Yo soy La Lay

adventures in family, faith, and Down syndrome

On trusting one’s intuition

Sometimes, I’m really good at listening to my intuition as a parent.

And sometimes, there are moments like last night.

I should have heeded our sitter’s warning when I picked up the children.  I always love the moment when I arrive to get the girls after a long day of work.  All of the kids come wobbling toward me, a little bit like Children of the Corn, babbling some nonsense about their day, all at once, none of it the least bit coherent.  “They are wound up today!” she tells me.

I got this, I think to myself, with no concern over my impending night of single parenting.  Ellie had been asking us to order pizza all week.  I’d pop in a movie, call up Vita Bella, and put the girls in bed a little earlier than usual.  No problem.

In this moment, I made my first fatal mistake: when Ellie wouldn’t put her shoes on and I was anxious to get home, I told her that I had “secret, fun plans” for us.

Through a series of unfortunate events, mostly due to the fact that Ellie had given up on her burning desire to eat pizza and still wanted “secret, fun plans,” (which I didn’t actually have), we ended up at Red Robin.  I knew it was a bad idea.  Every little voice in my head screamed “No!  Not tonight!”  and I ignored them.

If you aren’t familiar with Red Robin, it’s a hamburger joint that has generally been a really family-friendly environment (read: it’s incredibly loud).  Recently, our Red Robin has gone through a little remodel… they now have three “unofficial” sections: the adult (bar) section, the section for Parents Who Have It Together, and the Frazzled Parents and Loud Parties section.  There is a glass wall that separates the latter two sections, most certainly so that the Parents Who Have It Together can enjoy the show on the other side of the wall.  I’ll let you guess where they sat us last night.

Frazzled Parents, unite!!

In the instant that we sat down, Tessa decided that she was starving.  We have entered a phase of life where she can’t well communicate her needs, so there is a lot of growling.  Yes, growling.  Loud and forceful growling.

Three seconds later, Ellie told me that she needed to go to the bathroom.  Now I, as a parent with great foresight, knew that Ellie loves to check out public bathrooms and not actually pee, so I made her go before we left the house.  So, when she asked, I calmly told her that she would have to wait until we got home, feeling confident that she had just emptied her bladder.

Even after three portions of dinner and several soft pretzel bites (which I later found stockpiled in her cheeks and the roof of her mouth), Tessa continued to be starving.  She had had enough of the crummy, unsupportive high chair.  Ellie’s crayons were dropping all over the floor.  There was a lot of ketchup everywhere.

Before I knew it, Ellie was standing on her chair, announcing to me (and what felt like everyone in a five-table radius) that she needed to go the potty right now or the poop was going to come out of her butt.

I really need to listen to my intuition more often.

Our rockin’ night wrapped up soon after we go home… a lot sooner than Ellie would normally go to bed, in fact.  Later, I dozed off on the couch, only to be awoken by chubby little fingers poking at my cheeks and nose.  Tessa had been sitting on my lap, drinking her last bottle of the night, and was looking for more.  She smiled up at me with those little crinkly eyes and for just a moment, the events of the Great Red Robin Fiasco were a distant memory.

I can’t wait for tonight’s round two adventure….

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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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World Down Syndrome Day – A day in the life

Last year at this time, with my just-barely three-month-old nestled in little bouncy seat beside me, I sat down to write about life with a little one with Down syndrome in celebration of World Down Syndrome Day.  For as much as the children have grown in the past year, so little has changed.

I’ll be honest, this post about what life is like with a child with Down syndrome seems a little silly to me.  I’ve been working on it for a week now, trying to find some spin, something interesting or relevant.  Maybe it’s because she’s young, maybe it’s just because things aren’t really that different… we love our life and wouldn’t change a single, solitary aspect of it, but let’s be honest, it’s not exactly thrilling.

Our mornings still start early… I’m out the door by 5:40.  We can usually hear Tessa starting to stir on the monitor by then, but we let her stay in bed until John is ready to let the chaos begin.  We have also found that Ellie is a lot happier with life when she is woken up by Tessa’s babble rather than Daddy’s insistence that she get moving.  On the weekends, we have breakfast together.  Sundays, I make pancakes.  Otherwise, Ellie mooches John’s oatmeal.

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During the day, my kids go to our daycare provider while John and I work.  Tessa has great motivation to keep up with the kids around her; she so loves (and is loved by) the other children.  A couple of her therapists do her sessions there, otherwise she has them after I get done with school for the day at our house.

I pick the girls up in the afternoon and at home, Ellie watches The Pioneer Woman (every.day.) while Tessa plays and I finish up my work and check in with the mom groups that I am a part of through social media.

(I used to be pretty active in typical “mom” groups.  As of late, that has become… challenging.)

99% of the time, the girls get along great.  Just recently, we’re starting to witness the usual sibling annoyances:

Around 4:30, Tessa makes her way to the garage door, where she sits and signs “Dad” until he walks in the door.  We sit and eat dinner as a family every night.  Ellie is the slowest eater on the planet.  After dinner, there is almost always some kind of dancing.

