Lauras' Hearts

Battle Of the BULGE

2012-02-29T15:49:00.000-08:00

Most of us have battled with weight at some point in our lives. I, myself, have had a tumultuous relationship with food for the better part of my life. But as a mom, my battle of the bulge is quite different.

Most parents will have at some point have battled during meal times. Worried that their child is not eating enough veggies and fruits, or not enough protein or too much, too many carbs....you get my point. Then, we are bombarded with headlines that warn us about the dangers of childhood obesity. Kids are bigger then they have ever been before and far less active. Kids today watch too much t.v., eat too much junk food, play too many video games...it is no wonder we obsess over food! Never in my life would I have imagined I would be trying to “fatten” one of my kids up. But here I am....sigh.

Let’s rewind a bit with a little background information.

Feeding issues generally come hand in hand with Congenital Heart Defects for a variety of reasons. The most common reason is that kids with CHD’s (particularly the kids with more severe defects) is that they do not consume enough calories. The Mighty O is no different. However, his issues go a little deeper then that.

NG Tube

When Owen was born he was immediately taken to the CCCU (Cardiac Critical Care Unit) at the Hospital for Sick Children. The first few weeks of his life were rather precarious, so he was kept sedated for much of the time. He was fed via a NG-Tube (Nasogastric Feeding Tube) that went in through his nose down to his tummy.

When he was finally well enough to begin to eat, he had lost the ability to swallow. That’s right! Did you know you could forget how to do that? Well, you can and he did. He did not learn to swallow solid food until he was over a year old and liquids until he was 2.5 years old. At

G-Tube fed during a nap.

7 months, he was fitted for a more permanent feeding tube called the G-tube(Gastric Feeding Tube) which is a tube that is inserted directly into the stomach. He now sports a Mic-Key Button, a neater more compact version of the G-Tube.

Owen’s heart works A LOT harder then the hearts of other 3 years olds, which means he burns more calories. He, therefore, should consume more calories....which is a great segue to feeding problem Number 3, heart defects and/or heart failure can cause loss of appetite. Fab, right?

Ok, so let’s review:

Problem #1: Forgot how to swallow

Problem #2: Burns more calories

Problem #3: Small appetite

Happy with his button!

So, I have some obstacles here....did I mention I have to measure his fluid intake?

Hello Problem #4.

Most people with heart disease will have to keep an eye on their fluid intake. Too much and it puts strain on the heart. Too little and you can become dehydrated which can put you at a risk for a stroke.

What it all boils down to is that the few precious calories he does eat orally, I have to make count. He gets fed a nutritional supplement through his tube when he sleeps and that helps to ensure he is getting some good nutrition. Not ideal, but better then nothing. Then, of course, I have the normal behaviour of a 3 year old to contend with. Why would I eat broccoli when chocolate tastes so much better?

Currently, the Mighty O has to pack on a few pounds (he is about the size of the average 2 year old). His next surgery will inevitably cause some weight loss, and right now, he ain’t got it to lose. So, we journey on, add cream to his milk, butter on everything, nothing fat-free, and everything gets dipped!!!

-LV

“All you need is love.

But a little chocolate now and then doesn't hurt.”

~Charles Schulz

Brad who?

2012-02-16T17:15:00.000-08:00

Ah, celebrities! We love to love them and we love to hate them....they entertain us, make us laugh, make us cry, some even make us swoon. We read about them daily, follow them on Twitter, Like them on Facebook, always looking for the latest gossip. My top fave celebrities include: Benson, Caldarone, Van Arsdell, Schwartz, Osami...to name a few.

Wait....what?? You do not know who they are? Oh...that’s odd. Huh.

Maybe because the people that I consider to be celebrities are all people who have saved my son’s life. They have all come in, at one point or another, and done the miraculous...saved my baby from certain death. In my eyes they...Walk. On. Water.

Maybe they do not earn millions upon millions of dollars for each life they save, maybe they will not win an Academy Award, they probably won’t be hounded by paparazzi, women won’t throw themselves at them, they do not have groupies and the closest they get to an entourage is the Cardiac Fellows during rounds.

SickKids Hockey Jersey signed by my celebs!

We live in a world where athletes are considered heros, actors are put on pedestals and musicians are applauded by the thousands for playing a song. Let’s be real, society has things a little back asswards. You can jump really high and that makes you a hero? You pretended to be a father in a movie and you get an award? You sang a song someone else wrote and thousands of people chant your name? A hero is a man who walks into a room in the middle of the night, rolls up his sleeves and inserts a central line. A person who performs a complex cardiac catheterization on your 8 day old baby twice within a 12 hour period deserves an award. A man who puts his hand into your dying infant son’s chest to manually pump his heart should be applauded by millions.

Sorry, Ben, Mark, Bruce, Caleb and Charlie....you boys may be on my laminated top 5 and smokin’ hot....but you ain’t my heroes.

