Yo soy La Lay

adventures in family, faith, and Down syndrome

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.



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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. ūüėČ )

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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The State of Our Union: July, 2014

Midway through 2014…


Seriously, when did that happen?  Our lazy days of summer have been very, very good to us.  With the Fourth of July holiday now over, I can already feel the itch to get back to school.  Crazy as I know it is, I do miss the routine of our school year.

But not enough to rush back in already. ¬†ūüôā

Here’s an update on how we’re all doing… skip to the end if you’re only interested in our most-interesting family members (meaning: the kids. ¬†I’m not offended if you don’t care much about John and I. ¬†ūüôā )

John and I

We’re coming up on our five-year wedding anniversary (this Friday!). ¬†As we have spent every one of our anniversaries in the car and this year will be no different, on kind of a whim, we went out to celebrate last week. ¬†Hiking in a forest preserve, beers at a local brewery, Buffalo Wild Wings for dinner (because it’s within walking distance from our house), and then walking home in the pouring rain… it wasn’t exactly a romantic celebration of our love, but I think it fit our couple personality well enough. ¬†Maybe not the hiking… no part of me is a hiker. ¬†But we did it.



Why buy a card when you can just show one to your husband in CVS for free??? ¬†ūüôāIMG_5746

John is loving every minute that he gets to play with his girls. ¬†Grad school is in a lull right now before his final push to the end and Lord knows that no one is ready for that to be over more than we are. ¬†He’s also training for the Chicago Rock n’ Roll Half Marathon (donate here), which means a lot of late-night and early-morning runs. ¬†I’m so proud of him! ¬†And, our team is in first place for the amount of money raised. ¬†I can’t wait for the race!! ¬†Team Tessa will be out in full force!


I’m settling into a new position at work this summer, which has been a (good) whirlwind. ¬†I have also made some good connections with mommas in the Down syndrome community and I, like John, have really enjoyed time with the kids. ¬†My travel bug bites are sufficiently calmed for a little bit from all of our mini-excursions, though my recently-renewed passport is just dying to be used…. someday….


Can I tell you again how much I despise potty training?

The child is a nutcase and I adore her. ¬†She’s smart as a whip and fiercely in love with all things Frozen. ¬†We have seriously watched the movie at least 5 times a week for the last month. ¬†Now if we could just get her to take a break from her imaginary universes¬†and start listening to her bladder, we could move all move forward. ¬†Ellie loves her sister to pieces and we haven’t had a single issue with jealousy or regressing to baby behaviors. ¬†What a blessing! ūüôā


There is no filter on this picture. ¬†Those eyes are going to break hearts someday….IMG_5778


We had Tessa’s six-month IFSP review yesterday (her IFSP is the document that outlines her goals for development). ¬†She is almost seven months old! ¬†Her occupational therapy evaluation was yesterday as well. ¬†On the positive side, she rolls like a champion and is actually “advanced” for her age at that skill!! ¬†However, she is struggling to use her hands to do more than swat at toys or put things in her mouth. ¬†When she was evaluated today, we learned that developmentally, her fine motor skills with her hands are around the two-month range. ¬†So, going forward, we’re going to add in occupational therapy once a week. ¬†We have to work on her core strength. ¬†It’s difficult for her to do much of anything until that tummy strength improves. ¬†It will help her move, play, eat, breathe, interact… it’s a huge focus for us right now! ¬†As our developmental therapist (DT) explained to us, she’s going to keep developing cognitively and if her body won’t do what her mind really wants to, we have to worry more about her behaviors (which, by the way, happens in classrooms all across the world all. the. time.). ¬†In true Tessa form, as soon as she heard her DT say this, she started to improve. ¬†I swear to you that as soon as this child hears that¬†she isn’t doing what she should be and we’re going to add more therapy, she hurries up and “gets” the new skill…

This month, we also started solids with Tessa. ¬†She seems to be indifferent to it really. ¬†Can I also mention how much easier it is to do things like start solids when you just have one child? ¬†I don’t know why, but we have been really inconsistent in feeding Tessa at the table. ¬†Weird. ¬†Anyway… right now, she doesn’t eat a whole lot by spoon and she’s slow as molasses, but she doesn’t spit it out! ¬†While we can’t always tell if she is interested in more or not, she will let us know when she is done. ¬†With great joy, she spits it all in our faces by buzzing her lips. ¬†The joys of parenting… ¬†I have started using a few signs with her (“more,” “all done,” and “eat”) and I’m sure that once John reads this update, he will, too. ūüėČ

Tessa’s emerging personality is¬†sweet and easygoing but has a flair for the dramatic,¬†she¬†loves¬†people and being held, adores her sister and daddy (and most other people)… ¬†She sleeps well, is now eating well and provides great balance for us and her goofy sister. ¬†She is such a great addition to our family!




As our summer dwindles (but not too quickly!), I can’t help but feel so blessed for all that we have right now. ¬†Our family, friends, and coworkers have been overwhelmingly positive, supportive, loving, helpful… I could go on and on. ¬†For now, I just want to say thanks. ¬†If you are reading this, you have been a part of this… of us and we can’t thank you enough.

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Before Tessa was born, I was often asked how Ellie felt about having a baby. She’s two, so the reality of what a sibling would do to the family dynamic is not something that she had any way of comprehending, but she made one thought very clear: we were to bring home a baby girl, or the baby would not be welcome in our family.

Thank God that we got the right gender!!

Ellie adores our baby…. probably too much at times. To her, Tessa is just the cutest little bean and requires about 47,000 kisses per hour. She talks to her in a ridiculous voice, holds her little hands… May we all remember to treat her as “normally” as Ellie does!!!

I do think often about their future together. It’s probably the one area that actually causes me a substantial amount of anxiety. I never want to parent Ellie less, expect more of her, or put too much on her shoulders. However, I can’t help but pray that this little toddler will grow into a champion for her sister. I’m not naive enough to think that Tessa will never have to deal with teasing or feeling left out… nor do I really expect that Ellie will always be the one to come to her rescue when times are tough. However, when I picked Ellie up from her daycare on Friday, I couldn’t help but smile at the exchange I heard between my eldest and another little girl:

Girl: Hi Autumn!! (The name of another little baby)
Ellie, very upset: No! That is Tessa! Do NOT call her Autumn, that is not her NAME!!! She is Tessa!

You go girl.


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