The Story of Brayden's Heart

(Reposting with a quick edit below in bold and red...oops)

The day my nephew was born is etched into my brain as one of those days that I'll remember forever.  The joy of watching my brother become a Dad, seeing the love on my parent's faces as they became grandparents (again) and getting to hold that precious little boy moments after his birth.  And then, in a split second, the news that would change us all forever -- his diagnosis of Aortic Valve Stenosis (AVS), a congenital heart disease. 

I've been quiet on the subject, as my brother and his amazing wife dealt with and processed all the ups and downs of this past year.  And, to be honest, from the first moments we learned of Brayden's condition, I've yet to be able to find the right words to help, comfort, sooth, encourage and, most of all, express my love. 

Why share now? 

In hind site, it doesn't surprise me.  My family has always been amazing and never ones to rest on their laurels.  My parents were never the sit-idly-by kind of people and from the first moment of Brayden's diagnosis a plan was set in action to help their beloved grandchild and his parents and the legions of other parents dealing with the same psychological, financial and medical issues that come with a similar diagnosis. 

And so out of endless love, devotion and a overwhelming calling to help our Brayden and other families in similar situations, was born my family's registered 501(c)(3) foundation -- A Giving Heart Foundation:  Big Hearts Helping Little Hearts Grow.  I do hope you'll visit the site and if you feel so obliged, make a donation to this amazing and personal cause -- 100 percent of your donation reaches children in need.

My beautiful, strong, the-kind-of-Mom-we-all-want-to-be, SIL wrote Brayden's touching story for the foundation's Web site and I wanted to share it with you:

"Like many parents, we weren’t prepared for the day Brayden was born. We’d chosen that weekend to move and, generally speaking, I don’t think any first time parent is prepared until they are holding their beautiful baby in their arms. It’s like a switch flips and you want nothing more than to protect and love them. The amount of love that instantly grows is immeasurable; we were on cloud nine. So when the pediatrician stopped by for a routine visit, we didn’t think much of it. All of the tests done while I was pregnant came back perfect, why would anything change now?  And then she told us that Brayden had Aortic Valve Stenosis (AVS). In an instant, it felt like all of the air had been sucked out of the room. 

The next month, we were living under water.  Shuttling our innocent little bundle to doctors for echocardiograms, researching AVS and trying to make sense of what was happening.  And then, the day before Brayden turned one month old, the decision was made that doctors would need to intervene and do a balloon procedure on Brayden’s tiny, baby heart. We were to report to the hospital the next day at 6 a.m.  This is when we met Dr. Hijazi. We weren’t scheduled to see him, but another doctor working at a different hospital.  But a family friend recommended Dr. Hijazi, claiming he was the best of the best.  After a quick online search, we were sold.  He is an expert in his field and his accolades endless.  My husband, called Dr. Hijazi’s office to explain our situation and Dr. Hijazi immediately called back. Though he was scheduled to leave town, and had never met Brayden, he agreed to meet with us.  He said that if he agreed the procedure needed to be done, he would stay and do it.  At the same time, I was speaking with our insurance agency.  Not only was Dr. Hijazi out of network but, our insurance agency had dropped Brayden from our plan that day due to a system glitch.  At the 11th hour, the glitch was corrected and we were told the costs would be a maximum of $5,000.  At this point, costs didn’t matter.  We would have sold our souls to make this procedure happen.

The morning at the medical center is a blur.  I was a mess; Mike was holding it together (one of us had to).  But once we spoke with Dr. Hijazi it somehow seemed a bit better. Mike was shocked at my lack of worry once we left Brayden in his capable hands.  In my mind, this guy was the cream of the crop.  And not only is he extremely talented, he is personable, understanding and, for some reason, I trusted him.  After three hours of pacing the floors, we met Dr. Hijazi in the hall and he smiled immediately.  I broke down in tears again, this time out of relief.  He said the procedure was extremely successful and Brayden was recovering well. It was like the weight of the world had been lifted from our shoulders.

Since the procedure, Brayden continues to grow strong and is living a normal life like any other kid.  He’s met or exceeded every milestone outlined for his age and has a great personality.  But, while Brayden’s heart is healthy, we still have fears for the future.  Brayden will need another balloon at some point, as well as open-heart surgery to replace his valve.  How will we explain this to him as he gets older, how do we push our fears aside and focus on our healthy little boy?  We were also left with a mountain of bills from our insurance company that far exceeded the original amount discussed.  Thankfully, Mike’s father made it his personal mission to negotiate those costs.  And Mike’s mom is a psychologist, which has been a huge help in calming our minds.