-LV

Tabula Rasa

2011-12-28T15:23:00.000-08:00

Even as a little girl, the coming of the new year was an emotional time for me. Somehow, the starting of a new year meant gaining an opportunity to start fresh. Putting to rest the mistakes you have made, second chances (in some cases third, fourth, fifth), become more of the person you want to be...but it is also a sad time. Saying goodbye to moments you will never have again, saying goodbye to loved ones (sometimes forever), having another year go by that you can never get back....

This past year has been a tumultuous one, to say the least, in our family. For a while it felt like there were more downs then ups, more bad news then good, more challenges then victories. But we made it through and more importantly made it through in tact!

Being the mother of a toddler with a complex congenital heart defect makes that last statement even more monumental....we survived another year, ALL of us! Each year is one more year that my son has fought and won, one more year that his broken heart keep beating, one more year that his little body withstood the odds, and one more year we told the beast that is CHDs to “Bite Me!”

My 3 year old went into heart failure in late 2010...and before we rang in 2012, he was out. For those of you who do not live in the CHD world, that is friggin’ huge!! Sure, coming out of heart failure is not unheard of, but for someone whose road has been as unstable and uncertain as The Mighty O’s has, it kinda is nothing short of miraculous! What does that mean for us this upcoming year? Surgery...sigh. He needs it to live but frankly, we are not exactly eager for it’s impending arrival. The last stage of his three-staged surgery is the easiest technically speaking for the surgeons. For the rest of us, it is potentially the most difficult. When you send off your baby into open heart surgery there is some comfort in knowing that they do not understand what is happening. They have less fear of the unknown and can be distracted more easily. Kids who have the Fontan are usually walking and talking and while they may not understand what is about to happen they most certainly know it cannot be good...

So, as the new year approaches we put the battles we’ve lost and won behind us and get our armor on for the next one. Take the lessons we learned the hard way last year and put them into motion. And continue to raise awareness of Congenital Heart Defects and show the world that some people do not become warriors, they are born already fighting.

Have a happy and healthy new year!

~LV

Everybody outta the pool...

2011-09-01T07:46:00.000-07:00

Try not to have a good time...this is supposed to be educational.

~Lucy Van Pelt

Ah, the first day of school....probably the most wonderful time of year for parents. New clothes, new lunch bags, school supplies...runny noses, coughs, colds, flus, fevers, germs...sigh.

My two older kids both started in a Montessori school at 2.5 in the Toddler program. Just a half day to get them exposed to new people and places. Our hope was that The Mighty O would have that same experience. He was to start in January 2011 but after having discovered he was in heart failure we decided to wait to see what would happen in the next couple of months. Well, the school starts soon and all systems are go...still in heart failure but what can you do?

Having a child start school for the first time is anxiety provoking enough, forget having to go and give a crash course on heart defects, cyanosis, oxygen saturations, work of breathing, effects of a stroke, seizures, monitoring fluid intake, feeding tube precautions...good times! But this is what it requires for the The Mighty O to have the most “normal” first time school experience we can give him. All for the benefit of some good ol’ fashioned book learning.

One might ask why we have decided to send him to school? I mean, the odds are pretty good he’ll get sick...a lot! He legally doesn’t have to go so why send him earlier? Well, here is our philosophy. It is simple and to the point. Quality of life comes first. What is the point of life if you are miserable? The Mighty O is the happiest 3 year old I have ever met....I would hate for his happiness to be stifled. We want him to live a long happy life...but if his life were to be short, I want him to be happy. So, off to school he will go. Of course we have gotten the approval of his medical team (I mean, we’re nuts but not crazy).

So, my hubby and I will be meeting with his new teachers and giving them the low down on the O-Dawg...gosh, I hope we don’t scare them too much!

- LauraV

Strength

2011-07-27T11:32:00.000-07:00

“Courage is not the towering oak that sees storms come and go;

it is the fragile blossom that opens in the snow.”

~Alice M. Swaim

Today the Mighty O was wearing his Wyatt’s Warrior t-shirt to his OEYC program. He has been attending the “Time for Twos” July session at our local Early Years Centre. I know he is 3 but that is par for the course in the CHD world...but I digress.

A parent asked me about his shirt... “Is that some sort of organization?” Ahhhhh, an opportunity to raise awareness...I did my spiel, O was born with half a heart...4 open hearts, 6 cardiac catheterizations (or is it 7?) 1 stroke, 1 in 70 Canadian newborns are affected, y’know the usual. One of the other parents noted how amazing the Mighty O looked and how strong I must be...I said no, I’m just his mom.

That got me thinking, that is NOT the first time I have been told I was strong. I am not strong...the MIghty O, now HE. IS. STRONG. He has looked the Grim Reaper in the eye a few times and said, “F@#$ You!” He has beat odds he statistically he should not have. He has been clinically dead and said , “NO, not yet!” He is 3 years old and stronger then anyone I have ever met. In fact, all of out heart friends- fighters, survivors and angels are ALL the strongest human beings you will ever be lucky enough to meet.

The Mighty O takes my breath away everyday...

