Yo soy La Lay

adventures in family, faith, and Down syndrome

DSAM17 – Day 5 – the pictures are alllllright.

I wondered what we would look like pictures.  

(Remember when I told you that these things seem so strange with time and perspective?  I wasn’t kidding.)

Would she fit in regular clothes?  Would she smile? Would people always stare at us?  Would we always look at her and see nothing but Down syndrome?

She does rock the same clothes that Ellie wore, albeit at a much slower pace.  She smiles all the time… but only if she wants to.  Do people stare?  Kind of, yes.  But when we look at her, it’s just Tessa.  And our family pictures?  They are pretty cute. ❤️

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DSAM17 – Day 4 – We work

This is strange surprise.  But then, most of the “surprises” seem that way now, given time and perspective.

Because Tessa was born pretty healthy, all things considered, we were blessed with time to bond with her immediately following her birth while they prepared a bed for her in the NICU.  We talked a lot in those first moments, trying to process the seemingly drastic life shift that had just happened.  We wondered, would one of us have to quit a job that we love and stay home with this child?  Who would be willing to care for her?  Would she need more help than we can provide?

Spoiler alert: we still work.

There are certainly challenges that come with being a working parent when your child has a disability.  Juggling appointments and therapy sessions can be overwhelming at times, and you have to learn to trust that those caring for your child are giving her the very best.  We didn’t sit in every therapy session, nor did I always get to attend every doctor appointment, but in a way, working has given me a chance to recharge my mom battery.  My kids get the best of me when I’m in the working world during the day.  I know this isn’t the case with every mother, but frazzled as I am 96% of the time, it works for us.  The ability to work is a surprise that I am quite thankful for. ❤️

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DSAM17 – Day 3 – Walking

In the womb, Tessa was my most active baby.  I remember feeling her squirm around very early in my pregnancy, and after that, she was never still.  Every moment was filled with kicks and rolls – at her 20-week ultrasound, our tech said it was the most active little one that she had ever tried to measure.  All day and all night, never a rest.

In the NICU, they called her “the swimmer.”  She never stayed flat on her UV light mat to treat her jaundice, kicking and flailing in her little isolette.  The hospital PT was quite impressed. 

She rolled at three weeks.

She had an amazing four-point crawl.  Still does, actually.

But walking?  No.

I didn’t know it would be so hard.  She started out so strong and I just didn’t know.

On this day last year, Tessa was not standing or walking independently.  She inched closer and closer to her third birthday and showed no sign of these elusive milestones.  And it was hard, y’all.  She was heavy and I was newly pregnant and exhausted, emotional, frustrated.

But then she walked… no, ran!  There was no walking, and then all the sudden, she took off.  As is most growth with Tessa, she pushed me to the farthest edge of my ability to not totally freak out, then broke through.  

Such is life with this child.  And I love her for it.  

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DSAM17 – Day 2 – On being a sister

When Ellie cries (which is pretty often), Tessa seeks her out, rubs her back, and tells her it is going to be ok.  She’s not particularly good at helping clean up the playroom, but she lets Ellie boss her around, sitting through book after book and lesson after lesson in their pretend school.

(We never worry about reinforcing school at home because Ellie is ON IT.)

Tessa and Ellie argue, but Tessa is quick to apologize.  She is the only person who can wake Ellie in the morning without being scolded.  She is gentle and patient when we are not.

With Lauren, she is loving and protective.  She comes to find me if Lauren needs something.  “Mom, Warren spit up.”  “Mom, Warren hungry.”  “Mom, I hold Warren please?”  She adores her.

I wasn’t sure how Tessa would interact with her siblings.  At her birth, I became quite fixated on the relationship that she would have with Ellie.  The moments in which I am the most overwhelmed are always when I feel like I am failing both girls by not being able to meet either of their emotional needs.  From day one of her life, I worried that Tessa would consume me in a way that left little for her sister – and that her sister, in return, would be jealous at best.

What I have found instead is that when my heart is pulled more to one child or the other, so too is theirs.  Ellie knows when Tessa needs more, and she gives more in those moments.  Tessa does the same.  Is there jealousy or sadness, irritation, frustration?  Of course. But overwhelmingly, they care for each other.  Down syndrome is there, in the background, but their relationship has nothing to do with that one extra chromosome that makes Tessa different and everything to do with the other 46 that they have more in common.

So surprise, healthy sibling relationships are not out of the question.  Like all relationships, they have to be nurtured and cared for, but have no doubt that there’s a whole lot of sister-ing going on in this house. 

