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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An Echocardiogram, a Grandma, and Seven Calves

When the baby is missing from his crib, there is a good chance it's because he's being held on the couch by his big brother.

When the baby is missing from his crib, there is a good chance it’s because he’s being held on the couch by his big brother.

It’s 5:00 in the morning, and for right now the house is quiet.  It won’t last long, though.  School is out, and it’s day two of summer vacation.

At 6:00 a few kids will trickle downstairs. They don’t have to be awake that early for anything, but they always are. Regardless of whether they go to bed at 8:00 or late at 10:00, they always wake up promptly at 6:00.  Someday when they hit that teenage stage and I can’t get them awake until noon I might miss this time, but right now I wish the day started just a little later.

I could use a later start because right now, I’m running on baby time: lots of nursing and diaper changing at all hours of the day, intermixed with ordinary life.  Baby time also makes me continually surprised how fast a few hours can go by.  When our baby starts to squirm and fuss, that usually means it’s time to nurse again.  So often I think, “I just nursed him,” and then I look at the clock and realize that an hour or two or three has gone by.  Without a baby’s tummy to mark time, hours go by so quickly in a day.

He’s two weeks old now.  Two weeks in “ordinary time” goes by in a blink, but with a new baby, it feels like a lifetime of living happens in a matter of days.  That lack of sleep combined with a big life change makes all of time seem blurry.  Hours slip by at night, but a baby grows and changes so quickly that a few days can make a huge difference.  In some ways, it feels like he’s always been here, even though he’s so very new.

We’ve been looking at his cute little sleeping face and tiny hands for two weeks.  He’s so irresistibly sweet that I find that after I’ve laid him down for a nap in his pack and play crib, he often disappears.  I’ll look over on the couch and see that he’s been scooped up and sleeping in the arms of an older brother or sister.

In these last two weeks, we’ve also had big news to digest.  I haven’t mentioned this earlier because we were still waiting on official test results.  However, the results confirmed what we suspected when he was born.  Our baby has Down Syndrome.

It’s all come as a complete surprise, with no indications of this during pregnancy. At my 20-week ultrasound, everything checked out just fine.  I remember commenting to Jarred toward the end of my pregnancy that this had been such a completely healthy pregnancy, with everything being just right all along the way (right down to having the least back pain of any pregnancy, with my sixth baby). For a healthy, ordinary pregnancy, I’m so very thankful and it puts me more at ease now.

When he was born, we suspected he might have Down Syndrome based on a few things about his appearance, and he was tested at his five-day checkup. For right now, he is otherwise doing just fine and he’s nursing well, which is important.

Because heart defects are common with Down Syndrome, he is scheduled to get an echocardiogram done this week, which is essentially an ultrasound of his heart. During his ultrasound at 20-weeks pregnant his heart looked good and at his five-day checkup the doctor did not hear any murmur, which are both good signs.

Long term, there are plenty of things to monitor health-wise and obviously things we’ll need to do to help him developmentally, too.  To be honest, at this point I don’t know what all that entails, but I know we’ll be getting a very good education on it all over the years.

So, this little guy took us by surprise.  It’s not what we were expecting, but I also feel like everything is going to be just fine.  I believe he’s here to bring good things to our lives and we’re going to learn so much from him.  We just love him and we’ll just take whatever we need to do in stride.

And truly, he’s just a part of the family.  We’re figuring out our new summer routine with six kids at home.  We also added seven Holstein bull calves to our little farm this week. We’ll be raising them for beef over the next year and a half, and right now, our kids are fascinated by the seven cute calves we’re adding to their chore projects.

With the busyness of life around here, we’re especially thankful for Jarred’s mom, Cheryl.  She drove 1,000 miles on her own to come and see the baby, visit our family, and be a set of open arms for a week.  It’s great to have Grandma here.  All the little things she does are big to us, and she adds a peacefulness to our lives when things feel a little crazy.

That means a lot in a week with an echocardiogram for a baby, six kids home for the summer, and seven new calves in our shed.