Par-tay!

My Best Shot Monday

BubTar celebrated his SIXTH birthday this weekend, although his real birthday is not until tomorrow. We opted for the park rather than Chuck E. Cheese and it could not have gone more smoothly. It was a perfect day and the kids were free to run and play and the adults actually were able to have conversations! Shocking!

The birthday boy got enough building toys to keep him to keep him busy for six months or so I thought, but he proved me wrong by building all SEVEN Bionicles within the first 24 hours of their arrival. It was like he wasn't even here yesterday outside of the fact that he arrived at the table for meals and periodically called for help with snapping in some of the more difficult pieces. He's still got 2 boxes of Indiana Jones Lego sets, one big tub of Lego pieces and various building plans, a big tub of K'Nex, and a junior Erector set. I think he's hit building set Nirvana. The funny thing is, he's really just discovered this love of building. He was always the type of kid who didn't enjoy toys at all. He had plenty, but none of them saw any action until KayTar came along. She's big into play. Just since Christmas he has discovered that building is something he can do and do well, which is why I think he enjoys it so much. He's a bit of a perfectionist, so sitting down with a formless pile of bricks and an instruction book sets him up for success and he just loves it. He could do it all day and on days like yesterday he does! He also got some clothes (yes, from BORING mom and dad), some really cool books (click on that last link, it is what Julie's little P's picked out for him and might be the coolest book EVER, we've all had fun with it) and a couple gift cards, too. It was an embarrassment of riches to say the least.

We also had family come in from out of town for the party and spend the weekend with us, which why I have been gone from the Blogosphere. Secret blogging and all that. After the party on Saturday, we came home, unloaded the car, let KayTar take a tiny nap (and wake up on the WRONG side of the couch), and went over to my parent's house for swimming and dinner. It was EXHAUSTING. And then at 11pm when I was taking my shower I remembered I had an English quiz due before midnight and I almost cried, because all I wanted to do was pull on my jammies and fall into bed. Sigh. But, I made a 90 so it's all good, I suppose. I think I would have gotten a 100 if my eyes weren't bleeding from being so tired. ;) And that's what I did on my summer vacation this weekend.













The birthday boy says since he already celebrated his sixth birthday, on Tuesday he'll be turning seven. Riiiiiight. Gotta love that logic, though.

PS: Thanks for all the supportive comments on the last post. I'm so nervous I almost want to puke every time I think about it, but it is important and exciting and all the support calms my poor little nervous tummy. So, thanks a million.

I think Ghandi might have been onto something.

"Be the change you want to see in the world."
-Mahatma Ghandi

Would you like to hear something that is equal parts terror and excitement?

I've been asked to speak at a press conference at our State Capitol on the 29th.

And I said YES.

I'm terrified of public speaking, just thinking about it makes my stomach drop outside of my body and starts the room spinning. So why am I doing this?

"You may never know what results come of your action, but if you do nothing there will be no result"
-Mahatma Ghandi
Because I can. Because I should. Because I want to.

We aren't the only family in this situation. We aren't the only family who has fallen through the cracks, not the only family that sits right above the SCHIP income level with no other options, not the only family who has been denied coverage because of the bottom line. This terrible thing that has happened to our family is, unfortunately, not unique to us. Out of the 1.5 million uninsured children in our state alone, 487,000 of these children are above the SCHIP income guideline.

Do you know how much it costs our state to insure a child?

$40 per month.

Do you know the average cost for private family insurance in our state?

$900 per month. And in many cases, that $900 insurance does not even provide comprehensive coverage.

Is there something wrong with this?

Yes, of course there is.

Sadly, this situation is not unique to us, this specific problem affects 487,000 people in our state; however, the opportunity I have to bring attention to it is unique to us, to me, and it has the ability to affect change not only for our family, but for the 487,000 just like us. I have a story and a voice and an opportunity to use that voice, and I can't pass that up. I won't pass that up.

"The difference between what we do and what we are capable of doing would suffice to solve most of the world's problems" -Mahatma Ghandi
It's time to be the change.



Cross posted at MOMocrats.

