Yo soy La Lay

adventures in family, faith, and Down syndrome

Ready, set, go… Year 3

31 days of blogging for Down syndrome awareness month…  on my iPhone.

Yikes.

We don’t have a working computer these days, but I’m determined y’all. Starting tomorrow, we’re covering 31 surprises about life with Down syndrome.  Please bear with me on the formatting.. and the typos.. and all of the joys that come from doing this without an actual keyboard.

If you have missed us, my apologies.  I have missed you too!  I have been so itchy to write, and really can’t wait to bust out of my technology-failure-induced-rut.  There’s so much to say!!

Here we go!

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Dear Ellie

Dear Munchie,

This is a picture of you at your Big Sister class, before Tessa was born:


We couldn’t tell that day if you were ticked off that you were getting a sibling, or if you were insulted that we thought you needed to learn anything about taking care of babies.  From the get-go, you told everyone who would listen that it was a girl baby in Mommy’s belly and that a boy simply was not a possibility.  Thank goodness you were right.  You are not so easily convinced of the things that you do not believe to be true.

For example, when we ask you about Down syndrome and what might be different about Tessa, your only answer is that she has more strings than you do.  You seem to not notice the little differences that set her apart – and when other kids point out her braces or her walker, I love how you so matter-of-factly say “well she just has them.”  Like duh, of course she does.  Why wouldn’t she?

The child who asked us about medical marijuana because she heard it on the radio, and who is surrounded by talk of therapists and doctors and IEP goals, has no reason to believe that Tessa is any different than anyone else.

I am so proud of the model you are for others by just playing with Tessa as you do any other child.  Sometimes you get mad at me when we treat her differently.  Like this morning when I told you to stop putting so many puzzle pieces in front of her because it was too overwhelming.  You just looked at me, then continued to stack them in front her. “It’s part of her lesson, Mom.”  Ok, little teacher.  Do your thing.

I don’t think we have to worry about you being your own person; you have already made it perfectly clear that you will be just who you want to be.  There was some very tiny fear in me when we first had Tessa that you might get swallowed up into a life that revolved around her needs.  However, that fear quickly vanished as Down syndrome has faded into the background and your (very large) personality has really taken center stage.  I think that in the ebb and flow of family life, you and she will alternate in the spotlight… and sometimes you’ll share it (in which case, we will be tired).   In any case, I’m so glad that you are you and she is she – you are the most darling little set of sisters… even when you fight.  I won’t ask you to do anything more for her than be yourself, but I have this feeling that your own heart will lead you to being a champion for her… and her for you, too.

I’m so proud of you.

Love,

Mom

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Advocacy #19: Give the siblings a little credit!

It is a little disheartening when people worry (quite intensely) about Ellie’s role in her sister’s life.

My sister does not have any kind of disability.  In reality, someday, she could end up with one.  We all could.  One accident, one illness, one life event that doesn’t go as planned and we may find ourselves needing help.

I would walk my sister to the ends of the earth if she needed it.

In a 2011 study (abstract linked here), 94 percent of siblings age 9 and older expressed feelings of pride about their sibling. 88 percent said they felt they were better people because of their sibling with Down syndrome. Only 4 percent said they would “trade their sibling in” for another.

In our home, Ellie finds plenty of ways to shine, but she also adores her little sister.  I’m not naive enough to think that every day will be fabulous and that there won’t be times when Ellie resents the attention or the treatment that Tessa gets… but believe me, those same feelings will come from Tessa about Ellie as well… as they do in any family situation.

What I am saying is that it is helpful if you just treat them as what they are – siblings.  Not as one being dependent on the other, not as if one may be a burden, but as two sisters who lean on each other for support from time to time.  Often times, advocacy is in the simple act of just letting us be typical.  We are just typical.

These two… typical.

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(Yes, that is a pen drawing on Tessa’s forehead.  Ellie thought she needed a tattoo.)

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The Talk

We had to have The Talk with Ellie.  We weren’t ready for it, but suddenly, in the middle of a quiet car ride home, she blurted out the question we’d all been waiting for…  Sort of.

“Hey guys?  Why do you all think you hafta give Tessa Down syndrome?  She’s FINE!”

