Team Zack

Zack’s progress has always happened in waves.

For every surprise accomplishment came a three-month lull.

For every time we worked on walking and jumping and stepping, out came his first words.

When Down Syndrome enters your life and the life of your child, it is a never-ending road of questions, uncertainty, fighting and pushing.

There is no cure, there is no this-is-where-he-will-be-in-five-years.

You must find your resources (Early Intervention therapists, other parents, National Down Syndrome Society, special needs classrooms, and most importantly, yourself…); you must find your support.

And then you just dive in, give it your best, never look back and never look too far forward or you’ll drive yourself crazy.

When Zack was born, we didn’t know if he would ever speak or ever walk on his own. We had no clue if he would have major health issues or zero concerns at all (he falls at the low end of the middle — we battle respiratory illnesses for months at a time, he had two small holes in his heart that do not yet require surgery and a Man Parts issue forced a minor surgery two years ago).

At the end of the day, our prayers for Zack are exactly the same as those for Addie — that they be self-sufficient, polite, responsible, independent, intelligent kiddos and adults. That they enter mainstream school, are loved by their peers and teachers, complete high school and college, find a job that brings them joy and a man or woman who makes them complete and throw a dozen grand babies our way. We hope for graduation parties and Empty Nest Syndrome and a first dance together at their weddings.

And while we hope for the same goals, we realize the journey may be quite difficult for one (or both!).

Zack turns four in August and then we have one year before he should enter Kindergarden, maybe in our local public school system.

But maybe not. Maybe it will be in two years. Maybe three. Maybe it just can’t happen.

We realize both sides of the possibilities, but still we fight with every freakin’ ounce of energy and every bit of resources to make what’s  best for him, not us, happen.

So yesterday we met with his teacher and speech therapist from his special-needs classroom that he’s been attending two mornings a week since January.

Scott and I actually went into the meeting planning on gently removing Zack from the program as we felt he was with kids who demanded much more of the teachers’ attention than him and perhaps we just weren’t seeing the difference or the impact from there as we initially thought we would. It was a good problem to have, we thought. We were appreciative and we gave it a whirl, but hey, our boy is doing great in his “typical” Preschool three days a week!

But then we all got talking. Openly, honestly.

And we have a plan.

There is something about having a plan.

Even if it means more work or more time or more challenges at first. It’s a plan. It’s a step forward. It’s one step closer to that first day of Kindergarden at public school two miles up the road. The day I have been praying for and fearing for quite some time. Where I will lose my —- and bawl at the astonishing journey. But we’re not there yet, so hang tight Ole Emotional Momma.

So, in August, Zack will be trying the afternoon class at this location four days a week, while still maintaining his mornings at the other school. The afternoon class has more “advanced” kids and is a bit more challenging. And it’s primary focus? Kindergarden preparation.

It’s a no-brainer.

Four days may be too much, both schools might be too much. But, it’s my style to go all the way in and retreat a bit if necessary.

A woman I’ve only just recently met through Mary Kay wrote me a letter for Mothers Day. She follows our family through social media and her asking about Zack and Addie is always the first thing to happen when we are in the same room. That means a lot and I’ve always appreciated that.

But then, this letter.

I had actually received it two days before but in all the business of the week, it stayed tucked away in a bag until Wednesday.

This amazing woman of faith and strength shared that she had two special-needs children herself.

She gets it, I understood.

You see, just like the unwanted Motherless Daughters Club you are initiated into without request, so too is there a Special Needs Children Club that is scary yet so rewarding. The bond between we mothers is indescribable.

Anyway.

“I understand the day-to-day struggles and the day-to-day victories,” she wrote. “What some parents see as a small accomplishment, we see as a victory dance worthy.”

I smiled, I cried, I laughed out loud during her letter.

“God knew exactly the kind of Mom that Zack would need,” she shared. “The kind of Mom that would love him, protect him, nurture him, and yes, even fight for him. The kind of Mom that would get that glow in her eyes when she talks about him, post his artwork on FaceBook and sell Mary Kay so she could be home with him and his sister.”

The day I read that was a Battle Day. Battle with the kids’ strong wills. Battle with myself. Battle with DS.

And I opened that letter and it reminded me.

Not only am I not alone, but I am not allowed a pity party.

Zack’s parents, his family, our friends, even strangers are all working together. None of us know where he’ll be or what he’ll be doing in six months or six years or when he’s 26. I scare myself thinking about all the uncertainties.

But, like we said at the parent-teacher conference, we are all Team Zack.

Whatever it takes, we do. Whatever is recommended, we try.

Leave no stone unturned.

The thing is, even if he doesn’t go to college or marry a sweet partner, he will be happy, of that I’m sure.

