Yo soy La Lay

adventures in family, faith, and Down syndrome

Home again, home again.

I’m soaking in the last few minutes of solitude.  Through a series of events, it happened that I ended up checked in for my flight and at the gate about three hours early.  And it’s good.  Good people watching, good decompressing, good reflection.

It was such a great weekend.  I’m tired and ready to come home to my loves, but wow.  This trip was exactly what I needed.

Texas is big and flat and though I barely saw anything while I was here, it’s now officially on my list of places that I actually do want to visit.  I don’t think I met an unkind person while I was here.  I didn’t venture off the hotel property much, but enough to feel welcome and loved on by all the Texans I met.

I didn’t come to this retreat with any burning questions, but I have left with answers to questions I didn’t even know I had.

It’s amazing how quickly the awkward “I know you online but who are you?” faded into easy conversation with what felt like old friends.  Wine helped with that, but so did the feeling that these women, they are my people, my tribe.  There were laughs and wows! and ‘hey, I totally get you’ moments… Kleenex boxes at the tables wiped away good, cleansing tears and we just enjoyed each other for 48 hours.  

I’m excited to come home.  I’m tired, but refreshed.  I’m reflective, but forward-thinking.  I’m ready to put my nose to the ground and do the work.

So, so good.


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Incomprehensible

This morning, with her little button nose smushed up as close to me as she could get, Tessa sang me a song.  I couldn’t understand the words, but her smile told me it was a sweet one.

My day has been filled with moments that I want to freeze in my memory.  Like for many around me, it is hard to digest all that has happened this week.  I find my breath catching in my chest as I soak in the calm breeze in my backyard, or my sweet five-year-old chattering with a robin outside her window.  

We have so much.

I did not wake to the news of Dallas this morning.  Before the national news, another devastating headline about a former student crossed my feed.  He, a troubled child, too adult before he was ready, sat in my study hall not too many years ago and dared me to attempt to control him.

I won him over, quickly, with patience and Jolly Ranchers.

I never found anger to be a useful tool, nor lectures.  I don’t know that either can help a person gain perspective or bring warring sides together.  But a show of love to the unkind, the hurt, the confused – that has seemed to build bridges, at least in my life.

Just a couple months ago, that student crossed my path again, sitting in the office of our building, inquiring about how he might be able to finish his high school degree.  

He had been through so much.  Made so many bad choices.  An adolescent with a brain that did not work like an adult’s, thrown into Big, Heavy situations long before his mind could control his body as he needed it to.

I do not know what chance he will have to finish now.  We could not save him.

Today I have soaked in every little privilege that my life circumstance has afforded me – the pile of books on the playroom floor, which my girls have been raised to love, the box of chocolate from my loving and devoted husband, fresh, clean clothes and our own laundry machine in the basement.  Clean water, clean home, stability, resources, safety, education, love.

We have so much.

I can’t imagine the lives of those who do not live as I do, but I understand that by pure chance, it has been different. And so I learn as much as I can.  I pray and try to be kind and gentle.  I don’t know what else to do.  I don’t know what words to say.  I don’t know how to stop the hurt.

This morning, Tessa sang me a song.  Her sweet words were incomprehensible, but beautiful nonetheless.

We have so much.

Someday I will understand.

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A Typical Two-Year-Old 

A few weeks ago, I had the rare opportunity to sit in on one of Tessa’s therapy sessions.  Since we moved, her new therapists come while I am at work and I rely on my mom and the therapy notes to learn about what she is working on.  So, when situations arise where I can be a part of the sessions, it is a treat. 

I was sharing with her DT and OT some of the newer behaviors that she has that are making me bonkers.  All kids do goofy stuff, but sometimes the approach to existing with those behaviors is different when a child has some kind of cognitive delay.  In any case, after my little laundry list of items, her DT laughed and said, “well, she is certainly displaying some typical two-year-old behavior now!”  

This was music to my ears!  For as content as I am with whatever level of development either of my kiddos reaches, it’s fun to see them enter a new stage.  And while typical two-year-old behavior is often “boundary exploring” at best (let’s be honest.  “Naughty” is a better word.), it is impossible not to feel equally overjoyed and overwhelmed that she can now stand up at the refrigerator and pull down every single picture, magnet, calendar, and momento that was unreachable, or uninteresting, two days ago.