Wordless Wednesday: Scary sense of fashion

(she calls the costume her "boob suit" because of the built-in pecs. no joke. as in, "where's my boobs, mom? need my boobs! my incredible boob suit!" crazy kiddo. and the skull is a case for her brother's pirate mega blocks. creepy, though, right? she growls at me from behind it and says, "i scared you me!" and dissolves into giggles. oh, and when i type in lowercase italics inside of parentheses, it totally doesn't count against the whole "wordless" thing.)

For more (actually) Wordless Wednesdays, click on over.

Unofficially.

Last Friday, we had the final portion of KayTar's autism evaluation. No really, the LAST portion. For real this time. I secretly think they want to adopt her as their mascot and that is why we keep getting called back. Afterwards, I asked if there was anything they could tell me before the reports were finalized. I haven't asked this before. I'm content to let them do their job, draw their own conclusions without my questioning and interference, but since it was the last time I'd see them before her ARD, I thought I might as well see what I could find out.

They said, unofficially of course, that they are not pursuing an ASD diagnosis for KayTar. Although she clearly exhibits a number of autistic behaviors, they are secondary to the overall neurological picture and until the neurological problems are diagnosed, they are reluctant to give her an ASD label. I completely agree with this reasoning, however, an ASD diagnosis would have been helpful in facilitating appropriate services. Bummer.

The SLP said that although she has significant speech delays, they are not the sort that are easily captured on the results of the diagnostic tests. She said KayTar is consistently testing at or above age level, which is wonderful, except that everyone agrees that there are significant speech problems and she needs therapy. It is just incredibly difficult to show this in black and white on a standardized evaluation form. KayTar's language delays are largely in pragmatics. I think the SLP might even be pursuing a diagnosis of Semantic-Pragmatic Disorder which is related to hyperlexia, SURPRISE! So, she is attempting to work this angle and use it to get KayTar the services she NEEDS, but nothing is for sure because KayTar's problems exist in a gray area, as always. You just can't put her into a nice little diagnostic box and the system thrives on tidy little boxes.

The problem is, KayTar doesn't ONLY need speech therapy. She needs occupational (for her sensory and feeding problems) and physical (for her tone and gait issues). I'm worried that she isn't going to be getting what she needs. Because the evaluation team is so thorough and have identified what she needs, they are really trying to manipulate the system so that it can help her, regardless of her out of the box status. There is something called an OHI (other health impaired) they are pursuing to help her qualify for services and appropriate placement. They sent the form to her neurologist who put "developmentally delayed" and sent it back, because for fear of the dreaded threat of "pre-existing conditions" and ridiculous insurance situation everyone has been told not to write anything specific on her paperwork. So in this situation, it was a terrible catch-22 that would have left her without services OR insurance. Dude. But I took the form to the pediatrician last week and I think that the information she gave will be adequate for the OHI. I hope.

So the bottom line is the story of our lives really. No one knows what's going on with our little dear. The fact that she has no diagnosis isn't just an inconvenience, it might just keep her from getting services that everyone agrees that she needs. She's an anomaly. She's brilliant. She's delayed. She's above age level. She's below age level. She can read from my textbooks. She can't relate simple experiences to me. We just don't know. Almost two years from the start of this and endless rounds of testing later, and we just don't know. I'd like to say it doesn't matter, that after this summer's debacle of having our hopes raised (I can't even look at that post without my stomach turning inside out) and dashed we had given up on ever discovering what the larger picture is for our sweet girl, and maybe we have. But I still think of it. Dream of it. Imagine what it might be like to know, really know. But I no longer expect it. She is who she is and I couldn't be more pleased with that, but the questions without answers circle in my mind sometimes. Who will she be in a year? In five? In ten? Will she continue to thrive? Will school be too hard for her? Are there more surprised up ahead? We just don't know. We know her, who she is today, who she was yesterday, and really, that is enough for us...but sometimes, times like this, I just wish we knew a little extra.

Last night, Josh and I were lying in bed watching Mystery Diagnosis. The woman had been to doctor after doctor and been told everything was fine, that the debilitating pain and lethargy was psychological, and finally they discovered she had Hashimoto's Thyroiditis. I said, "I hope she wrote letters to all those doctors and told them what they dismissed so carelessly." And Josh said, sarcastically, "Oh, like you did to IdiotPediatrician?" and I said, "If we ever get a diagnosis, I will. We'll be on this show and I'll send him a letter saying 'Please watch Mystery Diagnosis on such and such date, you'll be the idiot doctor I talk about in the beginning. Enjoy.'"

