Yo soy La Lay

adventures in family, faith, and Down syndrome

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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Meet Lauren – A birthday story

As a young person, I didn’t have any visions of my wedding, or babies, or life with little rugrats in pigtails running around at my feet.

What I envisioned, truth be told, was a meathead husband (check) and a gaggle of teenage boys, a house full of sports gear, and always being mother-of-the-groom.

And then life actually happened.

In case you missed it, we welcomed our third little lady earlier this month.  Like my whole pregnancy, I’m still trying to wrap my head around the fact that there are three Tiny Humans under my care.  And the fact that they are all females?  I am so confused.

If you like birth stories, here’s how Lauren made her arrival.  If you aren’t interested in learning about my cervix, thanks for reading and we’ll see you next time. 😬

At 35 weeks, I began having regular contractions (3-4 times an hour, pretty much all the time).  There was some concern because Baby was still breech, and it was a little early, so my OB insisted that I take it easy, at least until 37 weeks.  At 36 weeks, after the awesome week of contractions, I was not dilating at all.

At 37 weeks, Baby was finally head down, and my (false) contractions continued at regular intervals.  The head was in place, I was a centimeter dilated, and I thought surely Baby was going to come out soon.  Tessa had arrived this early, we were ready, why not?

Because babies come when they want, that’s why.

A small amount of desperation set in after 37 weeks and 3 days passed by (the point at which Tessa was born). Keeping up with my kiddos felt pretty much impossible.  Every step I took felt like the baby’s head was going to fall out.  At 38 and 39 weeks, though these amazing false labor contractions continued, there was no change in my cervix.  When I hit 39 weeks, my doctor offered to do an induction, but I declined.

Babies come when they want, right?

Friends, I cleaned every freaking inch of my house between 38-40 weeks.  All my cabinets sparkled, drawers were organized and rearranged.  I ate all the spicy foods, I administered some acupressure.  I tried all the things, y’all.  Baby was not ready to come out.  The contractions continued.  My children were confused as to when the baby would be here.  We were all tired.  Welcome to the end of pregnancy, right?  Anyone who has had a baby has been there.

Then our 40 week appointment arrived.  I had a non-stress test (NST) which didn’t end up looking as good as we would like (baby’s heart rate had a few dips that shouldn’t be there).  My OB did a check of my cervix and said “hmm, well, I guess it’s still kind of one centimeter.  It doesn’t seem really like a one to me” (which struck me as a really odd statement).  However, because the NST didn’t look great, she sent us over to the hospital to have a longer test and possibly to be induced if things still didn’t look right.

Because babies come when they want…. unless they get evicted.

After a significant amount of time on the NST machine, and a thrilling conversation about the diminishing function of my placenta and again the “weird” dilation of my cervix, we decided that it was time for this little peanut to have a birthday.

The plan was to place Cervadil in order to get my cervix to prep for labor on its own.  After 12 hours with the Cervadil in place, at 2:30 in the morning, we would start some Pitocin and then eventually, have a baby.

I was beginning to wonder why I didn’t stop to have a sandwich on my way to the hospital.  Thankfully though, there was a marathon of Island Hunters on HGTV to pass the time.

My cervix responded well to the Cervadil.  Around 9:00, my contractions started on their own.  I think around one AM, my most favorite human being in the hospital showed up – the anesthesiologist.  I got my epidural, and after a long freaking day, I attempted to get some rest while we worked our way to 10 centimeters.

And then at 4 centimeters, my progress stalled.

So remember that “weird” cervix I was telling you about?  And the feeling that the Baby’s head was going to fall out for so long?  Well, the little stinker decided that she really wasn’t going to cooperate with coming out and moved her head out of place.  For a little while, we thought maybe she had turned around again and was breech.  They carted in an ultrasound machine to check and she was still head down, but without the head engaged where it should be.

Commence Birthing Ball Olympics.

And did I mentioned that my epidural was wearing off on one side?

God bless my awesome nurses, who moved me over and over again for hours, attempting to coax our stubborn little child into place.  The Pitocin was flowing.  My Island Hunters marathon had transitioned to Fixer Upper.  At 9:45 AM, there was still no change from 4 centimeters.  My OB (whom I love) told us that “it’s still just kind of a mess down there.”

