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:
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.
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……
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.