From: Us, To: You

Since last year was a bust in the card department, this year we have two!

Enjoy this time, friends, and we'll chat more in 2014.

The One Where I am a Total Hypocrite

A little over two months ago, I wrote a post about the politics of respectability and how it related to picture day in my house.

What I never came back to say was that the pictures actually came out horrible. 

I know, I know. How could that be? The one I took it home before school was super cute, right?

Pardon me for a moment while I laugh and laugh.

Basically, after all of that reflection I did in October, I had to go through the same multitude of emotions and primping so that I could prepare her again, today, to do retakes.

What makes it worse, and proves to me that I still haven't learned the lesson, is that the entire process has been a cluster eff of the highest magnitude. Any one of these things would have been reason enough to just say to myself that it wasn't worth it and that I needed to just chill about the whole thing.

First, our local weather was such that the schools started on a two hour delay today, throwing everyone's schedule off.

I could lie and say that I decided to drop Playette off to school out of concern for her safety, but that wouldn't be true. 

In my mind, I would take her, ask her to smile pretty, and 30 seconds later she would be on the way to class with nary a disruption.

Of course that isn't what happened.

Even though we had about five hours to get ready for school this morning, it was still crazy getting both kids out of the door. I couldn't find the bus dispatcher's number. I was googling and calling and texting, trying to give notice that I planned to take her in myself. Then, I got to the school only to find that everyone else was driving their kids in, too. Or, maybe it's always like that in the morning. I don't know. I like the bus.

Anyway.

Got the kids inside the school, got a visitor sticker, and walked Playette to her classroom. By this time, the school day had started.

I am now officially creating a huge distraction because I have a baby with me. There are many squeals of "Baby Dez!" And "Hey, that's [Playette's] mommy!"

Oops.

Not what I had in mind.

We hustled to the media center only to find out that the photographers were about 45 minutes away from being ready to start taking pictures.

Oh, but I'm no quitter. Did I take my toddler home and just hope for the best? Of course not!

Instead, I cried on the inside, knowing that between that moment and noon would be when Playette would have lunch. I also cursed myself for packing chocolate milk.

I left her in her aide's capable hands and went off to run errands with Dez to kill time. 

This would've been the perfect time to say, "You know, Crittle, it's going to be fine. You really don't need to keep this up. You have plenty of other things you could be doing."

But, noooo.

I went back. Got another visitor sticker. Went back to her classroom. Caused another commotion. Smiled weakly and apologetically to her teacher. Went to the media center. Cut the line. Felt extremely embarrassed when they snapped about 20 pictures and none of them had her looking at the camera. Felt the heat rising in my face. Mumbled "Number 24 is fine. Thanks." when it really wasn't. Grabbed my kid. Thanked all of the other children for sharing their naughty elf stories with me while we waited. Dropped Playette off at PE. 

And then I let the office ladies know that I would see them soon because I have to go up there for a third time in a shortened day to pick her up for an appointment after school.

See? Easy peasy.

[Insert massive eye roll  here]

Side note: A friend reminded me earlier today about my own retake story. I'll come back and write about that because it is utterly ridiculous. I've been a nut since I was a kid, apparently.

Special to Me

We supported a 5K today. It was a fundraiser for the two teams with members with special needs on the cheerleading squad in which Playette participates. 

A couple of friends from my running group joined us, which was great. The three of us did the race while BD, Playette and Dez served as cheerleaders.

It was a tough course. Lots of twists and turns, lots of hills, in addition to slick leaves on the trail. I also think it was probably the longest 5K I've ever run in my life.

But we all made it to the end. We had fun and raised money. Mission accomplished.

It was a bit of a walk back to the parking lot after the festivities had concluded. Playette and I were on one side of the road, laughing and joking around. On the other side of the road, there was a mother with her young daughter. As we approached the car, we crossed the street and ended up right in front of the other mother and daughter. 

The little girl spoke up and asked her mother question. 

"Is she special?"

Her mother didn't respond. I assumed that she was trying to formulate what to say.

The little girl was impatient so she turned to me and asked the same question.

"Is she special?"

Her mother apologized, but I told her no it was perfectly fine. This was a great teachable moment.

But...I had nothing.

Crap. Here it was. My chance to say all the right things. My opportunity to teach one small child and, hopefully, make some sort of positive impression. Why didn't I have the perfect words?!

So I said: "She's special to me."

I knew that was a cop-out. So I threatened my brain to come up with something better. Quickly.

I decided to engage her in conversation. I asked her if she noticed that Playette was just a little bit different than her. She said yes.

I asked her if she knew that her body was made up of lots of tiny cells. She didn't know what a cell was.

I took a different approach. I told her that when Playette was born she was given just a little something extra in her body. I told her that she was a lot like her but there was something a little different that made it take longer for her to learn certain things. 

That she understood.

I told her that something different is called Down syndrome. I asked her if she knew what that was. She said no. I told her that was okay and it really didn't matter right now. 

I asked her how old she was and she told me she's six. I asked her if she was in kindergarten or first grade and she told me first grade. I said,"That's great. My daughter is also six and in the first grade. You have a lot in common already."

I asked her if she was learning to read. She told me she didn't know how yet. I told her that Playette was learning to read and that when we were making all those jokes while we were walking it was because we read them in a book that she has been enjoying lately.

I asked her name and she told me. It was extremely close to Playette's actual name. She really enjoyed that coincidence. 

She said, "It's like we have the same personality!"

I exhaled. 

We had reached our destination. The girls happily said goodbye to one another and everyone parted company with a smile on their face.

Failure thwarted. 

