Confessions of an (emotional) hoarder...

I just made a big, stressful, totally inconvenient, turn your life upside down move from a two bedroom in-law style apartment to a 3 bedroom house.

I don't enjoy change. In the last 3 months- there has been a whole lot of it in my life.

This move was very bittersweet. I found myself wandering around our old apartment, tripping over memories at every turn. This was where my daughter was brought home from the hospital. Where I paced the floor, obviously in labor but stubbornly refusing to call the doctor. This is the kitchen where, hands trembling, I found out I got into graduate school. The same kitchen that I stumbled into, delirious and giddy following post-graduation celebrations. That place saw more laughter, arguments, tears and pure joy than its square footage should have possibly been able to hold.

It was during this move that I discovered I am, in fact, a hoarder.

Not of the dead cat carcass variety. Thank goodness, because I don't need A&E knocking on my door.

But I hold onto material things as a way of keeping a grasp on the past and ensuring my foothold in the future. Each item I packed or threw away told a story for me and the process was painstaking. Each outfit of Grace's that I had stashed in our storage closet? I remember her wearing them and for a moment it was if I had my tiny baby back again. Those stayed. 7 old pacifiers- I only kept her favorite one. Birthday cards from 3 years ago? It was time to let go of those. But the high school year book that absolutely walloped me with the words scrawled on the page and the pictures and the people who have disappeared out of my life or have stood solidly by my side.. That's sitting in the top drawer of my nightstand.

You wouldn't believe it by looking in my new basement- but I threw away or donated
a lot of things. It was utlimately, a free-ing sort of process. I felt lighter, somehow, with each piece of mismatched Tupperware that I tossed in the trash.

Recognizing this pattern with the material things in my life led me to wonder...how many other "things" am I holding onto unnecessarily?

Turns out- it's a whole lot. This time of year naturally lends itself to retrospection. There are things that have happened in the past year that I am not particulalrly proud of. There are lots of things, however, that I believe I mananged to get right. And each time I found myself in tears over a photograph or angry or uncomfortable or anxious when remembering the history of something seemingly unassuminging and benign, I began to understand how little I am able to let go of.

Right now? My tupperware cabinet is perfectly organized. Each piece has a matching lid and are stacked with like containers. When I open the door I am no longer dodging an onslaught of tumbling, disorganized mess. I know it won't look like this every day, maybe not even every week...but I'm working on it. I'm working on giving each thing in my life its appropriate place to belong. And knowing how to throw it away when it grows too big or too old or doesn't quite fit anymore.

It's a process. One small teeny tiny step at a time. If I manage to avoid a collection of flattened cat carcasses in the process? Then I think I'm doing just fine.

"Problems"

I try not to irrationally, emotionally vomit too much on this blog. I try and keep off my soap box and stick to bragging about how awesome my kid is ( which is not totally obnoxious or anything) and try to make people smile.

But sometimes I just can't seem to keep my big mouth shut.

Earlier this week, I stopped at a gas station on my way to work to buy a can of soup for lunch. (procrastinating food shopping seemed like such an excellent idea on Sunday afternoon...Monday morning? Not so much) While making the difficult early morning choice between Tomato and Hearty Vegetable, I overheard the cashier asking a gentleman if he would like to donate a dollar to support cystic fibrosis research. His reply? "Jesus! I wish you people would stop asking. I don't donate any money to this bullshit because none of my kids have any problems."



Listen. I know this time of year is one of penny pinching and paycheck stretching.
I also happen to possess the fatal flaw of always giving people the benefit of the doubt (which tends to leave me extremely disappointed roughly 75% of the time) so my initial thought/hope was that this guy simply didn't have an extra dollar to spare and that his oh so tasteful response was simply his masculine bravado speaking. And, in the interest of full disclosure, I am also a giant sucker. Nine times out of ten, you ask me to donate a dollar
to a cause I'm even remotely familiar with? I'm going to do it. Tagging little league sports player are THE worst. I get this insane guilt if I don't give them a dollar when I go in the store
as well as when I exit it. Like maybe they won't remember the dollar I just donated but they will remember me as the grouchy lady who didn't give them a measly buck.


But honestly? Your kids don't have any problems? Even MORE reason to donate to causes for
families who are less fortunate than you. Pay it forward, keep you karmic balance in the positive, all that jazz.

