no one's perfect.

Well another summer has come and gone and here we are back in school.  This summer was fabulous/  Caroline came to visit and I proved to myself that I could conquer Philadelphia with four kids in tow.  It finally feels like we can actually do things, now that everyone is (mostly) potty trained and I no longer have to pack half the house with us to go places.  We went to North Carolina on vacation with my parents and other family, had barbecues and baseball games and fireworks and everything awesome about summer.  For me though, there was always a shadow behind me.  It's been nearly 4 months since Molly died, and not a day goes by that I don't wish it wasn't so.  

There are reminders everywhere - there's the obvious: driving by the cemetery or going to Kristen's house, and the subtle, like seeing a butterfly or a rainbow.  But it's the unexpected reminders that get me the most - during the Perseid meteor shower in August, I was struggling to explain what meteors are like to my 4 year old and I said that meteors are tiny and wouldn't hurt him, it would be like glitter falling from the sky and he said, "Molly's throwing glitter from Heaven!" 

All the while, I remind myself that what I feel is a sliver of the enormous pain that Kristen and her family are going through.  While that gives me perspective, it's not always enough to keep me from being angry or sad, or or generally unpleasant to be around.  I wish I could say that this experience has made me more patient with my kids, or made me kinder to others, or made me want to crusade to end Pulmonary Hypertension and HHT.  It hasn't, at least, not all of the time.  I'm just as patient as I've always been, which is to say about as patient as a regular old mom.  I'm as kind as I used to be, but probably more judgmental.  Somedays I want to contact my Senators and Congressman, but there are plenty where I want to pretend like I still had never heard of those diseases.  Those days, those times, I feel like I'm letting Molly down.  Mols, who never gave up on anything, would expect me to be better.  

But there are days where I do better - when I let Will walk on the wall at Crossroads, just to hear him say "yay!" and see the look of pride on his face when he jumps down by himself or when I actually ran around in a rainstorm with the kids or when I don't internally freak out at the guy taking his sweet time to back out of a parking space.  Those days, I remember that life is really too short, and there's no reason not to take the "super spy double secret back way home" (which is twice around the neighborhood and down a cul-de-sac and back).  

Today, a butterfly raced me down the road to the bus stop.  I couldn't help but say "Hi Molly." And then it occurred to me, did I see the butterfly because the butterfly is carrying Molly's spirit, or did I see it because I am carrying Molly's spirit in me?  And that was a very comforting thought.  Cause Molly, though persevering, wasn't perfect and it made me realize that she wouldn't want me to be perfect either.  

Words that were never meant to be said

On May 17th, Molly died.


That is not a sentence that was ever meant to be written.  Even as I type it, my stomach drops, my eyes fill with tears, and I am overwhelmed with the enormity of those five words.


On May 17th, Molly died.


For 20 months, I have known that this was a possibility, if not a probability.  But the mind is a powerful liar and I have spent 20 months believing that Molly would beat it.  I mean, if any kid was ever going to magically cure herself of an incurable disease, it was going to be Molly.  She was a tough cookie from the day I met her.  I can remember babysitting the Dunne kids when Kristen was recovering from a surgery - Molly and Kate would have been about 2, almost 3 - Molly liked to change her clothes about 14 times a day and it made her dad (the chief laundry doer) crazy.  After about the third outfit change, I tried to dissuade Mols from going back into her room for yet another change, and she let me know in no uncertain terms that this was HER house and that I was NOT her mom.

Another time, the summer before she got sick, I was watching the kids and I told her no about one thing or another and she simply stared defiantly at me.  I thought "I have to stare this kid down or I'm never going to have an ounce of credibility with her again." And as we eyeballed one another, a different thought occurred to me, I thought "This kid is going to punch me in the nose."  When Molly was in the hospital and the diagnosis of PH had been made, I can remember sitting in the waiting room of the cardiac unit, holding Kristen's hands saying that if it was any other kid, I'd be more worried.  But Molly?  She would stand up in her bed in the CICU and say "Hell no!  I'm going to beat this."


Kristen and I live close together and we used to say that one of us had to move before our daughters entered their teens, as we could totally imagine them all sneaking out of their houses together.   I imagined the trouble they would get into, driving around town, honking at boys, singing along with crappy pop songs, doing the things that teenaged girls do.


