Haven Turns Five

Haven turns five today.  And because we are as fortunate as we are, we will celebrate like any other family.  A few little things today, on the day of, and then a small party at the house over the weekend with some friends and family.  To mark her special day today, I bought her some balloons and I tied them to her chair at the kitchen table as surprise for when she comes down for breakfast this morning before school.  I will wish her a Happy Birthday, squeeze her tight and get her all excited for a fun filled day at school where she gets to tell all her friends and teachers that it's her birthday today, that today she is now FIVE.  I will watch her get on the bus, give her a wave and make some crazy faces as the bus pulls away and she'll make them back at me because she always does.

As each year passes and she continues to thrive and grow with her incredible post-Fontan one ventricle circulation, I am given the gift of celebrating the next milestone of my child like any other parent.  I get to focus on Frozen decorations and an Elsa cake.  All because, she didn't have any surgeries when she was four, she didn't suffer any major setbacks, we didn't face any life threatening situations because she lives with half a heart.  We had a completely normal and uneventful 4th year of her life.  And today, we celebrate all that she DID accomplish -- she didn't have to "survive" the age of 4 -- like she did the ages of 1, 2, and 3 instead she simply had to THRIVE.  And she did exactly that and more.

As she gets older, I look forward to seeing how she likes to celebrate her own birthday celebrations.  I want her to celebrate as she sees fit with me, her father and her siblings in the wings showering her with love and appreciation for all the amazing things she does and says and puts her heart and mind to year after year.  I want to be careful that as her mother I never selfishly define her birthday each year as a memorial to her heart condition, of all she endured, of everything she survived, of all the near misses and uncertanties that her future held in the beginning...the slow three year trek we made together with "there are no guaranties" slowly emerging into magical certainties as each successful surgery passed.  The slow and steady realization that something we were never certain we could have might just end up being the very thing we had always dreamed of -- a healthy, normal, childhood and life for our little girl.

And yet, while I look at my happy healthy smiley five year old daughter -- I can't deny that about two bars into the tune of Happy Birthday the tears are already in my eyes.  I can't soon forget that during some of our darkest hours during the pregnancy and at the hospital during the first several months of her life, my husband and I would white knuckle each other's hands and try to visualize a little girl dancing, running, spinning around, and laughing out loud with her siblings -- we were literally attempting to will her into existence away from the reality we were living with all the tubes, wires, blood and gore, florescent lights and the incessant sound of beeping machines around our brand new baby girl.  And so today, when I saw my five year old wave to me from the bus on her way to school on her fifth birthday -- it's quite literally watching a dream come true -- she IS the child we envisioned that we hoped and prayed would someday be:  five.years.old. 

So, in that sense, I think it is worth taking a a moment, if even just a small moment, to remember her heart condition, to remember her journey, to remember that nothing was guaranteed, out of respect for the beautiful life we have together today -- in that sense it is important to remember.  We must respect how we got to today.  How we got to FIVE.  

Because every year, every minute, with any of my children,  it's a gift.  Thankfully in the case of Ronan and Tommy -- it hasn't been so directly threatened as it has been with Haven.  My heart aches at the mere notion that Ronan or Tommy could ever be taken from me.  With Haven, my heart did ache because that threat was very real.  Her mortality will forever be a very real thing.  I have to pay respect to that fact or otherwise, I would feel like I was shirking the good fortune that has been allotted to us -- and that so many, many other heart families simply do not have.  Those families -- they would give anything to live in our shoes for just one day of normalcy.  At the risk of "dwelling" on Haven's heart condition as she gets older -- I think it would be disrespectful to move on without each year thanking our lucky stars.  Literally.

So here's to the truth of your life, my sweet Haven.  The fact and reality of your heart condition and the journey we've shared together to get through each and every day to have you here today.  Let me just say, if this is what you've endured in your short little time here so far....if this is your beginning... I can only imagine what you have in store for your middle and your end, sweet girl -- the world will only benefit from having you so preciously and carefully kept within it:

And in honor of all the lovely, fabulous, things you bring to our lives and the lives around you on a daily basis -- and in honor of the "normalcy" of not only your birthday -- but your life -- Happy Birthday Haven, the world wouldn't be half the place it is without you in it.  We will be forever thankful:

Ella Turns Five

Today, Haven's closest little heart buddy, Ella turned a whopping FIVE YEARS OLD.

