Uncategorized | Yo soy La Lay

It’s time for preschool, take one

by Maggie

I am a blubbering mess of tears.

My eldest child has been in day care since she was 7 weeks old, and yet, today, I am a wreck.

When did this little peanut get to be old enough for school??

I will tell you right now that I fully understand that my feelings are totally normal and that yes, she will do great at her new school with her new life, but still. Preschool is kind of a Big Deal.

Being the mediocre mom that I am (Kidding! Kind of.), I am letting her dad take the morning off to bring her to school for the first time. I’ll be honest, I don’t think I can do it. I never ever wanted to be a stay at home mom, but have still refused to do any drop-off at daycare. Tomorrow’s preschool send-off is no different.

(Let’s not even talk about how my first payment bounced because of our stolen debit card and I had to interrupt John’s workout for him to rush over and pay our balance or they wouldn’t let her in. Having it all together is not in my skill set right now.)

Tonight, I packed her little backpack with some extra clothes and her folder. I packed her a healthy snack (pretzels…. and one pink frosted animal cracker because I’m just kind of like that) and I wrote her a little note on a napkin, which of course she can’t read, but I hope someone will help her. And all morning, I’ll probably be completely unproductive and pray that my husband gets her there on time and that she remembers to tell people her name and doesn’t get in trouble for talking about poop.

Off on her new little adventure she goes.

Will someone pass me a Kleenex and some waterproof mascara?

Uncategorized

1 Comment »

In appreciation of just showing up

by Maggie

In my own process of navigating our Down syndrome diagnosis, I have kind of, for better or worse, made it all about me.

From the moment I learned that there were people who cried when they learned the news about Tessa, I essentially said to hell with their feelings, they don’t get to feel that way, she’s my kid. I’m content and they had better damn well be content too.

And away we went.

I could go on for a long time about whether this was the right choice or not. The reality is that we all get to have feelings. And, perhaps more importantly, our feelings are our reality. Accepting, living with, even enjoying a world with Down syndrome is challenging for some people. It may still be a challenge for some of my closest family and friends.

This is a note of appreciation, from me to all of you. Thank you. Regardless of your feelings or your place in the acceptance process, you show up. Every time.

I remember that for a couple of months, it was very jolting for me to interact with older teens and adults with Down syndrome. I’m sure there are a lot of reasons for this… but mostly, I was afraid of acting the wrong way, of trying to be normal, but maybe coming across as not normal… Afraid of saying the wrong thing or looking the wrong way or God knows what else.

I am sure that this is a challenge that my family sometimes faces. But it doesn’t stop them from showing up.

I had this moment of clarity and deep gratitude last Saturday morning… One Friday per month, our local group puts on a Family Friday event where kids and their siblings get to run free in a daycare facility while the parents chat. It’s the highlight of our month. 😀 This month, John’s sister and her family were in town and we asked them to join us for Family Friday. Without hesitation, brand new baby in tow, they were in.

There are a million great excuses that they could have used to duck out. Instead, they ventured into our community and got a little more cozy with Down syndrome.

I cannot tell you how much it means to us when friends and family just jump on board.

There are so many other examples of this. Team Tessa and our amazing friends who raise money for our group. The friends and family who come and hang out in our UPS for DownS tent on race day. The willingness to be a part of things that help us connect to a community… The acceptance of Tessa as just plain Tessa, with or without an extra chromosome.

There is no greater gift that can be given to our family than to just show up. Thank you all for doing that, time and time again.

Uncategorized

1 Comment »

Dad Sabotage

by Maggie

It is an annual tradition of mine to kidnap John around Father’s Day and take him (and the girls) out to the Quad Cities, where we met and attended college. He never really knows when it is coming and this year, we got him good.

We have quite a few trips coming up in September and October and, given that is it now practically August and we hadn’t gone yet, he thought it was going to be an off year. This is why, when I told him that it was time to go shampoo the carpets at our townhouse and asked him to please let me drive so that he could call his mom, he didn’t bat an eye. Then, I asked him to open the glove box for some gum and he found this:

He knew. Inside the card, a terrible little poem that I wrote on a whim, telling him that we were off on a little journey:

It’s horribly written, I know. You can only write so well in the grocery store parking lot with a four-year-old asking 47 questions a minute in the back seat.

In any case, he was over the moon excited. And thus, our 36-hour whirlwind trip began.

I love this.

We ate dinner in one of our favorite QCA restaurants and went swimming in the hotel pool. Tessa loved it, Ellie was totally freaked out by the depth of the water.

