Who She Is

She's amazing.

She's thriving.

She's annoying.

She an awesome big sister.

She's loud.

She's hilarious.

She's messy.

She sings and dances like the world is her stage.

She laughs and she cries.

She's a horrible hider and a wonderful fort builder.

She's compassionate and understanding, even when she's difficult to understand.

She has an amazing memory.

She knows how to get what she wants.

She loves her friends fiercely.

She's ridiculously cute.

She's an observer, far from a daredevil.

She surprises us every day.

She's so much like every other kid you know.

She's also a little bit different.

She's all of this and so...much...more.

She just wants to be given the chance to show you.




I guess I'm in for 31-for-21.  Stick around. Maybe I'll say something you like. I'm rusty, so bear with me...


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My daughter has Down syndrome.

Six years ago, before I even know there was a such thing as Down Syndrome Awareness Month, I couldn't say that.

It hurt.

The sentence would form in my head and before it could reach my mouth and even attempt to be expressed, it would get intercepted by my emotions, which would then form the perfect throat-sized lump while simultaneously creating a knot in my stomach that would rival even the most accomplished sailor's Bowline.

It hurt.

All I could think about was what they told me.

They came into my room when she was twelve hours old, before I could even see the symptoms on my own, before I had the opportunity to get to know her, before I had the chance to build up my defenses.

They looked at her and told me what they suspected. They wanted to take her blood. They needed proof of what they already knew and what it would take me quite some time to accept.

I consented, if only to show them how wrong they truly were. They may have been smart, but I had it on good authority that I had done everything right. I knew that my times of struggle were over. I knew that it was my turn to be happy. I knew this couldn't be my destiny.

They gave me black-and-white printouts from the internet. I could buy books from Amazon. I could try and breastfeed if I wanted to, but here were all the ways it would be difficult. I should look at these pages from a medical journal and try to decipher which condition I should fear the most. It was filled with percentages and descriptors, chances and odds.

She was no longer my baby. She was a worst-case scenario.

I learned to watch and wait for what I perceived to be the inevitable.

I counted how many times her chest rose and fell...wondering, "Is this heart failure? No, wait. Maybe this is."

I woke up in the morning, every morning, half-expecting her to have not made it through the night.

I read things that made me feel foolish for not having known sooner.

It was my fault because I declined the testing.

People asked me,

"But didn't you know?"

"How couldn't you know?"

"Can't they check for that?"

I didn't know to appreciate that my child was healthy.

I was too busy going to the Geneticist, Cardiologist, Otolaryngologist, Endocrinologist, Developmental Pediatrician, Audiologist, EFMP Coordinator, Pediatrician, and Lactation Consultant. I'm sure there were more.

I was speaking with the Parent-to-Parent Coordinator from our local Down syndrome family support group. I was reading things in online forums that would have done better to remain hidden.

At least the Early Intervention Case Worker, Physical Therapist, Occupational Therapist, Speech and Language Pathologist, and nurse for the weekly weight-checks came to me.

And people wondered why I wasn't myself.

It hurt.

I didn't know to appreciate that my child was healthy.

It didn't mesh with what was going on in my daily life.

This is why I believe that Down syndrome awareness matters.

Somewhere, there is a mom who is like I was and she feels lost and misunderstood.

Somewhere, there is a father who wonders if he's going to be able to love his baby.

Somewhere, there are grandparents who don't know what to do or say because all they know are things that are no longer relevant for a child born today with Down syndrome.

I want these people to be able to enjoy and celebrate this child.

I want their friends to congratulate them and be supportive.

I want them to know what's possible in ways that don't involve percentages and descriptors, chances and odds.

Life can be good.

Today, it is good.

My daughter has Down syndrome.

Pizza Day

So, yesterday, just as I had gotten Dez down for a nap, the phone rang.

Yes, the house phone.

While we do have one of those, the ringing part totally annoys me. If I could find a way to make it only work for outgoing calls, I would. Damn baby-waker.

But, anyway.

It was the school. They were giving me a "courtesy" call to let me know that I owed them money.

Say huh?! I knew I had written 50-11 checks to the PTA over the last few weeks, so what could I possibly have forgotten?

Playette's lunch.

$2.60.

Oh. Ok. Sure...

No, wait. WHAT?!

I clearly recalled creating the assembly line of the usual suspects and loading them into her lunchbox just so and then strategically storing her water bottle and snack in the side pouch of her backpack.

Just as I have done every flipping day she has gone to that school.

She doesn't like bread, so she gets tortillas. She eats slowly, so she gets just the right amount of crackers that she can consume in a timely manner. She needs her liquids thickened, so I pre-mix them for her so that no one has to figure it out mid-meal. She gets a fruit roll-up for snack because one day they were $0.25 a box at the commissary and I may have lost my mind just a little and filled up the cart so now someone has to eat them.

