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World Down Syndrome Day – A day in the life

by Maggie

Last year at this time, with my just-barely three-month-old nestled in little bouncy seat beside me, I sat down to write about life with a little one with Down syndrome in celebration of World Down Syndrome Day. For as much as the children have grown in the past year, so little has changed.

I’ll be honest, this post about what life is like with a child with Down syndrome seems a little silly to me. I’ve been working on it for a week now, trying to find some spin, something interesting or relevant. Maybe it’s because she’s young, maybe it’s just because things aren’t really that different… we love our life and wouldn’t change a single, solitary aspect of it, but let’s be honest, it’s not exactly thrilling.

Our mornings still start early… I’m out the door by 5:40. We can usually hear Tessa starting to stir on the monitor by then, but we let her stay in bed until John is ready to let the chaos begin. We have also found that Ellie is a lot happier with life when she is woken up by Tessa’s babble rather than Daddy’s insistence that she get moving. On the weekends, we have breakfast together. Sundays, I make pancakes. Otherwise, Ellie mooches John’s oatmeal.

During the day, my kids go to our daycare provider while John and I work. Tessa has great motivation to keep up with the kids around her; she so loves (and is loved by) the other children. A couple of her therapists do her sessions there, otherwise she has them after I get done with school for the day at our house.

I pick the girls up in the afternoon and at home, Ellie watches The Pioneer Woman (every.day.) while Tessa plays and I finish up my work and check in with the mom groups that I am a part of through social media.

(I used to be pretty active in typical “mom” groups. As of late, that has become… challenging.)

99% of the time, the girls get along great. Just recently, we’re starting to witness the usual sibling annoyances:

https://www.youtube.com/watch?v=BTxjUW1SsUY

Around 4:30, Tessa makes her way to the garage door, where she sits and signs “Dad” until he walks in the door. We sit and eat dinner as a family every night. Ellie is the slowest eater on the planet. After dinner, there is almost always some kind of dancing.

https://youtu.be/VhPc0bjgTKA

Occasionally, we get the girls into the bath. We pretend to fight over who gets to put Ellie to bed while the other feeds Tessa and wrangles her into her pajamas. By 7:30, both girls are asleep, I’m mostly asleep, and John’s enjoying his quiet time on the couch.

I would not change a thing.

Every 24 hour period is a blessing. Every second that we get to spend loving each other is precious. Our family’s minutes and hours are not much different than yours. I hope you can see that, feel that, believe that… and include others with Down syndrome in your life right along side us and our little girl.

For more stories, visit adayinthelifewithdownsyndrome.com.

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3 Decades

by Maggie

A very special kind of countdown has started and I’m super excited about it!

(No, Mom and Mom-in-Law, I’m not pregnant.)

Today, I am celebrating the beginning of my 144-day “make fun of John because he is 30” extravaganza. I only get 144 days because of course, then I will be 30 also. But for now…. let the fun begin. 🙂

As I’m sitting here, he is telling me that he does not want a post in celebration of his birthday… which is fine, because this isn’t about that…. it’s just about him. I have done exactly what he told me. 😉

I had to laugh today, going through old pictures of him, because I was trying to find just one to share here in celebration of him. it’s impossible. I don’t know if there is just one picture that can really embody his accomplishments, his determination to provide for his family, his devotion to us and to the girls and to God. This is a remarkable man. And for all of the amazing things that he has worked so hard to provide for us, these are the things that I love the most:

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Signs of Spring

by Maggie

We waited in a line for the car wash today that was 10 cars long. 35 minutes, sipping my decaf iced coffee, listening to Ellie chatter in the backseat about how, now that she’s three, she’s brave in the car wash. When she was two, she tells me, it was too scary but now, well, now three means that she isn’t afraid anymore.

“Mom? Maddie’s mom died and now she lives with God,” she tells me. “And I’m going die too, someday. And who else lives with God?”

I took a long sip after that question. Seven cars in front of us still. I guess we’re having that conversation. Again.

