Make a Wish

This is Ella.  Through another set of very random events, I was fortunate enough to be put in contact with Ella's mom not long after Haven was born.  Ella and her mom will always hold a special place in my heart because they were the first heart family I connected with and have been a huge support to me since this whole thing started.  Haven and Ella are both seen at Children's Hospital Boston and they share the same amazing surgeon.  Ella only has the right side of her heart, and Haven only has the left.  Too bad we can't smoosh them together so they can have the full functioning heart they both deserve.

It's sometimes hard to conjure up just how alone I felt when I first received my daughters diagnosis.  But after meeting this family, who is also from Massachusetts, who shares the same surgeon as we do, with a similar three surgery path, and a mom who could relate to all the fears, worries, and stress I was experiencing -- it was like someone had sent her down to me from heaven.  I have spent countless hours on the phone with Ella's mother, sharing war stories, asking questions, worrying together, getting angry together -- and most importantly laughing together.  You would think the severity of all this would leave little to laugh about.  But laughter is the greatest medicine in the world.  And Ella's mom and I have overdosed on laughter more than a few times through this mess.  I will be forever indebted to her for our friendship as heart moms.

Ella is six months older than my daughter, so I have carefully walked the past year and half alongside this family who has been gracious enough to share their experiences with me so I have a better idea of what lies ahead for my own family.  Of course, just like the doctors originally said, no two families have the same path.  And in the case of our two families this is also true.  Sweet Ella has had many more struggles than Haven has had.  She is still has a feeding tube and struggles with many feeding issues -- something we fortunately have not had to deal with given Haven's feeding tube was removed prior to us leaving the hospital.  Ella also has cataracts which will require her to undergo eye surgery on both eyes on top of the three heart surgeries she has already faced.  Her heart rate is still pretty high -- even though she successfully has completed the Fontan (the surgery we are awaiting in April) and she has countless more appointments than Haven does in between surgeries as they try to figure out the cause for some of her additional symptoms.  When something like the heart is working at 50% -- you can imagine the effect that has on the rest of the body.  So, it's a constant mystery, a constant struggle, and yet here she is, three year's old, has survived three surgeries, countless additional procedures, caths, and she even survived full heart block for 45 seconds during her last hospitalization.  This child is indeed a miracle.  And she has proven that fact over and over and over again to all of us.

After three years of constant medical worry and stress in this family, Ella, her older brother and her Mom and Dad were sent to Disney World by the Make A Wish Foundation this past week.  No one, and I mean no one, deserves it more than this family.  Even their healthy older child was recently diagnosed with cataracts -- something the family pediatrician missed amidst everything that was going on with Ella -- and this poor mother and father had to watch their healthy son go through two eye surgeries of his own just a few short months after Ella's most recent heart surgery.  I mean seriously?  Can you imagine?  Talk about shaking the confidence of this family...this was their healthy child....and they had to take him into surgery....twice....on top of everything else....unbelievable.

So here they are, soaking up the sun and enjoying their visit to "Mickey's House"as Ella calls it.  A family that has had quite literally no breaks from doctors appointments, visiting nurses, hospitalizations, getting glasses for practically everyone in the family, all while trying to maintain some kind of family normalcy.  Inside all of the challenges that come with having children with medical issues -- there is nothing more special than having an opportunity like this from the Make A Wish foundation to have actual real fun as a family, a chance to make fun family memories around rollercoaster rides and Sea World instead of hospital visits and doctors appointments, a chance to be together and share a bunch of laughs in the Florida sunshine rather than worrying about your sick kid, the kids worrying about a stressed Mommy and Daddy, and a family of four trying to maintain the stamina it takes to keep up with the constant and unrelenting schedule of appointments that this family coordinates on a weekly basis.

Thank god for organizations like the Make A Wish Foundation.  Because a family who has so gracefully managed the hand they've been dealt -- deserves one week -- just one week away from it all  -- to celebrate all that they are and all that they hope to be -- beyond the medical setbacks.  I have so much respect for this family and how they manage everything.  I look up to them and draw my own strength from watching them weather each and every storm.  

There is one thing that is simply undeniable.  Having a heart condition, while it can take away a lot of things -- it can't take away the sheer joy of a little girl on her first trip to Mickey's House :) 

Baby Men are from Mars & Baby Women are from Venus

Boo-hiss.  The production company made me take down my post about the reality show until it airs.  But then again, I just read that sentence back to myself and it cracks me up.  I find the whole thing fascinatingly hysterical so I really don't care.

Guess it's just back to the mundane world of a SAHM.  Kids were sick for most of November, with two separate viruses, then my husband got the flu, so no Thanksgiving for us this year.  Oh well.  You win some you lose some.  I, however, miraculously dodged being sick (probably because I got my flu shot -- hello common sense!) so I got to take care of everyone but at least I wasn't sick while I was doing it.  Why is it that husbands don't get the flu shot again?  That, asking for directions, and cleaning toilets come to mind too -- I just don't get what keeps them from doing these things.

Ahhh...gender differences.  Where to start....I wasn't sure I believed in the whole gender thing before kids.  Being a girl doesn't automatically mean you like pink, princesses, pretend make-up and handbags.  Being a boy doesn't mean you like blue, playing sports, setting things on fire or randomly destroying things.

Well I have kids now - one boy and one girl -- and I am completely blown away by how this estrogen and testosterone stuff plays out before you even get a chance to make an impression on a kid.

I am not a girly-girl.  So my daughter is not watching me blow-dry my hair or put make-up on, and I don't even own a handbag.  Seriously.  (Why do you think I'm not on facebook?  No one needs to see the hot mess that is behind this blog).  I wear more black than is probably appropriate for a regular person not to mention a mother with two small kids at a holiday party.  And I'm pretty sure I'm the only one at the park sporting a Primus t-shirt for christsake -- so let's just say -- she's not getting her lady-like cues from me.  But sure enough -- pink and purple are her favorite colors, she has a tiny patent leather handbag that says "Paris" on it (you know because real ladies buy their shit in Paris), and she has a variety of flavored chap sticks that she constantly applies to her adorable little face (it does look a little creepy when she's all lubed up with no where to go but what the hell's the point of being a kid if you can't eat/wear too much chap stick?)  She is extremely in-tune with other people's emotions or well-being ("You feelin' ok Bumpa? (Bumpa = grandpa)", "You gotta boo-boo?", "Does it hurt?", "Here, let me fix it for you", "You're going to be ok Mummy, don't cry"), she hates loud noises, likes things to be in their place all orderly and tucked away.  She even has a set of fake keys that she uses to "lock" her stuff up in a kitchen cabinet.  She takes good care of her babies and tells mommy, daddy and Ronan to "be quiet, the baby's sleepin'."  It's all very sweet, sensitive, orderly, and thoughtful.

My son, on the other hand, while a short 18 months younger than my daughter, literally does not give an S.H.I.T.  For realz.  I get that he's younger and can't talk quite yet and if you've seen the video of him -- you know he's still not walking -- but he is like a tornado of destruction compared to his girly-girl older sister.  Loves making huge messes and destroying stuff.  This kid is SO LOUD and absolutely loves to hear himself talk (geez, I wonder where he gets that from?)  He does not care if you are singing a sweet lullaby to him or trying to engage him in a little baby talk.  Oh, no.  It's his way or the highway and it is a SUPER LOUD HIGHWAY this kid is on.  He's not fussy or crying.  He's happy as a clam.  Just babbling away but at a volume level like he's an old man who's not wearing his hearing aids.  We're also pretty sure he's an ESL learner and that Portuguese is his first language.  I have one friend who speaks Portuguese -- maybe she can tell me what the hell he's going on and on about.  When he's not yelling talking, he's either banging two objects together, trying to swim in the dog's water dish or throwing things.  He throws EVERYTHING, all the time.  Learn to use a sippy cup?  Too dangerous.  Eating three small meals a day?  Our dog Bella is eating three small meals a day off the floor that were meant for Ronan -- that's how that's going.  He doesn't really pay attention, and he doesn't really care about your emotional well-being.  "Oh did that hurt when I hurled my sippy cup at your head?  Here, let me try to throw it harder -- this time at Daddy -- extra points if I knock off and dent his glasses."  He'll hit one of us (not understanding that it's not ok) and then literally throw his head back like Dr. Evil and laugh and laugh and laugh.  This makes him sound like an asshole.  He's not.  He's actually quite sweet when he wants to be.  But it has to be on his terms.  He'll kiss you if he wants to -- but if you try to kiss him he might just give you a love smack instead.  And he is so much fun.  Even he thinks he's a good time.  He cracks himself up all day long.  He literally scoots around the house, speaking Portuguese -- or whatever it is --- and just laughs at himself.  So, he's not entirely a brute.

But how weird is it that boys and girls are so different?  So naturally, nature vs. nurture, different?

Before I had kids -- I was always defending my sex:  Woman aren't THAT crazy, I'd say....We should be more respected for our emotions, how we feel and how we see the world from a more emotional standpoint.  And then I would go on-and-on about how completely flummoxed and annoyed I was by my male counterparts and how unemotional, unempathetic, and kind of basic-common-sense clueless they seemed to be.  Now I get it.  I have a daughter going through the terrible two's and a son who's becoming a toddler.  The little people that live in my house have definitely taught me a thing or two about this gender stuff.

My daughter has taught me that chicks are legitimately crazy.  Like naturally born crazy, over emotional, temporarily psychotic hot messes.  It's true.  You guys were right.  I can't believe I'm admitting this but we have NO IDEA what we were are talking about.  And in the heat of the moment?  For get it.  Our emotions definitely get in the way of any logic, and we can totally lose our minds temporarily and then somehow pull a 180 and become the sweetest nicest person ever and literally not remember what just happened two minutes before.  And my daughter doesn't even have her period yet.  Great.

My son has taught me that guys aren't ignoring you because they are actually trying to get under your skin on purpose and make you feel like you're not worth the five minutes of attention you are asking for.  Oh no.  They are sincerely 100% percent just born not giving a shit.  It's not that they are cruel, mean, and don't care about you -- they just don't know enough to even care.  And while they still get paid more than we do, and remain the superior gender somehow -- they are about two clicks away from living in a cave crow magnum style.  Instead of coming equipped with the emotional sensitivities of a woman -- they operate on a much more simpler less complicated level-- where loud noises, the sound of their own voice, and banging two things together is more in their wheelhouse than checking on everyone's boo-boo's and maintaining proper lip hydration.  Having less emotional sensitivity to things  allows them to be highly functioning in the logic arena.  Something us ladies just can't seem to maintain consecutively for more than 28 days at a time (damn you, hormones).

So, when Haven is laughing one second and then crying the next, and I can't even decipher through the alligator tears and desperation cry what is actually the problem, or what even started these dramatics in the first place -- when nothing will soothe her and it's clearly gone beyond any logic at all -- I realize I'm not only learning a lot about her -- but a lot about myself too.

And when Ronan doesn't really care that I'm singing him a lullaby, or giving him a little I-love-you snuggle and instead seems to have clearly diagnosable attention deficit disorder and would rather throw everything he can get his hands on as far back behind the refrigerator as he can get -- and then laughs in my face when I try to reprimand him....I realize that his way of showing me love, affection and happiness in general -- is just different.  That's just who he is.

And here I just thought us women were getting the bad wrap for being over emotional (which we are) and men lack empathy and emotional sensitivity (which they do).

Guess it really is true that baby men are from mars and baby women are from venus.

Reality Check (original)

I can officially check "Have Been on a Reality Show" off my bucket list.

I didn't really have a bucket list until I ended up on a reality television show a couple weeks ago -- but given recent events -- I'm thinking I'll go ahead and start one and see how much crazy shit I can pull off before I'm six feet under.  Yes, you can look for my mug gracing across your television screens sometime next year on A&E.  I wish I were kidding.  But this is actually true.

As a favor to a friend, I spent the entire day filming an episode for her reality show a couple weeks ago.  Spoiler alert:  As a snobby, judgemental, yuppy mother, who makes fun of waitresses and anyone who has used a hand-me-down breast pump -- I am far from playing myself on the show.  I waitressed for over ten years and every damn thing I own for my kids including my breast pump was a hand-me-down.  So,  I guess that kind of debunks the whole "reality" part of it -- and makes me super duper two-faced for thirty minutes -- but whatever.

The show is called Southie Rules.  It follows a longstanding local family and how they are faring against the recent gentrification of yuppy transplants who have brought their sushi bars, boutique stores,  and organized mother's clubs with them -- changing the face of the gritty working class neighborhood they've known and loved for a bazillion years.  They fancy up Southie while they are here for a couple years but then they take off for the burbs -- leaving the original Southie's trying to find a pint of beer in their own neighborhood that costs less than $7.  It's a highly contested show here in Southie because people are worried the filming of a reality show will give our community a Jersey Shore type reputation.  I get it.  But in my humble opinion, that's just ridiculous.  Especially if the people at the center of the show are making fun of themselves the way they are.

Reality TV is on a long list of indulgent and disgusting crap that Americans devour until they've eaten so much they puke.  I don't think a reality show is ever going to make or break the future of any one community.  Listen, every neighborhood has a couple of Snooki's in it -- let's just be honest.  And I'm thinking New Jersey has more important things to worry about post-Hurricane Sandy than the Jersey Shore show's impact on the community's reputation.  All I'm saying is -- who cares?  Stereotypes exist and people exaggerate and make fun of stereotypes on television.  All.  Day.  Long.

That's not to say that it's ok that American society spends an exorbanent amount of time and money exaserbating stereotypes and creating reality television shows -- far from it.  Clearly there are better things we could all be doing with our time.  But you know what, you only live once, and let's not shake our fists at the sky for no reason either.  I honestly believe that if you can't laugh at yourself then you probably need to get over yourself.  So, with that far-from-intelligent-rationale....I agreed to be on my friend's show.