But not everyone is as lucky as we are.  Not everyone has a “simple” case like Brayden – though I see nothing simple about congenital heart disease.  Not everyone’s parents like to navigate the legal/insurance system, and not everyone’s parents are able to provide the emotional support that’s needed. 

And that’s why we’ve created this foundation.  Will it benefit my son when he needs to have his valve replaced - yes.  But, I’m hoping it will also help families like ours - those just starting out and not emotionally or financially prepared for the worst-case scenario.

I still spend a lot of sleepless nights asking myself what if, and that’s when Mike reminds me that we’re doing our best. And that’s all you can do."

You can also check us out on Facebook and please "Like" us, it would mean a lot to me!

From my heart to yours,
Jen

Happy Belated Mother's Day

Last weekend/this week was a hectic one.  Aside from finally getting to attend another birth (story to come, I promise it's worth the wait!) we had a family birthday party, final preparations for getting the house on the market (gulp!) and day-to-night pampering of all the Mom's in my life (me included!) for Mother's Day.

What am I trying to say?  This post is overdue and I know it.  But, I couldn't pass up the opportunity to share with the world how truly blessed I am to have the most amazing mom in the entire world.  She is the glue, the peanut butter to my jelly, my best friend and role model all wrapped up into the most amazing mom, grandma and human being who ever graced the earth.  I wrote this for her 60th birthday last year and I wanted to share it with the world:

Thanks for...

...never, ever, ever giving up on me.

…loving my husband like one your own.

…always making sure I had something cute to wear and painstakingly helping me find the perfect one!

…never letting an opportunity for us to talk about something pass us by.

…showing such love and devotion to my children – not because you have to – but because you want to!

…helping me find my true self and leading (never forcing) me to find my better self.

…being generous beyond words.

…not sending me to boarding school.

…helping me see things in a different light, a gift you give me always, probably without even knowing it.

…helping my brother and I see the potential, growth and importance of each other.

…never allowing me to just take the easy road.

…always being the keeper of my secrets.

…loving me for who I am, but never failing to see my potential and helping me get there in a kind way.

…allowing me to see what true love looks like and teaching me the kind of wife I want to be.

…Tuesdays. My kids love it and I always look forward to coming home from work and having you there.

…always doing more than is expected or asked, like bringing dinner for my kids and stocking your house with the ever-growing and ever-changing me-approved products.

…letting me share your Miraval experience with you.

…taking my passions and making them your own.

…researching things that are on my mind to educate me or ease my concerns.

…giving me the vital tools for survival…from what to eat to cure all that ails to must-have beauty products to how to shop ‘til we drop.

…being okay with no bathroom breaks during shopping BUT always making time for lunch.

…having the remarkable stamina of a 19 year old.

…being a shining example of pure beauty on the inside and out.

…the best and most coveted hand me downs around!

…helping me overcome my many anxieties in a patient and kind way.

…being my role model.

…touching so many people’s lives, just by being you.

…teaching me that you can follow your dreams and be an amazing Mom too.

…and, mostly for giving me all the tools I need to be a great Mom. It’s easy, be just like you!

May this remind you of how loved you are by your family, friends and legions of patients whose lives you have bettered. You, my Mom, are my hero today and always! I love you!

But, here's the deal.  I hit the jackpot in the mom department...twice.  My MIL is, hands down, one of the most unbelievable, selfless, kind, sincere, hard working women I have ever met.  She has this hard-to-put-into-words calming effect on everyone she meets.  There is a sense of serene, just by having her presence in a room.  She loves her children and grandchildren to the depths of her soul and would gladly give the shirt off her back if it meant helping someone in need.  

I love her commitment to woman's rights, even if I don't religiously read the subscription to Ms magazine she gave me.  I love spending time with her in the kitchen talking about nothing and everything.  I love that she held my babies in her arms all night long, just so I could get a few hours of uninterrupted sleep.  I love her stunning red hair and understand her disappointment over not getting a red headed grandchild - yet.  I love her ever-so-sweet demeanor yet ability to curse like a truck driver during anything competitive.  I love that she raised three boys who can all do their own laundry, cook, not freak out over a tampon and that simply adore each other.  I love that she ALWAYS takes my side.  I love that she isn't afraid to put me in my place, as I often lose my way.  I love that she doesn't roll her eyes when I freak out about sleeping arrangements or food for the kids, even though I know she wants to.  I love that she treats me like the daughter she never had.