Winters are harsh in Chicago. The wind chill, the salt on the roads… But now, there is a palpable energy in the air. SPRING. It’s 30 degrees warmer today than we have felt in months. There is sunshine. There are puddles. I’m sitting by the back door watching Ellie play outside. She’s still wearing a coat and picking up what is left of the (filthy) snow, but when her cabin fever got to be too much, it didn’t take me 20 minutes to bundle her up enough to send her out the door.

John, too, is suddenly out of the winter funk. As soon as he saw a 50 in the forecast, his winter doldrums switch flipped off. He’s barely cognizant of his 30th birthday coming up in a couple of days. He is, quite literally, ecstatic. He’s always been this way.

I’m more cautious with my optimism than the rest of our little family. It has been a long winter and I’m not convinced that she won’t rear her ugly head yet again. But still, I’ll wash the road salt off the car and pack away a few of the heaviest sweaters, hopeful that we have turned the corner for good.

For what it’s worth, I’m thankful for the winter. It makes the spring so much more special. Such is life.

One year ago…

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Inside and out

by Maggie

Look, I’m not a fan of the cold. I’m sure someone could make the case that I’m really missing out by not playing with my kids in the snow, but really, I’m just fine with taking the pictures and making hot chocolate (recipe at the end).

Plus, on the inside, we have just as much fun.

At 6:15, Ellie woke up, looked outside and gasped. “It’s Christmas!” she exclaimed.

Well no, not quite. It was still dark outside and she was desperate to head out. I managed to keep her calm until precisely 7:22 am. Then I gave up. When I told John I was sending her out, he look at me with giant puppy-dog eyes… “Can I go out, too??”

I bought this snowsuit a little too big last year and made it work. This year, it’s a little too small, but still works. Two years out of one snow suit? That’s a parenting WIN in this house!

Dora umbrella is back!

The first trek out was considerably calmer than the afternoon madness.

A kid in ski goggles… too much.

Blizzard Conditions… no kidding.

She doesn’t have the attention span to build a fort, so this will do.

https://www.youtube.com/watch?v=1X_gcWs1Ph4

And on the inside, I got to enjoy… this:

I win. 🙂

Our favorite hot chocolate recipe

1 cup milk

1 tablespoon sugar

1.5 tablespoons Hershey’s unsweetened cocoa powder

1 handful of semi-sweet chocolate chips

Throw everything into a pot, heat it until the chocolate is melted, serve in a mug with marshmallows. All these ingredient amounts are total approximations, so good luck. 😉

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Life, lately

by Maggie

It’s been difficult for me to sit down and write these days. Not for lack of words, I assure you, but simply for an odd restlessness that had settled into my brain. (Hello, 3 am wake ups, can we be done now?) We’ve had a lot of serious discussion happening in our home about our future and those talks have mostly drained my ability to look at computer screen and write it out.

I realize as I re-read what I just wrote that I sound terribly melancholy. Rest assured, I am not. As a matter of fact, especially this weekend, I have had a rush of peace with the whole idea of our new family adventure. We’re moving forward. It’s all good.

Very quickly After, we knew the time would come that we would have to move. For more reasons than I could possibly go into (not the least of which being the cramped quarters of a home we meant to move out of 3 years ago), it’s time now. And because of the fabulous fact that we bought our house at the second-worst possible time in recent history, our move is going to involve a stint living at home with Momma and Daddy Dub.

I didn’t expect to spend the summer of my 30th birthday moving back in with my mom and dad. Then again, I didn’t expect a lot of the twists and turns that I’ve taken in life, so we’re rolling with it. We don’t necessarily have a timeline for selling our current place, which is nice because there isn’t much of a rush to pack it up. We’ve started, but it’s not all-consuming. True to my usual manner of business, I’ve got a few spreadsheets rolling to organize us. No major task in our family is complete with out some help from Microsoft Excel!!

The kids are thriving lately. Tessa’s annual meeting went really well. The therapists have been really impressed with her progress and I was able to push for a specific goal that I think will target her communication skills. We (very necessarily) have focused a lot on eating in the first year. Now that she’s sitting, beginning to sign (yay!) and beginning to have more feelings and needs, I’m looking forward to working more on communication during our sessions. We will continue to have OT, PT, Speech, and Developmental therapy each one time a week. She’ll start wearing a Spio suit soon, which looks kinda like the clothes you wear for scuba diving if you ask me (though it is sleeveless and shorts, not pants). You should know that we don’t live in a constant state of therapy in our house – that really, truly, most of Tessa’s “therapy” comes from trying to get the toys back that Ellie steals from her.

