My Mascot for the 10K

I've got to admit, I've been a bundle of tears the last few days. Though I knew I'd likely lose an old friend, I still held out hope for a miracle, and was unprepared for her departure. If I had to play a morbid game on what friend I would lose first in my life, I would never have chosen Amanda. She was so strong, so vibrant. Yet she is gone.

I had wanted to run in her honor this year, and was an emotional wreck Friday worried about making her proud. I wanted a way to express it, but didn't want to be gooey - she would hate that. So I made a simple tee, complete with some childhood memories - a copy of her signature from high school, symbols she'd sign off with. It was therapeutic in a way, allowing time to go through our old notes and photos and letting myself feel the loss of an old friend.

I made it through the 10k, intact with no tears. In fact, I clocked in at 1:11:43, a personal best, shaving 10 minutes off of my time last year. Much of that is thanks to my running mate, Tanya, who brought out my competitive streak and kept me going. The majority of it was because of my mascot, an angel-winged zombie warrior, who flew ahead of me in my mind, egging me through the race, making me keep my word on running in her honor. I just couldn't let her down.

I thought I may be emotional when I passed Amanda's family, waving at her husband and blowing kisses to her son. Instead it gave me a renewed energy, and helped me to push even harder, and I found slight relief from the heavy grief in my heart. Several times I had cold shivers, and would imagine it was her way of telling me she was with me. The visualizations worked and pushed me to perform to the best of my abilities.

I kept tears at bay all day until later, when I wanted to tell someone about my time. And I realized the only person I wanted to tell was no longer with us.

A Parable of Immortality

Trying to balance the grief and the joy of having been privileged to call Amanda my friend, I found myself searching poetry, looking for meaning, for an explanation of my soul's song last night. This poem was one that spoke to my heart.

"A Parable of Immortality"
– Henry van Dyke

I am standing by the seashore.
A ship at my side spreads her white sails to the morning breeze
and starts for the blue ocean.
She is an object of beauty and strength,
and I stand and watch
until at last she hangs like a speck of white cloud
just where the sun and sky come down to mingle with each other.

Then someone at my side says, 'There she goes!
Gone where? Gone from my sight - that is all.

She is just as large in mast and hull and spar
as she was when she left my side
and just as able to bear her load of living freight
to the places of destination.
Her diminished size is in me, not in her.

And just at the moment when someone at my side says,
'There she goes! ' ,
there are other eyes watching her coming,
and other voices ready to take up the glad shout :
'Here she comes!'

Happy Trails Amanda... I'll miss you.

Saturday I had planned on running in Amanda's honor. Sadly, I'll be running with her memory, instead. Tonight that young, old friend spread her wings and left me behind in the dust. Though she's been sick for a long time, the loss was still sudden, and I feel blindsided - unready to say goodbye.

I've spent all evening reading old notebooks full of our childhood scribbles. Looking through scrapbooks and photos. Wishing she were by my side to laugh with me at our antics, terrible senses of style (hers was WAY cooler than mine, even back then) and countless secret phrases about anything and everything. I can't think of what to do to memorialize her, to really say what I need to say - to cut to the heart of how much I'll miss her.

So instead, I offer up a list of my top 10 favorite moments, ones that embodied a friendship that lasted a lifetime, and will last beyond.

1. (sung to "Yesterday" by McCartney) "Leprosy... all my skin is falling off of me... I'm not half the man I used to be, oh I can't live, with leprosy" - Our response to the demand for a church camp skit.
2. Stupid elevator games, to freak people out.
3. The one and only movie I've ever walked out of - The crying game. We bolted after a few scenes and headed for another theater.
4. Convincing my parents The Cure was a Christian rock band so that I could go to the concert with her. A lie I'll never regret (sorry Mom).
5. Amanda and Adrian's wedding. Never in my years of friendship had I seen Amanda so happy. To this day, I've never seen another couple so well matched, so in love, so perfect for each other. My heart aches for his loss.
6. Singing a duet to "Our God" - man I thought we rocked on harmonizing that. I used to get goosebumps over how good we were. Ha! (Amanda was a great singer, I was not). I still think of her when the TV commercials for "inspirational" songs come on with that tune.
   
