Yo soy La Lay

adventures in family, faith, and Down syndrome

Reflections from Ellie

More than me, more than John, Tessa adores Ellie.  The bond that these two share is unlike any I have ever seen before. This morning, I stayed at home an extra 10 minutes so that I could see my girls wake up before I left for work.  Ellie is quite the grump in the morning, but John has found that by plopping Tessa next to her in the bed, she wakes up totally happy.

Watching Tessa wake Ellie up this morning was the cutest thing I have ever seen.  (And, I apologize, because I have no video of the event.  Some things are better experienced  when you aren’t looking through an iPhone screen.)

We wanted to share Ellie’s thoughts on Tessa and her birth.  So, we asked her to tell us about the day Tessa was born.  This is what she told us:

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Not-So Magic Kisses

Well, did you miss me??

I’ve been commanded to blog, so blog I will.  Let me tell you about the highlight of my week.

On Thursday, Ellie had a day.  Actually, a week.  Oh my.  This whole daylight saving time change?  It’s crap.  I believe that the sole purpose of “falling back” is so that people who don’t have children and don’t like children can torture those of us who continue to overpopulate the earth so recklessly.

So anyway…. the highlight of my week.  After the wild day Ellie had with the Saint that is our daycare provider, I decided to take the girls to the grocery store to pick up some frozen pizzas.  Why not reward bad behavior with a delicious treat?  We made it through the shop relatively calmly.  However, in the checkout line, disaster struck.  Ellie took an epic fall and bonked her head on the wall next to us.

The “wind up” when kids are about to wail?  This one was a full 5 seconds.  One-mississippi, Two-mississipi… You know.  The waiting is excruciating.

People stared (c’mon now, ya’ll have been here, too).  I tried and tried to calm her.  We were approaching meltdown, so I decided to pull out Mommy’s Magic Kiss.

Me:  Hey, hey, let me give you a kiss.  It’ll feel better.

Her: (sniffle, sniffle) Oooooo..  kkkkkkk…  (sniffle)

I plant a kiss on the back of her noggin and say a little prayer.  Please work, please work, please work…

Me: Okay, okay, now, are you feeling better?

Her, screaming:  YOU MADE IT WORSE!!!!!!!!!!!!!!!!

From there, I may or may not have resorted to bribery.  Checkout-line candy is oh-so convenient that way. And that, my dears, was the highlight of my week.

The end.

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Lesson #10: They’re different.

This is part of the 31 for 21 blog challenge!

(Another post from John tonight. It’s a short one (It’s Friday!!!). Soon, he’s going to need his own log-in name. 😉 )

This is a universal truth for parents of more than one child. Our children are very different. Not because of the extra chromosome, just because they are. Simply put, Ellie will make you laugh hysterically. Tessa will make you glow.

a little flashback to summer fun

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Lesson #9: Mornings are far more complicated

This is part of the 31 for 21 Blog Challenge!

(John decided that he wants to contribute…. so this one’s from him.)

The only reason I’m doing this is because Maggie is going to burn out if she doesn’t get some blogging help…and because her blogs need something funny as opposed to serious.

If you are a parent you must know the joy of getting your kids out the door (especially when you have somewhere to be).  My morning is funny.  Mag is out the door before the kids are awake and to be perfectly honest, she doesn’t have a clue about being under pressure.  I know what you’re saying… Maggie was with Tessa in the NICU, Maggie was at Tessa’s ear surgery all alone, Maggie works with the therapists to help Tessa…but she doesn’t get the joy of helping these little humans look presentable before day care.  Therefore, she doesn’t know real pressure.

Here’s a story about real pressure:

This morning Tessa wakes up at 4:00 am because apparently she’s trying to get a head start on daylight savings time.  We have a talk while she eats her bottle.

Me: “Tessa, you need to sleep in later than this.”

Her: “Dad, you need to wake up earlier, today is a new day and you’re wasting it by sleeping.”

Me: “Yes, I understand your point, but you see, Daddy needs rest in order to have patience with your sister.”

Her: “Look, when you share a room with her then you can talk to me about patience, until then, just pass the formula.”

