Mom's OverNight Out Recap

So, there was a time, about a year ago, that I wanted to host a Ds'elebration. Remember that? Well, it did happen and it was a great time.

From that event sparked an interest to do something just for the moms. And when Wellsphere came along and offered $150 towards to cost of hosting events for health bloggers, I submitted a proposal right away. This was my chance to make it bigger and better!

Excerpt from the proposal:

Title of Proposal: Mom's OverNight Out

Now, describe your proposal a little more. Please don't forget to describe:

a) The purpose. Tell us what you are looking to achieve.

When I discovered my daughter's diagnosis after she was born, I was devastated. I didn't know what to do or where to turn. What I've since realized, over the past two years, is that the support of other parents is invaluable. Not only do I know that I am not alone, but I can get questions answered, express my feelings to people that understand, learn about opportunities to help my daughter reach her fullest potential, and share her successes with those that will gladly celebrate with me. In that regard, I am very interested in hosting a Mom's OverNight Out at my home.

All moms need a break, but moms of kids with special needs often need respite so that we can be recharged and empowered to be the advocates that our children need daily. I think it would be fantastic if Wellsphere could support this endeavor to help make this night extra special for a wonderful group of women.

b) The people. Tell us who you plan to share the event with.

I would like to bring approximately 30 women together (all mothers of children with Down syndrome) in my local and extended Down syndrome support network and have a time that is just for us. We can discuss our kids, pick each other's brains, and also just relax knowing that we're all among friends who "get it." A fantastic Mom's Night Out!

c) The location. Where are you having this event?

It will be hosted at my home

Tell us about the angle: What makes this event unique?

While there are virtual support groups that exist and allow parents to share information via the internet, due to the sometimes very-scheduled lives of families with someone with special needs, getting together in person can prove difficult. When it does happen, there always seems to never be enough time to chat about the various things we have in common. This would be an opportunity for our support group to have time for just the mothers alone where there is essentially no time limit. We can support each other in a way that just hasn't been done before.

=====

On September 19th, it all came together. As the time approached, I had the thought to expand the group to include mothers of children with diagnoses other than Ds as well. I'm glad I did because we were able to be joined by some more really great people!

There was a TON of food, a wide array of drinks, and even more laughs and conversation. While some people did have to get home that night, a good number of us were able to remain and have a good, old-fashioned sleepover. Playette and BD were gone for the night so we, honest-to-goodness, had the house to ourselves and we could stay up because we wanted to and sleep in until we were good and ready to do otherwise.

Awesome.

Aside from armloads of cakes, pies, muffins, and other assorted pastry items, many of the ladies were able to go home with souvenirs of the gift card variety (from Victoria's Secret, Cold Stone, Target, Bath & Body Works, and Starbucks) to remind them of the time we had together and also to encourage them to do something for them and them alone. (Moms tend to forget that "just for us" stuff sometimes.)

Thanks to our esteemed photog friend and fellow mama, Jen, we have some pics to share of the event.
I like to call this one..."Oops. I guess I don't know how to use that rabbit wine opener thingee after all."

Mothers of kids with differing abilities are nothing if not resourceful. Believe that.



Wait. That didn't work? Hm. How about this?


New bottle, you say? We can accommodate.


That one wasn't my fault. I swear!


Off to cause destruction elsewhere and banned from the wine pouring duties I got to mixing up some Electric Lemonade...


...while our esteemed photog opted for a different libation.


In the end, we all came together and gave a salute to our less-traveled paths that brought us together to celebrate as moms.


I thank everyone that contributed the time, energy, and resources to help make this event a reality and a success.

O-Dogette

Confused? Hint: It's all about the hair.

Killing Me Softly with the Shoulder Action

Sunday morning with the Smith-Smiths.



Gems, aside from the dancing of course: She signs and says the word "music" at the beginning (using the microphone instead of her hand); you can hear her say "all done" at the end.

Book

Ultimate Multi-tasking

To set the scene, I stayed home with Playette on Monday and Tuesday since she was feeling under the weather. She took up about 99.8% of my attention and, in case you didn't know, it is physically impossible [insert eyeroll here] for her to nap at home.

Combining that with the facts that my husband slept on a friend's couch Saturday night so that I could host my Mom's OverNight Out party with me never really cleaning up all the way from said party and then hanging out with my visiting friend all day Sunday and Monday being a complete wash and...well, it was a leetle tense in the Crappy Little House Behind Costco (CLHBC).