Incredible.  Amazing really.  A major triumph on about a million different levels.  The courage of this family, who received a similar diagnosis to ours during their second pregnancy, learned that their baby would be born with a life threatening heart condition that would require at least three open heart surgeries with no guarantees.  A couple, blindsided by this diagnosis and facing all of the same unknowns that Brian and I were faced with but with a three year old precious boy at home to care for in addition to their heart baby.  And sweet Ella -- a little girl, turning five years old today who has had the strength, courage, and otherworldly perseverance to survive three open heart surgeries, seven cath procedures, one very scary heart block, and two cataract surgeries in her short little life.

Our families have been heart friends since Ella was about nine months old and Haven three months old.  We were on the same surgery path (as much as any two heart kids can be on the "same path" when clearly no two human anatomies are ever exactly the same therefore making each child's heart journey unique unto themselves).  We provided support to each other through all of our combined surgeries and cath procedures and all the poking, prodding, worry, tears and fears that go along with it.

We were "fortunate" in that Ella was six months older than Haven and therefore ahead of us on the surgery path.  Each step of the way, Ella would go through one of the surgeries and then we would follow -- so we leaned on them for everything they had learned and experienced each go around.

Ella had her third and potentially final open heart surgery, the Fontan, in April 2012.  One year later, Haven had her Fontan.  During Haven's hospitalization for the Fontan in April 2013, in one of the more freakishly random occurrences in our lives, Ella was unexpectedly scheduled for a cath on the same day as Haven.  The two girls underwent cath procedures on April 22, 2013 and shared a hospital room together on the recovery floor.  We have the adorably sweet and slightly heartbreaking photos to prove it.

Here's where our shared paths begin to diverge and start moving in two entirely different directions.   At the time of Haven and Ella's cath overnight slumber party (if you can call it that :) Ella was almost exactly one year out from the Fontan.  Things were supposed to be looking a lot better inside Ella's body.  When you are given the goal during your pregnancy to get your kid through three open heart surgeries -- the end goal becomes getting to the other side of that third surgery, the Fontan.  And while your kid will never be "fixed" necessarily -- the Fontan circulation, if successful, will keep them alive on half a heart into their 40s -- god willing even longer.  In your mind's eye -- the closer you get to that third surgery -- the more you allow yourself to start thinking about "life after the Fontan" -- you begin to get giddy about the potential "normalcy" that might be just around the bend.  It's all we can focus on and all that we can hope for since the moment any of us recieved our original diagnosis.

By October 2013, a year and half after her third surgery, it was determined that Ella's Fontan circulation had failed.  The half a heart they tried to salvage through the three surgeries would no longer sustain her.  Ella was officially in heart failure.  Ella's cardiologist and surgeons did everything they could by completing the three surgeries.  In her case, it didn't work.  We don't walk this road preparing for let downs like this…you have to stay positive the entire time in order to make it through.  You can imagine this family's disappointment in not having the charted path work out the way they had planned.  Having the wind taken out of your sails would be putting it mildly.

April of 2014, for our family, marked one year since Haven had her Fontan.  Her Fontan circulation is working great.  She is pink instead of blue, she has loads of energy, her gross motor skills have improved drastically, her cardiology appointments are now once a year.  The other side of the Fontan for our family has been everything we hoped it would be.  We are lucky.

April of 2014, for their family, marked two years out from Ella's Fontan, and unlike our story, Ella was transferred from her regular cardiology team to the Transplant Team at Children's and was listed for a heart transplant.  Two families, connected by a shared experience over the past four years, and now, two completely different outcomes.  There is still so much hope that we can all end up back on the same path.  We're just going to have to will the outcome we all want into existence -- we just gotta get back onto that same page.

On December 10th it will be eight months that Ella has been waiting for her new heart.  The "average" wait time for someone like Ella to get a new heart is 3-6 months.  Eight months.  It's hard to imagine that someone can live with heart failure like Ella has.  But they can, because we are in Boston, and at Boston Children's Hospital they have hundreds of tricks up their sleeves for keeping Ella's body going while they wait for her new heart.  Thanks to a backpack Ella wears 24-7 which pumps a miracle drug called Milirone to her heart, around the clock, Ella is one of the only kids EVER to be able to stay at home rather than be admitted to the hospital for the entire time she has been patiently waiting for her heart.  Can you imagine how even more difficult this already ridiculously difficult road would be if Ella had been living in the hospital for now what is approaching over 250 days?  Can't.even.think.about.it.