-he will get up when he falls

-he will not give up on his goals

-he continues to sing and dance even when he is out of breath

-he has experienced more hardships then any adult I have ever met, yet wakes up with a smile everyday

-he is fearless

-he jumps into every situation head first (both figuratively and literally)

-he is only 3 years old

The Mighty O is the epitome of a super hero and I am just lucky enough to be his mom.

...the "When can I's"....

2011-07-19T17:00:00.000-07:00

As parents we have all said, “I cannot wait until my kid starts sleeping through the night”, “I can’t wait until my toddler is potty trained”, “I cannot wait until they can wake up on their own and let me sleep in!” I have uttered those very words myself, in fact I have dreamt about a diaper free household full of well rested grown-ups....but that is not what I wait for. I do not say, “I cannot wait”...Nope...I get to wait for my 3 year to be so sick that if medical intervention does not happen he will die. I get to wait for surgeons to tell me that have to crack open his chest and fiddle with his misshapen and deformed heart until it kinda sorta does something helpful that will allow him to live. A far cry from from sleeping in!!

The Mighty O was born with half a heart. His ONLY chances for survival are a 3-staged surgical procedure done at 1 week, 6-8 months and 3-4 years of age OR a heart transplant. Those options are crappy at best. But there are options. In the early 1980’s any baby born with HLHS (Hypoplastic Left Heart syndrome) was made “comfortable” and would die within 2 weeks. So, yes our options are much better. To date, O has had 4 open heart surgeries and 6 cardiac-catheterizations to “fix” his broken heart. As a result of his tumultuous first year of life, he is now in heart failure. Sigh. He still has one surgery to go in his staged surgery correction. But his heart function is so poor that if they even attempted that final surgery he would not survive.

So now what? More medications...he is on 9 taken 6 different times a day. Sounds fun, I know....2 of those medications have the sole purpose to increase heart function. But, they take several months to be effective if in fact they are even going to work. So, what do we do in the meantime.....we wait. We wait for the Mighty O to become so sick that he needs surgery and WHEN that day comes (and it most definitely will) we have to hope that those meds did their job and his heart can handle the surgery. If not, we wait for a new heart...fabulous! A new heart probably sound like an easy option for some...but is not. Ever thought about what would happen if you toddler had a horrific accident and was left brain dead what would happen to his or her organs? Neither have most parents...who want to even contemplate that? Finding hearts for babies and kids is difficult and then finding a match is even harder...then there are other complications and potential issues that go along with that. Sigh.

And then there is the Mighty O...who contrary to what his heart dictates, cannot wait to go play outside, cannot wait to ride his trike, cannot wait to go to the park, cannot wait to play soccer, cannot wait to go swimming. He does not know know the heaviness of my wait...he only knows, “When can I?” It is the "When can I's?" that gets me through the days of waiting...the excitement in his eyes when a new day starts. Listening to him sing songs while he plays with his cars. Seeing the pride in his face when he achieves a goal he has been struggling to attain.

So, maybe tonight, when you tuck your babe into bed and begin to wonder whether they will sleep through the night...you will instead be thankful that you are only waiting for restful sleep. And look forward to the day when you hear, "Mom, when can I....."

Just sayin’....

Laura V.

Grace Under Pressure!?!?!?

2011-06-10T10:02:00.000-07:00

I am thinking not today.....

Forgive what is about to be a giant rant, because I need to get this off my overloaded shoulders already.

We are 2 days away from our 4th annual Golf Tournament, in memory of Wyatt - as most of you probably already know.
To begin with, my daughters 4 dance recitals wound up being this weekend - last night, tonight and twice tomorrow. Not great timing for sure, but- I figured I would manage, work on stuff in between recitals. Fine. Generally I have most donations etc at least a week ahead of time anyways, so no big deal right? Right.
This time has proven to be very different. It has reminded me to never think I know how things will go, because really I have no idea. It's also reminded me to count on myself and very few other people, and that anything that CAN go wrong, WILL.

Yes, I am having a bad day.

I really think that EVERYONE should be made to plan one major event in their lives - just once. Perhaps then they would understand the countless hours of planning, organizing, running around, attention to details, the team making, the table planning, the pursuing of donations, the running around to pick up those donations, the putting together all of those donations into something that makes some sort of sense as a prize, raffle or silent auction.... the putting together of an auction, making sure the day runs smoothly, all the paperwork etc. etc. etc...... Perhaps then people would not leave things to the last minute to say yes I am coming, or say all along yes I am coming, and then at the last minute say oh by the way, no I am not, and now my 10 friends aren't either.... I wish people understood that I not only do all this, but answer to whichever venue I am sealing with, and am responsible for paying for all of you who say you are coming and then change your mind the day before when numbers have been handed in!
Don't get me wrong, I understand extrenuating circumstances, but I guarantee you, in 99% of the cases, that's not it.
And why, why, why????? Tell me you are coming for the last year to whatever event it is and then tell me the day before that now you can't afford it!?!?!?! What???? Have you not had the last year to plan for it?   Have you not also known the price?? Did something happen last night that depleted everything?? Ok, if that's the case, you have my sympathy and understanding - but otherwise - why tell me you are coming all year and then at the last minute say no, not now, I can't afford it?! I don't get it.
I know that if something is important to me, if it really matters to me, and I know about it I make sure I am there. I make sure I have the means to be there. To me, this is not only about the hospital and all the other kids there fighting every day for their lives, and not just about those kids and their families that we are able to help, but it is also about Wyatt. And Wyatt's memory, I have a very hard time with that. Wyatt is not here - we don't buy him birthday gifts, Christmas gifts, Easter gifts or Halloween costumes or candy. We can't buy him something just because we saw it and it was cute - and neither can you! So this is what we do for him. These are his gifts.   I know he would be so proud and honored for all that he receives, but I also know he would be a little disappointed in the ones that he is expecting but doesn't receive - just like anyone else would be. Well, I am the face of that I guess, since he isn't here to say so for himself.