7. Inscribing our memories into the rafters at the top of the girls' bathroom at our camp. I need to take a trip out there to see if they're still there. Although it would kill me if they weren't.
8. Fruit Loop Prostitute and Honeycomb Hooker. I won't bother to explain.
   
9. Skipping out to 7-11 for Blueberry New York Seltzers. I think the two of us alone should have been enough to keep the brand alive.
10. Alastair... her legacy. Sharing pregnancy stories, birthin' fun and mommy pride.
    

There are so many more. Almost 20 years worth of friendship can't be caught in ten bullet points. But I'm overflowing with emotion right now, so this will suffice.

See ya in Wonderland, Alice. I'm going to miss you.

Kid News

Because you care...

Sadie's officially potty trained - hooray! She's made it two days with only accidents while sleeping (actually, no accidents today). It only took about two months of potty requests every 30 minutes or so. Piece of cake (ha!).

Sadie's latest bed time routine is to force Jason or I to lie in bed with her and "tuddle". She gives kisses and hugs, pecks on the nose, strokes our hair and sometimes sings "Tinkle Tinkle Wittle Star" or "Some-whayw Ober da Rainbow". Then she turns over and says "I'm done sleeping with you," which is your clue to get out of the toddler bed you just folded yourself into and leave.

Soccer's back in season! Katie's on a team with two of her favorite friends this year - both boys. Already she's playing better than last year, and loving her team. Last year our team had a whiner or two, which quickly became a cancer in the group - all the kids whined and cried throughout the season. Day one of practice, and they were rockin' and rolling this year. We switched over to Dynamo from Richmond Strikers, and love the organization and direction they offer. Big change - for the better.

Katie has apparently inherited my entrepreneur gene. She's started a club for kids her age, which she designed herself. She wants it to "be fun at first, then maybe someday she'll have lots of them and make money like you[I] do." Poor thing - if only she knew how little I made from my endeavors she'd run screaming the other way.

Equal Exchange Fundraiser for Three Oaks

OK, shameless plug here.

Three Oaks Montessori (our little preschool) is hosting it's first ever fundraiser through Equal Exchange, a fair-trade cooperative that creates a direct, transparent food system that empowers small-scale farming communities throughout the world. In a world full of Walmart distribution and ownership, small-scale, local and organic farmers struggle to compete. Our students learned about the continents this past month, tying in the theme with our fundraiser.

So, if you'd like to buy any items, we have the following for sale. I've sampled most, and can vouch for them (especially the cranberries, coffee and chocolate) - they are outstanding!

5 oz Cranberries
Whole, juicy cranberries infused with organic sugar and slowly kiln-dried to preserve every last bit of flavor. $ 7.

5 oz Pecans
Plump pecans are perfectly roasted and salted to bring out their full flavor characteristics. $7.

Organic Green Tea, 25 bags per box
A healthy and invigorating tea made from premium unfermented Darjeeling tea. Popular for its antioxidant qualities and low level of caffeine. $4.

Coffee, Organic Mind, Body & Soul
Medium & Vienna Roast, 12 oz. A smooth blend with mild acidity and characteristics reminiscent of dark chocolate. $10.

Only a few items remain of each, so they're first come, first served. Thanks for any interest, and sorry for the commercial!

Birthday Fun

Sunday was my birthday, and it was one of my best (at least Saturday night was!). My sister planned an awesome little surprise party, full of some of my favorite people. I had a blast hanging out, visiting with friends and just letting loose. So much fun, in fact, that I woke up Sunday feeling a bit blue that it was over so quickly.

The past year was one of my toughest in so many ways. I took risks that didn't pay off, stuck around when I should have walked away. Ran away when I should have clung on. Made more mistakes than may seem humanly possible, yet learned more about myself and why I'm here. I'm not sure where I'll end up from all the experiences, but feel forces of change working in me to open up parts of me that have been dormant for years. Nothing like a good kick in the butt to get you to re-examine your path in life, I guess. And a few good self-help books to get you back on the right track. Blah, blah, I'll stop now.

So, another year under the belt. I look forward to the year ahead with both excitement and trepidation. There are a lot of changes in the months ahead (aren't there always?). I'm not ready to talk about them, but suffice it to say I'm hanging on for the ride of a lifetime. Great things are in the works, some things are complete unknowns and others are ripe with emotion. I can't even write or verbalize at the moment, so if I seem distant, please bear with me. I'll be back in time.

