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Guest Blogger Post – A Dad’s Perspective

by Maggie

Because it’s Father’s Day, I have invited my husband to write about our life from his perspective. I took the liberty of adding in a few pictures… and a few commas. 🙂 Enjoy!

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Four days ago I was asked to be a “guest blogger” for a post about Fathers’ Day. After some deliberation, I reluctantly accepted the invitation. The blog is really Maggie’s thing and I have never had the desire to contribute in the slightest. Needless to say I began this process by thinking I was doing her a favor by posting and now I realize she was doing me a favor by letting me think more deeply about what is so great about Father’s Day. Let’s start from the beginning…

When I was growing up, I remember going to a hardware store with my dad. As we walked into the store, I noted a bright orange sign that said “Buy one, get one FREE!” Being young, I said to my dad, “Hey, Dad, look! We can get something for free.” My dad knelt down, held both of my shoulders in his hands, and looking directly into my eyes, he responded with an even tone:

“Son, nothing is free.”

Of course, he was correct. Everything in this world costs money. It costs money to eat, it costs money to live, it even costs money to raise children. But this weekend reminded me of what is truly important in life and it had nothing to do with cost.

Every year for Fathers’ Day, Maggie plans a quick vacation with our family. We usually go to the Quad Cities, the area where Maggie and I attended college, to reminisce and walk the campus of Augustana. This year our trip was scheduled for 24 hours. We departed at 4 o’clock on Thursday afternoon and we arrived home on Friday at around the same time.

Two hours in the car felt like four. Apparently Ellie likes to hear herself talk and Tessa is not to be outdone, so she growled the entire time. When we arrived in the Quad Cities, we got Ellie some ice cream… which promptly ended up all over her clothes, face, and the ground. I had to admit I felt good for letting Ellie make a mess. Why not, right? We are on vacation and if she wants to dump ice cream all over her shirt, more power to her.

It wasn’t long before we arrived at the hotel and Ellie tested both beds to see which one was more “springy.” For a bit of extra fun, I took Ellie on a ride on the rolling luggage cart through the hotel. Ellie thought every second of the ride was hysterical. I enjoyed her laughter, but especially enjoyed all the strangers who walked past us and smiled. It was clear we were having too much fun breaking the rules.

That same night Ellie refused to fall asleep until 10:30 at night. She relentlessly declared across the hotel room, “I am still awake you guys!” and we had to keep reminding her it was time to go to sleep. Apparently she doesn’t care what I say (she is her mother’s child). On the one hand, I was annoyed that my daughter would not be quiet, but on the other hand, she was having so much fun she didn’t want to go to bed. She wasn’t rude, she was just excited… and I couldn’t keep a straight face when I scolded her for not going to sleep.

The next day we all went to the pool, the John Deere museum, a children’s museum, and lunch at one of my favorite restaurants in town. Ellie spent the day swimming, pretending to drive a tractor, and playing with a million toys without having to clean up.

If I had time, I could go through a million stories about each and every part of the day, but all I can tell you was that both of my daughters smiled for almost the entire twenty-four hour trip. Not only did they smile for the entire trip, I couldn’t help but enjoy the company of my family and all of the fun things we enjoyed. I laughed more times than I could remember and even though I was exhausted (which is the status quo), I just couldn’t bring myself to wimp out and not have fun with them.

My dad was right that nothing is free in this world. But that is the least of all the lessons he taught me. He taught me to take the time to stop and enjoy life. He taught me to not be concerned about meaningless trials and tribulations. Most of all, he taught me the biggest payoff of being a father is the time we spend with our children. Nothing is free in this world except for our time. The time we have to spend with our families is totally free and can lead to some of the most amazing and fulfilling memories.

When I look around and see all of the other fathers I know and respect immensely, they all have one thing in common: they take the time, no matter how things are going, to enjoy their children. I learned this because my dad put me first and it was rewarding for me, but now I see it was rewarding for him as well.

