*Pandora - yes please!*

I so love to read, but when school starts up again - reading is a luxury for sure. I have it in my schedule & I try to read a few pages, but it can be tough to concentrate with grades to be entered, lesson ideas to be implemented & lately - a new schedule to spin around in my mind. These things come to to surface, not because I feel obligated, but I really do enjoy the creativity I get to use in my job. The thing is, I am MORE creative when I read. So - the internal battle continues. (Add in exhaustion & there you have it. Erin vs Time - the war of the century).

During the school year, I find that music will often prevail as the spark for inspiration & daily reality checks. I wish I could just spend a day listening to songs & following along with the lyrics. The real lyrics - not the ones that I sing along. [Did you ever sing along to every song using "squirrel" for "girl". Pure genius! So fun.] Pandora has the lyrics to most songs show when they play. This isn't great for the commute, but a cool aspect, nonetheless.

These lyrics, I know quite well. Thank you, John Meyer, for your spot-on songwriting. Not too shabby to gaze upon either. (Sorry, Dad - although...you may agree? ha!)

So - let's take a journey with Mr. Meyer - (push play if you haven't already! So amazing.)

Today, September 11th, is a sentimental day that prompts much reflection. I spent a little time following a moment of silence to share my memories of September 11, 2001. Some of my students were only 4 in 2001! September 11, 2007 won the reflection war today though. It probably always will.

This was the day that Avery had her final Lumbar Puncture & Bone Marrow Aspirate. This was the day that I laid in her crib with her while 2 doctors that I respect very much told us that 96% of that BMA was cancer cells. We didn't need to tell them immediately, but we were sure. That was it. We were done. No more poison, no more sticks, no more pain, no more close calls, no more...just - live it up while we could with our happy, beautiful Avery.

We weren't alone that day. Another family was hearing eerily similar news. Earlier in the day our girls had fatefully locked eyes while they were both in the sedation unit prepping for their tests. I'd seen them do it once before & I will never forget it. It is like a scene in a movie where two people have a conversation without saying a word. It was an amazing conversation, I know it! Though it brings tears to my eyes, it is a comfort. Like best friends who have each others' backs. Like sisters sharing secrets. Hope. Love. Heart. Life.

Those two girls shared that moment with their mommas & for that I am grateful. For that I am comforted. I love you Michelle! I miss you, Tara & I miss you, Avery. I KNOW the heart of life is good. No matter how short, tragic or in my case, broken. (Sing that chorus John Mayer!)

I hate to see you cry
Lying there in that position
There's things you need to hear
So turn off your tears and listen

Pain throws your heart to the ground
Love turns the whole thing around
No, it won't all go the way it should
But I know the heart of life is good

You know it's nothing new
Bad news never had good timing
Then the circle of your friends
Will defend the silver lining

Pain throws your heart to the ground
Love turns the whole thing around
No, it won't all go the way it should
But I know the heart of life is good

(Whistle Interlude)

Pain throws your heart to the ground
Love turns the whole thing around
Fear is a friend who's misunderstood
But I know the heart of life is good

I know it's good

*Awesome*

OK. I have a serious issue with sarcasm. I use it well & often. In the teachers' handbook for my student teaching assignment back in the dark ages of 2001, there was actually a "rule" saying that teachers would not use sarcasm in the classroom. - I had a slight panic attack & then continued my journey. I break rules all of the time. I generally just don't like being told what to do. Sarcasm is part of my personality (& pretty much what allows me to be a high school teacher - all of my favorite (arguably BEST) teachers were sarcastic.)

My go to sarcastic phrase is simple - "Awesome." Some examples -

*Calvin - Mommy, me pooped in the yard (this truly happened last year. Judge if you must)
Me - Awesome.

*Daily comment from co-worker - Erin, you just spilled coffee on your shirt
Me - Awesome

*Me arriving for a long-awaited kid-free shopping trip without my wallet. "Awesome"

*The student comment section to this example chart would be too extensive for blogging - I will save that for a book deal some time in the future. And I could get fired for using such examples here....awesome.

