Read About The Life, Lessons, Legacy & 💙 For BREE

How’s was your day?

Upset or depressed or mad or angry at something from today? 

Bar or restaurant not open? Can’t drive in the golf cart with your buddy?

Line at the nail salon long?

Sucks to have to only have 3 hours at the pool at your country club? And your guests cant be invited!?; OMG how horrible! OUTRAGE!

You don’t like wearing a mask in public? (Like go slit your wrists and get butt F*&#*% with a wooden tool. Jerk). Feel sorry for yourself?

Well let me tell you about our day.

Design Bree’s Grave Stone. CHECK

Figure out what to write on Bree’s Bench at the Cemetary. CHECK

Realize that no mater how beautiful or memorable the Grave Stone or Bench is; it doesn’t “do” anything to make us feel better. Bree isn’t here physically with us.

Plan how we think we are gonna spend her 10th Birthday on July 30th. CHECK

Add all of Kelly’s upcoming Dr appointments for her foot recovery (if COVID doesn’t happen; she doesn’t snap her leg like Joe Theisman. For the record; it was confirmed that LT was not in the continental United States at the time. CHECK

Cry my eyes out because I yelled at Parker when he was barking endlessly. All I could think about after was maybe he was speaking to us for Bree. Maybe she is trying to tell us she’s ok. Or maybe she’s trying to tell us that she’s scared. CHECK

Thought about what could be worse than losing Bree. CHECK

Shit I call that a full day; and it’s only 7pm.

Oh wait there’s one more.

As photos were rotating through my watch; one popped up that I haven’t seen or thought of. Definitely blocked this one out and I never block anything out. EVER!

It was the photo of Bree signing her name on the Clinical Trial “agreement”. A contract to sign to save her life? I’d gladly watch her sign that.  Na; it was to acknowledge that the treatment will make her sick and probably won’t work. Here little girl; sign this. Not that your parents signature is enough. We need you to sign it. Because we want you to know that you owe us something. You should be honored to sign this because really smart people developed this. And we need to learn from you after you die.

Think about that one for a minute if your not busy. The last signature of Bree that Kelly and I have is her signing a contract to acknowledge she’s gonna get sick and die. And she should be thankful for that.

Your day still bad? Mask still hurting your face or life? You look better with it anyway. How’s that wooden stick feel? Any splinters?

CHECK CHECK CHECK

But none of this is me. This isn’t Bree. This isn’t finding the Grey Lining. This isn’t what LiveLikeBree is. Snap out of it Brian!!! Stop feeling sorry for yourself. Bree’s the ONLY one that get’s to feel sorry for herself. She doesn’t get anything with us ever again. We have life. WE. HAVE. LIFE. Bree doesn’t. Bree doesn’t get any pool or nails or vacation or restaurant EVER.  How DARE I feel sorry for myself. How DARE you feel sorry for yourself.  CHECK CHECK CHECK MATE!

This isn’t 🍋 into 🍋🩹 🐛 into 🦋 ☔️ into 🌈

How dare I dishonor Bree. #LiveLikeBree

Bree’s grave stone & bench will be beautiful and people will sit on it to grieve the loss of loved ones for hundreds of years. And they will see it and honor Bree. CHECK

We will honor Bree on her 10thbirthday. We will be together, doing her favorite things, share her amazing memories, begin to find meaning in her loss. CHECK

Kelly’s leg? Not sure I have the silver lining on this one. Wait I got it; LT wasn’t here which means he couldn’t pick Kelly up at the bar she wasn’t at the night before. CHECK

I put my Bree sunglasses on and know that she’s is talking to us through Parker and telling us that she’s GREAT! BREAT! BREAT! BREAT! Wait a second; Bark and Great equals BREAT. BREE-AT! She’s BREAT!!!!! CHECK

Learned that there’s only one thing ever that would worse than Bree’s loss. And that be to never of had her or know her. And yes that would be worse. “Without love there is no pain”. Yes we have immense pain and only because we have immense love for Bree. And indeed; not having that LOVE for Bree would be worse than her death. CHECK

And now to Bree’s “final” signature. How do I find the Grey Lining on this one? After all; Bree won’t be signing her name on my birthday card this week, she won’t be signing her name for a car license or signing her name on the SATs for 200 points or on a college application or on her marriage certificate or her baby’s birth certificate or my death certificate. 