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DSAM17 – Day 1 – The diagnosis

This is probably the most silly thing to be surprised by, but with as many people as there are in the world, I can’t be the only one who felt this way.

The first surprise that Down syndrome has given us is that Ds can be a birth diagnosis.

For many of you, I feel like this is a “well, duh” moment.  For me… well… the idea of such an occurrence never crossed my mind.  I had always assumed that if something were “off” with the baby, our prenatal ultrasound at 20 weeks would have shown it.  This is a small part of the reason that those first several hours after her birth were so rattling for me – I couldn’t understand how no one had any idea of this prior to birth.

I have learned a lot since then.

This past year when we were preparing for Lauren’s arrival, we once again chose to forgo the prenatal testing, this time with a more solid understanding that at birth, something could be atypical.  I still maintain that if we were to go back, we still wouldn’t have done any testing prior to Tessa’s birth.  I am certainly pro-information for those who want to prepare for the unexpected, but for our family, uncertainty is a type of stress that we would be very challenged by.

Looking back on that silly, smushy face on the ultrasound machine, I am even more amused at the surprises she had in store for us.  Being a girl, coming early, being a blonde, having Down syndrome… take your pick.  That birth day was anything but ordinary.


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Ready, set, go… Year 3

31 days of blogging for Down syndrome awareness month…  on my iPhone.

Yikes.

We don’t have a working computer these days, but I’m determined y’all. Starting tomorrow, we’re covering 31 surprises about life with Down syndrome.  Please bear with me on the formatting.. and the typos.. and all of the joys that come from doing this without an actual keyboard.

If you have missed us, my apologies.  I have missed you too!  I have been so itchy to write, and really can’t wait to bust out of my technology-failure-induced-rut.  There’s so much to say!!

Here we go!

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Winding up for the Wind-Down

Be still my heart.  As I stood in the kitchen making dinner, Tessa wandered in, no doubt looking for a snack.

“Momma?  Where Daddy, Lauren, and Ellie?”

It was clear as day, even the word “and.”  The question word “where,” the list of names… It makes everything worth it – every moment at home, being here as a family, adjusting to each other again, hammering through – worth it.

To be honest, there was a small amount of trepidation in the fact that we declined Extended School Year services.  My gut knew she didn’t need it, but with the exception of deciding to marry my husband, there hasn’t ever been a decision in my life that I haven’t over-evaluated.  So with this sweet little question, I feel vindicated.

This summer, we expected some chaos.  Add a new human to the house and there will be madness.  We did not expect the sleep study, or the ER visits for my gallstones, then subsequent hospital stay for the removal of my dead gallbladder, nor the Do-It-ASAP-Tonsil-Removal that so neatly wrapped up our summer of medical madness.

It could be so much worse.  It was enough, and we are tired, and Lord, it could be worse.

The tonsil surgery went well, all things considered.  There were some rough moments coming out of the anesthesia, and we are still struggling to get Tessa to accept her oral meds as easily as she once did.  Still, my own annoyance at watching Frozen and Moana on repeat 18 hours a day since last Thursday afternoon is really the only struggle that has come from the healing process thus far.  I have heard that days 7-10 can be awful, when the scabs fall off, but our ENT told us that she has “small stalks” on which her tonsils were growing, so the recovery shouldn’t be as bad as it could be.

So after all of this, we’re ready for some rest and quiet.  I’m heading to my DSDN Rockin’ Mom Retreat this coming Friday and it could not be coming at a better time.  Last year, I hopped on a plane and flew to Dallas for an amazing weekend connecting with other moms.  This year, the fun is coming to me in Chicago.  I spent a little time this afternoon reading through my blog post from last year about the trip and thinking about how fabulous I felt coming home from a weekend of connecting with these women.  I am so very ready for that feeling again, and feel pretty lucky to have the opportunity to go.  I’m terrified to be home on my own with all three children on my own, so I’m thankful that John is willing to be the first to try it – and I’m sure that after this weekend, I’ll owe him some time away as well. 🙂

I feel like there is so much to do between now and Friday when I leave school and head up to the retreat – packing and organizing, wrapping up loose ends at home so that things can be seamless here, planning in advance at work so that the Monday after the retreat is smooth-sailing… it’s a wind-up in order to wind down, but it is so worth it.  And since we’ve been on full-throttle for some time now, I’m not sure it will feel much different than how life just is for us in this season.  But the relaxation, the conversation, the unrushed breakfast and wine with friends… it’s coming.

Rockin’ Moms Retreat, let’s go!  ❤

 

 

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From one mom to another, thanks

To the mom I saw in Aldi,

Well, that was a little awkward, wasn’t it?