I understand that everyone does what they can, and that everyone cannot do everything, so please do not misconstrue this for meaning that. What I am inexplicably frustrated and disappointed with is those who say one thing and do another.
For all of you out there who show your support - and yes, there are a lot of you - I am eternally greatful. Whether it is by giving donations, sponsorships, attending events, doing our printing, volunteering, whatever the case may be - We couldn't do it without you.

To top it off, on top of people backing out at the last minute, my golf balls, which were supposed to be given to every golfer, and were supposed to be here last week are still not here - and won't be here, as I found out today, as they got stuck in customs. Brilliant. Why GOLF BALLS get stuck in customs is beyond me, but they have. Now I am scrambling to deal with this. AND I can't reach the donor who purchased them for us. Great.
Meantime, I am putting together bags (well gonna try too), preparing auction stuff, raffle stuff, golfers prizes, making baskets, bid sheets, auction signs, making sure the hole sponsor signage, donors signs and banners get made... OH, and making teams up, that apparently are changing every 5 minutes and dinner tables which are doing much the same.

Despite all this, when I muddle through tonight and tomorrow, I know Sunday will be a great day. Wyatt will be shining down on us with his angel friends, Emma, Zack, Grady and a whole host of others. The sun will be shining, and a good time will be had by all who come. Some fantastic prizes will be given out, even some trophies! We will have a fun dinner, and some people will even take home some silent auction items and raffle prizes!   And most importantly, no matter what, we will be supporting the Heart Centre at SickKids and families affected by Congenital Heart Defects. THAT is what matters most. THAT is what it's all about.

Did I mention it's my daughters dance recital, I have 3 kids, by the way, and I work full time - have 2 hours (minimum) each way commute every day......... I am a wee bit stressed today.

Was that graceful???

I don't think so, but I sure feel better.

THANK YOU to everyone who has donated, sponsored, volunteered or is coming out Sunday, we are going to have a GREAT time :)

Life on Autopilot

2011-06-01T11:11:00.000-07:00

“Stop and smell the roses....” We’ve all heard it before but who has the time! I mean give me a break. Any parent knows there is no time for anything, add a special needs/medically fragile kid into the mix and you are basically screwed. I have been stressing for weeks about this posting....”it’s my turn gotta write something”. But with appointments, classes, practices, therapies, doctors, tests, crisis, drama, fundraisers etc... it kinda got swept under the rug.

When the Mighty O was born, we quickly learned that life is incredibly fragile. Up until then, we were cruising along in life. Don’t get me wrong, we had our share of problems and drama just like any other family. But then life slammed on the brakes. This small human being that grew inside me was born with a CHD and dealt a crappy hand no adult (let alone baby) should ever endure. At 8 days old, he went in for his first open-heart surgery, died, came back, another surgery then had a stroke...poor kid wasn’t even a week and a half! Suddenly the world was no longer the same. Eventually, hearing of the loss of a baby because common place, medical jargon became everyday language, seeing children and families suffer was to be expected. But as the days went by, even the Mighty O’s struggles (old and new) became part of everyday life. Every new complication was and is taken as par for the course and life is back on autopilot.

Then recently, a cherished friend reminded me to stop and listen to the music.

So, I did.

Life is hard. Life can be insane. But if we don’t stop from time to time we miss things. We forget how fun it is to watch ants scurrying around or chase butterflies in a field. Yesterday, I smiled as I watched the Mighty O playing air guitar and dancing to “Brown-eyed Girl”. He knows what it is all about. He has very right to be a miserable child....but he is the opposite. This kid has a smile brighter then the sun. We need to nurture ourselves and turn off the autopilot from time to time...O has taught me about what life really is about and it took a friend to remind me of those lessons.

So, let this be your reminder: stop and listen to the words and not just the music, sit and watch the stars and feel the cool breeze, watch your children sing and dance without inhibitions...and when you have done that, walk over to your computer and go to www.wyattswarriors.ca and buy your tickets to our 4th Annual Golf Tournament on June 12th at the Royal Ashburn Golf Club in Whitby...hey, I still got stuff to get done:)

Laura V.

“If you don’t play every day, you lose that fine edge...”