How do I make rainbows out of this one? I have to honor Bree so I must. Got it. CHECK

Bree’s “trial” signature signifies how unbelievably brave she is. She even tried to tell us that it wouldn’t work to “soften” the blow at the “end”. When you see me; ask me about that. Bree’s signature also reminds us that she has some deficiencies after surgery as you can see. But NEVER stopped her. NEVER bothered her. NEVER got in her way. NEVER even mentioned any of it. NEVER. EVER. BRAVE, AMAZING, BEAUTIFUL SOUL. CHECK

And yes the data that the Doc’s can collect from Bree’s participation can and will help another baby girl live one day. CHECK

I also have the 2ndto last final signature before that and I know when it is from and what the intention of writing it is. It was February 16th, the night before her last radiation treatment. Bree wrote her name on my iPad in teal blue to make a thank you note to hand out during her end of treatment celebration the next day. Never did print it though. A period of Bree’s life that she FRIGGIN ROCKED and BTW; she DID BEAT the Cancer in the area of her brain that was being treated. Yes; she did! When you see me; ask me about that. CHECK 

And YES that very signature lives on my arm forever now. #ThankYouBree. TU Matt for being my best friend when we were Bree’s age. The only person in the world that I would allow to do that Tattoo on me. So I’m really glad that you became a artist and that you are talented. CHECK

And finally to the signature on the Clue tally sheet. Clue is always a favorite of Bree’s and we played it a lot. It’s continued to be our game of choice and we find our family time playing Clue. My job it to make sure Alli doesn’t let the boys see her paper and that the boys don’t cheat. Yes a stressful job!! CHECK

And I have these memories. I have that Clue paper with her name on it. Her signature that is written during “innocent” times. For no real reason; just a little kid doing little kid things.  And we have these memories. We created these memories. We named these memories. We are creating new memories. New memories without Bree here physically making them with us. But Bree is definitely making these memories for us. CHECK

I miss you terribly Bree CHECK

I love you immensely Bree CHECK

Thank you Bree CHECK

I know you had a BREAT day! And if you didn’t, you are now. CHECK

Friday June 5th should have been a drive to the shore with the gang and gear loaded for the Summer at the beach.

Friday June 5th was supposed to be the follow-up MRI from Phase 1 of the 2 month Clinical Trial.

Friday June 5th was the 3rd day of our “new”; wait “new”; wait “new”; wait “new” normal.

All of the “new” normals were shockingly different and all hurt more and more but of course this “newest’ normal is most shocking and hurts the most. 

As things have “begun” to settle down and recognizing that things will change daily; the most evident change in our new normal is that our home is quite quiet and boring.  

Bree IS the life of the party and our new normal brings SOOOOOO many internal emotions, thoughts, hurt, pain, feelings; but the clear evidence of this new normal is without Bree’s physical presence; our “reality show” of a family is definitely in the slow scene or episode.  

The let down is HUGE as every single episode has always been a Sweeps Week type episode from any and all directions.

So instead of working and packing and heading down the shore; we did lots of stuff to keep us busy.  Organizing Bree’s stuff, putting things away from the Funeral, collecting more momentous, etc.

But then Live Like Bree came alive.  Prior to me heading to visit Bree I asked Jake if he wanted to join and get some driving practice in.  As he was in the middle of a heated video game, I was happily surprised with a “yes Dad”.

So off to do some driving and visit Bree.

These visits have been the most heart-wrenching and most joyous moments at the same time.  🍋 & 🍋🩹, ☔️ & 🌈,  🐛 & 🦋.