Then Ellie is awake.  At this point we are playing fictional character lottery.  What is fictional character lottery you ask?  Well, every morning when Ellie wakes up she is reincarnated as one of her favorite characters.  It could be Anna, Elsa, Aladdin, The Little Mermaid, Princess Sophia.  In any case, I begin the egg shell walk because if I get the wrong character, our little actress will be upset.  I am a lawyer during cross examination:

Me: “Good morning…Soph-”

Her: “I’M NOT SOPHIA”

Her head goes back under the covers and I let the anger hang in the air.

Me: “What I meant to say was…Good morning…um…Anna of Arond-”

Her: “I’M NOT PRINCESS ANNA”

I’m 0-2.  Third time is a charm or a strike and by now I’m going to be late as it is, so I may as well just keep throwing out names.  I say the entire cast of Frozen in 2 seconds.  She is staring with a look that says, If you think for one second that I’m going to reveal my identity this easily, you should turn around, walk to the bookcase, and re-read What to Expect When You’re Expecting.  Because in that book it clearly states that I AM NOT AN INFANT!

I let her pick out her clothes…part pajama, part scuba gear, and give her some goldfish crackers so I don’t awaken the hangry beast.  Meanwhile, Tessa needs to get dressed.  She wears something cute because she doesn’t realize she is opinionated about what Mags puts out for her to wear.

Ok, Let’s recap…Tessa is dressed, Ellie is dressed.  Here comes the hairbrush.  Combing Ellie’s hair should not be the dramatic scene that it becomes.  Never having had long hair, I suppose I am more sensitive to her “pain” when she gets her hair brushed.  She is able to avoid me at every turn.  If Ellie could move all day like she moves when she is about to get her hair brushed, I would sign her up for the NFL and put her on my fantasy football team because no one could catch her.  She’s like a greased chicken (if there is such a thing).

When I finally set her down to brush her hair we have a heart to heart.

Me: “Ellie, you have to get your hair brushed so you can look presentable”

Her: “Go brush Tessa’s hair, please”

Me: “Tessa doesn’t need her hair brushed, you are the person who needs their hair brushed.”

Her: “Can I brush your hair?”

So, of course, I let her brush my hair to be an example of courage in the face of the comb.  She begins to brush my hair and she looks at me and demands, “Cry.”

Me: “I’m sorry?”

Her: “Cry when you get your hair brushed.”

Me: “You want me to-”

Her: “Cry.”

I shed a few pretend tears and we trade places.  She sits patiently now that justice and fairness has presided over our situation and her hair is now brushed.  (Although, it still looks terrible because I tried to put it in a ponytail but it never looks as nice as when anyone else puts it up).

The finish line is in sight.  We are almost to the door.  We walk to the car.  We sit.  We belt.  We smile.  We realize we have left our favorite pink fleece in the house.  We need to get it.  We will not be calmed.  We will not be reasoned with.  We will all go back in to the house together.  We are now wearing the fleece.  We drive.  We arrive. We drop off.

I realize this ranting sounds like lies and exaggerations.  This is real life.  It is our life. Well, ok, Tessa can’t really talk, but that is a minor exaggeration.  But I didn’t tell you the best part.  When I drop them off they become two great, well-behaved kids (95% of the time).   I wish Ellie a great day and tell her I love her.  She promises me that she will be more well behaved in someone else’s care than mine.  Tessa smiles…it looks like a pity smile but who can tell.

I can’t emphasize this enough…This is not a complaint!  This is hilarious.  I truly wish you could have this experience because while the pressure is on, the time is crunching, and when everything seems like its falling apart… these kids make me laugh… They’re both nuts!  They fit right in. 🙂

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4:30 am Tessa

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Lesson #1: We ain’t slowin’ down.

I thought a lot about how I wanted to start my Blog 31 for 21 Challenge.  I have a list, you know.  Of course I do.

Instead of my awesome blog start, I got work, work, double work, paperwork, pick up kids, migraine starts, football game, potty break in locker room, drive through dinner, beer.  Pajamas, prayers, teeth brushed, stories read, lights out, Extra Strength Tylenol, crash on couch, Peppermint Patty.