Occasionally, we get the girls into the bath.  We pretend to fight over who gets to put Ellie to bed while the other feeds Tessa and wrangles her into her pajamas.  By 7:30, both girls are asleep, I’m mostly asleep, and John’s enjoying his quiet time on the couch.

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I would not change a thing.

Every 24 hour period is a blessing.  Every second that we get to spend loving each other is precious.  Our family’s minutes and hours are not much different than yours.  I hope you can see that, feel that, believe that… and include others with Down syndrome in your life right along side us and our little girl.

For more stories, visit adayinthelifewithdownsyndrome.com.

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3 Decades

A very special kind of countdown has started and I’m super excited about it!

(No, Mom and Mom-in-Law, I’m not pregnant.)

Today, I am celebrating the beginning of my 144-day “make fun of John because he is 30” extravaganza.  I only get 144 days because of course, then I will be 30 also.  But for now…. let the fun begin.  🙂

As I’m sitting here, he is telling me that he does not want a post in celebration of his birthday… which is fine, because this isn’t about that…. it’s just about him.  I have done exactly what he told me.  😉

I had to laugh today, going through old pictures of him, because I was trying to find just one to share here in celebration of him.  it’s impossible.  I don’t know if there is just one picture that can really embody his accomplishments, his determination to provide for his family, his devotion to us and to the girls and to God.  This is a remarkable man.  And for all of the amazing things that he has worked so hard to provide for us, these are the things that I love the most:

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Signs of Spring

We waited in a line for the car wash today that was 10 cars long.  35 minutes, sipping my decaf iced coffee, listening to Ellie chatter in the backseat about how, now that she’s three, she’s brave in the car wash.  When she was two, she tells me, it was too scary but now, well, now three means that she isn’t afraid anymore.

“Mom?  Maddie’s mom died and now she lives with God,” she tells me.  “And I’m going die too, someday.  And who else lives with God?”

I took a long sip after that question.  Seven cars in front of us still.  I guess we’re having that conversation.  Again.

Winters are harsh in Chicago.  The wind chill, the salt on the roads… But now, there is a palpable energy in the air.  SPRING.  It’s 30 degrees warmer today than we have felt in months.  There is sunshine.  There are puddles.  I’m sitting by the back door watching Ellie play outside.  She’s still wearing a coat and picking up what is left of the (filthy) snow, but when her cabin fever got to be too much, it didn’t take me 20 minutes to bundle her up enough to send her out the door.

John, too, is suddenly out of the winter funk.  As soon as he saw a 50 in the forecast, his winter doldrums switch flipped off.  He’s barely cognizant of his 30th birthday coming up in a couple of days.  He is, quite literally, ecstatic.  He’s always been this way.

I’m more cautious with my optimism than the rest of our little family.  It has been a long winter and I’m not convinced that she won’t rear her ugly head yet again.  But still, I’ll wash the road salt off the car and pack away a few of the heaviest sweaters, hopeful that we have turned the corner for good.

For what it’s worth, I’m thankful for the winter.  It makes the spring so much more special.  Such is life.

One year ago…

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loss

Only once in a blue moon do I check my Facebook or Blog Reader for updates in the morning as I am getting ready for work.  Yet earlier this week, something moved me.  I opened my WordPress app to find the news that one of my dear blogging friends, Tessa, had lost her baby girl in the wee hours of the night.

There are no words.

I have waited this week for my brain to make sense of this loss, to find the right way to express my feelings and to offer some kind of condolences to Tessa and her family.

I just can’t.  There is simply no right way to say I’m so sorry, to take away any of the pain, to carry her grief on my own shoulders for even a moment.

If you can, please light a candle in remembrance of Eva tonight at 7:00 pm (central time).  That is the time that her own family will be celebrating her life in New Zealand. Tag it #theoneinamillionbaby so that Tessa can see the outpouring of light for Eva from around the world.

Go rest high on that Mountain, Peanut.  You are so loved.

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My political rant continued.

“Don’t worry,” they tell me. “Tessa has Down syndrome, which is an automatic qualifier. Her services aren’t affected by these changes.”

That is a dangerous line of thought. And it’s SO not the point.

As I shared earlier – this is not just about her. She is one face in the world of disability, but she is not the only face. It’s about taking care of families, taking care of children.

The reality is that there are many, many children who do not have “automatically qualifying diagnoses.” The laundry list of delays that I laid out earlier could be any child, anywhere, with or without Down syndrome. And a choice to leave them to fend for themselves is cruel. It’s inappropriate. It has long term consequences that we cannot even begin to understand.

Once we begin to remove supports for individuals with disabilities, we limit their potential. Once we have told them that they aren’t worth our resources and efforts, we take a step backward in our development as a society. We devalue an entire population.

I won’t stand for it. And I won’t change my message. This has to be stopped.

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A political rant – and I’m not apologizing.

I now live in a state where the governor believes that providing Early Intervention services for infants and toddlers who are less than 50% delayed is “financial recklessness.”

Early Intervention has been my lifeline, my saving grace, my hope that if we can get her started on the right path, she can accomplish her dreams. And though the path will be challenging, there has been support and structure and light for our journey.