One day, I really hope I get to send that letter.

Ahh, memories.

It's a DOUBLE ear infection. Poor little dude.

Last night was a flashback to BubTar's baby days. Although he is the resident healthy kid around these parts, as a baby he had chronic ear infections. He never presented typically, though, his only symptoms were night waking and vomiting. The vomiting usually took place in OUR bed, as luck would have it. Oh, the sleepless nights! Oh, the laundry! Oh, the mattress scrubbing! Oh, the bad TV that is on at 3am while walking a cranky baby! Thankfully, he outgrew them right around his second birthday and this is the first one (or rather two) since then. We have not missed the ear infections. Not one bit.

Our dear son climbed into our bed around two in the morning, tossing and turning, crying out about both his ears. He couldn't get comfortable enough to sleep no matter what we tried, and it wasn't time for more medicine yet. So we accepted our defeat turned on the bedroom TV and let him watch cartoons until he could have more medicine and felt well enough to sleep. (Thank God for Noggin! And Boomerang! YAY FOR 24 HOURS OF CARTOONS!) It was a long night. Josh ended up fleeing to the sofa at some point, so he could get enough sleep for work today. And even after BubTar was ready to sleep, he kept trying to stick his hands and feet under me, or twirl my hair, or lay his head on top of mine, or roll his entire body over me, so that sleep flitted around me like a butterfly, never still long enough for me to grab hold of it. Did I mention it was a long night? Because, yes. It was. Just like the olden days.

Sleepless night, 2002. Courtesy of Otitis Media.

GREAT!

As you might have noticed, we have a bit of a cycle in regards to seeing the doctor.

'Tar gets sick/has a well check.
'Tar picks up new germ at the doctor.
'Tar gets sick.
'Tar goes to the doctor.
'Tar picks up a new germ at the doctor.
And so on.

Every time we have one doctor's visit, we have many.

That might explain why I was a wee bit nervous about making an appointment this week for a healthy KayTar. Although she is healthy, she's been having coughing fits and having to use her inhaler much more often than she should and needed to go in for a listen. I told our pediatrician I was a little nervous about bringing her in for this reason, and she told me the slowest times in the office, so we'd likely get in and out. She told me that if there was a wait, we could spend it in her office rather than the waiting room. Fortunately, when we arrived, there was a room ready for us. Not only was the room ready for us, it had been unused so that there were no errant germs. The pediatrician came in an assured me she has just scrubbed her hands and all the instruments had been cleaned. We were so very careful, and in and out like lightening. (the verdict was that KayTar is having prolonged expiration and needs to add an inhaled steroid to her regimen)

So imagine my dismay when I get home from a brief shopping trip to find BubTar complaining about his ear. He asked me to clean it and told me he had already tried pouring water in it to make it feel better (great! not!). I gently wiped the outer inside part with a q-tip and found green discharge. Ewww. I asked him if he wanted medicine and he said no, so I left it alone. Thirty minutes later he came up to me crying and begging for medicine. The kid HATES medicine. He hasn't had an ear infection since he was TWO! Of course he has one now, when we did everything possible to ensure we would NOT have multiple doctor's visits. He's had allergy-related drainage all week and I'm sure that was the catalyst, but still, I'd like to see the odds here.

Evidently, we'll be heading to the pediatrician yet again on Monday, unless this somehow resolves itself between now and then. Of course we will.

Quilts

My mother makes a special quilt for each of her grandkids. BubTar got his for his first birthday and KayTar got hers yesterday, although it is considered a late third birthday present. Her quilt is so full of her personality, I just love it. It has her favorite colors and favorite things, animals, letters, flowers, books, hats...all sort of good things. It turned out just right, as did BubTar's almost 5 years ago! (I can't believe he's nearly 6!) Without further ado, the quilts.

KayTar's:








BubTar's:




And a old, terrible quality photo of wee little BubTar and his quilt.