Being a father is never easy. Sometimes we wish our kids would give us a break. Sometimes we wish we could just get away for awhile. The reality is that we are not perfect and we don’t always focus on our kids the way we should. But we also need to remind ourselves how much we can be filled up with love just by spending time with our family. The sports on television don’t matter, the job doesn’t matter, the kind of car we drive doesn’t matter. The only thing that matters is the effort we put in to loving our families. We will see the results in how we live and how our kids live. This is not my advice, it is the advice of my dad, and for what it is worth, it has made all the difference in my life. I wish all of you a wonderful Fathers’ Day and I hope your twenty-four hours is as fun as mine!

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Tubes, Take 2

by Maggie

I think a lot of my readers are Facebook friends… but for those who aren’t, or those who are and want more details of today’s events…. here we go:

We are home after successful tube placement and bronchoscopy.

The morning was, as usual, not without it’s fair share of drama. We have a family history of some complications with general anesthesia. As the anesthesiologist explained, “it’s very rare that someone would have any type of reaction, but if they do, they usually die. So we’re going to go with a slightly less safe type of IV anesthesia that takes a little longer so that we don’t run the risk of the other reaction.”

Well, that’s comforting.

John was not able to be there today, so very thankfully, my mother-in-law came to keep me company… and to calm me down. She is awesome at chatting away the time and before I knew it, the doctor was back to let me know that Tessa was doing well.

So, the tubes are in and should fall out on their own in (hopefully) a year to 18 months. She doesn’t have to wear ear plugs unless she is in a lake or river, but I don’t see that being an issue for her. 🙂 The bronchoscopy didn’t show any abnormalities, which is good. This means that Tessa’s airways are formed correctly. She had a bit of redness on her vocal cords, which he explained could be from crying or reflux. He said that a swallow study would be a good follow-up to check out the mechanics of how she eats.

It took a little while for her to wake up following the procedure. One of our nurses told us that “people with Downs love their sleepy drugs!” I think some people might not like that kind of generalizing statement, but I am totally OK with it. 🙂

Tessa is in good spirits, happy to be reunited with her bottle, and is her happy self already. Ellie was thrilled to come home from daycare and find her sister back in the house again. She immediately requested to hold her, something that she almost never does, so I’ll wrap up with some sweet pictures of these two little buddies!

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Mommy and Ellie’s Day of Fun – Zoo Edition

by Maggie

When was the last time that you were so excited that you felt giddy?

For me, it was last night… err, this morning at about 1:00 am. I love that feeling!!

Even as a little kid sharing a room with my sister, I can remember “nights before” (before birthdays or vacations or other events) where I would lie awake thinking about how excited I was for what was coming next. I did this on the night before I got married. I did this on the night before she got married! I am trying to convince myself that she joined in on my “too excited to sleep” chatter… however, it’s more likely that I was just keeping her awake when she would just rather sleep and get on with it.

In any case, I was over the moon because Ellie and I had a special day planned for today… our first outing to the zoo! Every year, we sign up for a zoo membership and we have really enjoyed taking Ellie on excursions to visit the animals. This was my first time taking her on my own. The membership that we sign up for comes with some tickets to do things like take a trolley ride and see the Dolphin Show – things that John and I have never actually done with her. So this time, I made a promise to myself (and her!) that we would really live it up on this trip. And so I present pictures from Mommy and Ellie’s Day of Fun, the Zoo Edition:

First, we had breakfast at our favorite place. I wish I had taken a picture of the awesomeness that was my cornflake-crusted french toast with vanilla creme and strawberries. Instead, here is Ellie with her remnants:

When we got to the zoo (after taking the grand tour of the Western Chicago suburbs and hitting every. single. red. light.), we had to go on the trolley first thing. That Daniel Tiger and his trolley talk had really gotten this kiddo excited…

For some reason, Ellie was obsessed with this snake on the ceiling. She insisted on a picture and talked about “our baby snake” for about an hour.

After the trolley, we got into the first Dolphin Show of the day. I remember the Dolphin Show being a spectacular showcase of amazing jumps and tricks where everyone in the front got splashed and soaked and had a rip-roaring time. And, from a three-year-old’s perspective, it was all of those things. As an adult…. not so much.

We actually bought over-priced zoo food for lunch and had a picnic on the concrete because there were no tables in the shade within eyesight (balancing a tray full of food precariously on the handles of my stroller was not the brightest idea I ever had). Then we visited almost every animal and went to the souvenir shop (something I have never done in my entire life) to buy gifts for Tessa (a plastic bumble bee) and Daddy (paper made out of 100% elephant poop. No joke. Ellie picks out the best gifts!).