After swimming, Whitey’s Ice Cream, another must-have when we visit what feels like our second home…

Where the heck is my ice cream, Dad??

After ice cream, it was time to get the children in bed, so back to the hotel we went. It’s always a curious thing, finding a way to stay awake and chat as adults while sharing a hotel room with the children. This year, John tried putting on episodes of Everybody Loves Raymond, but after a couple of references to testicles and a vampire commercial, we thought maybe we should try the quiet reading time method. After about five minutes, we got a lecture from Ellie.

“Guys, no lights, no TV. It’s time for bed. Come on, let’s go, lights out.”

Alright then.

In the morning, we visited Jimmy’s Pancake House for the most delicious pancakes that we have ever eaten. We come here every time we visit the QCA and are never disappointed. This was the first time that we had brought the girls with us. Tessa was hammin’ it up with everyone around her. The waitresses all came over to say hello and at the end of the meal, our waitress asked if she could take her to meet some of the other staff. It’s a small place and we have had this waitress a few times, so since Tessa was ok with it, we let her go. She was high-fivin’ everyone she met! Hilarious. I asked Ellie (who was just a little bummed that she didn’t get paraded around) if she thought Tessa was being a ham and she said “No, she’s not a ham. She’s a lover. She just loves everyone!!”

Also, I’m not sure if you knew this or not, but if your kids are starving, jelly packets make a great appetizer. Just FYI.

No visit to the Quad Cities is complete without a visit to the Family Museum… as long as the kids are with us, that is. 🙂 It’s one of the best children’s museums that we have visited, mostly because it’s small enough to let the kids do their thing and they can actually interact with all of the exhibits without being overrun by 50,000 people.

They have added a really neat area that is designed for crawlers and new walkers. Tessa loved it and got a lot of PT practice that I’m sure her therapists would appreciate. Personally, I appreciated the time to just sit and watch her safely crawl around and explore.

The real reason that we love the Quad Cities is our emotional tie to Augustana. It’s a small school – and graduates of Augie are sickeningly devoted to our alma mater. We can’t help it, it’s just a lovely place to be.

We also visited the John Deere Tractor Museum…

And then Ellie let us know that it was time to go home.

See you next time, Quad Cities. We can’t wait to come back!

Uncategorized

1 Comment »

Finding a place in the Land of Mom

by Maggie

I am slightly envious of the moms who got to mother before the Internet age. I don’t know what it was like back then, but it feels like finding a niche now must be far more complicated than it used to be.

Did so many styles of family life exist before the Internet?? And, perhaps more importantly, are there any moms out there who don’t think about mothering much at all?? Most of the time, that’s where I am at – I mother based on instincts, not thinking much about it, doing what keeps the family moving forward.

I feel like all the moms around me have a style, but somehow, I’m lacking. They are gentle moms or tiger moms or organic, chemical free moms, or moms that love Lysol. Pinterest moms, soccer moms, dance moms, CEO moms, hyper-anxious moms, free-range moms, helicopter moms, non-vaxxers, bed-sharers, formula feeders, homeschoolers…. And I’m just over here trying to keep up with the laundry.

Sanity ended 4 years ago, my friends.

The world of parenting a child with special needs, and then the subset of parenting a child with Down syndrome, comes with its own little mom-cliques. We have the supplementing moms, the inclusion army, the self-contained special Ed advocates, a whole new category of babywearing mommas, pro-therapy, anti-therapy, diet restricters, moms who still love Kraft Mac and Cheese. There are moms who want to ‘fix’ the issues that their kiddos have and moms who want to let them be just as they are and to hell with society and their silly standards for acceptable behavior!

I have tried to figure out where my mom identity lies. This has been rolling around in my mind because John and I attended an informational session about drug trials that are happening for medications that would improve the cognitive function of people with Down syndrome. It was fascinating and thought-provoking and has left me quite stumped.

If there were a pill that would help Tessa think, would I give it to her?

A mom in the group raved about the trial that her daughter was a part of. She says that her daughter’s holistic doctor (what is that??) believes that she is on “something” and the mom has seen some big differences in her daughter’s independence.

But would I give it to Tessa? Even if I knew it was 100% safe, do I want her to take it? Does it change who she is? Does it send a message to her that she needs to be somehow better than what she is? And when does it become her choice rather than mine?

We are not on a mission to “beat the odds.” We have never set out with the expectation that Tessa do any more than be her best self, just as we expect from Ellie. Does medication help her do that? Is treating her cognitive functioning level the same as someone with ADHD taking Ritalin or someone with depression taking Prozac?

Am I okay with this? Am I a part of that group of moms?

