Yo soy La Lay

adventures in family, faith, and Down syndrome

Spotted

I don’t usually see Down syndrome when I look at Tessa, but I do catch a glimpse here and there of her almond eyes or flat nasal bridge. I’m always curious to know if people can see it in her. Not fearful or frustrated, just curious.

I mention this now because we were spotted this weekend by a fellow member of our Ds community and it kind of jolted me a little bit into our reality. It’s something that I have been thinking about and planning for (as if I have control over it) for a long time. I always wondered what it would be like to meet other moms in our Ds community at random. It hadn’t happened yet, up until now.

Really, I spotted the little boy first. And froze. We were visiting a children’s museum in Kentucky with some family over the weekend. As I walked into the open parlor, he had his back to me, but his stance gave him away. I maneuvered my stroller to get a better view and knew immediately that he was one of our community. Watching him play with his typical brother and another little boy with Down syndrome was refreshing. They played and explored as all children do. They caused the same mischief as Ellie does. They laughed and enjoyed the exhibits right alongside their typical peers.

I’m sure his mother saw me looking at him, so, silly as this may be, I tried to keep Tessa turned so that she could see our baby girl’s sweet face. I wanted her to know that I wasn’t one of the people who stare… that I was a momma looking for better understanding of who my child might be.

She approached me, asked how old Tessa was and I shared. I stumbled around looking for something to say back and settled on asking her boy’s age (four). He ran by us at that moment and she grabbed him and showed him the baby. He took absolutely no interest in Tessa and squirmed away and that was that.

I wish I had been more engaging, that I had better articulated how watching her son run and play made me genuinely happy. I was too overwhelmed in that instance that someone knew. I’m just grateful that she was kind enough to approach me, to tell me that Tessa is a doll, and that she wasn’t upset by my awkward glances toward her family.

Kentucky Mom, wherever you are, you totally made my day.

And now, cuteness:

Fish lips

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A Princess Anna dress for the birthday girl

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Silly faces with Mimi (my mom)

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John loves a good Children’s Museum visit…

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Hanging out on the moon with Papa (my dad)

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Happy birthday, Bean!

We knew we were in trouble when one of the first words that Ellie learned (after cuckoo) was “beer.”

This kid is nuts! And I can’t believe it, but this kid is now THREE. Good golly, when did that happen??

There has been much fuss over Tessa’s Birth Day. In comparison, Ellie’s was essentially routine. A monumental day for John and I, rookie parents who dutifully painted our nursery, packed our bags weeks in advance, and researched newborns for months in preparation, but blissfully mundane for the others involved.

I was one of those moms who went to the hospital three times and got sent home before it was actually real labor. Three days past-due, I spent the afternoon before her birth buying an obscene amount of antibacterial hand gel from the Bath and Body Works semi-annual sale (which, coincidentally, sits unused in our bathroom cabinet to this day). There, the contractions began.

Labor with Ellie was long, 36 hours from first contraction until her birth. Looking back, I’m certain that she just wanted to make sure that we realized that she was going to be independent from day one.

When our sweet little Bean was born, full head of hair and a healthy cry, I literally sobbed simply because she was a she. It’s ridiculous, really.

Ellie is our go-with-the-flow, fun loving, precocious little comedian. She has the gift of gab and an insane vocabulary that she uses to get a reaction out of anyone who will listen. Everything she says is comical. Her easy-going zest for life is refreshing, but there is a strong-willed streak that makes me pull my hair out in frustration while laughing uncontrollably at the same time. I adore her goofy little laugh, her sweet smile, and the fact that she makes no apologies for liking me better than John. 🙂 Life is never dull for anyone with a three-year-old, but I’ll tell you what… this girl is really, really going to keep us on our toes as she grows older.

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The Six Month Settle

Whew.

That’s how I’ve been feeling for a couple of days now. I can’t tell you if I have been neglecting my blog because I’ve been too busy to write or if life is so mundane these days that I don’t have much to say. Summer is filled with peanut butter and jelly, Frozen, frolicking in the backyard, rinse and repeat. It’s been lovely, really.

It is hard to believe that Tessa is six months now. It feels like she has been with our family for as long as I can remember. While I know it existed, life before her… I can’t remember. I can’t remember a day when we haven’t enjoyed her sweet smile or tried to find a new way to tame her wild mop of hair. It’s like she has always been here.

Down syndrome, too, has settled into our life and become routine. I hear the comfort with Ds ebbs and flows… We have a six-month evaluation coming up shortly and while there is some anxiety about where Tessa is compared to her typical peers, I look forward to the reminder of how far she has come.

(On a side note, John tells me that we know she’s delayed and I should just forget about the whole thing. And I am. Slowly.)

These days, Tessa can roll, roll, roll! She’s finally taking interest in other things besides faces and will roll herself toward things that catch her eye. She isn’t quite sure what to do when she gets there, but it’s a start. She finally has some really good head control, which has made sitting exercises more enjoyable. She has lots more noises now that tubes are in, my favorite of which is a pursed-lipped “bbbbbbbbb.” She has been a real great traveler on our road trips this summer, as long as we have done a good job of feeding her when she was ready. We we haven’t…. Let’s just say that Tessa is very good about expressing her anger feelings.

If you are a newly-diagnosed Down syndrome family, can I say something to you? Life. Will. Settle. The mad rush of figuring things out and understanding a new way of life will be calm again. And someday, you might breathe in the comfort and try to remember Life Before. I’ll tell you, though, that from my side of settled, Before is not a place where I would return. This life is too sweet.

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Cruel and Unusual Punishment

Do you know what is the worst experience ever post-baby? I bet you do!

Bathing suit shopping.

Ugh.

You know, I bounced back fairly well after Ellie was born, but pregnancy with Tessa really did a number on me… not to mention the hours spent hunched over a Boppy pillow feeding her in the sidelying position.

Wide hips, huge feet, stretch marks, worse eyesight, terrible posture, hunched shoulders… It’s not even the weight so much as the complete alteration of my entire shape.

OK, I’m done.

I know, I know, 9 months on, at least 9 months off, you grew a human, stretch marks remind us of the miracle of life that grew in our belly, blah blah blah, yadda yadda. I’m not there yet.

But last weekend, the pool looked so inviting and fun. And I want to be the one having fun rather than watching the fun. So bathing suit shopping happened. And now I have to suck it up… and suck it in… and remind myself that she was worth it. They were worth it.

(and so were the control-top bathing suit bottoms that cost double the price of the regular kind. Just sayin’.)

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Guest Blogger Post – A Dad’s Perspective

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.

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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.

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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.

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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

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.

 

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Tubes, Take 2

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

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:

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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…

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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.

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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.

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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:

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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.

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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.

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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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