Snow Much Fun!

Look Mommy - SNOW!

Yipee!!!!

Our backyard the next morning - we woke up to 9" of snow.
Carly Sparkles Crystal loved jumping through the drifts.

Don't let the smile fool you. Sadie loved the deep snow for about 10 seconds. Then she erupted in nonstop screams all day - the snow was so deep that it came almost to her waist. Every time she fell she couldn't get back up. She was like a turtle turned over on its shell - except much, much louder.

Time for some sledding fun!

Katie the snowgirl.

Why one should not use blowpops for a short snowman's eyes.

Our Snowman 09 - go Hokies!!

Over the past three days we've sledded, had snow ball fights, drank at least a gallon of hot cocoa and built the best snow woman (Katie insisted) ever. I'm exhausted, but in that warm, fuzzy good way that comes from too much outdoor fun!

Hooray for Second Opinions!

Today was specialist day - first the cardiologist for Sadie, followed immediately by ENT/plastic surgery for Katie. For the first time in a long time I can say that both went fantastically!

After a lot of deliberation (2 1/2 years worth, to be exact) I finally took the plunge in switching cardiologists. I had a certain amount of sentimental attachment to our previous pediatric cardiologist simply because of the road we had gone down together. That said, he often was abrupt, failed to provide the full picture and belittled my questions. He's a great doctor, but just not the right fit for us. So, we moved on to Dr. Allen with the MCV group today. What a big difference!

Dr. Allen spent time reviewing Sadie's case, clarifying some muddy areas for us and talking about her recent blue spells. It turns out it's fairly normal, and a benign condition. She's just one of those kids that do this - not because of her heart issue. Her heart, he declared, is beautiful - a prime example of one of the best switch operations he's seen. Her anatomy was such that it made the switch an "easy" (if there is such thing!) operation, and he thought Dr. Peeler, her surgeon, had done an outstanding job. All good news! I was shocked with the amount of time he spent with us in reviewing her history and today's echo. Kristen, you're right, LOVE him! Thanks to all my heart friends who recommended the switch. I felt a bit like a "cheater," but after today's experience know I made the right decision. The sum up for the visit? Sadie's heart healthy and raring to go!

After dropping off Sadie at Three Oaks and picking up Katie from her school, we headed over to the ENT office for a second look at the bump on her face. I hadn't been satisfied with the "we think it's this" answer I got previously, and was not at ALL satisfied with "anyone can perform the surgery." I love the doctor who told us these things, but couldn't rest easy with either answer. So, we asked one of his colleagues who is an ENT and Plastic Surgeon (Dr. Burke) to take a look and possibly perform the surgery. One look, and the charming (did I mention British accent?!) Dr. Burke felt it is not pilomatrixoma. Based on the lab pathology, texture and appearance, he thinks it may be an infection of the lymph nodes caused, possibly, by MAC (which is neither a virus or bacterial infection). We're going to take the less invasive approach of doing up to four weeks of a different antibiotic to see what happens. He was hesitant to perform surgery on the location due to it's proximity (or possible location of) the salivatory glands and lymph nodes.

Slowly I'm becoming a more educated advocate for my kids. I'm realizing I don't have to run home and look up words that weren't explained (I can ask), and that I don't have to trust the first opinion I get. It was harder to get to that point than I realized - I think, though I like to believe otherwise, that I have a really tough time with change. I didn't want to hurt either physician's feelings or imply that they were wrong - yet if I hadn't taken that leap we'd be in surgery on Monday and I'd be worried to death with Sadie's every sign of cyanosis. Progress, baby. Progress!

The results are in...

Katie's biopsy results came in last week. Over the phone the nurse told us that the results showed a benign growth, but that an appointment with our doctor would be needed for further discussion. So I pretty much knew what was coming when we got to the ENT's office this afternoon.

I guess I haven't previously posted what's going on with her. She had a red bump appear on the side of her face in early November... her pediatrician noticed it and asked about it. I had seen it too, and assumed it was a pimple or bug bite. Then I noticed a small black "spot" in the center of it - barely a speck. December was a whirlwind, but I noted that the bump began to change, turning purplish-red. The pediatrician put her on antibiotics to get rid of whatever the culprit was (and at the same time kill the strep she was in that month for). Late December came and the bump was more pronounced and the pediatricians referred us to an ENT. The ENT took one look and sent us for a biopsy - he said he frankly had no idea what it was.

