Back on the ground...

I had a whirlwind weekend complete with a very short trip to Chicago to volunteer with the Children's Heart Foundation on working on a national awareness campaign in collaboration with the newly formed National Congenital Heart Coalition. It was exciting to see so many people devoted to this silent epidemic come together, despite diverse agendas, and be able to set the initial stage to begin work on a national awareness campaign, as well as national advocacy efforts. I'm ready to roll up my sleeves and get to work!

On the lighter side of things, the trip was as crazy as any of mine... 3 hour delay on Friday on the way out, landed to find snow on the ground and realized I hadn't brought a coat, stayed in a total roach hotel near the airport (avoid PriceLine!!), drove a Chevy Cobalt (not as bad as I thought it would be) and watched a medical emergency unravel on the plane on the way home when a gentleman went into a severe seizure. Unfortunately, he lost control of all bodily functions, which is quite ummm... gross when canned together for an hour. I can only imagine how embarrassed he must have been when he came to. Thankfully we had a cardiologist on flight (he had severe hypertension which led to the episode), and we didn't have to reroute. We were escorted in once we hit the runway by the police and he was met with 3 ambulances. The end result, however, was that the front of the plane cleared out after his episode, as the stench was overwhelming. This caused problems, however, so some were asked to go up front to balance out the plane. No one wanted to. So, seeing as I am frequently faced with poopy pants, vomit and other such lovely things, I went up there, wrapped my jacket around my face (which I bought while in Chicago) and hoped for the best, not knowing if it was contagious at that time. I was relieved to later find out it was not. Hope the guy feels better and it's nothing serious.

I also had a freak-out moment of my own when faced with the fact that Sadie is a "high risk" cardiac patient that will need follow up and, likely, further treatments as she grows. Realizing that there are not enough experienced people out there who know how to deal with CHDs was a real wake up call. I know, I know, I should realize this, but when faced with it written on paper, I felt my stomach plummet. It's easy for me to think that her case is much less severe than most as I have now found myself deeply entrenched in a large social network of children with heart defects much more severe than hers (so I thought at least), but the reality is that it is still extremely serious. I've always known this, but admitting it is an ENTIRELY different matter. I couldn't sleep a wink last night thinking about it all, and was ready to get home and forget about it. As I rocked Sadie to sleep before her nap, the emotion of it all totally overtook me... I am NOT a cryer, but months and months of bottled up stuff just came pouring out. I think I need a breather from all this this week to recoup. That being said, a friend's daughter is going in for cardiac cath this week, so I know it will never be far from my mind. Please send lots of positive energy and prayers to my friend Karen and her family, but especially to little Jameson, who is one of Sadie's heart friends.

So, that was the weekend's fun for me. I was greeted at the airport 30 minutes late by Jason with an overly excited Katie and extremely exhausted and (ah, the irony) thoroughly poopy panted Sadie. The ride home was complete with high pitched screaming, Katie's exhasperating attempts to shout over her sister and Jason's general grumpy, stressed out self. Ah, home again.

Post Pascha Prilosec Please

Ugh... pass some relief this way, please. The girls had a fantastic time this Easter, but this momma could crawl into bed and sleep for a year. Who the heck was it that decided plastic eggs and candy should be a part of this day's festivities? Clearly, not a parent.

The morning started with Katie awaking at 5:20 to follow a trail of glittery confetti and eggs that led her to the ultimate payout - Easter basket complete with a new Webkinz and Hannah Montana CD (yes, I am a glutton for punishment, thank you for noticing). She managed to keep things quiet for a little over an hour before waking her sister, who discovered her basket. Sadie proceeded to bite through Hershey kisses wrappers, and when Jason put the basket out of her reach, found a way to get to it, grab candy and then run like all heck to a quiet spot where she could imbibe. Around noon we headed to the Thies clan's homestead in NoVa, where five cousins hunted for 149 more eggs . The ride home was one that even Satan couldn't come close to imagining up as the ultimate punishment in the depths of his fiery kingdom. Two candy-cracked out kids, two irritable parents and an insane lack of sleep led to the best case of heartburn I've ever had. Screaming, kicking (some of it the kids' doing), loud music and a 5-year-old with diarrhea of the mouth, it was one of the longest 1.5 hours of my life. Finally, they are in bed.

Now to hide all the candy they got today, to be given out in small increments over the next, say, three years. I'm sure there's enough that if it were one piece a day we could do that, with a few pieces left over.

Onwards and upwards. I did manage to get out to the office for some quiet moments (now), and read a blog entry in one of the many I keep up with that I'd like to share from AuspicousJot...

To me - resurrection is about the slow invisible pulse of life that flows in our seasons and quickens in Spring.

Resurrection is when you think you can never love again; when your heart is so broken that you let it die instead of trying to heal. When there are years of cold in your heart. And then... and then... you meet someone and you feel it again. The early pangs, the budding, and the full aromatic blossoming of a heart bursting with love. Resurrection.

