Yo soy La Lay

adventures in family, faith, and Down syndrome

Lesson #9: Mornings are far more complicated

This is part of the 31 for 21 Blog Challenge!

(John decided that he wants to contribute…. so this one’s from him.)

The only reason I’m doing this is because Maggie is going to burn out if she doesn’t get some blogging help…and because her blogs need something funny as opposed to serious.

If you are a parent you must know the joy of getting your kids out the door (especially when you have somewhere to be).  My morning is funny.  Mag is out the door before the kids are awake and to be perfectly honest, she doesn’t have a clue about being under pressure.  I know what you’re saying… Maggie was with Tessa in the NICU, Maggie was at Tessa’s ear surgery all alone, Maggie works with the therapists to help Tessa…but she doesn’t get the joy of helping these little humans look presentable before day care.  Therefore, she doesn’t know real pressure.

Here’s a story about real pressure:

This morning Tessa wakes up at 4:00 am because apparently she’s trying to get a head start on daylight savings time.  We have a talk while she eats her bottle.

Me: “Tessa, you need to sleep in later than this.”

Her: “Dad, you need to wake up earlier, today is a new day and you’re wasting it by sleeping.”

Me: “Yes, I understand your point, but you see, Daddy needs rest in order to have patience with your sister.”

Her: “Look, when you share a room with her then you can talk to me about patience, until then, just pass the formula.”

Then Ellie is awake.  At this point we are playing fictional character lottery.  What is fictional character lottery you ask?  Well, every morning when Ellie wakes up she is reincarnated as one of her favorite characters.  It could be Anna, Elsa, Aladdin, The Little Mermaid, Princess Sophia.  In any case, I begin the egg shell walk because if I get the wrong character, our little actress will be upset.  I am a lawyer during cross examination:

Me: “Good morning…Soph-”


Her head goes back under the covers and I let the anger hang in the air.

Me: “What I meant to say was…Good morning…um…Anna of Arond-”


I’m 0-2.  Third time is a charm or a strike and by now I’m going to be late as it is, so I may as well just keep throwing out names.  I say the entire cast of Frozen in 2 seconds.  She is staring with a look that says, If you think for one second that I’m going to reveal my identity this easily, you should turn around, walk to the bookcase, and re-read What to Expect When You’re Expecting.  Because in that book it clearly states that I AM NOT AN INFANT!

I let her pick out her clothes…part pajama, part scuba gear, and give her some goldfish crackers so I don’t awaken the hangry beast.  Meanwhile, Tessa needs to get dressed.  She wears something cute because she doesn’t realize she is opinionated about what Mags puts out for her to wear.

Ok, Let’s recap…Tessa is dressed, Ellie is dressed.  Here comes the hairbrush.  Combing Ellie’s hair should not be the dramatic scene that it becomes.  Never having had long hair, I suppose I am more sensitive to her “pain” when she gets her hair brushed.  She is able to avoid me at every turn.  If Ellie could move all day like she moves when she is about to get her hair brushed, I would sign her up for the NFL and put her on my fantasy football team because no one could catch her.  She’s like a greased chicken (if there is such a thing).

When I finally set her down to brush her hair we have a heart to heart.

Me: “Ellie, you have to get your hair brushed so you can look presentable”

Her: “Go brush Tessa’s hair, please”

Me: “Tessa doesn’t need her hair brushed, you are the person who needs their hair brushed.”

Her: “Can I brush your hair?”

So, of course, I let her brush my hair to be an example of courage in the face of the comb.  She begins to brush my hair and she looks at me and demands, “Cry.”

Me: “I’m sorry?”

Her: “Cry when you get your hair brushed.”

Me: “You want me to-”

Her: “Cry.”

I shed a few pretend tears and we trade places.  She sits patiently now that justice and fairness has presided over our situation and her hair is now brushed.  (Although, it still looks terrible because I tried to put it in a ponytail but it never looks as nice as when anyone else puts it up).

The finish line is in sight.  We are almost to the door.  We walk to the car.  We sit.  We belt.  We smile.  We realize we have left our favorite pink fleece in the house.  We need to get it.  We will not be calmed.  We will not be reasoned with.  We will all go back in to the house together.  We are now wearing the fleece.  We drive.  We arrive. We drop off.

I realize this ranting sounds like lies and exaggerations.  This is real life.  It is our life. Well, ok, Tessa can’t really talk, but that is a minor exaggeration.  But I didn’t tell you the best part.  When I drop them off they become two great, well-behaved kids (95% of the time).   I wish Ellie a great day and tell her I love her.  She promises me that she will be more well behaved in someone else’s care than mine.  Tessa smiles…it looks like a pity smile but who can tell.

I can’t emphasize this enough…This is not a complaint!  This is hilarious.  I truly wish you could have this experience because while the pressure is on, the time is crunching, and when everything seems like its falling apart… these kids make me laugh… They’re both nuts!  They fit right in. 🙂


4:30 am Tessa


Lesson #1: We ain’t slowin’ down.

I thought a lot about how I wanted to start my Blog 31 for 21 Challenge.  I have a list, you know.  Of course I do.

