Yo soy La Lay

adventures in family, faith, and Down syndrome

Peace, not perfection

I never tire of the holidays.

I have no max input of twinkly lights.

Buying presents does not exhaust me.  I could wrap for days and days.

I love the endless onslaught of Christmas cookies.

I have no fear of the rush to move from house to house, visiting with family and friends, enjoying coziness and cheer and gingerbread house making and ALL OF THE HOLIDAY THINGS.

(I have probably grown tired of the Trolls Holiday Special but that is beside the point.  Those creatures are annoying.)

I am sure that much of my love of this season stems from the fact that I have two love languages: gifts and quality time.  The American Christmas Season was made for people like me.  I mean seriously – all we do from Thanksgiving through New Years Day is what I love – buy things and love on each other through endless holiday gatherings.

Sometimes where I falter is in reminding myself that the American Christmas Season was not made for all of the people I love.

Eek.

For example, about a week ago, my parents took me and the rest of the ladies in the family to an afternoon performance of The Nutcracker.  I imagined a magical afternoon with my girls, their faces lit up with unbridled excitement at the costumes and the music and the dancing.  As the performance drew nearer though, I began to have some trepidation of how Tessa would respond to the theater environment.  In general she has struggled in concerts, performances, and other events where there is clapping and lots of sensory input.  In the name of including her, we forged ahead with the day, and I was hell-bent on making this a great experience.

Until it wasn’t.

Before the curtain even went up, it was apparent that she was going to sob her way through the performance (I suspect in fear of the moment that applause would break out).  It didn’t matter if I covered her ears or found some other way to block out the noise, she was not going to have it and my magical day with the girls suddenly felt heavy and sad.

I’ll be totally honest – when I ran out of the auditorium and into the bathroom with her, I cried in anger for about 15 seconds because this beautiful experience was so hard for her.  It felt really unfair.

And then, as I sat with her in the lobby and waited for John to take her home so that I could watch the show with Ellie, I thought through all of the hard things that people deal with in the holidays.  I gave myself an internal stern talking-to and reminded myself to calm the **** down.  Because seriously, this is a molehill compared to the hurt that people struggle through during what should be a sweet and festive time.

My struggle with perfection has come to head this season as I have seen my eldest start to navigate the very real irritation that I also feel when things do not go as planned.  She is as I am.  And to help her function in our world, I have to consciously choose peace in the imperfect, not in perfection.

It is not easy.  I have wanted desperately to rearrange ornaments, or people’s choices in meal times, or my child’s psychological brain function…. it’s not realistic.

Peace is not perfection.

Peace is not perfection.

There is still so much to be learned. ❤

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Control Freak

If our children always did what their parents wanted, we certainly would not have Chicken Baby in our home.  If you haven’t met Chicken Baby, here he (it?) is:

I am uncertain who thought it would be a great, marketable idea to put a Cabbage Patch doll into a chicken costume, but there he is.  And he’s aaalllllll ours!!  (And by ours, I mean Tessa’s.)
Who would choose this creepy little creature as a comfort object??

We acquired Chicken Baby on one of our nine bagillion trips to Target in the last three weeks (because new house, of course).  If children always did what their parents wanted, Tessa would have behaved herself on that trip, and we never would have ended up in the toy aisle, searching desperately for a soothing object that cost five dollars or less.  An entire rack of cute stuffed animals were lined up in front of us and we got Chicken Baby.  

I didn’t go into parenthood with many preconceived ideas of who my children would be.  I assumed that we would get some extroverts,  because we are.  I assumed they would excel in school.  I knew, before parenthood, that I could keep my girls from having a princess complex.  No pink frills, no referring to the girls as princesses. 

Last week at preschool graduation, Ellie was the only girl in the class who said that she wants to be “a princess” when she grows up.  

So there’s that.

One of the most difficult parts of parenting for me is letting go of my desire to control the choices that my children make.  They are young – we are not grappling with major life decisions here, but sometimes John lets Ellie pick out her own outfit and it makes me twitch just a little.


Or when she refuses to dress her Barbies and I continually have to encounter Awkward Barbie Moments… 

(This is tame.)

It takes every fiber of my being to Let. Go. on a regular basis.  It’s Type A parenting, desperately hoping to be just a little Type B, for the good of their development as independent women.

I think having Tessa has pushed me, just a little, to embrace the path that my child will follow, whatever that may be.

(OK, not whatever.  Bank robbery and juvenile delinquency are off the table.  As are jobs at establishments where women wear spandex shorts and push up bras.)

In any case, my own personal preference for matching clothes and markers with their caps on correct color probably seem like small potatoes, but I’m trying to use these situations as practice for the Big Ones, like choices about college and living arrangements and buying ridiculously overpriced clothing because it’s on fleek or whatever the new phrase for “cool” is at the time.

I feel as though they are going to give me lots of practice this summer.  And I need it.

Because seriously, the markers.


(Somewhere across town, my mom is laughing quietly to herself, smiling and saying ‘hehehe, now she knows what I went through raising her…’  I have an insane amount of respect for that woman.)

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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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