I ended up being on an episode where they had members from the local Mom's Club go to my friend's house (the center character of the show) to see if she would be a good "fit" for our group.  The episode reeks with judgement about my friend's family not really being "acceptable" to our yuppy standards there are many awkward moments and awkward exchanges throughout the episode including the shit I had to say about waitresses and hand-me-downs.  So, yes -- it's scripted.  And frankly, not based in reality at all.  But more importantly?  How in the hell did I end up NOT being myself on a REALITY television show?  Don't I have enough on my plate, you ask?  Good point.

Ironically, I met this awesome local mom through the Southie Mom's Club, who has since become a fast friend, someone who is not offended in the least by the way I carry myself, talk smack, make fun of myself or the crazy people around me.  As you can imagine she is cut from a similar cloth -- speaks her mind, doesn't hold back, and is about as "real" (no pun intended) as a person can get.

Most Mom's Club Members are transplants and not originally from Southie.  Somehow, one of the other moms in our group convinced this local mom to join the Mom's Club and then subsequently our playgroup.  Even though she had no desire to meet a bunch of yuppy mother's from all over god's green earth who are only going to live in Southie for all of five minutes -- she joined.  Well, let me just say -- when I met this mom at the first playgroup of ours that she attended -- she pretty much said just that.  And I immediately adored her.  She was the real deal.  And I had so much respect for her -- for going outside of her comfort zone and agreeing to join our group.  You could practically hear the 75 family members back at her house giving her a hard time for joining the Mom's Club -- "what the hell do you need a mother's club for?  There's like fifty mothers in our family alone!"

Anyway, it was a ballsy move on her part and she's become a great friend and I love, love, love the fact that she's basically bridging the gap of the old southie and the new southie by being in our group.  And since it's highly unlinkely that we'll ever move out to the burbs and instead my husband and I will likely be carried out on a couple of gurnies from our home in southie in about a 100 years time -- I could use a legit southie mom like her in my arsenal.  She's awesome.

Well....after really getting to know her over the past year, her husband, their daughter and the day-to-day craziness that exists within the walls of her three family triple decker -- her life literally is like something from a reality television show.  And now, that's actually what's going to happen.  They have been filming for close to a year now and A&E liked the pilot so much they picked up the show for a first season.

The show is based on how the gentrification of Southie is perceived by families like hers who are watching their old neighborhood change right before their eyes.  The episode she asked me to be in pokes fun at the concept of the South Boston Mom's Club and the divergent stereotypes that exist in the new Southie -- specifically local mom vs. transplant mom.   White trash, raunchy, working class South Boston mom meets high-end, snobby, judgmental yuppie mom.

Southie has definitely changed over the past several years and some of these original triple deckers with the born and raised Southie families in them are now being bought by contractors, gutted and turned into sweet ass condos which young couples are snatching up and then subsequently starting their families in.  The thing is -- these young new families aren't staying.  Once they start their families and the kids get closer to school age -- they outgrow their condos and head out to the suburbs so their kids aren't (god forbid) raised in the city and have to go to Boston Public Schools.

It's not so much that the new Southie has entirely replaced the old Southie -- it's just that alongside the hundred year old family owned hardware store, flower shop, and Irish pub is now a brand new chi-chi hair salon, sushi restaurant, and high-end clothing boutique.  Today, you have crusty old Southies living next door to fancy new yuppies.  It makes for some interesting people watching on Broadway:  guys in scully caps, with sweatpants, smoking butts while carrying a 30-pack over their shoulder walking by hot moms in heeled boots pushing a double stroller with their Coach diaper bag and a small dog on a leash.  I find it utterly fascinating and absolutely love the eye candy around here.

But let's be honest, the South Boston Mom's Club is very much the product of the gentrification of Southie and probably why they chose to do an episode about it.  I mean, why the hell would some born and raised Southie locals need a mother's club when they are living with their entire extended family in a triple decker not to mention their grandmothers, grandfathers, cousins, aunts, and uncles all live within a few block radius of one another.  The Mom's club is for people like me.  People who have recently moved to Southie, who were not born and raised here, who aren't related to anyone and therefore need to meet other transplants who have moved here to start a life.  Now, the fact that I have an Irish name has definitely helped with the transition to Southie -- but this is Whitey Bulger territory for Christ Sake -- they know right off the bat when you're not originally from here.

What I learned by being a part of an episode is that it's not really reality.  For the first part of the episode, I had to play a super judgmental, yuppy mother who was actually screening my friend to see if she was an "appropriate fit" for the Mom's Club.  Which the Southie Moms Club absolutely, 100% does not do.  Anyone and everyone is welcome in the club.  So, not only did I have to pretend I'd never met her before -- I had to be super rude to her and her family, asking her if she'd ever used hand-me-down clothes for her children or a second-hand breast pump (both of which I HAVE DONE MYSELF).  So, that was a little awkward.  But once I realized just how much the purpose of the show is to exaggerate stereotypes in the newly gentrified southie  -- the actual filming of it was really fun.  And funny.  I mean, I have no idea how this is going to play out on TV -- so here's hoping it's not the most offensive television show of 2013 that it ends up being banned in certain countries (I'm totally kidding -- it's A&E for Christ sake) -- but nothing takes the cake of how much fun this family is making fun of THEMSELVES -- it's a little hard to get bent out of shape about thinking this episode as being a bad portrayal of the Mom's Club in Southie when -- the butt of the joke is at the expense of this family -- and from what I saw the other day during filming -- they are having a freaking good time making fun of themselves and eachother.

So....we'll see what happens.  Who would of thought.  Move to southie, start a family, join the mom's club, meet some yuppies, meet some locals, end up on an episode of reality TV.

Just another item checked off the ol' bucket list.

The Mom's Club

There is a South Boston Mom's Club.  And I am a card carrying member.  I'm kidding, there aren't cards.  Calm down.  The Southie Mom's Club is awesome.  It's a loose network of moms, both working and stay-at-home, who have an online community forum where we can communicate with one another about all the "mom" issues that face us on a daily basis.  A smattering of mommy topics, if you will.  You know things like, baby constipation, story time hours at the library, where to get the best deal on a stackable washer and dryer, the great debate over Ferberizing vs. Attachment Parenting, a recommendation and referral source for everything from a great plumber to a great OBGYN.  Some would say they go hand in hand.....The point is, being new to the community and a new mom to boot -- it was an absolute lifesaver to be able to meet people in my new neighborhood who were also just starting families of their own, a place where I could connect with other mothers who could offer advice or just be a sounding board during what we all know is a super isolating first year.