Instead of my awesome blog start, I got work, work, double work, paperwork, pick up kids, migraine starts, football game, potty break in locker room, drive through dinner, beer.  Pajamas, prayers, teeth brushed, stories read, lights out, Extra Strength Tylenol, crash on couch, Peppermint Patty.

I think it lends itself well to one of my first lessons after Tessa’s birth: life isn’t going to stop just because of this diagnosis.  Sure, we cram in a few therapy sessions, sometimes we get sidetracked by an illness or a doctor’s visit, and Lord knows, we are on a different pace than we may have planned, but the world has not stopped turning because of Down syndrome.

We take the kids to restaurants and ice cream parlors.  We throw them into the car for road trips and family functions.  We still work, they go to daycare.  We have our parties and bonfires and go out on dates without them so that we can complain about how crazy they make us and how much we miss them when they aren’t around.  They have sleepovers at Mimi’s house and we go to church when we can and all of the things that have always happened still happen.

Life doesn’t have to stop when Down syndrome enters.  It may adjust, but it still marches on and we can make of it whatever we choose.

Love this!  Belongs in my classroom somewhere....


The State of Our Union, 1st Quarter 2014

It’s hard to believe that 2014 is (almost) a quarter of the way finished. Spring is taking its sweet time arriving in our area. It’s been a rough winter!

And so an update on the family:

John and I

No one really wants to know about the adults… but it’s 7 AM on a Saturday morning and we are both showered, dressed, and ready to start the day… and yet, our small bosses children are sleeping the morning away.  John is clicking away at his laptop, working on yet another grad school project and I’m sitting here with my ear pressed up to the baby monitor, desperately hoping to catch the moment when Ellie wakes up and realizes that Tessa spent the night in their room with her for the first time.  Tessa has finally graduated from her pack n’ play-in-the-closet set up to her crib… but I digress.  I’m talking about the adults, right?  John’s at the point in his grad school that I was exactly one year ago.  He’s tired (I’M tired) and feels like there is no end in sight.  He’ll be finished in December and perhaps then we’ll have just a tiny bit of an ease in the chaos of life.  Of course then I’ll probably get the itch to go back to school or I’ll take on some project that I really don’t have time for and we’ll be back to crazy.  I think we kind of like it that way anyway.  So John is grad-schooling and coaching and teaching…. and me?  I’m kind of jealous.  I just really need to go back to work.

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Our crazy (CRAZY) child has had another explosion of language growth.  She’s already very verbal for her age, but now she’s connecting ideas and feelings, asking questions that are complex and interesting, and singing songs that are incredibly inappropriate for a two-and-a-half year old (totally my fault…….).  She’s still a total klutz.  My mom tries to tell me that she’s just too busy to really be careful where she is walking, but I’m fairly certain that she’s just the kind of athlete that I was…. not an athlete at all.  We all have our strengths and weaknesses.  She and I went out for a Mommy/Ellie date this week at Red Robin like we used to do before Tessa was born.  We even got dessert.  🙂

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And then there is the peanut.  She’s just about THREE months now.  Suddenly, she’s very smiley and engaging.  She’s making some other noises than crying.  Her first noise was an “are you kidding me??” yelp.  Now there are happy coos as well.  Her physical progress is… progressing.  In PT, we’re using some kinesio tape on her belly to help her build up strength in her core.  She’s not able to lift her head up as well when she has it on, but I’ve been assured that she’s not regressing, she just has to re-learn to lift it using the correct muscles and posture.  She also gets to start wearing “hip hugger” pants to keep her frog legs from turning into a long-term problem.  We’ll see the developmental therapist next week, but I’m sure she will be happy to know that Tessa is smiling much more, maintaining eye contact (mostly with me), and when I move out of her vision, she looks for me.  Small victories.  And then there is speech.  No progress to report here with Tessa.  She’s still feeding in the side-lying position and doing well with that.  I’m also more comfortable with it – and getting more comfortable letting other people feed her in that position.  We were working on a transition to more upright, but she has had a cold for a few days and it’s hard enough to get the food in with a stuffy nose that we’re waiting until that clears up to experiment.  For now, the focus is on holding her differently so that she gets used to being in a more upright position.  We’re still doing some mouth-stimulating and working on the pacifier (though she has found her thumb and really likes it.  


I made the mistake the other day of pulling out Ellie’s baby book and looking at what she was doing at 2-3 months.  Well,  I don’t know if it was a mistake, but it certainly hit me like a ton of bricks that Tessa is just going to take longer to do what her sister could.  I’m wondering what this little girl is going to be like when she’s bigger!!  Who will she be?  What will she sound like?  What will she do?  Don’t we ask those questions about all of our children??  I’ve been forcing my way through the book Eat, Pray, Love for months (I have no idea why it’s taking me so long) and she wrote about these phrases that you chant through meditation to center yourself.  I don’t meditate (do people really have time to do that??), but I do have my own phrase running through my head when I get frustrated: she will do it, in her own time.  Sometimes I need to say it a lot, other times not at all.  But it’s a reminder to me that we’ll get there.  In her time.

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