BD's Annual Post: Family

It’s not often that I get to jump on the blog and say my piece.  Actually, this is the only time each year I jump on the blog to say my piece.  We all know this is not my thing, but every once in a while (Halloween), I get overcome by the blogger spirit.

I love that everyone has a place to learn about our experiences as they are so eloquently expressed by “The Mama”.  This blog has done great things for our family as far as connecting goes. 

While our lives are nowhere near perfect, we still love sharing some of what’s going on with the world.  We’ve connected with and met some fantastic people throughout our time on this journey.  A lot of those folks we met via blogs and the internet. 

There have been times of laughter and times of sadness.  There have been times were we were apprehensive and scared about the future and what lies ahead.  The support from people all around the world is amazing.  It makes us feel as if we always have someone who cares about us and what we are dealing with.  There are people out there going through the same struggles, be it ridiculous amounts of medical appointments, school drama, or just a crazy toddler who likes running into things.

This great Ds community, connected via the internet, has helped us stay on the path, navigate,and continue to push forward when life comes at us hard, as well as when things are going well.  We would be lost without it. 

Everyone has “actual” family and “actual” friends, and our experience and support with them is different based on the history that came well before our entrance into the Ds world.  The added support and knowing that the Ds community all around the world, families like us everywhere,  have our back makes getting out and pushing forward through the challenges of each day so much easier.

So for those that read this blog, thank you for your support.  For those who write their own blogs and share their experiences, thank you for your support.

Just know we’ve got your back too, because to us you all are family.

$21 for 21 Dreams

The International Down Syndrome Coalition has always supported our family, so we have looked forward to the opportunity to do the same for them.

Now is the time. Their current "Grow with Us" campaign is going on now.

I've created a team page and welcome your help to reach the goal.

All donors will be entered in a drawing for a moderately-valued gift card.

Hey. I don't have an income, remember?

While the goal is at least $21 per person, anything helps! Bonus: it's tax-deductible.

I explain it in a lot more detail here: Playette's Peeps

Won't you accept this challenge?

Scarlet Fever

I woke up this morning with every intention to send Playette to school today. She seemed like she was on the mend yesterday.

Instead, I took one look at her and it was a quick decision to take her to the ER. Her regular doctor's office didn't open until 10 today and her appearance scared the crap out of me. Her face was swollen and red, her eyes almost shut. She complained of pain and her trunk had a rash that was spreading.

I think there are a couple of reasons I'm so hypervigilant when it comes to her health.

1. She just doesn't get sick very often, so I don't have a lot of experience in this area. 

2. Ever since she was born, I've been waiting for the other shoe to drop regarding her health issues. Even though I thought it was probably scarlet fever, part of me was extremely scared that it was something else. Something much worse.

On top of that, scarlet fever just sounds ridiculously super scary to me because that's what Mary Ingalls had, or maybe not, but I digress.

Our hospital has a separate pediatric ER and I figured there wouldn't be much of a wait. Also, with the choice of taking her there or taking her to urgent care, for us there is no price differential to consider. So I figured I'd take her to the place that would most likely be a one-stop shop.

Remember, I was thinking the worst.

Her spirits were good though, so that helped to keep me from breaking all the way down.

I'm not going to show you a picture of what her face looks like, because I wouldn't want her posting one of me if the tables were turned. As if to let me know her own desires, this is what happened one of the times I tried to take her picture in the exam room.

Her throat was swabbed because the doctor agreed with my diagnosis. We both had our fingers crossed that it would come back positive for strep.

Playette handled that stick to the back of the throat about 100 times better than I ever have.

While we waited for the results, Playette entertained herself by watching our family picture slideshow over and over again. 

BD arrived and kept Dez occupied, thankfully. 

The test came back positive. She immediately got a dose of antibiotics and Motrin, we were given a prescription and headed home.

It looks like we are going to be spending some quality time together today and tomorrow, at a minimum.

Hopefully, she'll be back on her feet and no longer contagious by Halloween.  

In the interim, I am getting more than my fill of Nick Jr.

If only amoxicillin made her sleepy...

"A Special Trip"

That's what I told Playette we were going on today. She was home from school because she still wasn't feeling well and I had a mission that had already been planned. I decided to allow it to be a surprise. She was very into it and wanted to pack a suitcase. 

It wasn't that kind of trip though.

When we lived in Virginia Beach, we made friends with a family that had quite a bit in common with ours. They lived only a couple of minutes away, both of us are Navy families, and we each had one child with Down syndrome. We even shared therapists.

The kids got along famously. I've written about how Playette used to call her friend "Pillow" because she couldn't pronounce his name. 

When it was time for us to move, it was a difficult transition.

As recently as Friday, Playette was asking about him. She does that often. She really misses him and will even call other boys by his name.

Before we did move, we added Dez to our family. And then this spring, their family added a new son as well.

As a matter of fact, a couple of other mamas who also had only children welcomed boys to their families as well. Must've been something in the water down there. It's nice that we can share this new experience together, even if only virtually. It is hugely different having a typically-developing child after your first child has Down syndrome.

So, while talking to my friend a while back, I realized that I could very easily pass along baby clothes to her as Dez outgrew them. The only problem was that we no longer lived anywhere near one another and the amount of clothing was growing by the week.

Since she was visiting family about two hours away from where we live now, we decided to meet in the middle to do the exchange today. While it wasn't part of the original plan to bring Playette, I was really glad that she'd be able to participate after all. 

All I needed to do was make it across a bridge that scares the everloving crap out of me. Twice.

I did it. Twice. 

That's how you know these folks are special.

It took the kids a little time to warm up to each other again, but it went well. We sat at a rest stop picnic table and the kids shared snacks while the mamas talked. 

I needed that. 

And they're just too cute together. 

Doesn't he look like a mack?!

The whole gang.