I didn't join right away after having my daughter because it was such a crazy time for me -- but once I got settled and into the swing of things with her -- I joined.  What I liked about it was how flexible it was to be a part of -- especially because it was online --  you could opt into things when you felt like it and you could opt out without any pressure to feel like you had to be apart of everything.  Bunch of moms meeting at the park?  Ok, maybe I can shower up for that and try to make some small talk and meet a few people.  Mom's Night Out with an open invitation to meet moms at a local bar for a few drinks?  Ummm, yes, please -- I thought you'd never ask.  It's kind of like online dating.  And who are we kidding, that's about as close to dating as we're ever going to get again in our lives -- so we might as well put on a pair of our best maternity jeans and go out on a few blind dates with each other at this point.  Am I right, ladies?

So, just before my daughter turned one that what's I did.  I tried to pull myself together as best I could -- freshened up with a little deodorant, might have even combed my hair before throwing it back into a ponytail, kick started the ol' stroller and headed off to the park to meet some chicks.  Always awkward at first -- not going to lie.  But after everything I've been through at this point?  What the hell do I have to lose.  And my kids are getting a little sick of my stand-up routine at home anyway (mostly because they don't understand what I'm saying not because my jokes are crap -- at least that's what I tell myself :) so it's probably a good idea if I sharpen up my communication skills with actual adults every once in a while.  Not to mention, dad's suck at socializing and meeting new people.  So, especially after kids, when your social life shrinks to the size of postage stamp, it's really up to the moms to meet other moms, who have husbands, who might like your husband and so on.  You're like a sales rep for your family.  You're not just looking for a one-night-stand with another new mom for yourself -- you're looking for a bromance for your husband too.

One of the super cool things the Mom's Club does is set up playgroups for moms who have kids of a similar in age.  That way, if the one-on-one blind date isn't your style -- now you can try a blind date in a group setting.  Anyone getting social anxiety just reading this?  Obviously, this is not for everyone.  But it's rare that I don't try something at least once.

Here's how it works: some super-together-head-mom-chick is the playgroup coordinator for all of South Boston, who clearly was born with extraordinary supermom powers because she has somehow managed to oversee a database of our names and kid's ages (how the hell this person has time to figure all of this out -- I have no idea -- but major kudos to her and her multi-tasking supermom abilities).  She sends out an email to a small group of maybe five or six moms -- introducing a few of us with the same age kids to each other and then we agree to a schedule of rotating hosting duties at each other's homes once a week.  The point is the kids get to play, we get to chat and only one house gets destroyed at a time.  You can get super isolated as a stay-at-home mom in this day and age....times have changed!  Unfortunately this stuff doesn't happen organically the way it used to -- now, you have to organize it yourself.  We just don't live in a world anymore (especially in the city) where you can open your front door and the neighborhood kids play with each other in the street while the moms smoke cigarettes and drink martini's like on Mad Men.  God, I wish I was a mother back then.....

So I signed myself up to be in a playgroup a got myself a-socializin'.  It's kind of an awesome social experiment.  It's completely random how these little playgroups are set up -- I mean, the only thing we really know we have in common is the fact that we have a ten month old baby -- or whatever the age is when you start up -- and that's not saying much given how different every ten month old is let alone the parenting style or personality of every mother of a ten month old.  It's a pretty ballsy concept.  But the extreme way in which your life changes after kids?  Desperate times call for desperate measures.

Now, don't get me wrong -- like any group of human beings -- you're not going to get along with everyone.  And because Southie is fast becoming one of those places where many families start out before heading out to the burbs -- you get a good cross section of families and everyone has different backgrounds, beliefs, and goals.  But that just keeps the social experiment that is the Mom's Club interesting, no?  And yes, the situation with my daughter initially made it difficult for me to strike up casual conversation at the park about seemingly meaningless topics when I had what felt like more pressing issues on my mind.  I mean, I didn't want to burst some of these ladies bubbles, but finding the most stimulating mobile on the market wasn't exactly at the top of my to do list.  But my road was different.  And honestly, talking to some of these crazy birds up at the park helped me understand just that.  I wouldn't wish my road on anyone.  Even an annoying mom at the park.  By forcing myself back into normal society -- I came to terms with what had just transpired during my pregnancy and over the first year of my daughter's life.  Slowly but surely (and it took a couple of years, believe me) I started to feel just a wee bit more comfortable with my new normal and the fact that what happened in our lives with our first born (thankfully for most people) is abnormal.  And now when I get caught in an awkward exchange with a mom who doesn't "get it" -- I don't really care anymore.  I'm honestly happy for her.  I'm glad that her biggest worry involves matching the pottery barn kids color scheme with her drapes and finding the most thought provoking mobile for her newborn.  Seriously, that's the way it should be.

But man-o-man did I end up hitting the jackpot with my playgroup.  I mean there just have to be playgroups out there where the moms don't mesh well and that has to be some awkward stuff.  You have all these broads in your house with their crazy kids knocking all your shit over, stuffing goldfish in every crevice of your couch, all-the-while you're internally putting massive amounts of pressure on yourself that the other moms most definitely live in a way nicer house and they are just trying to be polite, smiling, nodding, drinking your coffee, but you are so fucking positive that they're thinking to themselves -- jesus, these people live like this?  It's like being in seventh grade again -- and we all know how much fun that was.  Not.

But thankfully, everyone in my playgroup is awesome.  And after a few awkward ice-breaker-type get togethers at the beginning, people got more comfortable with one another and surprisingly -- even though we were randomly assigned to one another -- we all get along and we've been meeting once a week at each other's houses for over a year.  We bitch, chat, laugh, advise, and listen -- we make meals for each other when someone has a baby or needs a little backup -- all the things you really need from a community of women who have just started the mind-bending journey of becoming mothers.  So, it's cool.

The Mom's Club is one of those things that I never even knew existed before kids and quite honestly I think it's an amazing resource for mom's like me in the city.  Or moms anywhere for that matter.  It's also the closest thing to being a part of something "domestic" as I'm probably ever going to get.  I mean, I try to deliver meals to other new moms, just like people have done for me -- but I still have a ways to go before I'm one of the head-chick-supermom-playgroup-coordinator-types.  For example, I delivered an entire meal of homemade enchiladas to a mom in my playgroup who just had a baby today.  Wicked nice of me, right?  And impressive that I have two young kids and found the time to actually cooked something from scratch -- I know, it's amazing.  Well...don't get too excited because I delivered it to the wrong address.  Yup.  Left a pile of enchiladas on someone ELSE's front step for two hours (of course it was an unseasonably warm November day and I had included sour cream :) until the new mom called me to say she hadn't seen the food I said I had delivered and then had to send her husband out to search for the food that I left somewhere on her block.  Clearly I have to polish-up my mom's club skills.  Baby steps.

He found them by the way.  Lucky for them, the random people whose house I left them at never found them either.

To Three or Not To Three…That is The Question

Oh yes, having another child is officially on the table.  And it may be hard to imagine but I am not writing this from an inpatient mental health facility.  These words are coming straight out of my own terrified mouth.

