Holland....

 Welcome To Holland
by Emily Perl Kingsley
©1987 by Emily Perl Kingsley. All rights reserved. Article printed with permission of the author.
I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.
After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."
But there's been a change in the flight plan.  They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.
It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever  go away...because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
*     *     *

World Down Syndrome Day!!!

     Kezia was born with 3 copies of the 21st chromosome...one of those copies attached itself to the top of the 14th chromosome....giving Kezia translocation trisomy 21. It is no different than regular trisomy 21 just means it could be genetic, but we don't know. There is one person in every 691 born with Down syndrome. When I was pregnant with Kezia the chances of giving birth to a baby with Down syndrome was one in 1,250 for my age. More babies with Down syndrome are born to mom's under the age of 35 in fact 80%. Amazing odds that our lives would be touched my our angel!

     To celebrate World Down Syndrome Day, I took a great book about differences called, My Friend, Isabella, to Kezia's classroom and read the story to her class. It was great because we talked about the differences of all the kids, not just the one's there because of delays. Kezia goes to STRIDE Learning Center which is a developmental preschool. She is in a classroom with kids that have big delays, small delays, and no delays. The teachers are able to incorporate learning for all of these children.

     We are grateful for Kezia and her extra chromosome. She has made our lives a little sweeter. She brings smiles to tears, laughter to crying, messes to clean, happiness to all!



Kezia, NOT safe!

     How do you teach your child that doesn't understand something? This is the question that still has me perplexed. Anyone who knows Kezia knows she loves to run. She is never found just walking when she could be running. And she is extremely adventurous which has made my life a nightmare at times.
     My million dollar question, also, has her teachers stumped. These are professionals that have been teaching school and deal with small developmentally delayed children all day. We have an IEP (Individual Education Plan) goal for Kezia to be aware and safe in her environment. But, just when we all think that she is starting to be safe she teaches us that is not so true.
    The beautiful weather we have been having in this area has given rise to kids wanting to play outside. How do you tell kids no when you yourself want to be out in the beautiful spring, like weather? So, out we went yesterday after school. Kezia had followed her big brother around their boundaries. Kezia's is a lot smaller, but she rarely realizes this as she often exceeds those limitations. So, big brother returns little miss and off he goes again to play. Again she takes off, but this time she went too far. When he realized he couldn't catch her and needed help, he did the right thing and immediately came and got me. She had run a block and a half then proceed to go underneath the via duct where the trains go under (thank goodness there is a fence keeping people out of the rail yard). She then ran to the busiest road in our neighborhood where it is actually a numbered freeway. She was standing on the corner looking back and forth waiting for the cars to stop when a man and then a woman stopped to rescue her. Thank goodness for our earlier lesson. She had gone across our street and I told her that she had to stop and look both ways. Without me telling her that thirty minutes prior, she may have not stopped at the corner.
      I wasn't far behind them. I was waiting at the intersection for the light to turn green when I noticed an ambulance coming in her direction. I had yet to locate her and my mind went to the worst possible scenario. I stopped breathing, my heart stopped beating, I just froze. The ambulance whizzed by and I felt myself breathe. The light turned green and I soon located my run-away. In this whole process the man who first stopped had called the police, so I waited until they came. The officer took my information, took the good Samaritans information and told me he would have to forward the information to DFS because it was one of the busiest intersections in the city. I called them this morning from the advice given to me by her teacher Angela, who has had to deal with the agency before. She told me to be proactive with them. The supervisor was very nice and said they might be out if the report got forwarded, but that this is a common problem from little one's in our community. They are kids and kids love to wander.
     I am not the only one Kezia runs for. She has snuck out of her classroom where there are multiple adults and a bell on the door. She runs when we are at church. She runs in the grocery store. She runs everywhere. Kezia's attention span is increasing, but when she starts to get bored she wanders. When you go after her, she squeals and runs faster thinking it is a game of cat and mouse. She is the mouse and loves to be caught. This is cute when it doesn't involve her being put in danger.
     I gave my Kezia the biggest hug. She gave me a hug. I put her in her car seat and tried not to cry because I had just had the worst scare of my entire life. I am so grateful for the good people in our city who have enough common sense to notice my tiny five-year-old standing on a corner by herself.
     So back to my question: How do you teach your child that doesn't understand something? While I don't have all the answers and I don't want them. I have learned many things pertaining to Kezia, but one thing I have learned the most is that Kezia is here not for us to teach, but for her to teach us. This lesson from Kezia is to love her even when she does something she doesn't understand.