~Snoopy

2 YEARS TODAY...

2011-05-16T10:36:00.001-07:00

Please take a moment today, remember Wyatt, what a brave, courageous, strong, amazing, adorable, loving little boy he was, and think of what he taught you.

Hug your children tight and treasure every moment.

Wyatt, I love you just as much today as I did 2 years ago, if not more. I know you are always with me, and guide me through every day of my life and have changed it in so many ways - but I would give it all up to have you back, even for just one more day.

I Love and miss you more than words could ever explain, I can't believe you have been gone as long as you were here. How does someone so small, and with such a short life, make such a massive impact?
All day I have had flash backs of the last days of your life, and what followed. It's haunting, but I don't want them to go away either. I will continue to hang onto every ounce of memory I have of you - good and bad - because that is all we have now. I hope that your memories of us, and of being here are as amazing and love filled as the ones we have of you.

How does 2 years feel so friggin long - a lifetime ago, and like yesterday all at the same time.....

Super Auntie
xoxoxoxoxoxo

Fast Approaching!

2011-05-11T10:03:00.000-07:00

Hi Everyone!

Well here we are in the middle of May already - just weeks away from three events.   I feel like I might lose my mind, that is, if I haven't already.
We celebrated what would have been Wyatt's 4th Birthday on April 27th - we had a Backyardigans cake and let go of balloons that we had written notes to Wyatt on. This has become our "tradition" so to speak, since he died. Our way of spending his birthday. We stood and watched the balloons until we were certain we could not see the specks in the sky anymore.   We found it interesting how all the balloons we released stayed so close together, even though they were let go at different moments, by different people of different heights etc. It was like they knew where they needed to go. Wyatt always loved the Backyardigans so it was appropriate to have them on his cake.
We are now just days away from the 2nd "anniversary" of his death - the 16th of May. I find myself in a lot of emotional turmoil at this time, especially I think since his birth day and death day are so close together. It truly is very much like being on an emotional rollercoaster, and I feel sorry for anyone who has to deal with me on any given day, because you never know what you are going to get, or what "silly" thing may set me off.   I am really finding it hard to believe that he has been gone for 2 years already. It seems like yesterday and it seems like forever ago, all at the same time. 3 weeks after that, Wyatt will have been gone for as long as he was here. THIS I really cannot fathom.   It seems like Wyatt has always been a part of my life. I know that he always will be, and that so many aspects of my life are affected by him now, but I really can't think of how life was without him in it. It is so hard to believe I have another wow, let's hope, 60 years to go, without him in it. This is crazy to try to wrap my head around. I am not too sure what I will be doing on the 16th, but it will be something honoring his memory of that I am certain. I am also pretty certain it might involve cheesecake - a favorite of both mine and Wyatt's.

In keeping with keeping his memory alive, we have 3 events coming up in the next month. The funds raised at these events support the Labatt Family Heart Centre at The Hospital for Sick Children - where Wyatt spent most of his life, and families affected by Congenital Heart Defects.

What fun it is to plan, arrange, promote 3 events at once! Not to mention do the starting pieces for the next 3 events at the same time!
I am going to give you the basics on our upcoming events, just in case you haven't seen them somewhere else!
We are gearing up for our Let's Do Lunch event on May 27th, which is a networking luncheon at which staff from SickKids will be coming out and setting up an interactive display of a CCU child as well as sharing information on Congenital Heart Defects and helping us to raise awareness. This promises to be a fun and informative day! If you wish to join us, tickets are $75 and must be purchased in advance. This is taking place at Royal Ashburn Golf Club 10am-2pm

Pampered Chef party is also on May 27th at Nobleton United Church in Nobleton. You are not required to purchase tickets for this event, but please do try to let us know if you are planning on attending. There is no entrance cost, and 15% of all sales will be donated to Wyatt's Warriors. There will be food, fun and raffles! Starts at 7pm!

4th Annual Charity Golf Tournament is on Sunday June 12th at Royal Ashburn Golf Club. We are going to have a fantastic day filled with golf, fun, food, raffles, silent auction and amazing prizes for the golfers. Chance to win $25000 for a hole in one and more.
Those who register online will be entered to win a membership to Royal Ashburn! Tickets are $200 per golfer of $700 per foursome before June 1st. $50 for dinner only. Tickets MUST be purchased in advance.

Information on all three events can be found on our website, http://www.wyattswarriors.ca/
Add to these events that on May 24th there is a donor event at the Hospital, May 28th, Devon from Giving for 31 http://www.givingfor31.com/ will be joining us for the day to help prepare for the Golf Tournament and that on the 29th I will be speaking at the Labatt Family Heart Centre family Education Day, I have to take care of all the applications for the Walkathon, and book the venue and entertainment for next years Gala, and the usual working and kids stuff, and I really truly just might lose my mind. But it's a great feeling!

I would like to wish my little buddy Sawyer a Happy 2nd Birthday tomorrow, and my wish for him is that he gets back out of SickKids in time to have his birthday party, as planned, on Sunday!

If anyone is interested in coming out to any of our events, donating or sponsoring, please get in touch with me as we appreciate any and everything! We do still have sponsorship opportunities available for the Golf Tournament.