I think it lends itself well to one of my first lessons after Tessa’s birth: life isn’t going to stop just because of this diagnosis.  Sure, we cram in a few therapy sessions, sometimes we get sidetracked by an illness or a doctor’s visit, and Lord knows, we are on a different pace than we may have planned, but the world has not stopped turning because of Down syndrome.

We take the kids to restaurants and ice cream parlors.  We throw them into the car for road trips and family functions.  We still work, they go to daycare.  We have our parties and bonfires and go out on dates without them so that we can complain about how crazy they make us and how much we miss them when they aren’t around.  They have sleepovers at Mimi’s house and we go to church when we can and all of the things that have always happened still happen.

Life doesn’t have to stop when Down syndrome enters.  It may adjust, but it still marches on and we can make of it whatever we choose.

Love this!  Belongs in my classroom somewhere....

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The Halloween Debate

About a week ago, Ellie announced to all of us that her costume of choice for Halloween is “a potty.”

Digest that for a moment please.

I’ll be honest, I am totally frantic about this. John is not. As a matter of fact, I would say that he’s practically giddy about her choice. That’s what happens when you teach eighth graders all day long.

I have attempted to change her mind, offering amazing costume after amazing costume to entice her interests. Frozen? We can do Frozen! Dora? Doc McStuffins? I’m desperate enough to let her be a princess!! I am failing. For a brief moment last week, she decided that her costume would be “Ellie,” but after only a few hours, we were back on the toilet train.

At what point do I put my foot down and force a reasonable choice? Or should I just swallow my pride and let Ellie deal with the embarrassing pictures when she’s 18 and creating a slideshow of pictures for her high school graduation?

My strategy, for now, is compromise. Yes, you can dress like a potty at our Halloween party, where our family and friends know us and won’t think we are nutcases. No, you can’t wear it for Trick-or-Treating. I think that’s fair. Maybe even reasonable.

Why do I feel like this is foreshadowing my life when she’s an adolescent?

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Giggles

Okay, okay, okay.  For heaven’s sake, enough with the Debbie Downer posts.

I mean, seriously.

Can I share some good?

First, this kid is potty trained:

photo (11)Why she wouldn’t smile, I’m not quite sure.  I just decided to join in with her.  And the cat face?  We went to a “Fall Festival” fundraiser for Down syndrome awareness,,, we aren’t really cat people, but Ellie likes to be different.

Anyway…. the potty training… it’s done.  They do it when they are ready, ya’ll.

Also, this kid laughs:

IMG_6178I cannot even begin to tell you what joy filled us to hear her laugh for the first time.  It caught us totally off-guard and it was AHmazing.  I have replayed the moment in my head a thousand times, hoping that the sound and the feeling never leaves my memory.  In the following video, you can kind of hear it.  Unfortunately, pretty much the only thing that makes her giggle (for now) is an obnoxious, fake laugh from John.  It’s a little tricky to hear her, but still worth the view, because her smile alone is rockin’:

Tessa is still rolling all over, pushing up on her arms and now gets to her knees pretty often, too.  She can’t really pull her belly up off the floor, but she is engaging her hands a lot more.  We have set a very loose goal of sitting by Columbus Day, crawling by Christmas, remembering, though, that she will do it all in her own time.  She is loving food of all kinds. We have yet to find a puree that she doesn’t like (of course, we haven’t ventured into the meat variety yet… eew).  She is “talking” up a storm, finally mastering a “buh” sound and sometimes a “duh.”  As her core gets stronger, she will be able to laugh more and make louder sounds.  She spends a lot of time folded in half, chewing on her toes, like lots of kids do.  She is infamous for getting stuck underneath the furniture.  We think teeth may be coming soon, as she is drooling up a storm and chewing on everything that she can get into her mouth.  Still, she is an awesome, easygoing, happy little baby.

And now, cuteness:

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The State of Our Union: July, 2014

Midway through 2014…

What?

Seriously, when did that happen?  Our lazy days of summer have been very, very good to us.  With the Fourth of July holiday now over, I can already feel the itch to get back to school.  Crazy as I know it is, I do miss the routine of our school year.