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99% of the time, Ellie picks up on every. single. thing. that is said in her presence.  This is not very convenient, believe me.  She has asked about adult conversations from the radio, commercials for random products (you need to buy Oxiclean, Mom!). gossip that I’ve discussed in the company of dear friends… she is always listening.  Because of this, it has been very odd to us that, up until now, she has denied ever even hearing the words “Down syndrome.”  Occasionally, we have asked her if she knows that Tessa has it or what it might mean, but she would always furrow her little brow and give us a look like we were crazy.

I don’t know what set the wheels in motion in her head that night, but the floodgates opened.  We talked about Tessa’s 47 strings and how the rest of us only have 46 (thank you, Becky Carey!).  We talked about how she needed a little extra help from her therapists, but that yes, she is fine.  We assured her that Tessa would always have Down syndrome and that was OK.  It was the most random, meaningful, (un?)important 10 minutes that we have had with Ellie in her not-quite-four years.

And then she followed up by asking us when we were going to stop to get her Happy Meal because she had been waiting long enough.

Love this kid.

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Reflections from Ellie

More than me, more than John, Tessa adores Ellie.  The bond that these two share is unlike any I have ever seen before. This morning, I stayed at home an extra 10 minutes so that I could see my girls wake up before I left for work.  Ellie is quite the grump in the morning, but John has found that by plopping Tessa next to her in the bed, she wakes up totally happy.

Watching Tessa wake Ellie up this morning was the cutest thing I have ever seen.  (And, I apologize, because I have no video of the event.  Some things are better experienced  when you aren’t looking through an iPhone screen.)

We wanted to share Ellie’s thoughts on Tessa and her birth.  So, we asked her to tell us about the day Tessa was born.  This is what she told us:

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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. ❤

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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?

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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.  🙂

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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

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Lesson #10: They’re different.

This is part of the 31 for 21 blog challenge!

(Another post from John tonight. It’s a short one (It’s Friday!!!). Soon, he’s going to need his own log-in name. 😉 )

This is a universal truth for parents of more than one child. Our children are very different. Not because of the extra chromosome, just because they are. Simply put, Ellie will make you laugh hysterically. Tessa will make you glow.

a little flashback to summer fun

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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:

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So where’s my magnet?

Oh Ellie Bean, you sure can keep your momma on her toes.

So, we’re working on thank you notes for all of those who donated to our cause when Team Tessa ran in the Rock n’ Roll half back in in July.  We decided to order some ridiculously cute magnets with Tessa on them to send our supporters.

Ellie takes a keen interest in helping me do most anything around the house, especially things that she really can’t easily help with.  Like writing thank you notes….  There’s no clear way for her to help write letters to our family and friends, but after more whining than I could handle a little consideration, I decided that she could put the magnets into the envelopes.

At first, she was totally enthralled with these little pictures of her baby sister.  But, as her interest in envelope-stuffing quickly waned, she decided to spread all fifty out across the table.  “Look at all these cute little Tessas!!” she squealed, lining them all up in neat little rows.  Until….

Cue dramatic music.

“So, Momma?  Where is my magnet?”

Not upset, not mad, not annoyed.  Just confused.  And my brain just started to race…  What to say, what to say?

We have made a decision that there isn’t a need for a sit-down conversation with Ellie about her sister’s genetic makeup.  She’s a smart cookie, she hears us talking.  We read her 47 Strings, she hears the words “Down syndrome,” and it’s just a part of our life.  She doesn’t know what the difference is, or how it will change all of our lives, but she knows.  So how do you explain this cause that we’re connected to, without diminishing the value of the child without a cause?

“Well Ellie, do you remember when we all wore our Team Tessa shirts and watched Daddy run a race?”

“Oh, yeah.  Well, I choose this one.  This one is mine.”  (picks up a Tessa magnet and hops down from the chair)

And she walked away.

Oooooooookay.   So my freak-out was unwarranted… this time.

I don’t worry about Ellie getting lost in the shuffle of having a sister with extra needs.  Believe me, she makes herself the star of her universe with no problem.  As we continue on our journey of this kind of “parenting on steroids,” there will be lots of tough conversations.  Perhaps Tessa, too, will have “what about me?” questions.

Perhaps?  Who am I kidding?  Of course she will!  I’ve never subscribed to the “equal is fair” philosophy.  I know that each kid will require her own special type of parenting, but explaining any of that to the other is… tricky.  Good thing I’m going to get lots of practice.

And now, cuteness…. (which is, somewhat ironically, pretty Tessa-heavy this time.)

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This is her “if you think I’m done eating my food, you’ve got another thing coming” face:

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