Resurrection is people who live in the dark and endless tunnels of depression who see a glimmer of light and have the courage and the stamina to start running for it. And the darkness is so much more than that little flicker of light, but they run and run and run.

Resurrection is a hope that more people will resist taking up arms and instead hold hands with strangers. Cities will be rebuilt. Wounds will heal. Peace will be learned and taught.

Resurrection is every person in recovery working the program, going to the meetings, being clean today. Resurrection is starting all over again tomorrow.

Resurrection is apologizing, forgiving, learning from your mistakes, not dwelling on the mistakes of others.

Resurrection is trust, hope, faith, and awe.

Resurrection is leaving a little bit of room in your life for the impossible to take root and become possible.

Resurrection.

Beautifully written. I needed a bit of food for the soul, and this left me with a warm and fuzzy feeling about a beautiful day, and its true meaning. Rock on with your chocolate bunnies, kiddies. Momma's back in the game.

Life with Carly Sparkles

Don't let this photo of a sweetly sleeping dog fool you. She is NOT that way often.

Carly Sparkles's schizophrenia has added to the mayhem that is the Thies household. Here are just a few of the personalities that she has displayed thus far...

Carly the Wanderer. Yes, the pup has total wanderlust. Her yearnings to travel has taken her to every neighbor in our vicinity, despite fences up to six feet high. She digs, climbs and squirms her way into other yards to socialize. She's a conscious traveler, though, and often brings us unique gifts from her explorations, including clothing items, trash, other dogs' toys, and a series of antlers that are currently strewn about our yard (last count, 7 pair). The other day a neighbor from behind our house dropped by to see if we had any of his children's shoes. Alas, we did. Two, actually, one for each of his children. When I mentioned antlers, he admitted that these, too, had come from his yard. Surprisingly, he did not want these trophies back.

Carly the Destroyer. Given the mix of breed, I'm surprised, honestly, that there hasn't been more damage. Mostly, she prefers to chew shoes, diapers (when she can find them) and underwear. However, we've caught her with glass, aluminum siding and, once, chewing on a wrought iron chair.

The real destruction comes from her digging. Through teamwork she's created a six-foot wide hole to gain access under our neighbor's privacy fence to visit his very lonely and neglected black lab mix. Really, in her digging, she's trying to do a good deed, I am convinced. The neighbor is not so appreciative, and on his side has laid down bricks, 2 x 4s and other items to prohibit her entry, and his dog's escape. Carly responds by simply digging deeper or moving down a few inches and starting again. The neighbor will soon run out of bricks.

Carly the Killer. She has a taste for rodents, with a particular palate for squirrels. Once she acquires one, she uses it first as a squeak toy, gently squeezing it in her jaws to get the squeaks she so loves to hear until all the air is out. Then she moves to the tail and uses it to toss her new "toy" in to the air. I have tried to save a few, but often find them in a pretty sad state once wrangled from her, so return them to her so she finishes them off quickly. Her hobby has forced us to create a squirrel cemetery in the bamboo patch behind our home. The first few got crosses on their graves, but Katie quickly grew tired of naming them and making gravestones, so now it's unmarked.

She also goes after moles by "flushing" them out of their holes. She'll hear one in the ground, gauge where it's exit is, then start on the opposite side by digging a hole. She digs until the blind little creature is forced out of its hole, at which she grabs it and begins the squeak toy game. Jason is dismayed by the giant holes pocking our yard, but I'm secretly happy. I hate those critters, and I think Carly's pretty ingenious in her tracking methods. Besides, our yard is now blissfully free of unwanted critters.

Carly the Lover. Carly is quite fond of her people and lets us know every waking moment. She has a tongue that is longer than she is, and loves to lick you when you are not aware she's within radius, eliciting "ewwwws" from the younger inhabitants of our home. She's extremely tolerant of Sadie's constant need to stick her fingers down her throat, pull her tail and give her kisses on her nose, and loves to sleep with Katie when allowed. She especially adores poor old Darla, and puts her paws over the senior dog's shoulders to hug her. Which Darla hates, and responds with by nipping at Carly. Carly is either too stupid or too loving to care, and will return the hate with more love, in the form of inner ear licks. Darla is especially fond of this, and a barking match will shortly ensue. Every once in a while, though, I find the two cuddled up side by side or playing in the yard, and I think that even Darla's come around to the newest addition to our home.