The good news is that the infected-looking nodule on the side of Katie's face is not malignant, however it is a tumor. They suspect it's a case of pilomatrixoma, a tumor "composed of cells resembling those of the hair matrix, which undergo 'mummification' and may calcify." It doesn't look quite like what our doctor has seen and it's developed rather quickly, but he's young, so I take that with a grain of salt. I'm beginning to get used to being the screwballs with the "rare" presenting case.

Dr. Sally was wonderful in talking to us at a level that was over her head when needed, but at her level for what she needed to know. He made one fatal error though - he said "operation" instead of "excision" at one point in the conversation. Katie was a ball of nerves from that point on, breaking down into tears the moment he left the room.

I don't think any kids are thrilled about the prospect of an operation, even a "minor" one such as this. Katie, however, is terrified of them. One has to remember her short little life's experiences with operations and the scars they left, the stress on the person and those around them, etc.

As a parent one never knows the right way to comfort kids. In this case, I just let go and let her get it out. We've been talking about it all night. Really, it's not a major surgery - it's minor in the grand scheme of all thing surgical. In fact, I'm thinking it might be outpatient, but I'm unsure as it does require full anesthesia. But for Katie it's scary as hell, so I'm working on validating her feelings but at the same time educating her on what, exactly, will happen and how very different it is from her frames of reference. I'm sure to screw her up somehow, but I hope it's not on this one.

I think I need to sell our story. Our freaky health cases are at least good enough for an episode or two (or three) of House.

OK my medical-world friends, I have a quest for you. I asked the doc where the best place to go for her surgery was, and he said it didn't matter, anyone could do this - scarring would occur no matter who does it, but it will be a small one (1 inch or so I think). Still, I've learned not to trust doctors on their referrals or lack thereof. I trust my friends who've been through these things much more. Suggestions? Anywhere/one I should avoid?

Counting Out Change

I was at Hallmark this morning, getting a last minute card, rushing through the motions of a commercial holiday I'm not a huge fan of. I got into line to pay, seconds behind an elderly man.

He placed a single card on the counter. "This is for my true love," he said to the cashier with a wink. "Today is our anniversary!" The cashier asked the obligatory "how many years?"

Seventy one.

He pulled change out of his pocket, and began to count it. As he did he mentioned that time went too fast. Next week they are moving into a retirement home. Things changed, but one thing remained the same, their love.

Tears filled my eyes when he looked at me and smiled his little old crooked smile and wished me a happy Valentines.

I got in the car and drove away, trying to hold back tears for so many reasons. I wished I'd asked him more. I wanted to know his life story. I imagined their moving through the times, life.

But most of all, I thought of the change he used - mostly nickels and dimes, to pay for that Hallmark card. One by one, adding them slowly as I took in the moment. Now that, my friends, was a Valentine to remember.

Happy Heart day!

C'mon... enough already!

Sadie's still not up to par. We're trying to get her into a new cardiologist ASAP.

Tonight we had plans to have dinner with some friends. On the way out the door Katie let it known that she has contracted the stomach bug going around her school. Poor thing has thrown up 7 times in 6 hours.

Really, the sick stuff is enough. I'm SOOO ready for spring!

I'll have to back post some CHD-related items later... too worn out tonight.

Double Guessing Yourself

It's funny the timing of things...

When my kids get sick, I have a tough time gauging how really sick they are. If there's a fever, I usually take them into their pediatrician for a look. I often feel like a hypochondriac. What can I say, I've developed a distrust of the medical community in general, which has been combined with my tendancy to worry. With reason (Sadie's many medical mishaps and oversights, Jason's recent brush with death), I know, but a worrier none the less.

There's a flip side to that. Being a rational person and recognizing the current stress levels and prior experience, I often discount my gut and ignore symptoms until situations escalate further than they should.

The past 6-8 weeks is a great example of what I'm talking about. The experience at the hospital with Jason left me feeling I couldn't trust the simple diagnosis any longer. I ended up taking Sadie in a few days after his initial visit - to the ER no less - because she had 5 or so similar symptoms to his presenting illness. Her pulse ox then was around 94. They said it was likely because she has a heart defect and had been sick. I dismissed the episode of being one of neurosis and exhaustion.