Happy Mother's Day to the two women who guide me as a Mom and person each and everyday.  I love you!

And, happy, happy to all the Mom's out there.  I know the "official" day is over -- but I frankly think for all we do, is a week of celebrating too much to ask?

Stopped Me In My Tracks

Sometimes something I read or watch stops me right in my tracks.  The sheer truthfulness of the words or the overwhelming feeling that the person is speaking directly to me just shakes me to my core.  I had one of these hit-me-over-the-head moments yesterday and I just had to share. 

This video, of one of the miracle survivors of the US Air Hudson River plane crash sharing his story, is short, simple, to the point -- and quite possibly life changing.  I hope it leaves you thinking about your life a little differently too.  I'm quite sure the message will change me and follow me for a long time to come.

http://www.ted.com/talks/ric_elias.html?utm_source=newsletter_weekly_2011-04-26&utm_campaign=newsletter_weekly&utm_medium=email

The State of Jen

I write blog posts in the shower.  I write blog posts when I blow dry my hair.  I write blog posts on the train going to/from work.  I write blog posts as I fall asleep at night.  Such an amazing, dedicated blogger...one would think.  Except there is one teensy-weensy problem.  I have yet to figure out how to actually find the time to turn all these unbelievably witty and thought-provoking daydream posts into, you know, actual ones. 

While on the subject of finding the time...I had a meltdown on the way home from work today.  Lately, I feel like I suck at my job, suck at wifedom, suck at home, suck at taking care of myself and just in general suck at life.  I'm telling you, admittedly, I'm still not sure I fully recovered from the nanny leaving.  My supportive and amazing husband just held my hand and listened to me rant and rave (and sob, I might add) as I shared with him my feelings about just overall sucking at finding balance these days.  Then, ever so matter of factly he said he feels the same way and that he guesses the only way to truly find more time in the day is to just sleep less.  Awesome.

Anyway...

It has been a very busy past few weeks.  There has been so much I've been wanting to post, but I couldn't open my eyes -- literally -- for an entire week!  Oh, where to start...

1.  This is how I spent all of last week:

Hubs and I went out on Saturday night for a friend's 40th birthday.  We went to one of my favorite places -- a dueling piano bar that plays music that makes you want to stand up and dance.  And, so I did.  And, so did my friend.  We got so into our moves that her elbow accidentally found my eye.  It hurt a little at the time and kept watering, but didn't really seem like that big of a deal...until the next morning at 4 a.m. (probably when the alcohol wore off!)  I couldn't open my right eye without excruciating pain and just the strain of trying to see out of my left was too much to bear.  So, after a trip to urgent care (in which the hubs walked the kids in the double stroller and me down the street with my eyes closed) and a Opthamologist (in which I had to be wheel chaired out, due to my lack of food and abundance of pain pills), it was deemed that I had a very major and very large cornial abrasion.  I literally spent 3 days straight in bed - unable to watch TV, read, be on the computer or do just about anything else.  Thank the lord, I have unbelievable friends and family that dropped everything to help!  And, my days were brightened by flowers from friends and a hilarious card that read, "Next time you get into a cat fight at a bar, be courteous enough to take video."  Hee hee.

2. Sadly, I had to call off a volunteer doula shift last week.  I haven't been to a birth since January and I really, really want to!  Keeping my fingers crossed for May!

3.  Our house is going on the market at the end of next week.  Gulp.  Apprehension is really setting in.  I'm so ready for suburban life, but also so not.  The thought of keeping the house psychotically clean makes me physically ill.  Oh, and, we still haven't solved that little problem of where to move next.  Aside from the annoyingness of it all, I truly know its time and am excited for what lies ahead.

4.  And, I saved the very, very best for last.  The newest member of our family was born on April 7.  Hubs middle brother and his wife (who just happens to be my HS friend) welcomed their third baby into the world, a truly precious and adorable little girl.  I now have two nieces and two nephews...who is luckier than me?  I couldn't get enough of snuggling that little baby.  Is there anything more amazing and perfect that newborn babies?!?  Man, do I just adore being an Aunt.  I really, really do.  This little girl just captured my heart at first glance.  I can't wait to spoil her rotten and tell her as much as I can how much I just adore and love her (and her big sister and brother too!)

