Friday, September 28, 2012


My mother would have been sixty years old today. That sounds so strange to me. I guess because I can't imagine it. She was always the one to seem younger than she was. She liked it that way. It pleased her for people to think we were sisters instead of mother and daughter. Everyone swore we looked just alike.

From her, I received my propensity to be loud, to make people laugh, to look for the Fun door and walk, nay bust, through it. She also taught me how to be cautious and responsible because I learned what could happen if you weren't.

She let me wear her Salt n Pepa jeans, as she called the stone washed pair with the rips and red fabric underneath, in the 8th grade, as I was struggling to fake my way into being half as cool as she was.

She taught me how to drive a stick. Lesson number one was on the Jersey Turnpike when she decided that she needed a break from driving one day. I was a nervous wreck. She was proud when I lasted an hour and told everyone what her girl had done.

She couldn't swim and made sure that I participated in Diaper Dip as a baby so that I could before I could walk. And she became my biggest cheerleader when I competed for years thereafter.

When she died, I was 18 and she was 42. She never got to be a pesky mother-in-law to BD or a doting grandmother to my children.

In the way that it is possible to miss what has never existed, I do.

And as much as a grown woman can want her mommy? I do that, too.

All the time.

Tuesday, September 25, 2012


Friday, September 21, 2012

5 years, 5 months

They were truly playing together this morning. She wanted to teach her brother all the ins and outs of the activity box. He was not totally into all of the extra loving that came along with it.

Thursday, September 20, 2012

More First World Problems

A couple of things. Not life-threatening or groundbreaking, but still.

In the pile of papers that came home with Playette yesterday was an envelope. Written on it were the words "seperate [sic] checks". I opened that envelope to find two applications I had filled out, one for joining the PTA ($8 - I really don't get the reason for that fee) and the other for a t-shirt to be used by Playette for school events ($4 - totally get that). So, since I was sending them back in at the same time and the money was going to the same organization, I wrote one check for $12.

Apparently, that was all kinds of wrong. Should I have known? Veteran parents of school-aged children, is this common? I had to spend time I didn't have this morning, writing checks number 2 and 3. I never write checks anymore. So, yeah, just wondering. Is this just how school is and I need to get over it?


Next, the IEP meeting went fine. It was just over an hour and we discussed what was needed to transition her document from one state to the next and also what was left to be completed for eligibility (another thing I don't get - why can't I just turn in her karyotype and be done forever already?).

Apparently, because my daughter is much like a soup can, she needs a label.


And the one she has, DD - Developmentally Disabled, just won't do any longer (in this state).

Can anyone explain to me what label (ugh) is most desirable and why? After all these years, I just still don't get it. My initial thought is to aim for OHI, but I should probably have a better understanding of why this is my goal before we meet again on October 17th.

Teach me, wise ones.


Oh! And just in case I made it seem the other day like there was one big Ds Yahoo Group for all, that's not quite what I meant. We've been fortunate that in the four areas we've lived since Playette was born that each support group had an online component via Yahoo Groups. So that's where I've always gone with questions about schools, doctors, and the like.

Just wanted to clear that up. What I write makes sense in my head, but clarity is not always my strong suit. If you ever are wondering what the heck I'm talking about, just ask. If you're lucky that day, I might know.

Wednesday, September 19, 2012

A Baby Story

It seems so long ago, but not really. Just over five months ago, we welcomed Baby Dez into our lives as a person we could touch and hold. He was already loved.

But how did we get there?

It's a story I've been meaning to tell for a while. Like most events in my life, it's not a straight shot to the intended destination, but, instead, it's ripe with turns and switchbacks and unexpected detours.

I've already mentioned here how it took us a while to get pregnant.In fact, we were scheduled for IUI in August (only because the July dates fell over the holiday weekend - ugh) and I was surprised by a positive blood test during a physical for the Navy Reserve at the end of July.

"Ma'am, you knew you're pregnant, right."

"Uh, no!"

After the initial shock wore off, more shock took its place. And then fear. Interspersed with joy. And then peace.

That peace lasted until about the 20 week mark. I didn't start worrying, really, until we were walking into the hospital for the ultrasound.

It was strange. After denying all prenatal testing, I was now going to allow something to take place that could possibly end up taking us down a path I didn't want. What if a marker showed up? Then what? Would I be strong enough to make it through the second half of my pregnancy weighed down by all the "what ifs"?

But I did. The baby appeared happy and healthy, developing typically.

Just as Playette had.

It was a great pregnancy. Aside from some back pain in the second trimester and that pesky walking pneumonia situation in the first trimester, I was fine fine fine.

But it was long. Like, really long. Seeing that I found out as early as one possibly could and then he was forcibly evicted at 41 weeks, 5 days gestation, we're talking LONG.

I'm getting ahead of myself though.

My plan (hahaha!) was to give birth in what is called the Midwifery Center. It's a separate wing off of Labor & Delivery, inside the hospital, that's reserved for women attempting unmedicated vaginal births. In order to deliver there, one must meet a bunch of criteria and I was happy to have made it to my due date without getting the boot.

For me, as I've mentioned before, I was attempting for an experience that would be pretty much the polar opposite to what I had with Playette. Instead of three epidurals, I was going for none. And they could also keep their pesky IV. I dreamed of a baby-led labor, something that would be brand new to me as I was induced before. Plus, the idea of a water birth sounded so enticing.

I knew it would hurt, sure, but that fell secondary to everything else in my mind.

Besides, I had a chew toy that I made myself.

I'm not kidding. Braided colored handkerchiefs.

I guess it was supposed to be more of a focal point, but I figured that no one would stop me if I decided to chew on it. And "chew toy" sounded more entertaining than "focal point."

But when it came down to it, it was declared that my happy, healthy baby was too big to be delivered in the Midwifery Center. *side-eye*

I got the boot after my due date because I was "closed, thick, and high" and he appeared to be much larger than Playette had been. The Midwifery Center was not into taking a whole lot of risk with me. They gave me five days to either schedule a c-section or go into labor. Otherwise, I would be induced at 41+4.

I went home and promptly began the following:
Chinese herbs
All fours in the tub
Rocking on a ball
Walking around the neighborhood
Walking in the mall

By Sunday, the deadline, I was slightly further along, but not much. So in I went. First was the IV. Then, the Cervidil, followed by the sleep aid, Ambien. The idea was that I would rest while my closed cervix ripened and then, hopefully, I would be at three centimeters by morning and the Pitocin would start. Or something close to that, depending on how things went.

Except I never fell asleep. I ate half of the lasagna BD had brought me and tried to focus on The Amazing Race, but I was really uncomfortable. In pain, even. Little did I know that BD was texting a friend of mine that I was sleeping at the time. Because I so was not. I gripped that bed and watched the monitors. He slept.

After a few hours, I think I must have piped up because the nurse checked me and said that I was 8cm.


"You're gonna have a baby in the next three hours, I'd say. Let me go call the midwife."

(I got to keep the midwife even though I got the boot, so that was good.)

BD then called my doula. We all thought it was go time.

I did a lot of standing and rocking around that time and then the details get a little fuzzy. At some point, I went to use the restroom and became afraid that I was losing the Cervidil (I was loopy. The Cervidil was long gone.) and tried to hold it in only to fail and realize that it was my bag of water.

So that's what that's like.

Lucky for them, no mess.

But there was meconium. Back to bed for me. I was re-checked and the baby was still as high as he could be so now there was a fear of a prolapsed cord.

Oh, good grief. I was stuck in the bed for sure now. My doula tried to help me change positions in the bed that would help facilitate Dez dropping down. I proceeded to try to break that $8000 with every surge. BD told me to breathe way too often for my taste. The doula said I was doing great, but I didn't believe her. It hurt and I wanted it to be over. It was only a matter of time, right? All I kept thinking was EIGHT CENTIMETERS --> TRANSITION --> BABY.

I could do this. Where was my chew toy? I wasn't sure. I bit BD instead.

Time passed and the next big moment came at 6am. So, yeah, I didn't have the baby by 3am.

Turns out that I went backwards. WHAAAA?!


I felt what little energy I had left leaving my body.

The midwife talked to me about an epidural. I remember being told that I could use it as a tool. I didn't want one, but I understood the logic they were presenting. There was no doubt that I was not exactly relaxing. Maybe it would help? Was I willing to try?

Feeling defeated, I said yes, thinking it would be over soon and none of this would matter. Chances are, they wouldn't screw up my epi like the other hospital had.

And they didn't. It was fine. I could feel enough to push, but I was no longer trying to dismantle the bed or BD's hand.

And that's when Dez started expressing his displeasure.

BD and I were really calm about it. We were thinking that Playette had decels for months. What was the big deal?

Apparently it was a really big deal.

Midwife entered. "Chrystal, I need you to process this quickly. Your baby is in trouble and I think the best option is to get him out of there soon via c-section. You can wait, but then it may become emergent and that's a much more serious situation."

I was done. My plan? Gone so far in the other direction. I joked internally that at least I got to try every option they offered. I could be the posterwoman for the hospital. But, really, I was sad. I resigned myself to the surgery, knowing that if I didn't go home with this baby that I would never forgive myself for making the wrong choice. I still don't know if that was the right thing to do, but that's what I did.

And thirty minutes later, Dez was born. All 9+ pounds and 22 inches of him.

I was loopy, but he was amazing and alert. They put him on my chest in the ER. I looked at him and wondered if someone would catch him if he fell. He was wonderful and I didn't want to break him.

I spent time in recovery while BD escorted Dez to all of his checks. He appeared to be perfectly healthy and came back to me with no preliminary concerns or diagnoses.

So now I know what that feels like.

Here's what he looks like closer to now. Those other pics are from Day 2.

Last month, he started cutting teeth. I've never had a baby that teethed before. Playette was so calm with hers. Dez...was not.

And these were taken yesterday.  

He rolls a lot, he smiles a lot, he lunges at my food and drinks like a panther (none for him just yet), he sleeps not nearly enough, his favorite song is "Let's Have a Kiki", he doesn't stay where I put him, he loves him some sister, adores baths, and so much more.

That's my Dez.

Monday, September 17, 2012

Following Up

I like when people put Q&As on their blogs. I'm nosy and that really simplifies things.

I tried to start that up here, but people don't really ask me anything, so it flopped. Megablogger, I am not.

But my pal, krlr, (prounounced Curlier - ok, not really) asked a question, though, so answer it, I must.

How did we find Playette's school?

Well, one thing I do happen to appreciate about Ds is the community. Ever since the girl child was born, we've been connected to one group or another. We've been to six different Buddy/Ds Awareness Walks in four different states! Some of them multiple times!

We get around.

You can see our smiling faces on posters and brochures on each coast as well as the midwest.

So, when you add in the Navy moving us around every so often, one thing we can always count on is that there will be other families wherever we'll be who also have loved ones with an extra chromo.

I google, I ask around, I sign up.

And that's how we found the current school.

I went to the Yahoo group and said something like, "Hey, I know you don't know me, but I've got this kid going to Kindergarten that I would like fully included and do you happen to know if any schools are better than others?"

A few people answered and that was that.

You see, because you can look at school ratings on the internet and all, but they're talking about the general population.

Those ratings don't tell you jack squat about the administration's attitude towards educating children with special needs.

Those ratings don't tell you about the teacher who taught a little girl a few years ago whose parents spearheaded an effort to make things better for people all over the country with cognitive disabilities, therefore putting this mom at ease about having her own kid in that class because obviously those parents wouldn't take any crap.

Those ratings don't tell you about how your kid will be one of many with Ds in the school and, therefore, the staring will be minimal and cruelty won't be tolerated.

You just don't get that from a "9" or a "10".

You get that from the community.

You get that from the other parents who know and have been fortunate to be in one place long enough to know the ins and outs and are willing to take the time to share that knowledge with a newbie.


Oh, and also? I know I screwed up by not checking my voicemail for days and all, but that was actually quick for me. I hate checking voicemail because I live in 2012 and I am spoiled. Never in a million years did I expect that teacher to still be at work, let alone returning calls, an hour after school ended on the Friday before a holiday weekend. Because y'all know I would have been O-U-T.

And that's why I know you're thrilled I'm not a teacher.


Keep asking me questions, y'all! Look how I responded all promptly and stuff! Go, me!

Side note: Why is my leetle baby all the way across the room when I put him down right next to me? He is up on his knees. And now his toes. Lord, help me.

Sunday, September 16, 2012


I get asked about how Playette is doing all the time. Which is wonderful. I'm so glad that people care!

So let me break it down so that it will forever and consistently be broke.

One of the main wait...THE main reason we live where we do is because of what we learned about the elementary school. Our desire was not only for Playette to be fully included, but for it to be done well. Because, y'know, there is a difference.

I was tired of fighting for every little thing and, chances are, we'll be moving again sooner than later, so why not take a reprieve?

The first week of school for everyone else was not so for the Kindergartners. They were provided a gradual entry schedule, which meant that we, along with Playette, went to the classroom and met the teacher on that Monday and then she went back for a full day with 1/3 of her class on the following Thursday.

I was very interested in how that Thursday would go, so I waited to hear from the teacher and...nothing. I tried not to flip out. I was almost kinda successful. Perhaps just a miscommunication?

So, on Friday morning at 7:30, after tossing and turning all night, I called the school and left a message for her.

And then I waited.

All day, I waited.

When school let out at 3:25, I sat dejected and came up with a hundred reasons why this situation was obviously not going to work out. No communication. Was my daughter doomed to be sitting in the corner alone, not learning anything all year? Or would she be the class mascot, coddled and, again, not taught one academic skill?

