World Down Syndrome Day…Because Down Syndrome is My World

We are going to give him every opportunity we can to learn, grow, and become the best person he can be. We want that for every child.

World Down Syndrome Day is on March 21. The date (3/21) is significant because it is the triplication of the 21st chromosome that causes Down syndrome. The day is globally recognized as a time to spread awareness of what it means to have Down syndrome, and share the vital role that people with Down syndrome have in their communities.

For me personally, I don’t need a specific day to be aware of Down syndrome, because Down syndrome is my world. Rather, a sweet little ten-month old baby boy is my world, and he also happens to have Down syndrome. Because of him, anytime I see anything about Down syndrome, my eyes are open and my ears are listening.

Something that caught my eye is a new video that was released in conjunction with World Down Syndrome Day. The video is called “Not Special Needs,” and it can be seen on youtube.com. It’s a humorous but thought provoking two-minute video that highlights the paradox of suggesting that someone’s needs are special. If you are on the internet and have two minutes, check it out.

Picture a guy in relaxed bliss on a massage table with a fluffy cat rubbing his back : “If people with Down syndrome needed to have cat massages, THAT would be special.” It has a few more funny scenarios of what would be “special needs” like wearing a suit of armor or eating dinosaur eggs. But what people with Down syndrome really need are “education, jobs, opportunities, friends, and some love, just like everyone else.” Those are not special needs, but human needs.

In the world here at our house, it’s the same concept, but different. We don’t have special Down syndrome baby toys, just baby toys. I don’t have Down syndrome baby food or outfits. It seems kind of funny, but the realization that there aren’t special toys, food, or clothes was comforting to me when he was brand new. He’s just a baby.

When he was born, I felt overwhelmed because I didn’t know how to take care of a baby with Down syndrome. I remember sitting on the couch and talking to my sister-in-law Tricia about it. She pointed out that he just needs love and for his needs to be met, the same as all babies. That made sense to me; that I could do. And the advice was meaningful because Tricia has extensive experience and education on the subject, with starting an adult family home and for years caring for her own sister Rose who had Down Syndrome. We just need to take care of him, just like we’ve done with all of our kids. And so, we do.

But it’s not just business as usual; he has expanded our world. A few months ago my kids noticed a display in the children’s department at Target. One of the models of children’s clothing was a little boy with Down syndrome. They were all excited to see that and commented how cool it was to see a kid like their little brother. I agreed.

I’ll be honest that the cynical part of me used to sometimes roll my eyes, thinking that sort of inclusiveness felt like a very staged and calculated move from companies trying overly hard to be politically correct. I’ve changed my view, though, as a parent of a son with Down syndrome. I’m happy that the executives in big marketing departments have expanded their perspective, and I view that inclusiveness with gratitude. Kids are just kids, and they happen to come in all sorts of packages. Yes, it is cool to see a little boy like my son on a billboard.

It’s cool to see because it makes me excited for the future. I can’t wait to see what he is like when he gets older. I can’t wait to see the person he becomes. Each one of our kids share similarities with each other, but they are each so unique in their personalities. Sometimes my mind moves ahead in time, and envisions what our family dynamic is like when our kids are older. I see good things ahead.

My oldest daughter commented one day “he’s such a peaceful little soul.” She so perceptively nailed it. He truly is a peaceful little soul. He has been since day one. I can’t wait to see how his personality grows as he gets older.

Right now, though, he’s just our sweet little baby boy. He’s just a few days shy of ten months. He loves crinkling up paper and shoving it in his mouth before it gets taken away. One of his greatest joys is sock removal. He loves holding spoons in each hand while in his high chair and making racket with a big smile or lots of concentration.

He’s developed his balance enough to become a champion sitter. He loves hanging out on the carpet in the action with other kids, grabbing blocks and dumping them out of the bucket, and playing peek-a-boo with blankets.

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And, he’s a lover. He often reaches out to get from one person to another to give hugs and snuggles. He gives real hugs at bedtime, reaching arms out and wrapping his hands around his siblings’ necks. He gives big open mouth kisses on our cheeks. And, he’s a real, live baby. That means in the middle of snuggles, he’ll also reach out and grab handfuls of long hair. Or Dad’s cheeks, or his brother’s nose. HONK!

He gives all of us so much joy. We get big smiles when he wakes up, smiles for kids when they come home from school, and when everyone is laughing at the dinner table, he’s watching us and smiling because we are.

And as he grows, we are going to give him every opportunity we can to learn, grow, and become the best person he can be. We want that for every child. So, from us, happy World Down Syndrome Day…because someone with Down syndrome is our world. And we wouldn’t have it any other way.

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Remembering my Brother: A Few Mike Stories

Written July 1, 2013.

If I could rewind time back to two weeks ago, I would. Two weeks ago, the family gathered for our typical Sunday brunch at my mom’s house. My brother, Mike, made a comment about how nice it was that we all get together every week, and how generally speaking, Republican or Democrat, we all get along, even if we don’t all agree on politics. I joked, “Yep, we still all like to eat bacon together.”

That Sunday, Father’s Day, I asked for Mike’s advice about our 110 new chicks, the ones that he and his family helped with when the chicks arrived earlier in the month. Later that day, Mike and his daughter, Katie, went out to our place where they sorted through some things that they had stored in our shed, getting ready for a garage sale. It was just an ordinary day.

