Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Theresa

Dear Theresa,

As a NICU nurse, I bet you meet a lot of families like us.  Your primary job is to treat the patient, I know, but I bet you help a lot with the whole family’s emotional healing, too.  You did with us, that’s for sure.

The very hardest part of Tessa’s NICU stay, truthfully, was my complete incapacity to do well for both my children.  The feeling of being so desperately torn – to need to be home with the big one, who wanted to get ready for Christmas and go sledding and see the lights and do all of the holiday traditions, while also being emotionally incapable of leaving the new little baby’s side, was absolutely enough to push me to the edge.

We had a lot of support of course, but your presence is one that helped me stayed glued together more than most.  I don’t know that we even talked about Down syndrome during that week.  We must have, but it doesn’t stick out in my brain.  What I do remember is talking about mom stuff.  You shared stories of your kids.  I told you all about my crazy Ellie.  We laughed.  Oh goodness did we laugh!  We actually got in some trouble for laughing too much and disturbing the peace of that quiet little ward.

It was so good to laugh.

As we got to the end of a full week, you helped us to convince the doctors to let us bring her home for Christmas.  You talked to me about how she was ready, because nothing that was happening in the NICU couldn’t be done at home.  And you were right.  You even switched your shifts around to work on Christmas Eve so that you would be there to see us off.  And even though I was so scared to take her home, away from the watchful eye of you and everyone else, I felt like I could because you convinced me that I am enough.

Thank you so much for going above and beyond in your care of our little girl… and of me.  It made a bigger impact that you can ever know.

Most gratefully,

Tessa’s Mom

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This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

 

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Dear Baby #1 and #3

Dear Baby #1 and #3,

I must be in a weepy mood this morning.

Perhaps.

Before Ellie and before Tessa, there were you two.  For a few precious weeks, we got to daydream about life with you, to think about who you might be and how fun it would be to have you to love and care for, to watch you grow.

God kept you before we met you and while we couldn’t understand it at the time, we do now.  If we had been sent you, how vastly different might our life be.

The pain of losing you both is eased only in having the grander plan revealed as life moves forward.  It’s really hard to say that I would rather have this baby than that one, but I understand the purpose in the suffering.  I can begin to recognize how each piece is starting to come together to make a far different picture than we imagined – not just because we have Ellie and Tessa, but because we don’t have you.

Little ones, you are loved.  I expect that you are making some others very happy up in Heaven, and that we’ll get to meet you some day.  Thanks for teaching us some lessons that we very much needed.

Hugs and Kisses,

Mom

:):

This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

 

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We interrupt this regularly scheduled program…

 
😀 😀 😀

That is all. 

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18 months

Ok, that’s enough cranky already.  Yes, The Big Move is daunting.  Yes, spring time has brought mass chaos.  Yes, my patience has been tried beyond its usual limits.  But let’s be realistic.  We’ve made so much progress that really, amidst all the chaos, there is still so much joy.

I don’t even remember the last time I shared a family update.  As this outlet is generally meant to be that – a place for updates – I’ve certainly dropped the ball.  So here you have it:

John and I are making our way, slowly but surely, to the end of another school year.  We both took on leadership roles in our buildings this year and while challenging and new and definitely an adjustment for me, the year has been revitalizing.  And we had a really great time together at a family wedding recently!

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However, we are rather boring.

The children though… oh, the children.  They are, as I tell anyone who asks, wild and crazy.

Seemingly overnight, Ellie went from scribbling haphazardly all over coloring books to this:

Mike Wazowski from Monster’s Inc, drawn from memory

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Our family (there was “no room” for Daddy)

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A tree (clearly, I hope)IMG_8104I hear that those are pretty good for a three-and-a-half year old (though she is now getting much closer to FOUR than I care to admit).  We have some artists in our family (especially my mother in law) so I’m sure that she could have some artistic talent.  I’m not sending these off to the Louvre quite yet, but hey, if the kid can draw, that’d be pretty cool.