And a little sensitivity wouldn't be out of place, even for a big macho man like yourself.
That cashier who politely asked you to consider a donation? Maybe she lost a sibling to CF. And guess what? MY kid DOES have a "problem". She's perfectly healthy now, but the future of
her health is reliant upon the generosity of other people, donating money towards research for better treatment and hopefully, a cure for the backwards gene that she had no control over inheriting. And I happen to personally know an absolutely amazing family whose life is
affected by CF every single day. And instead of lying down in the face of this ominous diagnosis, they started fighting. And their incredible little boy is surrounded by positivity and love and they have single handedly raised an unbelievable amount of money for CF research.

So if you don't have the cash? Politely decline. You never know who is listening. When you find yourself face to face with seemingly unsurmountable odds, as we all do at some (or many)
points in our lives- it's those random, subtle acts of kindness and generosity of spirits,that mean the most.

Trust me, I know.


When I got up to the counter to pay for my tomato soup, I quietly offered to donate $2.

One for my karma and one for his.

CAKE

I should probably launch into an explaination about why I haven't updated this blog in over 6 months. But the excuses wouldn't be good or new or interesting. I've been without consistent Internet for a while, without inspiration...

Today I read in an article that psychologists suggest that between the ages of 8 and 10 we are the most authentic version of ourselves. This is a humbling and startling statement ( if it's accurate, my authentic self is awkward, loves Titanic and is going to marry Leonardo DiCaprio) I'm going to challenge this however- because at 2 1/2, Grace Margaret Cayer is shockingly, unequivocally authentic. She also happens to be living her life more than a little bit like exactly how I wish I lived mine. Let me offer some examples..

1) She says no. Often. And she means it. Wearing her coat when it's below 40? Eating all of her vegetables before having a cookie? Better brush off your negotiating skills and offer some pretty hefty compensation or fool proof reasoning. While slightly infuriating, you've got to admire her tenacity. I find myself saying yes all over the place in my life while inwardly screaming "NO".

2) She embraces her innate sense of style. If it has a monkey on it? She's rocking it. Jeans "don't fit" and she currently insists on wearing only leggings and sweatpants. The.girl.is.a.genius.

3)She constantly pushes the boundaries and thinks outside the box. Don't have a phone? This Lego will do perfectly to call and text Grandpa. Want a pet cat? Oh, I just happen to be carrying around a very cute kitten in my pocket- just be sure to not sit on him. She is flexible and innovative and is constantly using her imagination. This is generally appreciated, until she uses her imagination to tell her Mimi that "Mama makes me sad because she throws me out the window".

4)She forgives instantly and trusts implicitly. Just last night, I told her that she couldn't
go to London on an airplane until she was potty-trained because diapers were not allowed on airplanes. This is now an irrovokable truth. Lest I become too drunk with this power, she has also taken to liberal use of the phrase "Are you KIDDING me?" But she doesn't waste her energy on grudges or resentment. Balance can be restored in her world with a snuggle, a kiss, a princess bandaid.

5)Exuberence and enthusiuasm. She's got 'em. Everything is an adventure. She gets excited about eating dinner, excited about reading the same book at bedtime, ecstatic when I pick her up at school. I know this won't last, I've seen glimpses of it slipping away- but that joy? It's one of my favorite things about her, something I hope she holds onto always. It gets forgotten so easily and life quickly becomes mundane without it.

6)She always says exactly what she is thinking. She tells people when she doesn't like them (this is typically very fleeting), sings a little song about being able to see various parts of my anatomy when we are together in dressing rooms (sorry, patrons of Target) and best of all- bestows I love yous and thank yous at every turn.

7) She is the most confident and unknowingly hilarious person that I know. She will recite, verbatim, that she is "Beautiful, smart, funny and kind".  She will hang up her play phone and tell me "You called me Mama. To tell me that you love me. Because you do", I will make it my personal mission to remind her of this every day. She is all of these things and more- that is her most
authentic self.

I have created a world for myself where I am constantly biting my tongue, holding back, doubting myself. I have no desire to be the person my 8 or 10 year old self wanted me to be (mainly because I think that version would be unbelievably disappointed that I did not, in fact, marry Leo).

That person has been replaced by the type of mother I want to be and exactly like the two and a half year old daughter I'm lucky enough to have.

Fairytale Dreams...

Last night Grace and I laid together in her new princess tent. We had some books in there and some baby dolls…but we chose just to be together, hand in hand, staring up at the ceiling. Grace insisted on putting on her princess pajamas for the occasion. Because of course, Grace knows she is a princess.