This word has been haunting me today. In an effort to be a proud onco mommy, I was embarking on a tedious project to raise awareness for Childhood Cancer. (sarcastic). Ok, I was thinking of changing my profile picture to a picture of Nolan since Avery was my profile picture yesterday. I was on the iPad & like the AWESOME person that I am, I do not have a picture of Nolan on that glorious device (not sarcastic, I freaking LOVE that thing!) to upload as my profile pic. Unlike other mommas, I can just google my kids & download a picture to use. Of course THE video came up on the search &...I watched it. Awesome. (sarcastic)

So it's 7 a.m.-ish & all of the healthy people of the Perkiomen Valley are jogging/walking/biking by as I sit on the back porch & cry. Sweet. (My second favorite sarcastic spasm.) Calvin was loving the part with him & Nolan moving around. **Calvin, please don't ask to watch it again** Phew! Why should I cry alone? Instead of changing my profile picture today, I'll share THE VIDEO (this is said with a deep, scratchy, scary voice) as my Childhood Cancer Awareness outreach today, 9/2. I have a bad habit of assuming everyone knows the tale of Momma Gloom. So...those who know-won't watch & those who don't-will know soon enough. I should have looked at the YouTube hit count this morning.

That sucker got shared all over the place today. Rah Childhood Cancer Awareness! Go Avery & Nolan. Oh! And everyone is telling me how awesome I am. Awesome. (sarcastic, remember?)

When it comes down to it, I'm no more awesome than the next girl. I try to be amazing & a bit of a rule breaker because it is super fun, challenging & a little rebelious. I don't like it when people tell me what to do so I like to make my own way. Unlike student teaching, there's no written rule that says that a mom with 2 dead kids can't be fun, but there are some unwritten rules & misconceptions out there that I like to rebel against. I like to have fun, I like to help others, I like having friends, I like meeting new people & I like going places & doing stuff. Look at me! I'm just like everyone else! (So much for rebellion.) But the unwritten rule is that I would be best suited for a life-long sentence of staring at the wall. Not THIS momma! No way. I have things to do & coffee to spill.

I appreciate all of the kind words that are sent my way. My close friends are reminding me that they love me (thank you. I love you more!), friends of my close friends are reminding me that they love me because their friend loves me & some people I don't know & I will not try to figure out their motives. Let's just assume that they are sane & well-intentioned (please do not reignite the stalker, please do not reignite the stalker, please do not reignite the stalker). Today I am even more thankful for my "you are awesome" messages. First, my friend, Cat, provided this -

Bahahaha! This I love. I didn't ask for this awesome. I caught it from my kids. It's hard to explain.

And then, some less than empathetic comments emerged about THE VIDEO (remember to make the voice!). Conclusion. I would rather be uncomfortable in owning my Awesome diagnosis (see above) than having my kids' lives & my life described as "brutal". THE VIDEO isn't brutal. It made you cry. I am very sorry. Really, I don't enjoy making myself, my family, my friends or strangers cry. THE VIDEO is beautiful. It shows my AWESOME kids & people who love them. It's a true story & it's our story & if that diagnoses me with Awesome or infected with Awesome or A.W.E.S.O.M.E. + (did you get that?! Pretty funny, right?!), so be it.


***Nerd Alert! - In an effort to overuse Awesome today & get more comfortable with accepting it - I did a Pinterest search of "Awesome". Do it! It was fun.**

September is...

Did you know that September is Childhood Cancer Awareness Month? Gold Ribbon.

There can be quite a bit of controversy during September. This can be a delicate topic, so I will - as I feel appropriate - tread lightly. Can you help all of the families who have faced, are facing or will face childhood cancer to spread awareness this month? Share Avery & Nolan's story, share what you know about my story, spread the word! All cancers are not funded equally. September is the month for GOLD ribbons.