Carly the Protector. Perhaps my favorite part of our newest pet is the fear she elicits in others. Though we know her to be sweet and loving, if people catch wind she's got some pit in her, they instantly fear her. A few weeks ago a woman in PetSmart told me how proud she was to pet Carly - that she'd never been brave enough to pet a "killer" breed before. I just sighed. This being said, Carly can put up a good front when necessary. Recently, an unfriendly dog was barking menacingly and came running at us as we passed its yard on our nightly constitutional. Carly stopped dead in her tracks and began to growl in this eery, scary, deep voice I'd never heard escape her muzzle... and it made my hair stand on end and stopped the dog dead in its tracks. Another woman was walking some furry, yippy little rat on a leash (decked out in some hideous fake fur coat), heading our way at that precise moment. Hearing the growl, she turned on her heal, briskly switched to the other side of the street and high tailed it out of there.

'Atta girl, Carly. I guess you're a keeper.

Justice is Finally Served

On October 16, 2003, Jason's cousin, Taylor Blanton (a Virginia state policeman), was murdered in his home. Three days later, we attended what was one of the saddest and strangest funerals ever imagined. Hundreds filled the building for Taylor's eulogy, packing several rooms.

What was so bizarre about the funeral was watching the murderer, there in attendance. Hugging OUR family. Most of our family suspected who it was, but hadn't had the heart to confront Taylor's dad, Jason's uncle Ray. In fact, Ray and his wife were watching the dog for Donna, Taylor's wife and his murderer, at the time. I shuddered as she was carried past me when she "collapsed" outside of the funeral, and my brother-in-law, who is a firefighter and "in the know" about her pending charges, nudged me and told me to "watch the show."

The procession continued to the graveyard, where many in Jason's family lie. Only a short month before Taylor had been a pallbearer for Jason's brother's funeral, in the same cemetery. The irony was not lost on us. Though I didn't know Taylor any more than a casual acquaintance, I could not hold back the tears as I watched his mother and father, his children and Donna kids in front of the grave. I will never forget was when the police presented the American flag - not to Donna, who stood expecting it - but to Taylor's mother. I knew then that the police had confirmed that she was the murderer.

In the days that followed, we heard the hideous details of Donna's plan for murder, from staging a break in two days before, to a note left on the porch. She even said that Taylor had been shot while she'd been in the shower that morning, preparing to have sex with him, and that she came out when shots were fired, saw Taylor's gun lying on the floor, and fired shots at the fleeing intruder. We held our breaths and hoped that there was enough evidence to nab her.

Four days later Donna was arrested. She finally was convicted in 2005 to 28 years. Our family was appalled and sickened at the light sentence. Then came another blow - she won an appeal based upon the media coverage of the incident in the local area she was tried in, and got a retrial. That trial has been taking place for the last few weeks in Virginia Beach.

This past week, the jurors heard testimonies from two Taylor's kids and Donna's OWN children. (I have the highest respect for those four kids!!) They heard about Donna's web of lies, saw physical evidence and heard the investigator's reports.

Today, the jury recommended life in prison. Finally, a bit of conciliation.

Rest in peace, Taylor. Justice is finally served.

Blogging Crack

This is your brain on blog crack.

For my avid readers (all 2 of you), you may have noticed I haven't rated the book I put up over two months ago that is my "current read". That's because I haven't started it.

While last month was a huge interlude into CHD Awareness (sorry for forcing it on you), I also had a guilty pleasure I'd been indulging in private. Like any good narcotic, I've become totally addicted to a clever and witty blog I stumbled across. I tried to limit myself to a few entries a day, but quickly devoured it all. Now I greedily wait for my next fix...

If you'd like to sample my drug du jour, check out Cul de Sac Blues. You have to start at the beginning of the blog, or it won't make a lick of sense. Before long, you'll be as absorbed with the happenings at Burning House and the Three Dougs misadventures as I've been.

How'd you find me?

My friend Amanda posted some of the random search phrases people had used to find her blog, and I found it greatly amusing. So I decided to dust off the forgotten analytics stuff I'd installed for this site and check out who'd been here, and how they got here. It's wierd who's out there watching. And reading. I need to quickly banish it from my mind, or I'll never post like my normal self again. Even stranger is the number of hits I get from search engines... and how people land at my little piece of cyberspace. Here's some of my favorite random searches people that caused them to land here...

"a hokie is not a mercenary"
"c'mon barbie let's go barbie"
"correct dosage of methadone for fish"
"cow attacks" and "maymont cow news"
"busiest time of day at walmart" (man, did they pick the wrong site!)
"stabbed with an iv needle from cats"
"the hand is quicker than the eye"
"so what is reality, really, at 32,000 feet"
"invite preschool class to party with me"
"curly tail pitbull freak"

Can you imagine their disappointment when they landed here?!

Last Day!!!

It's the last day of my mega-blog-a-thon and I can not be more relieved. I learned a lot through this experience (shared on the learnaboutchd blog if you're interested), but most of all I learned what great family and friends I have that have undertaken this campaign with me. I really appreciate all of you who posted logos, referenced websites, sent encouraging emails, called, etc. I can't tell you how much it means.

This is just the beginning for me, though I won't be quite so intense about the entire effort (I don't have the energy!). I really feel that CHD awareness is vitally important to tomorrow's unborn children, to our children who have CHD and will soon be adults without experienced medical care available for their special hearts and for moms around the world. I hope you'll join me in these efforts!

Here at home, I'm finally starting to recover. I ate solids and kept them down! Hooray. It's the little things, right?!

Sadie has been in rare form all day. She's learned to climb on top of the coffee table, on the backs of the couches, throwing fits, biting the heck out of me (anyone have suggestions on that particularly lovely behavioral issue?), tore open a package of pretzels stolen from the cabinet, crunching them and spreading them into the carpet, pulled the cat's tail (multiple times), sat on Carly Sparkles (clucking like she was riding a horse) and that's just what happened before noon... she wears me out.

Thank God for her mended heart. How boring and pale life would be without her!

Darn.

So close to my goal of a blog a day, but didn't quite make it. I did put up a post yesterday on learnaboutchd, so I guess that counts, right?

Flu is still raging. I thought I was better this morning, and headed out to work in the office a bit, only to be promptly reminded about 45 minutes later that the flu had not had enough of me yet.

I am dying to get out of this house! Katie doesn't seem to have the flu. Just sore throat and slight fever. Thank goodness. Sadie's still ok. Guess I'm just the lucky one!

I promise to be back to my blogging self soon...

CHD Awareness

Sick today. Please see post on learnaboutchd.blogspot.com.

Four days to go on this silly blog-a-thon idea I had. Ugh.

Flu.

Need I say more?!

I woke up Saturday morning in Boston with my throat raw at 4:00 a.m. I figured it was from playing outside in the snow the night before with only a light jacket on (totally didn't pack right for Boston), so drugged myself with ibuprofen and coffee and headed to the mall for last minute souvenirs. Shortly thereafter, the rest of the flu bug made itself known.

The flight home was uneventful (thankfully) and the kids and the rest of the zoo at our house were most welcoming. I however, just wanted to curl upstairs for some shuteye. Not happening.

Fast forward to today... been battling a 101 temp all day, chills, angry throat, angrier bowels and a raging headache. Katie was great all day - played on her own often, and tried to entertain Sadie from time to time. Sadie, on the other hand, is a teething banshee who was not having anything to do with anything I wanted her to do today.

Whatever happened to sick days?!

Running for Harlie

I have the best reason I've ever had to get my butt back in shape. My friend Christy has a precious little girl named Harlie, who was born with more anomalies than anyone could ever anticipate. As you can imagine, her family faces incredible bills to help Harlie to be able to grow and thrive.

James River Grounds Management has created a fundraiser for Harlie as part of the Monument 10K here in Richmond. If you're willing to walk or run it, or would like to support me to do so (yes, my fat butt is going to do it), let me know or register using this link!! Here is the invitation letter...


January 29, 2008

Dear Valued Partner,

Whether we are ready or not, 2008 is here, and James River Grounds Management has an important New Years resolution that involves your support! On April 5th over 25 of our staff members will be running (or walking) in the Ukrop’s Monument Avenue 10K. In alignment with our resolution of giving more of ourselves to our community, we will be running in honor of a very special little girl.

We would like to tell you about Harlie Caroline Holton. Harlie was born on September 25, 2006. Her parents knew she was going to have challenges, but no one was prepared for the road that lay ahead. Harlie was born with an exhausting list of birth defects. The most emergent being a complicated heart defect called Congenitally Corrected Transposition of the Great Arteries. In basic terms, her heart is backwards. She had her first open heart surgery at just four days old, her second at six months, with a third to be at three years old. In addition, Harlie was born with an underdeveloped lower jaw and missing bones, forward low set ears, a dysmorphic left ear with no canal, left eye defects, vertebral anomalies, missing ribs, misshapen skull, anoperineal fistula and a lung defect that required the removal of most of her right lung. This is just what has been uncovered so far. Harlie has undergone seven surgeries and spent over four months in hospitals. This spring, she will face her eighth and ninth surgeries, as doctors work to stop her chronic vomiting so that her jaw can be reconstructed. The correct jaw construction will allow her to breathe and swallow normally thus eventually eliminating the need for a tracheostomy tube and feeding tube in the future. In spite of everything, she is sweet, happy, smart and beautiful!

What is most moving about Harlie’s situation is that her parents (who don’t ask for anything) have the most amazing attitudes toward these challenges. Their outlook has been absolutely inspirational to all of us here at James River. When reading the above list of challenges they have faced, it would be easy to understand how a parent in this situation could feel a little angry or cheated. But not the Holton’s. Not only is Harlie a blessing to them, but they truly feel honored to have been given the opportunity to raise her. The following is an excerpt from Christy Holton’s blog dated 1/20/08:

“…one thing I’ve started to notice more and more – is that the ones that have been honored to raise these special children feel so lucky, so blessed. How can that be? We deserve to feel cheated and bitter and angry! Well, okay, we do feel those feelings. But, more than that, we feel blessed and grateful. I find that so amazing. Those that have never spent one night in the hospital with a child recovering from life-saving surgery should feel like that. Those that have never had to learn about a rare medical condition, surgery, birth defect, how to be a nurse for their child, etc. should feel like the luckiest people on earth… I am incredibly thankful. Every single day Harlie completely amazes me. Now isn’t that something?”

We think it is. Caring for Harlie is more than a full time job. The equipment and medication necessary to keep her nourished and safe are unbelievably expensive. The surgeries that she has undergone and those that she will continue to face throughout her life will require her parents and older brother Murphy to sacrifice greatly. Furthermore, the family will eventually be required to travel out of state in order to receive the medical care that Harlie will require. In Christy Holton’s own words… ”I fully expected to lose my daughter, but then she was born and she had so many more problems than we ever imagined, yet she was so strong and surprised everyone with her will. I am truly honored to be her Mother. She is worth every ounce of effort we have to give to keep her safe and sound. She has changed our lives forever.”

As a tribute to Harlie and her family’s amazing spirit, we at James River Grounds Management are privileged to run (walk) for her benefit. What we ask of you is to make a donation to the Harlie Fund, a legal trust set up for her ongoing care. For every dollar raised, James River will match the donation.

Please make your check payable to The Harlie Fund.

Mail to: The Harlie Fund c/o James River Grounds Management, Inc.
11008 Washington Highway
Glen Allen, VA 23059

Please try to send your donations by April 3rd. We would like to honor the family with all the donations and a list of donors after the race on April 5th. For more information on Harlie, please check out her website. For more information about the donations or the race please contact Cerise Estep, 804-550-3500. On behalf of the staff at James River, thank you in advance for your generosity in supporting this amazing little girl.

Sincerely,
Maria P. Candler
President

Some Insurance Humor

I said I don't like to do politics. I guess I lied. Today I heard a Hucakbee speech that just plain pissed me off. So, in retaliation, I'm sharing my viewpoints in comedic formats.

When I grow up...

I found my dream job. As a kid I dreamed of being a veterinarian. Then the reality of chemistry kicked in and I lost that dream. Today I rediscovered that sky's-the-limit, starry-eyed desire again.

Pamela Divinsky, VP at Ethos JWT, (yes, part of the HUGE advertising firm JWT) provided an outstanding lesson on tapping into social responsibility to increase profits of corporations. The part that I'll take away (aside from my child-like admiration of the job she has) is that companies can no longer sit aside without taking on a socially responsible campaign, and when they do one, they must do it well. Otherwise they'll get called out. Or discredited.

Divinsky came in as an unassuming, almost mousy person at the conference. She muttered under her breath that she was surprised anyone was staying, that she'd be happy to skip her talk if we wanted her to (it's snowing buckets in Boston and everyone was taking off early trying to get out), and professed several times she wasn't very experienced with public speaking.

Then she got up on stage and POW, BANG, BOOM. Talk about an awesome presentation, an outstanding delivery and inspiration. I'm so enamored with what I heard, and the possibilities this branch of work holds for my future that I don't know what to do with myself.

This video is just one of the examples that she used in her presentation yesterday, a spot they created for a local (she's in Toronto) hospital. Check this out...




Um.... wow?! Interesting trivia on this spot... they shot that in 48 hours, and everyone except for the kids listening to the lecture were real patients, families doctors and staff at that hospital.

Sidebar for my CHD awareness friends still following along on the month-long blog-a-thon, 6 days left, hooray! Also, can you imagine what we can do if we can get our message as part of a corporations national campaign? Screw the PSAs, let's dig in to our employers (or our husbands or whoever) and get them onto our campaign. Kids causes are the #1 "seller" cause, so we should be a shoe in.

Moms Will Cure CHD

Today, I've been inspired and revitalized on the whole CHD front. My day was full of outstanding presentations at the Consumer Trends Forum here in Boston. I've learned a ton, and will have more take-homes than I think I've ever had from a conference. But this is CHD month, and I'm on this mission to promote awareness, and thus one thing is stuck out in my head.

These past few weeks I've been mulling over the whole CHD awareness thing. Why don't people know about it? Why is it a "silent" epedemic? Why can't we get more research dollars?

You know why? Our children do not have a vote. Most CHD survivors don't realize they are part of an overall picture. And MOMS are not strong enough advocates. Sure, we tell our close friends and family, maybe even a congress member, but we aren't using our greatest strengths to change the face of this daunting task.

Don't get me wrong. As parents of children with CHDs, there is nothing more we want than to find treatments, answers, cures. There is nothing more we want than to save another mother from the pain we have seen ourselves and watched our children endure. But we are discounting ourselves.