Just before we had our meeting, I ran across a quote on the National Down Syndrome Society‘s website that was a lightbulb moment for me. On the surface, I knew this, but the words struck me in such a way that I had a productive shift in mindset. It reads:

The goal of physical therapy for these children is not to accelerate the rate of their development, as is often presumed, but to facilitate the development of optimal movement patterns. This means that over the long term, you want to help the child develop good posture, proper foot alignment, an efficient walking pattern, and a good physical foundation for exercise throughout life.

Ok, duh. I know this. But, for whatever reason, the statement that Tessa is 48% delayed in her locomotion (moving) skills hasn’t phased me simply because of this. Because suddenly, the delay isn’t about me not putting her hip helpers on her for three days in a row. She should wear them, yes, but it’s not about me holding her back, but more about teaching her to do it correctly. Weird how things can strike you like that.

I look forward to telling you about my older child’s awesome development soon… at a time when she isn’t hanging off of my arm crying that I put too much milk in her cup. Ah life… I wouldn’t have it any other way.

A picture of Ellie at hour 10 of an 11-hour Road Trip, just because. She was 13 months at the time of this picture (same age as Tessa today).

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Basics, Year Two

by Maggie

One year ago today, fresh off our rocket launch into the world of Down syndrome, we (mostly I) started writing. We began with the basics. Today, an update:

This is what you should know about my family:

John – Husband. Age at this writing, just shy of 30. Married almost 6 years. Dad, teacher, coach, Fantasy Football Commissioner Extraordinaire. My best friend and favorite person on the planet. Will give you the shirt off his back and then worry that he could have given you more if he had just thought of it at the time.

Ellie – Child #1, girl. Age at this writing, 3.5 years. Matter-of-fact, sweet, unapologetic, bossy. Self-described “goofball knucklehead bum.” Still doesn’t color WITH you, but rather tells you what to color and expects you to do as you are told. Uses a lot of big, adult words and phrases with perfect comedic timing.

Tessa – Child #2, girl. Age at this writing, 13 months. Active, sweet, chatty in small groups. Likes crawling around the house, dumping over bins of toys, and looking in the mirror. Dislikes being left alone, especially at bedtime. Her smile will melt even the coldest heart… as will her pout. Has Down syndrome.

Me (Maggie) – Age at this writing, 29 (gulp.) Educator (Division Chair/Spanish teacher/whatever else they need me to do). Personality? See Ellie’s description above. She is me, in toddler form (except for the whole “knucklehead bum” thing). I love inspirational quotes, chocolate, and margaritas. I write for my family and my kids – but I’m happy to take anyone along for the ride who wants to join us.

Year two… let’s go!

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Celebrations – A Photo Dump

by Maggie

You’ll have to excuse my long absence – I’ve been busy partying.

No, seriously. We can’t stop. It is bordering on over-the-top. I love it.

Two weeks ago, I (conveniently) enlisted my family members to write about Tessa’s birth. While they did that, I camped out in my kitchen and baked for 6 days straight. Cookies for neighbors who decorated our shared walkway with twinkly Christmas lights, goodie bags for my amazing department at school with some of the most dedicated, hardworking teachers around, pudding ‘cupcakes’ for Miss Tessa’s first birthday party… and then chicken chili and posole and black bean salsa for the party. My bakeware was tired. My oven was tired. My feet were tired. But the party was just getting started.

Saturday, we celebrated Tessa’s first birthday.

What the heck is this hat, Mom???

Oh, there’s cake involved? Well, alright then.

Group pictures are a challenge… Especially when Mama Bear insists that all party-goers must wear hats.

And John insisted I take a picture of myself in the hat and “photoshop” myself in. And since I don’t know anything about photoshop, I’m just sharing it here.

Sunday, we took a break. But only because I had a migraine (and John had to finish his Christmas shopping).

Monday, in the absence of snow, we celebrated rain.

Tessa and I stayed inside, where it was warm and dry. 🙂

Tuesday, there was a new addition to our family. Welcome, Baby Tony, and congrats to my brother and his lovely wife.