I don’t know. I just don’t know where I fit in. I like real science and double-blind studies and factual information. I like routines and structures and personal space and kindness to all. I like knowledge and teaching my kids about all kinds of stuff. I like to parent without thinking too terribly much about it… But this medication question has got me wondering – if it goes to market and is an option for Tessa, what kind of mom will I be?
One year ago…

Uncategorized

3 Comments »

We OWNED the J months.

by Maggie

No, no, that’s wrong. TESSA owned June and July. We just stepped back and watched her bloom.

Our old SLP (speech therapist) called it “sponging.” I call it awesome. I just want to list all this out, just because. Tessa’s ‘new’ since May-ish is all of this….

1. Standing… Pulling up to her feet and loving it. Seeking out opportunities to stand and finding it exhilarating. She is now motivated. I’m not sure why, but I don’t question it!

2. Stairs… Not only can she go up them, but she goes up lightening fast. AND, she has memorized the sound of the gate opening and as soon as she hears it, she’s off. Next step is to teach her to get down them safely.

3. A million tiny teeth popped out this summer. Molars on three out of the four sides, four top teeth, still has two on the bottom… She’s almost halfway through getting baby teeth in!

4. Straw cup, mostly checked off the list. We still have to work on her stamina, but this is a problem solved by Mommy and Daddy being more consistent with the practice.

5. Communication…. I feel like I need some sub-categories here. A little personality has certainly bubbled up in Miss Tessa. She is a little ham with people around us, waving hello and blowing kisses at anyone who catches her eye. She also consistently waves bye. She has some new signs (play, drink, and all done, which all look almost exactly the same, and cracker). Today, she put two signs together (more and cracker). We think she is saying Papa (both of her grandpas are “Papa”) and maybe Dada, though I’m not convinced on the latter.

6. “In” and “Out” – Tessa got the concept of “out” pretty quickly (meaning, she would take objects out of a box or similar vessel). “In” was a challenge, but she is mostly on board with it now, as long as she wants to let go of the item and we give her lots of praise following. 😉 I’m sure Ellie is thankful to have a clean-up buddy, even if Tessa moves a lot slower than her sister.

7. Play… Wow, the sister interactions are SO fun to watch now! Tessa actively seeks out opportunities to play with her sister. She loves to chase and wrestle with her; she follows her around the house (especially in the bathroom!) and Ellie has adopted “minion speech” because she thinks that it sounds like Tessa’s words. She sneaks around Ellie’s shoulder to watch the tablet games that Ellie plays. Their favorite thing to do together is crawl in circles and laugh hysterically.

8. She dances.

9. She sings and does the Itsy Bitsy Spider motions.

She’s got lots of areas to continue working on (don’t we all???), but I have to tell you that this “sponging” phase has been pretty awesome. I just love this kid.

Uncategorized

3 Comments »

Flirting with 30

by Maggie

“Aug 4 BLT” I jotted in the margins of my notebook today, a reminder of an upcoming meeting for me to attend.

I audibly gasped upon reviewing my note.

By then, I will be 30.

My coworkers teased me for being such a young’in. And really, there is nothing remarkable at all about completing my third decade. I’m sort of bracing myself to wake up with a head full of gray hairs and some wrinkles near my eyes, maybe a sore back or creaky knees, knowing full well that the effect of that single day passing will actually be minimal. Maybe I’ll feel wiser or seasoned or oddly at ease with the word “thirty.”

I am not where I thought that I would be.

I am precisely where I hoped I would be.

Ten years ago, this is not at all how I pictured life at the end of my twenties.

I would not change a thing.

(Well, except for maybe the baby weight. That I could do without.)

I am prepared to go confidently in the way of my dreams and those of my family. I am wholly open to the possibilities that are before me now or may be in the coming months. I am at peace. What more could I ask for?

Uncategorized

3 Comments »

Team Tessa Take 2!

by Maggie

Events in life that really, truly merit a 3:30 AM alarm clock buzz are few and far between. For labor, I’ll allow it. A flight to some exotic paradise, it’s not off the table. Otherwise, 3:30 is not an hour that I have any appreciation for.

For Team Tessa, I’ll make an exception.

When we woke the girls up at that ungodly hour (which was so appropriately deemed “night time” by Ellie), they were rarin’ to go. Bleary eyed adults piled into our van for the trek to the city, wondering what in the world we were thinking getting up so early but the girls? The girls were ON.

In case you can’t tell, that’s me looking exhausted, Ellie looking annoyed at another picture being taken and Tessa with her best “I’m not impressed” face.