I am envious of Grace. She approaches everyone with this attitude. She assumes everyone will love her, find her charming and that she will always get what she wants. Mostly, she’s right. I don’t know what her dreams and aspirations are, but if I had to guess, I would imagine she will seek out a career that will allow her to always be the center of attention. She will want to be surrounded by people who she can surprise with affection and kindness. She will want to marry someone who is tall like Daddy and who understands the importance of her beauty sleep and can fetter her stubborn nature.  They also must be willing to take her dancing.

And of course, she will be a princess. With a castle. And Prince Charming. And probably a pet monkey.

 So, when do we stop believing in ourselves?

When do we stop looking for that fairytale?

When I think back to things I wanted when I was 6….9…even 14…where did that girl go? The girl who dreamt boldly. Who drew hearts around boys’ names in her diary, but didn’t lose sleep when the names were scratched out. Who recognized how smart she was and knew exactly what she deserved. Who planned out the path her life would take and didn’t imagine any deviation would be possible.

Life gets in the way of the best laid plans. Dreaming becomes scary instead of liberating. Confidence translates to cockiness and those boys? They grow up. They make mistakes. They surprise you.

We have little control over the shape our fairy tale takes. But we have complete control over how we react to these circumstances.  We can make the conscious choice to keep dreaming, even if it’s petrifying. We can take risks, appreciate our strengths and find ways to compensate for our weaknesses. We can believe that we deserve it all.

As for Grace? I will revel in her schoolyard crushes. I will support her in her early career goals (mine was to be a zoologist or the author of romantic novels set in Victorian England...those are close to reality, right?) and simply smile when she changes her mind again.

I will be there to remind her, every step of the way, that dreaming is what challenges us to be better. That comfortable isn’t always the same as safe.  That being smart is way more important than being beautiful (but she’s got that going for her too).  That the easiest choice is almost never the most fulfilling one. That fear often inspires greatness. That sometimes, you’ve got to breathe and just believe.

If you need me...

I'll be the girl leading by example.

On The Day You Were Born...

Dear Grace, 

You are a blink of an eye away from turning two.

I can't tell you the way just thinking those words crash right through my heart.

I'm so proud of all you've become. But I'm heartbroken at how fast time is racing by.

Your daddy always jokes that in 14 short years, you'll be asking to borrow the car.

I never laugh, because I know that he's right.

I wanted to tell you the story of the day you were born. I'd like to make a tradition of telling you about it on every birthday. Someday, the idea of you being brought into this world by anything but the stork will disgust you. That's probably about the time this tradition will go on hiatus. But when you start having children of your very own, you will want to know every detail. And by then, I will certainly have forgotten all but the best parts.

I will have forgotten about how the entire world took on a new tint when we learned you were going to be born. Here were people shopping for groceries, and we were getting ready to have a baby. We told everyone that we knew that you were coming, including every cashier we encountered that day. I will have forgotten that Daddy parked at the wrong entrance of the hospital and I refused to get back in the car so we had to walk the whole way around the building. Then the elevator to the labor and delivery floor was broken.

I will have forgotten the pain (thank goodness) and how Daddy broke the showerhead at the hospital trying to adjust the pressure, so that scalding hot water was beating endlessly against my back and I didn’t even care. Once you were born and I went to use the bathroom, the ceiling was leaking. I will have forgotten that I had the thought while in the shower alone that I hoped Daddy thought you were perfect because I was not ever doing this again.   I will have forgotten how I demanded an epidural because I thought you were going to take hours to arrive (when in reality, I was moments away from delivering you) and when the anesthesiologist peaked his head in the room and saw you screeching, he said “Guess you don’t need me, good job”. I will have forgotten how I thought that he was really lucky that you were so beautiful because I might have stood up and kicked him in the shins. I will have forgotten how Mimi actually pushed Daddy out of the way to be by my side for your grand entrance.  I will have forgotten that Grandpa didn’t even make it to the waiting room when he heard you cry for the first time. I will have forgotten that because I was scheduled to be induced the next day, Oma & Pops & Gram and Auntie had all turned off their cell phones. They weren’t expecting a call until the following day, so no one was around to answer the phone and Dad paced the hall finding someone to tell that you were here. He finally reached Grandma & Pepere in Connecticut and I don’t think I’ve ever heard him sound so proud.

