The Better to Hear You With

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Enjoying a little pool time on the porch and now hearing all kinds of new things.

A 5th grade girls sleepover, relocating 65 baby chicks out of a stock tank and into the roomy shed, a bonfire, swimming at the pool, a surgery for ear tubes, strep throat…just four days into summer vacation, I feel like we’ve squeezed in about a month’s worth of activity.

One of the highlights of my day today: when I clicked my fingernails together behind my baby boy’s head, he turned his head to that sound. That seems like nothing, but that is a big deal because I’ve never seen him do that before. He was hearing it for the first time. That simple action is the result of numerous hearing checkups, appointments, and finally, this morning’s surgery to get tubes put into his ears.

With Down sydrome, he goes in regularly for hearing checks. Since last September, each time he’s gone in for a check, he’s had fluid in his ears. While it’s normal to have fluid in ears temporarily from a cold, his ears never drained themselves. After monitoring it over months, his doctors decided getting tubes to drain the fluid was the best course of action since the fluid impairs his hearing.

Realizing that he’s lived most of his first year with very muffled hearing (equivalent to wearing ear plugs), I’ve been so anxious for him to have better hearing. And at the same time, I’ve been dreading him having surgery, even that minor one.

This morning Jarred and I and a sleepy baby were on the road heading to Rochester well before 6 AM. Babies get the earliest surgery time slots to minimize the amount of time they have to go without eating or drinking. I’m so thankful for that. As I walked out in the early morning sunshine, I was also thankful for summertime daylight. It would have been so much harder to scoop a baby out of a warm bed and head out into the cold and dark at 5:30 on a winter morning.

By 7:00 AM we’d finished all of the check-in procedures, and it felt like such a long half of an hour to wait until his surgery time when all he really wanted to do was nurse, but couldn’t. We rattled off his name and date of birth half a dozen times for surgery protocol checklists, met with the doctors, and off he went. By 8:00, his surgery was done and he was back in my arms. All went well.

I have to say, though, that the morning was one long blur. Between being anxious and not sleeping well and getting up extra early, I was definitely in a fog. It’s the kind of morning that called for some coffee. On the way in though, I elected not to share a drink from the big mug Jarred brought. He’s had a sore throat for days, and his throat looked really bad with white spots, so we were pretty sure he had strep. Coffee? Strep? I chose no coffee and hopefully no strep.

After our baby had some time to recover from anesthesia and nurse until his belly was full, we were free to go. We left the hospital and I got my own coffee, and ironically, we went from the hospital to the FastCare clinic where we took Jarred to get a throat culture. Positive for strep. In the midst of waiting for the prescription, Jarred walked next door to Menards to grab some paint. While I waitied on his medicine, I paid for the things I had at Shopko, and can you guess what I forgot to pick up on the way out of the store?

Just as we started to get back on the highway, Jarred asked if he could have his prescription. All I could offer was an “Ooooh no…” We turned back around and got the medicine. Meanwhile, our little guy snoozed peacefully through most of it. And now, I am so very glad the surgery is finally done.

After our little guy woke up from a good nap this afternoon, I sat on the bed with our baby. We’ve only had a few hours with his new and improved hearing, but my impression right now is that he is delighted. I sat talking to him on the bed, and he intently stared at my mouth moving, listening, and smiling. Usually he looks me in the eyes when I talk to him, but it was obvious he was trying to figure out the new sounds he heard. He looked ever so pleased to hear all the words coming out of his mommy’s mouth.

I can’t wait to see what develops over time. I’m going to flood that little boy with words to help make up for the months of not being able to hear as much.

With his surgery out of the way, it feels like we are ready to kick off a great summer. Over and over I feel the huge energy difference in myself between this summer and last year. I happened to look at the calendar from last year at this time (it’s easy with the 2016 calendar still hanging underneath this year’s), and I saw that last year at this time, we had a two-week old baby, I had a migraine for two days, I got mastitis that week, and he had an appointment for an ECG to check for heart conditions. Wow.

It’s a whole different world with a one-year-old. I have the energy and strength back to lug around 50 lb bags of chick feed, shovel out the shed to clean it out for the chicks, and till up a garden. That’s right, I have a new garden this year!! After five years here, I realized the place where I really want my garden is in the back yard, right under my kitchen window where I can look out and enjoy it countless times a day.

Two Saturdays ago, I borrowed a walk-behind tiller (thanks, David!) and made it happen. It was the first time I’d run a tiller, so I was pretty proud of it all. I deliberately made the garden small and manageable, about 8 x11. With the help of four big kids (and two little ones that helpfully napped) we went from grass to a fully planted garden in two and a half hours. Awesome. Ten days later, almost all of my seeds are up. I’m so excited for cucumbers, peas, beans, tomatoes, squash, lettuce, zucchini, flowers…all of it. I just love to see new life happening right before my eyes.

The biggest attraction for my kids? Seeds for giant pumpkins. The packet promises pumpkins weighing up to 100 pounds. Oh man! My oldest daughter just happens to weight exactly 100, so I had her curl up like a pumpkin on the ground to show how big those pumpkins just might grow. The other kids took turns trying to lift up the “pumpkin” and all of them were just giddy at the thought of growing pumpkins as big as their sister. We plan to just let all the vines spill over onto the lawn as much as they want. Oooh, I can’t wait for too see everything grow, either.