Today I spent a glorious summer day with a wonderful family. To those who choose to contend that childhood cancer is rare. I say PHOOEY! You can use my freaky family stats or you can take a good look at my friends list or you can spend a day at the beach with 2 moms who lost 2 Averys within a year of each other. You know (and I have to hold my breath as I type this) that there is a family right this second finding out that their child has cancer? Out of no fault or reason or known cause. It was me, twice. It could be anyone. One in 300 boys & one in 333 girls will develop cancer before their 20th birthday.

For all of the sadness that cancer has brought into my days, I have wonderful friends that I would never know would it not be for our children's cancer diagnoses. Amazing memories were made today. A day at the beach with football, funny faces & rides. In reality, this is just the 3rd time we've been together. Some of the kids just met each other this morning, but we just go together like peas & carrots.

Onco moms can fall in friendship with each other so quickly because we speak a secret language & we live in a way that is different than everyone else. Certain things don't seem so important anymore, some things drive us all crazy & we have a sense of humor that is one of a kind. We check in on each other casually & often. But the unique gift we have is that we love each others' kids like our own.

When we're on the beach together, you can feel a forcefield around us & our kids. We're an amoeba of care & fun. We all just fit together so naturally. I have described my broken heart before in that a broken heart & love have a similar feeling. Maybe our broken hearts make more room for more love?

With all the broken pieces of my heart - I LOVE my onco mom friends & in the spirit of awareness tonight - let's see how full our momma hearts are - We love our Avery & Nolan and we love like our own - Avery, Jacob, Tara, Mackenzie, Josh, Jess, Jordyn, Luke, Andrew, Jaden, Victoria, Dante, Nick, Trey, Luca, Kayla, Kiara, Elizabeth, Gabby, Mary, Kyle, Gia...

...my cup overflowith...

Birthday parties...they're not just for the kids

Calvin's last birthday bash was when he turned 1. I think at that point, our family was just so relieved to have a surviving child who was well that we were all holding our collective breath throughout the following year - watching Calvin for signs of lethargy, bruising or bleeding. These are symptoms of leukemia, but in reality - they're also all part of having a little, growing boy.

This year, Calvin turned 4. His birthday party was a celebration of many things. I've already mentioned in a previous post that his reaching 4 without a cancer diagnosis is statistically significant. That can't be overlooked, for sure. But we also celebrated a kid, who developmentally has made leaps & bounds this past year. His words were late to be spoken, but he's at no loss for them now. He's a potty professional without any accidents. Which completely baffles me. I can only explain that he is a bit stubborn like me. He didn't want to try the potty thing until he was sure he had it all figured out. Same seems to be the same with socializing. He still battles shyness, but when he's confident with something or familiar with someone, he can play & participate now. Not so much at the beginning of the year when he was so painfully shy. Everyone enjoyed watching him interact with kids at his party. Here he is making the best of MiMi's special Glycerin bubbles at his party. (Thank you Christine for the photo...my brother's photos WILL be pried from his perfectionist grasp so we can all have some more great shots of our kids from Saturday).

Our family has much to celebrate all together too. We celebrate 1 year in our home. We've progressed from sleeping in the living room, all together like we grew so accustomed to doing while living at CHOP. Of course, tonight, Calvin wants to sleep downstairs on the couch. Little stinker. He has slept in his own room a few times, but we're both happy to share my room as our own. My dad makes fun of me for my bed filling my entire bedroom, but sharing a bigger bed is worth the lack of extra space. How do kids' elbows & feet have such sharp points?

We've grown, socially, by branching out our circle of friends & participating more. I know I spend a lot of time feeling like the touch of death. It takes a lot of courage to expose our hearts. Any gathering can be emotional. We see healthy families, sibling groups, parents calling their children by our missing kiddos' names, expecting parents & THE WORST-the seemingly ungrateful or less than warm parents. My stomach twists almost every moment of the day when I'm not within the walls of our house. There are reminders everywhere of what could have been, what we're missing & what we have to fight through just to get out of bed each day.

What we've lost DOES make us more grateful for each moment. We live a life with much different priorities & perceptions than others. We overlook details as we're caught up in controlling emotions & redirecting sadness into determination.

