For those that don't know, Charlotte Reynolds, a 4-year old child and honorary student at Three Oaks Montessori School, has a terminal brain tumor. In fact, she is in her final days. I, and our entire community, feel heartbroken.
The memorial reception is my planning area, and I'm hoping some of you may be willing to help by volunteering time, resources or financial assistance in the next week or two.
Specific volunteer needs:
- Set up before/during memorial service
- Craft table management
- Serving/food table help
- Manning a large chocolate fountain (to be found)
- Balloon logistics (looking for eco friendly balloon release options - please send ideas!)
I'm also looking for donations (financial or in kind) for the following:
- Socks (100 pairs of new, long socks for therapeutic puppets the kids will make during the reception)
- Sewing notions (buttons, thread, things to glue on sock puppets)
- Chocolate fountain - the biggest one we can find
- snowman craft items
- Scrapbooking materials (any and all - especially purple or pink)
- Butterfly wings (child costume ones) - purple and/or pink only please
- purple and/or pink plates, utensils, cups
- 1,000 eco-friendly balloons or other optional eco-friendly release item
- potluck style food items - with a whimsical twist (butterflies, pink and purple)
- Monetary donations for the supplies we can't get donated
- And other stuff will come up, I'm sure.
I know I've got the best network of friends, family and lurkers possible. Thank you for your support of me and my family during our trying times. I hope all of you anonymous angels out there will be willing to help this family as well. Please email me directly (or leave a comment here) if you want to help.
- Kim
This December has been pretty tough. There are a lot of emotions running high around here, for a lot of different reasons. Through it all I'm continually reminded how blessed I am with my girls, my home, my life in general. But sometimes the most poignant reminders are the ones that hit you hardest in the gut - things like terminal cancer, major life changes, sick kids.
So, I'm a recluse at the moment from the blogosphere. My heart is too heavy (and my mind is too busy trying to process everything) for writing right now.
The new year is just around the corner, and I hope by then I'll be more clear minded and able to write. Until then, the girls are great, Santa was overly generous (even to the tantrum queen) and I'm anxiously awaiting the changes coming in the new year!
I feel like I'm going through many seasons at the moment - rebirth and spring, death and fall, my summer years and some dark winter nights are co-mingling all at once in a huge force of change in my life.
After 7 years of business ownership, I'll be stepping away from association management and eventually school ownership and taking on a new role as a business analyst (essentially what I was already doing) at a consulting firm in Richmond. It means leaving behind the flexible, at-home schedule, which I have so many mixed feelings about, but the benefits are outstanding, it's what I've dreamed of doing, and where I want to go. I haven't got all the details yet, but I'm almost afraid to pinch myself - I wanted this job, needed the change, more than anyone can ever imagine.
It seems like there have been so many goodbyes this year. Friends, relationships, clients, my favorite pet ever, fleeting childhood moments with the girls. But it's been a good year, too, and there's so much to look forward as we settle in for the long winter months ahead. I can't wait to see what will emerge this spring from all the changes that transpired over the past year.
OK, someone tell me how to handle a tantruming three year old. Please. Because I have NO. FRIGGIN. CLUE.
As a Montessori mom, I use the 'choices' approach to help stave off about 50% of the tantrums. But some days Sadie has already escalated well out of the realm of reasonable discussion.
So I remove her from the situation if I can. Try to talk about using a calm body and kind words. But sometimes she's already over that, too.
So she kicks, screams, scratches, tears things apart, throws things, etc. And if we get to that point, well, it's going to be at least 20 minutes before she can calm herself.
A friend was here today and witnessed what transpires first hand. Sadie hit her daughter in the head with a toy, several times. When I called her over to speak to me, she refused to budge. I went to her, knelt to her level and said, "we do not hit our friends with toys, it hurts." To which she replied, "I know" and made a face. I replied, "if we hurt our friends it makes them sad, so we need to apologize to help them feel better. We don't want to hurt our friends, do we?" To which she replied, "yes I do. She's stupid." Stupid, you see, is the worst word she knows... at least at this point. It's like a curse word in our home.
So I gave a choice, we could go over and apologize to the friend and play nicely, or we could go sit down and calm down. And the screaming began. Not a "wah" but a high pitched, ear pearcing scream. I told her that "screaming is not nice, it hurts my ears, it hurts all of our ears. You need to use your words so that we understand what you want to tell us." Yeah, no effect. So another choice was given, stop screaming and use words to talk to me about how she was feeling, or go upstairs. And a hit flew. And I scooped her up, went upstairs to her room and put her on the bed.