And let's not forget what waiting for a new heart means.  It means a devastating loss in someone else's family.  It means the heart breaking decision a family has to make in that indescribable moment of having lost their own child to somehow also come to terms that somewhere deep down inside that kind of devastation there lives the tiniest flicker of light for another family to get that second shot with their own child.  Their loss becomes Ella's gain.  And then the clock starts ticking.  There's only six hours between those two events where this can all work.  The most intricate pattern of stars must align at the perfect moment for a match to be made for Ella and for Kate's phone to ring with the news that it's finally time.

To say that the waiting has been close to unmanageable for this family would be putting it lightly.  Beneath the medical jargon, all the doctors & surgeons, the hospitalizations, the surgeries, the medications, the specialists, the therapies, and the visiting nurses….there is a mom, a dad, and a little boy.  A marriage and a sibling.  There is school and work, and extended family.  Weddings, funerals, and holidays.  Groceries, bills, and a house to clean.  Kids get sick with regular colds, are put in time-outs, and go to birthday parties.  Life still happens to a family put on the transplant list.  It's the combination of the two that sometimes feels like you just don't have what it takes to survive something of this magnitude or to see it through to the other side.  Let alone do you dare ask what the other side even looks like?  Will we make it?  Will we be ok?  Will Ella be ok.

I have to admit to my own "survivors" guilt around Haven's working Fontan circulation.  It's hard to wrap your head around how two similar stories could have gone in such different directions -- it just as easily could have been us on this path.  There is no rhyme or reason to it.  Why us and not them, or why them and not us?  Why?

So….you stay positive.  This family always has.  They get up just like everyone else.  Put one leg in each pant leg and walk out the door.  Waiting for the phone to ring.  Literally.  To gather a few things, head to the hospital, to finally go get Ella's heart.  Hoping and praying that the heart will be perfect, Ella's body won't reject it, that when it's all over -- she will be as pink and as rambunctious as Haven.  That this family can have their lives back.  Their marriage back.  That Logan can have a healthy sister to play with and not spend his own little life worrying for his parents or for his sister.  These will be the gifts that this heart, that we are so eagerly awaiting to arrive, will bring to this family and the rest of us who love them.

Ella is a Thanksgiving baby in so many ways.  I am so thankful she was born into this world, I am so thankful that her spunky attitude and sassiness has remained intact through everything she has already been through and for everything she is about to endure, I am thankful for my friendship with her mother, I am thankful for Children's Hospital and their seemingly endless bag of tricks, I am thankful for Haven and Ella's relationship and for the many lessons these two little sunbeams have brought with them to planet earth.

Please sign up to follow Ella's heart page and surround them with the positive energy and support they need as they wait.  And on this Thanksgiving…..be Thankful.



Watching this video makes it just a little sweeter of a Happy Thanksgiving, doesn't it?

October 11, 2014

Looks like a couple people who would be the insert in a new frame you bought at Target, right?  Right.

Well…That handsome devil is my brother and the gorgeous woman next to him is my new sister-in-law.  And the insanely amazingly talented Adam Amengual, and best friend to my brother, took these incredible photos.

On October 11, 2014 my not-so-little-anymore-brother got married and I had the indescribable honor of being my brother's Best woMan.  As his only sibling, I mean it quite literally when I say it meant the world to me.  And the best news is, I had recovered from my gender reassignment surgery in time for both the bachelor party and the wedding.  Kidding.  Well, sort of.  I almost won the gokart race at the bachelor party and I wore a jumpsuit and a tie alongside the groomsmen at the actual wedding but you can easily go to my instagram account to see how that all played out for the cameras.  In addition to recovering from my recent post-op, I am nursing a pretty good sprain in my instagraming finger from all the photos I posted (cut me some slack he's my only sibling).

As the Best woMan, I got to toast my brother.  Something I wish I could do each and everyday of my life if there was a way people could smother the people they love with just how much they love them on a daily basis.  Social media should do something about that. Maybe an app or something where you can post wedding toasts you've given (because seriously who remembers the toasts after a night of drinking) and eulogies for people who are still alive (because how much of a rip off is being dead and not getting to hear our own eulogies?  Very annoying in my opinion).  The clincher would be that in order to "like" a post you'd also have to include a photo of yourself ugly crying after reading it.  I think I'm onto something here….

