Yo soy La Lay

adventures in family, faith, and Down syndrome

Jump!

So many things…. let’s start here today:

For as strong a gross motor allergy as Tessa has, her desire to be able to jump has always been high – so high that I’d rank it right up there with “eating all the donuts” and “figuring out how to open the front door.”  We signed her up for Karate with Ellie through our park district.  At the end of class, when they would practice by jumping from one mat to the next, a small part of me was so sad to see her crouch down, expecting to jump like her peers, only to need the support of her aide and teacher to be lifted up across the divide.

Unlike me, it never got her down.  She developed her own methods, popping up from her crouch and raising up on her toes as high as she could, or dropping to her knees and pretending to be a frog.  She laughed gleefully each time she attempted to get airborne.

I hadn’t thought about jumping for a little while.  School is out for the summer and we declined Extended School Year services for Tessa.  In a nutshell, this means a summer without therapy.  She gets activity in through Karate and swim lessons – and life with her big sister is pretty much a 24/7 speech therapy session. Mostly though, we’re taking it easy.

And then this:

Did you see those sweet little toesies get airborne?!?

We work so hard for progress in every area, and she is making it.  Sometimes though, it just takes a little step back on our own part and letting her figure it out.  And when she does, well, it’s got us all jumping for joy. ❤️

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Control Freak

If our children always did what their parents wanted, we certainly would not have Chicken Baby in our home.  If you haven’t met Chicken Baby, here he (it?) is:

I am uncertain who thought it would be a great, marketable idea to put a Cabbage Patch doll into a chicken costume, but there he is.  And he’s aaalllllll ours!!  (And by ours, I mean Tessa’s.)
Who would choose this creepy little creature as a comfort object??

We acquired Chicken Baby on one of our nine bagillion trips to Target in the last three weeks (because new house, of course).  If children always did what their parents wanted, Tessa would have behaved herself on that trip, and we never would have ended up in the toy aisle, searching desperately for a soothing object that cost five dollars or less.  An entire rack of cute stuffed animals were lined up in front of us and we got Chicken Baby.  

I didn’t go into parenthood with many preconceived ideas of who my children would be.  I assumed that we would get some extroverts,  because we are.  I assumed they would excel in school.  I knew, before parenthood, that I could keep my girls from having a princess complex.  No pink frills, no referring to the girls as princesses. 

Last week at preschool graduation, Ellie was the only girl in the class who said that she wants to be “a princess” when she grows up.  

So there’s that.

One of the most difficult parts of parenting for me is letting go of my desire to control the choices that my children make.  They are young – we are not grappling with major life decisions here, but sometimes John lets Ellie pick out her own outfit and it makes me twitch just a little.


Or when she refuses to dress her Barbies and I continually have to encounter Awkward Barbie Moments… 

(This is tame.)

It takes every fiber of my being to Let. Go. on a regular basis.  It’s Type A parenting, desperately hoping to be just a little Type B, for the good of their development as independent women.

I think having Tessa has pushed me, just a little, to embrace the path that my child will follow, whatever that may be.

(OK, not whatever.  Bank robbery and juvenile delinquency are off the table.  As are jobs at establishments where women wear spandex shorts and push up bras.)

In any case, my own personal preference for matching clothes and markers with their caps on correct color probably seem like small potatoes, but I’m trying to use these situations as practice for the Big Ones, like choices about college and living arrangements and buying ridiculously overpriced clothing because it’s on fleek or whatever the new phrase for “cool” is at the time.

I feel as though they are going to give me lots of practice this summer.  And I need it.

Because seriously, the markers.


(Somewhere across town, my mom is laughing quietly to herself, smiling and saying ‘hehehe, now she knows what I went through raising her…’  I have an insane amount of respect for that woman.)

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Wait for it, wait for it…

I’m lounging in a little bucket chair, feet propped on a kitchen step stool.  I have placed a padded car seat headrest to support my throbbing feet.  There are boxes all over the living room, no furniture, but our TV is up and running on an old end table and I’ve got a tall glass of ice water keeping me (mostly) cool.  I have learned in the past few weeks that we are at a point in life where chaos does not suit us well.  Last week was an epic cluster of rushing around to do God-knows-what in preparation for 49 different line items that were a Very Big Deal.

In this very moment, I’m feeling like there’s no chance that we will catch a break and we’ll just keep barreling down the road toward losing it.

But.

In all of the crazy, there’s-so-much-I-can’t-even-make-a-list, what-the-heck-is-going-on???, there is also bright – a new, perfect home that is exactly what we need… two beautiful, healthy little ladies who, in the stress of all the change, still adore each other… our own, happy, loving marriage (about to celebrate seven years running).  Bright.


The days before my summer sets in are like this – this year more than years past simply because of the move (and the stomach flu, because why not?).  The long stretch is coming, the days of evening bonfires and the annual Mommy Ellie Zoo Trip and all the fun that is our favorite season will be here before I know it.  So for now, I’ll just seek out the small reminders of our blessings, knowing that the big, deep sigh of relief is just around the corner.

Summer….. Come on, summer!!

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Life, lately… June 2015

It’s been quite some time since I just posted cuteness…  so, here we go!