You know, stuff like that. This is my job, people.

This call was saying that I didn't do my job.

Not that they knew that, but still.

I needed the scenario explained to me slowly and in much detail.

Sucked to be the woman on the other end because she was getting all of this info second-hand and she had no idea how seriously I take my job.

Turns out that my super cute, way manipulative six-year-old told an adult, not sure who, that she had no lunch that day.

Poor thing! Bless her heart!

(gag)

Coincidentally, the hot lunch option that day was what she would choose as a meal if she could never have anything else again in life: pizza, french fries, and milk.

There may or may not have been chicken nuggets involved. I have not received 100% confirmation on that, but this is an on-going investigation.

She took great glee in describing the events to me when I interrogated inquired about them at pick-up. Someone gave her money! Pizza! Milk! French Fries!

I even took a video that would have been awesome to share if I hadn't dropped my phone in guacamole about two weeks ago and now the speaker is all jacked up and when I played the video back, every other word was cut out due to the unfortunate incompatibility of avocado and electronics.

Sigh.

We went on with our day, BD and I chuckling to ourselves over the absolute nerve of our child, but inwardly proud of her clever streak.

And then he went through her bookbag.

THERE WAS A BILL!

Or, if you're me, it's called a "Hey, mom (if we can even call you that), you screwed up and the PTA had to take temporary custody of your child and do the job you should have done and gave her money so that she could SURVIVE the rest of the school day because you obviously didn't care. That'll be $2.60."

I was happy to pay the money, really. She ate the pizza. And the fries. And maybe the nuggets, too. Also, the (non-thickened) milk.

But I mean, some people screwed up and those people weren't me. I could get all indignant about the details, sure. But the reality is that she's fine and she's happy and folks are on their toes with this "special angel" now. She probably really enjoyed the lunch line experience and felt like a superstar.

So, instead, I wrote this blog post so that I could get it out of my system and not bring it up in the IEP meeting tomorrow and take us all completely off-track. These are good people. Things happen.

One last thing: When did lunch start costing $2.60?! Shoot, I used to get free lunch for a while. This here is a pearl-clutcher for me.

Introducing...

Little Miss Supermodel!

Or something.

Close enough, right?

Playette is featured in the newly-released Toys R Us Toy Guide for Differently-Abled Kids. She's on page twenty-eight with the Big Piano and page sixty-seven in the index. (Heads-up: The guide site is not iGadget friendly.)

Someone, somewhere, knew better than to put her on the cover because this mama would have FLIPPED OUT and scared the crap out of Olympic gold medalist Gabby Douglas if we had been in the same room. I would have been hugging her and rocking like we were long lost play cousins. Even better, Nettie and Celie.

Yeah, they made the right decision.

But I digress.

We went to NYC several months ago as a family for the shoot. It was a great experience for Playette. She got to have her hair and makeup done, as well as wear an outfit picked out especially for her by a stylist. She also had a person dedicated to keeping her engaged and moving in accordance with the (awesome) photographer's needs.

I got to sit in the back, be quiet, and watch. As the photos came up on the computer next to me, the assistant would review them to see if they met certain criteria. So it was pretty cool for me, too.

Totally something we would do again.

Here she is as we were leaving. She had picked the hat out herself at H&M that morning and it was used in some of the photos. The lei was a gift from her hype-woman. (I'm sure she has another title, but that's all I can think of at the moment.)

Go grab a toy guide from your local store. They're free! I'll be making my way over to TRU shortly.

Oh yeah. The quote. I realize it's confusing because we are neither Jeanette nor Taylor, but I couldn't come up with something I was ok with being published so I didn't submit anything. I figure it's all been said before and I didn't know how to put into words how Playette has impacted our lives or makes me feel or...

I mean, she's my kid. I love her. I treat her like I would if she didn't have Down syndrome. I just didn't know how to make a quote be whatever it is I thought it should be.

Maybe I just should have said that.

Poster Child

Some of you may have seen Playette's picture on a poster via my FB page.

Last month, the IDSC selected her photo to help raise awareness and funds for the non-profit, all-volunteer organization that works hard to provide resources for families, friends, educators, and others whose lives are touched by someone with Ds.

We're both happy to support the IDSC and proud of our smiling girl who loves to be the center of attention, all in one endeavor.

Another reason I feel this poster is important is something that I touched upon yesterday. I feel that it's crucial for all of us in the Ds community and beyond to see that the condition does not discriminate. Ds is a completely random occurrence in the vast majority of cases. But something I learned quickly after Playette was born is that many, many people are surprised to learn that African-Americans can have Ds. It seems silly to me, and probably to many of you since you're here and know us, but it's true.

