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



 

Advertisements
1 Comment »

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.

Image may contain: 3 people, people smiling

 

Leave a comment »

Size Matters


(Ellie and Tessa in the same 4th of July outfit.  Ellie is one. Tessa is two and a half.)

Two and a half.

25 pounds soaking wet.

A little tiny package bursting with laughter and joy and sunshine.

Our park district has an amazing indoor play area where we like to bring the kids to get their energy out.  It’s huge, with oodles of slides and soft-cushioned obstacles to climb through and around. They have an area that is just for little ones and it is there that we like to let Tessa roam free and explore.  Mostly because it is caged and keeps her out of trouble. ūüôā 

There are, of course, other children in the play area and I am so often amused when I see her surrounded by infants.  The sheer size of her peers is so markedly different.  And inevitably, another mom will come over to make conversation, hoping to commiserate on the exhaustion of having an infant in the house.

I wait for the question.  I know it’s coming because it always does.

“She’s so cute,” they say, “how old is she?”

“She’s two and a half.”

Inside, I cringe and wait for the response.  They vary, but usually it involves an effort to restrain eyes bugging out of their head and an oddly confused smile.  “Oooh,” they say, their eyes darting back and forth between my child and theirs, sizing up the differences.  Mostly, the conversation kind of dies.

One time, a mom literally asked me if I was sure.  She shared that her daughter is that same age and asked when her birthday is.  She thought I had miscalculated my own child’s age.

That was awkward.

A small part of me just wants to lie when I get asked.  Would it be any easier to just tell them she is 15 months or 18 or whatever number I feel like throwing out?  Maybe I’ll really wow them and say that she is 10 months.  That could be fun!

I think, as parents, we might all be happier if we could just stop asking each other how old our children are.  It does nothing good – just feeds into this urge to compare.  And what good are comparisons anyway?  One is potty trained, one isn’t. One is reading, one isn’t.  One is sitting or walking or talking or whatever.  Some are not.  They are not less.  Different, perhaps, but not less.

But more than that, I’m sad for the conversations that die out.  Our experiences are probably a little different in parenting, there’s no denying that.  But we can still share.  We are parents in the same community.  Our children will grow up near each other.   Commiseration gets us through some days!!  And even if my little one is on the scenic route, she’s headed in the same direction as all the other little ones – up, up, up.  I’m just a mom.  She is just a kid.  So let’s talk!


3 Comments »

A No Laughing Matter

Have you missed us??

We are back – and tonight, bringing an important public service announcement.

Let’s start with this: I laugh loudly, and a lot.  It’s genetic, really.

It’s unfortunate that with her extra chromosomal material, Tessa didn’t pick up that loud laugh… It would be built-in therapy.

We’ve brought this up before, how Tessa bursts into tears at the sound of adult laughter.  It’s been on my mind recently because we have a family trip to Kentucky coming up and like I said, the laughing loud thing?  It’s genetic.

It’s kind of a troubling issue you see, because we are all laughers and boy, does a crying child dampen the mood.

Now that I have tripled my commute time each day, I have lots of time to think.  Nothing particularly earth shattering has come out of this deep thought, believe me.  Mostly I just wrestle with whether I should stop to quench my undying sweet tooth after a long day at work (hellooooo Oreo Coolata).  But I digress.  I’ve actually been thinking some about the laughing.  I’m not Tessa’s therapist, but I know my girl, and I want to share some ways that you, dear family and friends, can help us help Tessa.

1. Tessa is learning to live in a world where there are adults who laugh and screaming toddlers and the whole gamut of unsettling noises.  Do not censor yourself.  We need her to learn to deal with her emotions.  She will, in time.  The last thing anyone wants is to see all the fun go down the toilet!

Remember this?  

2.  It really helps if, after you laugh, you avoid eye contact. You may think I’m crazy, but how many time have you seen a kid fall down and not actually cry until an adult gives that ‘look’?

3.  Never, ever (EVER) feel bad about her crying when you laugh. It’s not you, it’s her. And that’s ok. It’s ok for her to have this issue and it’s ok for you to laugh. And to be honest, when you feel bad, we feel bad and uncomfortable and it just makes everything feel a lot worse than it needs to. So even if you do feel bad, just pretend that you don’t.