Again the conversation about using words. She's kicking, screaming, throwing things, so obviously, no more conversing at this point. I tell her that if she continues to throw things, I will have to hold her until she calms so she doesn't break anything or hurt herself or me. It escalates. I hold her. She bites, screams. Twenty minutes pass. No dice. I put her down several times during that time, each time to get assaulted. At this point I'm wondering if my friend has left. I wouldn't blame her if she had.
Sadie calms enough, finally, to say she wants to go downstairs. I say sure, if she can use a calm body and quiet voice. She starts down the stairs, and the wails start up before we're half way down. Full blown crying again at the bottom of the stairs. Again, the choice to remain calm downstairs, or go back up. She chooses screaming. We go back up.
During this, my friend is downstairs. She's pregnant, otherwise I would have hooked her up to an IV of alcohol to help with the pain being inflicted by Sadie's wails (mentally and physically). I ask her in frustration if she has any ideas. She said sure, put her in the room and walk out. Let her tear it up. Then she has to clean it up after. Take out any special items you do not want broken. And so, at wits end, I do that. And I close the door, go to the other side, and sit against it so she can not get out. She breaks a part of the door banging and wailing. I sit and cry. My friend leaves. 40 more minutes pass. Finally she calms.
So, my question. How the heck do you deal with a kid like this? How do you a) keep it from escalating to that level and b) calm a child once he/she is a full blown tantrum? I've searched the internet, and books, and asked some friends of toddlers. They give me advice on avoiding the situation, but not one resource can tell me how to deal with it once it happens.
I'm beginning to wonder if there's a behavioral problem. My friend today admitted she'd never seen anything like this. I tell people all the time about the difficulties, but few have witnessed the full blown Sadie Tantrum. I need Nanny 911!!!!
Sadie has been home all week with the dreaded piggy poo... feverish, some congestion, but otherwise content to sit beside me, cuddled up watching movies while I work away on the laptop. She does, however, get 10 minute bursts of energy, and in these periods I've observed something new. The emergence of the Imaginary Friend (IF).
I do not know the friend's name yet. But this new friend is very, very funny. It often leaves her in tears from laughter, and wants to play baby at least a dozen times a day. IF is apparently part dog/part human as it loves to "tuddle" and seems to be quite small. It is also very complimentary, because Sadie keeps telling it "thank you" and "you are a very nice friend."
Katie never had an imaginary friend, so this is all new to me. It's hilarious to observe, and gives a bigger peek into Sadie's psyche and personality. And she keeps me in stitches. Right now IF and she are having a jumping contest. Next they're taking a bath and will be SuperDog and BatDog.
The Montessorian in me kind of cringes, but the artist in me applauds this new development. I see no harm in the behavior for now - it's simply a buddy to play with, which, frankly, is a welcome diversion at the moment.
A little girl that is part of our community at Three Oaks has an aggressive brain tumor. This tough little 4-year old gal has gone through three surgeries, countless rounds of chemo, and now has no more options. It's a devastating situation for her family, but in the midst of crisis they are turning toward hope - hope for a legacy, for helping others and for healing.
Meet CJ's TUF - CJ's Thumbs Up Foundation. It's a new nonprofit that is kicking off its start this Friday, and I hope you'll be come a fan (see the badge on the right side of my blog, or find it on FaceBook). The family hopes to reach 5000 fans by the end of the year. What a great way to show them support, and what a difference this organization will make in years to come.
The organization will provide financial assistance for families in medical crisis, regardless of diagnosis. As a mom who's been down that path, I can't tell you how much that is needed. Whether your family is eeking by or you're middle to upper class, medical crisis hits your pocketbook hard. The hotel stays, travel for treatment, cost of non-insured items, consultations and treatments... it adds up quickly. I'll never forget the 100k bill I received days before Sadie's open heart surgery - it was a kick in the gut when I was already down for the count.
This organization will help families at this pivotal juncture. For a long time I've been looking for the right nonprofit to put myself behind to assist with families with sick children, and I think this may just be it. I'm excited to see it get off the ground, and hopeful for the difference it will make in our community. I hope you will be too, and encourage you to become a fan, become an advocate and become part of little Charlotte's legacy.
Twelve years ago, Jason and I were newlyweds and, like many, desperately wanted a puppy to test out our future parenting skills on. I somehow found an old lady who rescued young motherless pups, nursed them to health, then found homes for them. We went out to see what she had, and were taken by a group of Cocker Spaniel mix puppies. The fattest one we saw did not match her brothers and sisters, who were black and looked like purebred cocker pups. This little girl was tan, looked more like a hound, and wriggled her way to the top, taking us immediately with her big brown eyes, puppy kisses and cuteness. A week later she was weaned and I rode home with her in my lap. We had to stop half way, though, for Jason to take a turn.
