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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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Brain Power

by Maggie

John said he wanted me to write something today… that he had checked the blog and was disappointed that I hadn’t posted in a couple of days. It’s a push that I needed. Truthfully, I have had this post rolling around in my brain for some time, but I have feared sitting down to write it. This isn’t pretty.

You see, I’m a smart person. I earned really good grades in high school and college, high test scores, all that jazz. I have a Master’s degree that I worked really hard at. I’ve always valued and appreciated the kind of intelligence that gets measured in schools. A lot. And now, I’m in trouble for it.

How often are others disregarded or disrespected because of a lack of intelligence?? And now, it’s making my brain spin. It’s uncomfortable. More than uncomfortable… it makes me hurt.

I’m not going to put Tessa into a box, but statistically, we can guess that school will be a struggle for her. We can guess that she might not take Honors-level courses. She probably won’t study law or medicine. I won’t say never, but statistically, you know…

Sometimes, people in the world are going to have a hard time valuing her and her contributions because somehow, we’re living in a society that is really impressed by how “smart” a person is. And rather than loving on someone who needs more help, we berate them. We make or read and laugh at terrible internet memes about them – not always people with special needs, but people who do silly things or people who talk or act differently than what we have deemed “the norm.” We put those people at the end of our jokes. We don’t use the “r-word,” but we mock stupidity, burger-flipping, garbage-collecting. We say things like “let’s face it, not all kids are going to college” or “he’s not the brightest crayon in the box” or “someone has to make my fries.” In the worst of scenarios, we don’t even allow them to live.

All those comments are now personal. They all sting.

Someday, someone will say something like that about my little girl.

I’m trying not to be overly sensitive. I’m really pretty good at letting things roll off my shoulders. I see a lot of value in all the different ways that people contribute to our society and I know that others do, too. I know that a lot of people will really love my daughter and value and appreciate her while still making jokes about these things. They aren’t bad people at all.

We just need more love, encouragement, support, kindness, compassion.

I’m working on it.

Language and Feelings

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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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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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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Flip Flops

by Maggie

One thing that I have noticed now, as the mom of a child with special needs, is the tummy flip-flops.

You know how sometimes, people say things or do things that cause a split second, literal gut reaction? Like when you see a cup of water about to fall over and you get a little flutter? Well, that happens to me more often now than it used to. A lot more. And for the silliest stuff.

Take for example, the palm-reading infographic that I came across on my Pinterest board today. I was looking through my pins for something related to animals to use with my Spanish 2 kids and found this:

Leer la mano: A fun activity for practicing descriptions! (tiempo presente) (ser) - Activity description in blog post

You don’t have to know Spanish to tell that it’s a “cheat sheet” to reading a palm… which is something I don’t believe in anyway… but that’s beside the point. So, I’m looking at this infographic and suddenly, I remember Tessa’s straight little palmar crease (the marker that I studied and studied in the NICU) and I get a little flutter that says “Hey! Her palm is different! She probably can’t get her palm read! Can she??” And it’s not a good or bad or sad reaction, it just is.

Here are some other flip-flop moments:

-Listening to a mom tell me that her child would never get into college if she wasn’t selected for National Honor Society

-Any time I walk past a Special Ed teacher or the Vocational Ed classrooms

-Checking the “disabled” box for Tessa on our insurance forms

-Hearing kids called each other “dumb” or “stupid”

-Any mention of college savings plans.

Is this crazy?? A part of me thinks that I might be crazy, but the more rational side says that there is no way I’m alone in these sudden changes in perspective. I’m not bogged down by the feelings, they don’t upset me at all. They are just… there. Kind of like Down syndrome. It just is.

But if anyone else wants to tell me that they deal with the same thing, I’d love to hear about it. 😉

Uncategorized

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Special Needs Mom Law #2

by Maggie

So I guess I fit into the category of a Special Needs Mom now, though I’m not exactly sure what that means. So much of Tessa’s care seems similar to Ellie’s. Slower, perhaps, but the same.

Nevermind that whole week we just spent in the PICU, of course.

Still, after I told you all about my fear of Mom Jeans, I’m trying to put some goals in writing to maintain… maintain what? I don’t know. But as my blog friend Jill (and fellow Ds momma) put it, we are trying to avoid being those unfashionably fiery and crazy Special Needs Moms in our nightmares. I’m pretty sure that fiery and crazy is gonna happen sometimes, but we plan to do it without looking and feeling like a wreck. 🙂

My Special Needs Mom Law #1 is “Put your own oxygen mask on first.” Thanks to Beth, our NICU social worker for that one. No mom jeans allowed. No laundry on a Friday Night unless we’re going on vacation the next day. My Law #2 is “Celebrate the typical children, too.”

My Ellie Bean is bright and fun and fabulous… and she does some really awesome things! I fear minimizing her accomplishments because I know that Tessa’s won’t come as easily. But I need her to feel important, special, and loved just as much as her sister. And so I present to you Ellie’s milestone of the week:

That’s her name!! She can write her name!! We had been playing a lot with the Writing Wizard iPhone app, but I had not seen her skills transferred to paper. My mom showed me that she could write the letters with a marker last week, but I really needed to see it for myself. So we pulled out her little whiteboard this morning and she showed me. I’m so proud. 🙂

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Priorities

by Maggie

Do you know what I’m really afraid of?

Mom jeans.

High waisted to hold in the leftover baby pooch, slim around the ankles with white tennis shoes. Or, Heaven forbid, the “capri” variety with socks and a pair of New Balance….

No. Not a good look. For anyone.

I know, I know, I’ve probably offended someone out there who loves their mom jeans. Or maybe someone doesn’t care about how they look and thinks I’m silly for even going there.

It’s not about the jeans, though. Not exactly. It’s more about me. Not my body (thank you, Weight Watchers app for checking in again today after my week from Hell. No, I’m still not going to weigh myself), not my fashion, just me.

The back story is this: Long before we even thought about Tessa, I began planning a student trip to Costa Rica with some colleagues. When we set our June, 2014 travel date, John and I were planning to have our second child about a year before the trip.

We all know how much God loves our plans.

Instead of our April 2013 baby, we got Tessa in late December. And cautiously, John agreed that she would be old enough in June for him to take care of both girls on his own for nine full days.

Flash forward to now, about a month before departure, and I had to back out of the trip. Aside from the financial aspect, there was a strong feeling that until Tessa is just a little healthier, stronger, more self sufficient, I need to be available… at least in the same country.

I am totally at peace with this decision. Of course, who doesn’t want to go gallivanting around a beautiful, exotic cloud forest, even if it is with a bunch of 17-year-olds?? Sad, yes, but I know this is best for us and what we can afford financially and emotionally. But it has me thinking about the “mom jeans.”

Because what if this snowballs? “No trip” turns into putting off a manicure or not getting Happy Hour wine with a friend so that I can be home with the kids… Then I stop putting on make-up every day and hair styling becomes a distant memory and then all the sudden I’m sitting on the couch in my mom jeans and old Kelly Clarkson t-shirt watching Shark Tank on a Friday night and I’m planning my weekend of chores instead of going on a date with my husband or taking a bubble bath.

It’s not the mom jeans. It’s the idea of life in mom jeans. It’s the idea of not taking a hour in the evening to read a book or catch up on Sister Wives… Or not finding a way to prioritize my own exercise routine…. Or not having enough energy to make sure that I haven’t created some awful outfit combination of stripes and polka dots while getting ready for work. That is my fear. Of not “putting on my oxygen mask first” like our NICU social worker used to always tell us.

John says the transition from zero kids to one was way more difficult than one to two. I beg to differ.

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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: