7 Days Old

Because we watch way too much Nick Jr over here, I can't get this song out of my head.

Every day, it's "Oh, look at me, I'm ___ days old!"

So, yes, what that means is that our newbie was born last week. Finally. At 41 weeks + 5 days gestation, Dez came into this world like gangbusters. He was just over 9lbs and 22 inches long. He's got the largest hands and feet. He's so alert and reminds me of a much older person. He's flipping adorable.

I would have to tell you the whole story for it to make sense, and I will, but suffice it to say for now that things went just a leetle away from the plan in order for him to be born.

And by a leetle, I mean "almost as much as they possibly could."

But I'm happy with the outcome.

And so very, very grateful.

It's a totally different experience, coming home with a kid that you're not staring at, waiting for any sign of heart failure because it sounds sooo horrible and you don't want to miss it by accident.

Yeah. I haven't been doing that.

I also haven't been crying non-stop, paralyzed with fear about when the other shoe was going to drop.

He's passed every screening, so all those trips back to the ENT and Audiology with a newborn haven't proven necessary.

We haven't had to brave two hours of sweat-drenched freak-out (mine) due to hearing screams like I've never heard before (hers) at the Endocrinologist's office, trying to squeeze out enough blood for a CBC. No waiting for a doctor to come find an artery. No decision to be made about whether or not to stick a needle in the baby's scalp.

No geneticist, no social worker, no staying up all night trying to figure out on my own what "EI" means and how to get connected to it.

There have been "Congratulations!" instead of "I'm sorry."

I haven't lost any friends so far that I can tell.

It's quite bizarre.

Sleep deprivation? Check.

Sibling adjustment issues? Check.

Mom guilt? Check.

Icky and painful childbirth recovery symptoms? Check.

All that delightfully boring, run-of-the-mill stuff? We're going through it.

But I can't help but think of all that I missed last time.

How scared I was then as compared to how happy I'm allowed to be now.

If you've been here, you know what I mean.

If you haven't, I appreciate that you're here and learning.

Next time, I'll share some pics or something. Today was more a day of reflection.

Again, I'm grateful. For all of it.

Without the cloudy days, you don't appreciate the sunny ones nearly as much.

Seriously Stubborn

I'm realizing that it's difficult for some people to believe that I'm still pregnant.

But I am. 41 +1.

So I asked BD to take this photo of me yesterday as we were on our way in to my appointment to check on how our newbie is doing.


Apparently, he's just fine. He rocked the ultrasound and non-stress test. The only "issue" is that he's measuring big. I know it's just a guesstimate and all, but petite mama + big, comfy boy that doesn't appear to have any immediate plans to introduce himself brought out some concerns amongst my medical support staff.

That made yesterday a tad bit stressful for me.

Today is better. I have smart and caring friends that are earning their keep with reassurance and confidence in me.

And, also, I'm healthy. Doing great, in fact. No complaints other than the stuff that's par for the course at this point in any pregnancy. I still fit my wedding rings. I'm actually begging for some discomfort of the labor variety.

I still have every hope that Dez will come and greet us on his own, but if not, the interventions begin on Sunday night. Boo.

Just hope for the best, 'k?

Pee-Pee Pants and Preparation

Still pregnant. Just in case anyone was wondering.

Also? No signs of impending labor.

You do know that whole "due date" thing is just a suggestion, right?

Intellectually, I am aware of that fact as well, but there's just something about that day going by that does something to a gal. Add in the possibility of still having as many as twelve more days to go and...

Personally, it has made me certifiably loony. Either I'm laughing or crying. Eating or sleeping. One extreme or another. Moderation has gone out the window.

Yesterday, I spent quality time with my OnDemand. Never before had I shown interest in Celebrity Apprentice, but yesterday? I needed to watch the season. And then get unreasonably upset that I couldn't fast forward because I would fall asleep, the show would end, and then I'd wake up and have to start from the beginning. Again. And again. Talk about first world problems.

[I did actually learn something though. Clay Aiken's charity sounds amazing and him visiting the kids made me all teary.]

Today, I decided to make myself at least somewhat useful. I got up and showered and dressed. Before noon!

Wait. Just to clarify, I do wake up in the mornings. I am responsible for picking out Playette's clothes, doing her hair, and taking her to school. After that, I usually have good intentions, but many a day I end up back in the bed with the curtains drawn.

Because I'm that awesome. #notproud

Oh, and get this:

We rearranged our bedroom many weeks ago in order to get ready for the newbie. I gave up my nightstand and replaced it with a bassinet.

I have now turned the bassinet into a nightstand.

Turns out it's quite the convenient spot for the remote control and there's this little ribbon slot on the side that allows me to not have to reach to the floor, huffing and puffing, for my cell phone charger. It slides right in! Huzzah! And it's also a great place for my water bottle. Who knew?!

I promise that I'll adjust appropriately when the time comes.

Whenever that may be.

Gah.

So. Wondering how Playette is taking all of this?

I think she thinks that I'm the biggest liar ever. She's been waiting on this baby for a very. long. time. I am starting to think that she's going to be scarred for life when he does come because Dez is just supposed to live in my big belly FOREVER. Or so it seems.

We've been struggling with a lot of clinginess and attention-seeking behavior lately. And then there's the whole accident thing.

This week, there were three days in a row where Playette came home in her spare clothes. I just kept washing them and sending them back the next day. It made it easier for me to assess whether something had happened or not because my brain was having a hard time recognizing right away whether that was what she had worn that morning or not.

Enter the pee-pee pants.

They are teal and velour. They just barely still fit. They are obvious.

And I've seen them way too much this week.

We went from no worries in the land of toileting to my heart dropping every afternoon.

We've had conversations. Grown-up conversations about how amazing our bodies are that they tell us when to eat, drink, and...POTTY! Remember that part? Yeah. Stop waiting until the last possible second, kid. Or, maybe tell a teacher you have to go before you start? Because "I'm wet," is an awesome sentence and all, but it's not the most desirable use of your vocabulary at this particular time.

So now you see why I've been taking to my bed.

It's just stressful.

And, again, intellectually I know that other kids in her class may wear pee-pee pants, too, occasionally. I just don't want anyone to look at my kid (any more) differently. I want so badly for her to just blend.

*sigh*

In the effort to help her adjust better to the actual bringing home of baby, we went out today and got a few things. Since regression due to change related to a new sibling is totally normal, it was suggested by her teacher that we try to put her in a mommy-type role instead of allowing her the option of reverting back to that of baby when Dez arrives.

That meant going to the toy store today. (Good thing I got dressed!)

She got this:


And this:

And then we stopped at the library to check out this:


This was all pretty impromptu and we're not really the toy-buying types (Playette is just so content with what she has), so I hope it goes over well. The doll and gear will remain in the trunk of the car until needed and she's already "reading" the book. It seems perfect for her and this situation. BD really impressed me by finding the book in under three minutes, quite randomly, since we got to the library right before closing time.

I wish I could say that we put more thought into this whole thing, but we went from having sooo much time to having none, so, again with the winging it.

There's a full moon tonight, y'all. Think labor-inducing thoughts, 'k?

35

Every time I think to come here and write, I decide to do something else instead.

Like sleep. Or eat. Or rant about my situation at work.

Fun at parties, that's me!

You know, I tried to quit my job a few weeks ago, but the circumstances made me so angry that I chose fight over flight. It's not the best timing for sure, but I feel like it's important for me to take a stand against the bad behavior. We'll see what happens. At the very least, I am now down to part time. Five hours a day, four days a week. Yesterday ended the first week with that schedule and so far, so good.

I've been thinking on and off about Kindergarten for the (not-for-long) Littlest. For a while, I debated taking the extra year for her since her summer birthday forced me into thinking I had a choice in the matter, but then one day I woke up and it felt like the decision was made.

You ever had that happen? Obsess x 1000000 and then *poof* it's over?

Yeah. It doesn't happen often for me, but I was grateful in this case. It was just like a peace that washed over me and then I heard "Why wait?"

I couldn't come up with a response to the voice in my head (which, yay?).

Like, really. What would be the benefit for my child to spend another year in Pre-K? So at least that part's done. And then, on top of that, we should be moving again before the new school year, so no point in me battling with the people here about placement (though, of course, we'll update the IEP appropriately). That just gave me years back on my life. No unreturned phone calls, no explaining why I think she should be here and not there, no begging either for or against the home school.

Buying myself some time is nice.

Because one thing I can't keep from happening is this new babe.

He's coming.

Soon.

Earlier in the week, I realized that I was 35 weeks pregnant and that meant that I had 35 days to go until my estimated due date. Days.

I'm a 35 year-old woman 35 weeks into my pregnancy with about 35 days to go.

Pardon me while I go freak my freak.

People ask me if we're ready.

What's "ready"?

Like, do we have stuff? Yeah...some. I didn't throw anything away after Playette so the pack-and-play, swing, bouncy seat...all those biggies are cleaned up and in good working order. Some great friends have donated boy-type hand-me-down clothes and other items, which is awesome.

But are we ready-ready?

Um. Well. Er.

It's just...different. We're not as anxious about things as we were when Playette was born. I think we realize that whatever we don't have and end up needing, we'll get. Or maybe we don't really need at all.

Also, and more importantly, we aren't naive. No matter how much we want to be blissfully unaware, we know that things can happen. There are no guarantees. And with that in mind, our primary focus is on the health and well-being of this little boy.

No surprises would be a bonus.

Everything else is gravy.



And now I want gravy. Dammit.

Feeling Chatty, Pt. 2

I had a pretty crappy day yesterday and, unfortunately it was related to my being pregnant. I must always first clarify that it's not baby related. My issues are emotional, not physical, and resulted from my having an appointment with someone that just plain didn't know how or feel like being compassionate at that moment. It was pretty bad, y'all.

And I've been reminded, yet again, that I really don't know enough about the wee babe to say whether he's ok or not. I just simply don't know. I'm waiting to see how things go. Which, ironically, was what I was planning to talk about next: my choices related to prenatal testing (PNT).

It's strange going from one pregnancy/child that was so heavily monitored to one that I'm just supposed to, based upon my own decisions, let be.

[We did not have a prenatal diagnosis with Playette, but she had decels in her heart rate that became evident when I went to the hospital for a high fever and ended up receiving twice-weekly non-stress tests and fluid checks throughout the third trimester.]

The last time I had a look at him (him? - I guess), the newbie, was almost three months ago. I'm just supposed to trust. I'm not sure how to do that, exactly. I mean, I've already been on the other side. Being surprised. That didn't work out well for me.

But before about a week ago, I was fine with this. So I do realize that I had a hand in this fate. I just never thought that I'd start freaking my freak near the end.

Am I afraid of Ds? No, not really. When you know better, you do better.

Would it kinda rock my world if he had it? Hell yes. Not like before, but Ds is not what I'm hoping for, honestly. I'd really like to give 46 chromos a try, if that's ok. I also know that that guarantees nothing.

I know that there are people in the world who are quite sure that they know my position on PNT. For some, the fact that I'm 35 and have already had a child with Ds is enough to make an assumption that of course I'd only be being responsible to seek more information. Or, you know, make sure that it didn't happen again.

And that's totally ok for some. I don't fault my fellow Ds mamas for requesting some peace-of-mind in the early (or later) days of their subsequent pregnancies. We're all part of a club that you just can't understand until you've been initiated. You're no longer naive, as much as you would like to be. You can't turn off the part of your brain that wants to remind you that things don't always work out the way you think they will. And you also have been exposed to a world where Ds is far from the worst thing you can ever conceive of...you now get it when people call Ds "the Cadillac of disabilities."

I also don't give my friends that have chosen to adopt another child with Ds the side-eye. There's room for all of us and I can see why they love their babes to pieces.

Bottom line: I declined everything. So much so that I felt off going in for the 20-week ultrasound. I felt like, "If I didn't want to know anything, how does it make sense that I'm walking knowingly into a situation that could tell me something?" It felt hypocritical in a way. Like the two positions didn't match up.

Again, I'm just talking about my own personal situation. And I didn't start to question the ultrasound until maybe a day or two before it happened.

But I did it. We did it. And everything was "fine."

No follow-ups.

Strange. For me. I live in the land of See You Next Time.

And this time? There was no Next Time.

Which was good. But still strange.

Please also know that I believe that the 1% additional "risk" they offer to people like me, in addition to that associated with my "advanced maternal age", is a load of hooey. 1%...1 out of every 100. Not possible. I've heard of spontaneous, random Ds reoccurring biologically in a family, but it's far, far lower than 1% of the time.

Anyway.

That brings us full-circle to what I had been planning to talk about when I mentioned that "something really interesting happened...[and] it wouldn't be brought to my attention for many months."

You see, I read Alison's blog and she had mentioned conducting interviews with people as part of a research project that she was doing on PNT (she still is, by the way, in case you're interested).

I was all in. I am an open book. Pretty transparent, actually.

Our phone interview took place in July. Right before I got pregnant. So, while I was running my mouth, I had no idea what was about to happen.

She followed up with me in December, after I announced my pregnancy on this here blog. She asked me some questions and then...she asked if I was interested in hearing some of what I had said five months before.

Wow. The timing was just...wow.

I couldn't resist. Here's the part of the interview that related to this topic:

I really honestly don’t even know what I would do if I was faced with that now, because it’s like I know just enough to be dangerous, but I don’t necessarily want another child with Down syndrome, but I also realize that it’s not the life change that I thought it was.

I’ve gone back and forth on what would I do? I don’t know that I would have a CVS or a triple screen or a quad screen because I still believe that they are—that there are a lot of unknowns and if I had the amnio, I don’t know—would it be for peace of mind? Or would it be—I don’t know what it would be for, and I would really need to know what I was doing it for before I did it. But I couldn’t imagine looking at my child and saying that I didn’t want another one like you.

I’m not naïve anymore, so walking into another pregnancy, a second one, or any subsequent pregnancies, I would be –I couldn’t just be happy-go-lucky about it because I would wonder. You know, there’s a million things that could go wrong. And Down syndrome—as much as they try to make it seem, at least for me, like the worst possible thing that could happen, it’s not. So, you know, did I just get off easy? I don’t know.

Full disclosure: I read this when she sent it to me over six weeks ago and then not again until I just pasted it here. Any similarities to what I wrote today are purely coincidental. It's not like my memory can be trusted, so this is just real stuff here, folks.

It's a complex set of emotions and thoughts, and run-on sentences and question marks come with the territory.

It's not just a black and white issue with me.

I wish it were sometimes.

I do feel very fortunate to have these thoughts documented though.

That, I do know.

And I love this little inside my big, brown belly to pieces. Regardless of anything, I can't wait to meet him.

Or her.

Whatever.

No guarantees.

Gymnasstics

What? That's not how you spell it?

So this whole gymnastics thing started out on a high note. The lady who taught the class used to offer one, gratis, to children with special needs via Special Olympics. For some reason, that stopped. I heard it low participation. I called her early in the summer after seeing a sign and asked if the class might start up again. She said she'd call me once school started and let me know. And she actually did. She told me the available time slot and offered a free trial throughout the month of September.

The following month, we began as full, paying customers. The number of children in the class fluctuated between two and three. I worked on helping the teacher reach more students, but, really, it was fine by us the way it was and the teacher never mentioned anything so we rode it out. The girls seemed to need more one-on-one interaction as they were easily distracted and seemed to work as a team to conspire against what they were supposed to be doing sometimes. It was all in good, four-year-old fun though.

They were super cute, and sometimes comical in their endeavors. Remember how I told you that Playette rolled like a triangle? That got better. In fact, everything was getting better for a while. She began to do amazingly well on the trampoline, started rocking the balance beam, followed instructions, and just seemed less afraid, overall. She was definitely the less adventurous of the twosome (read: scaredy cat), so every little bit was a huge victory in my eyes. She ran, she jumped, she had fun.

But then that stopped. I'm not sure what happened. Even I didn't want to go anymore. But I figured it was a phase for both of us and I was just tired after being at work all day and the whole human-growing portion going on.

And then I started noticing things. The instructor, an award-winning Russian gymnast who certainly knows her stuff, didn't seem to have the same rules for us as other classes. We parents were required to stay, while those in other classes were able to drop their kids off and come back when it was all done. I kinda let that slide and chalked it up to being part of the price of admission that came with the extra chromo. On one hand I understood that maybe more help was needed in keeping them on task. But then, I also couldn't help but think, "There are only two of them!"

Sometimes, we'd have other children in our class. Typically developing children whose parents maybe couldn't pick them up and they needed a ride home at the end of the night. That was fine if the kids were helpful. But sometimes they weren't and just added to the girls being distracted even further.

One evening, the teacher just up and left the class. I think this was right before Christmas and Playette may have been without her counterpart that day. I watched at the teacher went to meet the people who had entered the lobby and were obviously looking for her so that they could say hello after being away for a while. I fully expected her to offer some niceties and then explain to them that she was in a class. She didn't. She didn't even excuse herself from the room when she left. I gave her the stinkeye for what I now know was way too long and eventually she came back. I was really trying hard not to rock the boat. I didn't want to ruin this opportunity for both girls. But I am a huge customer service nut. And what she did by leaving my kid on the trampoline, leaving and coming back without ever saying a word to me about what happened? NOT COOL.

I also tried to give her an extra dose of grace by thinking that maybe what we were experiencing was some difference in cultural norms. Maybe in her eyes she wasn't being rude?

So, I sat back.

And then, when I was in TN earlier this month, BD reported back to me that one night another group of children (4) and instructors (2) were sharing the gym. He said that "our" girls were completely distracted, but the other people were only there for half of the class, so maybe it wasn't such a big deal. Maybe it was a one-time thing? Again, our instructor, the owner, said nothing.

I think it had been two weeks since the other class had been there when I showed up on Wednesday night and was met with a new group in the waiting area. I asked the other mom if these were the same people from before and she said yes. This time, though, they started at the same time we did. I made up my mind to address this with our instructor after class and let her know up-front that I needed to talk to her later. I watched to see how she would handle the girls running over to be with the other children instead of following her directions. Because they did. Several times. Also, what about when Playette would be staring at them instead of looking ahead on the balance beam? Normally, I would have helped. That night, I did nothing.

Now, I had spoken to the other mom the week before about how I had been feeling about everything. I wanted to be extra careful because, as I've mentioned, this would might them as well. My worst case scenario was that we would leave and then the other little girl would be in class alone.

After class, the teacher asked me what I wanted to talk to her about. I didn't touch any of the other issues I had, but simply asked her about whether or not the other class would be sharing the space from here on out. She said yes and then went on to tell me that she had to do that for her business and that she couldn't continue to give us "private lessons" any longer. If we went to another gym, we would be sharing space. I asked her if another gym would share that information with us up front. She said no. I reminded her that these children have special needs and appeared, at four-years-old, not to be quite ready to handle those types of distractions. Didn't she notice their lack of presence? She said no. She then told me that she was upset that I would even have this conversation with her.

SCREECH!!

Pump the brakes.

Did this woman not realize how flippin' patient I was being? Did she not appreciate my calm, even tone? Did she not see in my eyes that what I really wanted to do, instead of being the kind, professional mom, was go upside her head with a shoe?

Such is the cost of playing the nice role, huh? You get underestimated.

Back to the convo.

She had the nerve to be offended that I would approach her with such a thing?

I asked what she would rather have me do instead?

No answer.

So, if I have a concern about the class, I shouldn't come to her?

Nothing.

She then said that she was bothered that I think that she wasn't giving the children enough attention.

"Sweetie, that's guilt talking. I never said that," I thought.

The other mom then pretty much said what I was thinking in a more tactful way. She confirmed that was not what I said at all.

And then we were unceremoniously dumped.

She told me that class was now canceled. For all of us.

I asked her as of when.

She did not understand.

I asked her when this brand new decision would be effective.

She said that she would no longer offer our class in February.

I asked her when she was planning to tell us that. Was this conversation the catalyst?

She said yes.

I asked her if I had never asked the question, would this still be the case?

She said no.

(Which I believe. Before class, she had asked the other mom for the contact info of the local Ds group so that she could place an ad looking for more students.)

I looked at the other mom and apologized. I told her that I had no idea this would happen.

The instructor then told me that there was no need to apologize.

Say huh?

I told her that there was. I said that because of my confrontation and attempt to address an issue, that their daughter would miss out on class (nevermind the start-up and uniform fees!).

My brain was fried. Isn't this what grown-ups are supposed to do? Talk things through? Address and solve conflicts in a mature manner?

I took Playette's hand, told her to tell Miss M thank you and good night and then we left.

Pleasant as ever.

By the way, when I came in that night? I saw a calendar on the wall of all of the classes. None of the others classes share space. She must think I have "Yummy the Dummy" written across my forehead. Two things you don't mess with: my kid and my money. This was far from charity and I expect for us to be treated as equals.

What a nutball night.

So. Do we go back next week, y'all?
I'll have to check with BD, but I don't think we've paid for January yet. I'm guessing that we should, because that's the right thing to do, even though I don't want to. And then, if we do, I don't want to miss out on a paid-for class. It's not like I feel like tipping this lady. But I also don't want to be held liable if I go off on her next week. A shoe upside the head feels too kind now.

Influenced

Playette has been in a typical daycare or preschool environment for nearly four years now.

Our purpose in going that route was to expose her to other children, since she had no siblings at home, and get some positive influences from her typically developing peers.

For the most part, we've been pleased. She's great at playing and learning amongst other children and has plenty of friends that she asks for by name. She also has friends with varying unique needs. We're all about equal opportunity over here. One of her buddies in her class last year in CA uses a wheelchair and I loved that, to Playette, she was just one of the gang. Which is as it should be.

Many adults could stand to learn a lot from these kiddos.

Along with the great stuff, we get some gems that we know can only have come from being in school.

The latest is the evolution from "uh-oh" to "OOOOOHHHHHHH!"

It cracks me up. Let's say you drop something. She is quick to point and yell, "OOOOOHHHHHHH!"

Like she caught you do something wrong and she's about to tell or as a warning that you're about to get in big trouble.

It's funny because, really...how much trouble am I apt to be in for dropping my keys? And who is going to punish me for that offense, exactly?

I love that little nut.

=====

We just got in from vacation last night, so we're buried in washing tons of warm-weather gear while also trying to put together something that resembles Christmas morning for the kidlet.

Sure it's two days later and after 6pm.

How much you wanna bet she won't care?

More later...

Outtakes

If you liked the shots taken by Pretend Jen for our participation in the NDSS Signature Tee fundraiser, perhaps you'll enjoy these as well. If that link doesn't work for you, try this one.

Again, we had a ball and are so grateful for having had the opportunity to play for a great cause.

=====

I feel like I have so much to say in order to fill you in on what I've been so quiet about these last few many months.

I will!

But first, there is a party with free food calling my name.

I'm a sucker for free food, yo.

And, of course, the kid should have fun.

Maybe I should have written that first? That's what a better mom would have done, right?

HAHAHAHAHA! And now I'm gonna have two! Watch out, fellow MotY nominees.

What had happened was...

Remember how I was all excited last week to meet the ST that, like, totally had the potential to be my lifesaver?

And we were going to go there after a trip to the dentist?

Well...

We didn't quite get that all done in the manner I was expecting.

And now here it is seven days later and I'm just getting the breathing space to talk about it.

First, let me say this: BD was gone. Again. He had to go back to Norway for close to two weeks. I whined almost the entire time because I was EXHAUSTED and I wanted him HOME and all of the sudden none of the jars in the house would open and there were bugs that needed killing and I wanted to grill things but I don't trust myself with propane (no, really) and blah blah blah, oh pooh.

It's amazing how independent I was before I got married and now? Hmph.

Anyyyyway.

The dentist trip started out ok.

Until I got in the car.

Because that's when I realized that were weren't going where I thought we were going and now we'd surely be late because I hadn't planned on driving that far away. Ugh.

Eventually we got there. Late. And...it just wasn't my type of scene. There were these huge, unsupervised children - pre-teens? - on the play structure meant for children 4' tall and under, which of course my child wanted to play on even if that meant she would be trampled. There was yelling and screeching and...just when were they going to call us up, anyway?

The answer to that would be "five minutes from never."

We waited for over an hour. During that time, I saw a little boy finish seeing the dentist only to come out to the waiting room to no parent or guardian waiting for him. Regardless of the many signs posted NOT TO LEAVE YOUR KIDS.

Maybe one more sign would have helped.

When we finally did go back, Playette did fantastic. I was way more impressed with her performance than that of the staff. Zero patience for that crap, I have.

We happily left not knowing anymore about her mouth issues than we did when we came in and then yesterday? At this feeding specialist appointment we went to? Guess what they told us to do? GO TO THE DENTIST.

BWAHAHAHAHAHAHAHA!

Insurance is going to laugh in my face.

"Yeah, I know she just went, but now can we go see a good one?"

And that's when things started going downhill.

After the crappy trip to the crappy dentist, I mean.

Playette seemed fine at first, but then the vomiting began.

First, on the beautiful Middle Eastern rug, then on herself, on the carpet, all over me, on blankets, on towels.

It was awesome.

(Needless to say, we had to cancel ST. womp, womp)

This kid never gets sick so when it does happen, I'm totally caught off-guard. I did my best to channel my great-grandmother and just keep pressing, thinking of how she'd call me a wimp since I only had one kid to take care of, didn't have to pick cotton or tobacco, have indoor plumbing, and (gasp!) there's a machine that washes all the pukey laundry for me. I mean, really.

I figured that if I just kept moving that I'd be ok, so that's what I did.

Somehow we made it to Saturday.

Saturday, there was no puking, but the scary high fevers and lethargy started. I think we watched a lot of TV that day.

I thought everything was done on Sunday. And then Monday happened.

But! BD was home by then, so at least there was backup.

He stayed home with her on Monday and they got some good bonding time in. By the time I got home though, she had a crazy rash on her face and nose (BD: "Didn't she look like that yesterday?") and she was pulling on her ear, saying "Oweeee."

Now, this is "funny."

Nary a week before, I was telling her Ped about how my kid had never had an ear infection and she was all, "Really?!" and I was all, "Really," as I popped my imaginary MomCollar.

So to teach me a lesson, the Ped totally gave Playette an ear infection and called it a flu shot.

Totally plausible, right?

So there we were, six days later, with Rashface McGhee, pulling on her ear, and I called that Ped's office right back. "Y'all are open until 8, right?"

"Yes, but we're all booked up tonight. Please hold for the Triage Nurse."

I turned to BD and begged for him to handle it.

I don't know about your situation, but when BD deals with the Ped's office, things always get done. They are sooo nice to him, wherever we are. The same thing was true when we lived in CA.

They ended up telling him the same thing, but then an hour later, miraculously, there was a cancellation so off they went. The front desk ladies are nice and all, but they would never have called me back with that revelation. Never.

Verdict: double ear infection

Playette and BD and Amoxicillin stayed home together again on Tuesday.

Oh, and somewhere in there, the truck started smoking and scaring the crap out of me while I was driving home from work. Like a doof, I screamed while driving it all the way to our driveway, where I jumped out like it was about to blow and ran to the front door, panting and wondering if maybe I shouldn't have parked it so close to the house because it was going to up in flames any minute.

Wait. Now I remember. That was also Monday.

The truck went in the shop on Tuesday and we got a rental car.

I'm pretty sure that repairs were $8 million, but I refuse to confirm with BD because I will break out in hives.

Yesterday, I took off work to take Playette to that feeding specialist I mentioned earlier and then I had an appointment of my own in the afternoon.

To celebrate making it through all of that, yesterday afternoon, I bought totally impractical, really sparkly girly-girl shoes.


(Photos do them no justice.)

And I'm not even a girly-girl.

Ask me if I care.

S'up, Y'all?

I honestly didn’t mean to just straight disappear for the most part after the end of October, but the last couple of weeks have been some doozies in our household. There’s just a lot going on and I’ve barely had the thought to blog, let alone carved out the time to actually do so.

Work is very busy. Well, sort of. I mean, there’s lots to do and way more confusion than I would like, but…eh, it’s complicated. I’ve had to take off a couple of sick days lately. One day last week for me, one this week for Playette, and then another will be next week for Playette in the morning (She’s slated to see some fancy feeding/swallowing doctor – not a therapist. Don’t worry, I’m confused, too.) and I have an appointment of my own in the afternoon. Best bet was to take the whole day even though I know that will be one hectic day between going to the city, back home to drop her off, and back into the city again. Yeesh!

Tomorrow is a holiday for us, so yay for a day off of work, but since Playette also doesn’t have school, we’re going to try to make the most of it by squeezing in a much-needed dentist appointment (pray for me) and then, in the afternoon, I get to take her to her new SLP. She’s had two appointments so far, but since they’re at 3pm, the sitter has been taking her. I’m glad to have the opportunity to finally meet this woman who is, to me, the representation of all of my dreams of the past year finally coming true.

See, we had out eval with Sara Rosenfeld-Johnson last November, I believe, and during that process, we got connected with a Talk Tools certified SLP that we were able to see twice before we moved. Even then, we had to drive over an hour to get to her because there was just NO ONE closer and I believed with my whole heart that Talk Tools was the way to go for Playette. I liked the SLP a lot and we tried to make an adventure out of it so that the early morning drives didn’t feel so daunting. As you all may recall, we then had the audacity to MOVE at the end of December once BD returned from his deployment, so that marked the end of Speech Therapy for a very, very long while.

Which sucks.

Because what is my daughter’s greatest challenge (well, besides using scissors which is the current bane of my flipping existence)? SPEECH.

When she started school in January, she did get some time with the ST there. But then, y’know, we took her out of that awful place in April after the teacher used the R word in the IEP meeting AND the bus drivers played that precious April Fools practical joke. Such a shame to leave such sweet folks, but I digress.

So, the little bit of ST she was getting disappeared. I was so torn up at the time about what was going on between us and the school district that I didn’t pursue their services at her private preschool. Plus, I just KNEW that we’d be coming up on one of the many, many waiting lists we were on for ST…any. day. now.

Ha! So much for that. If you are the parent of a child with special needs, you have probably noticed that there are a lot of children out in the world with “speech delays.” It’s a pretty common diagnosis. So, getting in to see an SLP, especially one with experience dealing with oral motor issues, not to mention the added bonus of being familiar with or certified to utilize Talk Tools? In a very congested area? Yeah…waiting lists. Long, long, long waiting lists. I made more phone calls than I can even recall, trying to track down someone, anyone, that could work with my girl.

Thankfully, we were so grateful to have Beth come by this past summer (housecall, woot!) to help me learn how not to be so overwhelmed by the whole oral motor process. She is a wealth of information and I am inspired so much by how well her daughter, Hannah, is doing, along with her other children. I hope I can be half the mama she is one day.

To bring you up to speed on this new SLP we have, about a month ago, she called me out of the blue and said that Playette had come up on her waiting list. I was shocked. She went on to tell me that she’s Talk Tools certified. I was stunned. The issues then became dealing with insurance (gag) and the logistics - her only openings were on days/times we were otherwise obligated, plus her office was REALLY far away.

Over the course of a couple of weeks, we got it all worked out. The insurance thing made me want to stab my eyes with a spork, but eventually that was rectified. And then, this woman offered to do some shuffling and got us in not only at a time where we could make it, but also at a closer office! Where has she been all my life?! Or at least for the past 10 months?! So, once I coordinated with the sitter, we were set. Yeehaw. Get along, little doggie. Forward momentum. All that good stuff.

So far, Playette has been twice and things are going well. I’m actually excited to meet this life-saver of mine tomorrow and see what she has to say about possible next steps. As it stands, I still have a massive drooler on my hands (and, yikes, winter is approaching and wet + cold = ugh), and you know that noise I mentioned that started last year? It STILL has not made a graceful exit yet.

And if you think that over time that it would just blend into the background? You, dear reader, would be incorrect. It’s just as grating as it was the first day she started. More so, in fact. More. So.

I felt like I wanted to write more than just about this topic, but my brain is all loopy at the moment. When it comes to me, I’ll be back. Promise.

And Now, Some Words from Our Sponsor

My turn again. BD dropping in for his once a year check in. The one day of the year you have to deal with my poor English and pitiful writing skills. We’ve had one interesting year.

How time flies. This time last year I was sitting on an aircraft carrier listening to airplanes crash land on top of my head. I was off “saving the world”. It’s my job or something. My job also called for us to completely uproot ourselves and try out some new scenery to call home.

As fun and exciting as traveling around the other side of the world is, being away from the Momma and Playette always makes me sad. I know they don’t see it that way, but these 2 ladies are my world. I’ve been on deployments away from the US before, but this was the first time I had to do it since these ladies came along. It is a much different experience trying to be a husband and father from the other side of the world, with little to no internet and extreme conditions on every day. Just getting to talk to them for a few minutes every couple of days was great motivation to keep going over the entire stretch.

I was very impressed with how my wife managed to hold it all together while I was gone and then again as we moved. Having to be a single parent on random notice for weeks to months at a time is an extremely hard lifestyle that the majority of people aren’t capable of. The fact that she’s committed to doing it for the benefit of my career just shows how awesome a woman she is. I’m very lucky to have her! Love you babe!

The little one continues to grow and impress. She’s amazing to watch and an extremely cool kid to just hang with. She’s my partner in crime and every minute we hang together is just the best thing on earth.

Going away is never easy, but as they say distance makes the heart grow fonder, and that has definitely been true this year.

Every time I come home to them I realize there is nothing better than their love.

BD Signing out. See you next year peeps.

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2008
2009
2010

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Giving #47 the Side Eye

Dear Extra Chromo,

I go back and forth regarding how I feel about you. In some ways, I do believe that you help my daughter to be the very person I adore and if you were taken away, would she be that same person? If I had that choice to make, would I?

In the past, I’ve always said that I would, if I could. I don’t think that’s changed for me, really. The decision’s just more complicated by the good things that come along with this new community that I was ushered into over four years ago unaware. There are lots of wonderful things I like about that.

I love the people I’ve met, the places I’ve visited, the things I’ve learned.

I appreciate my increased level of patience and compassion. I look people that are different in the eye. I say “hello.” I understand their value in this world.

I enjoy celebrating the accomplishments of not only my child, but the children of others who also have similar unique needs because I now understand what level of determination, passion, and commitment it takes for them to reach that milestone.

And sometimes, just sometimes, I crave the fire that the fight for my daughter’s basic rights brings to my being. It makes me feel alive and purposeful.

But.

Then I think about how you stripped away the joy that others speak of when they first held their child after it was born. That “love unlike any other” feeling? I didn’t have that. I was afraid. I was sad. I was completely and utterly devastated by the unknown. You did that.

I think about how people look at my daughter and feel pity before ever giving her the chance to show who she is and what amazing things she can do. They lump her into categories reserved for what they believe to true about all people with Down syndrome. No wait: “Downs kids.” You did that.

I worry and have sleepless nights, scared of what might happen if she stays so friendly and continues to never meet a stranger. People prey on such things. You did that.

I want her to succeed academically, but then think that, if she does, and she’s fully included that she’ll only be patronized and not truly be accepted as a peer. You did that.

I can’t stand in line at a restaurant on family night without someone feeling like they have the right to come up and tell me that my child, who they have never met, “…might read one day. Just not at the level of a normal child,” all the while making sure to remind me not to keep my expectations too high because some parents are uppity like that and think their kids are higher functioning than they really are.

The features that revealed my baby’s inner struggles and opened up the door to insensitivity and presumptuousness are thanks to you.

The fear, the guilt, the pain. Sure, maybe I would feel that in some instances had my child been born like the other 690.

All parents wonder. All parents feel like they can do more. At one point or another, we think we’ve failed and are grateful for second, third, fourth and many more chances.

But some days I just have to think that it’s more for me because of you.

That’s why I don’t like you.

That’s why I’d let you go if I could.

But I can’t. I know that. And I deal. And I’m probably a lot stronger for it than I realize.

I do the best I can and I don’t dwell on the “why?” anymore.

I’ve passed the phase of trying to answer the question of “How dare you make an appearance in my life after all of the things I’ve been through?!”

I understand that we are a part of the “why not?” club.

The only criteria for membership is you.

I’m sure we’ll struggle, you and I, over the years. Many days, I’ll accept you wholeheartedly, not caring at all that you exist.

And then one day, out of the blue, you’ll sneak up on me, tapping my shoulder with an aggressive reminder of all that is different, all that is more difficult, because you exist.

I hate to give you so much attention. Really, I do. It probably makes me look weak and puts you in the position of appearing more powerful in my life than you really are.

But I’m confrontational like that. If I didn’t tell you, you’d never know.

I love my kid.

I’ve got my eye on you,

Gracious

When I was in college, there were a lot of rules. Especially the first year.

Meals during that time were quite interesting. Sit on only the edge of the chair, six inches in. Stare at the top of the plate. Request everything in a specific way. Have the menu memorized. Serve the upperclassmen. Don't speak unless you're utilizing the aforementioned request sequence.

It's been (ahem) several years and all of this seems like yesterday.

There was one other thing I remember vividly about lunches during Plebe year: grace.

Yup, the blessing of the food.

Because, in the midst of all this seriousness, we said grace.

Well, actually someone said it for us.

The Regimental Commander was quite the intimidating figure back then (as adults, we became friendly and I couldn't have been more proud when he was selected as a White House Fellow several years ago). He was tall and had a deep voice with an amazing accent that revealed his Haitian heritage.

He pretty much scared the crap out of me. But that's what he was supposed to do.

And everyday he would literally say grace. I found it hilarious. He yelled out so that every student in the dining hall could hear him, "GRACE! SEATS! Eat."

Never before had I considered saying grace as, you know, saying "grace."

I recount that story because not since then had I tittered at the blessing of food until Playette came along. She gets so much satisfaction out of it. She reaches out both hands to us (she sits at the head of the table and we're on either side), says whoknowswhat (hopefully, she's not praying that we'll choke on our Brussels sprouts) and then gives all of our connected appendages two pumps to the tune of "Ayyyy-Men."

We never know if this routine will occur before we eat or right in the midst of a mouthful.

And if that wasn't enough, she recently has acquired the habit of ceremoniously licking every finger before she reaches her hand out to be held. Usually it's on my side. Today BD got wet willied, too. It's so frickin' gross.

But I laugh every time.

Love her.

Three Things

1. Tricia was so kind as to share this video with me of Jamie Foxx and his sister, Diondra, (as well as others) at the Global Down Syndrome Foundation's Be Beautiful Be Yourself Fashion Show and fundraiser. How much would I have loved to have been there? A freakin' lot.

2. Gymnastics was slightly less awesome tonight as my child had a totally random and very rare accident of the #1 variety and then decided to top that feat moments later by spitting up some of her spaghetti dinner. At one point, she was walking around in a borrowed pull-up and a jacket because I didn't have any backup clothes because I'm cocky like that. Mom of the Year, ladies and gentlemen! Here I am. Right here.

3. Things went fine with my friend and the young man with Ds. I guess I didn't totally ruin everything, but my info didn't really end up coming into play this time. I was assured that he'd keep everything I shared in mind should the situation ever come up again. I hope you all can understand that I don't want to violate his trust by sharing any additional details. I just thought it was really cool that he asked me and found it heartwarming that all this advocacy is not always in vain.

Sometimes, it feels like I'm always talking to people that already know and understand everything I'm sharing, which is great because I totally need the support and validation, but...I also feel good knowing that people that don't have personal experience with Ds, especially people I haven't seen in many years, can get something from this as well.

Girls' Night In

BD went out to hang with some work folks tonight, so it was just me and the Littlest.

She ate spaghetti and then tossed some of it back up on the office carpet.

Good times, good times.

Thankfully, it got better after that.

There was some Dora watching and then I convinced her that a movie would be a good idea. She relented and after donning her pjs, we finally snuggled in on the couch and watched Tangled.

First magical thing of the night: She stayed awake the entire time, paid attention, and seemed to love it.

Second magical thing of the night: While walking her up to bed, she ALTERNATED HER FREAKING FEET ON THE STEPS!!! ALL THE WAY UP!!

Man, it's been a long time since we've have a bonafide big-ass milestone around here.

There's gotta be a technical term for this. Where's FNPT when I need her?

So I'm excited.

CAN YOU TELL?!?!?!?!