PS: KayTar saw my post and said, "My new BLANKEY! That's AWESOME!" She cracks me up. Then she added, "Look at KayTar, she's a QUEEN." Indeed.

Moments

Yesterday I got a note from a parent of one of BubTar's classmates. A girl classmate. Inviting him to an impromptu birthday lunch at the local Chuck E. Cheese today. It isn't really a party, just lunch with a few of her friends, and BubTar was invited. After we were done discussing the lunch date, BubTar was quiet for a bit. Then he piped up, "Mom, you know my cheeks turn red when I look at [girl classmate's name]." I worked REALLY hard not to giggle (because let's face it, could that even be more adorable?) and I said, "Oh really?" And then he blurted out, "ButIdon'tloveher!"

****

Yesterday KayTar pulled cotton from the end of a Q-tip and stuck it to her upper lip (like a white mustache) and said, "I'm old!" then she took it off and said, "I'm new!"

Logical, isn't she?

****

BubTar received his first friend phone call last night. From a DIFFERENT little girl in his class. Little kids on the phone are so funny, they look just like miniature teenagers. Josh asked me where the little girl got our number. We sent birthday invites home this week with our number on it for RSVPing. I guess we can expect more phone calls. After he was off the phone, I asked what they talked about. He said, "You know (yes, he starts almost every sentence with "you know"), my birthday, [other girl classmate]'s birthday. Stuff." I prodded, "Anything else?" He was clearly put out by this and sighed, "Just stuff, Mom. I don't know." Evidently he SOUNDS like a miniature teenager, too.

****

Every day when I study, KayTar sits next to me at the big table. She grumbles under her breath about "doing my work" and demands various colors of note cards.

"KayTar, don't you want to go play blocks? Or puzzles? Or with your dollhouse?"
"No. Just doing MY work. Purple card?"
"You already have a purple, just use that one. (yes, I sort of hoard my note cards)
"Nooo. TWO purples. More purple. MORE PURPLE."
"Okay. One more purple."
"Fanks. Weave you awone. (leave me alone) Doing MY work."
If I keep trying to engage her, she says, "Stop talking! I not wistenining (listening) to you! Just WORKING."

Occasionally, when she gets to a break in her work, she points to words in my textbook and says, "Say 'What does that say?'" So I do, and usually, she reads it, regardless of the fact that I happen to be studying a college level anatomy text and that words like endocrine and thyroid aren't typical fare for the three year old set.



PS: When you think everyone has stopped reading your blog because you've only gotten a handful of comments in as many days and you're wondering if you somehow said something offensive in one of your posts...it's probably a good idea to check your spam folder, because it might be overzealously eating ALL of your comments and discovering all those backlogged comments will be a little like Christmas day...or some other day when you discover that everyone doesn't really hate you. You know, in case that ever happens to you. This is purely hypothetical, of course.

Wordless Wednesday: Home Run!

Click here for more Wordless Wednesdays!

Raindrops

We are reading the Velveteen Rabbit. She touches the rabbit's face with her wee finger and says "Oh, he's got rain on the face."

****

We're in her autism evaluation and the SLP is having her name picture cards for pronunciation purposes. She is doing well, typically three, I think. At one point she impresses us all by calling a ring an "emerald". Fancy. Then they get to a photo of a girl crying and she says "Dat's a girl!" The therapist asks, "Is she happy or sad?" No response. The therapist prompts, "Is she crying?" KayTar makes some jargoning noises and then looks around the room. The therapist taps the page on the tears. "Oh, dat's wet. Water." The therapist says "She's crying. Do you think she feel sad?" Jargon again. Then nothing. The therapist says, "That's so interesting. She is so engaged and responsive until you bring up emotions and then she's got nothing. You just hit a wall and then she turns into a deer in the headlights. Interesting."

****

"No KayTar, those are tears. Tears on the bunny's face. Bunny feels sad. Bunny is crying." She says, "No. RAIN. Rain on the face. It's wet."

****

She's crying.
"KayTar, are you crying?"
"Yeah, crying."
"Do you feel happy or sad?"
"Sad."