Ugly cry and all, it was a major honor to toast my brother.  And equally as awesome to wear a jumpsuit for the first time.

And because my brother is the single most important person to me outside of my parents, husband, and kids and since there isn't a Toast/Euology app yet, it's important for me to shout at the top of Internet Mountain just how much I love my bro:

It was hard trying to figure out how to summarize all the things I felt like I wanted to say today.

Dee….Do I give you “how to live under the same roof as Mike Goggin survival tips?”  When my advice would be coming from an eighteen year old’s perspective, let alone over 20 years ago, since technically that was the last time we lived together?

Do I say all the standard cliché things about finally getting the sister I never had?  When in truth that’s the exact thing I am very much looking forward to even if it is cheesy to admit?

Do I roll my eyes like the stereotypical sister-in-law and insensitively say, “Oh you just wait until you have kids!”  Because I’m secretly jealous that you and Mike still have a social life? (or maybe not so secretly jealous?)

Do I complement you for the bazillionth time about how awesome you are with my kids and how natural you are at being a kind and loving adult to literally any child that you come in contact with?  Because I could seriously write a list of all your motherly attributes that I wish I had in my own personal arsenal but it would be hundreds of pages long and everyone knows I talk enough as it is.

Do I give advice about marriage?  When I am still learning so much about it myself? 

Maybe instead of all that – I’ll just tell you this:

Words cannot express how much my brother Mike means to me.  He is the only person who was raised under the same roof as me, he is the only person who carries the same Judy/Emmett DNA as I do, he is the only person who has been continually by my side and in my life for as long as I have memories to remember. 

When you know someone in that way and when you share that kind of bond together – you know in your heart when things are right for that person and when they are wrong.  Since the moment you and Mike decided you would give this ‘ol relationship thing a whirl – I have never seen him be so….right. 

There is something about you that lights up his world in a way I can honestly say I have never seen in all of his 33 years.  He is so committed to you, to your health and to your happiness that I couldn’t feel more proud of him and more happy for the two of you that you have decided to embark upon the wild and crazy journey together that is marriage. 

So let me say this, October 11, 2014 will forever be one of the most important days in my own life as I vow to both of you that I will always be here for each of you – individually and together as a couple – no matter what – rain or shine. 

I promise to always be right by your sides for your victories and celebrations as well as for your struggles and your challenges.  And as each year and each anniversary passes, with all the good and the bad that life will surely throw you -- as it does with any of us – each year, I promise to recommit myself to always being an available, consistent and continued support to you as the amazing individuals that you are, and that I love so much, but also as a support to you in your marriage to one another -- something I promise to always help you keep safe and secure over the years.

And Mike...there's just one last thing I want to say to you.  As I stand up here now with three kids of my own and as I'm watching Haven, Ronan and Tommy grow up together -- of all the gifts that Mum and Dad have given us -- and there have been many -- the greatest gift they have ever given me, was you.

With love and a continued commitment to support the two of  you, Mike and Dee this October 11, 2014 and every October 11^th to come…congratulations…there is so much to celebrate today and so many more wonderful celebrations to yet to come.

Cheers, to that.

Kelley

October 28, 1976 - August 12, 2007

"Never grow up...

never say goodbye, because saying goodbye 

means going away and going away means forgetting"

 -- Peter Pan

As Good As It Gets

Sometimes I give myself a hard time for feeling like the current state of my life has me by a stranglehold.  That I really need to work on being more present, more appreciative, happier, less frazzled, try to eat better, not drink so much, find time to relax, and sit back and relish all the things that I am so fortunate to have.

I really and truly probably reflect on this at least once a day.  Sometimes before bed when things are finally quiet (and I can actually hear myself think) and sometimes right smack in the middle of a toddler tantrum during the day.  In that moment, I'll think about taking a step back, trying to slow myself down, hell -- slow everyone down around me because let's face it -- in just a couple short months my youngest will turn one and as each day passes I am that much closer to having THREE toddlers on my hands.  So the word SLOW doesn't exactly describe the current activity level in my household.  I try to slow everyone down, including myself, but it's impossible.  It's just freakin' impossible.

