Normal...

When our son, Braden, was 8 months old, he was playing with one of those shape toy thingies. You put the correct shape in the correct hole. This one was musical and had a big center hole that had a reflective sticker in the bottom of it.

Braden was sitting in the center of our family room floor and dropping throwing the pieces into the center hole in a very aggressive and focused manner. I as watched with my 20+ year educator eye, I began to freak out.

I tried showing him what he was supposed to do, even did it hand-over-hand and he got it!

And then he immediately returned to his repetitive action. I could see that what he was doing was patterned and stimulating behavior.

And I knew.

I made some calls, and some evaluations done and although he wasn't old enough for us to make an official diagnosis, we began treating it like what I believed he had...

autism.

My heart broke. Our son was a child with autism and life as we had dreamed for him was not going to be a reality.  Even with five therapies a week and my husband, me and our sitter working with all day and evening we would not be able to change that fact.

He wasn't going to be able to have a "normal" future.

My worry was that he wouldn't be independent, he would never drive a car, get married, have children...all of the things we all assume will happen as a part of the normal growing up process.

I remember having coffee with a friend who had a son on the spectrum and explaining how I just wanted him to be able to play baseball with his brother in the yard like other children.

I just wanted things to be normal.

Then Braden was diagnosed with cancer and has been fighting for 6.5 years. It turns out the autism has been a blessing because he has no idea what "normal" is...

he doesn't know everyone doesn't feel horrible all the time, he doesn't know everyone doesn't go bald with treatments, he doesn't know everyone doesn't live a large percentage of their lives in hospitals hooked up to tubes and bags of chemo, he doesn't know everyone doesn't get shots all the time...

He thinks all those things ARE normal. And because of that...he is the happiest boy in the entire world even with his crappy circumstances. It's all about perspective.

The biggest benefit is that because of his autism, he doesn't know he is supposed to die. He doesn't have to be afraid because he doesn't even know what cancer is or that he is sick. He doesn't have to be afraid.

I'm grateful for autism now.

GRATEFUL!

And I'm not trying to "train" him out of his autism anymore.

This "different normal" is a gift. And this young man has taught thousands of people about HOPE and FAITH and BRAVERY and FIGHT!

But....my mommy heart still wants the normal things for Braden.

Last night after dinner, we went outside to play basketball...Braden's favorite thing in the entire world!

I noticed some bushes that were very overgrown so I got out the clippers and snuck two feet away from him to clip a few branches. Having a child with autism is like have a two year old all the time, you cannot leave them because you don't know what they will get into or where they will disappear to. There is no "me" time because you are always on watch and that makes things like simply trimming bushes two feet away from him difficult to do.

I could hear the basketball bouncing so I knew we were good...for a couple of minutes anyway.

Then I heard two basketballs...his brother, Zach who is 11, joined him.

Then I heard, "Braden, let's play baseball!"

Rats...I was going to have to stop trimming so I could help Braden play baseball.

So I hurried, I clipped fast and furiously so I could get as much done as possible while they got the wiffle balls and bats out.

And then it happened...the sound of Zach pitching and Braden hitting! Zach was telling Braden "Good hit Braden" and Braden was giggling.

I came around the corner and this is what I saw...

I gasped...took a picture and just stood and smiled.

It was happening....the dream I told my friend I wanted and was so sad we wouldn't get.

My boys playing baseball in the yard by themselves.

Holy smokes!!

As I watched smiling with tears running down my cheeks, they completely ignored me and switched places.

WHAT?

And they were sharing and taking turns voluntarily?

I didn't want anyone to pinch me because if I was asleep I did NOT want to be awakened.

And they kept playing for a long time!

Aren't they sweet and cute? (proud momma here)

I was able to go back to trimming the bushes, collecting the branches, and putting them in lawn sacks.

And that friends...has never happened in 9.5 years!

I went in the garage to put away the clippers and heard a loud scream and crying.

I freaked out!

Braden is only 66 days out of a bone marrow transplant. Zach was perfectly matched his bone marrow donor.

I SPRINTED outside and saw Braden crouched down on the drive way grabbing his eye. Zach was standing beside him trying to comfort him and crying too explaining that he had accidentally hit the wiffle ball into Braden's eye.

It left a mark.

A big, beautiful, red, swollen mark...

...that was an injury from playing baseball with his brother.

It wasn't from cancer.

It wasn't from the autism and not being safely supervised.

It was from playing baseball like every other kid.

It was "normal".

NORMAL!

That crazy red, swollen eye was a gift.

And they kept playing baseball. And  his eye was all better in about 10 minutes.

My dream came true! 

Maybe...just maybe...nothing is impossible...

HOPE!

"Jenny"...

I have this friend...

I really do have more than one friend (giving myself an encouraging high five right now).  And each and every one of them has a heart of gold. They are selfless and wonderful and amazing, or they wouldn't be my friends.

I have zero tolerance for "Mama Drama" females and I quickly walk away and wish people well when that is their specialty. Ain't nobody got time for that!

Occasionally I like to write about my friends because they are so special, and today is one of those days.

