Yo soy La Lay

adventures in family, faith, and Down syndrome

Lesson #25: This is good for the Big Sister.

“But what about Ellie?” John asked, just a few moments after he met Tessa.  “This isn’t fair for her.  We’re gonna die someday, Mag, and this will be all on her.”

I had no response at the time, other than “oh well.”  But as a little time has passed, and we have reflected on where we are going, the realization that we have both come to is this:

We would do it for our siblings, too.

In reality, we have no idea what is in store for us.  But, Heaven forbid, if something were to happen to my brother or sister and they needed long term care, I’d do it in a heartbeat.  No questions asked.

Why would it be any different for these two?

IMG_7773 IMG_7775

We had a little Indian Summer in the Chicago area today, so we visited a pumpkin farm that is run by a coworker of mine.  It was lovely.  🙂

IMG_7724IMG_7728

Once you get past Tessa’s sweetness, please note Ellie making a “corn angel” in the background here…IMG_7738 Family Fun in a giant corn storage container…IMG_7736   IMG_7734 photo 3 photo 1 It was the first year that Ellie was brave enough to touch the animals!photo 2IMG_7715Gotta love looking into the direct sunlight for a family photo… especially when the children are being particularly uninterested in a picture.IMG_7718

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 #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 »

Upward movement

In the Hunger Games of pinkeye, I am still winning.

However, much to the delight of my husband, I woke up this morning without a voice. Not just a little hoarseness… this is full-on, my-lips-are-moving-but-no-sound-comes-out laryngitis. So that’s fun.

I spent my day with Tessa as usual, while The Pinkeye Crew hung out at my mom’s house. John is the only one who is still technically contagious, but I’m trying not to take too many chances and am staying away as much as I can!

At the hospital, Tessa was much more herself. She was ready to talk and play and roll onto her belly… The wires weren’t quite ready for that rolling, but she was pretty amused by the tangled mess that she could create. While her personality is slow to emerge, we already feel like she might be very social and a bit dramatic. This morning, if I wasn’t standing where she could see me, she complained until I came back into sight. High maintenance. At least she’s feeling better!!

I am super thankful today for the company of one of my dearest friends, Ashley. She and I got through our first year of teaching together and have remained friends since then. Tessa adores her and so does the rest of my family! Not only did she come to see me and the girls, but once Ellie went home for a nap and Tessa was calm in her bed, Ashley took me out for a margarita. It was a much needed break!! And while it must have been hard for her to hear what I was saying 96% of the time, she’s a great conversationalist and it’s nice to have someone to vent to.

As far as an update on Tessa, she’s making upward progress! When I went back tonight to kiss her goodnight, she was on the regular flow oxygen! That’s the last level to clear before she won’t need it anymore. They took out her NG tube (feeding tube) this morning. Most importantly, her status was downgraded tonight to a regular pediatrics patient instead of a PICU (intensive care) patient. Yay!! The means she lost a couple more wires and is starting to require less monitoring. Great progress for one day!!

20140503-211150.jpg

20140503-211216.jpg

1 Comment »