You were born in the very early hours of Wednesday, April 15th, 2009. I was scheduled to be induced at 8:30 that morning. The original due date I was given was March 5th. I was also told you would be a boy. I don't need to go into detail about that debacle, because I promise I will NEVER forget about it.

When our doctor told us that I was "favorable" for induction & already 3 cm dilated, Daddy and I were thrilled. I asked the doctor what the chances were that I would have you on my own before 8:30 am tomorrow, he almost laughed in my face. Naturally, I believed him. That was my first mistake.

We spent the day calling practically everyone we knew telling them the good news. We actually jumped up and down on our bed in excitement.

This, in retrospect, was probably my second mistake.

We already had plans for dinner at a friends house, so we decided to go anyway. I remember distinctly feeling that whip crack of pain, my first genuine contraction. As I doubled over, I thought, "hmm. That's probably not good". Determined to wait until we were scheduled to be at the hospital, I didn't tell anyone. I forged ahead&enjoyed a delicious meal that has since been dubbed "the birthing burgers". On the way home, my anxiety kicked into over-drive. I worried that you might have an extra arm that ultrasounds had somehow missed. That you would be born less than perfectly healthy. That you might look too much like an alien. That you might not love me. That I might somehow be the world's worst mother.  Daddy told me we would love you anyway. (Turns out, he was right).

When we got home, there was work to be done because, you know, we were having a baby the next day and all. I tried to keep busy by putting clean sheets on the bed. Before the job was even finished, I knew something serious was happening. Your dad was watching (of all things) WWE wrestling on TV. This was not really a habit of his then- and it definitely isn't now, because I can't even hear the announcers voice without getting ptsd-esque flashbacks. I decided to "hop in the shower" where I spent the next 40 or so minutes trying not to panic as it slowly became painfully (pun intended) apparent that I was actually in labor.

We tried to time contractions. We failed because even as Daddy crawled in bed to hold me & comfort me (achingly sweet gesture, until I realized he had actually fallen asleep and subsequently wanted to kick or pinch him. Hard), I was too busy being in pain to tell him when I was having a contraction and although he is a lot of things, he is not a mind reader. Turns out I was having back labor, so I didn't really have a break between contractions. Thanks for that.

Daddy wanted to call the doctor. I wanted to be ABSOLUTELY SURE I was in labor before we called.  I'm not quite certain what kind of proof I was looking for, but when I ran to the bathroom to throw up for the third time (that’s a lovely little part of labor that we like to call transition, or a special little circle of hell), Daddy whispered into his cell phone to the doctor on call that he thought we should go to the hospital. The doctor told him that I probably had a virus, that he should tell me to take some Tylenol and “see what happens”. Daddy replied that he didn’t want to see what happens, because he was fairly certain that what would happen would be a baby.  The doctor exasperatedly agreed to let us come in, for some IV fluids so I didn’t get dehydrated. Thank goodness that Daddy was so persistent, or you would have been born in our kitchen.

We arrived at Portsmouth Hospital around 10:30 pm. My water broke at about 11:15. You were born at 1:33 am. I told Mimi that I thought I needed to push & then subsequently told her not to tell the nurse (I was so helpful and facilitating thought this whole process, huh?). The nurse (who’s name was Lou & I will never forget her) decided to check me, with a roll of her eyes, to appease me and realized, one gloved, that we were “having a baby”. She pleaded with me not to push and called first for the OB GYN and then for any doctor in the ER. There was no warming table, no scale in the room. Nothing. And after about 5 pushes (which I made absolutely no attempt to stop, I’ll have you know) you were here. Lou caught you one handed, as she didn’t have any time to put on a second glove.  I asked if you were ok, as you didn’t cry right away (you’ve been making up for that ever since). You were immediately placed on my chest and your first out of utero act was to poop all over me. I was so elated I barely even noticed. Then the doctor arrived. Clearly, you were far too busy and important to wait for him.

This is the part I won’t ever forget. You stared up at me, alert and so alive. Your eyes were somehow wise, as if we were meeting again after a long absence. You were strong as you grasped my finger and searched for my breast. You made Mimi & Grandpa cry, but I, who cries at Hallmark commercials, had no tears. You had made me stronger. Equal parts wise and clueless in one fell swoop.  I didn’t feel as though I was meeting you for the very first time, because I had confided in you for nine months. Told you my fears. Laughed as you rippled across my belly.  I felt as though I had found my best friend. That we were together at last, where everyone could see for themselves how special, how brilliant you were.