I am also excited to let you all know that we are VERY soon going to be launching our brand new Newsletter. I hope to have one sent out every 2 months with updates on events upcoming, CHD facts, a story about a CHD child, updates on how much we have raised,and other relevant information as it comes. We hope that you all will enjoy it! It will be emailed out, so if you wish to be included and I don't already have your email address, please message me at wyatts-warriors@hotmail.com and I will add you!

Last but not least, a big thank you to all of those helping out with these upcoming events - you know who you are, we couldn't do it without you!

Watch your Metro Newspaper on Friday, you just might see us in it!

Thank you all for reading my scatterbrained post!!! :p

Laura C.

It's that time again....

2011-04-15T09:25:00.000-07:00

Hi everyone,

It's me, Laura C.

I have a few things on my mind I wanted to share.
What a crazy time of year for us - on a few levels. First of all, as I had mentioned in my previous post, we are quickly coming up on what would be (or is?) Wyatt's 4th Birthday (April 27th) which brings a whole host of emotions with it, and the anticipation of it, I have learned often turns out to be even worse than the actual day, because by the time the day comes, you have already cried and thought and anticipated so much, that you actually get through that particular day easier than the ones leading up to it. At least that's been my experience so far..... One never knows when someone may decide to throw me for a loop and change the pattern!
3 weeks after that is the anniversary of his death. 2 years this year. May 16th. Really hard to believe. In the days and weeks leading up to these two dates, I find myself in a bit of a fog.
Add to this the fact that we have three, yes three, events coming up in the very near future, and I am quite certain I am losing at least a part of my mind.
Please then add to THAT, that I decided it was high time myself and my kids had a vacation, as we have never ever been on one, and that this was the fine time to do it. I am very very excited, as are they, but holy *#*! I had NO idea how much WORK it was going to be to get things organized for me to travel with my 3 kids. Paperwork galore, oh and of course shopping, and oops, jeez, maybe we need suitcases!?! Goodness I had no clue what I was in for. So me, my 3 kids, 4 suitcases, 4 carryons, a purse and a stroller will hit the air on Tuesday. Wish me luck! Did I mention that because of a very dear friend we will also be arriving at the airport in style!? Not sure which yet, but we are being driven by either a limo or an escalade :) Either way, I am very excited as I have never been in either!
I am having very mixed emotions about going on holidays as well because of the 3 events coming up. I have never left the Country (except once when I was 12) and I have NEVER had no access to my emails or been able to phone and be phoned at any given time. This scares me. What will I do without my email? How will I live without facebook? I may die without BBM! I am driving myself insane worrying about what is going to get done and not going to get done, while I am gone. Yes I realize it's only 7 days, but figure the next few days will be crazy and I won't be doing too much work, and the first few days back will be the same, so I figure in reality I am losing close to 2 weeks productivity. Yikes. This scares the crap out of me. As I was explaining this to a friend yesterday, she said to me, you know, I think you have become a workaholic. Wow, those words took me aback a little! I love my kids, love to spend time with them and do many many things that are not even close to work related. But then it occurred to me. People may view Wyatt's Warriors as another job, as a lot of WORK. And don't get me wrong, it really is. More work than most people even begin to realize. It's a lot of blood, sweat and tears and a whole lot of emotions. It's hours and hours on the phone, on the computer, running around to pick up donations. It's rejections and approvals, it's disappointment and elation. But one thing it is NOT, at least to me, is WORK. I don't see it that way, I guess because I enjoy it. I don't do it because I have to, I do it because I want to. I think that's why I don't see it that way. It's like the old saying goes - "Do something you love and you will never work a day in your life"
Our 3 events coming up are
May 27th - Let's Do Lunch at Royal Ashburn 10am-2pm
May 27th - Pampered Chef at Nobleton United Church 7pm
June 12th - 4th Annual Golf Tournament at Royal Ashburn
Please visit our website http://www.wyattswarriors.ca/ for all the details on these events, we would love to see you there :)
We are also accepting donations and looking for sponsors for these events, so please contact us if you are interested, at laura@wyattswarriors.ca or 289 404 1021 (keeping in mind of course that if you contact me April 19-27 you won't get an immediate response from me:) )
Lastly, to add to the already insane times, we have recently lost a few people close to us. I have attended 3 funerals in the last month. 2 for children, and one for a 39 year old. At a time when I am already back in my "grieving stage" as it were, due to the timing, this has been really difficult and overwhelming at times. Though I look at the strength and graciousness and determination of the families that these people have left behind, and I am inspired by them daily.
2 of these families - the family of Zack and the family of Leigh, both chose to accept donations in memory of them - and donate them to us at Wyatt's Warriors. This is so amazing and incredible to me that in their time of terrible loss and devastation, they have given us such a gift.
In the last week I have learned so much from my friend Ruth, Leigh's wife, through her loss of him. In a time where she has every right to be so angry, mean, nasty, resentful, vengeful and anything else you can think of, she is just the exact opposite and has shown such grace, kindness, thoughtlessness, selflessness, love, strength and courage, and has just made me and so many others respect, admire and love her more. What an inspiring amazing woman that I am proud to call a friend.
So friends, wish me luck as I venture into the unknown world of travelling, and I will see you all when I get back.
Don't forget to save the dates above, and keep the families of Leigh and Zack in your thoughts as they struggle with their fresh losses, and wish Wyatt a happy 4th birthday on the 27th!

