Yo soy La Lay

adventures in family, faith, and Down syndrome

November, in a nutshell

I cannot believe that we are almost to the end of John’s Master’s Degree program. He and I embarked on our journey of earning our degrees when Ellie was 6 months old. I finished 4 days before Tessa was born. In less than a week, John will join the club.  He tells me that, at 67 pages, he is done writing and that all he has left are some citations (which, at this point, I’d really like to just do for him so that it can just be done, but of course, I won’t, because playing with Tessa and Ellie is more fun than researching APA Style). Craziness (and crankiness) hit their highest point last week and we’re coasting into the finish line now… Here are some pictures of life lately…

Did I post this yet? I can’t remember, but it’s worth repeating anyway..

IMG_6659.JPG Trying to stay warm in our most recent snap of cold weather: IMG_6677.JPG     Tessa loves to play “sooooo big!” IMG_6706.JPG   We celebrated my nephew’s second birthday… this is my sister, sister-in-law, and I with our kiddos… IMG_6712.JPG   Sticking out our tongues in solidarity with Tessa 🙂 IMG_6766.JPG   So serious today…  IMG_6762.JPG   A little happier in this one.  🙂 IMG_6734.JPG   The media center at my school is having a “Shelfie” contest… Here’s our entry… IMG_6759.JPG   We put up our Christmas decorations a little early (sorry, Mom) and Ellie decided that Baby Jesus needed a check-up from our dear friend Doc McStuffins. IMG_6771.JPG   Holding her own bottle is super hard work!! IMG_6776.JPG  Sister love. ❤

IMG_6772.JPG

2 Comments »

Lesson #31: There is beauty in this change

This is the last post of the 31 for 21 Blog Challenge!

This is my most important lesson.

Upon returning from my summer Study Abroad program in Ecuador during college, I did something completely uncharacteristic of me: I got a tattoo.

Evidence.  And, a new ab binder.

photo (18)

If you were to line up my brother, sister, and I, I’m fairly confident that no one would peg me as “the tattooed one.”  I still wonder, on occasion, if the tattoo that my brother got was simply an effort to not be outdone by his nerdy sister. He would never admit it, of course, but still…

(On an unrelated side note, I think that my dad was more than shocked by this.  In the weeks following The Tattoo, he wrote the word “Hola” in permanent marker on his foot in silent(ish) protest and then showed it to me every time I saw him.)

In any case, the words permanently stenciled on my left foot are a quote from the Cuban revolutionary Che Guevara. Controversial, I know. In Spanish, it says, “Let the world change you, and you can change the world.”

Never has this been more relevant to me than it is now.

When I think back to my old high school yearbooks, I remember a lot of the signatures urging “stay sweet!” or “don’t change.”  Um.  Thank God I am not the person that I was when I was 17.  Seriously.  With time comes perspective and if I could re-sign all of those yearbooks now, from the eyes of my almost-thirty-year-old-self, my message would be quite different….

Change.

Change every day.

Don’t harden your heart when you experience struggles.  Grow.  Learn.  Experience.

Change.

Listen to the stories of others.  Open your heart to what they are telling you.  Seek to understand, to support, to love.   Be compassionate, caring, empathetic, kind.  Take what they have to show you and make a difference.

That is all we can do to leave this world a better place than how we found it.

When I think about little Miss Tessa and her place in this world, my prayer is that others will seek to understand when they interact with her.  She doesn’t have to perform any great miracles or bust through any stereotypes.  But maybe, just maybe, she will teach someone how to love.  Maybe someone will connect with her in a way that will open their heart to more patience or acceptance.  Maybe her smile will make a difference on a bitter day.  Maybe including her in a classroom of typical children will be a greater lesson for her peers than can be found in any textbook.  Maybe cheering on her successes will create advocates in unexpected places.

When we allow the experiences of others become a part of our hearts, we can change the world.

Will you let her change you?

J Sync 6 5 14

 

2 Comments »

Lesson #24: She’s just another leaf

I have had very few negative thoughts regarding Down syndrome.  But I’ll let you in on a little secret: for several hours after she joined our family, I was terrified about family pictures.  Somehow, in my brain, I had decided that family and friends would no longer want to take pictures with us because they would not want to have a picture of Tessa hanging on their living room wall.

This is, without a doubt, the most ridiculous thought that I have ever had, bar none.

(Except for maybe the night in college that I thought a bottle of Jack Daniels and some Dixie Cups would make for a good night.  But that’s a whole other story.)

Since she arrived, Tessa has been just another leaf on the family tree.  She’s different, but we all are.  And not one person in our family has taken her as anything less than that.

Being a part of the community of families with children with Down syndrome, I hear a lot of stories.  Most are positive.  Sometimes, however, a mom comes looking for advice on how to deal with family/friends who are struggling to accept her child.  There are families who refuse to acknowledge the baby, or who won’t hold it, or those who treat the child differently through words and actions.  My heart really aches for those families.  It also overflows with love and gratitude for my own.