****

I wonder what they see, what their tests will show. I wonder what it means. I wonder why emotions are so foreign to her. I wonder why she can't translate them from herself to others. They cannot be weighed and measured. They are not reasonable. Maybe that's it. You can't memorize the ephemeral. You can't regurgitate it. It isn't knowledge to be acquired, it is an innate understanding that grows with time. But to grow, there has to first be a seed. Does she have that seed, I wonder, buried beneath the soil of her soul? Some days I think I see a tiny sprig of green peeking out, but it disappears beneath the soil before I'm even sure of what I saw. One day will it really sprout and grow? Will it stretch it's green leaves to the sun, nourished by the rain from a loved one's face, and finally bloom into the beautiful flower it is meant to be?

Yes, indeed.

At the evaluation, the SLP showed KayTar a picture of a vacuum and asked her to identify it.

KayTar said, "Dat's a vacuum."

The SLP asked, "Does Mommy have a vacuum?"

KayTar said, "No! Daddy! Daddy has a vacuum!"

The SLP laughed and said, "Oh, I like that even better."

So do I. So do I.


Arg. This little matey knows who swabs the decks 'round here.

Autobiography.

Six word autobiography: Yes, you can see my ID.

I never thought

I'd be so happy about this.

Today, KayTar ate:

1 YoBaby
2 Stage 2 Sweet Potatoes

I remember a time when I was so tired of the darn baby food. All I wanted was for that endless stage to be over, but I always thought that once she was off the baby food, she's move on to real food. That clearly has not been the case. We've tried many times to reintroduce baby food, only to be rebuffed. Not today, though. SHE ATE IT! I am so glad the baby food is back. She had VEGETABLES! For the first time in months! HALLELUJAH!

Maybe it has something to do with the kicky boots?



I think so.

(Today is the final portion of the wee girl's autism evaluation, wish her luck!)

Where I'm not.

This morning, I'm supposed to be at an appointment with KayTar's feeding disorder specialist.

Guess what?

I'M NOT.

Why?

No insurance.

Like I said this weekend, there is a facility fee (RENT TO SIT THERE!) of $120 for a 1-2 hour appointment, most of which is not being spent actually seeing a doctor. On top of that, there is also a physicians fee of between $90-150, since we are returning patients. If we were new? It would be $200-300 to see the doctor. If the doctor were to choose to run tests? We're looking at another $200-$450.

So yeah. We rescheduled for the first available, JULY. Hopefully we'll be insured by then.

I rescheduled, not because she doesn't need it. Oh, how she needs it. But because financially it isn't a wise move and I know that in 3 months, we'll be in this very same boat anyway. Her weight is maintaining, so it isn't urgent. Pediasure suits her just fine. But if we ever want to have hope of getting past this, KayTar will need to see this specialist AND restart her OT. Neither is possible until we are insured.

Yesterday she ate:

One bite of chicken
One Oreo inside (just the cream)
Two fries
Three bites of guacamole

Every day seems to be variations of the same. Chips are usually a hit, we can usually get her to eat a serving of chips a day, but nothing is for sure. And even so, CHIPS? As a sole food? Not good. Even foods she really enjoys, she won't eat reliably. She eats something really well once, and it is a week or two or four before she eats it like that again. We've been treading these waters for 3 months now, and honestly, even with the appetite stimulant, there is no end in sight.

I'm so very thankful for Pediasure and her trusty bottles, because without that magical combination buoying her weight and health, we'd be in much more serious territory...maybe contemplating things like surgery at a time when we have no insurance. So for that, I am thankful. I'm thankful we are only having to decide against NEEDED treatment, rather than having to decide against CRITICAL treatment. But honestly? No one should ever have to choose between their health and their finances in any way, big or small. Sadly, it happens thousands of times every day right here in the wealthiest country on earth. And still, as a society, we approve of this, we think of health as a privilege, as something only the wealthy or insured deserve...that if someone is neither of those, they should just try harder. America, the land where anyone can pull themselves up by the bootstraps, where if you catch a tough break it is no one's fault but your own. America, where it can't be the system that is broken...no, it must be the people that are broken.

Photographic summary of KayTar's relationship with food. Entitled "How This Pains Me".

Away

This kid spent the weekend at his friend's house.

Not just a night. Two nights. Two evenings. Two days.

The weekend.