Truth be told, my family is a chaotic mess when we shop together.  We do it often, hoping it will get better as we practice.  So far, we haven’t much improved, but we keep charging through it anyway.  You had it together much more that we did, pushing your two little girls through the aisles.  We are a tornado… so it’s no wonder that your daughter noticed mine.  They may not look it, but they are probably the same age.

“Momma, look at that girl’s face!” she exclaimed.  You were very sweet in your response.  “Oh, isn’t she pretty?  She’s so cute.”  Your daughter persisted, and you stayed positive.  “She has such a pretty smile!”

I couldn’t look up at you at the moment.  I just grabbed my lunch meat and Kraft singles and hightailed it out of there, shouting to my husband to choose a Pinot Grigio and not a Chardonnay.

If you’re anything like me, you’re probably still thinking about today just a little bit, wondering if you handled our interaction well.  You might be thinking about your little girl, like I am mine, and hoping that you helped her see the beauty in what is different.

I wanted to thank you, to tell you that I appreciated that you didn’t scold your daughter for her statement.  She’s so young, and curious.  If I had been less frantic, and more brave, I would have smiled back and told her that Tessa looks a little different because she has Down syndrome.  And I would have told her that even though she looks different, she loves Moana and pink and Goldfish crackers, just like I bet she does.

I want you to know that it is OK for you to use the words “Down syndrome” to explain one of the things that makes our girl unique.  We don’t whisper those words in our house; Down syndrome doesn’t hurt our feelings.  And while it does not define who Tessa is, it certainly does help our little ones understand why she is a little bit different.

I’m sure we will cross paths again.  Our community is not large and Aldi is a pretty tiny little store.  When we do, I will be brave and thank you in person.  I hope you know how happy it made me to hear someone speak so sweetly about my daughter.  Not everyone sees what we see, and I thank you for that.  You’re doing a great job.

All the best,

Maggie



 

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My Beach Body

My Beach Body has stretched to grow three humans.  It has a hefty amount of stretch marks and a tummy that looks kind of like a deflated balloon.  It’s smushy and cozy and not on my list of “immediate concerns.”

At not-quite six weeks post-partum, my Beach Body is ready for the bathing suit I just bought to accommodate a pooch.  It is ready to splash in the pool with my girls and to enjoy a wine spritzer while lounging in an Adirondack chair and reading Rachael Ray magazine.

Next summer, my Beach Body will likely still need that same suit and that is OK.

You see, my Beach Body, which looks nothing like the Beach Body of my early 20s, is healthy and fulfilled.  It enjoys a lean protein and vegetables for lunch and dinner, but also the chocolate that follows once the kids are in bed.  My Beach Body now is not longing to fit the size 4 wedding dress stashed in my daughters’ dress up bin.  It isn’t even reminiscing about all the size 6 pants that I donated when Tessa was born.  It thinks a little about the 8s and 10s that are in the back of the closet, but is comfortable in maternity shorts and size 12 for now.

Twice a week, sometimes more, my Beach Body takes a walk around the neighborhood, all by itself, and truthfully, rocks out to those boy bands from the early 2000s that I still can’t quite get enough of.  It doesn’t go quickly, or break into a jog, but it moves.  It shows my girls that they can take a moment to breathe, to be in solitude, and to step away from the world’s chaos for 30 minutes.

My Beach Body wants my precious girls to know that they can go to a birthday party and enjoy a piece of cake.  It walks those girls to the ice cream stand down the street and does not feel guilty about a chocolate-dipped cone with sprinkles.  It doesn’t need wraps (thanks no thanks, random Facebook acquaintance that I haven’t spoken to in 10 years) or shakes.  It doesn’t believe in cheat days, but in moderation.  It feels balanced.  Chubby and healthy and balanced.

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Eight <3

Eight years gone by in a flash.

Cookies and walks on Monday evenings.

Breakfast before 7:30 class.

Sushi dinners.

Ironing tiny ribbons for Save the Dates.

Clearing the absurd back log on our DVR.

Driving through the mountains in your mom’s Mustang, top down.

Wandering through Barnes and Noble.

Bon fire nights.

Opening our Christmas gifts two days early.

Surprise road trips to the QCA.

Rockin’ our babies.

Morning text messages with emojis and the Judge Judy eye roll.

Cleaning our kitchen.

Pizza after the kids go to bed.

Swim lessons, bottles, diapers, and baths.

Laughing all the way through it.

And this:


I love you, Johnny.  Happy anniversary. ❤️



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