One of the speakers at today's meeting was Maria Bailey, founder of a mom-based marketing group called BSM Media. A lot of things she talked about struck a chord with me (e.g. finding out I'm a mompreneur, how moms will decide who the next president is and how much major brands want to woo us). I left with the new reality that more moms are coming who are connected, who share my values, and who work in a similar manner that I do, yet share my family-first values. We, the mompreneurs, soccer moms and SAHMS, have more power than I ever imagined.

Why does this relate to CHD? Because I think we're underselling ourselves as moms. I myself have said, "I'm just a mom" when referring to my role in CHD awareness. I've made a weak attempt at awareness. And I discount my desire for change (I want it, but can't achieve it on my own).

Here's the reality check. I'm part of a $2.1 TRILLION dollar buying power who can influence my favorite brands. My vote will change our future. My voice does matter, because it's not a voice of one, but of thousands. We have POWER, and it's time to tap into it.

Tonight I learned that we have more influence than I ever imagined. Now it's our responsibility to tap into that power to bring attention to the matters we care about most - the health, well-being and future of children and adults with CHD. It's time to erase the "silent" part of the epidemic we face and find answers. I'm fired up and ready for action. Now for the next step...

- How do we come together to accomplish changes in legislation?
- How do we join forces and change the pitiful funding for the research that will change our children's lives?
- And how do we use our buying power and leverage to influence major companies to join our fight for our children and future generations?

Bahston

Still here, still alive and still kicking on less than 3 hours of sleep in 24. I l-o-v-e my job some days.

CHD Awareness - talking about insurance today (health, that is), and trying to find other families that have been deemed "uninsurable."

Still Kickin'

It's been a long day of meetings and drama, but I'm still alive and kicking, though posting late. This blog-a-thon is going to be tough while I'm out of town.

Didn't leave the hotel today, except to go to Kinko's and back. Long day of meetings, mayhem and more meetings. More tomorrow.

CHD Awareness - visit LearnAboutCHD. Thanks!

I Heart Boston

TodayI took off for Boston. Last time I was here, I was 7 months pregnant with Sadie and didn't feel much like sightseeing. Luckily, today was a fluke warm day here in Boston (breezy, in the upper 60s) and we only had a one hour delay, so Kerinda and I had time to hit the Freedom Trail before dark.

I think the thing we both found most fascinating was the cemetery where Paul Revere, Ben F's parents, and lots of other famous dead slumber. The tombstones were crumbling to dust, but some were still intact, and we perused them for quite some time. The graveyard was surrounded closely by buildings, and the buildings themselves had gravestones on them. We were trying to figure out if the buildings were put there after the cemetery, then the gravestones replaced, or if they were crypts in the walls of the buildings.

My favorite cities in America had been San Francisco, Seattle and Vancouver, but I think I need to scratch one of those and put Boston into the top three. It's a surprisingly friendly city, and they have wicked cool accents. I love the ocean breeze flowing up the Charles River and into my hotel room window. I couldn't get enough of the colorful row houses, each one unique and defined. And, because I'm now officially a boring grownup, the history is a lot of fun to walk through.

The girls for the first time really had an issue with my leaving. Katie normally does ok, but this time she cried her eyes out all morning. It's so hard to leave that way. Sadie was a bit upset, but then quickly moved on to breaking new things, as she is prone to do. I'm feeling a bit guilty tonight for enjoying my afternoon so much, and even more guilty for how excited I am to sleep through the night. I wonder if I can make it 8 hours?!

CHD Awareness - see LearnAboutCHD for the latest.

From My Sister...

My sister Kerinda wrote this, and I wanted to share a portion here. Thanks, Kerinda, for sharing the experience from your perspective!

I entered this world as Kim's 9lb 1oz, broken collared, colicky screaming little sister. Life for us began in a very different way, and I’m told that I made it my mission to make sure everyone around me knew that it was different and exactly what I thought about it. We grew and before I could blink, she was getting married and starting a life of her own. I was soon flew the nest and was out on my own when I was 19. At 20, I became an aunt. Being single and very naïve, I was amazed at the miracle of birth, the tiny life that I held in my arms, and the absolute wonder of my infant niece Katie. She was gorgeous. She was so cute, little and incredibly snugly. I blinked again and she was 2, another blink and she was 3. I was so lucky to live near by and hardly miss a day and I didn’t think a more perfect child existed.

Then Sadie arrived. It was the scariest phone call I ever received, fearing for not only my sister- my soul- but more so for her baby. It was so fast, all the phone calls, not being able to leave and go to the hospital when I wanted, updates not soon enough, constantly worried, I couldn’t seem to calm down.

