I’ve been thinking a lot about Down syndrome. (Who’s shocked?) And I’ve been thinking a lot about seeing people with Ds out and about in my community - which I don’t. I see people with Ds everyday at Elliott’s school and at GiGi’s Playhouse of Houston but that is expected. These are Ds focused institutions, of course that extra chromosome will be present - in abundance!

Why don’t I see this extra chromosome at the gas station? At the park? At Target? At restaurants? At work? Why are people in the limelight not having children with Ds? (another topic… for another time…)

On the rare chance I do see someone with Ds out and about, I call this a “celebrity sighting”. I find it immensely more invigorating, exhilarating and I am significantly more awe-struck than if I see a certified celebrity. I would rather have a young adult with Ds check me out at Target, then have Brad Pitt check me out at Target. Sorry Brad…nothing personal. (Wanted to make sure I apologized as I am 99.9% sure he is reading this blog.)

I have three accounts below which I wrote quite awhile back. I must tell you it was interesting to go back and re-read something I had written more than a year ago. Feeling those feelings again, seeing how my voice may or may not have changed - interesting. These short stories represent two of the most impactful celebrity sightings I had prior to Elliott’s arrival, and one I had just after her first birthday.

I believe these experiences to be signs that our daughter was meant to be who she is and meant to be our’s.

Groceries + Guilt

Somewhere between week 19 and week 35 of pregnancy I was shopping at Whole Foods. I was having myself a stellar pity party - complete with outward disdain for anyone around me who was happy. Especially those with perfect children. How dare they show themselves in public when I am carrying a child who has all of these problems... have they no compassion?

After making my selection of organic, yet highly caloric, ice cream I waddled my way to the check out. In front of me was a mother with her beautiful son, around 4 or 5 years old. As she unloaded her groceries onto the belt I could feel myself brewing with jealousy. I painted her life picture in a matter of moments:

she got pregnant on her first try.

had not lost any babies before getting to meet them.

her pregnancy was uneventful, enjoyable and her baby healthy.

she never threw up in moving vehicles; while also operating them...

...Just as the story was getting really good, God smacked me in the face. HARD. 

Her husband strolled up. Two little girls stood holding his hands, one on each side. One of these girls had Down syndrome...UM. WHAT.

With my mouth gaping and eyes wide; I stood paralyzed. Unable to move, unable to react. The little girl who had Ds was only wearing one shoe, the father just now noticing while it was the first thing the mother pointed out. (Ha, oh men.) I watched as they all scrambled to load the purchased groceries into the cart and retrace their steps, aisle by aisle, to find the lost shoe. I watched this family as they laughed and went about their business just as any family would regardless of their children's chromosomal count.

On the inside I was screaming to get this women's attention. To tell her my unborn baby girl has Ds and I need help to get through this life that was chosen for my family and I. How did she do it? Did she have dark feelings? Does she still have them? Is her daughter thriving? Is her daughter happy? Help me, lady, helllllllllllp meeeeeee!

I said none of these things.

Rather, I slowly strolled to my car deep in thought about how my painting of this woman and her son were wrong. Dead wrong. I was so far gone in my own self pity that I failed to see others and their own journeys. I got a huge dose of ice cream and guilt that day. I was reminded we have absolutely no idea what other people have dealt with, are dealing with, or will deal with.  And it would serve me well in life to remember this gem of knowledge.

Trick or Treat

Halloween 2017. The Houston Astros were in the world series. A phenomenon that hadn't happened since 2005... and since I live in Houston, it's expected that folks were excited. I wasn't really because - ew, sports. But, I was excited that my girl was at home for her real "first" Halloween as the Halloween before that was spent in the NICU. She had also turned 1 year old a mere 10 days before. Plus, and perhaps most importantly, I was pumped to put her in an adorable costume as she truly is my Wonder Woman. For your viewing pleasure: 

In addition to the pesky sports distraction, was the weather. It was a gloomy day, filled with rain, dark clouds and extreme humidity. Not an ideal environment for polyester costumes, wigs and face paint. Eventually, the desire for candy persevered and children emerged to tackle the elements. 

Rather than knock on strangers doors with a one year old, we opted to open the garage and park it in some lawn chairs to pass out candy. Brad in one chair, me in the other, Ellie alternating laps, and a giant bowl of candy situated between us. Kid after kid came up the driveway, obtained their candy, then raced to the next house. Towards the end of the evening, the crowds thinning, a particular family approached us. A mom, a dad and a daughter - around 9 years old. This was my favorite family of the evening. Why? This 9 year old had Down syndrome. It was my kind of a celebrity sighting. I was more excited to see this girl and her family than I would've been if Angelina Jolie walked up my driveway with her flock of children. 

Here is the weird part - I was so excited that I said nothing. Nothing beyond what I said to all the other families that is; 'Happy Halloween, Oh your costume is so <insert appropriate adjective here>! Enjoy the candy." 

The truth is that I rarely see people with Down syndrome out and about in the community. And the harder truth is that this absence of celebrity sightings destroys my soul. WHERE.ARE.THEYYYYYY!?!? So I see this beautiful child walking up my driveway and I say nothing about the shared trait between her and my Elliott?... Real cool Aubs, real cool.