And even if we never get a dance at his wedding, it’s alright, because he comes up to me several times a day, bows at his waist with a giant smile, holds out his arm and asks me to dance. I can never refuse.

And let me tell you, he’s got some great moves.

 

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.

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

We took a walk, took a moment

I’m glad it’s not perfect all the time. If it were, it would be harder to enjoy those little moments and little hours of perfection that sometimes slip by without us even noticing.

For couple of hours the other day, nothing else mattered. Nothing else even existed, really. Just my family, some leaves and a little bit of love.

20121029-092759.jpg

20121029-092809.jpg

The defining moment was after taking dozens and dozens of photos, I handed the camera over to Scott and said, “Sometimes you have to be, not just see.”
And to my surprise, he didn’t just put the camera down or hide it for a few days, he actually took some pictures; some good ones too.

20121029-092853.jpg

20121029-092902.jpg

20121029-092914.jpg

And when he wasn’t looking, I looked at him like I probably haven’t looked at him in years. I looked at him like the lovers look at each other in the movies, from across the room, with everything else a blur. I don’t know if Scott has ever looked so handsome to me. The way he was twisting the leaf in his hands and watching his family run about in the leafy park. He looked so content and so peaceful and it made me so truly happy.

20121029-092946.jpg

20121029-092954.jpg

My happy day actually began much earlier, when I decided to get something out of the closet and just embrace the past for all that it is and was and not keep it hidden behind closed doors like it didn’t actually happen or like it has to be preserved in plastic until the end of time.
So Zack wore one of the outfits that Uncle Paul had given him years ago when Zack was just a little blob on an ultrasound. And so then we had to put Addie in one of the outfits, too, take some pictures, send them to Aunt Alice and just feel glad that we were remembering that day, even if there was drool and some breakfast On Zack’s Brazil shirt.

20121029-093028.jpg

20121029-093034.jpg

20121029-093041.jpg

The four of us decided to take a walk-the day was perfect – the temperature, the sunshine, all the leaves and that little Autumn breeze.
Two strollers side-by-side, the adults talking about their days and dreams, pointing out cows and colors to the little ones who were taking it in with their wide blue eyes.

20121029-093109.jpg

20121029-093128.jpg

And then, near the end of our walk, I saw it — piles and piles and piles of golden leaves just begging for jumping toddlers. And a Momma.
We threw leaves up into the air, we rolled around in them, and sometimes we just laid down and looked up at the sky together. There was spinning around and of course lots of jumping.
And when Scott wasn’t looking, I took Addie out of her stroller and laid her gently into the leaves and just watched her take it all in for the first time… The feel of a crunchy leaf in her tiny fingers and the breeze on her bare feet. Zack handed her a leaf and applauded when she came down to the space on the ground next to him. He gave tickles and even a kiss. Her smiles in return gave it all away. They really have a beautiful love for one another. And I hope we do this often enough that falling leaves and empty parks on neighborhood walks always remind them of that love.

20121029-093208.jpg

20121029-093224.jpg

20121029-093236.jpg

20121029-093244.jpg

20121029-093250.jpg

20121029-093303.jpg

We took so long on that walk that dinner was a little later than usual that night and then, because Momma had to look at all of her photos to see what moments had been captured, bedtime was a little late, too. After all, there was backlighting and bokeh and all sorts of beautiful smiles.

I went to sleep smiling that night, and I think everyone in my family did, too.

20121029-093341.jpg

20121029-093405.jpg

Rabbit, rabbit

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

20120502-103635.jpg

20120502-103702.jpg

20120502-103744.jpg

20120502-103812.jpg

20120502-103836.jpg

20120502-103904.jpg

20120502-103927.jpg

20120502-103952.jpg

The year that was…

… a journey.

… an adventure.

… throat-clogging lows.

… heart-pumping highs.

It was the year that was understanding. And acceptance. Both long overdue.

Where small triumphs yielded loud, triumphant applause.

It was the year that was risky. Whose risks brought rewards. And peace. Risks that showed us who we were and taught us never to think we were at where we were going to end.

This. This was the year where “what if” was brought up once, maybe twice, (and maybe 200 times) as we contemplated expansion and the future of our family.

There was loss. No more travel logs from Asia, but still I hold tight to the memories. The memories, the photos, the love and all those newspapers from places far away. The last stares at a nephew in his first swim, soaking it all in.

And then, as that circle of life will do, after loss came growth. A positive test, met not by the excited screams we had two years ago, but instead the hold-your-hand-through-this-roller coaster embrace; the in-it-no-matter-what familiar kiss.

It’s been a year of risks. Because that’s what you do when you start seeing all of your rewards, your blessings, your gifts… you thank your lord, you cross your fingers, you hold tight to faith. Take two deep breaths, wink at the one you love and jump into that deep end.