I don't really know how to calm down about this. I mean, I've never seen her do it. It's pretty flipping amazing. To me, at least. And that's perfectly ok.

I don't know when other kids do this kind of thing, whether they have 46 or 47 chromos, no matter.

BECAUSE MY KID.

SHE DID THIS.

TONIGHT!

All the while saying "left, right, left, right..."

Can you tell I'm proud?

I'm so stinkin' proud.

This, ladies and gentlemen, is what having a kid with Ds gets you...

Insanely happy.

Everything happens. Just in its own time.

Sunday

Another glorious day here, weather-wise. I did my best to soak some of that up because, before you know it, I'll be complaining about the cold.

Auntie left this morning and Playette was none too happy about it. She had her backpack donned and was all ready to go with her. She wouldn't even say goodbye at first. Poor chile.

Shortly thereafter, I began the Quest of Failed Self-Improvement.

BD dropped me off at the hairdresser, but I got tired of waiting, so he came back to get me before I ever got started.

Later, I decided that maybe a pedicure would make me feel better about myself. So I drove to the shop only to find it was closed.

I am still just as much of a mess as I was when I woke up this morning.

In the middle of all of that somewhere, I decided to check in on the TMR boards.

Because, you know, it's been a while.

I don't know what I expected, really. I think that I'm probably still naive enough at times to believe that, generally, people are more informed. That, regardless of whatever choice they make for themselves and their family, they're doing it with the total of the info available to us in 2011.

Just so you know...that's not the case.

I read a lot of ignorant stuff today about children, people, with Ds. Stuff that people really and truly believe. Some of which was delivered to them on a silver platter by medical professionals so it must be true.

At one point, I looked up from reading and directed my gaze three feet down the couch at my daughter.

I wanted to keep an open mind while doing so.

I wanted to see if she was, in fact, suffering and maybe in my own selfishness I hadn't noticed.

I wanted to see if the feeling of her being a burden washed over me.

I wanted to check for every serious medical issue that some of those posters affirmed would occur with every single child with Ds ever born.

And you know what?

I just didn't see it.

I did see a four-year-old girl smiling back at me, in anticipation of whatever I might say or do next.

Her white shirt was stained by the red juice she had had earlier. Her socks were just begging to be pulled off and thrown on top of the shoes she had already discarded on the living room floor. She had an excited little bounce to her, as she usually does.

She was just the way I thought she was before I had started reading.

Happy and healthy and just where she belongs.

For My Next Trick...

I've been quiet again, for good reason.

It's not that I try to be busy. Or that I'm looking to win the Craziest Life Award.

Really, I'd be ok with a little boring normalcy, trust.

So, today, I finished my second week at work. I can't really say second full week because week one got a late start due to the hurricane that came through this area and then week two started with a holiday. Add to that the fact that we got out early last Friday and I had to take off at noon today and I'm really not looking forward to the whole five-day, forty-hour work week thing.

To back up a little bit, after the earthquake and the hurricane (we evacuated for 3+ days, but our house was pretty much untouched), I started work and then BD left for Norway.

Norway.

Like, 6-hour time difference Norway.

I have been one super-tired mama.

School did start in the midst of all of that, too, but since we decided to keep Playette at her current school full-time and out of the district entirely, it truly felt like any other day. I really did think about the whole cute outfit and picture thing, but, yeah. That didn't happen. It was more like, "Pre-K! Yay! Ok, see you later."

BD got home late last night. I know this because at some point, I woke up gasping for air, in a state of fear-shock because someone was in my bedroom, and about 10 seconds later, I recognized him.

It was a long ten seconds.

I was really out of it though. I had been feeling bad for about 24 hours at that point, so I think I grunted my muted version of "Babe, I missed you soooo much! Welcome home! Muah, muah, muah!" and went back to sleep.

We talked some in the morning, but not much. I was rushing and he was getting Playette ready since he didn't have to go in to work.

That. Felt. Awesome.

Having help, I mean.

I had missed my parenting partner and dreamed of what mornings would be like with two of us to split the workload.

Anyway, I went to work, suffered through the morning, and finally realized that what was going on with my body could be classified under Not OK.

I drove myself to the urgent care down the street and by the time I got there, I was walking lopsided. When I got to the desk, I broke down in tears.

That was a very bad idea.

Because the stabbing pain in my chest then got way worse and I couldn't breathe or talk.

That's one way to skip the line.

Not that there was one, but still. I had kinda made myself top priority, regardless.

Diagnosis: Walking Pneumonia

This really hurts, yo.

I'm down for the weekend.

Let's hope that's it.

The killer irony in all of this is that I've been placed in a trailer at work for the next year during a remodel. I've been smelling an odor in there and inquired about it right away, based on my past upper-respiratory issues and all I've heard about these things being death traps. I told my boss yesterday that I wasn't meaning to be a pest right out the gate, but that it would really suck if I started getting stabby chest pain and ended up out of work for a week right away. I was poo-poo'd because, you know, Air Quality Tests cost money, and told to come back to them if I had symptoms.

That last convo I had with someone in an official capacity about the topic was this morning.

Right before I left for urgent care.

I think, come Monday, I win.

How bad, exactly, would it be to quit before I get my first check?

=====

And, before I totally forgot, another one to add to that last post: I love how Playette sings and signs songs on the radio. It's super cute. But the one that's currently slaying me is a less-pop'y tune, her old standby fave. When she gets to the third line, she signs it like "Happy Birthday deer _________."

When those two hands go up to her head? Hilarious.

Not that I can laugh right now. Or cough. Or move.

Back to sleep I go.

=====

Oh, and thank God, again, for ASL. It hurts to talk so I'm signing more. What's funny, too, is that BD had to use Playette as an interpreter this evening. I signed "hurt" and he was all, "huh? help?" so I finger spelled "H..." He says, "F?" Oh jeez.

My baby saved me.

And thennnn....

1. Ok, so she totally came home with a huge whole in the side of her brand new dress. I wasn't mad, but damn. Was she trying to ruin it just to make me look foolish?

Totally fixable and probably wouldn't even be noticeable if it were sewn by anyone other than yours truly. Me? I'll probably make a mess out of it using a hotel sewing kit.

2. Thank you so much to all who left comments on the behavior situation. It really means a lot and I find your feedback helpful. Just knowing that I'm not alone in this is huge.

That reminds me of something..."behavior" was a topic that was never addressed in the sharing session of moms of 3-5 year-olds at the NDSC conference. My biggest gripe about the weekend was that time period. We essentially spent the entire 1.5 hours introducing ourselves, which helped no one. Wouldn't it have been great if this type of thing could have been explored instead? Or any of the other 15 or so things that people said they'd like to talk about? Ugh.