There was no mistake that Darla was a happy dog. She loved everyone. Her tail was too short to adequately wag enough to let people know this, so instead she wagged her entire body. And if you gave her a hug, she would reward you with a fantastic "love grunt' (uuummmppphhhh) and a full body lean (her version of a hug) to let you know she was reciprocating the love. She'd sigh with contentment under my feet as I'd rub her back and work at a desk. She'd romp along side me at the river. She loved to travel (well at least until one fateful day when she fell out of the car - another story for another time), and especially loved weekends with Jason's family, where she would be fed a steady diet of roast beef, mashed potatoes and the occasional McDonald's cheeseburger, which Jason's dad would drive out to get, exclusively for her. She was spoiled rotten, but gracious enough to return the favor by spoiling us with her love, too.
I should have posted this weeks ago when it took place.
Bedtime. Katie and I snuggled, chatting and whispering as we tend to do before she falls asleep. And this is the conversation that transpires...
Katie: I have a boyfriend, you know.
Me: Really (not trying to be shocked, but wanting more info)?
Katie: Yes, his name is Jason and he's really smart. He's the only other good kid in class.
Me: Smart nice guys are good.
Katie: I have an ex, too.
Me: (stifling grin) Really, what's that mean?
Katie: You know, an extra boyfriend, in case the first doesn't work out.
And thus karma begins to kick in...
First Sadie. Then Katie. With a brief feverish interlude by yours truly that quickly disappeared. Then Katie again. And now back to me. Day three of a fever... ugh.
So I'm forced to sit at home, thinking about lots of things that I've managed to avoid by being busy.
Here's what's been going through my head.
Jason's brother is sick again. I think it's bad. Another growth, pushing his kidneys aside. I'm pretty sure it's cancer, even though the results are still pending.
Jason and I are getting divorced. It's weird to be cool with it - we even joke about things that should not be funny, but are given our current situation. We're both ready, though it's been a long painful process to get here. He's going to be moving out ASAP, meaning when he gets a job and can afford to. For now we're stuck living in the same home, which is tough. We've come to a decent agreement on separation - in fact, we can backtrack the date to the time we officially separated sleeping space in our home (quite some time ago). I could be a 'free' agent as early as April. The girls are taking things pretty well. Katie has lots of questions, but we're both trying to be open and honest with her as we go through this. The kids will live with me, but Jason will have shared custody and see them as much as possible. We'll switch weekends, and have already started doing that.
Speaking of weekends, this is "my" weekend (no kids) so I'm trying to decide what to do. I want to get out and away, but have obligations Sunday, so I guess I'm in town. Maybe KD on Saturday with a friend or something.
Daytime TV sucks. I ended up just leaving it off all day. No interest whatsoever in "real" housewives (who are ironically as fake as one can get), talk shows or watching Rainman for the 400th time.
My work is getting to be too much for me. Three full time jobs, plus keeping the association management company on track with everything, is just too much. So I'm on the prowl for ways to reduce my hours. 70+ hour weeks are no longer fun. Working when sick is even less fun.
I'm wondering where my life will lead over the next year or two. Divorced mom of two. The thought of singlehood is daunting at the moment... though I look forward to moving on with life. Hopefully a new career. At least one new hobby, and a good girl-road-trip to some place I haven't been before, I hope.
Enough honesty into cyberspace. Time to check up on Raymond and see if he's had his date in the elevator yet...
I've been kind of quiet lately. Not just in blogland, but in life, too. Lots of introspection, lots of pondering. To my friends that I regularly talk to, I apologize for the sudden hermit-like behavior.
Life is full of change, we've all lived long enough to at least get that concept at this point. It's ever evolving, and we're along for the ride. Some of us think we can control destiny, some of us think that we're fated for a certain future. I'm kind of in between. I think there's a course, a path, but that we have the power to decide where it leads us. For years I chose to coast along in neutral, letting the 'fates' guide my path. Suddenly, I'm at a crossroads, and it's time to make a decision. Do I get in the drivers seat and take this baby for a spin, or do I continue to coast, content to view the scenery? It's so much safer to coast. But so much more fun to give life a spin...
So yeah. Went out of my way for that metaphor, but that's where I am. It sounds easy laid out like that. Drive, baby, drive - right? But driving is scary. You have to learn new skills, may have to encounter new people. All that stuff. Ok, I'll stop the metaphors. Officially done with them.
