Yo soy La Lay

adventures in family, faith, and Down syndrome

DSAM17 – Day 15 – The Look

A surprise explain in just a picture.  She is my mini-me. ❤️

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DSAM17 – Day 14 – We get away

I absolutely love to travel.  John is more of a homebody, which, for the sake of balance, is probably good.  I could live out of a suitcase for months at a time… he is more of the weekend away type.

In any case, I thought having a child with Down syndrome would mean that my vagabond tendencies would have to be reigned in.  At the very least, I wondered if we would ever be able to get away without the kids again.  

Spoiler alert: We do.

Truth be told, we are totally blessed with an amazing support system that makes this possible (more on that to come).  Right now, as I relax in a hotel room after a full day of bumming around with my husband, I don’t recall why I thought this might not happen again.  Maybe it was a fear that no one would be able to “handle” her, or would be willing to try, but that couldn’t be farther from the truth.  

And, we also take the kids places.  Pretty much from the get-go, we have been carting Tessa all around God’s green earth to show her the wonderful things around us.  She does pretty well with it (the Dollywood fireworks every night were a little much, but we managed) and while we have yet to make it outside of the Midwest, we have some big travel plans for our future that I can’t wait to get moving on!!

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DSAM17 – Day 13 – The Meeting

Technically, we met in our first education class, however John and I really solidified our friendship in our Methods of Inclusion class.

How serendipitous. ❤️

We debated often the merits of including children with disabilities in the general education classroom.  I won’t tell you who was on which side… but it’s kind of unbelievable that all those years ago, before we even loved each other, we learned to bicker over something that is now so very near and dear to both of us… something that we both support with an unrelenting passion.

I am so thankful to have had that class.  And I am so thankful to have this husband.

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DSAM17 – Day 12 – The Worst Thing

This I know:

There are so many things in life that are the worst, and Down syndrome isn’t one of them.

There is so much more pain, heartbreak, devastation.  This doesn’t belong in any of those categories.

When she was born, Down syndrome was a worst case scenario – and if I have learned anything in the past few years, it is this:  people in the world deal with shit that is absolutely awful.  On the list of “awful things,” Down syndrome wouldn’t even get a mention.

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DSAM17 – Day 11 – Attention

I just returned from the second night in a row at the doctor with Lauren.

(I will say this – every time I refer to going to the doctor (like above), every time I call and make an appointment, or give the scheduled child’s name or birthday, I give Tessa’s information first.  I have grown so accustomed to her being the patient that her info just pops out of my mouth.  When I wrote that first sentence, I typed Tessa and had to go back and correct myself.)

All this considered, it is not uncommon for my other two hooligans to need my attention… and when they need it, they get it.

This was a huge concern of mine upon Tessa’s birth.  Would Down syndrome envelop every facet of our life?  Would 24 hours pass where her needs weren’t first and foremost on our minds?  Would Ellie resent us for this?

It’s not our reality.  Truly, truly, after some time has passed in life, I can say that I am able to devote time to all of my little ladies. Ellie is very vocal about when she feels like she needs more attention.  Lauren is pretty basic so far.  But both get time with Mom, as does Tessa.  I sometimes get a little sad that most of Tessa’s Mom Time is centered around doctor appointments or some kind of life-learning experience, but I am working on that.  Ellie gets sweet fondue and shopping dates, so it’s probably with Tessa that I most need to step up my game.  This is not what I had envisioned… but once again… it is good.

Mom and Ellie Cookie Baking Bonanza

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DSAM17 – Day 10 – Black Day

Marcus Sikora is an awesome guy who wrote a book called Black Day: Monster Rock Band.  My kids LOVE this book and I think you should buy it.  It’s so perfect for Halloween.  We watch the DVD version of the book pretty much every day during October and Tessa sleeps with the book (which is hard cover so ouch).

Marcus and his mom, Mardra, came to our Chicago-area conference last October and told a little bit about the story behind Black Day, as well as Marcus’ love for acting.  Marcus did a Q&A session with the crowd and signed autographs.  My girls think it is pretty awesome that we have a signed copy with “omg his REAL handwriting!!”