Here is Ellie as an otter, which is super cute:

After visiting some more animals again (Ellie insisted on another trip to the zebra because the first time, it was peeing and that was hilarious), we got Dippin’ Dots. I’m not sure she really enjoyed them so much… I think she was a little unsure how to handle the little pellets that kept falling into her lap… but I still think they are one of my favorite foods.

And here’s my obligatory “my kid is exhausted after a long day of (fill in the blank)” picture. Notice the zebra stuffed animal that she chose for herself. Thanks to the peeing that we witnessed, she can’t get enough zebra.

We had the most lovely day! If you have little kids, I hope you’ll take them, one at a time, to the zoo. At the very least, for the poo poo paper. $14.95 for elephant feces. Worth. every. penny.

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The First Day

by Maggie

I will never argue that teaching is the hardest profession. There are lots of people who do hard work in other jobs. I can’t easily make an argument that we need a summer more than anyone else… all I can say is that in my experience, the amount of stuff that we cram into a nine-month school year necessitates a long resting period. There are few days more thrilling than the first day of summer.

In our house, summer looks like an open stretch of road, full of possibilities. It’s sunny and vibrant and beautiful and free.

It doesn’t require an alarm to sound at 4:30 in the morning. It doesn’t mean melting into bed at 7:30 or making a 5:30 am run to Walmart because there is no lunch food in the house and Momma’s gotta eat. It’s getting up when the sun is already there to greet me and the ability to actually go for a walk. It’s kiddie pools and backyard fires (with s’mores!) and playtime and fun… fun that doesn’t have to squeeze into a two-hour time frame before dinner and tubbie and bedtime.

It means putting away the Snow Angel jammies (starting tonight.) and putting on flip flops and shorts and band-aids on skinned knees. It’s summer. It’s HERE!!!!!!!!!!!!

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5 months

by Maggie

Tessa has been five months for a little over a week. I have not been putting off this update, I’ve have just been waiting for some calm so that I could get all the information in one post.

And then I realized that there is no calm and decided to write it anyway.

At four months, we decided to schedule her ear tube surgery and bronchoscopy. Then, as is well documented on this blog, we had the pneumonia hospital visit and subsequent recovery. Now, we wait. Surgery is scheduled for June 5th, which puts it after school gets out (no time without pay, yay) and during the time that I was originally scheduled to travel to Costa Rica. Clearly, God was keeping me back for a reason.

Here is where we are at in terms of therapy:

Physical Therapy

Tessa is a rock star on her tummy. She is right at her age with her “tummy skills.” She is still wearing kinesio tape to help activate her muscles. I still think the idea of tape on the belly is kind of bizarre, but we’re going with it. She’s slightly more delayed with her sitting skills (about a month). We have had the chance to break out the Bumbo seat and while she can’t last it in for a long period of time, she does kind of like to see the world from a new perspective.

The therapist has recommended using cabinet liner to help stabilize her when she sits in the Bumbo or when we do “couch sitting,” which is when she sits using the corner of a couch for support. Creative, cheap, useful… It works.

Tessa’s new strange habit is this loud groaning sound that she makes regularly while tensing up all of her muscles. We’re glad that she’s practicing using the “right” muscles (the ones that flex), but the groan kind of freaks people out. My theory is that she just likes to hear her own voice (just like her mother).

Speech Therapy

Upright feeding is going great, hurray!! We are at a point where anyone who wants to can give her a bottle and that makes me a very happy momma. The next step is building up her core and mouth muscles to prep for solids. We hope to start with some cereals this summer, but need to make sure that her body is ready for the different textures. We do mouth stretches with her and use a little tool that looks like of like a solid straw with ridges on it to massage her gums and tongue. I’m happy with her progress here, but curious to see if the bronchoscopy will reveal anything interesting going on inside her throat.

