Heart Month can be a sweet month and a tough month for Heart Families.
Most of us look at CHD awareness week as just a time to do just that: build awareness, inform the public that CHD's are the #1 birth defect, so people are better informed and so we can secure the funding we need to keep our kids alive because a lot of people don't know about us or our stories.
On the one hand, it's most definitely a time to celebrate, to be thankful, and to be grateful for the medical interventions that are now possible for our children. And that makes us all feel a certain gratitude and thankfulness that's impossible to explain. The feeling of joy is indescribable when you are among the lucky ones -- lucky enough to still have your heart child. We are the definition of the word "hope."
And on the other hand, Heart Month becomes a time (whether you like it or not) to reflect and to remember just how hard this road has been. Sometimes we get angry. Sometimes we cry about the hardships our children, our marriages, and our families have had to face because of this diagnosis. We mourn the loss of normalcy in our lives. We mourn the many little CHD angles that didn't make it. And most of all, we connect with one another and turn to each other for the much needed support that is required in order to continue on this journey of raising a child with half a heart -- hopefully into adulthood.
In an effort to continue to raise awareness and to honor the struggle, the sacrifice and the love that makes up our reality as heart families, here are some videos from the heart:
The Heart of the Matter -- how they are helping save our children
Clara's Story -- what it's like to find out and then forge ahead
It's heart month and I'm a heart mom, so the whole Valentine's thing, the colors pink and red, the little heart shape cut outs and general cheesiness of the holiday that honors the very organ my little girl only has half of -- has a taken on new meaning in my life.
I never knew this, but heart defects are the #1 birth defect. How the hell did I miss that when I found out I was pregnant and started preparing to have a baby? I, like everybody else I know, fretted and fussed as I got closer and closer to my 18 week ultrasound about my test results for down's syndrome, other chromosomal disorders they always talk to you about, whether the baby had all it's arms and legs, fingers and toes. I never once thought about the heart.
I remember when at my 18 week ultrasound, at some general run of the mill hospital, they told me they couldn't get one of the ultrasound pictures they wanted. I didn't think anything of it. They didn't seem worried, so I wasn't worried. They even asked me to walk around a little bit, stand on one leg and jump up and down, I guess trying to get the baby in the right position so they could get the picture they wanted.
I'd never been pregnant before, so I just figured the baby was in a bad position, it needed to move, and once it moved or finally settled into the right position they'd have the picture they needed and we'd move on. Move on to more pressing issues, like do we want to know the sex of the baby-type issues and how fat am I actually going to get? So, after jumping on one leg, peeing, walking around, doing all kinds of things to try and get that baby to move -- they decided to have me come back in a couple weeks for a level II ultrasound, which would most definitely get the picture they were looking for and likely the baby would be in the right position and everything would be fine.
That next appointment seemed like a bit if a nuisance more than anything so I told my husband not to worry about it and that I would go on my own and that way he wouldn't have to take off work again for another silly OB appointment. So, off I went to the level II ultrasound during a lunch break at work. Was not worried in the slightest. The ultrasound tech did her thing, said she was going to have someone else review the pics and then she'd be right back. Alone in the dark of that room, I definitely started to get a little nervous. Could something actually be wrong? I'm super healthy, I don't smoke, I don't do drugs, I've been eating like a total health nut, I'm working out, I'm like the healthiest I've ever been -- what could possibly be wrong?
When she came back she told me that a fetal cardiologist from Beth Israel who floats to outlying hospitals to review level II ultrasounds would be in shortly to talk to me. That's when the panic set in. He walked in, he sat down, and he told me that after reviewing my ultrasound, he was almost 100% sure that the reason they hadn't been able to get a "good" picture of the right side of the heart was because there wasn't anything to take a picture of. The right side of my baby's heart was not developing. She had half a heart.
I heard most of that but it was like a scene in a movie where everything slows down, his lips were moving but there was no volume. I didn't even really understand what he meant. Was it a death sentence? Was the baby alive? Did it die? Was it going to die? Was I going to miscarry? Would I deliver a stillborn? I couldn't even begin to fathom anything other than this ending horribly, horribly wrong. At that moment. I was convinced this pregnancy was over. And if the pregnancy wasn't over, I was almost certain I would be the mother of a very, very sick and very, very disabled child -- at best.
I told him something was wrong with the baby's heart. That I couldn't even begin to try and explain it, I was crying so hard I told him I needed him to call the doctor who had just seen me in the ultrasound room and try to get him to explain it because I couldn't even remember what he had just told me minutes before. I told him I didn't even think I could drive the two miles home to our house until I could remotely pull myself together. He said to stay put, that he would call the doctor, call my parents, have my parents pick him up from work and drive him to where I was. I knew that his heart was broken for me, knowing I was sitting five months pregnant in a parking lot unable to move, I knew he was scared for the baby and that under all that scary shit he was terrified for himself and what this would mean for our family we hadn't even started yet.