But not enough to rush back in already.  🙂

Here’s an update on how we’re all doing… skip to the end if you’re only interested in our most-interesting family members (meaning: the kids.  I’m not offended if you don’t care much about John and I.  🙂 )

John and I

We’re coming up on our five-year wedding anniversary (this Friday!).  As we have spent every one of our anniversaries in the car and this year will be no different, on kind of a whim, we went out to celebrate last week.  Hiking in a forest preserve, beers at a local brewery, Buffalo Wild Wings for dinner (because it’s within walking distance from our house), and then walking home in the pouring rain… it wasn’t exactly a romantic celebration of our love, but I think it fit our couple personality well enough.  Maybe not the hiking… no part of me is a hiker.  But we did it.

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Why buy a card when you can just show one to your husband in CVS for free???  🙂IMG_5746

John is loving every minute that he gets to play with his girls.  Grad school is in a lull right now before his final push to the end and Lord knows that no one is ready for that to be over more than we are.  He’s also training for the Chicago Rock n’ Roll Half Marathon (donate here), which means a lot of late-night and early-morning runs.  I’m so proud of him!  And, our team is in first place for the amount of money raised.  I can’t wait for the race!!  Team Tessa will be out in full force!

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I’m settling into a new position at work this summer, which has been a (good) whirlwind.  I have also made some good connections with mommas in the Down syndrome community and I, like John, have really enjoyed time with the kids.  My travel bug bites are sufficiently calmed for a little bit from all of our mini-excursions, though my recently-renewed passport is just dying to be used…. someday….

Ellie

Can I tell you again how much I despise potty training?

The child is a nutcase and I adore her.  She’s smart as a whip and fiercely in love with all things Frozen.  We have seriously watched the movie at least 5 times a week for the last month.  Now if we could just get her to take a break from her imaginary universes and start listening to her bladder, we could move all move forward.  Ellie loves her sister to pieces and we haven’t had a single issue with jealousy or regressing to baby behaviors.  What a blessing! 🙂

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There is no filter on this picture.  Those eyes are going to break hearts someday….IMG_5778

Tessa

We had Tessa’s six-month IFSP review yesterday (her IFSP is the document that outlines her goals for development).  She is almost seven months old!  Her occupational therapy evaluation was yesterday as well.  On the positive side, she rolls like a champion and is actually “advanced” for her age at that skill!!  However, she is struggling to use her hands to do more than swat at toys or put things in her mouth.  When she was evaluated today, we learned that developmentally, her fine motor skills with her hands are around the two-month range.  So, going forward, we’re going to add in occupational therapy once a week.  We have to work on her core strength.  It’s difficult for her to do much of anything until that tummy strength improves.  It will help her move, play, eat, breathe, interact… it’s a huge focus for us right now!  As our developmental therapist (DT) explained to us, she’s going to keep developing cognitively and if her body won’t do what her mind really wants to, we have to worry more about her behaviors (which, by the way, happens in classrooms all across the world all. the. time.).  In true Tessa form, as soon as she heard her DT say this, she started to improve.  I swear to you that as soon as this child hears that she isn’t doing what she should be and we’re going to add more therapy, she hurries up and “gets” the new skill…

This month, we also started solids with Tessa.  She seems to be indifferent to it really.  Can I also mention how much easier it is to do things like start solids when you just have one child?  I don’t know why, but we have been really inconsistent in feeding Tessa at the table.  Weird.  Anyway… right now, she doesn’t eat a whole lot by spoon and she’s slow as molasses, but she doesn’t spit it out!  While we can’t always tell if she is interested in more or not, she will let us know when she is done.  With great joy, she spits it all in our faces by buzzing her lips.  The joys of parenting…  I have started using a few signs with her (“more,” “all done,” and “eat”) and I’m sure that once John reads this update, he will, too. 😉

Tessa’s emerging personality is sweet and easygoing but has a flair for the dramatic, she loves people and being held, adores her sister and daddy (and most other people)…  She sleeps well, is now eating well and provides great balance for us and her goofy sister.  She is such a great addition to our family!

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As our summer dwindles (but not too quickly!), I can’t help but feel so blessed for all that we have right now.  Our family, friends, and coworkers have been overwhelmingly positive, supportive, loving, helpful… I could go on and on.  For now, I just want to say thanks.  If you are reading this, you have been a part of this… of us and we can’t thank you enough.

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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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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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