February 11th.  My last blog post.  The last time I was able to find the time I needed to sit down and unload an emotional dump onto the internet (which is such a weird thing to do in the first place but hey you gotta do what you gotta do to keep yourself sane, I guess).  I mean seriously?  It's June for christ sake.  But then I got to thinking about what it is about my life currently that makes everything so crazy, such a blur, so hard to stay on top of or feel any sense of "sit back and smell the roses" kinda feelings.  

And then the amount of shit that has happened in addition to the daily grind since February all started to come into view:

Heart Awareness Week ended on Valentines Day -- a week long reflection on my daughter's CHD, her best little heart buddy's CHD, all the things we've been through to safely get her to being four years old and going to preschool.  And all the other heart warriors who continue to fight for their lives, struggle through surgery after surgery or are born every single day and start this journey from the beginning all over again.

Valentines Day also marked the day my brother and his fiancé closed on their new home together.  They are starting a brand new life together with a limitless future ahead of them with all the ups and downs I am now looking back at.  I never want to be that older sister who is so frayed at the seems that it's hard for me to even remember let alone acknowledge that sense of amazement when you first start out and that undeniable feeling that this is the beginning of the rest of your life and you are so in love and excited for all the things to come that you sincerely feel a sense of magic.  Because it is.  It is magic.  And kind of that circle of life stuff.  You get me.

Our six year anniversary was Saturday, February 22.  And leading up to this day a very close friend of the family was dying of cancer.  Amidst the craziness of my husband gearing up for his busiest time of year (tax season) and the day-to-day insanity that the three kids bring - we ignored the horrible New England weather and made any adjustment necessary in our schedules so we could be with this family (who is quite literally a part of our own family).  We wanted to be with them and there for them as often as we could.  When she was taken to hospice on Friday, we made sure we had a sitter on Saturday so we could head up to see her.  We held her hand and told her stories that made us all laugh, we told her how much we loved her, impressed upon her the impact she made on each of us (not to mention all of our children), how much we were going to miss her and just how hard it was going to be for us to let her go.  Unbeknownst to any of us that afternoon, she passed away with her family and us at her bedside.  We weren't just worried about how we were going to let her go.  We literally witnessed and experienced the very act of seeing her leave.  When you watch someone you love who has given you countless amounts of advice about how to live, how to be, and how to get by in the world -- because she's been there -- because she knows & has that kind of life experience -- when you watch them go right before your eyes and in an instant you realize you are left behind to keep forging ahead without their priceless advice and counsel -- and when you painstakingly watch your closest friends lose their mother right in front of you and there is nothing you can do to fix it for them....in that moment, I was in awe of just how complicated and just how simple this whole thing really is.  You come into this world in a split second and you leave in one too.  It's all the stuff in between that's as amazing as it is awful.

Digging out from the emotional wrecking ball that was Anne Marie's passing was hard.  It was hard to watch the people closest to you in pain knowing there is nothing you can do to make things right.  It was heartbreaking to see the grandkids suffer the loss of their grandmother and all the missed moments and memories that still could have been if it weren't for the cancer.  It was harder than I expected to let go of our youth and our memories together and to watch sons and daughters have to grieve the loss of their mother while still having to be mothers, fathers, sisters, brothers, and spouses all at the same time.  Everyone is wearing multiple hats during this phase of our lives.  When we suffer our own losses we have the added responsibility now of navigating that loss with our children.  We are moving into that time of our lives where we are losing our parents and our bond with our friends and their kids becomes even stronger as we become surrogate families to one another.  This next stage of our lives will undoubtedly be filled with stronger bonds with our friends than we ever could have imagined at one point -- and yet the loss that has to be suffered by all of us before we get there is great.  It sucks.  And once again, it's as amazing as it is awful.

March 4.  Haven's 4th Birthday.  Another reflection of how life goes on.  And when it comes to Haven -- each year in the life-goes-on category is huge.  If we being reminded daily of how just how lucky we are isn't enough -- you can imagine her birthday is a full-on-blow-your-mind event when as we are singing Happy Birthday together all those original fears and worries that we would never have our little girl make it out of infancy and then there she is, sassy as hell, blowing out her candles with all 88% of the saturated oxygen her body as to offer.  Pretty awesome.  Totally incredible.  Unbelievably humbling.