Since we weren't communicating on the highest of levels, BD was a no-show when it was time for me to head to my, ahem, Well Woman Exam yesterday afternoon.

Yes, that exam.

So, what to do?

I figured it was good practice for when it's eventually time for BD to deploy. Single mamas make it happen on the daily. "I can do this," I thought, "How, exactly, I don't know, but I can and I will."

I woke Playette up from from her nap in the highchair and we piled up in the car and went. I was embarrassed and sweaty when we arrived, because I just knew that they were going to look at me crazy and send me right back home. It just felt all kinds of wrong.

The nurse assured me that they'd help me out and gave me a cup to fill.

While I attempted a clean catch, Playette practiced flushing the toilet. A lot.

Thankfully, we got out of there without causing a plumbing incident.

Then, my sweet angel child decided to rip up my paper gown before I could get it on and then go through the trash, amongst other things.

Whee, fun!

Wait. That smell? Crap.

While changing her there seemed so non-sterile, I couldn't possibly imagine someone else (you know, when they came to help) discovering my daughter with a filth flarn filthy diaper. I cleared it with the doc and went to work.

More sweating.

Where's the help they promised me?

By the time the doctor and nurse came in, I was a sweaty mess and I saw no purpose at all to me attempting to wear a paper gown because really? Pointless.

Doc tried to start with a breast exam, but Playette decided that she needed to protect me. Now, in all the months I spent pumping, she showed zero interest, but yesterday? Ugh.

The real fun came when it was time to slide down the table.

And, I swear, if you recognize what I've been talking about, then you shouldn't be offended by this. And if you are completely confused, consider yourself lucky and I promise you won't miss anything if you skip the rest of this post. Come back tomorrow when I post a cute pic or something.

Normally, I try to distract myself at this point, but here I am with a toddler on my belly and she needs distracting.

So, again, what to do?

First, I sang the "Five Little Ducks" song, forgetting that when I get to the "little ducks came waddling back" part that Playette always waddles right along to the beat.

Un. Comfortable.

Nurse: Ha! Look, she's waddling!
Me: ACK!

Next up was "Itsy Bitsy Spider" complete with hand movements. That went much better.

You know, relatively speaking and all.

I was so sweaty, but I didn't have time to be embarrassed. Well, more embarrassed.

The doctor gave Playette a sticker at the end. Apparently, she did great. And as much as I couldn't imagine it at the time, I'm apparently not the first person, nor will I be the last, that they've had in this predicament.

Playette already had a sticker from her earlier appointment so I proudly displayed those Disney princess fairy things on my chest.

I earned them.

Introduction a la Playette

Recycle bin?
Meet cell phone.

With a two-year-old in the house, nothing is safe.

Recovery

I'm still around, just trying to get back on track after a long weekend. Of course I'll be sharing about it when I get some time, but for now...bullets.

• My good friend, RJ, came to visit from the Netherlands. What a well-needed time that was! She introduced me to BD about 4+ years ago and now look at us. I am so grateful for her friendship and mad matchmaking skillz. She met Playette for the very first time and they really enjoyed one another.
  
  
• I hosted a Mom's OverNight Out and was glad to have ladies from both the Ds support group in which I participate and the Easter Seals group that includes parents of kids with varying diagnoses. We had a great time and I am so grateful to Wellsphere for their grant that allowed for little extras that helped make the event a success.
  
  
• Playette is sick. Ugh. She's doing better today than she was yesterday, but still quite under the weather. That cough! It sounds downright painful.
  

After indulging in cake(s) and cookies and breads and dips and pasta and biscuits with gravy and my fair share of Electric Lemonade and much, much more, I can only hope that I can survive tonight's torture kickboxing class.

If I don't post tomorrow, you'll know why.

Flashback Friday: Fall Family Fotos

2008


2009

Thanks again to Sara Atkins for all of our beautiful pictures! We will treasure them forever.

More Visiting

Over Labor Day weekend, we decided to up and get away for a little while so we headed down to San Luis Obispo.

Playette was so ready to go somewhere new.


We stayed at a hotel near the natural hot water mineral springs. In some rooms, they even pipe that water through to a spa on your back porch. You know we opted for that, right?




A few miles down the road is the cutest beach, complete with a really nice playground for the kiddos.


There are actually swings right on the sand too. It wasn't too crowded for a holiday weekend and it was warmer than home so I was loving it.

Mama's Little Poser
Playette enjoyed sitting on the blanket and eating snacks (her new favorite), which was great because it gave BD and I the opportunity to relax for a bit.




What I didn't notice at first, though, was that she was dipping the veggie straws before she ate them.

First, how horrible is it that she thinks every food needs to be dipped in something?

And, second, wha? Dipping?!

Caught, sand-handed.
Another great thing about being down there was that it gave us the opportunity to spend some time with another family. I mentioned in my post about the NDSC Conference (I swear, I'll finish up my thoughts on that sometime soon) that we had lunch with a lady (and her husband) that I met via this blog. We've kept in touch via email and phone for months and I was looking forward to finally meeting their children. As it turns out, they live not too far away from where we were and were kind enough to drive up and meet us on Sunday.

We ended up meeting back at Avila Beach, where we let the kids play. After a while, we packed up and went into town for lunch.

We were quite the crew, but CPK was glad to accomodate us. Did you know that they give out Goldfish for the kiddos? I had no idea. Does every place do that? I'll have to file that away for later because there's nothing like a quick, familiar snack to tame a hungry little one while you're waiting for the food to come.

Here's a group shot, minus the camera shy dads. From left to right, there's me cheesin', then N, B, Mama A, K, J, and Playette giving me the "I am not claiming you" look. Aren't their girls gorgeous?!


After we ate, we walked over to the mission plaza, before stopping for ice cream, an empty cone (K didn't know what she was missing!), and a chocolate/M&M covered marshmallow. I called myself being good by not indulging and then totally stopped for gelato on the way home. Boo.

Before we said our goodbyes, we tried for another group shot. I love this one because it's just so totally random with everyone looking in different directions and little B trying to hide while K plots to rip out my earring again, some more. (I was ready for her though. Playette does the same thing so I've pretty much resorted to wearing what are essentially break-away hoops.)


I hope that we'll all be able to get together again soon. Playette loves being around other kids. I tried to convince BD that four really isn't that many children, really, and it sure does appear to keep things interesting, but, well, he's not hearing it.

Wimp.

Visiting

I've talked about Playette and her first experience flying a kite, but I'd like to share some other photos from that day as well.

Though us mamas have chatted online for years now, the girls were just getting to know one another. They played on the beach, ate snacks, and bonded in their two-year-old way.

There's something about this picture that I really like.


Playette enjoying the sand. She's not very sure of her footing when she stands in it and tends to get a little nervous. Also, more often than I would prefer, it goes right into her mouth. She's still all about the exploring of things that way.


Sharing


Mamas with the girls.
(I look like I just rolled out the bed. Yeesh.)


I'll share about another visit with friends tomorrow...

A Box of Awesome

Pretty unassuming, eh?

It was waiting for me when I got home from the Parent Support Group meeting last night.

Aw, yeah.

When I opened it up, I couldn't help but think of Marsellus Wallace's briefcase. It was that good.



I wish I could show you the contents' golden glow. Trust me, it's there.

So, remember a few weeks ago when I was walking the streets, looking for the perfect straw cup and then that lady promised to send me some?

By now, I'm sure you realize that she actually came through.

THANK YOU, SAINT STRANGER LADY!


There are 10 assorted, well-traveled cups. (The box came from Canada.)

I looked over each one, hardly recognizing the names of the restaurants for which they were created.

This one though? This one here is my favorite.

Retail Therapy

We've got all those other therapies going on, might as well add another.

Because, really, it's about that time.

Check out Playette napping.


Closer...



Advice for how to handle itty-bitty waists with relatively long legs is greatly appreciated.

Oh, and about that eye...

Yeah, that's the "over eye injury" I mentioned last week.

Ugly, huh? And that picture was taken about 30 or so hours after it happened.

Playette is usually pretty good about getting herself down from places. FNPT taught her to turn around, butt first, and crawl backwards down stairs.

She uses that same logic with our bed. She turns around, butt first, dangles, and drops the remaining few inches.

Well, unless she changes her mind mid-dangle.

She does that sometimes.

And, typically, all that means is that she lands on her bottom.

Not this time.

This time, somehow, her head went forward and she knocked it into the side of the bed frame on the way down. It was horrible to watch. I never thought that would happen. Playette gives off this air of invincibility - she falls, she gets back up - and we're never, until now, had a real injury with her.

So, yeah, she was upset and so were we.

You'd never know it now though. She's as good as new.

