Yo soy La Lay

adventures in family, faith, and Down syndrome

Reacting Appropriately

And here is the difference that Down syndrome makes:

Belly sleeping must be something genetic.  From me to Ellie and now Tessa… we love it.  As Ellie has grown, she has embraced more of a “pass out sprawled as awkwardly as possible across the entire bed” approach to sleeping.  However, I still remember finding her sweet little diapered butt sticking up sky-high in the crib when she was an infant.  There are pictures, gobs of pictures, washed out in the terrible flash of an iPhone camera.  It was just darling.

(On a side note: how did we function before digital cameras?)

Tessa, too, loves the comfort of belly-sleeping.  But finding her with her knees tucked under her butt, rather than sprawled flat on the mattress, gives me a markedly different reaction.

It’s monumental.

It’s me rejoicing – she can! She can!! She can bring her knees up under her body.  She did it!!  The practice is working!  Miss Kate and Miss Rachel (OT and PT) will be so proud!  I’m so proud!!

Every milestone is a rockin’ celebration.  I don’t even get pictures of this stuff because I’m too excited to consider a camera.  Yesterday, Tessa found herself in the mirror during her bath.  I don’t have a clue when Ellie first stumbled upon her reflection, but yesterday, I sat and stared in awe while our little peanut shyly smiled at herself.

Monumental.

This is the challenge now, when there is a child born with obstacles… reacting appropriately to the successes of others.  Everything that other kids just kind of figure out takes her so much more.  And so commiserating when the momma of a typical child impatiently wonders when her child will be able to XYZ… it’s hard for me, okay?  It is.  It just is.

And now, cuteness:

IMG_6039

IMG_6051

Advertisements
7 Comments »

Team Tessa Rocks Chicago

The last week and a half was so busy and went so fast that I’m trying to figure out if it actually really happened or not.  I’m looking forward to sharing some pictures from our great vacation in Saugatuck, Michigan.  But first, we had the most amazing day on Sunday.  Team Tessa absolutely rocked the Chicago Rock n’ Roll Half Marathon and 5k!

We raised over $5,000 for our favorite parent support group, UPS for DownS and were the top fundraising team for our group.  When totaled, all of the runners who came out to race raised over $34,000!!!  Amazing!!

Team Tessa is ready to race!!

IMG_5987

While the day started a LOT earlier than any of us would have liked (especially me, as we were at a wedding the night before…), it was so cool to walk through the city early in the morning, watching the sun rise up over the buildings as 30,000 runners made their way to the starting line.  Ellie was very excited to see the skyscrapers and to wear her Team Tessa t-shirt.

Ellie can’t believe that she has her two favorite people, her grandmas, (almost) all to herself!

IMG_5992

As we waited for the race to start, Tessa managed to have her own little monumental moment… she held her bottle on her own for two full ounces!!  I was able to send this picture to John right before he started running:

IMG_5993

But apparently, that milestone really took it out of our little rock star, because she slept for most of the rest of the race…

IMG_6016

 

Ellie had a great day too, despite the fact that she got up at 5:00 in the morning.  She managed to be three-year-old-meltdown-free until we didn’t let her take off her shoes in Subway after the race.  She loved watching the race with her Papa.

IMG_6004

 

Somewhere between miles 4 and 5, we saw some of the racers.  Clearly, they weren’t too worried about their time, because they took a second to say hello!

Waiting for the finish, the Team Tessa supporters who were able to come to the race on Sunday gathered for a cute picture.

IMG_6015

While I hoped to catch all of our runners out on the course, three of them were just too fast for me.  But  here’s a picture of John and Uncle Mike crossing the finish line:

IMG_6018

 

It was such an awesome, inspiring day.  We met some great people, enjoyed the great city of Chicago, were blown away by the supporters of our group… and were amazed at the outpouring of love and support from our family and friends.  We can’t wait for next year’s event!!

IMG_5986

2 Comments »

5 years

Love is friendship set on fire.

It has been five years since this monumental day:

0406

When I first met John, he was stumbling into our 8:30 AM introductory Education class, decked out in his wrinkly pajamas, looking like he hadn’t bathed in a week.