Laura C

Climately Challenged

2011-04-12T11:04:00.000-07:00

Spring and fall, what used to be my least favourite times of year. Yep, they are full of nothing but allergens that fly through the air wrecking havoc on my allergies and asthma. Muddy, wet, smelly and just plain gross. Worms, rotting grass, garbage left behind from last year...ew.
But then came my Mighty O...my climately challenged toddler. The One and Only O is my son with the the messed up heart. And when one’s heart is as messed up as his, even the weather is a problem. If it is too cold, he cannot breathe and turns blue. If it’s too hot, he cannot breathe and turns blue. Don’t even get me started on wind!

So, when those few precious months in spring and fall roll around we have to take advantage. I load up on anti-histimines, take a few puffs and away we go! This year is particularly special...the Mighty O walks! He started walking late (thanks to the stroke he had when he was a newborn) so, he was not quite walking yet last spring. Taking a crawler to the park just doesn’t work...so, last Saturday we introduced Sir O to the PARK. At first he cried and said he wanted to go outside, not to the park. Poor kid didn’t even know what a park was. But he came around fast :)

This spring is also happens to be a crazy busy time for us at Wyatt’s Warriors. We’ve got the golf tournament in June we have to prepare for (shameless plug....June 12th at the Royal Ashburn, e-mail me or Laura for details or visit www.wyattswarriors.ca). Then of course there is Let’s Do Lunch on May 27th as well as a Pampered Chef shindig. As well our fellow warriors in Zack’s Dream Team have loads of fundraising events benefitting the creation of Zack’s Dream Elmo Room in his memory at York Central Hospital...so, we are busy, just sayin’

-Laura V.

Thoughts for the Day....

2011-04-05T12:59:00.000-07:00

Hi Everyone,
I am Laura C - the other half, the other Laura, also known as the Prez, Super Auntie, and Mummy. (well, probably other things too, but we won't write those here)
I have never written a blog, generally more the journal type, so bear with me through my first attempt here. A small bit about me, I am a Mum to 3 - Sean (13), Eric (9) and Gabriella (4). Oh and Neva the dog (2). I work full time, and run Wyatt's Warriors Congenital Heart Defects Foundation when I am not working, going to dancing, hockey, jiu jitsu or the like. I am Super Auntie to Wyatt, Godmother to Sawyer.... I love all my little CHD kids like they are extensions of Wyatt.
Hope you will enjoy the journey with us, and some guest posters too :)

Hard to believe we are only 22 days away from what would have been Wyatt's 4th Birthday, and just 41 days away from Wyatt having been gone for 2 years.
I have found myself reflecting a lot on Wyatt's life the last couple of months, even more than normal, because it occurred to me that when we pass this "anniversary" of sorts (of his death) this year, he will have been gone as long as he was here - yet I feel like he was always here, and I fluctuate between feeling like it was only yesterday that he died, and that it has been an eternity since I saw and held him. It's an entirely screwed up feeling. I see my kids growing and changing every day, their pictures on my wall changing, pictures on my cell phone changing, and yet Wyatt's remain the same. When I got a new phone recently, I panicked because I no longer had pictures of Wyatt on my phone - so a friend (so smart:)) told me to email one to myself and open and save it on my phone so I had at least one. I felt better after I did that - a little. I know of course in my mind, that it's not the same, but at least now I can pull out my phone and still show pictures of Wyatt. The pictures on my fridge are the same ones that have been there gor the last 3 years, of my kids with Wyatt. I have thought about cleaning my fridge off, but can't bring myself to do it.
It is funny the things that I/we do that make me think even more of Wyatt, wonder what he would be doing now, what he would like (and wouldn't like). How big would he be, would he be walking, would he be home (in my mind I always imagine that yes, of course he would be home!). We would be taking him to the Zoo, which I am sure he would love, planning a trip to Disney sometime in the near future, and right now we would be planning a big 4th Birthday bash.
Instead, I am still answering questions my kids ask about where he is, and why he died and will they see him again, and is he playing with his balls. My daughter looks up at the stars all the time and talks to him, which is really ironic because if you ask her where he is, she will tell you he is in his bed (at SickKids) playing with his balls and eating madagascar cake. I guess those are her two most vivid memories of him, and that's what she believes he is doing now. She still asks to visit him. Yet she talks to him in the stars. The boys of course know that he is not, but don't know what to think or believe in terms of "where" he is now and what he is able to do there and will they see him again.
I wish I had the answers for them. 2 years later, I am still looking for satisfactory ones for myself.