4. Did I mention the “no eye contact” thing?  It seems to help with #3.

5. Know that as her parents, John and I have got this.  Sometimes people like to help by making suggestions, or trying to problem solve, or commiserating, but it can be exhausting.  Between her therapists and our support groups, we’ve got the tools that we need to help her process.  We need time, and we need people to know that if she needs a break, trust us, we’re on it. 

So, to recap, your job is to laugh.  Please, please, laugh.  We’ve got this.

Maybe these will bring some chuckles?

  

  
  
  

1 Comment »

Miss Cranky Pants

Three times I’ve written this and three times, it has been deleted.

Ladies and gentlemen, I am 100% stuck in a rut. ¬†Miss Cranky Pants? ¬†Oh yeah, that’s me.

My hope is that just throwing this out there will somehow help me to snap out of it. I have been told many times that my feelings about developmental delays will ebb and flow… It’s so true. I don’t know if this crabby phase is an “ebb” or a “flow”, but it’s where I am right now.

This all began (kind of) with the planning of Tessa’s first birthday party, which is in a month. I’m thinking a lot about the milestones that are commonly associated with the first year – walking, using a cup, eating table food, first words – and thinking about how hard she is working and how far away these milestones seem to be. She will do them all in her own time. Today, I just wish that one thing would be easy for her. Just one.

I think a lot of this was magnified by the Thanksgiving holiday and time to catch up with family and friends. I found myself talking a lot about what we are working on in therapy and how she is doing. I have an idea in my brain that people have expectations for what an almost-one-year-old should be like. And somehow, I have convinced myself that if people see her and she isn’t that way, the way they are expecting, then they will feel bad for us. Pity is the absolute last thing I want.

She’s so little! Someday, she’ll have her own personality and talents. They are already locked in her little brain somewhere. Because of Down syndrome, the puzzle is a little trickier to figure out, but her strengths will emerge. Rather than frustration, what I really want to feel is cheers for how hard she has worked and how far she has come. She’s army-crawling. She’s holding her own bottle. She’s mostly sitting. She’s babbling like crazy. It’s progress.

In all of this, I would change nothing. Just as I would not change any of the aspects of myself that I struggle with, neither would I in her. All of this serves a purpose. All of the ebbs and flows and smiles and tears and everything else that comes along with an extra chromosome is part of her role in this crazy world. She and all of us are better for it.

There. I’ve said it. I’m in a funk. But I’m feeling better already.

A little cuteness, perhaps? Just one picture today. It’s Tessa, in a restaurant high chair for the first time, while out on a special date with Mommy and Daddy all by herself. Just try not to smile when you see this face…

IMG_6781.JPG

7 Comments »

On letting go

I shared the following exchange on my Facebook page recently. I was speaking with one of my students. All of the kids are fairly “at risk” (struggling to maintain good grades) and this particular girl has been feeling very overwhelmed and unable to catch up. ¬†She spent awhile telling me that she felt like she just can’t learn. ¬†And then she told me this…

IMG_6722.PNG

People really don’t know Down syndrome.

47 chromosomes. Low muscle tone. Ability to exceed expectations. People-first language. Sensitivity to people with different needs. Highly insulting nature of the “r” word. Some people know. Many, maybe even most, do not.

I cannot hold someone accountable for what he has never been taught.

I wrote on Friday about how it drains me to hear the “r” word. In the moment, it’s really crummy. But it’s Sunday now, and I don’t even remember who the kids were that said it. One of my dearest blog friends (who shares her amazing story here) asked me if I had any tips on how to¬†deal with it. My approach comes down to three things:

1. Teach: Remember that people don’t “get it” and we have to teach them. The intention of a person who uses the wrong terminology (like “Down’s baby) is not usually mean-spirited. ¬†Sometimes it is. ¬†Still, we can very simply explain and correct. ¬†When it comes to the “r” words, I usually say something like “hey, so that word kind of bothers me. ¬†Could you use something different?”