When I finally got to the hospital, my heart sank to the center of the earth at the sight of her. Cords looked to be thrown on top of her like snakes on Medusa’s head; they were everywhere. There wasn’t a spot on her that didn’t have a tube, a band aid or a monitoring patch. My sister looked fatigued but somehow determined; more so than I had ever seen any human being. I felt so angry, scared and mostly confused as to what was actually happening.

Then there was the night I got to stay with her alone. Weeks into this nightmare, my sister and brother-in-law were exhausted and desperately needed a break, and it was their Katie's 4th birthday. I felt my heart leap when they asked ME to stay for the night.

The first few hours were okay. I watched the nurses come in and out, checking monitors, fidgeting with tubes, squeezing bags, and fuss over the amount of hair this baby had. I tried to memorize everything in the room and read each monitor and guess at its function- but I couldn’t keep my eyes off of Sadie too long. Every breath brought hope. Every delayed breath brought irrational fear.

Late into the evening, an IV had slipped out of one of her hair-width veins and formed a huge, fluid-filled blister. God I was mad. How did this happen? It’s not like she’s moving all around to have this “pop” out- she was pretty much comatose. Where’s the nurse!? Where’s the nurse that initially put this in to begin with? Lights flooded the room, machines started beeping louder and louder and there seemed to be a sea of white jackets in a 10x10 foot room. Then came the most terrifying noise I’ve ever heard. A long constant steady beep.

The next sound was silence.Every pore on my body seemed to be on fire. My eyes were dry from not blinking. This was a dream or I, myself, had died and this was hell or purgatory or something worse.

Sadie's screams broke the silence and I realized that no silence had ever taken place and I had unknowingly blocked any noise I heard after that one, steady, long beep. She was breathing. The nurses were still trying to “find a vein.” I got annoyed and wanted to intercept and help so badly. Three of the nurses left and there were three continued to hover.

Getting the nerve to look down- expecting to see something completely alien to my eyes, I saw Sadie was red and blue with rage. She was kicking and fighting them so hard. How this little baby, on all those drugs, was capable of even crying was beyond my knowledge. Two nurses were having to holding her down. It seemed so savage. In shock, I found a pacifier and touched her sweat-soaked head and began to talk to her. I told her how proud I was of her, how I would always look to her as my strength, my hope and would look fear in the face- just as she was then. But I was still getting so upset and I was desperate trying hold back my emotions to keep my voice strong and steady.

Two of the nurses had been switching places from holding to “finding” and both were overcome by this seemingly endless search. They stopped for a second, and I kept talking. She seemed to be calming down. At least she wasn’t purple with rage at the moment.

The IV still had to be put in. The inside of her tiny thighs, the top and bottom of her feet had been stabbed endlessly without luck. It looked like she was getting used to the pain.... and I finally started to freak out a little. The nurses were frantically looking at the monitors and I could see from their expressions that it was crucial to have this needle find a vein.

Then I heard them say that they wanted me to help. ME. I was asked to help hold her down, keeping her pacifier in her mouth and her arm from knocking out a different, perilous looking IV. Having lost track of the number of times they stabbed her before, I started the count again.
Three pokes later, the room began to calm and the drone of the steady beeps were welcomed again.

I felt ill but didn’t allow the thought to remain in my head for long. I had no complaints to bring to the table. In fact, I didn’t have a single thing in my entire life remotely comparable even to the last 30 minutes Sadie had fought through.

The rest of the evening was mostly, thankfully, uneventful. I couldn’t stop staring at her, watching her freshly cut skin beat from the thump of her determined heart.

Days later she went home and the drug withdrawals came along for the ride. The rest of the family was settling in, but exhausted. Screaming filled their heads, their house, their cul-de-sac and what seemed to be all of Central Virginia. Day in and day out there seemed to be no rest for Sadie's family. Swaddling and rocking and bouncing were what occasionally settled the savage beast-child. Dark circles found the best place to reside and quickly settled onto three faces. Katie was tired, somewhat jealous, but mainly the greatest big sister. She’d get close to Sadie in her swing and tell her it’s was ok, and how much she loved her. Kim and Jason were overcome with exhaustion and work-related stress. I tried to offer my help and the one or two nights that I relieved them, I was shocked how Kim, Jason and Katie had adapted and adjusted to that sort of hectic lifestyle. Weeks later the withdrawals subsided and Sadie's personality emerged.

Now Sadie is into EVERYTHING. I my job at an optometrist's office and started work for Kim’s business, and was around the girls every day. Katie is growing like a wild fire and Sadie’s scream has become a well practiced, banshee-like siren noise. It's great. I can’t turn my back for 10 seconds. No- I seriously, literally mean 10 seconds. Crawling was fun... but then the walking thing happened (UGH). And if that wasn’t fun enough, teeth grew into the fun zone. Yea! Of course it couldn’t be one at a time, but 1000 at a time instead!