The kicker is, Sadie hasn't really been well since that time. She's been OK, still full of spunk, but not quite at full steam. She's had several episodes of labored breathing, but in conjunction with a cold, congestion or a nasty cough. She just hasn't seemed to shake it. I've noted three seperate times that her nailbeds were a bit bluish. I chalked it up to her coughing and congestion. I thought perhaps it was pneumonia, it wasn't. Bronchitis, nope. I had lots of ideas, but never once allowed myself to think about the heart as being part of the issue. Yet, inside, I've been in turmoil, worried that something bigger is being missed. I tell myself it's because I'm surrounded by CHD-related things right now, and over vigilent with her. T

Today was visit #6 in 3 weeks for Sadie to the doctor. We saw one of our favorites, and she took a lot of time, checking her pulse ox, listening to her heart and lung function, asking the right questions. She felt Sadie was, indeed, experiencing periods of cyanosis ("blue" syndrome - when the body doesn't oxygenate as well as it should. Which shouldn't be happening based on her reports from the cardiologist. (Guess who's switching cardiologists after we're over this hump?)

An uneducated guess is that perhaps Sadie's pulmonary hypertension was never really resolved as her cardiologist told us over two years ago (without checking for further symptoms no less). I always ask for her doctors to check at her pulse ox at well visits (it's a simple, fast and "free" test), and usually it's 98-100, but when she's ill, it easily drops to lower 90s. If she's really sick, it's in the upper 80s.

I know it's nothing "serious" compared to the many challenges some of my friends face. I feel silly, to be honest, when I worry about Sadie's heart. My heart friends have children who on a GOOD day are in the upper 80s for sats. So I have a hard time feeling urgency with my child, who is often called "fixed" in the CHD community.

I feel like this is a bit of a push from above. A reminder that I'm on the right track in working to create some change for CHD patients and their families. And an even more poignant reminder to trust my instincts as a parent. To calm the brain, and let the gut do the talking when it comes to their healthcare.

Side note - I really missed Lobby Day today!

CHD Awareness Week Day 2, 2009

I'm totally bummed I can't make it out to CHD Lobby Day tomorrow. Sadie's got something that looks a lot like pneumonia, PLUS my lead teacher is sick at the school. Feeling a bit blue about it.

Check out yesterday's CHD Blog entry if you haven't. It's by a friend, Josie, (5 Minutes is the title) and it's amazing. If you're a parent who's ever been through a life-death situation with a child, you will totally relate.

That's all I've got in me tonight. I've got my mind on lots of people who need support and energy for tomorrow - the Reynolds family (daughter Charlotte, 3, has brain tumor) and my friend Christy and yet another big appointment for Harlie tomorrow. Send some good mojo their way.

Awareness Week

It's CHD Awareness Week again! In the past year I've met many heart patients and parents, medical staff and support groups, many of whom I know will be lifelong friends. I created the CHD Blog (check out today's entry - an amazing post by my friend Josie!) as a neutral information dissemination tool, and it's really taken off. But I wanted to do more.

This time last year I, for the life of me, could not understand why there were such paltry efforts at a national awareness campaign. I didn't get why there were so many groups, with animosity between some.

Well, now I know. I jumped in full steam last year, volunteering with a variety of groups, testing the waters to find out who was out there, what they were doing and how I could help. I worked on national efforts for cohesion and strength within the groups. I spent a lot of time trying to mend fences and bring people together. I spent even more time behind the scenes working on projects that no one else had "time" to address. And in the end, after all the work put in, I threw my hands up in frustration and stepped back away from most of the groups I'd so willingly jumped in to help. Why? What caused me to back away from something I feel so strongly about?

I've been asking myself that very question. And I think I hit upon the answer My efforts last year didn't amount to a hill of beans in the bigger picture. In the process of giving my time and energy, I encountered many negative people who diverted my attention from the reason I'm working so hard at this. And in that, momentum was lost. I wonder how many others have walked that same path - I know I'm not alone.

And so this year, I'm readjusting my focus. My pledge for the next year is to find new and innovative ways to contribute. To surround myself with positive and hopeful heart warriors like myself and to ensure that my efforts are more guided and focused, really targeting and impacting the need for awareness, which in turn will lead to greater advocacy in the health and government systems and stronger research funding. I think I'm on the right path, and feel good about that.