However, my child is not more than 50% delayed.

In the proposed budget, presented today by our newly elected governor, my child would lose her therapy services.

My child, who has just mastered crawling on hands and knees while her peers are starting to walk.

My child, who has just barely begun to sip from a straw while her peers are long off the bottle.

My child, who is miles from any words, while her peers have begun saying Mama and Daddy and other first words for weeks.

My child, who ate pudding on her first birthday because she cannot manage solids while her peers fed themselves their own birthday cake.

My child, who has come so far and has worked tirelessly for every. single. milestone.

I literally feel as though I am going to throw up.

Life is not fair. I have never expected it to be. But I’m angry. Livid. Because this isn’t just about me and my family – it is about society and values and about being a human being.

I want out. Out of this state. I want to throw a tantrum and yell and kick and scream. And then I want to strap Tessa in her car seat and drive on over to the governor’s mansion and interrupt his lovely dinner to ask him a few direct questions. When did we decide that it is just fine not to take care of our own?? When did we decide that it is dandy to cut from our most vulnerable of citizens who live in families (like mine) that otherwise cannot afford to provide them with the therapy services that they need?? Why is that okay with ANYBODY??

My direct statement to my family and friends who voted this man into office (because I know you are many) – is that I am begging and pleading for your support in fighting this proposal. It is not what is best for our children. It is not what is best for our state. You elected him into office and he is now dismantling every support that my family relies on – I urge you, please contact your representatives and ask them to fight these changes to Early Intervention. This cannot move forward.

End rant. For now.

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On abandonment

We’ve all seen the latest story that is trending on Facebook… you know the one, the story of the father who is (allegedly) choosing to raise his son, diagnosed with Down syndrome at birth, in spite of the mother’s choice to (allegedly) abandon the child.  You can google the story if you haven’t seen it already.  I honestly can’t decide if any of it is credible enough to merit a link.  What I will say is this:

I will not demonize the mother for the choice that she seems to have made, nor will I canonize the father for taking his son to New Zealand in search of better opportunities.

While the choice to leave my child to be adopted in the face of her diagnosis is clearly not the choice that I would make, understand that I am part of a strong and loving marriage, we aren’t rich, but we are comfortable enough, and we have the support of family and friends.  Sometimes, the most loving thing that a birth parent can do for her child is to recognize that she is not in a place to provide what is needed.  And there are many loving families desperate to welcome a child into their homes.

More importantly, I beg you, do not be naive enough to think that these very scenarios do not play out in hospitals across the United States.  Many doctors (thankfully, not mine) deliver diagnoses like these as if they are devastating, miserable, horrific occasions.  It’s not just Down syndrome – any deviation from the neurotypical path is scary, but it does not have to be a death sentence.  And while the gender of the ‘parent who stayed’ is often reversed, there are relationships that fall apart in the face of all kinds of adversity – including the strain of a child with special needs.

We will commend the father for providing for his son, but have we abandoned our own?  Will we invite the little boy with Down syndrome in our son’s class to his birthday party?  And then truly and genuinely allow ourselves to see him as just another 8-year-old boy?  Will we set up a playdate with the neighbor’s daughter who has autism?  Will we accept a child with a severe learning disability into our classrooms and do everything we can to support his desire to learn?  Do we refuse to abandon the children who live in our own community?  Without patronizing, without any air of superiority or feeling of having done a good deed… if you want to make a difference in this world, this is your chance.

Pray for the families that struggle under the strain of a world that has not yet found a way to embrace their child.

Encourage inclusion, acceptance, kindness, and compassion.

Let your actions serve as example to others.

Choose love.

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Inside and out

Look, I’m not a fan of the cold.  I’m sure someone could make the case that I’m really missing out by not playing with my kids in the snow, but really, I’m just fine with taking the pictures and making hot chocolate (recipe at the end).

Plus, on the inside, we have just as much fun.

At 6:15, Ellie woke up, looked outside and gasped.  “It’s Christmas!” she exclaimed.

Well no, not quite.  It was still dark outside and she was desperate to head out.  I managed to keep her calm until precisely 7:22 am.  Then I gave up.  When I told John I was sending her out, he look at me with giant puppy-dog eyes… “Can I go out, too??”

I bought this snowsuit a little too big last year and made it work.  This year, it’s a little too small, but still works.  Two years out of one snow suit?  That’s a parenting WIN in this house!

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 Dora umbrella is back!IMG_7571

IMG_7569The first trek out was considerably calmer than the afternoon madness.

A kid in ski goggles… too much.IMG_7583

Blizzard Conditions… no kidding.
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She doesn’t have the attention span to build a fort, so this will do.IMG_7589

And on the inside, I got to enjoy… this:

IMG_7576I win. 🙂

Our favorite hot chocolate recipe

1 cup milk

1 tablespoon sugar

1.5 tablespoons Hershey’s unsweetened cocoa powder

1 handful of semi-sweet chocolate chips

Throw everything into a pot, heat it until the chocolate is melted, serve in a mug with marshmallows.  All these ingredient amounts are total approximations, so good luck. 😉

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