My SIL rocked, really!  The baby had been breech starting at about 35 weeks and she painstakingly committed herself to all the chiropractic-acupuncture-therapy appointments she could to get that baby girl to turn without medical intervention!  She eventually went in for the version procedure to turn the baby, got to triage and ended up going into labor naturally and when they examined her, the baby had turned head down.  I guess its true that third children are so easy going and accommodating! :)

Thank you, from the bottom of my heart, for continuing to read and support me, even thought my posts are never as frequent or amazing as they are in my head!

My Boy

At this exact moment four years ago, at 3:20 p.m. on April 12, my life changed in an instant.  At that second, when I first layed my eyes on my newborn son, the air felt different, the world around me seemed to stop in time and I could feel, from the depth of my soul, love like I've never felt before.  I knew becoming a mother would be monumental, but in the calm of those early moments of us breathing the same pocket of air, it became clear to me that I was put on this earth for that little boy and later his sister.

Today, I'm the mother of a four year old.  Where does time go, really?  All those days I prayed for him to get a little older so he could sleep through the night, get out of diapers or be able to play by himself...now, I find myself craving to go back in time.  I catch myself mesmerized by his big, blue, full of life and wonder eyes and his way-too-grown-up, perfect face trying, with every ounce of my being, to remember the way his newborn skin felt and the exact position he would snuggle in my arms as he dozed off to sleep. 

But, if his 4-year-old self is any indication of the boy and man he will become, I also feel myself about bursting with pride.  I just love everything about him and marvel at the intensity in which this little human brings joy to my life more and more everyday.

My darling boy -- where do I even start?  These past few months, I have watched you in awe take those last precious steps out of babyhood.  Your true personality is shining through more and more everyday, revealing a vivid imagination and endless sense of wonder, an unmistakable passion -- bordering on obsession -- for the things you love most (at the moment being Thomas the Train and Disney Cars and Toy Story) and a sweet shyness that as moments pass turns into a hidden, sweet smile and then comfort and calm. 

You're never the most outgoing or loudest in the room, but instead I catch you watching, observing and learning.  And, when deep in play, when it seems like you aren't paying attention at all to the world around you, you're the first to pick up on tensions or unrest and your mood shifts instantly. 

You seem to be more in your element when with a select few, versus a large group.  But, also the kid that after a few moments of assessing the situation can adapt to an unexpected situation and go with the flow.  You like to play with older kids -- especially your beloved cousin -- but are also at-ease with the younger ones.

The past few months have brought more change than you have known since birth, with your beloved Marta leaving.  As your Mom, I always go out of my way to protect you from pain or unrest and I ached for your little heart as I watched you try and make sense of her departure.  I sat awake at night with fear of how you would get through.  And, of course, as you always do -- you amazed me.  You were brave and strong and could express your sadness when you needed to.  You were understanding and calm and welcomed our new normal with trepidation but an open mind.  Such a huge life lesson from my little man.

You love your family to your core and seem happiest surrounded by your legions of grandparents, aunts, uncles, cousins (and all the pseudo aunts, uncles and cousins in your life).  And, to them, your mere presence lights up a room and endless hugs light up the lives all around you.

Your sister is the luckiest little girl on the planet, because she has you.  No one makes her feel better when she's sad and no one can make her smile and laugh more than you.  The way you look out for her brings me such comfort as I know she is set for life.  My heart nearly busted out of my chest when Ellie's teacher told me how you two hug each other like a lifetime has gone by, when you see each other in the halls at school and how you raced to the nearest adult you could find in distress when you realized your sister was sock-less at the indoor playground.  And, just yesterday, after you received the gifts you've been waiting for with baited breath -- the real Buzz Lightyear and Woody -- you let your sister hold them - both - only moments after opening them.  The best part, you do things like this all the time.  Not because anyone tells you to, but just because you want to. 

I love how you have your Dad's spirit (yep, the very one that got him in more trouble than you are EVER allowed to know).  Just like him, you're quick with a joke and love to see just how far you can take something before you really get in trouble.  But, in a pinch, more and more I can count on you to be a great listener and know right from wrong.  And, while it seems I passed my love of routine and need to be prepared for what's ahead to you -- you're also way better at bouncing back from disappointment than me.  You're teaching me to not sweat the small stuff and that a big hug and belly laugh really can cure all that ails.

Happy 4th birthday my darling.  I plan to give you about 10,000 kisses as a gift, as I'm just not sure how much time I have left where that will still be okay. 

Your Dad, sister and I, oh how we love you, right down to your very core.