Let's Go Fly a Kite

When I was pregnant with Playette, I belonged to an online forum especially for pregnant women and then joined a group of first-timers due in June 2007 like myself.

That was almost three years ago. To this day, many of those women remain in touch on a daily basis, some even after having their second child.

After Playette was born, I found it hard to stick around and hear about what the 46ers (as in number of chromosomes) were up to while Playette continued to do things in her own time. Then there was also the thing with not wanting to sound all woe-is-me whenever I talked about what was going on with us. I didn't want to make anyone uncomfortable and, let's face it, for many women who are planning to have (more) babies, Ds is a very scary topic. That's not to point out anyone in particular, but if I think back to my pregnancy, I know that "Down syndrome" was always heard in this booming voice in my head, like the worst possible thing that could ever, ever happen.

We all know that's crap, right?

How come I start to post about kites and end up on my soapbox?

This is my life, y'all.

I swear I talk about other things at parties.

And come to think of it, my Ds Awareness magnet isn't even on my car anymore (BD + car wash = no more magnet). If you know where I can get another one cheap, holla at me.

So. Back to the group.

I've met several of the women in my travels. Surprised? Probably not.

And I consider them friends.

So when one mama came with her family to my 'hood, well, we just had to spend some time.

We met them at the beach and below you can see Playette having her first experience with a kite. So cute.







It's great being around other parents sometimes because you can get new ideas. It never crossed my mind to try this with Playette, but now that I know she enjoys it, we have something else to add to our "Things We Can Do" list.

And you know what else? I just liked seeing our kids play together. Sure, her daughter was a few inches taller, but WHO CARES. I don't. Not that day, I didn't. Or today either.

I like days like this.

I like exhaling.

One Little Monkey

Ouch!



Thankfully, it's healing quite nicely.

The Culprit

After forcing the daycare to peruse photos of our child's excrement, we now know the origin of NotLarvae.

It's been banned from the classroom since some kids ate it and others preferred to shove it up their noses.

So much for a cool art project.

Ok, now it's funny.

Wonky

That's my kid.

BD took her to the Ped's office this morning.

I gave him the following list of things to discuss:

• Red, itchy eyes (is it pink eye?)
  
• Over-eye injury (I swear it took me two full minutes to come up with a word other than "boo-boo")
  
• Rash on face
  
• Low grade fever (per the daycare yesterday)
  
• Random bouts of non-walking (yes, again)
  
• Strange poop with stuff in it (ick, little green styrofoam-ish pellets. What was that?)

Ped's answers:

1. Not pink eye. More like allergies.

2. Good luck keeping a bandaid on it. Keep it clean with soap and water and stop letting your kid dangle off the bed.

3. Looks like eczema. Keep it moisturized.

4. That wasn't a real fever.

5. Keep an eye on her. If it continues or if she seems like she's in pain, bring her back.

6. It's nothing, otherwise she would have been sick and her body would be trying to get rid of it via diarrhea, vomit, or whatever. (So that's a "no" on the larvae then?)

#6 reminds me of this show I saw the other day about kids swallowing weird stuff called "Your Kid Ate What?". In the episode I saw, somehow this little boy swallowed a battery and it got all corroded in his intestine and the doctors ended up getting it out my putting a string thingee down his throat, looping around the battery, and pulling it out.

Ew.

I am so not ready for that kind of thing.

Please tell me that every kid doesn't try to shove metal objects down their throat.

Grubbin'

Last Saturday, BD took off to the Big City to see a baseball game with his friends so Playette and I took that opportunity to spend some time with FNPT. She's become a very good friend to us and I'm so glad for that. In the midst of all the crappy stuff going on with services, especially in CA, at one time or another, it's nice to have someone consistent and competent that cares for our Littlest involved in her development.

So our plan was to go to this café that has a great view of the water, but I seem to have bad luck with this place in that it's always closed when I go. This time was no exception.

After a little bit of chatting about our options, we decided to try out a place we had both heard about that serves a combination of Thai and Hawaiian food.

Playette fell in love with kalua pig when were were on vacation not long ago, so I was hoping that they'd have some and that she'd eat becauseI'mtiredofforcinghertoeatalready.

Ahem.

We were successful in our quest, which was amazing. Everyone enjoyed their food, Playette included.


Yes, she still has just four teeth.




In case you were wondering what it looked like all chewed up.