My husband is one of five.   I am one of two.  I knew a long time ago that more than two kids was a probability because of how important it was to my husband.  But I also knew I would have the last say given that my body would be used as the vehicle by which to reach this goal and I would always have the last word on this issue, thank you very much.

We did what a lot of people tend to do more and more these days.  We dated for almost a decade before we decided to get married.  We were in our early to mid thirties when we got married and then had our first child a couple years later. 

The first sign that we weren’t 100% in control of this little plan of ours was when we found out during our first pregnancy that our baby would be born with a life threatening heart defect.  With this news we had to face the fact that our first born might not make it and that there was the potential that we would have to rise from the rubble and consider getting pregnant all over again after such a devastating loss.  Not knowing for sure how things were going to turn out and thinking into the future of the possibility of having to try and get pregnant again after the loss of a child – literally made my head spin.  I remember feeling sick to my stomach and wondering if I would even ever be able to consider getting pregnant again should our lives take a terrible turn for the worse like that.

There was one conversation I will never ever forget because I literally couldn’t believe it was actually happening to me.  The social workers at the Advanced Fetal Care Center advised us to at least think through the decisions we would have to make should we lose our child.  That we needed to be at least a little bit prepared for the worst possible outcome should it happen. 

I sat across the kitchen table from my husband at eight months pregnant and we forced ourselves through one of THE most awful conversations we have ever had to have with one another.  As difficult as it was, we knew we had to do it and we hoped on hope that we would never have to face the loss and then burial of our baby.  I remember looking into my husband’s face and thinking I never would have dreamed a conversation like this when I was exchanging vows with the person I loved on my wedding day. 

I know now, after this conversation and the months and years that have followed, that without a shadow of a doubt (no matter how much I complain about marriage) we could and would make it through anything.   We would always make things work between us – no matter how hard it got.  In a way, this experience has taken the place of the vows we exchanged on our wedding day and where there was once a commitment of love and hope is now a bond so strong I wouldn’t even attempt to find the words to accurately describe it or give it the justice it deserves.  And as hard as the past few years have been at times, I would never trade the bond I have with my husband for anything.

After our daughter was born and we had to get her and ourselves through two open heart surgeries before she was even eight months old, our family planning discussion – for obvious reasons – fell completely off the table.  We were terrified just to make it through her first year of life and we sure as hell couldn’t consider getting pregnant again with everything we had going on.  Our lives were so stressful and so chaotic those first eight months that we simply just didn’t talk about when or if we’d have another child.  We were also told that in families like ours there is an increased chance (although a very small increase) of having another heart baby.  The thought of going through something like this TWICE – well let’s just say we couldn’t even fathom something like that.

We did however talk to the doctors and social workers from the hospital about how other families like ours handle the family planning question after the birth of a heart baby.  They told us that some couples decided not to have subsequent children, that there were many couples who felt the experience was too frightening to risk having to go through again or that their lives were already so challenging with their heart baby that they really couldn’t take on another pregnancy or another child.  Others, they said, waited a long time before deciding to have a second – waiting for five, six, seven years, until it felt to them that their heart heart baby was far enough away from the risky open hearts before trying for a second.   But there were also people who got pregnant right away and just buckled down and didn’t let the heart baby experience impact their original plan to have other children.

Getting a few stories from the hospital about other families like ours was about as far as we got in our discussion about having another child when…..we found out we were pregnant.  Shock of a lifetime considering neither of us even remembers conceiving our son (no word of a lie).  Looking back, I’m thinking what happened was this:

We finally had exhaled after our daughters second open heart, we started to relax a little bit and felt we had made it to the other side of the toughest part of that first year – we were still standing and when we originally got the diagnosis – we really didn’t know if we’d be standing towards the end of that first year.  We literally had been living day-by-day, sometimes hour-by-hour, and somehow, by the grace of god, literally – we had made it through the two open hearts and she was still with us.  It was an incredible feeling.  We desperately wanted to feel “normal” again, so we went out, we had a few drinks, we let our hair down, and well….we made another baby. 

I remember getting the positive pregnancy test when my daughter was only nine months old and I’m not going to lie – I think I cried for 45 minutes straight.  I was so completely blown away that we were going to have another baby without having “planned” for it.  Especially after what had just transpired during our first pregnancy not to mention the open hearts.  What if something goes wrong again?  How are we going to manage two children AND another open heart surgery.  As scared as I was – I finally understood the true meaning of a “blessing.”   The surprise of my second pregnancy was a blessing because I didn’t even have the opportunity to talk myself out of ever getting pregnant again.  I didn’t even get a chance to worry and fret and make myself sick with trying to figure out when I’d be ready to try again, or stress about my daughter or the health of this second baby.  It just happened.  And now I have an amazing, healthy, son – who literally just jumped on board when I wasn’t looking so I couldn’t change my mind or stop him from catching a ride down to planet earth.  And I am so, so, so grateful for that because I know in my heart I would have over thought all of it and I would have had a really hard time letting my guard down enough to allow myself to move on after what happened to my daughter.

But it was not easy.  Having my son come so soon after the birth of my daughter and her two surgeries…. I would be lying if I didn’t admit that the first 3-6 months of his life were extremely challenging.  I mean if you think about it – we had never actually taken a newborn home with us before.  We had never had a healthy child before where they just hand the baby to you and say here, sign this, and you can be on your way, Good luck!  And it wasn’t just him.  We had another kid too, and she wasn’t even two yet.  It was pretty terrifying.  And no matter how much baby amnesia you get after giving birth – I can still to this day recall just how hard it was to have a newborn and a 1 ½ year old.  It was hard.  Damn hard.   Our marriage was in the shitter, I was so overwhelmed, exhausted, physically compromised after two pregnancies in two years (there is a reason, ladies, why they tell you to wait at least a year before getting pregnant again :)….it was super super hard. 

When you are in it?  You feel like you are drowning.  There were days when I was so exhausted and so over matched – I would give my husband that look (a look you can only give someone after having been with them a decade and then having two kids back-to-back) and say, “What the hell was the point of having a family if we are both going to end up remarried!”  I was so tired and so fed up with our marriage being buried under this tremendous amount of responsibility, ridiculous amount of hard work and constant emotional stress day-in-and-day-out.  It really started to feel like it was never going to end.  

But just like everything in life, once you come up for air, and after that six month marker with some much needed sleep under my belt – you think – wow, we made it.  But it’s not until you are on the other side of it that you realize just how far you’ve come and the enormity of everything you have accomplished.  We’re alive.  Everybody survived.  We made it through.  Some days sure as hell weren’t pretty, and having my son effected our entire extended family because of all the help we needed, but we got through it, in one piece, and now when I look at my two kids playing together I think – wow, this is really something else.  THIS makes more sense to me than anything else ever has in my entire lifetime.

Well jesus, you put it that way and it sounds like we’ve got a pretty good gig going here at the ranch, no?  Why add to the chaos with another child?  Why do it all over again, compound the stress we already have with another pregnancy, another birth, another newborn, another toddler.  Another kid in college for Christ sake!  While there are many, many, many reasons we have both mulled over to NOT have another child – there are a few in the category of wanting another child that we just can’t seem to shake. 