Ellie was also in the wedding that I mentioned above.  She was the sweetest cutest little flower girl.  Did she fall asleep in the salon chair?  Yes, she did. Did she cry going down the aisle?  Yes, she did.  But did she look lovely during the whole shebang?  Yes, quite lovely.

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Tessa, while still very much a baby in a lot of ways, has catapulted herself toward toddlerhood.

We recently had some tests done on her eyesight and hearing, both of which have come back without concern.  While her SLP (speech therapist) was concerned that she might not be hearing everything that she should, we know that she has an ear tube that is working its way out of her ear (as they usually do after 12-18 months) and it is partially blocking some of her hearing in one ear.

Tessa loves (LOVES.) to babble.  Usually, her intonation makes it sound like she is speaking in long sentences of gibberish.  There is a lot of emotion in her statements.  We get a good laugh out of the angry Tessa, as we are quite sure that if she had words, they would be quite unkind when she’s upset.  We have been working more on signing with her.  Ellie loves signing and always asks how to say various words in sign.  Tessa has just a couple signs – more, eat, daddy, and play (what more do you really need??).  We are working on bedtime, please, thank you, drink, potty, Mommy, Ellie (we use the sign for E, but shake it like play), shoes, and of course, NO!!!

Very often, I have moments where I think “wow, she is absolutely nothing like an 18-month-old.”  And then sometimes, she does things like this…..

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…. and I’m reminded how she’s not entirely different from her typical peers.  That cabinet had been closed, by the way.

Tessa crawls like a champ.  MAN is she fast!!  One of her favorite things to do is to hold a block or other object in her hand and race across our new laminate floors.  She LOVES the loud bang bang bang of her little hands as she moves.  We are working on getting her to bear weight on her feet.  She fights it most of the time, but today, when John was giving Ellie her bath, Tessa was so desperate to see what was happening in the tub that she pulled herself right up to her feet.  SO exciting!!!  We have her wearing a SPIO suit on a fairly regular basis (supposed to be every day… realistically, it’s like 2-3 days a week) to give her more body awareness and support.

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What I love the most about her right now is the budding personality.  So far, Tessa is a little shy, but sweet as pie.  She just loves to smile and laugh.  While she is usually contended to roam around the house exploring, nothing makes her happier than to have the full attention of one of us or, most especially, her sister.

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Did I mention that she gives kisses now?  Or that she got her first haircut?  Or that she can eat real table food?  And she kind of drinks from a straw??  Have I shared that we finally moved up to 12 month clothes?  Or that turning the pages on books makes her squeal with delight?

We’ve been busy.

In two weeks, school will be out for the summer… ok, three if you count my extended days.  I can promise more updating as we take our deep summer breath.  Get excited.  Summer is going to be here before we know it!

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Mom Kryptonite

I will just put this out there: I find it completely impossible to be an effective parent while wearing skinny jeans.

I don’t know, it might be just me, but hey, God has blessed me with a curvy figure, so those skinny little leg holes don’t have quite enough room to fit my calves (and let’s not even talk about the lack of support for my hips and leftover baby belly).  Sometimes, I get a little brave and throw them on when I’m hanging out with my kids.  It always seems to be on a day when I’m going somewhere in public and inevitably, as soon as I’m dressed, Ellie’s hands suddenly seem to be coated with a thin layer of butter and everything she touches falls to the ground.

Is it really possible to bend over and pick anything up gracefully while wearing skinny jeans??

I share this because when I put on the skinny jeans, it’s like kryptonite for my mom-ness (surely not a word, but yeah.) and while sometimes that’s ok, I feel like being a mom is so ingrained in me right now that losing any of the Mom Super Powers gets me totally off-kilter.

Case in point:  Last weekend, John and I hit the city with some childless friends of ours.  The girls were with my mom and dad over night, we were staying downtown… I decided to rock the skinny jeans.  And high heels.