They walk off, headed to another house and the next thing I know, I begin to tear up. I look at Brad who says “well, go after them” and despite my knowledge of what I'm about to do being crazy... I jump up. I run, nay - I jog, ehhhh. Alright. Fine. I furiously power walk (grandma in a mall, wearing a matching wind-suit style) towards them. Yelling in a very appropriate and neighborly voice "Excuse me! Hi! Excuse me! Yes! You!" as the dad turns around. He motions to mom and daughter to keep walking as if ready to defend the family against this crazy woman hurrying after them (yeaahhh, I get it dad. I would too.)

We reach each other and I exclaim "Hi, we are that one story house a few back and well, does your daughter have Down syndrome!?" (I really need to work on my introductions). 

He replies, apprehensively, "Yes..." awaiting the purpose of my question. I immediately exclaim "mine too!!" thrusting my open hands to my chest.  It's an odd feeling to grow an immediate and strong bond with someone whose name I don't know. But I did - instantly. (I find this happening a lot since Elliott’s arrival. That extra chromosome tends to connect people - bring them together into an underground club I never knew existed before her. It’s like a speakeasy during the Prohibition era where entrance is based upon your kid’s DNA rather than secret handshake or password.)

The dad calls to the mom and daughter, gesturing them over. I go into a long winded and totally unnecessary monologue about Elliott and how I'm so excited to meet them, blah, blah, blah. I ask them and their wonderful daughter all about themselves. The family has Latin roots and spoke with a bit of an accent. Turns out the daughter was 9 years old and speaks both English and Spanish. I barely speak English...  

I wanted to drain this mom and dad of all their knowledge - squeeze them like sponges. Taking every bit of experience they've ever had for my own use. 

Brad walks up behind me, carrying Elliott. I introduce everyone while dreaming of future play dates and alternating dinners at our homes. 

A Tour of Tears

The day after we learned our daughter had Down syndrome I called the Rise School of Houston to inquire about the school, cost, calendar, admission process, everything. One of the items of business was to schedule a tour, which we did - for a few months out.

The time came for the tour and while I can say I had healed, somewhat, from the news of my daughter’s extras, I wasn’t particularly at peak emotional strength. I didn’t want to shed a single tear during that tour. I didn’t want anyone to think I was sad about my child and packed with concerns about her life - even though, I was. In my mind, to cry on this tour was for me to insinuate there was something sad about my child’s life or about the life of any of the other students. Which was not right. It didn’t matter that I was truly still sad; it wasn’t right. Therefore, I put on my big girl panties and walked into the school. My heart encased in a temporary, steel cage blocking emotions - covered by a floral maxi dress.

We’re off to a great start. I’m feeling strong, I’m feeling inspired, and I’m loving all that this school has to offer not only my unborn child but the world. We walk into each classroom to get a sense of what each age group focuses on and how the kids evolve throughout their tenure at Rise. Grateful to have our tour guide, J, navigate us through the halls. She is one of the five therapists at the school but she is also similar to that of the prom queen; every student squealing with delight when they see her walk into their respective classroom. Seeking her attention, seeking a hug. We make our way to one of the last classrooms. I can’t tell you the age group but I can tell you the scene…

J opens the door and we follow right behind. The kids are at those tiny tables in those tiny chairs that seemed quite large when we ourselves were that tiny. They are clothed in smocks dripping in crusted old paint; never to be removed. The old paint whispering stories of past students art projects and a joyful childhood, while present students add to the narration unknowingly.

A little girl in pigtails and glasses, G, casts her arms up in a swift motion that exclaims ‘take this smock off of me so that I can hug J’. The teacher says, “Ok G, do you want to hug J?” G nods with enthusiasm and the teacher begins to help her remove her paint adorned smock.

At the door (from left to right) stood me, J and Brad. With G now displaying her clean shirt, she shuffles hurriedly towards us as we smile in anticipation of watching her to dive into J’s arms.

She doesn’t.

Instead, with zero hesitation, she makes a direct beeline to Brad who instinctually bends down with open arms and scoops her up, all while giving J a look to ask ‘Is this OK??’ J nods and smiles. She says “G knows a Daddy when she sees one”.

I’m not sure whose eyes welled with tears first - me or Brad. Regardless, it was at this moment that I failed in my mission to project strength - my steel cage melted and disappeared never to be seen again. We stared at each other intently as G hugged Brad like she’d known him for years.

Thank God this was near the end of the tour as I could barely pull myself together, if at all. Brad and I walked to the parking lot, silently - our minds flooded with thoughts of the future.

We climb into the car. Brad, clearly holding back something, looks at me. (Mind you at this point in the pregnancy we are unsure if Elliott will survive and if so, for how long.) He somehow manages to say “I want our daughter so badly” and then cries effortlessly as if that statement was the dam that just broke his restricted feelings.

I know I speak for Brad and I both when I say we will never forget G or this day.

Until the NexT21,

Aubrey