Birthday parties are not just for the kids. In addition to the adult beverages (what's a birthday party without some beverages?..somehow I have 1 in my hand & put it down so many times that by the time I find it a million times, it takes me all day to finish it.) birthday parties are an excuse to PLAY! Beanbag toss, bubbles, washers, duck pond - we had a blast. Like Calvin not knowing which toy to play with first, there were so many friends & family attending that I did not get a chance to visit with everyone as much as I would hope. I can only hope that every single kid & big kid had as much fun as we did - celebrating every single connection we still have or have made in FOUR years.

Being part of our world is not for the weak. It takes guts to be part of our world. THANK YOU for being there & sticking it out for the love of Calvin. We had a wonderful day celebrating EVERYTHING.

My house is a mess!

We're having a birthday party for Calvin tomorrow. I know that he is super excited. I was lucky enough to have some help in prepping this evening. Thank you to Kristy, Kimmie, Andy, Dad & John for helping me out today with things. And an early thank you to everyone who will bring treats tomorrow. Phew. Having help is wonderful.

But when it comes down to it, we won't have EVERYTHING on the list done. There will be dirt before guests arrive (& more after & that's exactly how we like it around the "farm"). Decorations that I had in mind won't get made. Decorations I already made will fall apart or get pulled down by Cal. Something will be missing. And all of that will be just fine. Just take a look at the impromptu baby collage. Ugh! The pictures are all falling. Maybe I'll have time to fix it & maybe not.

The help with baking tonight was clutch. It is so nice to finally take up an offer for help. This is something I have never really been able to do. We had a great time & if it wasn't for the pizza we ordered, where would we have put our cake pop masterpieces?!

 

The blue cupcakes were sacrificed for a game of wiffle ball with Calvin in the dark. My brother made my facebook status "Putting sticks into balls". Hijacker! I'm positive there will be Jack Russell hair on the couch. There WILL be cake. Calvin will love his party (even though he told me that tonight was a party too with everyone here helping. You're right, buddy!). I can only hope that everyone has a good time. We're doing cake, desserts & beverages. Really this is so I can hopefully enjoy some social time too. Nothing worse than hosting & not enjoying the time with friends who gather.

This is our chaotic life. I'm lucky to check off "have fun" on my to-do list every single day. Tomorrow will be no different. Happy 4th Birthday party Calvin!

 

Sunday breakfast

For many months now, I have been hosting Sunday breakfast at our home. We purchased & are renovating my Grandmother's home in hopes of hosting a social "club" for grieving families. Sunday breakfast is my version of practice. There is still work to be done on the house (especially the first floor) & it is a metaphor for the work that is to be done in the journey of grief for families as well.

This morning we enjoyed oven pancakes & waffles with a side of donuts, fruit & bacon. I thoroughly enjoy cooking. I just wish I had the same motivation for other endeavours...like schedules.

I am a terrible planner. I have a gazillion ideas & no real way of getting it done! It's a terrible life to live. But...it is also a wonderful way to live. I have always been a mess. My father actually calls me "Erin the Mess". If I have a drink, I spill it. If I do laundry, it ends up on the floor. If I have an idea, it gets moved to the back burner.

In many thanks to my children, I have come to live in the moment. I enjoy each moment, reflect on each moment & look forward to whatever life brings my way. My life has not been & never will be easy. We are a grieving family. We lived second by second through cancer battles with 2 of our children. Their legacy to us is a life full of kisses & hugs, last minute plans & living in the moment. It's a battle to live in the moment & to also keep the spinning & spiraling feeling at bay.

So...Sunday breakfast is an idea that I have kept up with. Keeping a schedule, if it is only for Sunday, is a goal of mine. In order to acheive a goal, I have to make it heard. So here it is. A blog. A blog of the accomplishments I make - great or small. The Momma Motivator!

This will be a different approach for me. No more announcing ideas, just showing off the finished product. My heart is racing right now at the thought of failing. I am great at creating ideas, but not so much at following through. I am putting myself on the line right now (even if it is just to me!). I want to slow down the spinning & add some more beauty to our home. Momma Motivator, do your magic.