Please understand that, for my entire life, I’ve been an early-to-bed, early-to-rise kind of girl.  This extends far beyond the years that I have had babies, but at least before the children, 10 pm didn’t seem like the middle of the night.  On this particular evening, we had dinner reservations at 8:00 (gulp.) and then tickets to a comedy show at 10:30 (people actually go out of their homes that late at night??).  “Have fun!” they said. “You need to get out and live it up!”  they said.

In my fresh, hip, and completely impractical outfit, hot dang, I was invincible.  Don’t get me wrong, I had a blast.  We had great conversation, I got to drink a glass of wine uninterrupted (but only one because Good Lord, I can buy two bottles at Meijer for that price) and have adult conversations… It was fabulous.  So fabulous that we decided to keep the evening going until the wee hours of the morning.  Irresponsible, but fabulous.

One week later, I am still tired.

And those jeans?  They have been banished to the back of my closet, hidden under a pile of more reasonable boot-cuts, until my next temporary lapse in sanity.

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On abandonment

We’ve all seen the latest story that is trending on Facebook… you know the one, the story of the father who is (allegedly) choosing to raise his son, diagnosed with Down syndrome at birth, in spite of the mother’s choice to (allegedly) abandon the child.  You can google the story if you haven’t seen it already.  I honestly can’t decide if any of it is credible enough to merit a link.  What I will say is this:

I will not demonize the mother for the choice that she seems to have made, nor will I canonize the father for taking his son to New Zealand in search of better opportunities.

While the choice to leave my child to be adopted in the face of her diagnosis is clearly not the choice that I would make, understand that I am part of a strong and loving marriage, we aren’t rich, but we are comfortable enough, and we have the support of family and friends.  Sometimes, the most loving thing that a birth parent can do for her child is to recognize that she is not in a place to provide what is needed.  And there are many loving families desperate to welcome a child into their homes.

More importantly, I beg you, do not be naive enough to think that these very scenarios do not play out in hospitals across the United States.  Many doctors (thankfully, not mine) deliver diagnoses like these as if they are devastating, miserable, horrific occasions.  It’s not just Down syndrome – any deviation from the neurotypical path is scary, but it does not have to be a death sentence.  And while the gender of the ‘parent who stayed’ is often reversed, there are relationships that fall apart in the face of all kinds of adversity – including the strain of a child with special needs.

We will commend the father for providing for his son, but have we abandoned our own?  Will we invite the little boy with Down syndrome in our son’s class to his birthday party?  And then truly and genuinely allow ourselves to see him as just another 8-year-old boy?  Will we set up a playdate with the neighbor’s daughter who has autism?  Will we accept a child with a severe learning disability into our classrooms and do everything we can to support his desire to learn?  Do we refuse to abandon the children who live in our own community?  Without patronizing, without any air of superiority or feeling of having done a good deed… if you want to make a difference in this world, this is your chance.

Pray for the families that struggle under the strain of a world that has not yet found a way to embrace their child.

Encourage inclusion, acceptance, kindness, and compassion.

Let your actions serve as example to others.

Choose love.

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Life, lately

It’s been difficult for me to sit down and write these days. Not for lack of words, I assure you, but simply for an odd restlessness that had settled into my brain. (Hello, 3 am wake ups, can we be done now?)  We’ve had a lot of serious discussion happening in our home about our future and those talks have mostly drained my ability to look at computer screen and write it out.

I realize as I re-read what I just wrote that I sound terribly melancholy. Rest assured, I am not. As a matter of fact, especially this weekend, I have had a rush of peace with the whole idea of our new family adventure. We’re moving forward.  It’s all good.

Very quickly After, we knew the time would come that we would have to move.  For more reasons than I could possibly go into (not the least of which being the cramped quarters of a home we meant to move out of 3 years ago), it’s time now.  And because of the fabulous fact that we bought our house at the second-worst possible time in recent history, our move is going to involve a stint living at home with Momma and Daddy Dub.