As with last year, I'll be posting an entry every day, CHD related, during CHD Awareness Week. This year will be a bit different from last - no long lists, no big plans. Just open talk and interesting articles about life with CHD. And to kick off the week, I'd like to share a video that's been circulating lately...

She's a Dancing Machine

After a week of fighting a mutant virus and a not-so-fun biopsy today, Katie was granted the privilege to do anything she wanted tonight. I braced myself for shoe shopping, a horrid children's movie or dinner at the dreaded CiCi's, but her request surprised me. An at-home dance party followed by ice cream sundaes. This, I could happily provide.

But, as the evening wore on, I wore down. It was a long day, week, month. I just didn't feel like dancing. I knew I had to follow through though, so after dinner we went about our preparations - moving all the furniture out of the way to make room for our disco arena. The music came on. Sadie broke out some smooth new moves she's acquired of late. Katie astonished me with knowing a large portion of "867-5309" (really, she barely knows her own phone number!). And I found myself in stitches, working the grocery cart, getting jiggy with the cabbage patch and doing some ad hoc instruction on grapevine basics (hilarious with a two-year old).

It didn't take long to wear everyone out. The girls created their own sundaes, complete with everything from Magic Shell to whipped cream and sprinkles. Then we all collapsed and watched some Tom and Jerry reruns, getting in a few tickle fights and some cuddling before bed.

Really, does life get any better than this?

And so, my first real resolution of the new year... - Dance, Dance, Dance!

Blog Interview...

A week or so ago, I was offered a chance to participate in The Blogger Interview, and took the challenge laid down by Steve (the awesome co-blogger at The CHD Blog) on Adventures of a Funky Heart. Now it's my turn to paste here and offer someone else the chance to get in on the fun! This one is heavy on the CHD side... I'm gearing up for CHD Awareness week (Feb 7-14!). Your interview could be about anything...!

The rules: The interview(er) (me) gets to ask you five questions. You answer, I post it on my blog. You also post on your blog, FaceBook or wherever, and become the interviewee for another friend/colleague. Who wants an interview? I can do some creative questioning!! ;)

Were you a blogger before you created the CHD Blog?

Yes, I have a personal blog, Herding Cats, that I created immediately after my daughter was diagnosed with a CHD. The hospital I was at didn’t tell me about Caring Bridge or CarePages, so I winged it - I created a blog to keep family and friends informed. It was a great way to vent, to organize my thoughts and to share news without having to repeat myself. Since then, it’s grown into a sounding board and a way to stay in touch with friends and family outside my immediate area. I started and just can’t stop! It’s the cheapest form of therapy I’ve found to date.

The CHD Blog was born last year on a whim. I realized only a couple of weeks before February that there was a CHD awareness week. I wanted to do something. When my daughter was diagnosed, I felt alone in a vast sea… even the Internet couldn’t provide the answers I craved. The connections I wanted. Or a quick resource to get the information I needed. I thought that perhaps a portal could be created that was not affiliated with any organization, completely (or mostly) unbiased and for the general public’s consumption. That’s why the CHD Blog was born.

What have you learned from other Heart Moms and Dads?

I’ve learned how to advocate for my child. Coming into the world of acute care for the first time, I still held the ancient belief that the medical community knew much more than I did. While they do know more about specific diseases, organs, etc., they do not know my children. Only I can truly advocate for their needs.

I’ve also gained a support network I never knew I needed. I’m not much one for “support groups.” I don’t like group activities per se. Yet I have met incredible men and women both virtually and in person that have walked down similar paths. It’s hard to relate all of your feelings about “that” road we parents (or you patients) have been down. I didn’t even realize many of the emotions I harbored. Having friends that have walked similar paths in life really does make a difference.

What’s a routine day around your house like?

Honestly? Loosely organized chaos. I own a Montessori preschool, as well as an association management firm. I manage two full time clients (their accounting, marketing, public relations, event planning, administration, etc., etc.). I am married, have two daughters (six and two), two dogs, two guinea pigs and somewhere around 30 fish to care for. My day starts somewhere around 5:30 and ends somewhere around 1-ish. I spend some time in the preschool, a lot of time behind the computer or phone working with scientists and business professionals around the world, try to make sure to have some one-on-one time with my girls, and try to cram some volunteer work (usually CHD related) into the few remaining hours of my day.