Wednesday, our Christmas Eve celebration with Oma and Papa (John’s parents) included a Happy Birthday Jesus cake, decorated by our own little cake boss.

We also got ready for Santa. Ellie read some books and left cookies by the fireplace, which was actually an amazing feat because Ellie is terrified of the big guy in red.

The following pictures are blurry because our scared-y cat kept running away. The idea of a creepy stranger breaking into the house to deliver anything, even a Mermaid Barbie, was horrifying.

Get me outta here!!

On Thursday, Christmas was just plain lovely…

Ellie says, “Ack!! Santa made a mess on the fireplace!!” Also, there was no snow in Chicago for Christmas,so I’m not sure how Santa left snowprints, but the little ones didn’t catch that little blunder.

Where is everyone?? I want to open presents!!

Grapefruits with my dad – an annual tradition…

Until dinner, when all of the children had had enough and all of the adults had had enough. There were lots of (toddler) tears at the dinner table, so naturally, there were plenty of adult beverages to get us through as well.

On Friday, we ditched our kiddos at my parents’ house and celebrated the birthdays of John’s very best friends. It’s a big year for us… The Big Three Oh. You know we’re getting old when the main topic of conversation at the bar table is how the live band is too loud…. 😉

Saturday was the big, extended family celebration for Christmas and a little white elephant exchange. I came home with a little ice cream maker (which, for the record, doesn’t work. At. All.)

Group child pictures… there are 30 on my phone and these are the best two… crazy kids.

White elephant fun…

Queen Ellie and King George

How we knew the night needed to be over…

Sunday’s celebration was the end of a painful Bears season. And because we have heard “Santa Claus is Coming to Town” far, far too many times (see Ellie’s video here), the Christmas decorations came down. It was a week earlier than usual, but really, we had to stop the madness. I have never been more thankful to hear my child sing Let it Go. It was that bad.

We let Ellie feed Tessa… they both loved it.

We wrapped up ten days of celebrating today with a visit from one of my dearest friends and her family.

So now, it’s December 30th and we’re just kind of lounging. Tomorrow for New Years Eve, I think we’ll do…. nothing.

Happy Holidays!!

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Milestone madness

by Maggie

I swear to you, Tessa comprehends every single thing I say to her therapists. Just as soon as I tell them that she is struggling with anything, she masters the skill and I end up looking a little silly.

Tuesday, our PT and her supervisor came for her weekly session and I had an extensive list for them. I expressed that I was still concerned about her refusal to use her left hand. I shared that she was sort of sitting, and sort of getting into her sitting position from laying down, but that she would not lift her left hand.

As of Friday, we have a sitter. And she’s a sitter who can get herself into a sitting position all by herself. And while she is there, she can play with toys!

I also vented a little about how I have to change the way I laugh because every time I laugh loudly (which is often), she cries. She doesn’t cry when anyone else laughs and I’ve been starting to get more than a little dismayed at being the sole cause of my child’s tears.

Since Tuesday, we have not had even one meltdown.

And, the icing on the cake is that our Little Miss started clapping yesterday. I didn’t even complain about that one yet! 😉 It’s very quiet and sporadic, but it is really happening.

I wonder if I start complaining that she can’t change her own diapers, will she pick that up right away??

Needless to say, it has been a week full of Tessa milestones. This will be our first week of four-days-a-week therapy, along with John’s last day of grad school, his graduation, two evening service projects with my National Honor Society kids, and the usual chaos that comes with the end of the semester for two teachers. We’ll see you on the other side…

And now, cuteness:

family Tessa

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Happy birthday, Dad!

by Maggie

In honor of my dad’s 55th birthday, I present 55 things I’ve learned from the guy who (along with my mom) raised me. He never reads this blog… but maybe this time, he will.