Anyway, I'm doing some major introspection, which leaves me little time to write. I've found myself sketching, which I haven't done in YEARS. And I found myself looking at life a bit of a different way. I tend to try (not always doing a good job of it, but I TRY) to put everyone else first. I now have a sign on my fridge saying "What do I want?". And I'm pondering that. What do I want this year? Next? Five years from now? And how am I going to get it?
I'm developing a list. It ranges from rediscovering my creative outlets to providing my kids the music lessons they want. It includes travel, a new career focus, personal growth, new paint in at least three rooms of the house and a kitty. It's a work in progress, needless to say.
Where does time go? You blink, and your baby is a first grader...
Happy birthday to my beautiful not-so-baby girl - I love you so much, and I'm so proud of what a compassionate young lady you are becoming!
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I've got a bit of a bee in my bonnet tonight. So I'm letting it out. I'm so sick to death of the right wing propaganda permeating the airwaves lately. I'm sick of the outright lies, sick of the overwhelming claims being made.
I'm totally in agreement that there are some programs from the Obama administration that need work, or could use improvement. I appreciate both sides for standing up for their perceived rights. But I am 100% over the over-the-top claims about health care being taken over by the government, the new socialist regime and the latest one - that Obama is going to brainwash our children tomorrow and tell them sex is OK during his address to public schools. Such. Utter. BS.
Here's the speech in its entirety. Go ahead, read it. Obama is going to - watch out - tell your kid to stay in school and work hard. He's going to tell them that to achieve anything, they must work hard. Heaven forbid the head of our country reach out to the children and encourage them to succeed. My God, this calls for a revolution.
Don't get me wrong. I know politics plays a part in all of this. Just as they played a part in our race to the moon. But please, tell me what is wrong with the most visibly powerful man in our country encouraging students to succeed?
So, tonight I went to our Hanover (our county's) website to find out when it will be presented. And it turns out it won't be shown to our students tomorrow. Here's what they say...
" Our complete energies must be directed to promoting a productive beginning to the school year for our teachers and children. It is important to support the establishment of new routines and a smooth opening at this pivotal moment.
The Office of the President is to be respected. This is what America’s public schools promote as a basic part of our curriculum. Therefore, rather than showing the speech on the first day of school, the speech will be recorded, instructional materials will be available, and the speech and lessons may be appropriately featured by classrooms electing to use them at a later time. This will allow time for schools to inform parents of existing opt-out procedures."
So let me get this right... kids all need to learn about math, language and science. They must learn about the history of our country, about civic responsibility. Our school board claims to "respect" the office of the President and promote it in curriculum - so shouldn't it, therefore, be included?For the past three months we've been talking to Sadie about her need to give up the beloved pacifier. She finally settled on giving it to her new little cousin, Evan. So, for the last two months, we've been working up to the big third birthday which would mark this momentous occasion. I knew it would be tough, but had no clue how bad it would be... There for a while I was actually worried she may cause permanent damage to her heart the way she was overworking it.
Being the Mom-of-the-Year I am, I decided to record some of it for posterity. A few director's notes before your viewing:
- You may want to turn your volume down before viewing. Waaaayyyy down.
- Not for the weak of heart. Ironic, since she's a heart kid.
- No children were permanently harmed in the making of this video, though it could have caused damage to eardrums for all in the vehicle.
- This was 20 minutes into it. Thus the gagging.
- Katie made the mistake of laughing at the absurdity of the situation (actually I think I started it). Thus the lashing out from Sadie to Katie.
- I do not normally "allow" temper tantrums, but was pretty helpless as we were on I-95. I figured, what the heck, she's strapped in and can't really hurt herself. Ignore it and it will end. Hopefully.
- I briefly considered exorcism, but determined it not to be needed after about 30 minutes, when she finally winded down...
Endnotes:
- Sadie was screaming "it's not funny!"
- Katie is the best big sister ever. In this two minute video alone she tried offering toys, diverting her attention to the pretty clouds and gave her her blanket.
- The windows were opened to ensure adequate oxygen flow, as Sadie seemed to be consuming most of what was in the car.
Bedtime resulted in another 15 minute episode much like this. I ended up putting her in her room and sat against her door as she wailed and banged, crying my eyes out. I hate to take her major source of comfort away, but also realize that it's this, or thousands in orthodontics bills years down the road.
I'll need major strength to get through this week...
