Yo soy La Lay

adventures in family, faith, and Down syndrome

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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Let’s Clean House!

So today I am wondering if my house will ever (EVER.) not look like this:

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To the left, you will see our “therapy bins.” Think that sounds fun and interesting? It’s actually all the junk that accumulates in our downstairs living space week-after-week. We call them “therapy bins” because every time Tessa has a therapist coming over, we throw everything into a bin and shove it into our master bedroom.

We have seven very full bins.

Did you happen to notice my half-painted toenails? The ones that I have been planning to paint before every one of the three road trips we have taken since Father’s Day? Someday…

On the bed, there are stacks of clothes that will surely find themselves piled on the floor at bedtime tonight. And then, we won’t know what is clean or dirty anymore, so they’ll probably get thrown back into the wash just because.

On the plus side, I did manage to mop the bathroom floor for the first time in…. for the first time.

The strangest part of all of this is that we are not busy people right now.

A couple of weeks ago, my husband asked me if I wanted to spend two kid-free days cleaning our house in celebration of our five-year wedding anniversary. While I’m sure that the most practical answer to that question would have been “YES! What a fabulous idea,” my response was something along the lines of “only if you want this to be your last anniversary. Ha Ha Ha.” I just don’t want to give up quality time to clean! While I really do enjoy a sparkling home (I think… It’s been a long time so I’m not actually sure), I enjoy living with my family more.

When I took Tessa to have one of her first blood draws, there was an elderly lady in the waiting room who was totally drawn to her. She told me “Don’t go home and do your dishes. My kids are in their sixties now. I can’t hold them anymore. I don’t remember the days that I scrubbed my floor or vacuumed. I remember the times that we played games or went for walks. Do those things.”

And so I am.

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Sickie

I need to write an update on Tessa, but truth be told, I haven’t spent a lot of time with her in the past couple of days.  Instead, I’ve taken care of this little sickie:

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Ellie doesn’t get sick often.  As a matter of fact, this is the first time she’s been sick at all since she was about 9 months old!!!  However, when she does come down with something, she goes all out.  She’s just like her daddy in this way.  The throwing up, the chills, the crying… her fevers are always in the mid-to-upper 103 degree range and she just acts miserable (and I’m sure she really is!).  New to this illness was Ellie’s ability to use words to tell us all about her pain and discomfort.  She had lots to say!!  So. Much. Whining.  My particular favorite was an exchange that we had toward the end of her sickness, when she was absolutely desperate to show some love to Tessa:

Ellie:  Can I please kiss Tessa now?!

Me: Nope, sorry.  We have to wait until you are alllllll better.

Ellie:  Ohhhhh.  Because I throwed up?

Me:  Yep.

Ellie:  And because I have worms?

I can assure you, there were no worms, but rather, germs.  Thankfully, it only took a couple of days for Ellie to return to normal.  The “tummy bake” and “worms” have left, John and Tessa are allowed out of quarantine, and only one of four family members was afflicted with this lovely bug.

(It’s worth noting that Ellie learned VERY quickly that she will be pampered when sick.  After bursting through the door yesterday afternoon, laughing and singing, she was asked to pick up some toys.  She proceeded to tell us that she really “needed a rest,” then laid down on the couch, closed her eyes, and asked for some sprite for her tummy bake.  Yeah, right.)

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