Babies come when they want.

Then at 10 am, her head slipped into place.  And at 10:15, my water broke.  And by broke, I mean it burst like a water balloon.  Like you see in the movies.  Like if we had been wandering through Home Depot, they would have needed a very large mop.

At 11:00, I was at 10 centimeters.  At 11:15, I felt like it was time to turn off Chip and Joanna and deliver the baby.  And at 11:30, after about 3 pushes, little miss Lauren entered the world.

For the first time, I got to hold my baby as soon as she came out.  After all the unpleasantness of birth was cleaned up, we let Ellie come in to meet the baby for the first time.  She was so thrilled to have another sister – and even more than I ever could have expected, we were (and are) over the moon elated to have another little girl.

This life is not at all what I imagined.  Of course, I still have my meathead, and there’s still a chance that sports gear will take over my house (though watching my big girls try to be athletic makes that chance seem very, very slim), but holy cow, we need to start saving for three weddings.

Welcome to the world, Lauren Ann.  We are so thankful that you are here.

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Happy Sixth Birthday, Ellie!

I don’t really know what to make of having a six-year-old.  Every birthday does this to me.  I can’t wrap my brain around first grade, especially as I cradle her new baby sister, who looks just like her and wears all those itty bitty sweet little outfits that we had picked out for Ellie on our way home from the hospital after her birth.

When did my chubby little munchkin, whose nose and cheeks just begged for thousands of kisses, grow into this tall (TALL.), beautiful young girl??  Her personality has grown right along with her, and where once there was a goofy little toddler, now an inquisitive, serious, and dare-I-say dramatic school girl who loves to write and draw and ask her parents uncomfortable questions.

Why yes, Ellie, I would be glad to explain to you why boys don’t have vaginas.  In like, 5 years.


Ellie thrives on one-on-one attention and playing with friends who will pretend along with her.  She pulls Tessa, generally willingly and occasionally not, through endless rounds of “school” and “doctor’s office.”  She (like her mother) has a difficult time not calling the shots, not being first in line, not following her schedule.


As a matter of fact, at the beginning of the summer, I put together a plan for our days, with the intention of just getting the girls in the routine of cleaning something (Please. Anything.) on a daily basis.  On the fridge, The Schedule, according to Ellie, must be followed to a T.  No deviations.  Don’t you dare skip the school work.  

We do our best.


My sweet, sweet girl, with her big and bold feelings, is in a hurry to grow up and holding desperately to being a little one all at the same time.  I catch little glimmers of her teenage years from time to time – in her pretend phone conversations or playtime with her dolls.  It’s far too soon to tell what she’ll grow up to do, but we are in for a fun ride getting her there!


Around the age of two, when Ellie started asking us to chew gum, I told her she had to wait until she was six.  It was just some random age, for no real reason; it just seemed far enough in the future that it would never be here.  We stuck to it, and save for the few pieces slipped to her by Oma, she has not had much opportunity for gum chewing and it’s really the one thing that she is most looking forward to for her birthday.  Today at Target, I bought her a bunch of flavors so she can find the one she loves best, and she’s already learned that there is no chomping or she has to spit it out.  She’s ready.  I’m so not.

Happy gum chewing day, Girlfriend!!!  We love you so very much!!!! 

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Jump!

So many things…. let’s start here today:

For as strong a gross motor allergy as Tessa has, her desire to be able to jump has always been high – so high that I’d rank it right up there with “eating all the donuts” and “figuring out how to open the front door.”  We signed her up for Karate with Ellie through our park district.  At the end of class, when they would practice by jumping from one mat to the next, a small part of me was so sad to see her crouch down, expecting to jump like her peers, only to need the support of her aide and teacher to be lifted up across the divide.

Unlike me, it never got her down.  She developed her own methods, popping up from her crouch and raising up on her toes as high as she could, or dropping to her knees and pretending to be a frog.  She laughed gleefully each time she attempted to get airborne.