2. Don’t preach: Remember that it’s highly personal for us, but not for them. ¬†Ranting and raving doesn’t help. I realize that it should be common sense to avoid the “r” word, but it isn’t. Venting at length does nothing more than make people feel uncomfortable with me. I cannot win all the battles and I win less when I fight with anger.

3. Move on: Let it goooo, let it go! (Are you singing in your head now??) Sometimes, I have to come home and vent to John, but then I stop dwelling on it. For me, the best way to move forward is by treating it as minor in the first place. My student who thought she had Down syndrome? That situation could be handled in three ways… I could ignore it (and probably get mad when it happens again), I could be angry about it (and make her feel upset and I’d probably end up a crotchety old woman), OR, I can see it as a chance to open someone’s view of the world.

The bottom line is this: just as I wouldn’t expect the average Joe on the street to understand the complexities of my child’s needs, neither can I expect that he would understand the feelings that I carry about this beautiful child. When it comes to interacting with the world, I choose empathy. I choose compassion. I choose love. And while I cannot expect the rest of the world to make that choice, I can choose to lead by example.

IMG_6723.PNG

2 Comments »

(untitled vent.)

I do a lot of language correcting when hanging out with teenagers all day. ¬†Normally, I don’t hear the word “retarded” on a regular basis. In fact, I could really count the number of times, Before and After, that I had to correct it on one hand. In a high school setting, that was promising. It seemed like maybe, the word was disappearing.

Until today.

3 different kids in four hours. Each kid got a lesson. One poor child even got pulled into my office and shown 47 pictures of Tessa all over my walls.

Every single time, it drains all of my energy.

I wonder if that ever stops?

What the heck, man??

IMG_6695.JPG

6 Comments »

Lesson #31: There is beauty in this change

This is the last post of the 31 for 21 Blog Challenge!

This is my most important lesson.

Upon returning from my summer Study Abroad program in Ecuador during college, I did something completely uncharacteristic of me: I got a tattoo.

Evidence.  And, a new ab binder.

photo (18)

If you were to line up my brother, sister, and I, I’m fairly confident that no one would peg me as “the tattooed one.” ¬†I still wonder, on occasion, if the tattoo¬†that my brother got was simply an effort to not be outdone by his nerdy sister. He would never admit it, of course, but still…

(On an unrelated side note, I think that my dad¬†was more than shocked by this. ¬†In the weeks following The Tattoo, he wrote the word “Hola” in permanent marker on his foot in silent(ish) protest and then showed it to me every time I saw him.)

In any case, the words permanently stenciled on my left foot are a quote from the Cuban revolutionary Che Guevara. Controversial, I know. In Spanish, it says, “Let the world change you, and you can change the world.”

Never has this been more relevant to me than it is now.

When I think back to my old high school yearbooks, I remember a lot of the signatures urging “stay sweet!” or “don’t change.” ¬†Um. ¬†Thank God I am not the person that I was when I was 17. ¬†Seriously. ¬†With time comes perspective and if I could re-sign all of those yearbooks now, from the eyes of my almost-thirty-year-old-self, my message would be quite different….

Change.

Change every day.

Don’t harden your heart when you experience struggles. ¬†Grow. ¬†Learn. ¬†Experience.

Change.

Listen to the stories of others.  Open your heart to what they are telling you.  Seek to understand, to support, to love.   Be compassionate, caring, empathetic, kind.  Take what they have to show you and make a difference.

That is all we can do to leave this world a better place than how we found it.

When I think about little Miss Tessa and her place in this world, my prayer is that others will seek to understand when they interact with her. ¬†She doesn’t have to perform any great miracles or bust through any stereotypes. ¬†But maybe, just maybe, she will teach someone how to love. ¬†Maybe someone will connect with her in a way that will open their heart to more patience or acceptance. ¬†Maybe her smile will make a difference on a bitter day. ¬†Maybe including her in a classroom of typical children will be a greater lesson for her peers than can be found in any textbook. ¬†Maybe cheering on her successes will create advocates in unexpected places.

When we allow the experiences of others become a part of our hearts, we can change the world.

Will you let her change you?