(Just to clarify – when I say “my family,” I am talking about the whole dang thing, from both John’s side and mine.)

When Tessa was born, I did a really poor job of allowing other people to process our new situation in their own way.  No grieving was allowed on my watch.  Whether I should have let go of that control is a question for a different day, but in reality, I don’t think anyone would have grieved anyway.  Because this is how life really is:

Tessa has four doting grandparents, who love her fiercely and in completely different ways.  They are teachers, snugglers, cheerleaders, and many times, the glue that keeps John and I running smoothly when life is exceptionally busy.

She has aunts and uncles who hold her and play with her as they would any other child.  She adores them.  If there is one thing that we have learned about Tessa’s personality, it’s that once she has attached herself to you, her eyes will look so deep into your eyes that you’ll swear she’s looking right at your soul.  All of her aunts and uncles get those looks.

Tessa’s cousins make her giggle. They poke and prod her, motivating her to get moving.  They give her kisses and pull her hair and sit on her and take her toys just like they would with any other child.

I could not ask for more.

(this pic was taken by my fabulous cousin, Jessica.  It’s blurry now for lots of reasons. 😉 )wdowiarz pic

IMG_4575

photo (17)

IMG_5582

IMG_5837

IMG_4515

3 Comments »

Lesson #12: If I don’t stop blogging, I’m going to be in trouble.

This is part of the 31 for 21 Blog Challenge!

We just returned from a great weekend away.  My parents watched the girls while John and I had the chance to gallivant around our old college town, reminiscing about days on campus, sleeping in until 7 am (!), eating in nice restaurants… it was lovely.

We missed the girls.

Now we’re back and I’m supposed to help John paint our kitchen, which means that you don’t get to hear a lesson tonight.  Because really, if I don’t get my butt off the couch and pick up a paintbrush, there will be mutiny and I’ll have a half-painted kitchen for our Halloween party on Friday night.

That is all.

Three-week-old Tessa.  Too cute for words.

IMG_0507

Leave a comment »

Lesson #11: Daycare is just the right thing to do (for us)

This is part of the 31 for 21 blog challenge!

There was never a doubt in my mind that I would be a working mom. Some girls imagine themselves taking care of babies and running their households. That was never me. I do all of that stuff, but I also have a job that I love and my kids go to Miss Julie’s house for their daytime care.

I’ll tell you more about Julie when I have a keyboard and I can do her justice. For now, suffice it to say that she has been a true blessing for our family. My girls adore her and her house.

What I love about daycare for Tessa is that she is totally thriving surrounded by older, typical kids. While playing with her sister gives her some exposure to words, movement, big-kid stuff, play at daycare is even more busy and complex. It has been her normal life routine for so long, since she was just three months old. It’s good for her. Case in point:

IMG_6432.PNG

Julie sent me that picture yesterday. It looks boring enough, just four kids hanging out around the box of Frozen toys. But the amazing background story is that Ellie and the other two were playing excitedly with these toys and Tessa army-crawled her way across the room to see what they were playing with. Motivation. Example. Acceptance.

She is in the right place.

1 Comment »

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: “I’M NOT SOPHIA”

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-”

Her: “I’M NOT PRINCESS ANNA”

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. 🙂

IMG_6331

4:30 am Tessa

8 Comments »

The Halloween Debate

About a week ago, Ellie announced to all of us that her costume of choice for Halloween is “a potty.”

Digest that for a moment please.

I’ll be honest, I am totally frantic about this. John is not. As a matter of fact, I would say that he’s practically giddy about her choice. That’s what happens when you teach eighth graders all day long.

I have attempted to change her mind, offering amazing costume after amazing costume to entice her interests. Frozen? We can do Frozen! Dora? Doc McStuffins? I’m desperate enough to let her be a princess!! I am failing. For a brief moment last week, she decided that her costume would be “Ellie,” but after only a few hours, we were back on the toilet train.

At what point do I put my foot down and force a reasonable choice? Or should I just swallow my pride and let Ellie deal with the embarrassing pictures when she’s 18 and creating a slideshow of pictures for her high school graduation?

My strategy, for now, is compromise. Yes, you can dress like a potty at our Halloween party, where our family and friends know us and won’t think we are nutcases. No, you can’t wear it for Trick-or-Treating. I think that’s fair. Maybe even reasonable.

Why do I feel like this is foreshadowing my life when she’s an adolescent?

IMG_6341.PNGIMG_6340.PNG

11 Comments »

Nine Months

Well, the car seat carrier is getting heavy.  I’m not sure how much longer I will be able to cart my sack of potatoes around in it without enrolling in a gym to build up some muscles.  One of my most favorite things about Tessa is the fact that she literally melts into your shoulder when you hold her.  It’s a product of her low muscle tone (meaning: it takes her more energy to get the muscles going than is typical) and I adore it.  However, when it comes to her being carried in a car seat or otherwise, she gets heavy fast.  With little to no assistance from her own muscles, mine are tired.