Since the 19th of June when we lost Mike, life has been anything but ordinary.

Last Sunday after brunch, instead of hanging out at Grandma’s, we all spent the evening at Mike’s visitation. Our family met with an amazing gathering of friends, neighbors, and extended family. Mike’s longtime friends from his AGR fraternity at the U of M showed up, neighbors from growing up on the farm, first cousins that we hadn’t seen in years, former teachers…

While we stood there at the funeral home, I kept wishing that gathering of friends and family happened under different circumstances. It would have been one of Mike’s favorite days. Mike loved getting together, talking and telling stories.

Mike at work: a talented pilot, doing a job he loved.

Mike at work: a talented pilot, doing a job he loved.

In honor of Mike’s love of a good story, I’d like to share a couple of stories about Mike himself. These are just a few of the many stories that my brother, David, and I shared during Mike’s eulogy last week.

This first story is one that Mike told just a few weeks ago over Sunday brunch.

The Bee on the Bus
One day when Mike was in kindergarten, he brought a special bag of rocks to school for show and tell. He collected the rocks from a visit to Lucy and Tom’s cabin (our aunt and uncle). That day on the kindergarten bus, there was a bee, and the little girls on the bus were all screaming.

Mike sprang into action. He grabbed the only thing he had, his bag of rocks for show and tell. Swinging the bag of rocks with all his kindergarten might, he busted the window on the bus.

He also killed the bee. And in the end, he never did get in trouble about the window.

Rosewood
In 2001, during my summer break from college, my brother, Mike, offered me a job that turned into one of my most valuable learning experiences.

I spent that summer working at Rosewood, a family-style home for adults with disabilities that Mike and his wife, Tricia, founded in Clear Lake, WI. Tricia’s older sister, Rose, has Down’s Syndrome, and Tricia has always been passionate about caring for people with disabilities. At the time, Mike and Tricia did not yet have Rose in their care (as they do now), but they named the home they created in her honor, Rosewood.

Mike with Rose.

Mike with his sister-in-law, Rose.

My summer job working at Rosewood was a gift for me in several ways. At the time I was a single college student, with no one to worry about but myself. While I was at Rosewood, though, I felt like the house mom, even though all the ladies I cared for were quite a bit older than me. I spent my days planning and cooking nutritious meals, making sure everyone was clean and well cared for, helped provide lots of hands-on activities for the ladies, all the while trying to care for them in a way that was respectful.

Summed up, what I learned was the basis for selfless giving that I needed later on as a mother.

On Sundays while I worked at Rosewood, I always brought the ladies to church. I usually sat just behind Mike and Tricia and their new baby, Katie. Mike often was the reader, standing in front of the church. One of my favorite parts of that summer was being “on the job” and getting to hold my sweet, smiley little niece during church.

That summer also gave me the opportunity to see my brother, Mike, from an adult perspective.

When Mike and Tricia moved to Clear Lake, WI to farm, they knew no one in that area and were looked at as a bit of a curiosity, being a young couple just starting to farm and completely unknown to anyone in the community. During the summer I worked at Rosewood, just a few years after they moved to that area, I was impressed to see that Mike and Tricia were obviously well-liked and respected people in the community.

In my brother, Mike, I saw a capable man who got things done. In the short span of a few years in Wisconsin, Mike and Tricia established both a farm and a home for adults with disabilities, and also provided foster care. I also got to see my brother as a dad, one with a burp cloth over his shoulder who could work out tummy bubbles and get a fussy baby to sleep.

Mike was that same capable boy who killed the bee on the bus with his bag of rocks, all grown up, and still taking care of people and getting amazing things done.

And now, he is missed.

To be honest, I really didn’t feel like writing anything today. It’s hard to sort through the multitude of thoughts and emotions in my head and heart, let alone put anything down on paper. I’m writing today, though, for Mike. He always liked to read the stories in my weekly column. I can’t bring him back; the best I can do is simply share a small part of why he meant so much to so many people.

In the last week, the phrase “it takes a village” came to my mind. I know that the expression usually ends with “to raise a child,” but I’m seeing over and over that it also takes a village to get through a loss like this.

While much of the news reports negativity, I would like to report that I see a world full of kind, loving people in the midst of this sadness. Friends, neighbors, and even complete strangers have come forward with helping hands and kind words. Thank you so much.

Mike leaves behind his wife, Tricia, his daughter, Katie (12), his son, Daniel (9), and Rose, Tricia’s sister with disabilities who is a part of their family.

Mike Kramer's family: Daniel (9), wife, Tricia, Rose, Katie (12), Mike.  Mike passed away in a helicopter accident on June 19. (photo from Tricia Kramer)

Mike Kramer’s family: Daniel (9), wife, Tricia, Rose, Katie (12), Mike. Mike passed away in a helicopter accident on June 19. (photo from Tricia Kramer)

Many people ask if there is a way they can help. One way you can help is by donating to the benefit that we (the siblings) set up to help pay for future college costs for Katie and Daniel and for Rose’s ongoing care:

Katie and Daniel Kramer and Rose Benefit
Merchants Bank
1130 Whitewater Ave
St. Charles, MN 55972

Donations can also be made online:
http://www.youcaring.com/mikekramer

Thank you again for all of your support.