Gosh, I missed him.

Not initially, he has overnights pretty frequently, so I'm used to one night away. But once that time period passed, my maternal alarm clock started blaring, "He should be home by now! Where is he?!" and it made me CRAZY.

He had a blast, swimming (you should see the sunburn), video games, toys, friends, movies, baseball, restaurants, and church. The first thing he said after returning home was, "Next time? This summer? I'm staying for THREE nights!"

No, "Oh Mom, I missed you!"

No, "I'm so glad to be home."

Nope. Nada. Just the promise that he is so outta here this summer.

And surprisingly, I wasn't stung by his lack of reciprocation. I just held him down and tickled and kissed him until I felt he had paid his penance for not missing us more. I continued to ask him "But BubTar...didn't you miiiiiiiiiss meeeeee?" throughout the evening, just to see him giggle and shake his head no. I know he was thinking "My mom is CRA-ZEE!" But it sure was fun to tease him.

Somewhere between tickles and teases, I realized something, this is the warm up. The tiny little bits we let go here and there, letting our children stretch their wings and learn how to be without us, letting them create their own worlds, choosing what they'll do, who they'll befriend, how they will behave. It is practice for both of us, warm up for the big stuff down the line. Overnights turn into weekends away that turn into weeks at camp that turn into leaving for college that turn into living on their own that turn into marriage, perhaps. We slowly give away our ownership of these little people, handing them the reins, just a bit at a time to let them feel what it is like to be in control, to be the one steering, so that when they finally do ride off into the sunset, it is second nature to wave a fond farewell, knowing they are prepared for what lies ahead.

At bedtime, despite protests that he SURELY did not miss me, he begged me for a little extra reading and a little extra cuddling, and I readily complied. As I snuggled up next to my baby turned big kid, I thought, some day I'll have to watch him ride away, but I sure am glad it isn't today.

BubTar and Best Friend

I should write today...

But I've had a killer week...

Interview with the CDF

School district home visit for the KayTar

Rough draft of a group project for English

English quiz

Double portion of Philosophy

Major A&P lab practical (which I think I made a 100 on)

Chaperoned a field trip for BubTar

And next week promises more of the same...

Feeding Clinic appointment (which will likely be canceled because it alone costs over $300, not to mention the additional cost of test, if needed. the "facility fee" alone is $120...that doesn't include the physician at all...just the cost to sit in the office. I'M PAYING RENT. my 1-2 hour appointment costs as much as a one night hotel stay.)

Final portion of the autism evaluation for the KayTar

English assignments and quiz

Philosophy exam

A&P lecture exam, several chapters

So today will be spent...

Studying

Studying

Studying

Doing laundry I've neglected

Studying

Studying

Studying

Grocery shopping

Studying

Studying

Studying

Going to dinner with that crazy Bloggess and hopefully Julie, too, if the Democratic convention lets her out early enough...and from the looks of it, that is sure to be the highlight of my day.

So this is me, not writing, but promising I might soon. Maybe tomorrow. Or next week. Or something like that.

This is why I don't tell KayTar, "Say cheese!"

The Interview

Want to hear something surreal?

Our story is being told today in a hearing at our state Senate. If you follow the link, it is the Committee on Health and Human Services at top of the page. There is audio and video, but for some reason I can't access it on my computer.

Our story. In the Senate. Wow.

The interview went well, with the exception of BubTar shouting "Mooooom! Come wipe my buuuuuutt!" while she was tape recording the conversation. CLASSY! Honestly, I feel like I ramble on at times, but she said I did really well. It felt like it went well.

At the end she said, "Did L tell you that your story will probably be used on a national, as well as state level?"

I'm sure I answered with an eloquent, "Uhhhhhhhhh....okay, sure." while my mouth hung agape.

Then she said, "And we may want you to speak to the media, too."

And I passed out. Okay, I DIDN'T pass out. But I thought about it.

And she also said there is a book being published this year that our little tale might end up in, too.

That's when my head exploded. Okay, not REALLY. But almost.

Wow. Just wow.

Also, the CDF will be one of the featured charities on American Idol's Idol Gives Back show on April 9th. They are going to be working to get our story (and other's, too) up on their website so it is ready for any traffic the show generates.