Because the good stuff is hidden.

Because it’s buried deep beneath everything else you’re too busy seeing.

It’s there.

And we found it, slowly but surely, this year.

No one knows what 2012 holds in store for us all.

If we’re really, truly, unbelievably lucky, there will be a little brother or sister for Z-man. There will be tiny fingers that won’t stay small all that long. There will be long, exhausting nights and days and definitely a lot of laughter. Because that’s how we roll ’round here.

2012 is a mystery. But it wasn’t so long ago that 2011 was its own little secret.

And I’m almost sad to see it go.

But so ready to put my hands up in the air and feel a fast breeze roll through my fingers. I’ll close my eyes tight and then I’ll be a brave lil girl and open them up wide so I can watch every second of the ride. And I’ll smile a time or two when it’s all over, amazed and proud that I made it; that I even attempted it.

One day at a time.

Ready? We’ll do it together.

Here we go…

Click your heels together three times

The Z-Man and I went on an adventure to New Jersey together this past weekend — just the two of us. (Daddy needed a Sanity Break, plus he got lots done around the house!)

I needed Jersey. Every now and then, usually between two and three months from my last visit, I just crave the sights I grew up around, the people who made me who I am today. I yearn for the bridges and road signs and twisted tree branches and sounds that bring me back to 10 and 16 years old. I need Chicky Kisses and Papa Bear Hugs. And I hope Zack grows up wanting and loving those things, too.

Considering the fact that on Friday I was taking photos of flowers and red leaves at my parents’ house and on Sunday we were trudging around in snow from an unexpected storm that left them without power for several days and left Zack and I to have a slumber party with Aunt Alice Saturday night, everything went great!

 

 

 

 

 

 

 

 

I had the most fun just watching everybody gobble up Zack and his happy personality. Many of those we saw this weekend haven’t seen Big Man in three months and he has changed SO much. He was part of a Pumpkin Party with delicious food; he received Chochie’s infamous kisses and pulled on Pop-Pop’s nose. There were cousins and aunts and grandparents and even extended family. There were hugs and truck noises and laughs and picture-taking. And a really cute video of him eating turkey pieces floating around Facebook.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My aunt has been through an unimaginable year yet her love for Zack was so huge, so obvious. I just kept whispering to Zack, “You are loved so much, you are loved so much.”

I love seeing my aunt as a “Chochie”, my dad as a grandfather, my niece as a proud big cousin. I loved seeing my grandmother on her hands and knees offering Zack pumpkins from her Halloween lights and little cousin Ryan singing Bob the Builder to an amazed Z-Man, taking in his every move.

It was such a beautiful adventure.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

You are so loved, you are so loved, you are so loved.

Silence isn’t a bad thing

Miss us?

Especially the blond-haired, blue-eyed, drooly-smile guy?

Sorry ’bout that.

We’re doing great. Beyond great. Things have been busy and things have been so, so beautiful, that I’ve just chosen a few quiet weeks to mull it all over in my mind rather than boring you with stories of how amazing my little man is… I mean, you knew that anyway, right?

It’s been a great few weeks.

We got through the cardiologist and urologist appointments easier than imagined. It’s still not easy watching ultrasound goo coat your 14-month-old’s round little belly, hands flailing, tears streaming, but the results were good: one of his holes in his heart has closed up on its own; the other is slowly but surely doing the same. We go back in one year for a check-up.

The urologist appointment in Pittsburgh gave us an excuse to test out another of my hotel chain’s properties and to explore the Three Rivers city a bit, a mini-getaway if you will. Zack loves his new carseat and spent most of the trip waving at us from the backseat. I got the camera out and played around with cityscape images.

And Little Man is now going to be visited by a third Early Intervention friend — an occupational therapist who will work on feeding, drinking, textures and some self-sufficiency. She seems so sweet and she will fit in with our EI family (like Miss Sheri, our special instructor who brings us rice to put our hands in and PlayDoh to stretch and pull!) just fine.

New skills include standing — everywhere and anywhere — in his pack-n-play, a good morning salute from his crib each day, the landing step downstairs, pulling himself up at the couch cushions to say “hi” to Momma. He loves the new altitude, the new view and grins from ear to ear like the little show-off that he is, which we love almost as much as the feat itself.

I have absolutely fallen for Fall. Zack’s love for leaves, his big curious eyes as we uncover local treats — covered bridges with friends and lunch dates and playdates and the beauty of a light jacket and an Autumn breeze — have given me such an appreciation and love for the season myself. He is discovering and uncovering so much. I love that he’s taking us along with him for that ride.

But there are adventures to be had indoors, too.

Visits from a favorite uncle on his way to a Southwestern Adventure.