It’s hard knowing that with my son at almost a year and half and my daughter moving closer and close to three everyday – that if we didn’t try to get pregnant with another child we could easily start digging our way out of this phase in our lives.  We could get through Haven’s last surgery and we could parent one-on-one with each child – for the rest of their lives.  Hell, we could even start to try and finally find more time for our marriage and each other.  What?

There’s a third child out there that belongs in our family and we know it.  We’ve tried to talk our way out of trying for a third but all things on the NO list just don’t outweigh all the things we know we’d long for (for the rest of our lives) on the YES list.  But we also know this is the tougher, harder, more challenging, potentially less responsible road to take.  We want to do right by our marriage, our daughter, our son, and the financial stresses any growing family faces.  We don’t want to half ass having a family, putting so much stress on all the supports holding up our family foundation that we fuck the whole point of it up and do a crappy job of it. 

It’s not worth it in the end if we aren’t happy, that the kids aren’t happy, that we are too overburdened and can’t give each of our children the individualized attention they need let alone the attention our marriage would need along the way.  We don’t want a bunch of kids and a marriage that we can’t enjoy, or that we aren’t able to manage in such a way that we aren’t instilling, love, confidence, and peace of mind for every member of our family.  If we are going to try for this – we need to be committed to not just doing it.  But doing it well.

We also had to admit to each other that our daughter’s heart condition and unknown life expectancy is playing a major role in this discussion.  We hate admitting that fact, but it’s true.  We have every belief in the world that she’s going to live and thrive and have a wonderful life.  She may not live into her 60s, 70s, 80s – but hell – maybe she will.  And in the way, way, way back of our heads we have the tiniest, darkest, little fear tucked away that for all we know, at any point we could lose her – just because of her anatomy. 

Having another child will never take that fear away.  We will always live with that fear and have been living with that fear since October 23, 2009 when we got our diagnosis.  We will carry it with us to our graves.  And while we don’t spend a lot of time letting this fear run our lives and while we try to do everything we can to make sure our daughter lives a happy, healthy life -- free from as little disruption or set backs as is humanly possible – we understand that we, even as her parents, will never have the last word on our daughter’s mortality.   We have had to understand to our core that we have no control over this.   It’s not in our control and it never will be.

When we look at our son we want nothing to ever happen to him.   And on top of that, we don’t want him to ever have to lose Haven.  We don’t want him to live with any kind of a burden because of her heart condition.  We never want him to feel different from her.  Even after Brian and I are long gone and six feet under, we never want him to ever feel alone.  We wish we could promise him, too that he and Haven will always have each other and that no matter what happens to mum and dad – you will always have each other should either of you need someone.   And god willing their story will be just that and they will have each other for a long, long, time.

As the parents, we feel cheated by the unknowns of Haven’s heart condition but there is nothing more concerning to me than thinking about Ronan being cheated by Haven’s heart condition.  And weather they are the closest of siblings or they can’t stand each other – it breaks my heart that I can’t protect either one of them from this complicated heart stuff.  It’s the only thing in the world I want to do as a parent – I just want to protect them from any possible chance of Haven’s heart condition hurting them in anyway or making them lose the thing they love the most.  But I will never be able to entirely protect them.  I have to accept that this is the road for all of us, hold on tight to each of their hands, and just keep walking.

So, all of this is to say – that while so much of the past few years of getting our little family off the ground has been filled with a turn of events, surprises, and ups and downs we could never have imagined -- we are hoping we have enough solid ground to stand on as a family after all we’ve been through – to answer this question for ourselves about a third and final pregnancy, a third and final child in our family, and to move forward with trying.

Knowing in our hearts that we vetted the idea as best we could, we thought it through over and over again, and this time we walked into it with our eyes wide open willing to face all the challenges we know come with it – so that in fifty years, we will be looking back upon our lives and with full confidence and full hearts we can say we have exactly the family we dreamed of and can honestly tell ourselves that we did it well.

Oh, Sh!t

So, might as well keep this white trash theme a rollin' because we've got some issues going on down here by the river.

I have the mouth of a truck driver.  Anyone who knows me knows this.  I don't know quite when it started or why it started but once it started it really became a big part of my personality.

I have lovely parents, they RARELY swear.  They are both educators, so it's a little embarrassing on my part that they raised a daughter with such a filthy mouth.  Oh, and I swear in front of them.  All the time.  And have for years.  I also have sworn in front of professors, doctors, definitely on job interviews and in front of my in-laws.  I think I even swore once at my husband's uncle who's a priest.  But he deserved it, believe me.

I know it's a vulgar quality because meeting me for the first time is already like taking a drink from a firehouse let alone the f-bombs that are laced throughout whatever the hell it is I'm talking about.  But I'm an emotional person through and through and I guess it's just not enough for me to try and get my point across without the added swear word here and there for emphasis.  I mean, I'm ALL ABOUT emphasis -- to the point where it surprises me that I don't type in ALL CAPS.  You know...one of THOSE types....

But I'm sure the people around me would say I'm getting my point across just fine and would you mind letting up on the F'bombs and Jesus Christ's so early in the morning, please and thank you.  Sorry, no can do.  I think it's partially because it takes a lot to get me really angry. So, I'm never angry.  Therefore, in order to release a little negative energy here and there -- I swear.  I mean, I'm not robbing banks or killing people -- I'm just using bad language.  A LOT.  Seems to be the better/healthier option, no?  Humor and swearing.  When I look back on it -- it's kept me off Nancy Grace and it's gotten me through a lot.  But I have kids now.  So, hmmm....how's this going to work?

Swearing was fine when I was a waitress in my twenties.  Especially at an Irish bar where my Irish friends used swear words to endearingly describe their grandmother back home.  "She's the fucking salt of the earth, I tell ya."  Swearing is part of the vernacular there -- so, it didn't help my habit one bit that I picked up and used phrases like, "For fuck sake!", "I'm just taking the piss out of you," "Can you spare me a fag?", and "Fucking gobshites went out on the piss last night and jesus, we got absolutely fucking knackered." God, they have some good ones.  I outta bring a couple of those back into the rotation.

So, kids...right.  I have kids.  One of them is already a sponge and the other one is well on his way.  I've tried to do some self monitoring -- you know, like say "shoot" instead of "shit" or "F-er!" instead of "Fuckers."  But clearly being a stay-at-home mom -- I don't exactly have another adult around to keep me honest.  I do the best I can.  But recently?  I think I would give myself a grade of "F" (funny, right?) in this parenting category.

My daughter is potty training.  She's just over 2 1/2 years old and she's doing really well with it.  Except for a couple accidents here and there which are mostly caused by her medication which makes her do one enormous pee mid-morning that she has trouble controlling.  Fair enough.  She even lets me know right away that she's had an accident.  The other day I heard her say, "Awe shit" to herself in the living room and when I came around the corner she was standing in a puddle with her pants wet and in a totally normal voice, "Shit mum, I had an accident."  Yup.  You did.  Two accidents really, you peed your pants and I accidentally taught you how to swear.  Whoops.