Tax time.  March and April continue to be such hard times given that I'm a stay at home mom and my husband has five mouths to feed.  I think deep down we both want to find a better balance between making enough money to sustain us and having more time together as a family -- especially in light of Anne Marie's passing not to mention the constant awareness of life is too short that Haven's CHD brings.  But it's hard.  It's damn hard.  Brian works his ass off and feels guilty he's not more available.  And I work my ass off and feel guilty I'm not more "pleasant" at the end of every day at home with the kids.  We keep telling each other that this is temporary, that things will get easier as the kids get older.  But we know we are kinda lying to ourselves.  It likely will get easier once everyone is out of diapers and can at least pretend to be feeding themselves.  But for the most part, I really and honestly feel like we have to find some serenity amidst the madness.  If this is as good as it gets then we need to enjoy it more!  I feel like so many people I know with small families struggle with trying to ENJOY the young ages of our kids and all the memory making that goes on at this stage while not totally burning the candle so hard at both ends you can't even remember which kid it was that made you smile today.  

Dog gets cancer.  Yup.  Bella has the big C.  She's a bulldog and they are pretty much born into the hot mess category as far as dogs go.  But she's a part of our family, pretty much our first kid, and she's been a major rock for both Brian and I through a lot of crazy shit that we've suffered through so it was definitely a blow to both mine and Brian's knees when we found out.  We had to decide whether or not to spend an ungodly amount of money on having the tumor removed.  It wasn't an easy decision.  Brian is about to go out 100% on his own with his own practice and roll the dice with being self-employed with three young kids none of which are even school age (Hmmmmm.....THAT must be why he's not sleeping at night!)  He's a financial planner by trade so he's conservative and has a extremely well thought out plan on how to sustain the family with his own business -- but it's things like "Your dog has cancer and needs surgery" that puts your panties in a wad no matter how planful or financially savvy you are.  So we went forward with the surgery with the thinking that this will give her a better quality of life for her last few years since she's on the back 9 nine anyway.  She got through the surgery ok (although she literally looked like she'd been run over with a lawn mower, I'm not gonna lie, not a pretty sight.  AT ALL) and then I slept downstairs in the basement with her until we could tell she was on the mend.   Ya, you heard that right.  I slept downstairs.  With my dog.  And let her out every couple hours.  Just like the good ol days of having a newborn.  Seriously, when is this shit gonna end? 

Toddler insanity.  One of the biggest reasons I can never get on my computer to write is because holy shit do I have my hands full.  As I mentioned before, Haven's oxygen saturation is somewhere around 88%.  I have been joking recently that thank god it is because I can't even imagine what it would be like at 100%.  This little lady has some sass with a side of attitude.  Even though she's my sweet little girl with her adorable little voice and pigtails and just general overall cuteness....this is what I really see when she's talking AT me:

She's a bad ass.  And anyone who knows me just looks at me and says, "Really, Molly?  You are kidding me, right?  You aren't seriously questioning where she gets it from are you?"  And I'm not.  I completely and fully understand that every ounce of shit I dished out to my own parents (and oh lord, there were pounds of it) will now come back at me threefold.  But holy mother load am I ill prepared for the mind boggling task of discipling a toddler or helping her navigate the ins and outs of her new found bad ass self who likes to lie, talk back, and spit.  That last one still irks me to no end.  Spitting?  What the hell is THAT about?

This is all happening while my almost three year old, Ronan has become this guy: 

I have to assume it's because Tommy is now crawling and Haven is so overbearing with her verbally advanced badd ass self that he's decided to go gladiator on everyone and become a physical threat to all of us just to assert himself given his shitty status as the middle child.  He is hitting.  He is pushing.  He is smothering the baby.  Literally.  Just pressing his body weight onto Tommy somehow in the split second it takes me to go to the bathroom.  I'm thinking of wearing diapers myself just to get through this stage with Ronan because I feel like I can't leave him alone for a second without him concocting some plan to avenge his right to the throne by taking out his big, black, bad-ass older sister, while squashing the uprising of his teeny tiny leprechaun brother.

Which brings us to Tommy.  I'm not kidding about the leprechaun comparison.  I brought him out to see the St. Paddy's Day parade here in Southie and he downright looked like he should have been in the parade.  You easily could place him on the shelf of one of these Irish type stores on Broadway and someone would buy him thinking he's one of those chotchkie type porcelain pieces you put in your curio next to the waterford crystal from Ireland.  Here he is in all is Irish glory:

He also looks a lot like Robin Williams....