Crazy, right? RIGHT.

I'm entirely out of my comfort zone here, and yet, onward we march. It is such an important cause, not only because it personally affects our family, but because it affects so many families and it is swept under the rug so often. There is a gross misconception about the state of healthcare in our nation and it is time that people realized that. And so I'm sharing our story. What else is there for me to do?



PS: Photos from Austin, as promised, and as stolen from Jana's flickr.


Me, Julie, Sage


Sage, Jana, Me

Contentment

This weekend, your brother and cousins were running around the yard. You grabbed my hand for help and tried so hard to run after them. They made it back to us before you and I ever stepped off the porch, and in a blink they were gone again. You and I kept moving, slowly and steadily across the terrain that feels so uneven to you, an unevenness I can't even register. Somehow, this manicured lawn is bumpy enough to knock you down. You shout "Friends! Friends!" as they zoom past us, again and again, as we plod along at a snail's pace. I see your eyes light up when they come close and I watch you wishing to follow them, to run free like all the others. I say, without thinking, "Poor KayTar can't run and play like all the other kids." I don't mean anything by it, I just say it, like maybe I'd say "Poor BubTar can't find his missing Lego." But then I think, really, it must be hard to be the one left behind. The one who can't do or keep up. You don't mind, though, holding tightly to my hand as we walk a wide, slow circle before returning to the safety of the porch. Even though you aren't part of the games, you laugh hysterically as waves of absorbed excitement crash through you. You watch and smile, happy just to be.

What would you say?

A couple weeks ago, I had a phone interview with someone from the Children's Defense Fund regarding our insurance woes. You can follow that link for handy little factoids, such as MY state has the highest rate of uninsured kiddos in the nation! Go Texas!

This was the only conversation I've had with anyone about this situation that gave me any hope at all. It was a quick phone call, mainly exchanging of information, but it was the first phone call that didn't end in some variation of "I'm sorry, there is nothing more you can do". It was the first phone call that left me with the smallest glimmer of hope.

She said that their outreach teams would be contacting various insurance agencies in our state, sharing our story with them, and trying to get somewhere. They will also be contacting legislators to that same end. At the end of our conversation, she asked if I would be willing to share our story with a larger audience, allow them to share it with the media, especially as they push for changes to be made to the current system. I said yes.

Tomorrow someone is coming to our house to interview me and take photographs for the story. This is a whole new world for me. I've never been THIS person. I've always been the person who politely declines and is much happier to stay silently in the background. But that KayTar, she got to me, and for her I'll shout it from the rooftops. But it isn't only that. I live in the state with the highest rate of uninsured children in this nation, and not all of those parents have the opportunity or voice to speak out. If I do have that ability, I have to take it...not just for KayTar, but for all the children like her, and all the families like ours. It's time for a change.

The interviewer sent me questions to ponder in the meantime and I'd like to leave you with one. What would YOU tell lawmakers about the need for SCHIP and Medicaid? I know my answer already, but I'd love to hear yours as well.

Cross posted at MOMocrats.

And don't forget to visit my photo blog for my Best Shot Monday!

Message from the desk of Anna WinTar

Have a fabulous Easter!

Another little milestone

Yes. Swimming. In March. Do you hate me right now? You'll feel better in May when it is so hot here that we can't go outdoors without risking heat stroke (really, we get nifty little warnings on the news).

My wee laddie spent the night at a friend's house for the first time last night. After our playdate yesterday (pictured above), he was invited to stay the night and he accepted. It was boy heaven. He had endless playtime with his best friend and his older brother (two friends for the price of one!), they went swimming, played video games, pretended to be super heroes, and ate pizza for dinner and McDonald's for breakfast. Yup. Heaven. He actually told me that it was "THE BEST DAY OF [his] LIFE!" I was fully expecting a phone call to retrieve him at some point in the night, but nope. He did it. And he loved it. My little guy, he's growing up every day.

Spring Break: Part Two Still Alive

So far:
Space Center
Mini Golf
Bowling
Go Carts
Chuck E. Cheese
Plenty of sunshine

Up next:
Playdate with best friend
Fun with cousins
ZOO!
Easter at OUR HOUSE. Ack.