I hadn’t thought about jumping for a little while.  School is out for the summer and we declined Extended School Year services for Tessa.  In a nutshell, this means a summer without therapy.  She gets activity in through Karate and swim lessons – and life with her big sister is pretty much a 24/7 speech therapy session. Mostly though, we’re taking it easy.

And then this:

Did you see those sweet little toesies get airborne?!?

We work so hard for progress in every area, and she is making it.  Sometimes though, it just takes a little step back on our own part and letting her figure it out.  And when she does, well, it’s got us all jumping for joy. ❤️

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Sisters

So Ellie’s newest pet name for Tessa is “you little Down syndrome girl.”

She says it in this high-pitched, baby talk voice and probably under different circumstances, I would think that it’s pretty cute.  I mean, not the nickname itself, but the fact that she has one for her, of course.

Cringe.

At just about six, Ellie is a voracious reader.  We often joke that we know that she’s going to be that kid in class who makes her teachers crazy because she flies through her assignments so that she can read, her book hidden on her lap under the desk.  She will try to read anything that she finds lying around the house – news articles, pregnancy books, a silly “how-to” guide for all kinds of household tasks… “Mom, you should really think about blue for your bedroom,” she’ll tell me.  Or, “Mom, we’re supposed to have a motion detector light.  What’s a motion detector light?  Do we have that?” 

I tell you this because in the back of pretty much every book about Down syndrome for siblings, there is a “topics for parents” section that she is now blasting through and suddenly, she has a lot of questions.  She understands more now that Tessa isn’t just like her peers.  As she interacts with others in school, as more cousins are born, as she meets more people in her big, beautiful world, Down Syndrome has become something that she wants to wrap her brain around.

There was first a phase where she found it fun to guess who in her life has Down syndrome and who doesn’t.  This was purely based on looks and what she had read about almond eyes, low-set ears, etc.  Now, as she is seeing other children in school who have speech delays or other cognitive challenges, her questions are more about why Susy “can’t talk right” because in her mind, only children with Down syndrome have this challenge, and Susy doesn’t have it.  To her, Down syndrome is something that is positive because it gets you things that other kids don’t get, like an aide for Karate class, or one-on-one time with therapist… or help from Mom and Dad and maybe less time-outs.

And then, because she points out all these inequities, as parents, we are left wondering if we are “leveling the playing field” for Tessa, or if we are letting her get away with it because maybe she doesn’t understand.  I always have to go back to asking myself, if she didn’t have Down syndrome, would we do this?  

Kids have such an interesting way of making us question so many pieces of life.

Yesterday, as I listened to them waking up over our newly-reinstalled baby monitor, Ellie was teaching Tessa about the difference between “cold like I need a blanket” and “cold like you are sick.”  She was trying to get Tessa to understand that she wasn’t feeling well, and patiently gave examples of a double meaning that would surely give any three-year-old trouble.  What made me smile is that they were just chattering, not playing, but just being sisters and talking as sisters do.  I am hopeful that maybe, just maybe, we are helping Ellie understand that Tessa is just Tessa, and that Ellie doesn’t have to be anything for her except a sister, to teach her about putting on make-up and navigating the school bus and to help her understand which foods in the cafeteria to avoid.  We continue to walk the delicate balance of teaching her to be kind, helpful, and compassionate, but not making her feel like she is tied to any particular job in her sister’s life.  We want her to feel comfortable talking about Down syndrome and how she feels about it, while still recognizing that Tessa is who she is regardless of the extra chromosome.

It’s hard, y’all!

When Ellie calls Tessa her “little Down syndrome girl,” I have taken to reminding her that there are lots of things about Tessa that we can use to describe her that are just as sweet, like her shiny hair or sparkling eyes.  We keep letting her ask her questions and explore this topic that has so much and yet, so little impact on our life.  And maybe, hopefully, she’ll grow up knowing that Tessa’s path is different, not less.  Hopefully. ❤ 

An oldie but goodie, this is my all-time favorite picture of the two of them…

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Reflections on Motherhood, Year 6

For almost six years, I have been a mother. 

Last weekend, we sat on the couch while the girls played.  “Tessa, can you count for us?” John asked.