Three years ago, almost to the day, I headed to the hospital, thinking I was in labor. They sent me home. A few hours later I came back, and within 7 minutes Sadie entered the world. Then we got the news - she was gravely ill and would require open heart surgery as soon as she could be stabilized.
Before that time I would have never dreamed of blogging and sharing my personal life with the world. Hell, I hadn't even considered that my child could potentially have a heart defect. I didn't know how one second could change your life forever.
Since then I've written about the joys and horrors, the stress and the recovery our family faced in those crucial first months... chronicling hearts torn open and put back together, both figuratively and literally. Then it grew beyond that, to include the hopes and fears for my daughters, then updates for long-distance family and friends to finally, what it is or isn't today - a journal I turn to to release small bits of my brain to the world.
This time of year brings back so many bittersweet memories - the agony of watching Sadie being taken away, not knowing if she made it to UVA alive, the joy of the first moment I hold her, almost a month later. More than anything, my heart sings a song of celebration that overrides those sad memories, though they still persist in the background. Because more than anything, tomorrow is a day of joy over how far Sadie has come and the miracle of her survival.
This summer has been an absolute whirlwind. Most of it has been spent in Three Oaks Montessori, working on summer camps (outer space, circus and art fun!), prepping for yet another remodel, adding students and getting the new staff in place and comfortable. We added a Kindergarten program, lots of space and have rearranged everything countless times to find the right flow. It's pretty exciting to see all the progress made, but my goodness, I'm exhausted.
I'm still working full time with association management as well. My two clients are both in interesting places, which takes up more time than ever. That makes a cranky Kim. I try to relive the stress with frequent trips to the pool with the girls. I look forward to the school year starting so that I can focus entirely on the associations and be past the licensing, new employee, remodel stages of the school for the year.
We managed to get a way for a few days with some friends to Outer Banks. Even though I worked about 10 hours while on my two and a half-day vacation (yes, I realize it's a disease) we managed to have some fun. It was great to stand in the surf, though, and completely revitalized me. We enjoyed visiting with our friends, and the kids were too cute as they frolicked in the sand. On the way out we stopped at the Currituck lighthouse in Corolla to take in the view. I love the Outer Banks. In all my travels, it's still one of my favorite spots to be.
This week Sadie turns three. She's been on a huge growth spurt the last week or two, so I'm hoping we can pack away her 24 mos and 2Ts by the time she's 3. She's still tiny as can be, but I think it may just be her makeup. Speaking of makeup - she's obsessed. On her face, arms, legs, with any bit of it she can find around the house. Trouble!
Katie turns 7 in two weeks, and start first grade on the 8th. We find out who her teacher is on Thursday, and I can't wait to see who of her friends are in her class. There are only four first grade classes, so chances are good we'll know a handful of kids in there.
My parents bought a new home, which is exciting news in our family. They're about 15 minutes from our place, which is great. It's a cute Cape with loads of potential, an awesome screened in back porch and a fenced in yard. I'm already planning on sending the kids over the minute they're ready for them... they'll love it!
Loads of other things have happened, but I'll spare the boredom of recounting them. I'm looking forward to reclaiming a 50 hour or less work week starting the week of the 15th and will stick to it. No new businesses, charity stuff or anything else in the brew (yet, anyway - who knows what I'll find to fill those 30 other hours I hope to abandon from the work week).
I realize how self-indulgent this blog has become. Ah well, that's what online journaling is all about. Sharing your insane ramblings with a bunch of strangers (and a few friends).
So, more indulgence... I realized late last night that I'm in the 'dead calm zone.' Not good.
See, I have several stages of stress.
Stage I: 'Bitchy zone.' When I have too much to do, the kids have gotten on my last nerve, work is overwhelming, etc. Ye old normal stress response.
Stage II: 'Manic zone' - usually brought on by righteous indignation, financial stress or a big annual meeting. Working a trillion hours to ensure ends are met, results are delivered and causes are underway.
Stage III: 'Dead calm zone' - uh oh, she's about to blow. This happens when stress is so overwhelming that my brain drops to neutral and refuses to budget out of there. The first time I witnessed a terrible accident (stop sign through a person), I discovered this response. I get busy with survival and focus on only that. Later, once the trauma has passed, I come down to a blubbering pile of nerves. This has happened more frequently through the years. Accidents, Sadie's survival struggle, and now, even finances are putting me there.
And sometimes after Stage III, if it's for an extended period, there's post traumatic stress-type crash. Bad news, gonna be tears kind of crash. Dread to get out of bed kind of crash. I've only been there a few times, and it's ugly. I'm terrified of going back, and do everything in my power to avoid getting there.
This week alone I've had major changes. Our lead teacher from Three Oaks last year is moving on - this was to be her last week. I had tons to do to ensure an easy transition to our new instructor who starts on the 15th. Old teacher got sick, and I've been having to run space camp (without curriculum as she forgot to leave it behind), lead the classroom and try to take care of the administrative stuff, as well as my "normal" job of association management. My clients are both struggling like never before. The only other Montessori school in Hanover closed, so parents are calling left and right to find out about our program. I have a board meeting today. I had class from 9-1. Next week I'm teaching on my own again. We have new students coming in. Jason lost his job again. Sadie is going through this God awful stage that makes me want to scream every other minute. My favorite-ever employee moved away last week, meaning one fewer person in the office.
Yesterday my brain was everywhere and I worked about an 18 hour day. Today it's not going anywhere I've put in 6 hours, and have at least 1o more I need to get in. I'm at wits end, thus the mid-day blog, when I should be preparing for a board meeting. I can't find time to get out with friends because of all the work obligations - and that, or the water and running, seem to be the only remedies for this level of stress.
I know, I know, this will pass. But enough already. I'm sick of the constant change. I know that's what life is all about and I can handle a little change, but there has been one major catastrophe or another for three years straight. Two bouts of unemployment, Jason's near death experience, Sadie's near death experience, biopsy for Katie, drug withdrawals with Sadie, family drama with extended members to include blindness, loss of mental function, heart attacks and death, addition of a new business a month prior to an economic collapse... it just keeps raining. I know others have it worse, and I know I should suck it up and not complain. There have been good things too. But really, how much can a girl take. Really!??!
I know more than anything I need a break. I haven't had any work-free weeks since Sadie was born, and I'm long overdue. My last vacation without work was in December 2005. Two days after I had Sadie I was standing outside the PICU on a conference call. Last year we went to Japan for my business, and I spent a huge chunk of the time in meetings or fighting with the contractor back home. I think two days were work free (thank you, Mt. Koya, for your beautiful retreat). Overdue, but there's no end in sight, so I've got to keep plugging until I can get to a point where I can replenish.
(deep breath)
OK, better. Therapeutic writing and a mid-day glass of wine helps a ton.
Who's up for some Xanax?
I've been MIA in blogland most the summer, but with good reason. My work is kicking my butt, and without regular child care during the summer I feel like I'm in a constant upstream battle. Since June I haven't left Richmond except for a few family visits to NoVA and a meeting in DC, from which I promptly returned. I'm dying to get out of here, but alas, vacation is not in the cards this year. Or next the way things are going.
Jason finally found employment, but it's anything but steady and reliable. So he continues to work. Both of my clients are struggling more than ever with the economic climate. I keep finding new things I need to spend money on for the school - a new addition to the driveway for parking, the addition of an ADA accessable bathroom, insurance, yadda, yadda... I feel like every time I call the county or social services it costs a few thousand bucks in new requirements. Take that and add in seven months of unemployment and you have the makings of a lot of fun.
There are lots of changes going on, too. The biggest one is changes in staffing at the school and with MCC, which I'm in knots over. I'm not sure how it will all play out, but I'm hoping that the fall will be less eventful and I can find a way to reduce my workload to 40-50 hour weeks.
So, needless to say, I haven't felt like blogging in my free time. The kids are doing oodles of adorable things to share, but by the end of the day I want to plop in bed with a good book (just finished Shadow of the Wind - incredible!) and ignore the world. I'm sure I'll come out of the blogging slump at some point, but for now, I just can't keep up, so I won't bother with apologies to the 3 folks that still follow along.
I did manage one splurge for the summer - we joined a pool at long last. It's great to take off in the late afternoon, head to the pool and soak up the sun. I'm a much better mom, employer and friend if I can get just an hour in the sun and water a few days a week. Guess I need to move to Florida.
I'll have big updates on the school, happenings in the house and more soon...
But only to DC this time. Someone should have slapped me when I suggested we'd save money by doing IMPI's symposium locally. I hate DC. Sure, it's nice for a great night of theater, or perhaps a day on the Mall, but overall, dislike it. Mean people. Crappy drivers. Nonstop traffic in every direction.
So I check into the hotel after 7 hours on the road today (from RVA to MD back to DC - should have been more like 4 tops). I'm handed a nifty slip of paper that informs me that a "routine maintenance" will occur between 3 and 5 am tomorrow morning. It's now 9. Crap. The maintenance of course involves fire alarms, power outage and flashing lights. Oddly enough, I've been to this hotel ONCE before, and it resulted in a 5:30 am fire-alarm wake up call. I'm not a fan of this hotel now. It's official.
I retire to my room and wait an hour for the usual bottle of wine to appear (when you give the hotel 60 or so thousand dollars of business they usually give you a bottle of wine and perhaps a cheese tray) and finally give up at 10:15, get in the PJs and start working. Of course then the knock comes... 10:17.
A 2006 Cab... not bad, but not to die for. It can wait for another night. But this tray of, um, stuff. Now this I must investigate. A brown squishy object, lumpy greyish glob, soggy biscotti and some squishy pecans. Now this is a new one.
Of course I have to try it all anyway. Squishy brown object is perhaps a spiced pear, aged 1 month. Greyish glob is applesauce, and not the good kind. Soggy biscotti... well, it's soggy. Pecans - one bite and I spit it out. And I do NOT spit out food. Gagging and looking for comfort, my eyes settle on the bottle of wine.
Wine in hand, I return to my beloved PJ's, log onto the computer (no free WiFi? What is this, 2002?!). But I figure, eh, what the heck. I'll be up at 3 am anyway... might as well call it a night, screw around on FaceBook and write a blog entry. I'm so far behind on work that another three to four hours will make no difference.
With that I'm off... another fabulous week of international meeting intrigue officially under way. At least there's no opportunity for lost luggage this go round.
Sometimes you think you've moved on, that the process wasn't as bad as you feared, etc. Then some days it drops on you like a load of bricks.
In the process of cleaning out office files and old emails, I came across a few notes from Amanda. Stupid, silly, snarky stuff. And I completely teared up and felt like I'd taken a left hook from out of nowhere.
I frickin' HATE cancer.
Like it or not, I've suddenly been faced with the reality that I am a grownup. I don't know when it happened, it just kind of snuck up in there. True, most people realize this in their 20s, but I'm a bit slow, I guess. Despite owning a home at the ripe old age of 21 and taking on progressive levels of responsibility ever since, it never really hit me that I was really, truly grown.
Kids came along, and I have relished reliving childhood memories (and creating new ones for them), but still, did not feel adultish.
I started a couple of businesses. Now I was stressed. But still not grownupish.
And Sadie was born with her complexities and my eyes were opened to a whole new world of struggles, sick children and even those lost. Friends started getting cancer and strokes. I lost a childhood friend of 20 years. I went into this suddenly adult world kicking and screaming, not ready for it. So I ignored it.
And yesterday, I became a grand-aunt. Seriously. And suddenly, very strongly, I feel grown up. And I don't want to be.
I don't want the whiskers that have suddenly popped up on the side of my face. What is that about? I am not thrilled that my body suddenly decided not to support my current lifestyle and eating habits. And I'm disturbed when the teens at concerts talk about bands as "old school" (No Doubt - REALLY? Old School?!) when telling me they enjoy the show. Not. Cool.
So I'm going to pout about it. That'll show you, adulthood. Ppppphhhhbt!
One of the wonderful friends I've made since my move to Richmond is Christy, mom to three. Her middle child, Harlie, has been mentioned here several times before - her medical needs are huge. I so admire Christy, who I swear should have an honorary PhD in pediatric medicine. She can juggle a creeping infant and talkative five year old all while suctioning her trached two and a half year old daughter. The woman has cleaned more puke than any full time nurse, attended to countless wounds and can plug in oxygen and a feeding in no time flat. Yeah, she deserves lots of gold stars.
I'm thinking of her today, as she sits, again, in a hospital, waiting for a surgery. I've only had to be through major surgery with a child once, and I can tell you, no matter how tough you are, it's so hard. So, so hard. Christy's sat in that OR waiting room more times than I care to think about (I think this is number 11).
What a lot of people don't get about a major surgery like this is that the surgery, itself, isn't the scariest part necessarily. It's the recovery road. Christy had to pack not knowing how long she'd stay. Planning for the unknown is an impossible and daunting task. It really is too much to ask of a mom, but yet you don't get a choice in the matter. I think Christy does a fantastic job handling the hand she's been dealt, even if she thinks she doesn't.
So say a little prayer for Harlie today as she undergoes yet another surgery (this one's open heart). And, just as importantly, send a little good mojo to Christy and her family!
UPDATE: Harlie did well in surgery, though they were unable to do all they hoped because her heart is so complicated. She woke up briefly afterward and signed a bit with her parents. Should be home in two weeks or so if recovery goes well!