Of Heroes and Beauty

If you're not the parent of a child with any type of difference that places them in the category of having what some deem "special needs" then you might actually think that those parents are doing something more than what you would do under the same circumstances.

Maybe you think you wouldn't be able to handle it.

Emotionally.

Physically.

Financially.

When the truth is, really? You do what you gotta do.

And that doesn't make you a hero. Or a martyr. Or anyone that deserves pity or accolades.

That makes you a loving parent.

You get up in the morning and you do what you gotta do.

If that means making a different breakfast for each of your picky kids? You do it. (Maybe.)

If that means Speech Therapy, you do it. (If you want.)

What there's no question about, though, is that the things you do for your kid(s) are so much more like what any other parent would do than people may think.

All that leads up to my participation in the Littlest Heroes Project.

When Sonia first told me about it back in January, I was elated. I love, love, love pictures and we qualified, so why not?

Well. When the time came to meet up with our photographer, I started to get these conflicting emotions.

What happened to our family not being all special-special? What happened to Playette being more like other kids her age than different? Plus she's not dealing with any serious illnesses of which I'm aware.

I try so hard any other time to say that an extra chromosome is just that and nothing more. I beg people not to treat my daughter differently or special. Leave that to us.

So why should she get this great gift?

I mean, because it is.

It's a huge gift.

And the answer is?

I don't know.

Really, I don't.

When I'm being 100% honest, I say to myself, "Well, maybe it is harder? But how do I know? I have one kid and she has 47. If I had a kid with 46, maybe I'd spend the time I spend on therapy worrying or wishing or hoping about something else. Or maybe not."

The reality is that I'll never know. And if I spend my life comparing what I have to what never was, well, really, where is that going to get me?

I don't even know if I'm making sense.

I've said it before and I'll say it again, I don't have all the answers.

No matter how much it seems like I know what I'm talking about one day.

Chances are, I'll change my mind.

Or maybe I won't.

I'm human.

Not a hero.

Aside from all of that, the actual photo shoot was amazing.

It was about 8 months in the making. First, I wanted to wait until Playette was two, hoping that she'd be walking by then. Then, schedules had to be coordinated. Summers are a busy time for both families and photographers. And who can forget when Miss Thang decided to stop walking. Yeah, we had to reschedule when that happened.

But then the day came. And it was great. Our photographer, Sara, was amazing. She was sweet and patient and the kind of person that you hug when you first meet her. She took some pictures in our house while the Littlest was playing and then we headed out to the beach. It was a gray Sunday morning, but Sara assured us that this was perfect weather.

After staying there for a while, we went over to the park, did a quick change in the car, and let Playette enjoy the swings, slide, and train.

You can check out some of the beautiful images here.

We highly recommend Sara and are grateful to both her and the Littlest Heroes Project for helping to make a dream of mine come true. I've been wanting to take family pictures forever and we just never could seem to get around to making it happen. We are so grateful.

Flourishing

Sorry that I haven't been actually writing much lately. For those of you that also blog, you're probably familiar with the term "in drafts." I have lots of posts in drafts. Started, but not completed.

So, if you're looking for more info on the Ds conference or how we met some more formerly-online-only friends or want to hear about when Playette flew her first kite or need to know what just what "Thaiwaiian" is exactly or want to hear the details of the party that just won't plan itself or want to know my thoughts on the ideas presented in the 600+-page megabook, Disability is Natural or are looking forward to seeing our first professional family photos or are curious what orange highlighters, of all things, have to do with success at all?

Stay tuned. It's all coming. Promise.

Today though? Today, I'd like to introduce you to the Flourish Network.

It's a web site. It's a community. It's an idea come to life.

"The mission of Flourish Network is to improve the lives of children with special needs by helping parents become connected, informed, and poised to advocate for an environment that is fully inclusive and supportive of their children."

I met the founder of Flourish, Kori Shaw, at the NDSC conference. While she's a mom, like me, her children just happen to lack an extra 21st chromosome. Yet, she was just about everywhere I was at the conference. She came to lunch with the bloggers, she set up a booth in the exhibit hall. I saw her interviewing families, taking pictures, learning. This is a woman on a mission, y'all.

As you have time, please click on over to the site. The more people that know about it, the stronger the community can become.

Kori sent me a very nice email this morning, letting me know that she had posted a profile based on our interaction at the conference on the Flourish Network site. I had forgotten, until then, that one of those families that she had been taking pictures of was mine!

Check us out.