I won’t ever forget those first few days. How our hospital room was constantly full to the point of explosion, full of people who marveled at your perfection and who love you still to this day. How we didn’t sleep for almost 48 hours, functioning on the fuel of our excitement. I can still will myself to feel that calm and still of the first morning, before any visitors arrived and it was just the three of us, as a family, in that small hospital room with sunshine streaming in through the windows, oblivious to the world marching on without us. When our life gets crazy, when I forget to breathe and feel like I might teeter over the edge, I reclaim that moment, hold it in my mind and my heart. 

Thanks for making your way into this world far easier than the 9 months that preceeded it. Mostly, just thank you. 

Love you to the moon & back, 

Always yours,

Mama

You pulled my trigger


The song that rang out was so pretty and new


How did you get so wise


With one look in my eyes



I guess that's what angels can do 

In which I don't even attempt to reign in my wordiness or edit my thoughts and just get honest...

You may have noticed that a few weeks ago, the Lariviere-Cayer clan became local celebrities. If your definition of "local celebrity" includes a 25 second segment on the NH news channel wherein the news anchor gave Andrew my last name AND called me Justin, that is. 

You can view the longer piece that the Boston Channel aired here. It's definitely worth a look, mostly because Gracie steals the show, as usual. 

It was considered a "human interest" piece on our families experience with VHL. What is VHL? 

Exactly. 

VHL is a rare, genetic disease. In normal people, the VHL gene is a tumor suppressing gene. In people with VHL, this gene is mutated or incomplete in some way, causing the body to form tumors in various parts of the body. These tumors are not cancerous, but can cause various symptoms & complications depending on where they are located. 

  VHL has been featured on medical dramas such as House (of course), Private Practice and most recently, Grey's Anatomy. Which is how we ended up on the news. The VHL family alliance sent out an email, asking its members to write letter to their ABC affiliated stations regarding the misrepresentation of VHL on Grey's Anatomy.  So I did. Within a week, I had been contacted by assignment editors from both WMUR and WCVB. 

(Side note- If you are an avid Grey's watcher, it appears that ABC chose to remove the part of their story in which the character suffering from VHL flies into a violent rage due to his adrenal gland tumor, known as a "pheo". This negative, inaccurate portrayal was what the family alliance specifically took issue with) 

When I first met Andrew, he spoke of his diagnosis as non-chalantly as someone might talk about having the flu. He had brain tumors, he discovered them after he had to have life-saving, emergency brain surgery at 20 years old. He will probably always have brain tumors & will  have to have brain surgery when the tumors create cysts. He could potentially get tumors in other parts of his body and had to adhere to a rigorous screening schedule involving MRIs, CAT Scans and ear & eye exams. No big deal. He handled the disease with a self-depricating sense of humor that was both reassuring and alarming. 

When I was about 6 months pregnant, Andrew started to have symptoms of another cyst. He was losing his balance frequently. Dry heaving in the shower every morning. Although we were living together, he hid his symptoms. If he bumped into me while we were walking, he made it look like it was on purpose. I distinctly remember him almost falling down an entire flight of stairs at a friends house and laughing about it, thinking he was being foolish. Finally, he knew he couldn’t ignore it anymore & made an appointment for a MRI. 

 I went with him to Boston and sat alone in the waiting room during the procedure. It was the first time I truly contemplated this disease becoming my reality. With one hand on my rounded belly, feeling the cartwheels and somersaults, I wondered how I would feel about sitting in a waiting room like this not for Andrew, but for our child. I am about as anxious as they come, but for some reason, I felt an eerie sense of calm. I just knew, as I know today, that things would be ok. That there was nothing for me to worry about. When I relayed this to Andrew, he took it to mean I believed that our child wouldn’t inherit VHL. For me, it meant that I knew I would simply handle whatever came. I wouldn’t have another choice. 

   Andrew did indeed, have a cyst the size of a golf ball in his cerebellum. When we went to visit with his surgeon, I watched in horror as he failed every neurological test. He couldn’t touch his nose with his eyes closed. He couldn’t walk in a straight line. Surgery was not only necessary, it needed to happen the following day. 

   8 hours in the surgical waiting room crawled by. I forced myself to eat & my friend Robyn tried everything she could think of, including a game of Yahtzee that almost got us evicted, to keep me occupied. Later that evening, when it was time to go see Andrew in the Neuro ICU, I thought I would be fine. My mom is a nurse, I grew up around hospitals, I was prepared for the tubes and the bandages and the IVs and the monitors. 