Surgery for ear tubes: check. Bring on the warm sunshine, kids playing outside, plants growing, and a baby that’s all ears for all of it. Happy summer to all of you!

Written June 6, 2017.

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Happy Birthday, Little Buddy!

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You know what’s even better than your baby’s first birthday? Your baby’s first birthday AND 65 new baby chicks arriving at your house on the same day!

Somehow a year flew by and our little boy turned one on Monday. A few days ago I looked back at his newborn pictures. Even though he’s still so little, at 24 pounds now he looks like such a big boy compared to the sweet little newborn he was last year at this time. In photos I see that soft newborn skin and fine fluff of hair, those tiny little fingers and I just get choked up about how sweet he was. I just love new babies, fresh from the oven. Looking back at those pictures, I also remember the worry, stress, and uncertainty that clouded that time, being taken by surprise when we learned he has Down syndrome. I didn’t know what to expect.

I wish I could go back and tell myself then to not worry. A year later, I feel much more of a peacefulness about his life. I don’t know the timeline of when he will check off each milestone, I don’t know all the answers, but I do know it will all be fine.

We have so much joy with him in our life. His big brother’s bedtime prayer on the night before his birthday was “thank you for blessing us with Lars.” We have a baby boy with an infectious smile and an easy-going personality. There’s so much excitement, joy, and love that surrounds him on a daily basis. On any given morning when I carry him downstairs, I ask if anyone would like to hold him while I start getting breakfast ready. Every time, three or four kids shout “I DO!” and then squabble over snuggling him. Lucky boy.

And what did we do to kick off this baby’s first birthday? Why, I hauled him to his big sister’s dentist appointment first thing in the morning, of course. And then we ran errands.That’s how you roll if you are child number six in the family. We got a few groceries (just a full cart, not a heaping cart) and had lunch.

After lunch, excitement mounted when we made a trip to Fleet Farm. I realize that may sound sarcastic, but I’m dead serious. Walking around in Fleet Farm always gives me a happy feeling, being surrounded by all the things you need for getting work done and living a good life. I love shopping in a store where the guy ahead of me in line bought a bag of walnuts and some teat dip. Today’s mission: get ready for our chicks.

Heading to the back corner of the store with the animal feed, I pushed a cart with my two-year-old girl, and my 11-year-old pushed a cart with my birthday boy. A bale of wood chips , a bag of chick feed, a red heat lamp bulb and we had two carts loaded and ready for our new chicks. By the time we walked out of the store, I had a heavy baby boy sleeping on my shoulder, so I used only one hand to push the cart loaded with chicken feed and a crabby toddler.

As cumbersome as that is, with the sun shining, a baby’s first birthday to celebrate, and chicks to pick up, life felt just about perfect. I desperately wanted to check out the greenhouse in the parking lot and pick up some flowers, too, but I restrained myself from adding another project to the day.

By the time we got to the Rushford feed store to pick up our chicks, we were well past the time that my two-year-old needed a nap. The drive from Winona to Rushford was pretty much one long toddler meltdown. All of that evaporated, though, with lifting the lid off of a box of baby chicks. It’s like having the magic and wonder of Christmas morning on an afternoon in May, with peeping tiny balls of yellow and brown fluff.

The rest of the afternoon and evening evaporated in a flurry of getting the chicks situated in their new home, making birthday supper and celebrating. It’s been four years since we’ve had a batch of chicks at our house, a lifetime in a kid’s world. Seeing the other kids get off of the school bus and discover a box full of peeping chicks was one of my favorite moments in a long time.
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With chilly evenings for the week I decided to keep the chicks cozy in an old stock tank in the side room of the barn. Lots of small eager hands helped line the stock tank with wood chips, help fill up the feeders, and help take each chick and individually dip their beak into water to give a first drink. Throughout the whole process, my mind was right back in the time four years ago when we got 110 chicks and my brother Mike and his family came out and helped us get the chicks settled. Mike’s been gone now for almost four years, but to me at that moment I had the comforting feeling like he was right here again as we repeated those same steps that we learned from him.

Just as we finished getting the last chick a drink and settled in, my mom and sister arrived for our little guy’s birthday supper. I was surprised to see them already, since it seemed pretty early in the afternoon, and then I realized it was already after 5:00. Time to switch gears to birthday mode. With a day in town and taking care of new chicks, we had a kitchen table full of groceries, the living room wasn’t picked up, and with the meal we added a bunch of new dishes to the melee, but the birthday celebration comes just the same.

While I cooked in the kitchen, our lucky birthday boy received Grandma’s full attention while she built towers of blocks for him to knock over. For supper we ate our little guy’s favorite, spaghetti and sauce. My oldest daughter, quite the baker, whipped up her own creation of a banana blueberry birthday cake after his favorite flavor of baby food. The cake was awesome.

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Our little buddy opened a few presents, including a swimming suit, which prompted my daughter’s wisecrack “Hey Mom, let’s call this his birthday suit!” and some fleece hand puppets –the very sweet creation of my six-year-old. We sang Happy Birthday a few times and he smeared cake all over everything. Bedtime came a little later than usual, and he went to bed a very tired, very loved little boy.

When all of the kids were finally in bed, I grabbed my umbrella and headed out with a flashlight to check on the chicks in the barn. They all looked cozy and warm in the glow of the red heat lamp, so all was well with all of the babies for the night. One baby turning a year, 65 babies one day old, and a good day all around. Happy birthday, little buddy. We love you!

Written May 23, 2017.

 

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.