And not that any one thing would have lessened the shock from that moment when I found out my baby had half a heart -- I can't help but think that if I was I was even remotely AWARE of how common heart conditions were -- maybe I would have been the teeniest tiniest bit more prepared? Ok, probably not. But still. Hindsight is always 20/20 but when I found out that heart defects where the NUMBER ONE birth defect? I just could not fucking believe that statistic. How the hell is that possible when I had never even heard about if before? If it's that freakin common, why the hell isn't anyone talking about it? How did I miss this? And it doesn't change the fact that my daughter's diagnosis is super rare and a fair amount of heart defects can either correct themselves on their own (how cool is that by the way?) or involve a minor procure once the baby is born. But you can't deny the fact that you still see more social media around down's syndrome, cancer, and cleft lip. And all of those diagnosis are super important too, but how did the heart defects not get to sit at the cool kids table and be included in the list? Something's not right here...
So, in honor of this February's Heart Month -- Boston Children's Hospital made a video about it (I'm the one awkwardly bopping up and down too much and closing my eyes when I talk) and you can watch it here:
So, pass this video around to anyone you know who is pregnant or thinking about getting pregnant. The more you know, the better -- right?
And when you do "pass" your 18 week ultrasound with flying colors like I did with my second pregnancy -- or when you are kicking back reading What to Expect When You're Expecting and starting to sweat the small stuff -- just take a minute to REALLY grasp what has to happen to make a healthy child. And just reflect on how truly awesome and amazing it is that it goes right as often as it does. Think of all the healthy pregnancies and healthy babies you know in your life and then multiply that by a gazillion. How unbelievable is that?
I never truly understood the whole "every life is a miracle" thing until I had a sick child. I am not a religious person but I have no problem bowing down to the unbelievable science, wonder, and general how-in-the-hell-does-procreation-freakin-happen-perfectly-over-and-over-and-over-again let alone the sheer amount of just plain old luck that goes into giving birth to a 100% healthy baby. THAT is probably the most remarkable thing ever.
A healthy baby is quite literally a miracle of science. And a sick baby, in our case, is as lucky as anybody else -- even with half a heart because of these ridiculously talented people. Play the Heart Center video. It takes two minutes, seriously, just do it. Imagine saving people's lives who weren't born with the anatomy to live by figuring out a way to allow their bodies to work with what they've got? My kid has half a heart and you couldn't survive with a diagnosis like that until these people decided: Yes you can. Try that for a 9-5 job. It will make you question why you thought you had a bad day at work yesterday.
Happy Heart Month, everyone. Hug the people you love and be sure to tell them how much you love them. Because we're all miracles in one way or another and it took a hell of a lot of luck and crazy science to get us all here and on the planet in the first place.
No point in boohooing Valentine's Day. Take full advantage of it.
Cheers to Moromonland! Successfully traveled with the two kids out to Southern Utah and managed to miss the blizzard back East. Thank you, Jesus Brigham Young. How lucky am I that my parents bought a little place in the Southern Utah dessert - just one hour and forty-five minutes from Vegas where I can defect each winter in an effort to not end up one of the profiled criminals on Nancy Grace due to completely losing my mind as a stay-at-home-mom with two small kids who are relegated to the indoors when two feet of snow gets dumped on your already isolated lifestyle. Thank you Mom and Dad!
Kinda weird that it's a conservative Mormon/Republican community and you guys are flaming liberal Democrats, but since it's 60 degrees and sunny almost everyday here during the winter? I can get over that it's a dry town and everyone is blonde.
My dear husband traveled out here with us, got to spend a little under a week here but had to go back to the salt mines just in time to also spend every waking hour that he's not working -- shoveling. I definitely have the better deal since I will stay out here with the kids until March and it doesn't really get below 55 and there's hardly a cloud in the sky most days. Pretty sweet stuff.
So, here's the scoop on Mormonland and why a place you seemingly may have next to nothing in common with might just be your middle-aged-vacationland-fantasy :
1. Everyone goes to church on Sunday. And I mean LITERALLY EVERYONE. So, you basically have the whole town to yourself. Yes a lot of things are closed -- but the things that are open? It's like having your own personal Starbucks, Costco, and Albertsons. All. To. Yourself. No lines. No traffic. It's like stay-at-home-mom's heaven out here on a Sunday.