Then she said fuck at the dinner table.  In front of both me and my husband.  She was talking to herself about god knows what -- but still -- she kind of said it under her breath.  So my husband says, "Wait, what did you just say?"  And she looked at both of us, swear-to-god, she rolled her eyes (is that even possible already?!?!?!) and said in a completely exasperated tone because of our questioning, "I just said fuck a little bit."

Oh, phew!  You were just saying fuck A LITTLE BIT.  I gottcha.  My bad.  We thought you were saying it a lot!  Silly us.  Later, my husband said, "I'm surprised she didn't say -- I just said it a little bit -- not A LOT like mommy does." Touche, my dear husband, touche.

I'm also not doing very well with the "less is more" parenting approach and have found myself (I know this won't surprise anyone) talking WAY too much when I try to discipline my daughter.  I don't yell at her necessarily, (although I'd be lying if I said I haven't yelled at her before) but I talk way, way, way too much.

For example, she did something, I sat her down for a time out and started to explain what the time out was for, and I was so annoyed and upset with her that I found myself going on and on and on -- and not even really about whatever she had done wrong -- just talking and talking......."and I didn't know I would meet your father in a bar and that we'd end up married, with a condo underwater in a godforsaken place that I spent more time holding political signs on street corners than I care to remember, and then the next thing I know we've got two kids in two years, and...." and thankfully somehow I miraculously came to my senses and realized how much I was rambling on and on in front of my two year old while she's looking at me with a damn-this-bitch-is-crazy look on her face wondering when this completely insane monologue that she can't even understand anyway is going to finally end.  But I was in too deep now.   I had to find some way to stop the madness and wrap up....so I abruptly shifted gears and ended with, "and that is why you do not throw food on the floor.  Ever."  

Yikes.  So clearly when my close friends have stopped by the house to see me and the kids and multiple people have kindly suggested, "Ya, Molly -- I would just say less to her in general.  You know?  Just keep it short, and then move on.  She is only two after all."  Hello?!?!  God, you guys are so right!  You mean she's not my 35 year old best friend who I hang out with all day?  Oh shit, you are totally right, she is two.  Damn it.  What the hell have I been doing?  I really have lost my marbles with this stay-at-home mom gig.  Jesus.

I guess it didn't surprise me when another time recently I was getting on HER nerves and she just dead pan said to me very seriously, "Mum?  Stop with the fucking attitude."  Wow.  A whole sentence this time.  Used in completely the correct context.  Awesome job, Molly.  Must have said that TO HER during one of your blackout monologues about your sordid life.  Wow, major mommy point deduction.  Huge stay-at-home mom technical foul.  Might have even deserved a red card and had me thrown out of the game entirely.  Seriously?  I said that to her at some stage?  Wow, my nerves really are shot.  You know what?  Well played, Haven.  You got me with that one.  Taste of my own medicine.  Damn, girl's got attitude.  I secretly kinda like it.  But man, I gotta clean up my act if I want to stay working this gig!

Talked with the husband about the whole thing and while it may seem like we're making excuses for ourselves so we can keep swearing all we want -- we're definitely going to curb the swearing as much as is humanly possible for two adults who have literally NO FILTER and then hope that our brilliant children will understand when it's appropriate and when it's not appropriate to use "bad" words.

Our kids are going to hear bad words.  I mean we are raising them in Southie for godsake.  But I guess we're going to go with the thinking that we'd rather have them know they exist, know that people say them when they are frustrated but that they should not be used to hurt another person or used in order to be disrespectful to another person.  Like, my daughter who said fuck -- but said it to herself and in her defense "just a little bit."  I guess, I'm kinda of ok with that.  And hopefully by having heard swear words being used -- she won't find them all that fascinating to say in the first place -- we'll kind of take the taboo out of it by not making it a big deal in our house or in our lives.  My aunt's friend, who is a self-described trash talker, wrote an article about this very issue which you can read here.

In the meantime, I am committed to taking things down a notch and leaving the swearing for special circumstances :)  Maybe try, "Shoot!" "Shucks!" "Darnit!" and see if those don't get some traction rather than the all out swearing of my two year old :)  Maybe I'll even take the ol' "Jesum crow" off the shelf and dust that sucker off -- remember saying that?  What the hell does that mean anyway?

If it doesn't work - you can all say, "I told you so" when my kids are two angry driving massholes from Southie.

30 Pack

So just as you thought this was going to be one serious downer of a heart baby post after another....I figured I would lighten the mood a little bit.

Sometimes your life is so chaotic and crazy you just don't have time to stop and smell the flowers.

When you do finally stop and smell the flowers....sometimes you find a 30 Pack of Bud Light holding open your baby gate.

My kids love slamming the baby gate closed over and over and over again.  So I usually put one of those Busy Zoo activity cubes in front of the gate because it's heavy enough to keep it open and it distracts them from realizing the gate they love to slam every five minutes is right behind it.

Now, don't be fooled by my son Scooty McGee who still cannot crawl or walk.  What he lacks in lower body strength and coordination he makes up for with his abs of steel and sheer determination to move anything that is in his way or could potentially slow down the scoot -- which in recent days has definitely picked up some serious speed.

Well, Mr. Muscles can move the Busy Zoo activity cube now-- which is the heaviest toy I could find in the house to block the gate with.  So, desperate times call for desperate measures, and while I don't even remember doing it -- at some point, I must have put a full 30 pack of Bud Light in front of the gate, to block it and keep it open.  (In fairness, I do need the Busy Zoo to put in front of our subwoofer where my son has secretly been shoving tennis balls, magnets, and puzzle pieces into the speaker hole).

I also noticed in taking this picture, that our beloved original Red Sox seats from Fenway park are now a dumping ground for annoyingly colored kid crap and a monkey that looks like it's waiting for the #9 bus to South Station.

Never in my wildest white trash dreams did I think the above scene would be a snapshot of my living space.

And once we drink that 30 pack down (which who are we kidding it'll probably still be there at Christmas our lives are so lame -- unless, of course, I decide to drink the whole damn thing in a moment of weakness and sheer desperation) our honkey-tonk asses are going to have to come up with another solution to block the gate -- you know....like a sweet ass Tiki Torch, RV or hibachi grill.

The Olsen Twins

No, not Mary Kate and Ashley.

Their names are Talbot and TJ, and their father Greg Olsen is a football player for the Panthers.  Greg and his wife Kara found out at their 18 week ultrasound that TJ, the little boy twin, was diagnosed with half a heart.

It's rare that you see something you've experienced personally in High Def with moving music playing in the background.  I guess that's why we go to the movies -- to see something or watch someone else experience things we can relate to.  Well, I can definitely relate to this video and this story.