Here, you can see how happy Tessa is to have to sit at the dinner table, but not get any cupcakes:

Developmental Therapy

So we’re seeing some more pronounced delays here, but the victory is that progress is happening. Tessa loves people. All people. All faces. All toys with faces. But things without faces? Not so much. She is reaching, which is good, but we need to get her hands to open up a little more. She can’t interact until she gets motivated to grab at things and explore, so the new development in developmental therapy is that it’s time to call in occupational therapy.

Sorry, that was a lot of terms.

Basically, Tessa’s occupation is to play, so we need to make sure she can do that effectively. We are going to get her started with some occupational therapy to help this progress… because while Ellie is a great example for Tessa, she does a lot more toy-swiping than toy-giving.

(this is the best of my failed attempt at a cute picture of these three)

Overall, we are joyful at the growth in both of our girls, prayerfully optimistic that surgery will go well, and ecstatic that our summer is finally here. Just three more days of class for me, another week for John and we will have lots of this…

and this…

and hopefully not so much of this… but I had to send some love to my husband (and dad) for fixing my car…

Welcome back summer, we’ve missed you.

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How Daddy Got His Fish Back

by Maggie

Neither John or I are very into swimming. This is why we were hesitantly delighted to find that Ellie adored the water. She would never learn to swim from either of her parents, but lessons! There could be lessons! The girl with two left feet could be an athlete! And in high school, the meets would be inside where I wouldn’t have to be cold or stand in the rain! And then she could be the next Missy Franklin! Olympics, here we come!

All of our hopes and dreams came crashing down about three months ago when Ellie decided that she loathed taking baths. Loathed isn’t even a strong enough word. Even hearing the word “bath” sent her into a terrible sobbing, screaming fit. For awhile, I just forced it. She’ll get over it, right? Suck it up, kid. No tears in this house.

It was (very) unsuccessful.

So, just like any rational parent, I decided to consult my dear friend, Dr. Google.

And then I started reading a lot of psychologists who said that the worst thing you can do is to forge through and make the kid “suck it up.” Oops. Another parenting fail. But when your child has hair down to their butt, bathing really isn’t an option. So I tried to make it more “fun!” I tried getting her into the big whirlpool tub with the jets (major, MAJOR mistake). We tried putting on swim suits and getting in with her. We tried sitting in the tub and letting her bathe us. We tried letting her take a bath in Tessa’s infant tub (now that was ridiculous). There were toys, so many toys. Old turtle rattles, new little boats picked out just for tub time, tub crayons, squirty little octopuses… those made the fits worse. She feared the drain and that all of us were going down into it.

This has not been the most joyful phase of my parenting career.

I write to you today with a new perspective, having traveled back from the Hell of Bathphobia. Here’s how:

1. We invested in some Crayola Color Drops AKA: Magic Protector Pills (Some parents frown upon the idea of imaginary sprays and potions. Desperation will change that perspective). Somehow, choosing the color of the bath made it less scary. We had just read Pinkalicious, so in a pink bath, we pretended to be the main character. I was still in the tub with her, but there were no tears.

2. To get me out of the tub, we started making lists. I have no idea where this idea came from, but suddenly, a list made the whole situation bearable. Just before the bath, we write out all the steps together:

Then, while the bath is going on, we cross them out.

We practice numbers, we are cheerful, I am not in the tub. It is glorious.

Don’t ask me why this works for her. I think it might be because she knows that she will survive The Drain because there is a next step. All I know is that if you find yourself in the middle of a torturous tub tantrum, a list might be your key to freedom. At the very least, it’s a tool to try.

The Fish is back, just in time for summer. And in plenty of time to train for the 2028 Olympics. I can already smell the gold…

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Imagination

by Maggie

Ellie lives in her own little world and we are just characters in the game. Lord help you if you wake her up from her occasional nap and call her Dora on a day when she is actually Doc McStuffins. I found myself in that situation late this afternoon.

It wasn’t pretty.

With no TV to distract us these days and John working late coaching track, Tessa and I have been at the mercy of Ellie’s imaginary play. Today, we were Doc McStuffins. Or, to be more specific, Ellie was Doc, Tessa was Stuffy (a goofy blue dinosaur), and I was Hallie (a chubby purple hippo with a southern accent. Lucky me!).

Tessa isn’t quite sure what just happened to her, but she’s glad it’s over. 🙂 (These last two pics were just too cute not to post!)