On May 17th, Molly died.


Though I knew what the chances were, I spent very little time thinking about what things were going to be like if Molly died.  During the last week, when Kristen mentioned that she was thinking about taking Molly to AI so she could say goodbye to her therapists, and even though I knew what she meant, my brain could only think of saying goodbye like she was graduating or moving or going to a new school.  Not like she was dying.  It seemed completely unreal.  It still does seem completely unreal.  Kristen recently posted a photo of Molly's grave covered in the flowers from the funeral, and my gut reaction was one of wanting to claw at the earth and uncover her, because it would be too dark and cold and scary for a 7 year old and some remote part of my brain is holding on to the wish that this is all a dream and there was a terrible mistake and that Molly's in there, pissed off and wanting to play with her toys.

People keep telling me what a great friend I am, and every time I hear it, I cringe.  Nothing I did changed the fact that Molly died, that Kristen and her family have to live with an unimaginable amount of pain.  I should have done more with the Miracles page, had more fundraisers, gone to see Molly more.  None of it would have changed anything, I know that.  But the thoughts are still there - what if, what if, what if?


On May 17th, Molly died.


And now we have to live with that.



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No one ever got skinny making snarky remarks over drinks at the bar

Yup.  So I weigh 181 pounds.  I have weighed 181 pounds since about three months after Will was born. I have gone up and down within five pounds of that range, but for all intents and purposes, I have weighed 181 pounds for 2 years.

I have complained about it, read about it, thought about it, talked about it, accepted it, and been sad about it.  The one thing I haven't really, truly, honestly tried is DOING something about it.

Oh sure, I go to the gym occasionally.  I don't have endless snacks in the house.  I drink diet pepsi and switched from sugar to splenda in my coffee.  But let's be honest, I haven't really pushed myself.  If I want half of Will's donut, I eat it.  If I want Wendy's for lunch, I get it.  I'm not really very good at self denial, nor am I very good at "pushing through pain" (unless I wind up with a baby at the end, but that's a different blog).  If I hurt, I don't want to go to the gym.  So I don't.

I am not disappointed with myself.  Let me be clear.  I hate the negativity that women have around food and weight.  My friends beat themselves up endlessly about the food choices they make and the weight they don't lose, or gain back.  I hear successful, beautiful, smart and talented women put themselves down because they don't weigh the "perfect" weight.  There was a great article about "fat is the new ugly" that talks about how kids learn that being fat means you're stupid, mean and lazy.  They learn this from us, the mothers that talk about the donut we had yesterday as if we had cheated on our husbands and not our diet.

So, I'm not beating myself up.  I have made the choices I have made for many reasons, and I have many excuses for not being more diligent about living a healthy lifestyle.  I am deciding that I'm going to start making this a priority.  When Maggie is spinning like a top in the house, yelling "I'm a molecule!" (thank you Gerald from Sid the Science Kid), I tell her "Control your body!"  Today, I start controlling mine. And you, Avid Blog Reader, are going to help me.

I saw a good piece of advice on FB about exercise and I thought I'd share.  Perhaps it's not that I hate exercise, perhaps it's that I haven't found what I like to do yet.  So I'm embarking on a quest to find an enjoyable kind of exercise.  I am committing to exercising every day, some way, some how.  I will get out of my comfort zone and try something new at least once a week, even if I feel like an idiot doing it.  90% of my problem is the whole "feeling like an idiot" thing - it kept me from trying a spin class for two years. When I finally did muster up the courage to try spin, the instructor was super nice and helpful, I got my bike set up and after a few minutes of feeling stupid, I realized that not one other person in the class gave a rat's ass about my neurosis.  You'd think that a woman who has breast fed in the National Archives would be less inhibited, but there it is.

So, feel free to suggest any exercise you think would be good.  I'm going to blog about it and tell my tales.  My goal is to lose 10 pounds this month.  Wish me luck!  Hopefully, I'll be amusing while I'm doing it.

On being "That Mom"

There is a disease that is epidemic among men and women in their 20s and 30s.  It's symptoms vary wildly, largely affecting the areas of the brain that control speech and logic.  It's called "first pregnancy syndrome" and it's only cure is the birth of a child.  There is no treatment during the pregnancy, other than the application of well meaning advice that is generally scoffed at and not taken.