Bring on the Terrible Twos…

  

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Finding a place in the Land of Mom

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…  

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Mom Kryptonite

I will just put this out there: I find it completely impossible to be an effective parent while wearing skinny jeans.

I don’t know, it might be just me, but hey, God has blessed me with a curvy figure, so those skinny little leg holes don’t have quite enough room to fit my calves (and let’s not even talk about the lack of support for my hips and leftover baby belly).  Sometimes, I get a little brave and throw them on when I’m hanging out with my kids.  It always seems to be on a day when I’m going somewhere in public and inevitably, as soon as I’m dressed, Ellie’s hands suddenly seem to be coated with a thin layer of butter and everything she touches falls to the ground.

Is it really possible to bend over and pick anything up gracefully while wearing skinny jeans??

I share this because when I put on the skinny jeans, it’s like kryptonite for my mom-ness (surely not a word, but yeah.) and while sometimes that’s ok, I feel like being a mom is so ingrained in me right now that losing any of the Mom Super Powers gets me totally off-kilter.

Case in point:  Last weekend, John and I hit the city with some childless friends of ours.  The girls were with my mom and dad over night, we were staying downtown… I decided to rock the skinny jeans.  And high heels.

Please understand that, for my entire life, I’ve been an early-to-bed, early-to-rise kind of girl.  This extends far beyond the years that I have had babies, but at least before the children, 10 pm didn’t seem like the middle of the night.  On this particular evening, we had dinner reservations at 8:00 (gulp.) and then tickets to a comedy show at 10:30 (people actually go out of their homes that late at night??).  “Have fun!” they said. “You need to get out and live it up!”  they said.

In my fresh, hip, and completely impractical outfit, hot dang, I was invincible.  Don’t get me wrong, I had a blast.  We had great conversation, I got to drink a glass of wine uninterrupted (but only one because Good Lord, I can buy two bottles at Meijer for that price) and have adult conversations… It was fabulous.  So fabulous that we decided to keep the evening going until the wee hours of the morning.  Irresponsible, but fabulous.

One week later, I am still tired.

And those jeans?  They have been banished to the back of my closet, hidden under a pile of more reasonable boot-cuts, until my next temporary lapse in sanity.

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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 #30: Things I’ll never say again

1. “As long as it’s healthy.”

It doesn’t matter.

I said this a lot during both my pregnancies – especially when people would ask what gender we were hoping for. It was an easy response… “Oh, we don’t care, as long as it’s healthy.” I worry a lot about that qualifier and the message it sends to other parents – as if anything less than healthy makes a child unwanted. Nobody wants their child to hurt. However, I really cannot say that I would prefer a child without extra needs. In this family, if a child is not healthy, it will still be loved.

2. Is he (_____)ing yet?

It doesn’t matter.

It’s become a predictable habit of mothers these days to talk at length about what babies are doing. We share their weights and heights like trophies of our success as mothers –
the bigger, the better. It’s silly, really. And to a mom who is worried about her child for any given reason, it can be alarming.

I’ve said this before – it’s very freeing to have a diagnosed child who we know is on her own schedule for pretty much everything. But for those children who have no extra needs and are just a little behind, or those who do have extra needs but aren’t diagnosed yet, the comparisons can be unsettling. Even scary. So I’ll leave the milestone questions to the doctor.

3. Can I hold the baby?

When offered, I will, on occasion, accept. However, I’m not asking for the simple fact that I don’t want a mom to have to feel awkward about telling me no.

When Tessa was a new baby and people asked to hold her, it freaked me out. This really wasn’t about the germs, it was about her floppiness, lack of head control, and preference for hyper-extending her arms. I once (jokingly) asked the PT if I needed to coach every person who held her, fully expecting that she would tell me no, as long as it was a short period of time. And then she said “umm…. Unfortunately, yes.” Oookee dokee. It got really awkward for me, trying to explain to so many people why they couldn’t just hold her like they want. And since you can’t always “see” extra needs, nor do you know if a mom is uncomfortable saying no, I prefer to just avoid the situation altogether.