As they grow, so do their personalities. Goodie for me – I have Katie, who wants constant attention, but even better that I have Sadie biting me and shoving Katie to have me to her self. She makes it very clear that I am her beef jerky and NOT Katie’s. It’s an endless war.

Everyday I spend time with the kids, and everyday I learn something new. Sadie is a spit fire. If I wasn’t in love with her Tin Man “icon,” that we've chosen to represent her, I’d somehow incorporate spit and fire into the next tattoo I get.

Katie is a total mush-ball. It’s hilarious to watch her freak out and “awwww” over a dead moth. But her in-tune nature makes me daydream that she will become a veterinarian. We all have decided that Sadie will be some sort of extreme sport junkie, as she loves to play "stick the hand in the pitbull/German-shepard’s mouth" and stand on chairs. (Wise investment Kim and Jason… “but noooo, Katie wanted a puppy”!!)

It’s a never ending, extravagantly fun, fast paced house hold. Need a heart attack? Come on by for a visit!

I took the Katie and Sadie to the Dollar Store recently to buy a ton of crap that Kim will later scold and swear me for. Then I took them to the park, only for Sadie to immediately pick up handfuls of mulch and offer them to anyone within toddling distance. Katie found a friend in about .00000019 seconds and I had to laugh at them needing to scream- just because. When it was time to leave and I was putting Sadie into her car seat when she decided that “anytime’s a great time to throw a fit.” Full-fledged, screaming tantrum. Not being the Mom, I don’t smack, but often have a little “Kerinda-devil” pop onto my left shoulder and say “Go ahead, one little POP on the butt would do her good. I won’t tell!” Instead I simply smile and look at her and say “Aren’t you glad that you’re not MY kid?”

I got them home and made a bottle for Sadie to go down for a nap. She threw herself on the floor beside me, screaming, then pulled at my jeans and found the right spot to bite as she decided that I wasn’t paying enough attention to her. *Ouch.* I finally got her into the rocking chair with a bottle. Katie ran into Sadie’s room just to tell me that she loved me. She left the room and Sadie and I settled again.

Before Sadie took the bottle, she looked at me and said “Ni-nah,” her name for me. I thought to my self that I was so lucky to live near by and hardly miss a day and I didn’t think a more perfect child existed.

First Sentences!

Katie, who is almost 5 1/2, read her first full sentences without any help yesterday, which included, "The fat cat met the dog" and "No he was not!" from a currently borrowed library favorite, Drat that Fat Cat. Gotta go buy that book now. I can't believe my baby is reading!! God, they grow up fast.

CHD Awareness, check out the Children's Heart Foundation, the only group I know of that puts 100% of their efforts to funding research on congenital heart defects. They've raised 2.3 million since 1996. It seems we should be able to do more.

Social responsibility is a MAJOR marketing tool these days. Next week at the conference I'm running, one of our speakers is from Ethos and will be focusing on this very subject. I can't wait to learn more and see if we can find some ways of enticing some major companies into campaigning for CHD. Big ideas, but worth the thought.

General Update

I'm wiped out from work today... leave for Boston on Monday and have miles to go. So, today's blog is posted on the CHD awareness site. Check out Makenzy's story - she's 8, and has a sister who has CHD. Her story is very touching, and one many kids can relate to. I'll write something soon about Katie's general reactions as well, but don't have the time/desire tonight.

On the home front, I took Sadie in for what I thought was a simple ear infection today. It's not. Looks like there's something going on behind the ear drum. We're going to watch it and see what happens over the next week or so, but the dr suspects the ear drum may burst because of the pressure. Basically (gross... weak of stomach skip this), there's a lot of puss built up behind the drum, as well as tissue. The pediatrician thinks it may be another genetic anomaly that is the root of this (the tissue malformation). No one has ever mentioned it before, in the 3 times in the last 4 months we've been treated for ear infections.

Interestingly enough, he said I should sue my OB. I won't be, but it was reassuring for another doctor to tell me that I was neglected, my desire for more information was denied, and that it wasn't right. No other doctor I've talked to will admit that. We had a half hour discussion about the failure to be able to obtain insurance for Sadie, and his comments included how broken our health care system is, and how CHD is so severely overlooked - there's no "money" in it, and the children aren't old enough to vote on issues, parents overwhelmed. It was comforting to find a doctor who feels exactly as I do on the politics of healthcare, the state of the American health system and CHD awareness in general.

Anyway, the Sadie issue is wait and watch. He said tubes are likely, but that they couldn't be done right now based on what he saw. He also said he hopes and doesn't think it will affect her earing. He also mentioned it could have a lot to do with her behavioral issues as well.

Katie had an awesome day. She came home with 40 valentines from her friends, which we had to go through individually tonight. She's bouncing off the walls on a sugar high like I've never seen before. Gotta LOVE it when preschools serve sugar before sending kids home. Thanks.