J Sync 6 5 14

 

2 Comments »

Lesson #23: There is an abundance of support

The first few hours days (?) after a diagnosis can be, quite frankly, isolating. ¬†Few really quite know exactly how to respond. ¬†Somehow, your family has become different and you really aren’t sure how. ¬†You feel like the same person and entirely different at the exact same time.

Soon, support comes trickling in.  Or flooding in, as the case may be.  It flooded in our world.  We were blessed with that.

Since Tessa has joined us, I have joined UPS for DownS, NADS, a¬†Down Syndrome Diagnosis Network‘s Rockin’ Moms Facebook group, a local mom group called the MODSSQUAD, another local Facebook group called Gene Rockin’ Moms and a Baby Center group. ¬†There are a mountain of blogs that I read (check out my reading list on the sidebar). ¬†I follow Gigi’s Playhouse on Facebook and get their mail, also. ¬†We haven’t gone yet. ¬†Quite frankly, with all of the support, we’re still not sure where we fit in.

When I first started out on this journey, I felt like an impostor. ¬†I vividly remembered life Before. ¬†Ten months ago, I didn’t even know that advocacy like this existed. ¬†Special needs were not on my radar. ¬†I have no idea what I spent hours online doing. ¬†And I felt like, at any moment, someone who was further along in the journey, someone who doesn’t remember Before, might look at me, the fresh-faced newbie, and think, “Well, where the heck has she been? And does she think she can just come in here and start caring now? ¬†Where was she before?”

I really, really worried about that. ¬†It hasn’t happened. ¬†And it won’t.

Our NICU social worker told me that I don’t have to like all the moms of kids with Down syndrome that I encounter. ¬†Thinking back on that has always made me laugh. ¬†She told me not to feel like I have to befriend everyone with a child with Ds and reminded me that just because we have this diagnosis, doesn’t make our family exactly like any other. ¬†To me, sharing the common experience has helped me forge a bond with some other mommas that I hadn’t met before (I started to list all their names and it got too long, so I stopped). ¬†They are still young friendships. ¬†We are less than a year in, after all. ¬†But my mostly-extroverted self is loving this new opportunity to spread my social circle and connect with moms who can relate. ¬†And I don’t feel much like an impostor at this point. ¬†ūüôā

Not all support comes from strangers, though.  Tomorrow, a post dedicated to the ones who have been here since Before and are still here.

A completely unrelated Throwback Thursday picture, just because…. ¬†

10 month old Ellie

IMG_1828

2 Comments »

Lesson #21: Unintentional Ableism

Ableism – a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.

We would love to see Tessa break down barriers, exceed expectations, go beyond anyone’s wildest predictions of what she will accomplish in her lifetime. ¬†John and I have no preconceived notions for what she will do with her life. Full inclusion through high school? ¬†Why not? ¬†Go to college? ¬†OK! ¬†Open a restaurant like Tim’s Place? ¬†Dandy! ¬†Star in a TV show like¬†Glee? ¬†Great! ¬†We set no limits on her potential and watch to see what happens. ¬†Hopefully, that is a powerful force in her life that pushes her to do her best.

She might not do any of those things.

The reality of our future with Tessa (and with any child, really) is that we have no way to predict what will come as she grows.  It is certainly our responsibility, as parents, to teach our children to live to their full potential.  However, we cannot pass judgement on what that potential is.

There is still value in the life of an adult who bags groceries at the local supermarket.

There is still value in the life of an adult who lives with his parents and takes public transportation to a minimum-wage job.

There is still value in the life of an adult who “makes your french fries.”

(On a side note, I just need to vent for one second about the statement “well, someone has to make my fries.” There is nothing wrong with making french fries. ¬†And yes, someone really does have to make them for you unless you plan on climbing into the drive-thru window at McDonald’s and making them yourself. ¬†So why do we need to use this as a sarcastic comment to mock a person’s intellectual ability? ¬†Just wondering.)

Being successful has nothing to do with money.  It has nothing to do with power.  It has nothing to do with influence or intelligence or ability or stuff.  It has everything to do with abounding love, kindness to the most unkind people, friendship, compassion, and contributing in the best way that one can.

I get that now.

Truth.

This is part of the 31 for 21 Blog Challenge!

4 Comments »