2. Mormons have like 13 kids a piece by the time they are 24. After bringing the kids out here the last couple of years -- I don't know how children even survive in Boston. We have a Dunkin Donuts on every corner. This place has changing tables on every corner. You can literally go ANYWHERE and whether it's a restaurant, store, playground, you name it -- everywhere is loaded to the gills with all your diaper changing, bottle making, and snack distributing needs. And EVERYTHING seems like they installed it brand new yesterday. Boston? Not so much. You basically just lie your kid down on the pavement to change a diaper. There are no public bathrooms -- and even if there were -- you sure as hell wouldn't want to go in one alone without a firearm or a hazmat suit let alone bring your precious baby in there and then take her pants off. Forget about it. Since half the population of this town is traveling around with like 6 kids under 6 -- they got this shit down to a science.
3. Makes ordering alcohol fun again. Because Mormon's don't drink, swear, or do much of anything naughty really -- you kinda feel like a badass out here just for ordering a beer let alone using a shopping cart (thank you very much) when you make your run to the state liquor store (WITH THE KIDS mind you :) -- it's like being in one of those western movies where you walk into the Cantina and all of the local cowboys turn around to get a look at the stranger in the doorway and in one glance they can just tell you're a total badass who means business. Going to the liquor store in Southie is about as exciting as taking the trash out it's so much a part of everyone's daily routine. Here? I feel like I'm doing something totally illegal every time I acquire alcohol. And I like that.
4. Conservative as hell. Here's where you might want to just keep your conversations to a minimum and go along to get along. I mean, I got mad respect for the kid friendly environment and super props to the changing table situation -- so I don't want to piss anyone off with my swearing or my stance on gay marriage. It is beyond strange to walk into a bookstore and see Bill O'Reilly and Rush Limbaugh books fill the entire Best Seller section. Even stranger when my parents little gated community holds its home owners potluck and the sundried tomato and feta past salad dish they brought with them was frowned upon and viewed as a little "racy" given the slew of jello molds and marshmallow salads that covered the buffet table. Let alone that my mother was making small talk about how she's interested in joining the local democratic city committee. I think she would be their third member. But hey, when your main goal is to escape cold weather and have a place to go to with clear blue skies and warm temps with tons to do with the kids -- anyone can stumble through a few awkward "wouldn't the country have been better off with Mitt Romney as president" conversations.
5. Public facilities that make the Ritz in Boston look like a dump. The Community Center here might as well be a freakin high class water park and it costs like 50 cents to join. Who knew that these remote, conservative, religious towns in the middle of nowhere had the best public facilities known to man. The community center here is a SAHM's wet dream. I'll let a picture of the pool speak for itself. And what's even more insane is how CHEAP it is....anything remotely of this caliber in Boston would literally cost hundreds of dollars to join. I'm usually here for six weeks each year. What does that cost me? $30 bucks. TOTAL. Oh no wait, I have to pay $2 a kid if I want to drop them off in the daycare center for TWO WHOLE HOURS while I spin, take a yoga class, or who am I kidding -- take a 45 minute shower if I want to and not bother to workout at all. I'm sorry, but this kind of celebrity lifestyle simply does not exist on the mean streets of Boston. I mean, unless you have Kennedy amounts of money at your disposal. Amazing. We are at the community center, no lie, six days a week.....but who's counting.
So there you have it. Mormonland for the non-Mormon. It's a beautiful thing. So, the next time you're planning a trip to Disneyland or renting a beach house in Florida -- just Google remote, religious, cheap, kid friendly, publicly funded kick ass community center destinations and see what comes up. It might surprise you.
PS: I am definitely warming up to the idea of this multiple wives thing because let me tell you, it sounds awful tempting to have a few more adult women in the house to help me carry the load around here. In that sense? I have NO problem adding people to my marriage. I would be lying if I didn't admit to the fact that I could sure use the help. The crazy hair and the potato sack clothing? Not really my thing. But I traded in my modeling career and my sense of dignity a long time ago -- so if I can get any of the ladies out here to move back to Boston with me....I might just be bringing a little bit of Mormonland home with me this year.
This was a post I wrote back on Nov. 23rd 2012 that the production company made me take down prior to the show airing. Not sure if I'm even allowed to post it now -- but since the show is airing tonight at 10PM on A&E -- I figured I would repost it and see what happens....big brother is watching...so if I end up in court for breaching my "contract" you'll know why I'm unable to blog from my prison cell.
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.
Haven will have her next open heart surgery sometime during the last two weeks in April 2013.
It's official. We've made it to the Fontan.
I read that back to myself and it brings tears to my eyes. She made it. We made it. We've just got one more major open heart to go. We are among the lucky in that we have a chance at having a child with half a heart live a pretty normal life once we get through this last major hurdle.