When we found out we were having our first baby, Jeff and I, like so many other couples decided that we were going to do it "right".  We were out celebrating our news, and after we went straight to Barnes and Noble to buy armloads of baby books to ensure that we were well informed parents.  While perusing the books, I saw that one of the absolute no-nos of pregnancy was eating raw fish or lunchmeat.  This fact collided with the fact that I had eaten a ham sandwich for lunch and sushi at our celebratory dinner.  I had only been pregnant for 8 hours and already I had messed up and guaranteed that the baby would have three eyes and maybe be a serial killer.

Recovering from this setback, I marched onwards, determined that I would make it up to "Scout".  Jeff made me smoothies for breakfast, replete with wheat germ and flax seed.  I drank water by the gallon - so much that when I went to the doctor to have the 'confirmation test', it showed up negative.  I had literally diluted my pee to the point where modern tests could not detect my pregnancy.  I did yoga, well, I did yoga for like a week.  I read "What to Expect When You're Expecting" and joined Babycenter so I could know what size fruit my baby was this week.  We made a birth plan, bought a birth ball, picked music to labor by, went to the lamaze classes.  In short, we knew everything.

And then I was overdue, and I was induced, and we couldn't use the birth ball and I had an epidural and we forgot to listen to the music during labor and I wanted to punch Jeff when he tried to get me to use the lamaze techniques.  I had been cured of FPS.

However, now I find that I'm afflicted with a new disease, "That Mom Syndrome".  I'm the one who is combing the girls' hair with my fingers at the bus stop and the one that forgets to bring the "star snack" to Jack's preschool.  My kids fight like Protestants and Catholics. I let them watch TV for the express purpose of letting me play "Hidden Chronicles" on Facebook.  I let them ride their bikes in the street. I am not pinning adorable party favors on my Pinterest board to make for Will's birthday party.  In fact, I didn't have a birthday party for Will, period.

More often than not, I find myself giving - mostly unsolicited - advice to parents that can be summed up by this statement - "Relax and find your way of doing things, without worrying about what the 'experts' say, or what your friends say, or even what your parents say". I try to take my own advice.  My kids are happy, they're doing well in school, they all have friends, they can ride their two wheelers and tie their own shoes.  Will is potty trained and Jack can write his name.  These are all good things.  And in the grand scheme of things, this is all the easy stuff.  As parents, it's so easy to get caught up in the minutia of parenting and forget about the big picture - we all joke and say "he won't get married in diapers" but yet there is a small part of every potty training mother I know that thinks if their kid isn't potty trained by age 3 that their kid won't get married cause she (the mother) has failed and the kid will ultimately be the guy on the street with a sign that says "Will Work for Pull Ups".

So for all my bravado, I still worry about being "that mom".  However, I don't see that changing anytime soon, cause let's face it, I think my kids are pretty awesome.  Maybe I'll pin some really fantastic dessert that we can all make together.... nope. Probably not.

Before and After

We are all undeniably shaped by the things that happen to us; from the moment we're born things happen to us that shape the choices we make, the way we view the world, and the way the world views us.  Most of the time, we're not even aware of the minute changes that happen.  It's not until we look back over the landscape of our lives and that we see the mountains we thought were rolling hills.

There are a few moments, however, that stand out and we describe them as such:  ground breaking, earth shaking, life changing.  I've been lucky in my life that I have had very few of those kinds of moments, almost all of them happy.  I've mostly bobbed through the charmed ocean of life, with happily married parents, few heartbreaks, and few disappointed hopes.  September 2010 changed that.

This is not a blog to talk about Molly or her medical condition - if you are interested in following Molly's journey, her mom Kristen has written eloquently on the topic in her caringbridge blog.  But her illness, critical condition and the adjustment to the "New Normal" has left a mark on me, and I will forever think of life as "Before" and "After".

In order to decide to become a parent, you have to take a gigantic dose of "that won't happen to us" pills.  This is what allows you to love someone so completely, without reservation.  If people stopped to think of everything that could go wrong with pregnancy, birth, babies, toddlers, tweens, teens, college students.... the human race would end.  To function, you HAVE to be able to convince the rational part of your brain that yes, bad things do happen, but they happen to other people and your child won't have a problem.  Before, I lived happily in that bubble, "knowing" that there were kids with problems out there, but satisfied with the idea that it wasn't going to be my kids, or my friend's kids.

