Yo soy La Lay

adventures in family, faith, and Down syndrome

Down syndrome doesn’t suck.

I don’t prefer to give most people who berate and belittle people with Down syndrome any consideration.  But I just need you to understand something very important today.

Down syndrome doesn’t suck.

I’ve watched a lot of really, really crappy things happen to great people recently.  Pain beyond my ability to comprehend surges through the hearts of new parents kissing their babies goodbye too soon.  Families devastated by poverty, war, hate.  There are absolutely horrific events happening all over my community… all over the world.

And apparently, the birth of my baby girl is one of them. 

Recently, Richard Dawkins, a famous geneticist and author (among other things… a**hole being one of them) told a mother expecting a baby with Down syndrome that it would be immoral to continue with her pregnancy, given that she knew about the condition.  He said that people should try to “reduce suffering” when they can and that bringing a child like Tessa into the world isn’t right because she will suffer and won’t contribute to society.

But, Mr. Dawkins, what you have failed to realize, is that  in her eight months of life, she has already contributed to society.  Probably in a better way than you ever could. 

Tessa’s smiles light up the faces of family and friends who have long been searching for something to smile about.  Some of her loved ones glow in a way they never have before when they see her.  The very feat of her existence, beating obstacle after obstacle, has inspired people to do more, try harder, go farther.  She has changed the way teachers do their jobs, influencing the education and experiences of an incomprehensible number of children.  She has helped people forge relationships that haven’t been strong before.  She has been in the world for 247 days and she has made an impact.

Tell me that our world doesn’t need more positivity?  More love?

I know a lot of people with 46 chromosomes who suffer or who don’t contribute to society.  In fact, they sometimes make our world worse.  You made it worse.  You perpetuated an outdated, unjust stereotype.  You devalued the worth of my child.  You scared a mom who doesn’t need to be scared.

People who receive a prenatal diagnosis of Down syndrome deserve accurate information about their child’s future.  If you can’t give accurate information, please don’t give any.  Next time, send them to the Down Syndrome Diagnosis Network.

Rant over.  Special Needs Mom Law #3:  Let it go. 

Done.

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She is so loved. 

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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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In which we begin again

Another school year begins tomorrow. That blissful stretch of open road that lay before me back in May has now reached a dead end. Or maybe one of those intersections where you have to turn left or right into a hectic routine. You can’t continue on the open road of summer forever… not in this house.

In two separate and totally unrelated incidences, my mom and father-and-law turned to me as I was playing with Tessa and said the exact same thing: “You’re really going to miss her this year, aren’t you?” This statement has given me pause because it isn’t something that anyone has said to me before in regards to either of my children. Not when I returned after maternity leave, not at the end of any other summer break… not ever. I adore all of my family members, even my husband ;), so I’m trying to put my finger on what exactly it is about this child that makes the separation more intense.

Basically, it’s because I’m a control freak. I mean, there is that sweet smile that sends us all over the moon (especially me), but let’s be honest here. In seven and a half months, I have missed exactly one doctor appointment and 1.5 therapy sessions out of a zillion. This school year, Tessa will have both OT and Speech at daycare without me. I may have to miss a doctor appointment here and there. And I’m not done training John on how to best keep track of information for me! It’s a forced transition into letting go just a little bit. That’s good for me and my child.

To be frank, my brain needs a break from Google. I spend every spare moment networking, researching, reading about Down syndrome. It makes me a little bit insane. It’s unneccesary. It doesn’t do any of us any good. I am determined to provide Tessa with a quality life with many choices. I don’t want to “cure” her or to change her, but instead hope to create an environment in which she can thrive. I can do that best by giving my brain a break and the best way I can do that is to begin the school year again. So off we go!

And now, cuteness:

Tessa helped us get the room clean in the best way she knows how…

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I just love this picture that my sister took…

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Ellie and Tessa, hanging out as sisters do…

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And finally, Tessa’s first toenail polish…

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The Haircut

And now, a milestone of a different kind.

This is kind of silly, really.  There is absolutely no rational reason for me to be so connected to the hair on my eldest daughter’s head.  And yet…

Take my child to the ER via ambulance and I’m cool as a cucumber.  Chop 9 inches off of Ellie’s lovely locks and I’m a blubbering mess.  

I need to get it together. Seriously.

Thankfully, my awesome mother-in-law, Judy, (or as the girls call her, “Oma”) is a rockin’ hairstylist, so I didn’t have to lose it in public.  Check this out:

The Before:

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“Are you sure, Mom?”IMG_6065

Tessa doesn’t really get what the big deal is.IMG_6073 IMG_6075This is about where I started crying.

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Mickey Mouse on TV helps the time go faster…IMG_6078 IMG_6079

All done!!IMG_6082 

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