This month for Down syndrome Awareness Month, we decided to donate a copy of Black Day to both of the girls’ schools.  I think it’s pretty awesome that Tessa will be able to visit her school library and find a book written by someone with Down syndrome.  It’s not something we foresaw on the day she was born, but it has been an excellent plot twist nonetheless. 

To buy Marcus’ book, click here:  https://mardrasikora.com/black-day/ You will love it!

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DSAM17 – Day 9 – Sometimes fun is hard

We knew that fun would sometimes be more challenging, but the surprise for me is when, and my own internal conflict about it.

Sometimes Tessa struggles with loud places, or places with a lot of stimuli around her.  This is especially true for things that happen around bedtime or when she should be napping.  For example, this weekend, we attended a birthday party at a local restaurant during the early afternoon (nap time).  It was in a back room, but the music was loud, and the people even louder as they enjoyed their time together.  We took one step in the door and Tessa immediately shut down.

The odd thing about this is that we could have walked in the same environment 2 hours earlier, and she would have been fine.  But even stranger, we were in the exact same scenario one week earlier at Lauren’s baptism party (same time of day, perhaps even more noise) and she didn’t struggle at all really.  Some laughing freaks her out, some just makes her laugh.  Some loud noises cause a meltdown, others pass with no reaction.

What we are left with is a conundrum.  We have two choices: avoid the potentially upsetting environments altogether, or keep going and make her learn to deal with it.

This is where parenting Tessa gets a little messy for my soul.  When she struggles, it pains me.  My eyes well up with tears, and I feel panicked.  Clearly it hurts her also, because otherwise she wouldn’t be so upset.  But I also know that we cannot avoid all of the triggers.  I cannot always keep her safe from those situations.  She will eat in the cafeteria someday, or want to go to a party with friends, or go to a bar with live music!  But when we are struggling with one of these situations, and I am forcing her to deal with it, I feel mean.

It’s not fun.

There is no nice, neat way to tie this up, no pretty ending or poignant final thought.  It is a struggle.  Not a debilitating one, but one that weighs heavy on my heart.  I did not, and do not, feel this way with Ellie (and trust me, there is Mom Guilt about that, also).  I suppose I’ll just keep on trying new solutions until we find something that fits. 

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DSAM17 – Day 8 – We (still) have fun.

Immediately upon her birth, there was some question as to whether we would still be able to have fun.  And while there are definitely some things that are different or more challenging with Tessa, I feel like we still have a pretty darn good time livin’ life.  Case in point…. the pumpkin farm:


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DSAM17 – Day 7 – The Blondie

I suppose the bigger surprise here was actually that Ellie was born with such dark features.  Today, as she was drawing in the car, she asked us how she looked as a baby.  “Kind of like an eskimo,” we told her.

If you didn’t know me as a child, you would never know that I was quite blond as a baby.  As I have gotten older, my hair has darkened considerably… and with each pregnancy, even more so.  John, too, while not particularly blond, doesn’t have the dark head of hair that Ellie came into the world with. But, now that Ellie’s has lightened up, we all kind of have the same hue.

(Our last family-of-three picture.  Tessa was born 4 days later.)

This is why, for most people, Tessa’s super-light hair color catches them off-guard. 

No, it’s not like that because she has Down syndrome.

Yes, some people have thought that.

When she was very little, I had her at the eye doctor because of a clogged tear duct that would not clear.  As she examined her eyes, she told me that the back part of her eye (?) is quite pale, and that given her super-fair skin and light blond hair, she would not be surprised if Tessa has ocular albinism.  I just laughed because her hair color is actually much like mine used to be! Over time, the back part of her eye has “normalized” and we know now that her hair is blond because, well, that’s just how she is!  Super fair, super blond, and super cute!

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DSAM17 – Day 6 – We have fun.

I missed my day by like, 4 minutes because we have fun. #sorrynotsorry

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