...but that's beside the point.

The reality is -- the blessings of having three kids close together comes with a lot of its own problems too.  Some stupid parenting book somewhere said, "Try to stop and think which of their needs isn't being met when the talking back/tantrum/crying happens -- so you can identify the need and then try to meet it before things get out of hand."  Which of their needs?  Which of their needs?  Are you kidding me?  They are 4, 3, and 1.  A LOT OF THEIR NEEDS AREN'T BEING MET.  All these parenting books or online advice just makes me feel like more of a shit than I already am.  I have to just think of mother's like Anne Marie who oftentimes had a hell of a lot more kids with much fewer resources and remind myself that they got through this somehow and not a single one of their kids is an axe murderer. See?  I had to go online to get a picture of a gladiator-- it's not like I had a photo on hand from my Instagram account of Ronan actually wielding a weapon and attacking one of the kids.  That's a good sign, right?

April came and went with good stuff and not so good stuff.  My entire family travelled to Bermuda to celebrate my Dad's 70th Birthday.  People have asked me what I thought of Bermuda and how beautiful it is and I had to tell them that in all honesty -- the limited amount of time I had my head raised from looking down at a double stroller or picking up melted granola bars off the ground --from what I did see... damn! it looked really really nice!  Traveling with three kids is never AWESOME.  If anyone tells you they were just on vacation with their three little kids and how awesome it was then they were blackout drunk the entire time.  But it wasn't bad either.  Over the past year, my father has been diagnosed with the early stages of Luis Bodies Dementia.  Very early.  But still.  In an effort to Carpe Diem things as a result of my Dad's recent diagnosis -- my mother planned this fabulous birthday in a rented house Bermuda and some amazing memories were made with my family:

April also came with the news that our fellow heart buddy and Haven's closest friend, Ella would be put on the transplant list.  Once again the wind was taken out of our sails in that no two kids are the same fighting this heart defect stuff.  And in a world where there is literally NO REASON for why Haven's three surgeries worked and Ella's did not -- it has been a scary realization for our two families that this battle is far from over for sweet Ella.  I can easily say that through all of this Ella's mother Kate has become one of my best friends on the planet.  Nothing forms a solid friend for life like having to navigate the life and death ins and outs of those first three surgeries together.  And there's nothing more important than having this friendship to lean on for this major hurdle that lies ahead for Miss Ella.  Ella deserves to get better just like Haven deserved to get better.  This heart stuff is hard.  And for their family -- I feel like they have already run three marathons and are still running, and running, and running.  I want them to have a picture of their family in Bermuda.  I want Ella to safely get a new heart and to start her life again.  I want Kate to finally get some rest and to have one worry free night to herself.  I want Logan to play and learn and laugh like a seven year old should without the constant worry I know he has for his parents and his little sister.  I want Chad to not have to fill the gap for little Logan trying to make things and normal for him as possible when Kate and Ella are admitted to the hospital.  I want them all to be together and not have to do this anymore.  I want it to stop for them.  So we wait.  We wait for it to stop.  Please god, let Ella get a new heart so this family that we love so much can begin to live again.

Well, Jesus...I guess that's why so much time went by between February and June.  I guess that's why it's sometimes hard to be more present, more appreciative, happier, and less frazzled.  To try to eat better, not drink so much, find time to relax, and sit back and relish all the things that I am so fortunate to have.  I know that I'm fortunate.  Believe me, I do.  It's just I don't have the bandwidth to feel as good about it all as I'd like to.  And as I'm learning from Anne Marie, my Dad, Kate and even my developing little toddlers -- this is just the way it is.  This is a good as it gets.  So I better keep trying to find ways to enjoy it more when I can.  Because as fast as things come into the world and into your life they can just as quickly leave.  I may not be able to slow life down but I will desperately try to unblurry the picture no matter how fast I'm going.

Being a Heart Mom during CHD Awareness Week

Congenital Heart Defect Awareness Week 

February 7-14, 2014

CHD Awareness Week means a lot of different things to us Heart Moms.  I think so many of us who end up being heart moms remember all too well that up until our diagnosis we literally knew NOTHING about congenital heart defects.  

We sure as hell didn't know they were the #1 birth defect.  

We definitely didn't know that 1 in 100 kids has a CHD or that one is born every 15 minutes.