Admittedly; I was feeling a little sorry for myself.  No Bree, No Shore, No Excitement, No New Memories; in fact it was the “1st last” moment that smacked us in the face during the daily Facebook Memories review.  Friday was the last day of school this time LY.  Our “1st” reminder of the “last” time Bree had a last day of school.

I was in desperate need of some 🍋 🩹, 🌈 and 🦋.  I needed some “Live Like Bree” for the Memory Box of the day.

So I began working on the “blooper” video that couldn’t be included as part of the Video Tribute that we played at Mass.  This became the 🍋 🩹, 🌈 and 🦋 for the day and beyond!  All filmed during Bree’s Hero phase of life.  And she is LIVING every moment in that LIFE.

The 1st cut was watched by Kelly, Jake, Zack Alli, “Miss” Nicole DeFrank Deibler and Sophie and additional video add’s were watched on Saturday by Stacey Diane  D.j. Fox   Kensie, Charlee and Mr. Sean and Miss Chrissy.

Why couldn’t it be included in the Mass video you may ask; well you’ll see for yourself.  And you’ll also see the love, life and joy that Bree brings to all of us and always will.  Enough memories for a lifetime; maybe, maybe not.  But Bree you give us a ginormous Memory Box; taught us how to LIVE no matter what and we love you so so so so much for it!

So Friday June 5th wasn’t what it should have been or what it was supposed to be.  But it certainly was special because our Angel gave us belly laughs full of joy with her 🍋 🩹, 🌈 and 🦋.

P.s. This is still not the full version.  The full version is “too hot for TV” (TU Mr Chappell).  And no need to call DYFS.  God gives Bree and Hero’s like her a free pass 🙂 and their Daddies too😜 

#ThankYouBree

#WeAlwaysBreelieve

#LiveLikeBree

🍋 🩹, 🌈 and 🦋.

Before you go to bed tonight; say thank you to Bree..

Everyone that I know or you know owes Bree a Thank You.

Strangers owe Bree a Thank You.

Enemies owe Bree a Thank You.

Why you may say?

Bree had a little fall over the weekend; with only a minor knee scratch.

While Alli was playing later on; I said “please be careful, we don’t need any more accidents this weekend.”

Bree jumped in and said “she’ll be ok; I took the Bad Luck for everyone”.

Those words struck me instantly and harder than any news the Docs had ever said and they’ve said the worst things imaginable.  

This 9 year old isn’t connecting many dots right now, but she connected that one.

My 1st baby girl has NEVER said “this isn’t fair or why me”?

The girl named after me has NEVER complained about her treatment or how it made her feel or how she lost her hair or ANYTHING!

Did she always like taking medicine or having to drive to Philly; of course not.

BUT NEVER complained about ANYTHING!

NEVER questioned or wondered!

NEVER was mad or upset that she couldn’t go anywhere or do anything like we all have.

This kid took one for the team.  She took one for me.  She took one for you.  She took one for your family.  She took one for your friends.  She took one for strangers.

Bree is 1 in 300 hundred kids a year.  All those kids deserve a Thank You.

A Thank You for taking a piece of bad luck away from you.

A Thank You for taking a piece of bad luck away from your loved ones, friends, distant cousins and strangers.

As you hear the endless punches of “bad luck” in the heart in less than half a year; you get the most horrible and endless pains and thoughts that you could never even imagine. 

No Graduation, No Driving a Car, No Marriage, No Career, No Kids, No Birthdays, No Holidays the same, No Hugs, No Kisses, No I Love You’s.

And while that sucks ass; more recently so much more was taken away from Bree.  So much already. So much so fast. 

No more school.  No more independent showers.  No more dribbling a basketball.  No more bike riding.  No more making her own sandwich.  No more freely walking up stairs. No more freely walking for that matter. No more active play dates with friends. No more hair brushing. No more humming songs. No more coloring.  No more legos.

You don’t need to say sorry.

You don’t need to say anything to try to make us feel better.

You don’t need to try to do something.