As time continues to march on, I still don't think there is a day that goes by that I don't cry - sometimes they are sad tears, sometimes they are happy memory tears - whether I hear a song that reminds me of him, see a show he liked, a toy he used to play with, or see something that would look cute on him - but can't buy for him. Or I walk into the hospital and smell hand sanitizer, or smell his cream, or walk into the OR waiting room. Or sometimes I meet really great people because of him still, and while it makes me happy, because I have met so many amazing people because of him, it makes me so sad too, because he is not here to share in it with us. We met so many people when Wyatt was alive of course, SO many, many of which I still consider to be among my best friends - Dan & Jess (Emma), Sara (Chance), Cortney & Mark (Sofia), Cristiana & Kevin (Isabella), Jeff & Leanne (Parker), Steve (Dr.) Schwartz, Jen & Kevin (Grady), Chrissie (Shelby), Laura & Brian (Owen), Osami... and many many more (please don't feel insulted if I left out your name!) But what is even more amazing to me, is the number of people Wyatt brought in to my life AFTER he died. He was no longer physically present, yet has such a presence that he has brought and continues to bring more amazing people into my life every day. A few examples of those people are Kayla & Sawyer, Heather & Paul (Zack), Randy, Mel & Brian (Tyson), the amazing donors & supporters we have now like our friends at Graziella's - all of these people have come into my life because of Wyatt.
When I look at my life now, and see how much it has changed in the last 4 years - SO much of it is because of Wyatt. He taught me so much, and really, he is still teaching me every day.
I miss you so much Wyatt, words could never ever explain.

Laura C.

LOL

2011-04-02T07:03:00.000-07:00

I am sarcastic. I make light. I crack jokes.

I make no apologies, that is who I am. Sure, I have found my foot in my mouth a few times, offended the occasional person, made comments at inappropriate times...I make mistakes. I try to watch what I say, especially if I know I am in company who may not appreciate my sense of humour. I tell you because I am blogging about Congenital Heart Defects....serious stuff. But humour is how I cope. When you have a child with a heart defect as severe as Owen’s you always prepare for the worst. On a daily basis you check, scan, observe every movement, every cough, every hiccup, every burp. Is his colour off today? Was he more blue yesterday? Does he look puffy? Is his stomach distended? Did he meet his T.F.I.? If he sleeps 5 minutes too long I worry he has arrested. If he does not answer when I call, I am scared I will turn the corner and find him collapsed on the floor. If I cannot hear him breath through the baby monitor I check to see if his chest is still rising and falling. I hear a thump I run to see if he is seizing. That is my life everyday, every moment, every second. If I did not laugh, I would fall apart. I have 3 kids to worry about, care for, love and raise. I do what I have to do to cope for myself and for them.

I am sarcastic. I make light. I crack jokes.

-LauraV.

Testing, testing...it this thing on?

2011-03-29T19:28:00.000-07:00

Hello Blogging World!
I suppose I should start by introducing myself. I am Laura V. One half of the Lauras' Hearts. I am a SAHM of 3 kids: Miss E (age 7 going on 16), Big G (5 years old) and the Mighty O (2.5 and my heart kid). I have been married for 10 years....

So, with all the thousands of blogs out there, why on earth would I decide to add to the mix??
Here is the deal, I was busy minding my own business, living my little life, living a life fairly trouble free when...SMACK!!! 3 words during the ultrasound of my youngest, "This is bad." Now, when a doctor says, "This is bad"...it's bad. Not like "this is bad I can't get a clear picture", not "this is bad I ran out of ultrasound gel". No, "This is bad" meant your unborn child has a complex congenital heart defect that very well may kill him. Up until then I had never heard of heart defects past a hole in the heart. Within 20 minutes not only did I learn that CHDs existed but I learned that my unborn son would be born with one, he has a good chance of dying, that there was still time to abort and he most certainly did not have a simple hole in the heart. Well, ain't that a kick in the pants! So, the Mighty O came to be. The fight was on and CHDs could not have picked a tougher kid to attack. O was born with HLHS (Hypoplastic Left Heart Syndrome). He was born with half a heart...you need a whole one to live, so you see how this is a problem. It would take several days of writing for me to tell you how much he and our family have been through...so I won't. What I will say is that he is in heart failure and we are doing everything we can to fix that.
So, now you are thinking that this will be a blog of our daily struggles with congenital heart defects. True, but there is a twist...Laura C. She too has been affected by CHDs except her little nephew did not survive to be 2 and a half. But you will read more about that later.

Us Lauras are not the type of moms to allow this demon of a defect to come into our lives and wreck havoc. No, we took it further. We started a foundation. The goal is to raise awareness and raise money. The story of Wyatt's Warriors Congenital Heart Defects Foundation of Canada will be told by Laura C.
I, Laura V. will tell you about my struggles, O's battle, raising 3 kids and trying to make a difference. Laura C will tell you about her struggles raising 3 kids, with a full time job and running a foundation and keeping the memory of her nephew alive.

Two moms, two perspectives, one mission....Congenital Heart Defect Awareness.

Thank you for coming along for the ride,

Laura