Slowly, Tessa counted from one to fourteen, skipping four through six, as she always does.  We cheered and clapped exuberantly.

With desperation in her voice, Ellie chimed in.  “But I can count to a hundred in Spanish!”

It was quite clear that she was looking for the attention that her sister had gotten.  We burst out laughing.  She burst into tears.

Parenting is hard.

This is really the only conclusion that I have been able to draw after these short years.  It’s tough, knowing how to help the little humans become reasonable, productive big humans.  It is worth all of the challenges, but Lordy, yes, it’s tough.

I don’t think that before the children came, I thought much about what being a mom would be like.  There were moments thinking about going to high school sports events, or chaperoning a field trip to the zoo, but neither John or I had a style or approach to parenting in mind – we’re more fly-by-the-seat-of-your-pants-oh-crap-we-have-no-milk-where-did-I-put-that-dang-pacifier kind of parents.  I’m glad that we have a routine and structure.  I think we’d benefit from about one more hour of play each day.  I walk a very fine line between being a reasonable/involved parent and a mom who is overly concerned with all the things she cannot supervise.  My kids watch too much Daniel Tiger (but we’re working on that).

By far, the most difficult aspect of being a mom for me is that both my girls need “mom-ing” that looks completely different and I have yet to find a way to be two different people at the same time (and they don’t seem particularly interested in being who I thought they would be either, thank goodness).

Silly kids.

One needs security and one-on-one time.  The other needs freedom to explore.  Neither is particularly responsive to my preferred method of discipline, the Time Out.  While both like to sing and dance, there is no interest in sharing the spotlight.  One loves to curl up in my lap and read books.  The other runs laps around the living room.  One is mostly compliant, and while she will whine about whatever work she has to do, do it she will.  The other – well… she does not.  One is scared, one has no fear, one needs gentle coaching and melts down in response to sharp words or anger.  Both like bribery. 🙂

What will number 3 bring to this chaos??

I’m certain that I’ll never have the answers or figure this whole “mom” thing out, but I’ll keep plugging away at it, like so many other moms do.  And sometimes I’ll make my kids cry, and sometimes l’ll help them laugh, but mostly I just want them to feel loved.

What more can I really do?


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Stability

Little known fact about me:  no matter how early the departure time, I will always, always take a shower before bringing Tessa to any doctor visit.

I’m not sure when this started, but I’ve determined that it acts like a security blanket for my nerves, like I’ve somehow decided that washing my hair and putting on make-up will somehow block us from anything bad happening.  Because if I’m cleaned up and ready for the long haul, everything will go smoothly.  You know how if you bring your umbrella on a cloudy day, it won’t rain?  Kind of like that.  If I’m prepared for the day, nothing can go wrong.

We had one of those appointments last Wednesday and since I now have all the information… here you go:

So there are several screening tests that we are to have with Tessa throughout her life.  Thyroid, sleep study, monitoring white blood cell counts for leukemia, eyes checked, heart scanned, etc.  The most recent test that we were to have done is the atlantoaxial instability neck X-ray.

Very very basically, the top two vertebrae on which the skull/brain sit are more likely to be unstable in individuals with Down syndrome.   Rarely, this can cause nerve damage or more serious complications.  Many times, certain therapies will require a child to be cleared of this instability (like to participate in equine therapy), as well as some extra-curricular activities (especially those that could involve head compression/injury like gymnastics).  Our pediatrician wanted to have her screened at three.  This was recommended by the American Academy of Pediatrics for some time, though I have been told that their most recent guidelines don’t require it.

In any case, we had the neck X-ray and at about 7 pm, I got a call from the pediatrician’s office and was greeted frantically with “are you still in the hospital?  We really need to talk to you about your daughter’s results.”

Not exactly the words that we were anticipating.

Their instructions were essentially to put Tessa, our wild and independent little runner, into a bubble until we could see a neurosurgeon.  What?? No PT, no physical education, no recess (what??)… do nothing until she is cleared by a neurosurgeon.  They told us that there was a high risk of paralyzation if she were to have a head injury (as they say this, I remember the moment with startling clarity when she fell down the stairs just three days prior).  The next day, the office made us an appointment to see a highly-recommended neurosurgeon within a couple of days.