Seeing Molly on life support was a terrible thing.  The ups and downs of those dark days deeply affected me in ways that I'm only now starting to understand.  It was as if I had been walking down the street, a beautiful street, lined with pretty houses with neat yards and when I reached out to touch one, I discovered that the whole thing was a paper thin backdrop that I could punch a hole in.  And when I punched that hole and tore the paper, behind the beautiful houses were sick and dying children, their parents and siblings, and families and friends.  I couldn't get the idea out of my head that there were thousands of kids like Molly out there; sick, clinging to life, with their devastated families sitting by their sides.  I became obsessed with Caring Bridge posts, I found myself searching Facebook for pages asking for prayers for this kid or that.  I became completely unable to leave the house for fear that I would miss a post or a phone call from Kristen about Molly.  I couldn't fall asleep unless my cell phone was plugged in next to me and I found the loudest possible ringtone so I would be sure to hear it, even in the deepest sleep.  Not that there was much sleep to be had.

I went through alternating phases of completely overindulging my kids and getting mad at them for not understanding why I was sad.  I stopped reading some Facebook posts, cause I would get so angry about people complaining about their kids.  I wanted to shout at people "Hug your kid!  Be happy he's well enough to misbehave!"  I went to the mall and standing among the crowd of strangers,  I realized if I started to cry, no one would know why, and it made me start to have a panic attack.  I got into a fight with a friend because he asked, via Facebook, to ask people to pray that the financing went through on his truck.  I told him that people like him were clogging up the prayer lines and did he seriously think God had anything to do with financing a truck and if He did, then the whole notion of God was insane.  I would swing wildly between praying to God and thinking that I couldn't believe in a God who would allow people to go through so much pain.

I was so angry.  Angry at God, angry at the doctors, angry at everyone who didn't stop their whole lives to help Molly.  I knew it was unreasonable, but I couldn't stop myself.  And I would get angry at myself, for having emotions that I wasn't sure were really mine to have.  Molly's not my kid, and I'm not a member of the family, so did I even have the right to be so sad and mad and scared?

Slowly, the anger ebbed.  The grief has been largely replaced with gratitude that Molly has recovered so much.  But I am in the After.  I no longer think of AI Dupont as a place you take your kid for a broken bone, it's where Molly went on life support.  I still jump at texts and phone calls from Kristen, and when the caller ID said AI Dupont recently, it took me a minute of conversation with the person calling before I got my heart out of my throat.  Kristen and I had a running joke in the Before - if your kid was sick and you wanted to take them to the doctor, you called Kristen for advice.  If you didn't, you called me for advice.  That's not true anymore.  I'm much more likely to err on the side of caution, and my stack of EOBs from the pediatrician proves it.

The biggest difference in the After is in how I view my friendships and how I deal with people.  I have realized that people have different priorities from me, and that's okay - Everyone gives what they can, when they can.   Just because Kristen and Molly have this BIG problem, doesn't make the problems that other people face less important to that person.  I had to stop comparing everything to Molly, but I also had to distance myself from friends who were having crisis because I knew I wasn't equipped to handle it.  I also learned that when the shit goes down, you will be surprised by who steps up and who steps out.

I think I'm more serious now.  When I see a speeding car, I tend to wonder if that person is rushing to the hospital before I think "what a jackass".  It's been hard to write this blog, as you might have guessed by my lack of posts.  At first, I felt like happiness was a sort of betrayal to Kristen, my bestest buddy who was anything but happy.  Then I wanted to talk about how I was feeling about this, but didn't know how for a very long time.

The After isn't entirely a bad place.  I think I'm more patient with my kids and husband.  I appreciate our health and our happiness more now.  I think it has made me kinder to strangers and more aware of the people around me.  My girls are much more aware of special needs kids and adults and understand that there are kids who are less fortunate than they are.  Personally, I would give up all this awareness and sensitivity for another cold drink by the pool with Kris and all 7 of our kids acting like shit monkeys in the pool, but this is not the life we lead.  I'm grateful to Father Foley and his continuing miracle of Molly, and I'm grateful to whatever trick of fate led us to Delaware and me to the Pike Creek MOMS club.