Yo soy La Lay

adventures in family, faith, and Down syndrome

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…

IMG_4611

1 Comment »

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.

1 Comment »

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.

4 Comments »

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.

IMG_7558

3 Comments »

Don’t be a cry baby. (Please?)

Anyone who thinks that people with Down syndrome are eternally happy should come spend some time with us from 6:45-7:15 on any given night.

Good. Lord.

The phrase “scream like a banshee” has taken on a whole new meaning since our sweet little booger has decided that bedtime simply isn’t her thing. With every wail, I can hear her cursing us for leaving her in the dark. The best part is that her timing is unsettlingly perfect – just as you breathe that sigh of relief because finally, she’s calm and reach to take a sip of your wine, BAM. Just kidding! If she had words, I can guarantee she’d be yelling the ones you wouldn’t say in front of Granny.

I can’t say that I blame her for being upset. When you live as thrilling a life as we do, it must be devastating to miss out on the fun. Between the crossword puzzles and episodes of House Hunters that have been on the DVR for about 2 years, I sure wouldn’t want to sleep through any of the awesomeness.

We’re just bustin’ down stereotypes, one bedtime routine at a time.

IMG_7495

9 Comments »

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!

IMG_7565

 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.
IMG_7586

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. 😉

4 Comments »

She’s got the look

I forget that people see Down syndrome when they look at Tessa.  We go about our business day-to-day and most of the time, it doesn’t occur to me that people might notice… and then they do.  And every time, it sort of jolts me.

It happened twice this week, out of the blue.  A much older woman stopped me at a family party to say “I have a granddaughter who is special also.”

“Oh?” I responded.  Because how else does one respond to that statement?

“Yes, she has Downs.  She’s 22 now, I think.”

I just smiled and said “I bet she’s lovely.  This little child certainly is.”

Then today, much later after I had shown a new colleague some pictures of my girls, I absentmindedly starting talking about her weekly OT sessions.

“What is she working on with her?”  she asked.

“Oh, well, her hands…” I stumbled.  “I mean, she has Down syndrome, so…”

Her response was, “Well yeah!  The picture.”

Right.

It is everything and nothing.

And now…. cuteness.

The best ones are always blurry.

IMG_7455 IMG_7486 IMG_7506

4 Comments »

Life, lately

It’s been difficult for me to sit down and write these days. Not for lack of words, I assure you, but simply for an odd restlessness that had settled into my brain. (Hello, 3 am wake ups, can we be done now?)  We’ve had a lot of serious discussion happening in our home about our future and those talks have mostly drained my ability to look at computer screen and write it out.

I realize as I re-read what I just wrote that I sound terribly melancholy. Rest assured, I am not. As a matter of fact, especially this weekend, I have had a rush of peace with the whole idea of our new family adventure. We’re moving forward.  It’s all good.

Very quickly After, we knew the time would come that we would have to move.  For more reasons than I could possibly go into (not the least of which being the cramped quarters of a home we meant to move out of 3 years ago), it’s time now.  And because of the fabulous fact that we bought our house at the second-worst possible time in recent history, our move is going to involve a stint living at home with Momma and Daddy Dub.

I didn’t expect to spend the summer of my 30th birthday moving back in with my mom and dad.  Then again, I didn’t expect a lot of the twists and turns that I’ve taken in life, so we’re rolling with it.  We don’t necessarily have a timeline for selling our current place, which is nice because there isn’t much of a rush to pack it up.  We’ve started, but it’s not all-consuming.  True to my usual manner of business, I’ve got a few spreadsheets rolling to organize us.  No major task in our family is complete with out some help from Microsoft Excel!!

The kids are thriving lately.  Tessa’s annual meeting went really well.  The therapists have been really impressed with her progress and I was able to push for a specific goal that I think will target her communication skills.  We (very necessarily) have focused a lot on eating in the first year.  Now that she’s sitting, beginning to sign (yay!) and beginning to have more feelings and needs, I’m looking forward to working more on communication during our sessions.  We will continue to have OT, PT, Speech, and Developmental therapy each one time a week.  She’ll start wearing a Spio suit soon, which looks kinda like the clothes you wear for scuba diving if you ask me (though it is sleeveless and shorts, not pants).  You should know that we don’t live in a constant state of therapy in our house – that really, truly, most of Tessa’s “therapy” comes from trying to get the toys back that Ellie steals from her.

Just before we had our meeting, I ran across a quote on the National Down Syndrome Society‘s website that was a lightbulb moment for me. On the surface, I knew this, but the words struck me in such a way that I had a productive shift in mindset.  It reads:

The goal of physical therapy for these children is not to accelerate the rate of their development, as is often presumed, but to facilitate the development of optimal movement patterns. This means that over the long term, you want to help the child develop good posture, proper foot alignment, an efficient walking pattern, and a good physical foundation for exercise throughout life.

Ok, duh.  I know this.  But, for whatever reason, the statement that Tessa is 48% delayed in her locomotion (moving) skills hasn’t phased me simply because of this.  Because suddenly, the delay isn’t about me not putting her hip helpers on her for three days in a row.  She should wear them, yes, but it’s not about me holding her back, but more about teaching her to do it correctly.  Weird how things can strike you like that.

I look forward to telling you about my older child’s awesome development soon… at a time when she isn’t hanging off of my arm crying that I put too much milk in her cup.  Ah life… I wouldn’t have it any other way.

A picture of Ellie at hour 10 of an 11-hour Road Trip, just because.  She was 13 months at the time of this picture (same age as Tessa today).

IMG_2213

Leave a comment »

Basics, Year Two

One year ago today, fresh off our rocket launch into the world of Down syndrome, we (mostly I) started writing.  We began with the basics.  Today, an update:

This is what you should know about my family:

John – Husband. Age at this writing, just shy of 30. Married almost 6 years. Dad, teacher, coach, Fantasy Football Commissioner Extraordinaire. My best friend and favorite person on the planet.  Will give you the shirt off his back and then worry that he could have given you more if he had just thought of it at the time.

Ellie – Child #1, girl. Age at this writing, 3.5 years. Matter-of-fact, sweet, unapologetic, bossy. Self-described “goofball knucklehead bum.”  Still doesn’t color WITH you, but rather tells you what to color and expects you to do as you are told.  Uses a lot of big, adult words and phrases with perfect comedic timing.

Tessa – Child #2, girl. Age at this writing, 13 months. Active, sweet, chatty in small groups. Likes crawling around the house, dumping over bins of toys, and looking in the mirror.  Dislikes being left alone, especially at bedtime.  Her smile will melt even the coldest heart… as will her pout.  Has Down syndrome.

Me (Maggie) – Age at this writing, 29 (gulp.)  Educator (Division Chair/Spanish teacher/whatever else they need me to do). Personality? See Ellie’s description above. She is me, in toddler form (except for the whole “knucklehead bum” thing). I love inspirational quotes, chocolate, and margaritas.  I write for my family and my kids – but I’m happy to take anyone along for the ride who wants to join us.

Year two… let’s go!

6 Comments »

MLK Jr.

Darkness-cannot-drive-out-darkness

Let us not forget light and love…

Light and love.

We have a duty to make things better during our time on this earth.

For better or worse, you can choose how you will fight your battles.

I choose love.

Leave a comment »