I bring this up only because we had a nine-month visit with Tessa’s pediatrician today and she is tipping the scales 😉 at almost 17 pounds and 26 inches these days.  She’s essentially not on the growth charts for height or head circumference, though not surprisingly, her weight was on the percentile charts.  On the old, no-longer-in-use Down syndrome growth charts, she’s at a solid 50th percentile in all areas and continues to grow.  And, as John so correctly noted, she’s in the 100th percentile for cuteness.  For comparison’s sake, she’s about the size that Ellie was at 5 months.

(Yes, I did run home and check Ellie’s baby book for that comparison.  But, for the record, I was only trying to determine how much longer I might be able to keep Tessa in the six month clothes, based on what Ellie was wearing.  I think we’ll get through the fall and maybe part of the winter…. yippee!)

With good reports from cardiology, her ENT, and her eye doctor, we are thankful to have a little break from appointments until the end of the year.  We don’t have to go back to cardiology until she is about 2 and a half.  They are still monitoring the very, very small hole that Tessa has between the top two chambers of her heart.  It is causing no issues and we fully expect that the hole will close on its own in the next couple of years.  If not, she may have surgery at around 3-5 years of age.  No ear infections recently, tubes are still in, eyesight is normal, clogged tear duct resolved months ago… we’re in good shape!  For once, when the doctor asked for any changes to her medical history, I had nothing to add!!  Tessa did get her flu shot today as well and took it like a total champ.  She puffed out her lower lip a bit, but there was no horrific, blood-curdling scream as her sister tends to do.  We had originally thought that Tessa might be our drama queen, but I have to tell ya, she is not showing any signs of being dramatic at this time.  Let’s keep it going.

I’ve been oddly reflective over the past couple of weeks, but am saving my posts up for the 31 for 21 Blog Challenge that I will take part in during the month of October (which happens to be Down Syndrome Awareness Month).  More details coming soon…. And since my crazy schedule is keeping me from taking a tremendous number of pictures these days, I leave you only with Tessa’s new sleeping position… and solid evidence as to why I pick out the girls’ clothes every day (not John):

photo (13) photo (14)

At least they are just pajamas, but poor Tessa… 🙂photo (12)

1 Comment »

The longest yard

Ok, so not a yard… more like six inches… but still.  I’m not going to take two minutes of your time to talk your ear off today.  Instead, I’m going to share two minutes of Tessa that literally has me floating right now.

If you’ve been following Tessa for quite some time… or if you read my post about my defective child, what happens at 1:47 might just get you, too.  I watched the video about 4 times before I saw it…

To set this up, we’ve been struggling a bit to find things that motivate Tessa to move.  Today, I set up my iPhone camera to record her looking at herself.  This is what we got:

http://youtu.be/0cl3ER4jd38

8 Comments »

Giggles

Okay, okay, okay.  For heaven’s sake, enough with the Debbie Downer posts.

I mean, seriously.

Can I share some good?

First, this kid is potty trained:

photo (11)Why she wouldn’t smile, I’m not quite sure.  I just decided to join in with her.  And the cat face?  We went to a “Fall Festival” fundraiser for Down syndrome awareness,,, we aren’t really cat people, but Ellie likes to be different.

Anyway…. the potty training… it’s done.  They do it when they are ready, ya’ll.

Also, this kid laughs:

IMG_6178I cannot even begin to tell you what joy filled us to hear her laugh for the first time.  It caught us totally off-guard and it was AHmazing.  I have replayed the moment in my head a thousand times, hoping that the sound and the feeling never leaves my memory.  In the following video, you can kind of hear it.  Unfortunately, pretty much the only thing that makes her giggle (for now) is an obnoxious, fake laugh from John.  It’s a little tricky to hear her, but still worth the view, because her smile alone is rockin’:

Tessa is still rolling all over, pushing up on her arms and now gets to her knees pretty often, too.  She can’t really pull her belly up off the floor, but she is engaging her hands a lot more.  We have set a very loose goal of sitting by Columbus Day, crawling by Christmas, remembering, though, that she will do it all in her own time.  She is loving food of all kinds. We have yet to find a puree that she doesn’t like (of course, we haven’t ventured into the meat variety yet… eew).  She is “talking” up a storm, finally mastering a “buh” sound and sometimes a “duh.”  As her core gets stronger, she will be able to laugh more and make louder sounds.  She spends a lot of time folded in half, chewing on her toes, like lots of kids do.  She is infamous for getting stuck underneath the furniture.  We think teeth may be coming soon, as she is drooling up a storm and chewing on everything that she can get into her mouth.  Still, she is an awesome, easygoing, happy little baby.

And now, cuteness:

IMG_6179IMG_6183 IMG_6189

1 Comment »