It's also important to know that money, success, a huge house, and a nice grill don't take away the pain, fear, and worry that come with receiving a diagnosis like this.  It's one of those things that strips away all that stuff and makes us all the same.  We love our spouses and we love our families.  We love our children, and we want them to be healthy and safe.  We don't want anything bad to happen to them.

In this video, the father, Greg says something that completely reminded me of my husband when we were going through this.  He says until his son's diagnosis, throughout his whole life -- if things weren't ok he could always make them better, that his son's diagnosis was the first time he had felt utterly helpless.  It was the first time his wife of eight years had ever seen him cry.  This was exactly the case for my husband on the day we got our diagnosis.

After the diagnosis, I crazily searched the internet for videos like this one.  I tried to picture myself in these people's shoes and desperately wondered what the end of our story would be.  Now, I watch this video and desperately wonder what the end of their story will be.

It's crazy to think that a journey that we are still (thankfully) in -- is just beginning for someone else.  It's hard to get an update today from Echo of Hope and know that the battle is still very precarious for so many heart kids out there.

Talbot and TJ were born on October 9th and TJ will have his first of three open heart's this week.  I can only hope and pray that they weather all the storms that we have and have a similar outcome to ours.

Waiting Room

"Life is like a box of chocolates....you never know which one you're going to get."

If you told me 15 years ago that I was going to be married with two kids, I would have laughed right in your face.

If you told me that not only was I knowingly going to decide to start a family and try to get pregnant but that five months into my first pregnancy my baby would be diagnosed with a very rare and very life threatening heart condition I most definitely would not have laughed but might have said something like, "Seriously? Me? Are you sure?  That doesn't sound like a good idea...umm....at all."

If you then told me that I would have ANOTHER baby a short 18 months after my first kid had two open heart surgeries and all the shenanigans that goes along with that, I would have said, "You've got to be shitting me."

But here I am.  All of those things have happened.  I have survived them and I'm still putting one foot in front of the other the best way I know how.  I never in a million years would have guessed that any of this could be true....and yet, here I am.

Probably THE most important lessons I've learned about being a heart mom is from other heart moms who have been willing to share their experiences with me and from the countless moms and dads I've chatted up in all kinds of doctor's office waiting rooms over the past two and half years.  What?  Chatting up people in a waiting room?  That doesn't sound like you at all.... 

It has probably been the single most humbling experience of my life to meet other moms who wake-up everyday with the same challenges and struggles we all face when raising young kids (paying the mortgage, keeping the marriage together, just generally trying not to lose your mind...) but have so much more on their plate than you would ever think to imagine.

None of these mothers chose this life knowingly.  And I include myself in this.  They never in their wildest dreams ever thought they would have a sick child or a child with physical or psychological limitations.  You wouldn't wish that kind of thing on your worst enemy let alone yourself.  And yet, they get up, they put on their clothes, they try to pull it together mentally to make it out the door and face all the fears, all the worry, all the appointments, the tests, the co-pays, the needle pricks, the therapies, the research, the surgeries, the consults, the consent forms, the support groups, the medications, the monitors, the child care, and all the while....keeping an eye out for those pesky warning signs that your child's health -- mental or otherwise -- has "changed" and you need to let one of your specialists know.  And the goddamn worry that ensues immediately after...is this a big deal?  A little deal?  Are they going to be ok?  It's not easy....but it is the road.

So we all sit in these waiting rooms together.  We know we're all dealing with shit just by virtue of being wherever we are in the first place.  But what you SEE in these waiting rooms is astonishing.  What you talk about in these waiting rooms is as much heartbreaking as it is eye opening.  Everybody has their "cross to bear" and at the same time everyone is positive the person next to them must have it so much worse than they do...and oftentimes we all spend a lot of time saying, "God, I don't know how you do it," to each other when we all know we individually have our own stories and our own challenges and we're just trying to hang in there with it all.  It's kind of a flipped-upside-down/morbid version of the "grass is always greener" concept.  You're just so damn sure you can't possibly have as hard of a life as the person you are sitting next to.    

Being a heart mom has brought me into the lives of an unbelievably wide array of children and families  I knew absolutely nothing about before my daughter was born.  Audiology waiting rooms with moms signing to their kids.  GI waiting rooms with kids playing while hooked up to their feeding tubes. Neurology waiting rooms with these suped-up enormous wheel chairs like I've never seen before holding up and supporting every limb of a child's body.  Physical and Speech therapy waiting rooms where kids are scooting, hopping, limping and backwards army crawling across the floor while other kids are completely silent, not speaking or looking at anyone, speaking but no one can understand what they are saying, yelling and throwing their bodies around because it's the only way they know how to express themselves, or trying to communicate with their parent but repeating the same couple of words over and over and over again.

Just writing that last paragraph was hard and I'm sure reading it was hard.  It's hard to think of people going through these things and not shed tears or feel overwhelmingly "sad" or "sorry" for them and what they are going through.  And I'm sincerely not trying to be depressing here --  or make people feel worse than they already do for not "counting their own blessings" or feeling like -- "how can I complain when other people have it so much worse than I do!"  This is where being a heart mom has changed me forever.  It's not sad.  It's reality.  It's the everyday.

Alright -- so maybe it's not fair to outright say it's not sad.  It's fucking sad.  I'm sad that my daughter has half a heart only because I wish she had a whole one.   But the mothers and fathers that I have met in these waiting rooms are not "sad."  Sad would be far from the list of words I would use to describe my fellow waiting room buddies.  In all honesty, most of us are just grateful to be there at all.  Many of us either had to face the decision of whether or not to terminate our pregnancies after a diagnosis, or feared that our child would not make it in the early days and months after they were born.  Or we had a healthy child at the start in that they were originally smiling, cooing, laughing, giggling, and then all of a sudden one day they just emotionally disappeared from us.  Either way, we've almost lost or feel like we've lost our child in one way or another and sitting in these waiting rooms means we're still riding it out, we're still here, we're making a tough situation work, and we're going to get through it because we owe it to our kids.  We owe it to ourselves.

So, no matter what the severity of the diagnosis is -- and as different our day-to-day's often are  -- we sit in these waiting rooms -- sometimes we talk to each other -- sometimes we don't -- but when we do talk -- there isn't a single mother or father who hasn't said to me in one way or another  -- I had no idea this would be my life.  I had no idea I would face these kinds of challenges.  But now that I am facing them,  I don't know any other way that my life would be.

We have our children with us and we're getting by.  And when it comes down to it -- it's really not any more complicated than that.  Those of us who have lost our children -- and there are many -- would give anything to sit in a waiting room with their child for all of eternity.  We know this and therefore we make it work.  All of it.  Doesn't mean it's pretty, or even all that enjoyable at times, and it sure as hell wasn't what we expected going into this -- but it's what we know.  And once you do enter into this world, what originally felt like the most isolating disaster of a lifetime turns into a place where you are never alone because there is always someone sitting right next to you.