1. Learn everything you can.
2. Provide for your family. Work hard.
3. Get dressed every day.
4. And for heaven’s sake, wear shoes. (We grew up in an old home that was almost always under construction, so walking around without shoes was a safety hazard)
5. Serve others.
6. Go to church.
7. Take calculated risks. When I was a little baby, we moved to Paraguay, South America for a little while. Random, I know. But sometimes, you have to do these kinds of things.
8. Eat healthy – food is fuel. (Especially oatmeal) My dad eats oatmeal every day. With raisins. And he’ll offer you a bowl, too, if you come for a visit. Only Ellie ever takes him up on it anymore.
9. When you go to a museum, read everything.
10. Exercise. Like, every day.
11. Travel, but don’t be extravagant about it.
12. Read the newspaper.
13. Get all the juice out of the grapefruit.

14. Use tape when painting.
15. Always find the best way to do things.
16. Change your own oil.
17. Cherish family and friends.

18. Give out the good candy on Halloween.
19. Take care of the ill and elderly. Take them out to lunch. Visit them when they are sick. Listen to their stories.
20. Charleston chews taste best frozen.
21. Always have enough beer on hand for a small party.
22. Never mind the GPS, use an atlas. Every car should have one.
23. When mom is gone, you can survive on tuna fish, hot dogs, and baked beans.
24. Falling asleep in front of the TV is in our genes.
25. Rinse out your recyclables before you put them in the bin.
26. Sometimes, it’s easiest to clean a baby’s poopy butt with a hose.
27. Braiding hair can be a three-man job My sister and I had excessively long hair as children and when my mom was gone, we would help Dad braid it. Each of us took a chunk of the hair and away we went!
28. Self-propelled lawnmowers are for the weak.
29. Always be a good host (and throw one hell of a party while you’re at it).

30. Don’t speed. (Especially when driving a golf cart)
31. Invest in your community. You’re never too young to join the historical society!
32. Make lists, on post-it notes if possible.
33. Go to the doctor on a regular basis. Get your cholesterol checked, have a physical, listen to your doctor, take your vitamins.
34. Give. Give time, give money, give support.
35. Do your best in school.
36. Save your money.
37. You’re never too old to enjoy a children’s museum.

38. Save your salad dressing containers. They make excellent containers for nuts and bolts, as well as other random household objects.
39. Wear gloves. And a hat. And boots.
40. When it snows, shovel often…
41. But also stop to build a snowman.
42. Always seize the opportunity to see your favorite bands when they come to town (especially as they get old).
43. Speak little, but say lots.
44. Watch PBS.
45. Get down on the floor and play with the grandbabies!

46. Save your receipts. ALL of them.
47. Log your gas mileage. (Full disclosure: I’ve learned this, but I don’t do this. However, I have at least one sibling who carries on the tradition.)
48. Eating the same meal for lunch every day is efficient.
49. Why buy an expensive picnic table when you can make one in your garage for less money?? And that goes for a lot of things. Be handy, make your own stuff when possible. Be a fixer.
50. If they knock down your mailbox, just build another one. A metaphor for life, perhaps?
51. Mustaches. Not a good look.

52. Write thank-you notes.
53. Insist that others do the right thing.
54. When the work is done and the time is right, take a break and let loose.

55. Practice makes perfect.

family

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November, in a nutshell

by Maggie

I cannot believe that we are almost to the end of John’s Master’s Degree program. He and I embarked on our journey of earning our degrees when Ellie was 6 months old. I finished 4 days before Tessa was born. In less than a week, John will join the club. He tells me that, at 67 pages, he is done writing and that all he has left are some citations (which, at this point, I’d really like to just do for him so that it can just be done, but of course, I won’t, because playing with Tessa and Ellie is more fun than researching APA Style). Craziness (and crankiness) hit their highest point last week and we’re coasting into the finish line now… Here are some pictures of life lately…

Did I post this yet? I can’t remember, but it’s worth repeating anyway..

Trying to stay warm in our most recent snap of cold weather: Tessa loves to play “sooooo big!” We celebrated my nephew’s second birthday… this is my sister, sister-in-law, and I with our kiddos… Sticking out our tongues in solidarity with Tessa 🙂 So serious today… A little happier in this one. 🙂 The media center at my school is having a “Shelfie” contest… Here’s our entry… We put up our Christmas decorations a little early (sorry, Mom) and Ellie decided that Baby Jesus needed a check-up from our dear friend Doc McStuffins. Holding her own bottle is super hard work!! Sister love. ❤