The girls rode in a cart together for the first time:

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My mom and Tessa are so photogenic…

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And I decided to join in the fun!

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This is our “Tiger Family.”

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Ellie got a new bike helmet so that she can ride her bike.  She insisted on wearing it around the store.

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Daddy has been practicing his hair combing skills.

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Ellie is so very excited to spend more time with her cousin this fall when my mom watches her. 🙂

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Don’t you just love gaggles of small children??

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Tessa is not impressed with most foods these days.  Who can blame her?  She just got FOUR teeth in at the same time!

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When there are a thousand boxes around the house, you have to have a little fun!

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Well, fun until it isn’t so much fun anymore…

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Tessa is getting so big!!!

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It’s been raining a TON, but we decided to brave the rain and take a little bike ride anyway!

IMG_8542These last three of Tessa are from today…  I can’t wait to print them to hang in my office.  She is so pretty!  🙂  
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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!!

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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!

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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:

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

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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.

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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.

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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:

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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!!

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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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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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The First Day

I will never argue that teaching is the hardest profession.  There are lots of people who do hard work in other jobs.  I can’t easily make an argument that we need a summer more than anyone else… all I can say is that in my experience, the amount of stuff that we cram into a nine-month school year necessitates a long resting period.  There are few days more thrilling than the first day of summer.

In our house, summer looks like an open stretch of road, full of possibilities.  It’s sunny and vibrant and beautiful and free.

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It doesn’t require an alarm to sound at 4:30 in the morning.  It doesn’t mean melting into bed at 7:30 or making a 5:30 am run to Walmart because there is no lunch food in the house and Momma’s gotta eat.   It’s getting up when the sun is already there to greet me and the ability to actually go for a walk.  It’s kiddie pools and backyard fires (with s’mores!) and playtime and fun… fun that doesn’t have to squeeze into a two-hour time frame before dinner and tubbie and bedtime.

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It means putting away the Snow Angel jammies (starting tonight.) and putting on flip flops and shorts and band-aids on skinned knees.  It’s summer.  It’s HERE!!!!!!!!!!!!

 

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5 months

Tessa has been five months for a little over a week.  I have not been putting off this update, I’ve have just been waiting for some calm so that I could get all the information in one post.

And then I realized that there is no calm and decided to write it anyway.

At four months, we decided to schedule her ear tube surgery and bronchoscopy.  Then, as is well documented on this blog, we had the pneumonia hospital visit and subsequent recovery.  Now, we wait.  Surgery is scheduled for June 5th, which puts it after school gets out (no time without pay, yay) and during the time that I was originally scheduled to travel to Costa Rica.  Clearly, God was keeping me back for a reason.

Here is where we are at in terms of therapy:

Physical Therapy

Tessa is a rock star on her tummy.  She is right at her age with her “tummy skills.”  She is still wearing kinesio tape to help activate her muscles.  I still think the idea of tape on the belly is kind of bizarre, but we’re going with it.  She’s slightly more delayed with her sitting skills (about a month).  We have had the chance to break out the Bumbo seat and while she can’t last it in for a long period of time, she does kind of like to see the world from a new perspective.

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The therapist has recommended using cabinet liner to help stabilize her when she sits in the Bumbo or when we do “couch sitting,” which is when she sits using the corner of a couch for support.  Creative, cheap, useful… It works.

Tessa’s new strange habit is this loud groaning sound that she makes regularly while tensing up all of her muscles.  We’re glad that she’s practicing using the “right” muscles (the ones that flex), but the groan kind of freaks people out.  My theory is that she just likes to hear her own voice (just like her mother).

Speech Therapy

Upright feeding is going great, hurray!!  We are at a point where anyone who wants to can give her a bottle and that makes me a very happy momma.  The next step is building up her core and mouth muscles to prep for solids.  We hope to start with some cereals this summer, but need to make sure that her body is ready for the different textures.  We do mouth stretches with her and use a little tool that looks like of like a solid straw with ridges on it to massage her gums and tongue.  I’m happy with her progress here, but curious to see if the bronchoscopy will reveal anything interesting going on inside her throat.

Here, you can see how happy Tessa is to have to sit at the dinner table, but not get any cupcakes:

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Developmental Therapy

So we’re seeing some more pronounced delays here, but the victory is that progress is happening.  Tessa loves people.  All people.  All faces.  All toys with faces.  But things without faces?  Not so much.  She is reaching, which is good, but we need to get her hands to open up a little more.  She can’t interact until she gets motivated to grab at things and explore, so the new development in developmental therapy is that it’s time to call in occupational therapy.

Sorry, that was a lot of terms.

Basically, Tessa’s occupation is to play, so we need to make sure she can do that effectively.  We are going to get her started with some occupational therapy to help this progress… because while Ellie is a great example for Tessa, she does a lot more toy-swiping than toy-giving.

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(this is the best of my failed attempt at a cute picture of these three)

Overall, we are joyful at the growth in both of our girls, prayerfully optimistic that surgery will go well, and ecstatic that our summer is finally here.  Just three more days of class for me, another week for John and we will have lots of this…

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and this…

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and hopefully not so much of this… but I had to send some love to my husband (and dad) for fixing my car…

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Welcome back summer, we’ve missed you.

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