There is no need to walk on eggshells around other moms, but sometimes, a little empathy… a little consideration for others and their stories… that is what can make all the difference in our interactions with each other.

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Lesson #19: Occupational Therapy: No occupation required

The most recent addition to Tessa’s therapy regimen is Occupational Therapy (OT). Around six months, we noticed that Tessa wasn’t really engaging her hands. In fact, she spent most of her time with her hands balled up tightly in fists. There was very little reaching for objects and if she actually got hold of something, it was released almost immediately. At her IFSP review, we all agreed that it was time to add weekly OT.

OT focuses more on the fine motor skills required to function. Since starting with Kate, Tessa’s therapist, we have seen great strides in her ability to use her hands. She will reach for toys and play with them. She plays with her toes. When on her belly, she will use her arms to push up. Most of the time when she does that, she has her hands open.

We are still fighting with her left hand. She has a tendency to keep a couple of her fingers curled up when she’s pushing up onto hands and knees. She grabs more frequently with her right, using her left to stabilize her body. In therapy, we work a lot with engaging the left. Her issues are small, but on the radar.

OT is one of the therapies that Tessa gets at daycare, so I don’t have a lot of info about what a session might look like. However, Kate sends me detailed notes so that I can see how she did. Right now, just like in PT, we are working on sitting and playing with objects. We have to get Tessa to build strength in her core so that she can stop counting on her hands for stabilization. Kate puts her in a lot of different positions (belly, knees/hands, sitting, etc) and then uses different toys to motivate Tessa to reach for them. We’re also working on getting Tessa to hold her own bottle.

OT, PT, and Speech are once a week for an hour. The last therapy, saved for tomorrow, is Developmental Therapy. More on that tomorrow!

Sitting at 6 months (see the hands?!)

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Sitting now… Progress! (Also, the only happy Bears fan in the USA today)

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Lesson #15: We owe a lot to parents of the past

This is part of the 31 for 21 Blog Challenge!

I’m cheating a little tonight…. not because I don’t have time to write.  Actually, one thing I DO have tonight is time.  However, I want to share the words of another mom… words that I’ve been trying to find a way to express for quite some time and frankly, she does a better job than any of the drafts that I have come up with.

Please click below to read…

To the Mother of the Adult Son With Down Syndrome in the Grocery Store Today

Tessa, 20 days old

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In which we begin again

Another school year begins tomorrow. That blissful stretch of open road that lay before me back in May has now reached a dead end. Or maybe one of those intersections where you have to turn left or right into a hectic routine. You can’t continue on the open road of summer forever… not in this house.

In two separate and totally unrelated incidences, my mom and father-and-law turned to me as I was playing with Tessa and said the exact same thing: “You’re really going to miss her this year, aren’t you?” This statement has given me pause because it isn’t something that anyone has said to me before in regards to either of my children. Not when I returned after maternity leave, not at the end of any other summer break… not ever. I adore all of my family members, even my husband ;), so I’m trying to put my finger on what exactly it is about this child that makes the separation more intense.

Basically, it’s because I’m a control freak. I mean, there is that sweet smile that sends us all over the moon (especially me), but let’s be honest here. In seven and a half months, I have missed exactly one doctor appointment and 1.5 therapy sessions out of a zillion. This school year, Tessa will have both OT and Speech at daycare without me. I may have to miss a doctor appointment here and there. And I’m not done training John on how to best keep track of information for me! It’s a forced transition into letting go just a little bit. That’s good for me and my child.

To be frank, my brain needs a break from Google. I spend every spare moment networking, researching, reading about Down syndrome. It makes me a little bit insane. It’s unneccesary. It doesn’t do any of us any good. I am determined to provide Tessa with a quality life with many choices. I don’t want to “cure” her or to change her, but instead hope to create an environment in which she can thrive. I can do that best by giving my brain a break and the best way I can do that is to begin the school year again. So off we go!

And now, cuteness:

Tessa helped us get the room clean in the best way she knows how…

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I just love this picture that my sister took…

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Ellie and Tessa, hanging out as sisters do…

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And finally, Tessa’s first toenail polish…

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