I didn’t expect to spend the summer of my 30th birthday moving back in with my mom and dad.  Then again, I didn’t expect a lot of the twists and turns that I’ve taken in life, so we’re rolling with it.  We don’t necessarily have a timeline for selling our current place, which is nice because there isn’t much of a rush to pack it up.  We’ve started, but it’s not all-consuming.  True to my usual manner of business, I’ve got a few spreadsheets rolling to organize us.  No major task in our family is complete with out some help from Microsoft Excel!!

The kids are thriving lately.  Tessa’s annual meeting went really well.  The therapists have been really impressed with her progress and I was able to push for a specific goal that I think will target her communication skills.  We (very necessarily) have focused a lot on eating in the first year.  Now that she’s sitting, beginning to sign (yay!) and beginning to have more feelings and needs, I’m looking forward to working more on communication during our sessions.  We will continue to have OT, PT, Speech, and Developmental therapy each one time a week.  She’ll start wearing a Spio suit soon, which looks kinda like the clothes you wear for scuba diving if you ask me (though it is sleeveless and shorts, not pants).  You should know that we don’t live in a constant state of therapy in our house – that really, truly, most of Tessa’s “therapy” comes from trying to get the toys back that Ellie steals from her.

Just before we had our meeting, I ran across a quote on the National Down Syndrome Society‘s website that was a lightbulb moment for me. On the surface, I knew this, but the words struck me in such a way that I had a productive shift in mindset.  It reads:

The goal of physical therapy for these children is not to accelerate the rate of their development, as is often presumed, but to facilitate the development of optimal movement patterns. This means that over the long term, you want to help the child develop good posture, proper foot alignment, an efficient walking pattern, and a good physical foundation for exercise throughout life.

Ok, duh.  I know this.  But, for whatever reason, the statement that Tessa is 48% delayed in her locomotion (moving) skills hasn’t phased me simply because of this.  Because suddenly, the delay isn’t about me not putting her hip helpers on her for three days in a row.  She should wear them, yes, but it’s not about me holding her back, but more about teaching her to do it correctly.  Weird how things can strike you like that.

I look forward to telling you about my older child’s awesome development soon… at a time when she isn’t hanging off of my arm crying that I put too much milk in her cup.  Ah life… I wouldn’t have it any other way.

A picture of Ellie at hour 10 of an 11-hour Road Trip, just because.  She was 13 months at the time of this picture (same age as Tessa today).

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Reflections from Oma

There are people in this world who find joy in all circumstances, who rejoice in every day simply because.  This is Judy, my mother-in-law.  You would be hard-pressed to find another person who loves fun more than she does.  She feels everything so very deeply, her love for all of us is bold and strong and faithful.  That love is given freely to any and all who cross her path – it is an inspiration.  

 This is how I got Judy’s entry:

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There is something so beautiful about the written word… we miss that in the blog world sometimes.  Especially with handwriting like hers, it is just lovely.  This is her story, (mostly) transcribed by me.

– – – – – – – – – – – – – –

I can’t remember how I knew Maggie was in labor.  Johnny must have phoned.  I do recall wondering why it was taking so long.  I recall the “mom” in me starting to worry… I recall checking the clock… and I recall saying a prayer.

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think I stayed strong for him and said all the “right” things, but honestly, my heart hurt for Maggie, Ellie, and Johnny!  It hurt bad.  On the drive to the hospital, my mind and emotions flew.  Question after question….  Will she need surgeries?  Will she ride a bike?  Will she be in school?  Boyfriends?  “Regular” friends?  Will people hurt her?

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I had myself knotted up in a wad and told God, “this is not fair!  It’s not right!  How can you do this to this strong and loving family!?”  In my heart, God answered me, saying it was because of this exact reason that he sent Tessa Lynn to them.  OK.