Coming home from work to see images like this:

And there are just a thousand other “everyday moments” that I pray I remember in six months, in five years, when Zack’s 30, when I’m 90. The moments that remind me that being a mother is the most amazing thing I have ever done and will ever do in my life.

(And now a big mysterious shout-out to a someone special who let me and some others know about her long-awaited, already-loved baby-to-be news. I won’t ruin your public-place-let-it-out-there sharing… but I’m so happy for you! xoxo)

So we’ve been quiet.

But we’ve been great.

And things will only get better.

*Z-Man and Momma are off to New Jersey to visit with family this weekend. We’ll share our adventure next week when we return!

“God gave me you…”

‘Cause God gave me you for the ups and downs

God gave me you for the days of doubt.

 

Yup.

 

I’ve known Scott for more than five years and we fell in love immediately. A blind date, a semi-long distance relationship, contradicting work hours and different lifestyles and backgrounds, but we worked hard, we fell hard. Moving in together and road trips and day trips and photos and games. Cats and dogs and a baby, too.

All the while, we laughed. A lot. I’m always laughing with Scott. For our anniversary, we had two days, just us (OK, and a cute baby) and all I freakin’ did was laugh. Over and over. Belly laughs and giggly giggles.

 

 

 

 

 

 

 

Two years ago, I promised Scott and he promised me to love no matter what — through ups and downs, through trials, through happy times, in sickness and in health. Our vows didn’t mention all the hardships we’ve faced as a team in great detail, but I’m still not surprised at the strength of our partnership.

My wedding day was one of the happiest days of my life, and one of the most special. I had so much fun, I felt so loved, and of course there was laughter.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My wedding day was indeed a beautiful day, despite a torrential downpour, a unity candle that wouldn’t light and forgetting our marriage license. Ooooh, and did I mention our AMAZING honeymoon? Le sigh.

But some of my favorite moments in my life come from early-morning kisses, watching Scott as a father, being silly and staying up late, and sharing tears and worries and fears and doubts.

I have fallen more in love with Scott in the past two years, in the past 13 months, in the past six weeks than I ever thought possible.

You want cheesy lines? I got ’em.

 

He completes me.

 

 

 

 

 

 

 

 

 

 

He is my everything.

 

 

 

 

 

 

 

 

 

 

 

He is my best friend.

I love him, I love him, I love him.

 

 

 

 

 

 

 

 

 

 

A simple day

My favorite days are spent in pajamas, with no make-up. Yesterday I grossly forgot to brush my teeth until about 4 p.m. You see, I was having too much fun with a handome little man.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

He peers up at me from underneath the dining room table, another new trick now that he’s crawling further and faster. I feel a tug on my pants leg, look down to big blue eyes and then, right on cue: “Ma” with a smile. My heart melts and I have an absolute out-of-body experience as I try to wrap my head around this growing, loving little boy that once grew inside of me.

 

 

 

 

I hold him a little closer, as if I can feel his independence taking him away, at least in the form of fewer snuggles. Some nights, I creep into his room to the hums of Scott’s snoring in the background, work clothes still on, holding my heels and I just stand over him, sometimes caressing a foot and whispering “I love you” over and over and over.

 

It’s turning chilly here, temperatures in my favorite range of the mid-60s. Zack and I both don our comfy sweatpants and enjoy the slight breeze that blows over the scattered toys of the newly-rearranged living room. We retreat to the backyard when we can because I think we can both sense that this Autumn will quickly pass and that soon it will be sledding and crackling wood in the fireplace.

 

Last night when Scott got home from work, I begged him to take a walk with us, like old times. He quickly and happily agreed. With Scott manning the two beasts — our slow-walking adopted Greyhound and Izzie, our sprinting, circling, barking Yorkie — we put The Dude in his new umbrella stroller, where he loved the freedom, spinning around to watch the dogs and look up at his parents, all the while the sun landing softly on his light blond locks.

We marched past the fire house across the road, taking up most of the street with our rag-tag posse, up the hill near the church where we were married nearly two years ago and up to the tennis courts where we used to let the dogs run wild to release energy; where we talked about our future while I laid a hand on my huge belly.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I love our little town. I feel secure here and surrounded by beautiful, quiet comfort.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

It was just a great, simple day. I didn’t get much done and I didn’t exactly look the part of a supermodel. But our little family was happy.

I got quiet last night and Scott grew concerned, especially since my emotions have been up and down these past few weeks.

“What happened to your smile?” He asked, half-expecting a fight of some kind.

“I’m just keeping it inside, thinking about all these things that are making me so happy at this very moment,” I said.

I wanted to tell him it was him, it was Zack, our home, our town, the culmination of it all that was making me feel very, very blessed and loved.

 

 

 

That a simple day made me so very happy.