Or that over half of them will required to have at least one invasive surgery.  

Or that twice as many kids die from CHD's than all childhood cancers combined.

Or that over half of SIDS deaths are estimated to be caused by an undiagnosed CHD.

Definitely did not realize that only 1 penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.  

That research to cure something so common and so deadly could be so underfunded.

That Haven's single ventricle anatomy is not a cure but a place holder for how long we'll never know.

Never in a million years did I think I could be that 1 in 100.  Or in Haven's case (with her specific diagnosis of Pulmonary Atresia with Intact Ventricular Septum) which happens roughly 4-6 times out of every 100,000 live births.  What the hell?  Seriously?

Becoming a heart mom on October 23, 2009 changed the direction, the perspective, and the world view of my live...forever.  CHD Awareness Week doesn't just matter to me, to my daughter, to my family or friends or my other heart mom friends and their kids.  It should matter to everyone because people simply have no idea how common it is.  It's important that people KNOW about it.  The numbers are just to great not to know.

Please...

Raise awareness, know the warning signs, donate to the Children's Heart Foundation which is solely dedicated to pediatric CHD research, or donate directly to a hospital working hard to advance research in this area, pioneers like the Boston Children's Hospital Heart Center (where Haven has undergone her three open heart surgeries) who could really use the funds for the amazing work they are doing to improve the lives of children living with CHD.

Some reflections from fellow heart moms on the Unexpectant.com  on why our journey matters:

“I never knew what CHD was or that it even existed, until I found out at 23 weeks of my pregnancy. I was told my son was going to have open-heart surgery at five days old—OPEN-HEART SURGERY!—and that he was going to have another one at six months old and then another one at two years old. I carry his heart in mine now and I represent him.” –Sonia R.

“Every time surgery comes, it takes everything you have to stay strong and remain standing because all you want to do is fall apart, but there isn’t time. You watch your precious child struggle through unimaginable struggle, which no adult could survive, and yet somehow they do. And then your worst nightmare becomes your new reality. Your child loses their fight.” –Sandra F.K.

“Being a heart mom means we are never off, although I know no mom really is ever off. But we look at our child and study every little detail and the tiniest of changes or differences with the eyes of a very seasoned detective. We are often waiting for the other shoe to drop, because it often does…many times. We know our child’s medical history better than any of our doctors. We know what to pack for hospital stays. We bond instantly with other heart moms. We often feel alone…especially at the beginning. Only other heart moms know how we feel. Our partners and parents can be awesome, but only other moms truly get what it is to know your baby or child’s heart is not healthy. We worry about insurance and medical bills, but don’t ever think of not doing something because of getting into more debt. We know more medical terminology than first year med students.” –Kristin B.R.

“We offer to help other heart moms, we want to share our story and help moms get through their journey. We get angry, sad and so scared, but we turn all that off when our child is in the room and dance for them if it will help. Some of us carry our babies into the operating room, hold our babe while they are sedated, and then kiss our baby and leave the room all without missing a beat….then we lean against the wall outside that room in our silly paper OR uniform and shake from our sobbing. We are strong, but no stronger than anyone else…we just do what we have to do. We hold our toddlers down, while they are poked and prodded, and sing silly songs, while our hearts ache for our child.” –Kristin B.R.

Being a heart mom means preparing yourself to pick up and head to the children’s hospital at the drop of a dime, never knowing when that moment will strike or what the future holds.  Being a heart mom means driving hours to the hospital for scheduled appointments, labs, procedures and surgeries, and sometimes staying there for days. Being a heart mom means knowing one day you’ll have to tell your child they can’t play sports, their immune system is weak, they may never bear children, they have to have major surgery and that they are very sick.  Being a heart mom means sometimes feeling very alone. Feeling like no one can relate. Feeling like you must put on your “strong face,” a mask of smiles.  For many heart moms, it means loss; planning a funeral-a burial site, a tiny casket, a headstone, a burial outfit, planning a speaker, music and more.  Being a heart mom means to forever try to make a difference, for the sake of our child.

For all heart moms, our lives change forever….

BE AWARE ~ SPREAD THE WORD

Business Time

Anyone in a marriage with small children can relate to this video.  And this couple doesn't even have kids!

Flight of the Conchords should update this song and add some lyrics about how even more unsexy your life gets after children.  Freakin priceless.