To say that we were freaked out is probably the understatement of the year.  

It was a long wait until that Monday, but I will say, within a minute of meeting this doctor, we were totally at ease… because he’s clearly brilliant, but also because he greeted us by asking “so tell me, why did they send you here?”

His concern was much more minor, quite thankfully.  He didn’t see the severe instability that the initial radiologist must have.  We weren’t totally in the clear – because Tessa can’t well communicate with us symptoms that she might be experiencing (numbness in her fingers, neck pain, etc), we still needed to have an MRI to make sure there is no damage to her nerves.

The problem with an MRI and a three year old is obvious.  An adult can barely lie still for that long, let alone a child.   We would have to go into Chicago to our Children’s Hospital so that she could have the imaging done under anesthesia. Unfortunately, in my family, there is some history of complications with anesthesia, so we get a little more antsy than people probably typically do.

We finally had her MRI done last Wednesday.  A 5:15 departure time is not far off from my typical work day, but being on Spring Break… that alarm felt extra early.  The hospital staff was lovely, really, and while navigating the city (especially on Lower Wacker Drive where GPS is useless) is not my favorite, we managed.

The history with anesthesia always brings lots of questions from the staff.  Most people see one or two anesthesiologists before a procedure; we always meet the whole team.  Tessa was a trooper, and charmed the heck out of all the doctors and nurses with her manners.  She did take quite a bit longer than typical to come out of her daze, which made our time in the waiting room, waiting for answers, feel like an eternity.  When she finally came around, she alternated between her dazed, lovey schmoozing and intense irritation with anyone who took her juice and goldfish crackers.  It was hilarious.

I’ll cut to the chase here – on Friday afternoon, we got the call that her MRI was essentially “unremarkable” and that there are no concerns at this time.   We will continue to see this neurosurgeon off and on over the next several years to continue monitoring, as AAI may not appear until later in life.

For now, I feel like my superstitious shower helped us out once again.

#neverleavethehousewithoutmascara

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Not settling

I have been told recently that life isn’t fair.


This news doesn’t come as much of a surprise to me.  Once I moved beyond the age of oh, 14 or so, I never expected it to be.

The context of this statement, though, is what rattled me.  As I’m sure you can guess, the circumstances revolved around this little girl:


(when was the last time your face showed that much joy?)

You see, the political climate being what it is these days, I found myself in a debate of sorts with a dear family member about school choice and the impact that it has on children with disabilities.

Throughout our conversation, I was told about the great “special needs schools” that my daughter could attend.  Schools that “specialize” in her “special needs.”  Schools that are “specially equipped” to “handle” the “special care” of our “special girl.”


Dude.  Stop.

I tried to get someone to explain to me why it is that Girlfriend needs all this “special stuff,” most especially when research indicates time and time again that what is actually best for her is to be educated in a typical classroom alongside her typical peers.

(I mean, if you ask me, while she may be hard to understand, she’s kind of a standard three-year-old.)


The only answer that I got, really, was that life isn’t fair.  Basically, we just got dealt a shitty hand, so good luck.  Good thing there are those “special schools.”

I bowed out of the conversation there.

Here’s the thing.  

Down syndrome isn’t the reason that life is unfair for Tessa. It’s not shitty.  People are.  Down syndrome is not some awful life experience to overcome, but the belief that it is awful, is a problem. 


The problem is that no, life isn’t fair, but that doesn’t excuse us from the responsibility to make it better, not just for ourselves, but for anyone.

Our fight to keep Tessa in a regular classroom is very much about her, but it’s also about any other child who walks through the door of that school building – or any building.

(It’s also about the law, though that pesky little thing seems to be lost on a lot of people these days.)


It’s about changing perceptions about what people need.

Not pity. Acceptance.

Not charity. Kindness.

Not escorting off into some “special place” for their “special needs.”  Inclusion.


It hits you right in the gut when the fight is so close to home.  It is bad enough when perfect strangers are the culprit, but let’s be honest, it’s a thousand times more discouraging when people who know and love our sweet girl still don’t get it.  

We’re not settling for special.

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