First of all, congrats to my friends the Stevens on their new little girl! Welcome baby Rebecca! Can't wait to meet her...
I've sucked at blogging lately - life seems to be in overdrive lately. I can't wait for the summer and a break from at least one of the businesses for a couple of weeks. Until then, you're forced to endure bullet points and brief tidbits:
I have some blog posts I wrote on the plane I'll have to back post when I have time, but for now, I wanted to pass on that I'm free again! For a month at least...
The 10th Annual Consumer Trends Forum (aka "my baby") went off well this past week, with Jeremy Gutsche of TrendHunter.com kicking off the event with a keynote. I was extremely nervous when he went on stage - our most expensive speaker he was my pick, and my push, for the keynote. I was nervous his youth would be cliche and trends would be stale. I will admit that I cringed when he started his warm up with a bass-thumping video with text overlays I cringed. I darted glances around the room at my Boomers to see if they were already casting him off as fluff. My stomach turned thinking he would try to motivate without delivering the goods on trends, and the tools we need to translate them into innovation. Luckily for me, it turns out the guy was not only NOT fluff, but intelligent, motivating and even, dare I day, inspiring. He left with a darn near perfect score from our very diverse group of trend watchers. Check out his picks for 2009's trends....
The rest of the Forum went well, and I left with some great insights from SlowFood USA, Google, the Center for Culinary Design and other well-respected trend leaders from across the nation. All in all a good week, and a great way to conclude a taxing year of meeting planning for the event.
Now to start planning for next year... how can we top it?!
Katie told me tonight that she doesn't want to have kids, she just wants to babysit. When I asked her why (assuming it's the pain factor - she's discussed that quite a bit lately) she told me something I didn't expect.
She said it's because mommies have to work to hard and don't get to rest much. She doesn't want to be like me, having to work and take care of kids all the time without very much sleep.
*Sniff.*
I need to set a better example.
I'm trying to hold my crap together, but in all honesty, I'm about to lose it. The past few months have been trying and I feel that if one more thing were to drop, one more catastrophe hit, that I will just not be able to function any more. And then the next shoe drops.
Perhaps it's the four jobs that I'm juggling simultaneously. It could be the overwhelming pressure I feel to find new sources of income, such as agreeing to write an eBook on a topic I have zero interest in. It could be the simple pressures of managing a household. Maybe it's the pressure I feel when trying to find creative ways to pay bills when our income has been decimated by job loss for over four months - something I'd never accounted for in my worst case financial plans. Could be the financial demise of both of my clients, my main sources of income. Perhaps the crap Hanover county is putting me through to get a special exception to operate a home-based business? Or social services hoops required for licensing? To find time for the girls - quality time - in the midst of all of it. Or the grief over losing a long time friend. The death of a marriage. Yeah, I said it. Those of you closest to me already know, but throw it into the mix.
I am desperate for a way to escape it all, but I know escape isn't the answer. I have to somehow find a way to take on and tackle each of these, and the million smaller burdens they bring along. I guess my issue at the moment is figuring out how to handle even one, let alone all of them, simultaneously.
"That I May Serve." Take a moment today honor the memory of those we lost at Virginia Tech two years ago today. Remember the families that suffered the ultimate loss. The friends. The classmates. Those still trying to pick up the pieces today.
I choose to remember by devoting part of my day to service to others, in their honor. I hope you will too. We are Hokies, we will prevail!!
There are times that I just hit a wall. It's a natural process we all go through, I know, but some times the wall seems a bit higher than others.
The past few months have been incredibly challenging in so many ways. I've found myself digging deeper within for strength to simply get up some mornings. It's not like I'm going through more than anyone else, it's just that, for some reason, I'm struggling right now. Doors are being closed all around me, and I'm stuck in a bit of limbo, waiting for new ones to open. I'm not a very patient person by nature, so the waiting is starting to bite at me. I keep trying new doorknobs and they're locked... one day one will open, I'm sure.
I'm having a hard time trying to find time to write, let alone get what I want out. Most of it I don't want to share with cyberspace, let alone many of my closest friends. So, hang in there. I'll be back to my normal self one day soon. Or maybe not. Either way, better blog posts will be in the works.
By the way, Amanda's send off was great. It was so nice to reconnect with friends old and new to say goodbye to one helluva great friend. A gaping hole is left in cyberspace and my circle of friends, but I'm better for have knowing her.
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.
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!'
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.
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.
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!
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.
Look Mommy - SNOW!
Yipee!!!!
Our backyard the next morning - we woke up to 9" of snow.
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!!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!
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?
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!
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.
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!
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.
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...