Wrong. My knees buckled. Robyn says I paled instantly. Andrew’s sister encouraged me to come close to him, kiss him and let him know I was there. I couldn’t move and uttering coherent words were out of the question. Robyn told her we needed to leave (and later confessed to me she was certain I was seconds away from hitting the floor & winding up in a hospital bed myself) and once we hit the hallway, I dissolved into her arms, sobbing. Andrew’s family, veterans of this brain surgery business, assured me he looked so much better than last time he was here. But I barely heard them. The man I loved- my best friend- looked broken. Here was the man that was strong & brave and could make me laugh no matter the circumstance, looking small and weak and somehow shrunken in a giant hospital bed. 

   I was staying with Andrew’s cousin in Cambridge, who was nice enough to have me while he was at Mass General. When I got into bed, I thought I wouldn’t be able to banish that image of him from my mind, that I would never be able to sleep. Instead,for the first time I felt the full weight of my exhaustion and instantly fell into a dreamless sleep. By the next morning, Andrew was teasing me, joking with nurses, and holding my hand. I was able to almost completely banish the fear I felt only a few hours before.

The day we found out Grace had VHL, that fear returned. 

Andrew came home to find Grace and I snuggling and giggling, rolling around on our bed. It seems that moments of pure, unadulterated happiness always precede bad news. He walked into the room, picked Grace up and held her close to him. And whispered “I’m so sorry”. 

 I knew I couldn’t cry then. Instinctively, I knew my brave face was important. I hugged them both, reminded him that it wasn’t his fault. Tried to joke that my “good” gene was a wimp & couldn’t overpower his. Andrew hadn’t know if he even wanted children, because of this moment. When we found out I was pregnant, I promised him it would be ok. I was wrong. I walked out the door to go to class.

I’m not sure I even made it out of the driveway before I crumbled. I called my mother at work, who hearing the terror & sorrow in my voice, started to cry herself. We talked each other down from sadness for the majority of my ride into campus. I parked my car, but found myself frozen. I called my dad, who thankfully, remained calm. I voiced my biggest fear out loud, in one breath. That I would lose them both. That this disease would steal the two people who take up this massive space in my heart. I was able to be calmed & comforted enough to walk to class, but my tears were constant. Even though I felt relatively collected, I simply couldn’t stop crying. For almost 45 minutes of my class, I sat, typing out notes on my computer, crying silent, continuous tears. Finally, I grabbed my things and just walked out. Robyn found me pacing in front of the building and we walked together, sometimes talking, sometimes crying, until I felt..ok. 

When I returned home, I felt oddly refreshed. I knew we could handle it. As a mother, I was saddened. I felt (and still do) the dull, aching pain of the pull and tug of guilt and grief. Of wanting to take it away from this innocent, beautiful child and place it on myself. I would take those ominous three letters away from both of them, if I could. We chose not to tell many people right away, I think mostly so we could have time to digest it ourselves, without constantly ripping the band-aid off a fresh wound. Things unfolded naturally, and many people did not find out about Grace’s diagnosis until we were on the news. I worry that this hurt people, but truly, it was just the best way we knew to handle it. 

The “good” news? People with VHL are rarely symptomatic before adolescence. Some people live their whole lives without even knowing they have the disease. Grace is, right now, perfectly healthy. But her childhood will not be entirely typical. It will be filled with trips to Boston for screening and yearly appointments with the geneticist who is following her case. I will have to try and explain to her that she & daddy share this backwards gene, that might make her sick someday, but that we are doing everything we can to keep her healthy. 

We took her to Boston Childrens for her first screening when she turned 1. It was a fairly simple eye test, but involved a lot of down time. In that waiting room, I looked around at the children who were very sick, children with multiple disabilities and challenges. Here I was, trying to reign in this beautiful, energetic toddler who looked, on the outside, to be the picture of health. I felt a very different guilt. Guilt for being so scared. Guilt for mourning this for so long. Grace will laugh. She will play. She will roll her eyes at me & slam her bedroom door. She will make mistakes, fall in love & grow up so fast she will surely break her mother's heart.   How could we think of ourselves as anything but lucky?

