new-found faith in the beauty of today, not the fear of tomorrow.

I have finally learned my children.

The beautiful, ornery little girl who says everything is “poy-pull”, no other colors. The one who is learning new words and forming phrases every day. The little girl who squeals when she sees or hears her brother first thing in the morning; who calls his name when he’s left for school. She’s constantly moving and she’s a bit of a clinger. I love her pizazz! I love her strength.

And then this handsome lil boy who now goes to school five days a week; who still struggles with speech but still delights us with his love for reading and blocks and trains. The one whose teacher said children like Zack teach them more lessons than they could ever possibly teach their kids. Lover of all things breakfast and giver of hugs to his little sister at bedtime. He has a big boy bed and he continues to teach me about life every day.

I’m blessed and I’m reminding myself (by counting to ten or enjoying a few moments of alone time in my reading nook) to remember that I can only control so much and that beyond that, I need to go with the flow. Be a good person, make myself happy and then I’ll be able to make others happy.

On another note, I’m turning 30 in less than a month and would really appreciate help with a list of things I need to remember/do in my 30s.

Help, friends!