-Ik ben slordig-

   Most days life goes on in a form of chaos, but normal way. Then we get a day filled with complete chaos; today was one of those days. Our house is usually filled with clutter of kid toys here, games there. We live in such a small space for five people, but we make it work. Today, Kezia decided to get into the bread after it was accidentally left out. It is now all over the house. Who was watching her, you ask? Well, I was, but she is sneaky. You don't believe me then I will let you watch her for the afternoon and you will be handing her back with a huge grin on your face.

     I was insane and thought ice cream would be a great treat for the kids. She not only had vanilla all over her face, but all over her clothes, and all over her car seat. It is one dairy of a mess. Dinner tonight was simple, rolled quesadillas. How can that go wrong? She decided that she was finished and instead of putting her plate in the proper place decided the floor was good enough. I have to say that most days I can handle the "ik ben slordig" Kezia. (if you don't know what that means then look it up with the dutch translation) But nights like tonight make everything she does seem like nails on a chalkboard. A lot parents can't understand the frustrations that come with raising a child that has been on the earth for five years, but developmentally a lot younger. I love my Kezia. I love the yogurt on my stairs, the sour cream all over, the chocolate on the walls, and the Cheetos's in every nook and cranny. Ok, maybe not the messes, but I love my Kezia and the fact that we have those messes everywhere. While there are days that are more frustrating, I wouldn't trade the bad ones for a million days with a "typical" child because then I would be missing out on the messy, wet kisses and big, giant hugs!

**My Favorite Doctor**

     Kezia had her annual well-child check up with her doctor. These are usually hard moments for me, but I have learned to REFUSE to fill out anything about Kezia's development. You can ask me where she is at, but do no ask me to compare her to "typical" children. Amazingly, Kezia's doctor is terrific! She is the only person that Kezia allows to look in her ears, listen to her heart and lungs, and look down her throat. This is no small task. And we don't blame her because she has been poked by so many different doctors, nurses, and hospital staff. In five short years, she has been hospitalized twice, had a feeding tube put in and taken out which meant: three surgeries, two ABR's to check her hearing, two set of tubes in her ears, tonsils and adenoids, and sedation for dental work. She has had three echo cardiograms, x-rays, GI studies, a sleep study and blood draws too many to count. And with all of this she still allows one doctor to look at her and make sure she is ok.

     Kezia gets so excited when I tell her we are going to see "Dr. Z" (Dr. K. Zarzycki). She gets out of the car and runs to the door making sure to push the handicap operator, so she can independently run into the waiting room for the elevators. She pushes the buttons now all by herself then we wait to be taken from the parking garage to the floor where the clinic is located. As soon as the elevator door opens, out she runs as fast as her little legs will carry her. She can now open the door to the office all by herself, a feat that has taken two years to do. In she walks and the receptionists get a smile on their face because they know Kezia is there and she is just so adorable. Today, I get her book out and she sits at the kid table and reads or what to her is reading. They call her name and she runs to the nurse and follows telling me to follow behind. We put our stuff in the room and she tells me to stay while her and the nurse measure how very tall she has gotten and how much weight she has gained or how little weight she has gained. By this point we usually have an extra one or two nurses following behind not for any reason, but just because they want to have their day made brighter. (You would too if you gave shots to kids all day and they screamed at you) Kezia proudly walks back into the room and pushes herself up on the bench to sit next to me. Then it starts. She realizes the nurse has the blood pressure cuff, something Kezia has never gotten used to and, frankly, hates it. We convince her it will give her a hug and then all is good once again. While we wait for the doctor to come in Kezia gets antsy, but who wouldn't while waiting. We hardly ever wait longer than five minutes and in comes Kezia's favorite person. We talk about where she is at developmentally and asks if there is any concerns. Kezia hops up on the exam bench and lifts her shirt so Dr. Z can listen and look. Dr. Z. proudly exclaims that her nose is looking great! Phew, a relief since we have had influenza bacteria in her nose for months many even a year. We look at her weight and height on the Down syndrome chart and see she is steadily progressing which is all we ask Kezia to do. So today Kezia gets an A+ for being so great. Dr. Z. tells us she will see us for her next well-check in a year and then we both kind of laugh because we know Kezia will most likely get sick before then and need to be seen. We aren't being pessimistic just being true to what is.