Describe the moment that your doctor told you that your daughter had a heart defect?

It was a moment of pure, unadulterated shock. We knew something was wrong, but had thought it was minor at best. As the doctor drew a crude drawing of a heart on a napkin, his hand was shaking. He would not look me in the eye as he discussed her emergency intubation, that she needed to be medivaced out immediately, that surgery was her only option, and it was dire that intervention happened immediately. Until that moment, I had never even fathomed the possibility of a heart defect. I didn’t even know what CHD was.

In that moment, I asked stupid questions. One of the first, which I still cringe at, was if she would have open heart surgery, and if there would be a scar. Well, yes, dummy. What a stupidly naive question, so irrelevant to the life and death situation we were in. But I couldn’t connect the dots. I’d just had my daughter a few hours before, only 7 minutes after flying through the ER doors. And now they were telling me she was struggling for her life. I hadn’t had time to hold her. I hadn’t even really seen her. It was all just too much to take in.

After a long night of trying to wrap my mind around the situation and my reaction, I decided to change immediately how I was dealing with the trauma. I refused to let myself go down that “shocked” road again. My mode of operation since has been to push all emotions aside and to get analytical and realistic when faced with life-death situations. Of course, there are a lot of drawbacks to ignoring emotions and refusing to allow shock to take over - it only gives them opportunity to fester and grow, and it’s often ugly to deal with their neglected mutations after the emergency has passed. But it has helped me to become a better advocate in traumatic situations. Some people comment on this being a strength, but in fact it is not. It’s a total weakness - I admire other parents and patients that can cope with the emotional aspects of medical trauma while it is in progress.

What is your wish for your daughter?

That technology is always ahead of her in terms of treatment and her medical needs. That she lives a full and happy life. And that she never doubts for a second how much I love her. (Both of them!)

Chin up!

I saw a great quote today, on a message board for some acquaintances whose little girl was just diagnosed with brain cancer last week.

LIFE ISN'T ABOUT WAITING FOR THE STORM TO PASS...
.....IT'S LEARNING HOW TO DANCE IN THE RAIN !

Sure, it's been used before, but for some reason, it really stuck today. And so, on that note, I'm resetting my mental framework officially, back to the present. I won't lie, I took a bit of a nose dive for a few weeks, but I'm over the hump and looking up.

And I'll begin by bragging about my kids a bit. You KNOW you want to hear it.

Katie's doing AWESOME with math. Amy, our teacher at Three Oaks, just moved her onto multiplication today. My Kindergartener is multiplying. How cool is that?! Further confirmation that my daughter is brilliant and that the Montessori method of teaching rocks. Katie LOVES her math work, and is so very proud of herself.

And Sadie is now talking in complete sentences. Just three short months ago I was worried about developmental delays with language, and now she is going off the charts verbally. She's very hard to understand, but works really hard to properly enunciate her words. Today she was sitting beside a little boy, rubbing his back as he worked (she's very touchy/feely). He looked up at me and said "She really loves me, you know." "Yes," she said, "I love him." And it begins...

Jason managed to get one more week squeezed out of his job, so that was a good thing. His last day is Friday, but he's confident he'll find something soon. He's got an interview next week (not for a specific job, with a recruiting agency), so hopefully that will open some doors.

And as for me, I relinquished quite a bit of the added stress I'd taken on with some volunteer efforts the last few months. I realized that the work I was doing was important, but not so much so that my mental and physical health should be put at stake (this realization came to me in the middle of the night as I lay shivering in bed with the flu over the weekend, while entering data for that volunteer work). I was pushed to my limits with a few negative people, and decided to exit stage left. And I feel good about it. I'm going to ensure the transition is a smooth one, and that my efforts don't go to waste, then I'm drawing the curtain on that portion of life for a while. I need to stop and breathe, spend time with the girls and reconnect with my friends.

Running for 'Manda

It's that time of year again - Ukrop's 10K time! This year I will be running in honor of my long-time friend, Amanda, who continues to fight leukemia. Last year I ran for the first time, in her place. It was the day that she began to discover what her diagnosis was, after a series of strange illnesses. This year I want to get a better time by at least five minutes, and to make her proud.