It is my greatest hope that my daughter will live a life symptom free, or that by the time she reaches adolescence, the diligent efforts of the VHL family alliance and their researchers will have resulted in a cure. Short of that however, I know that my daughter will live a fulfilling, rich and rewarding life, regardless of her diagnosis. She will not be defined by the label of disease, but rather by the infectious nature of her laugh, the way her big blue eyes shine and by countless other beautiful, wonderful attributes that have yet to be discovered. She will be stronger because of this.This will help her to respect the fragile balance of life and love and savoring every minute. I know she will have a special bond with her father, that goes beyond shared genes- something that I will feel lucky to stand at the edge of and marvel at for a while. 

 I can't begin to know the challenges we will face or the roads we will have to travel. But I know we will do it together. 

 Mostly, I know that in this life we are not given things we can’t handle. I find great peace in that. 

Want to help? Spread the word. Educate people about VHL. Donate whatever you can afford..even just $1..to the medical research being done by the VHL family alliance. Added bonus? With a cure for VHL also comes a cure, or better management, for many kinds of cancer since the diseases function in such a similar way. It is on my list-of-things-to-accomplish-when-I-FINALLY-finish-grad-school to organize some sort of annual fundraiser for VHL (suggestions and helpful hints would be much appreciated!)

This wasn't easy for me to write about. This is our reality, mostly private & sometimes painful. However, there are often days and weeks that go by where I don't even give VHL a passing thought. Lately, it has been weighing heavy on my mind and my heart. 

But see how easy it is to get distracted around here? 

Just ONE.

I'm not big on resolutions. Of course I make them. Swear to myself I will keep them. And in two weeks (or two days) I'm already making excuses, exceptions to my resolutions. Before long, they are entirely forgotten, almost laughable. 


So this year, I'm only making ONE resolution. This year, I vow to be kinder to myself. 


You see, I have this inner voice. I'm pretty sure my inner voice belongs to a impossibly skinny, ethereally glamourous yet concretely successful Martha Stewart-esque career woman housewife hybrid. I'm also pretty sure my inner voice is a giant b-i-t-c-h. 


This voice is the one the berates me when I reach for a chocolate chip cookie or an extra slice of cheese. It's the voice that sighs dejectedly when I notice a film of soap scum on my shower or when I face the 8 loads of laundry waiting to be put away. It's the voice that insists that oh but she is growing up so fast and you simply can't waste a single second of glorious motherhood maybe you just aren't fit for this and maybe you just aren't the mother everyone thinks you are if you can't appreciate every single second with your beautiful baby when I attempt to put Grace down a half an hour early for her nap, because I just need some time without whining, time where I can get one single task done without interruption. It's the voice that reminds me that I should be trying harder, when I sit down last minute to finish a school assignment, because it's your career after all and doesn't the future of you family rest on you finishing this degree? This voice reminds me, every day, that I could be a better mother, a better daughter, a better fiancee, friend, student, cook...the list goes on. and on. and on. 


The voice doesn't remind me, however, to take better care of myself. To sleep. To not worry so much every day about what I haven't managed to get accomplished that I give myself a headache. To stop pointing out my own flaws. To realize that when your child's latest communication style is high pitched whines- you might not love every second of motherhood. And that needing a time-out, a moment to yourself to BREATHE- that isn't the same as failure, or bad parenting. 


So in 2011, I will be kinder to myself. I will remind myself that I am in the home stretch. That soon, my existence will no longer be the constant upheaval and uncertainty of school and exams and pressure. That yes, Grace is growing up faster than I would like, and that it is ok to feel sad and enchanted by that all at the same time. That dreaming isn't the same as being unsatisfied. I will read more & will not feel guilty about sleeping an extra 30 minutes on a Saturday morning. I will write, because words are cathartic and powerful. I will continue to adore my new camera, foster this new passion, edit pictures until my vision blurs, because someday these images will be cherished memories. I will take each day as it comes, one day at a time. 


I need to calm down. I need to take deep, even breaths. I need to stop placing value on things that don't matter. This time next year, I will have forgotten the days that my house went unclean, the hours (upon hours) that dishes remained in the sink. But the moments of infectious, belly-aching giggles with Grace? The sense of achievement & relief that I will feel come August? The rejuvenating power of time spent with friends, over glasses of wine? These are the things I will remember. The things that I need to place priority on. 


And that inner voice? I will tell her to SHUT UP. That I don't want to be perfect, because imperfections are interesting. And laughing at myself makes this whole messy life a lot more enjoyable. 


I will also tell her, in the politest way possible, that she is a raging she-witch. 

 Bring it on, 2011...we're ready for you.