I think it's important that when we have golden opportunities like that, with just us moms (not friends and therapists, like what they allowed this past time - no offense to the supporters), that we seize the chance to talk about the real stuff, the nitty-gritty, the "my special angel isn't acting like such a special angel anymore and I'm no longer feeling like such a special chosen parent to my very special kid" type stuff. (gag @ all the specialness of it all)

We all know that we all love our kids. If we didn't, chances are high that we wouldn't even be at an event like that, y'know? We probably don't need to spend the entire time telling each other that we love our kids.

Obviously, I'm frustrated. It feels so big right now that we missed it. We really missed it in that room that day.

I'm thinking of all the other moms who left that room not getting what they needed, moms with issues that might have been more hearty than my own, and it's breaking my heart.

When are they going to get their chance? Do they spend another 1, 3, 30 years feeling like they're failing?

I hope they're able to find the support they need.

Thankfully, I have you all.

3. And, uh, the weather and seismic activity around here is pissing me off because I don't know how to deal with it. Especially not all at once.

When More is More

Today, the Littlest decided that she'd spice it up a bit.

Maybe she's trying to remind me of what things will be like for me when I go back to working full-time outside of the home next week.

I pulled a new dress out of her closet this morning for her to wear. It was one of those moments where you have to weigh out the pros and cons...

Yes, if she wears this, it may get messed up during the school day.

But, if she doesn't, it may end up being one. more. thing that gets outgrown with the tags still on it.

I threw caution to the wind. We'll see how that turns out.

But here's the thing, much like the participants in any number of makeover shows, once she had that new dress on, her whole demeanor changed.

She went into her closet and grabbed her laptop.

Then she went into my closet and snagged a purse.

Partner those with her (old) glasses and she was ready to go.




I hope that I'm half as put-together on Monday.

=====

I cried at drop-off today. I couldn't help it. It was just a few tears, but I couldn't hold them in.

The teacher, who I appreciate very much, was telling me about some of the behaviors that Playette has been exhibiting lately.

Now, I had heard the other teacher mention some things yesterday during pick-up, but I think she was trying to spare my feelings a little too much and kind of acted like things weren't as bad as they are.

The morning lady (they work together in the room for most of the day) was a little more blunt. Which was fine. It's just that I guess that I've been living in a bit of a fantasy lately. I mean, I have this kid who has been just...nice...for so long and hearing that she's pushing and hitting other children? Ugh.

I understand that her chronological age does not match her developmental stage, but still. I thought we got the "terrible twos" thing last year. Apparently not. That was just a preview. She's exhibiting that sort of behavior now in the classroom and I realize that I'm not taking it well because I really, really want her to just be.

Do you know what I mean?

I don't want her to stick out (more).

I don't want her to become a problem.

I want everyone to wish that they had her in their classrooms.

It's that thing about being different already and not really wanting to give her the leeway to be the same as other children in that kind of way.

While it's fine for any other child to have behavioral issues attributed to the stage they're in, for a kid that's already set apart, it's just another strike in my mind.

It's kinda like me not being able to be relaxed in college about breaking a rule....there was no one that anyone could confuse me with as I was virtually the only Black female for most of the time I was there.

So, yeah, it's deeper than "we don't hit" for me.

It's more like, "Please, baby, be nice to your friends today, ok? Be on your very best behavior, alright? Look at me. Can you do that for mama? Please? No, really, I'm serious. Look at me. Do you understand? We're nice to our friends. Hands are not for hitting. Let's use our words today. Look at me. Tell me you understand. Ok? Can you promise me that you'll be the best girl today?"

Ugh.

That is so unfair. I know that.

But that's real life.

Goings On

You know, I seem to dip in and out of this space a lot lately, but, truthfully, it's summer. And I don't want to look back and say that we didn't live it up when we had the chance, y'know?

So we've been doing just that. And so I'm behind on my emails and phone calls and posts. But that's what winter's for, right?

Know that I won't quit you though, k? I mean, even at the times that I start to think that this blogging this doesn't really mean anything to anyone but me, I get confirmation that what I write matters to someone. Even if it's just one, it's one. And that means a lot to me. So here I am.

There's been quite the activity in the Ds community lately.

First, and most importantly, there was the NDSC Conference in San Antonio, TX, last week. I can't say enough about it. Where else can you spend 4-5 days in a resort setting and hang with a bunch of people that just get it? And then you eat, dance, laugh, cry, learn, speak, and listen. It's pretty awesome.

This was our third time attending. We went to Sacramento and Orlando and it would take something massive to keep us away from DC next July. So get your bags ready and start setting aside your allowance, y'all. It's worth it.

We didn't take a camera, but thankfully others did. I'll either share some pictures here soon or provide a link to where you can see them. Playette was quite the poser so she made it into lots of shots.

Oh! While we were there, we had the chance to go to Morgan's Wonderland and I'm so, so glad that we did. A theme park that utilizes inclusive practices? Bonus.

I loved seeing our friends and friends that have become like family. The only thing that blew was that it didn't last longer. But it gave me hope and the strength to continue to fight the good fight.

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Good thing, huh, cause in the midst of all of that warm-fuzziness, there came word of the whole The Change-Up controversy.

I've said it before and I'll say it again...just because you can be a jerk doesn't mean that you should be.

If it's "just words" then why is it so hard to make the switch? It's a matter of respect. And if you can't respect my kid, I can't respect you.

That's the nicest, most concise way I can put it.

If your friends, family members, or co-workers still don't get it, fell free to forward them this.

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And then there's this story.

Um. Well.

You may be surprised at my reaction, but I don't think he should play.

To me, that's the definition of treating him special-special.

I'm not a fan of special-special.

One thing I learned from the conference session on inclusive practices is that we can't have it both ways. We can't want for our kids to be treated just like everyone else and then not want them to be treated just like everyone else when it doesn't feel good.

Inclusion, to me, means that everyone is together and supports are provided when necessary. In my mind, it's not that we get the best of all possible outcomes at all times.

I admit, my kid is four. I have a long way to go and my thought process is certainly skewed by my limited experience in the land of Special Needs Parentdom.

I also admit that I don't always take road less traveled. Some days are hard enough as it is and I welcome a break. Any break.

So when someone offers Playette a special pass for free admission to the zoo, I will probably accept on her behalf. See? I'm not perfect. Perhaps that even makes me a little hypocritical.

But I'm not going to be mad at the zoo if we go and they don't offer Playette a free ticket. Because no one else gets free tickets. Does that make sense to anyone but me?

Help is nice, sure. But it's not a given.

So I guess if they had decided that Brett couldn't suit up, but could still do some stuff with the team (which it sounds like may now be the case), then I guess I could be convinced to be ok with that. But I don't like our kids treated like mascots. And I don't think that they should be allowed to break rules courtesy of the extra chromo.

When I was a kid and used to say, "That's not fair!" one of my parents would always reply, "Life's not fair."

Maybe that's why I'm cold-hearted. Or a realist. Or whatever.

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But back to the happy-happy-joy-joy! Washington, DC. July 20-22. Come early or stay late. Just be there.

We'd love to see you.