But you can say “Thank You Bree”.

Another week down.  One week and a day to go.  At least for now… 

I’m Bree’s mind she’s “done” after this; but unfortunately what’s in Bree’s mind isn’t gonna be “done”.

Ultimately; Bree is doing great! 

Few more side effects continue to pop up with the largest being her platelet counts continue to deplete.  Four transfusions to date and the stoppage of chemo will hopefully help get the count back to normal.  

A tiny fall off of a chair gave her a bruise like I’ve never seen.  It’s amazing how the body reacts when things are out of whack. 

Her spirits continue to be great!  More great visits with friends and family. She has made enough slime to host a Nickelodeon show and she has enough crafts to open up a store.

More questions for the Docs. No answers. Or No answers that we like.

I occasionally feel like they want me to submit but I can’t and I won’t. The master planner and 20 steps ahead guy runs into walls faster and harder than a blind cat without whiskers chasing a fresh batch of cat nip.

Got great advice from friends that have had to deal with this crap. Advice on navigating the docs, dealing with the kids, addressing or attempting to address the emotions and a bunch of other stuff.

Not the club I wanted to join but it certainly is a club that thinks about things and life differently. I didn’t understand. You’ll never understand and I don’t hold it against you. And I promise to never ask you to let me know if you need anything. 

I wouldn’t of had much else to share with you today if it wasn’t for a quote I heard during the Doolittle movie with Bree today. 

I’m a big quote guy.  My own and personal favorite is ‘Fine is not good’.  There’s a significant difference in those words but we’ll come back to that later.

And my newest favorite comes from the movie Glass; ‘Belief in oneself is contagious’. Again; later.

Back to the movie. With one eye on my massive bucket of popcorn and the other on Bree; watching her every move, every sip of soda; every lip lick, every dropped kernel onto the floor, and every smile which warms my heart; I heard it; “Courage is not the absence of fear”. 

I got the chills cause I am right there.

Strong; yes. Scared; hell yes.  Courage and fear. I always thought they were independent. There not. 

I have to be strong. For Bree, Kelly, the kids, our family, work, etc etc etc. 

But at the very same moment; in parallel with that strength; I’m scared out of my mind.  

And the only word I can use to describe the combination of being courageous and scared is “numb”. 

Numb to what is or could or will happen. When I say certain things or use words in a sentence that shouldn’t be put together in describing your 9 year old daughter they eerily roll off of my tongue like a rock star singing a song.  

I looked up the full quote and Franklin Roosevelt actually said ‘Courage is not the absence of fear, but rather the assessment that something else is more important than fear.”

And yes Bree’s strength and life is wayyyyy more important than any fear I may have or be thinking. 

And maybe that’s why I’m numb to it.  Because that fear is enough to break the strongest man and it’s trying hard; but it can’t and it won’t.

Cause the courage and strength that Bree shows everyday is remarkable.  And if she can do it, if she can miss school, if she can not play sports, if she can go from appointment to appointment, if she can give blood, if she can lye still on a table for 30 minutes, if she can swallow a horse pill, if she can deal with emotions that are unspeakable; then I owe it to her to fight right along her side. 

Fight in front of her.  Run into that wall. Full speed. Knowing I’m gonna bang my head.

I’m fighting for her.  I’m fighting for Kelly.  I’m fighting for Alli. I’m fighting for Zack and Jake. I’m fighting for our family.  I’m fighting for her friends. I’m fighting for our friends. 

There’s Only. Won. Outcome.

It’s a scary fight with numbing punches everyday. But the rounds must be limitless. She’s getting up for every one of them. I gotta get up.  I gotta get up for her.  I gotta get up for me. I gotta get up for us.

Alli has been playing “Fight Song” a lot lately and we blared “Champion” a few times in the car on our way to see Rocky Thursday night as tears rolled down inside my cheeks in between my skin and my blood.  

I’m fighting for my Champion. She is not fine or good.  She’s great. I Breelieve.