Why is that?

Well, because as minorities amongst another minority, our numbers are small. And then, when you get into cultural differences that are too varied and complicated to explain here, we just don't see one another often represented when we're participating in activities related to those who have special needs. What that can lead to is a lack of participation.

(Of course we all have Ds in common, but please refer to my "varied and complicated" statement above. And, yes, some responsibility does lie with the individual to step out of their comfort zone, but as a parent dealing with so much already, it's just one more barrier. One that the majority of the group does not have to deal with or understand, so please take that into account.)

That's another reason why the IDSC and other groups like the Minority Families Down Syndrome Network matter. There is a need to be met in our community and they are addressing it. If all it takes for one family to decide to come to a Buddy Walk or a Mom's Night Out or a conference is to see my baby girl on a poster and know they're not alone in this world? That people who look like them and can identify with certain nuances exist? Then I'm happy. We all need support and while there are many groups that address overarching issues that impact all of us, sometimes the additional comfort of not having to explain certain things is nice.

Back to the poster...

The caption is perfect for her.

She loves to be around other people and, once they get to know her, they have to love her. She wouldn't have it any other way. This chick is relentless with the winning-over-ness. Trust.

She's an interesting character, full of uniqueness, just like anyone else. I think what boggles most minds in relation to her is that she doesn't fit the mold they have in their mind for a person with Ds. They start out wanting to put her in a box that she doesn't fit into. In truth, I don't think most people with Ds do. Awareness is all about raising these limited expectations and eliminating antiquated preconceived notions.

A small donation can get you your own copy, as seen in the IDSC store. All profits go right back into the org, so don't hesitate to share with schools, doctor's offices, or any other place that could benefit from the knowledge that Down syndrome doesn't automatically equal a worst case scenario in life. I know seeing this could have helped me in my early post-diagnosis days.

Or maybe just get one for someone who needs a big, cheesy grin in their life.

That works, too.

=====Photo courtesy of The Captured Life. 

The inclusion of a diverse population of people with Ds is a priority, so if you have a child who happens to belong to a racial or ethnic minority group and you'd like them to participate in the IDSC's daily photo campaign, please contact me via the email in the sidebar.

Also, if you are the parent of an African-American child with Ds, send me an email and we can add you to the FB group if you are interested.

Storytelling

I can't apologize this time for not writing in so long because, in addition to just being overwhelmed with life, I made a decision. I've been battling for a long time over what to share and how and when. I've shared those feelings before in bits and pieces.

Also, as Playette gets older, do people even care about our little stories? Babies are cute, we all know that, and there's a new crop of 'em all the time, some of them even with extra chromosomes, and some of those with parents who blog. So why read here?

I'll continue to tell our story because of two things. Nothing innovative or particularly aha moment-y, but here goes:

1. I like to write.

2. We have a unique perspective being an African-American family who has a child with Down syndrome. (Look around you. Do you see many others on the web? No. Well, there you go. If you're not a minority, this may not make sense to you, but trust me...seeing someone who looks like you matters. Why do you think so many of us come away from Ds conferences feeling great? It's the same idea.)

So I will carve out time when I can and share what I feel comfortable sharing.

I hope that works for y'all.

School starts here soon. First grade. Can you believe it?!

I can't.

We've had an interesting summer here.

One filled with a beach trip and swim lessons and inclusive camp and birthday parties and therapy and medical appointments and Denver for the NDSC conference and volunteer work and ice cream and friends and family.

There was also a heavy dose of guilt for not handling the last half of the school year the way I probably should have. I've been taking steps to make sure that doesn't happen again. So what if it took me until this week to get to that item on my to-do list.

And then there has also been the additional yooge learning curve of balancing two children when the older one becomes insanely jealous because the younger one is starting to encroach upon the older one's ability space. In a nutshell, crawling and babbling was cool, but all this walking and talking stuff? No bueno.

Oy.

And this is why I run...so that I won't run away.

=====

Let me leave you with two links that are meaningful to me today. Clicky-clicky and take action if you like.

A community united will achieve great things.

and

Only eight hours to go! Help fund Rachel and the Treeschoolers and get great swag.

People Poll

Several months ago, Playette brought home a dixie cup from school with a seed in it and instructions to plant.

So BD took care of that.
(Shocker! Well, not really. I can barely keep myself alive, let alone a flower-like thingee.)

Nothing happened for a long time.

And now we have this. I say it's a (taller than the fence) monster weed. He says it's a sunflower. What say you?

Please pardon our piece of backyard. It is ass-tastic. We picked this house for the school, not the landscaping possibilities. Or the carpet. Or the layout. Or...

But I'm grateful!

Ok, back to the plant. I shot it from above, on the deck.