So, we arrived at the hospital just as Johnny and Maggie were headed down to the NICU, where Tessa was.  We had a brief hug fest and went to wait in Maggie’s room.  Mags’ mom was there.  She was calm and “normal” and I was anything but!  She quietly shared information, some she knew and some she researched, with Larry and I.  Then she smiled and said, “this is not Tessa with Down syndrome.  This baby is just Tessa Lay.”  It was a comment that made my complicated simple.  Her gentle perspective was not lost on me. (Thanks, Mimi!)

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When the parents came back, Mags was just like her mom and I chuckle because Johnny was just like me.  We had calm and crazy times two!  John seemed to flit in all directions and was unable to stay still.  I hurt for my kids, but tried hard to focus on my earlier conversation with God back in the car.  They are a very strong and loving couple who can do this, and they will do this well!

At some point, Johnny, his father-in-law Tony, and I  went to the NICU to meet our girl.  As John and I walked, I reminded him to live by the words that are tattooed on his arm: Be strong and courageous, do not be discouraged, for the Lord will be with you wherever you go. (Joshua 1:9)

We entered the NICU room.  Lots of tubes and beeps and equipment.  Under the blue light for jaundice lay our girl!

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In checking her out further, I saw her open hand (I, personally, love childrens’ hands! 🙂 ).  Hers was open, just like baby Jesus in every Nativity that you see.  Not a tight fist… open.  I took that as my invitation and placed my index finger in her palm and I smiled as the little fingers closed snugly around mine.

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I love her, and her mom and dad, and her big sister always and forever, no matter what!  I thank God for His wisdom daily in sending her to us.  She is a fabulous addition to our family.  Perfect.

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11 months

We have somehow arrived at month 11 and I’m feeling more than a little thankful to be past all of the “monthly updates.”

I’ll be honest with you – along with those ridiculous stick-figure families on the back window of 80% of family vehicles, I loathe monthly baby Facebook updates. You know what I’m talking about? Little number tacked onto a onesie, baby sitting next to some board that lists all the stats… Loves peaches!! Great eater!! Hates going to sleep!! Started doing quantum physics!!

Ugh.

(If you do these with your child, please know that I love you both very dearly and this is no reason for you to stop. Please don’t be offended if I don’t read them though. It’s not you, it’s me.)

Really, I don’t think I’ve given you a monthly update in quite some time. I forget, most days, how old Tessa is. The number floats around in the back of my brain and if asked, I can retrieve it. With strangers, sometimes I lie and tell them that she is younger… usually, that’s just easier than having to explain that yes, I know she’s a tiny little peanut and no, she’s not walking yet. But even if the rest of the world is obsessed with how she measures up to her peers, my thoughts about her have so little to do with what she should be doing and so much to do with how far she has come. I don’t really think much about ‘man, you should be standing!’ There are mostly thoughts about how therapy is helping and how much I want to do what is the very best for this girl.

Eleven wild months. Amazing.

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Lesson #29: No passing up snuggles

This is part of the 31 for 21 Blog Challenge!

How did we arrive at Day 29 of this challenge already?! Unbelievable. This has probably been one of our busiest months yet. And here we are at Day 29. You are going to have to forgive my short post tonight. I have no excuse except for this:

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These days, when we’re running like crazy and the girls are stretching their independent streaks, I cannot pass up snuggles.

At 6:15, Ellie snuck up into my lap with FOUR books. How can you resist a little lady peeking up through mile-long eyelashes, begging you to read “just one more, please?”

After Ellie went down, the other munchkin was ready for her chance at some lap time. Once I wrestled her meds into her (eye drops in this squirmy worm… Yeah right. Anyone who says people with Down syndrome don’t get angry should watch this fabulous spectacle), she settled in for a snooze.

I do not make a habit of holding my children while they fall asleep. It’s not how we roll. But, on rare occasion, it is kind of lovely.

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