It wasn’t exactly love at first sight, but he was certainly intriguing.

0465

We were friends for a long time.  I liked him because wherever we went, whatever we did, we had fun.  He liked me because I bought him breakfast when he was low on cafeteria points.

0484

 As our friendship grew into forever, our friends joked that they couldn’t believe that it had taken us so long.  And when he proposed, on one knee in front of 300 students and faculty at the prom that we were chaperoning, there was not a doubt in my mind that this is right.

0545

 We had one argument in the wedding planning process.  I wanted a nice car to transport us to our reception.  Mindful of budget, he suggested a bus.  I’ll let you in on a little secret here: while 99% of the time, John likes to let me be the boss (something I appreciate tremendously), when he puts his foot down, I listen (no one in my family will believe this).  We got the bus.

0567

 We vowed to love God first, then each other.  We laugh every day.  We argue.  We pinch pennies.  We complain about each other.  We bond over America’s Got Talent and the amazing Jon Stewart.  We have grown our family in the desire to love every minute of our life and we do.

0884

5 years.  1,825 days.  43,800 hours.  2,628,000 minutes.  1 mortgage.  4 different jobs.  1.75 Master’s degrees.  2 beautiful girls.  2 sweet angel babies.  21 states.  3 countries.  75 viewings of the movie Frozen.  1 NICU stay.  1 PICU stay.  3 half-marathons (those are all him, but I’m a great spectator).  1 mission trip.  4 anniversaries in a car.  Approximately 200 rolls of sushi and Lord knows how many ice cold beers.

It has been a wild, crazy, beautiful, wonderful, roller coaster ride.  I’m so thankful that, through it all, he is my constant.  We are not who we were when we said our vows five years ago.  Praise the Lord for that.  Stronger, closer, fiercely in love with each other, with our family, with our life.  Whatever comes our way, we walk together.

0812Happy anniversary, Jefe.  There is no one better for the celebrations, no one better for the trenches, than you.  What a beautiful life we have been given to lead together!!!!  (Did I get enough exclamation points in there for you?  Maybe I could add a couple more?!!!?)  I love you more than the sun and the stars.  Thanks for sticking with me.  Love, Mags

5 Comments »

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.

IMG_5742

 

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!

IMG_5794

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! 🙂

IMG_5749

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!

IMG_5732

IMG_5782

IMG_5759

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.

1 Comment »

Let’s Clean House!

So today I am wondering if my house will ever (EVER.) not look like this:

20140706-145254-53574512.jpg

To the left, you will see our “therapy bins.” Think that sounds fun and interesting? It’s actually all the junk that accumulates in our downstairs living space week-after-week. We call them “therapy bins” because every time Tessa has a therapist coming over, we throw everything into a bin and shove it into our master bedroom.

We have seven very full bins.

Did you happen to notice my half-painted toenails? The ones that I have been planning to paint before every one of the three road trips we have taken since Father’s Day? Someday…

On the bed, there are stacks of clothes that will surely find themselves piled on the floor at bedtime tonight. And then, we won’t know what is clean or dirty anymore, so they’ll probably get thrown back into the wash just because.

On the plus side, I did manage to mop the bathroom floor for the first time in…. for the first time.

The strangest part of all of this is that we are not busy people right now.

A couple of weeks ago, my husband asked me if I wanted to spend two kid-free days cleaning our house in celebration of our five-year wedding anniversary. While I’m sure that the most practical answer to that question would have been “YES! What a fabulous idea,” my response was something along the lines of “only if you want this to be your last anniversary. Ha Ha Ha.” I just don’t want to give up quality time to clean! While I really do enjoy a sparkling home (I think… It’s been a long time so I’m not actually sure), I enjoy living with my family more.

When I took Tessa to have one of her first blood draws, there was an elderly lady in the waiting room who was totally drawn to her. She told me “Don’t go home and do your dishes. My kids are in their sixties now. I can’t hold them anymore. I don’t remember the days that I scrubbed my floor or vacuumed. I remember the times that we played games or went for walks. Do those things.”

And so I am.

2 Comments »