Three years ago with this baby in my belly -- the doctors set out hurdle after hurdle, milestone after milestone -- explaining to us that if we we were lucky enough to find ourselves on the other side of each of these hurdles -- the baby's chances of survival would steadily increase:
Get the baby/pregnancy to full term
Have an uneventful, complication-free delivery
Survive the first major surgery -- the BT Shunt -- and the subsequent caths that go with it
Avoid failure to thrive at all cost, get her to grow, grow, grow so she's a good size leading into the next surgery
Survive the Glenn -- the second open heart procedure and the caths that go with it
Have a successful enough Glenn to ENJOY watching your baby grown into a toddler so that they are as physically active, robust, and healthy as possible prior to the Fontan
Survive the Fontan -- the third and potentially LAST major open heart surgery -- and your kid -- while never free from needing some additional medical procedures and medications for the rest of the their life -- will live a happy, healthy, pretty much normal life.
If you get to this bullet - it means you've survived the Fontan....go enjoy your child.
When we were in and out of the hospital during the first eight months of her life, I remember seeing the Fontan families. I couldn't even picture my little peanut, my little newborn blob...a toddler. An actual kid, who could talk, tell me how she was feeling, sitting up in her hospital bed with tubes and wires attached to her and having some kind of child-like comprehension of what was happening to her.
I remember thinking to myself. God, that looks hard. Those are real kids. Kids who can talk and have feelings and can express those feelings and thoughts. How the hell am I going to do that? And then I would look down at my little blob of a newborn and think -- god, I hope we're lucky enough to have to go through however hard that's going to be. Please God, get her to the Fontan.
So we're here. And as scared as I am to take this talking, walking, feeling, thoughtful, expressive, feisty, PERSON into her next open heart surgery -- I feel so lucky that we've made it this far -- that we get this chance at normalcy. And I feel equally as grateful at how uneventful the past almost TWO YEARS has been for our family. Because that's also just about as unheard of as anything else. She has done so well. Remarkably well. We are forever grateful. Forever grateful.
She knows something is coming up. Just the sheer amount of time I have to spend on the phone with her different doctors and specialists, the health insurance company, whomever -- she hears the word surgery, she knows I'm talking about her, she gets it means she has to go back to hospital. Sometimes he even cries about it -- saying she doesn't want to go to the hospital -- she doesn't want to have surgery. So, it's hard.
You can't get too into it with a toddler for obvious reasons -- I mean, think about Christmas. This was the first year she was really trying to wrap her head around the concept of Santa. She had lots of questions, she obsessed about his whereabouts and who he was, where he lived and what he was doing at any given moment. Toddlers tend to obsess. So, I don't want to get into it too much with her until we're closer to the surgery date. No need to build up unnecessary anxiety around something she can't fully understand.
How could she remotely try to understand what's coming, or even worse, why it's coming, especially since she doesn't necessarily feel sick -- although I am seeing signs that she needs the surgery -- blueish lips and fingertips, limited energy and stamina when playing with other kids, trying to run around or exert herself usually ends in a "mommy my body hurts, I need to take a rest." All of which they told me was normal for her at this stage. Normal signs that it's time for the Fontan. But when it comes down to it. She's really not going to understand why she has to go to the hospital, why she has to have her chest cut open, why she's in a world of pain, and why mommy and daddy are letting it happen.
But we'll hold off on all that nerve wracking stuff -- we'll wait until we're closer to the surgery and sometime, maybe a week before we take her in, we'll start "playing" it through -- you know, play surgery with one of her teddy bears kind of thing -- just to get her even remotely familiar with the hospital life that she simply just can't remember is such a huge part of her little past.
So, in the meantime, to get away from our unrelenting PT schedule, and just our regular day-to-day crazy shuffle in general -- we're so fortunate and so lucky to be able to leave the frigid New England winter for the cloudless, sunny, blue and unbelievably beautiful landscape that is Southern Utah.
We are so fortunate that my family has a little place in the Utah dessert where we can get away from it all, let the kids run around in the fresh air, swim, play and just have some normalcy and get a nice long break before we hunker down for our next major hospital stay. My husband will only be with us for the first part of the trip and the last part of the trip -- going home to Boston to work in between -- but it's a busy time of year for him anyway and it'll be good for him to get a ton of work done before the surgery as well. We'll miss him but it's healthier for all of us -- especially Haven -- to get out of the cold and into the sunshine.
All of us will need to soak in as much sunshine as is humanly possible heading into April and we are beyond fortunate to have the opportunity to do just that as we head out to the desert.
Like I've said a million times before -- we are so lucky -- in countless ways -- we are just so so so lucky :)
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 :)
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.