     Kezia weighs in at 27 pounds and is 35 inches long. These are great numbers as it means she is progressing instead of digressing which we have experienced. Her brother and sister often ask when she will get bigger or when she will talk better or when this or that will happen or if it will even happen at all. They are curious and now realize there is a delay that other kids don't have. My answer is she will do it when she is ready. Nothing is out of reach for Kezia!

     I'm not sure which country Dr. Zarzycki is from, but it is one of the European countries that probably made up Russia. Her accent is strong, but her English is great. She always is so kind and compassionate with each child. She truly cares which is rare for doctors today. If there is a problem with any tests we have done she calls me herself and lets me know what we need to do. I am very blessed for Kezia's pediatrician to be so wonderful! So, today thank you Dr. Zarzycki for making our doctor visits so much better than they were before we moved here!

~Mikky Dee's~

     When it came time for Kezia's birthday and I decided it was the right year for her to have a birthday party. She has friends from STRIDE where she goes to preschool, friends from our neighborhood, and friends from church. Why not have a party to celebrate our five years in Holland!

     Kezia absolutely loves McDonald's! Every time we drive past she yells, "STOP!" The first time she did this I didn't realize she was yelling at us to stop there, I thought there was something wrong. After I realized what she wanted I had a good chuckle. Honestly, I have no idea what it is that she loves so much about McDonald's, I mean they only have some of the coolest play lands and then there is the Happy Meal.

      

     The smile on her face and the joy of being surrounded by her best friends and family was priceless! She loved going down the slide and climbing up the play place. She LOVED opening presents that were full of Dora. (Her first favorite is Dora, McDonald's comes in second) Kezia loved eating her Happy Meal of nothing else but chicken nuggets, french fries and a coke. I think that if she could she would have that every day. She thought the ice cream and cake was great. I am so glad she had so much fun that she didn't want to leave and threw a fit when I was getting her shoes on. It was a great way to celebrate Kezia!



--Happy 5th Birthday--

     Five years ago today our angel joined our family. Kezia came to our family not for us to teach her, but for her to teach us. In five years she has taught us a lifetime of learning and continues to teach us everyday. When we started this journey we set out to a place far different than Kezia has taken us. Who would have thought the world of Down syndrome was so beautiful?
     She has grown from our 5.1 pound baby into our 27 pound big girl. She started out only 16 inches long and while still short is now standing tall at 3 feet. To those who know or see Kezia they assume she is much younger, but they misjudge her in more ways than height. Kezia follows her own guidelines in life and she will do what she has her mind set to when she is ready to do them. She is a feisty child with a determination all her own. She is my best helper even when frosting the cans of soup or taking them off the shelf just to put them back again. She loves her family more than anything and is always so excited to see us when we have been apart even if it is for five minutes. She has learned to roll, sit up, crawl, stand, walk, go up stairs, and jump. She has gone from no cries to many words to express herself.

     Kezia has seen more doctors in her five years than most people see in their lifetimes. She has had more tests done, more surgeries, and more hospital stays than typically occur in children. She has been hospitalized twice, had eight sedation's/surgeries, three echo cardiograms and many blood draws. But through it all she has made the doctors and nurses smile. She has gone from being fed through a tube to eating a meal and gaining weight on her own.
     Our angel has many things she likes, but a few things she absolutely loves. One of these things is Dora: the Explorer. She loves watching the tv show, loves playing with her Dora dolls, and loves, loves, loves Backpack. Kezia loves to play with her toys and her siblings toys. She loves her friends in her church class and her preschool class. She loves school and loves to read books. She, also, loves to build things with Lego's and blocks and anything available to build.She loves to ride her bike, play at the park, and run. She loves to climb the rock walls at the park, swinging, and going down the slide head first.  She loves playing trucks and cars with her big brother and with her sister she loves to play dolls and let her sister put her hair up. She loves to play outside especially with her dog and cat. 

     Five years and we have been through so much together. We have laughed together, cried together, and played together. The places we have been and the journey getting here to this point in time has been worth every second.  Kezia, you make this world a better place, Thank you!

Happy 5th Birthday!