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.