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The Back Row

by Maggie

My goodness, I love graduation. My squirrelly little freshmen who can’t sit still in Spanish One morph into goofy sophomores and sarcastic juniors and then suddenly they are walking back to their folding chair on the football field, diploma in hand, beaming like they won the lottery.

Every kid smiles at graduation. Every. Single. One. It’s lovely.

My charges were a group of 13 students, 10 boys and three girls (the kind of male/female ratio that I seem to be handed very frequently these days). We were the second-to-last row. I knew most of them pretty well. As we sat in the line-up room, they were sassy, but fun.

“Why can’t I have my cell phone? I want a selfie with the principal.”

“What if I trip on purpose? What if we all do? That’d be awesome.”

“Is this gonna take forever? I’m so done with this school.”

By the end, they were jubilant yet reserved. Sad it was over, thrilled at their accomplishment.

I love graduation.

Still, the ceremony tugged at my heartstrings more than usual this year. Because here I sat, in the second-to-last row, and quietly observed the back row… the row where our “Vocational Ed” Special Needs students were grouped together with their aides. The row where every child in the graduating class with Down syndrome was seated.

Not my child.

Most schools don’t seem to do Inclusion well… especially not high schools. We aren’t near school-age yet with Tessa and yet I already feel like I’m suiting up for battle with an education system that I am a part of. At the same time, I’m really annoyed. Annoyed that I have to suit up. Annoyed that in order for Tessa to have the same access to education that Ellie will get with no question, I have to fight people. That’s obnoxious.

Thankfully, I’ve never minded being a trailblazer for things I believe in. I’ve got some years to build up my armor and I’ll be ready.

Nobody puts my baby in a corner… or a back row… unless, of course, her alphabetical seat assignment puts her there.

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Home

by Maggie

We are home. 🙂

It has been 24 hours since we returned. Everyone under one roof.
Everyone (mostly) healthy.

We are so thankful for our nurses – Aida, Sheila, Jodi, Mary Ellen, and most especially, Jan. Jan, who was no-nonsense but lovingly devoted to taking care of our girl, who didn’t give anyone any chance to feel sorry for themselves, who calmed our nerves and got us home as fast as she could.

Here is life back to normal:

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Upward movement

by Maggie

In the Hunger Games of pinkeye, I am still winning.

However, much to the delight of my husband, I woke up this morning without a voice. Not just a little hoarseness… this is full-on, my-lips-are-moving-but-no-sound-comes-out laryngitis. So that’s fun.

I spent my day with Tessa as usual, while The Pinkeye Crew hung out at my mom’s house. John is the only one who is still technically contagious, but I’m trying not to take too many chances and am staying away as much as I can!

At the hospital, Tessa was much more herself. She was ready to talk and play and roll onto her belly… The wires weren’t quite ready for that rolling, but she was pretty amused by the tangled mess that she could create. While her personality is slow to emerge, we already feel like she might be very social and a bit dramatic. This morning, if I wasn’t standing where she could see me, she complained until I came back into sight. High maintenance. At least she’s feeling better!!

I am super thankful today for the company of one of my dearest friends, Ashley. She and I got through our first year of teaching together and have remained friends since then. Tessa adores her and so does the rest of my family! Not only did she come to see me and the girls, but once Ellie went home for a nap and Tessa was calm in her bed, Ashley took me out for a margarita. It was a much needed break!! And while it must have been hard for her to hear what I was saying 96% of the time, she’s a great conversationalist and it’s nice to have someone to vent to.

As far as an update on Tessa, she’s making upward progress! When I went back tonight to kiss her goodnight, she was on the regular flow oxygen! That’s the last level to clear before she won’t need it anymore. They took out her NG tube (feeding tube) this morning. Most importantly, her status was downgraded tonight to a regular pediatrics patient instead of a PICU (intensive care) patient. Yay!! The means she lost a couple more wires and is starting to require less monitoring. Great progress for one day!!

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Yo soy La Lay

adventures in family, faith, and Down syndrome

Guest Blogger Post – A Dad’s Perspective

Tubes, Take 2

Mommy and Ellie’s Day of Fun – Zoo Edition

The First Day

5 months

Imagination

The Back Row

Home

Upward movement

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