Anyway, I'm in the process of forming a team - temporarily called Team Amanda. Let me know if you're interested! We won't necessarily run the race together, but we'll meet up afterwards, party and add back some of the calories lost, and toast to the Great Amanda. I'm hoping Amanda will be able to join in the affair, but we'll have to see what is going on with her health and scheduling.

As our mascot and motivation, I'm also hoping to find a time for a little kick-off shindig (if we can fit it into her crazy treatment/health/upcoming travel schedule). Let's get out there and show her we love her, pound some pavement and make her proud!!

One step forward, two steps back...

Life was beginning to turn a bit closer to our average shade of normal last week. Jason's feeling better and pretty much back together from all his medical drama. Sadie's mellowing a bit after weeks of tantrums. Katie was happy to have rediscovered the joy of the school routine. And I got back up off the couch after two days of sick/exhaustion and got back into life.

Then the newest fun hit. Jason has become another victim of the economic downturn. As of Friday, he will be unemployed. If you know of anyone looking for a brand manager, let him know.

And so, the fun continues. I'm stressing in a weird, detached way. I know life will continue, and that we'll either make it or we won't financially, and that there's nothing we can do except search for opportunities. I've been struggling with a decision as to whether or not to continue in association management (the pay is abysmal in a small firm like mine), so I, too, will be on the market. Of course I have the school to contend with too. But I don't get paid to work there (breaking even is finally happening), so I can't hold my hopes on that to grow fast enough to support our family. I'm on the lookout for graphic design and writing freelance stuff to help fill in the gaps. You know, when I'm not working on my two companies or two clients...

OK, it's not all dreary here. Katie and Sadie are both in super fun stages right now. Katie has really taken off with her reading, which is a lot of fun (though it sucks that I can't get away with spelling things out in front of her anymore - time to break that habit). Sadie suddenly became a talking machine and talks, nonstop, day and night. I love her singing - she's quite the diva. My favorite goes something like this... "Fossy Snowman! Joll-ee Sowelll!"

Anyway, onward and upward. I'm hoping this "setback" is actually a sign of something bigger on the horizon!

Not so tough, are ya?!

During the past two weeks, a lot of people have told me I am strong. I want to set the record straight. I am NOT strong. My nerves are raw and my emotions are on edge. I've cried the past two days over multiple things, big and small. I'm exhausted and, dare I admit, feeling a tad blue. I know, I shouldn't be. I have a lot to be thankful for. But there it is, I said it - I'm weak.

I know that the "you're so strong!" comments are meant in sincerity, and as a compliment. I do appreciate the votes of confidence. But the "me" that comes out on this keyboard or chit chats on the phone is far from the deeper "me" that is curled up in the recesses of my brain in a fetal position, rocking away, rocking away...

For some reason our family got hit by two major medical traumas in two short years. And I had a front row seat both times. When you're thrown into something like that, you don't HAVE a choice but to hold it together and "stay strong." But I'll tell you, the minute it's all over with, I, for one, go to pieces.

So, I disappeared the last few days from humanity. I spiked a nice fever at 102 the day after Jason was released from the hospital, and two days later, when it went away, I was left feeling more exhausted than I ever remember feeling before. The adrenaline that kept me going during crisis mode has long since gone, leaving behind a worn-out, stressed-out mess in its wake. I was home with the kids and Jason for what felt like an eon, leaving only for doctors appointments and must-have Target trips. I answered the door in pajamas. I didn't bathe for two days at a time. Thank goodness for our friends in the local Mended Little Hearts, who were so kind to bring food by for our family this past week. I had no presence of mind to cook, clean or do anything beyond caring for the kids and Jason (when allowed - he's rather irritable on all those steroids). I pretty much fell to pieces.

Tomorrow things start up again. The girls are back to school, our preschool is again open, and my consulting business is back in full-swing, gearing up for tax season. Jason goes back to work, as well, though he's still not quite back to his normal self (he's dying to go back to work - that right there is an indicator that something still isn't quite right).

I'm ready to move on, too. To pick up the pieces and get life back in order. Tomorrow is a new day, in a new year that I KNOW holds great things! I just need to pull it together, get up off the couch and get back in the game.