We had an amazing team running for UPS for DownS again this year. With the help of friends, family, coworkers and totally random, awesome people (seriously), we raised over $4,000 for the group. It takes a lot of courage to sign up for any running event in Chicago in July and today’s heat and humidity were unrelenting. I’m so thankful for these amazing people and their dedication to running for Tessa.

And of course, the spectators are pretty awesome, too.

The rock, the glue, the heart of this team, John has fought through late night and early morning runs, calf pain, exhaustion, and an irritated wife to make this happen. His dedication to the cause, like his dedication to our girl, is unbelievable.

Despite the 90 degree heat and 95% humidity, we had a great day! And since I’ve been up since night time, rather than lots of words, you’ll have to settle for photo evidence…

Uncategorized

1 Comment »

Electric Fingers and a call to deep kindness

by Maggie

Sometimes, time passes between posts and I can barely feel it. Life heads full speed ahead and there’s no time for reflection or much thought at all really. Writing, my vital outlet, is shoved into some back corner of my life, jammed in between long discarded hobbies like getting manicures and scrapbooking.

But on other occasions, I feel the distance between my schedule and the thoughts rolling around in my brain. There’s an electricity in my fingers, an itch to sit in front of a screen and get the words out, but sweet time escapes me at every turn.

This is why, at 11 pm while my family is well off on their nightly journey in the Land of Nod, I’m tossing and turning. The weeks since my last post, while not overwhelmingly interesting to any outside reader, have been powerful. In the clearing out of our first home and subsequent return to the home of my adolescence, self-reflection has been running rampant in my brain. Maybe it is just the big, gulping breath of the freedom of summer, maybe it is all of the transitions happening to me and around me, but I seem to be stuck on ensuring that I am being the best that I can be for my husband, my children, my family, my coworkers, my world… and a disappointing feeling that I am not sure if I have done this well in most recent times.

This morning in church, our pastor gave a phenomenal message about the spiritual importance of kindness. While I spent so much of his sermon wrangling a squirmy and overtired 4-year-old, I desperately clung to the words he shared, feeling as if God had put me into that pew for a real reason today. I have written much about being kind and try to live it when I can, but I wonder if I have truly accepted the call to love thy neighbor… all of thy neighbors… and to show kindness to all, even the ones who challenge me or grate on my nerves at every turn.

The greatness of God’s grace is that we can fall short in the task of caring for our fellow man and still feel His love and acceptance. But this kind of deep kindness that has been on my mind today is the core of what I’m asking the world to do for my own child – to love her, unconditionally, without doing so out of guilt or charity. Have I done this as often as the opportunity has arisen? Even with those who challenge every moral fiber of my being? And if I have not been able to do so myself, how can I ask it of anyone else?

Deep kindness in action. Be the hands and feet of God. Go to it.

Uncategorized

1 Comment »

Four years of BIG

by Maggie

Me: Are you going to be a new person when you are four tomorrow?

Her: Oh yes, a whole new person!

Me: Well, why? What can you do when you are four?

Her: Oh, almost drive a car or van or anything that moves. And go to the city, but not work. I’m too young to work. And I can chop down trees. Tomorrow though. Not today.

Slow down, my little love.

Before she was born, I sat in my sister-in-law’s living room, watching my nephew Jack run around in circles and thought that I wasn’t quite sure if I could handle being a mom. She assured me that the baby wouldn’t come out of the womb quite as energetic as her lively two-year-old… slowly but surely, she would grow into toddlerhood and I would be ready for it because I would grow with her.

She was right. Baby Ellie crammed herself right into our little life – never snuggling in, but making her presence known in every moment with coos and smiles and belly chuckles.

By the time she was one, we referred to the Ellie that appeared between 5 and 7 PM each night as Tornado Ellie. And while I would never call her rambunctious or wild (well, maybe a little wild), Ellie’s infectious energy has kept us melting onto the couch after bedtime for 1,460 days now. Her first word was cuckoo. From there, the other words poured out… tee-coo (thank you), hello, tree, papa, amen, beer… Ellie innocently delivers a well-timed punchline to every moment. She is a pint-sized comedienne.

By two, “clumsy” had become her middle name. Even now, as I watch her sprawl across our living room floor, I can’t believe how, for as many scrapes and bumps and bruises she has, there have been no broken bones.

Knock on wood.

As a three-year-old, we have grown into parenting her big personality. There is nothing meek about anything that Ellie does. She LOVES and she’s ANGRY and she’s THRILLED and she’s BIG emotion in every moment. Life with her is vivid and bold and full.