At about 4pm, we left the house. I was sad and needed to get out. I spent the rest of the weekend feeling like my dog had run away with my best friend. I whined to whoever would listen. I sighed. A lot.

And then on Monday, Labor Day, I checked the voicemail. Totally randomly.

The teacher had called at 4:30 on Friday. She filled me in on all the haps from Thursday. She gave me her personal cell phone number. She was totally nice and professional and everything I would have hoped. She assured us that she teaches about diversity in her classroom and that she has had children with Ds in her class every year for the past several years.

Imagine that.

Things had gone well after all. They weren't planning to kick her out (my totally ridic worst nightmare).

And then, because gradual entry is cruel, we got to do the First Day kinda all over again. First Week! And then, the following Monday, First FULL Week!

Every day, she would come home with her folder full of worksheets, showing us what she had accomplished. Sometimes they had little notes on them, saying something was done "HOH" or hand-over-hand (meaning Playette was guided while writing) or by herself (yay!) via the term "IND" or independently.

On the first Tuesday, when I went to Back to School Night (and brought the teacher something small and thoughtful so that I could restore a semi-decent spot in the universe), I was told that Playette was disciplined for something or other and had been required to move her clothespin from green to yellow. I guessed that she didn't like that and I was correct.

No coddling: Check.

Since then, we have worked through numbers and sight words and writing and library books and lunch making and bus riding and and and...

It's an adjustment for us all, really.

With the new routine, I get to see both of my children lay in Playette's bed at night, happily and expectantly looking forward to being read a story. I'm kinda in love with that part of the day. They fidget and laugh and play and sometimes I fuss about stopping if she doesn't stop or follow along or get off of him already, but I never do.

She enjoys school and they enjoy each other and that's the best scenario for me.

Now, I had planned to share these photos, including some of Playette's classwork from that first week, but now I'm all nervous. Vulnerable. I was so proud and still am, but I also know that this is not typical five-year-old performance. I have to keep reminding myself that it doesn't have to be. She has every right to go to her neighborhood school and have access to the general education curriculum. She doesn't have to do it all the same way as her peers.

I have to repeat this over and over to myself.

I'm a work in progress, y'all.

Because, honestly, I think she's doing FANTASTIC. She is working to her own full potential and doing more than I even realized she could. And if she were given some of this work again today, I know she'd do even better. She's progressing.

Hooray for teachers and aides and special educators and therapists and volunteers and peer models and administrators and parents like us who truly give a damn.

It takes a village, y'all.

IEP meeting this Wednesday. Am I too relaxed? Maybe. But I'll take it.

Of course there are things that need to be honed and chatted about and fretted over and negotiated and I'm sure to show my Inner Crazy Lady again soon enough, but not today. And not tomorrow either (well, only because tomorrow is a holiday). Instead, I will take that time to worry about the fifty-eleven other things that are rolling around in my brain.

Monday, September 10, 2012

While You Wait...

I swear that I'm going to post about school. SWEAR!

It's just that it'll probably be a dooz and I need some time. Which is kinda rare around here these days.

And no, it won't be like my past promises of posting about things and not ever doing it. I can tell by all of the pics on my camera that never made it to the blog that I've done that more than a couple of times.

But that's what 31 for 21 is for, right? I get to catch up in October!

Not about school though. That will be this week. Promise. are a couple of things that have made me smile lately:


Scene: This morning in the hallway. Playette is with Dez as he plays in the bouncy seat while I brush my teeth.

Playette: AAAAAAHHHH! OUCH! No, Dez. Not! Nice!
Me: What happened?
Playette: Dez bit my hand.
Me: Well did you have it in his mouth?
Playette: Yes.
Me: Don't do that.
Playette: Ok.

See? Parenting is soooo easy!


Scene: In the bathroom with Playette, waiting for her to finish up.

Side note: She randomly busts out into singing this song. Pretty much all summer. She loves pop music. It's not my doing, I swear. But it does kinda balance out her addiction to the Fresh Beat Band.

Playette: Party and bull and party and bull.
Me: Oh, you're singing your song? Party and bull?
Playette: Nooo, mama. (starts making gestures, signing potty, pointing to her butt, and then making fists and pulling them apart). Potty. Pull.
Me: Wha? Noooo, it's Party Bull, not Potty Pull. (I can't believe we're having this conversation. And on the toilet, no less.)
Me: Do you understand?
Playette: Yes. (inward eyeroll)

And it's been Potty Pull ever since. Shows how much she listens to me.