Now, each of my friends is special for a lot of reasons, But there's this one....and she will want to remain anonymous because she does NOT like to have any attention called to her in any shape or form.

So to preserve her anonymity, I'll come up with a pseudonym for her.  Now let's see....

Starlight Moonbeam?

Nah.

Bat Girl?

Wonder Woman?

Hmmmm...closer....

She-Ra Princess of Power?

I kinda like that one...

Wait! Eureka!

How about....Jenny?

Yup, that's a great name because it rhymes with many (and she does many things for many people) and it rhymes with penny (because she's raised a bunch of them for kids with cancer) AND it rhymes with Lenny...

(that one just made me giggle a little when I was running through rhyming words in my head)

So..."Jenny"... (as we will call her)...is pretty awesome!

She's smart, kind, giving, funny, silly, and strong.

She won't agree to any of those descriptors...because she is very, and I mean VERY humble.

Jenny is one of those people who helps others just because she simply wants to help others and make a difference. It's really that simple.

I "met" Jenny about 6 years ago when someone put together a race for Braden to raise money for his medical costs. She called me out of the blue and offered to put together a silent auction at the race. I remember vividly saying that we would be honored but it was so much work...was she sure?

She said of course and then put together a silent auction that raised over $10,000! I had never met her...she just heard about Braden and wanted to help! I was shocked and amazed.

Along the way, we became friends and I am honored to call her one of my besties. She's the kind of person that makes you a better person just because she's your friend!

(Maybe I should have gone with She-Ra Princess of Power instead)...

...hmmmmm....

Anyway, Jenny was a huge part of starting our charity, Braden's Hope For Childhood Cancer, and has turned dreams into reality through organizing, managing, initiating, acting, and always making a difference for our children with cancer.

Just because she's a good person and wants to help! She doesn't have a child with cancer. She doesn't get paid to do this. She just wants to help our kids and she spend more hours than I can even begin to count doing it.

She's completely selfless. So selfless I stand in awe!

Simply put, she inspires me to be a better person.

I think out of all of the traits she possesses, the one I admire and respect the most is her humility.

You can give Jenny a pat on the back for about a full 2 seconds...and then you have to stop it! She really doesn't want any thanks, she is helping from her heart.

And I mean completely....totally...and selflessly...helping from her heart.

So because every time I try to thank her in person, she smiles and changes the subject, I'm ratting her out in this blog.

BOOM!! :)  That'll teach her!  LOL!!

People like that earn the greatest gift I can give them...my respect. I don't give that away readily or easily.  I totally respect Jenny....or whatever her real name is. ;)

Jenny is one of those people you just want to be around because....well...she is just that awesome!

So if you read this "Jenny"...thank you for letting me be your friend!

I love you!

Cheers!

Typical East Coast Philly Pholks....

We all know the stereotype of "East Coasters"... brash, blunt, loud...

...you know...the East Coast "attitude" as portrayed on The Desperate Housewives of New Jersey and Jersey Shore.

They are rough and tough and "taulk about drinking caufee" all the time.

I'm a midwesterner...born and raised. I'm not a city girl. I grew up in the country with wide open spaces, beautiful sunsets, horses, and at least half mile before reaching another neighbor.

We've been traveling back and forth between Kansas City and Philly for over 5 years for our son's cancer treatment. He's nine now and we are just wrapping up a 2 month long stay in the city.

I'm used to everyone making eye contact, smiling, and saying hello to everyone we walk past...at the grocery store, mall, walking in the neighborhood, everywhere.

It's not like that in the city...

(city folks are laughing out loud right now in acknowledgment)

I'm a simple country mouse...living the life of a city mouse...

...with a 9 year old who is bald and wears a big pink mask to protect him from germs after a bone marrow transplant that has left him very immunosuppressed. It's quite a sight and attracts the stares of even seasoned city folks.

But while we've been here, we have learned a lot about you East Coasters, specifically the Philly Pholks with their bad ass, rough and tumble reputation.

Yes, East Coasters are direct...and blunt, (my people!! truly the yin to my yang!)

....but they are also kind...caring...giving...and...

(they'll really dislike this word)...

SWEET.

Let me tell you about a few things these Easter Coasters have done while we have been here.

There was one family who drove for about 2.5 hours to the hospital to surprise us with two huge baskets of goodies for us as a random act of kindness in celebration of a friend we have in common who would have been 41 that day. I was speechless.

Everyone at the hospital was delightful and the nurses (and some of the doctors) played basketball with Braden using the hoop we hung on his door. The child life specialist played with Braden each and every day and she even made him an official CHOP "Dr. Braden" badge. When he was dismissed, they gave him a stethoscope.

Left to right, our Neuroblastoma APN, Jennifer, Braden, our MDS APN Anne, and Dr. Olson our transplant doctor.

Rebecca...the child life specialist who played with Braden every day...we LOVE her!

Dr. Braden cleaning the baby's tubies.

When we were dismissed from the hospital and had to get a hotel to stay in for nearly a month several local foundations got together and paid for all of it. Each foundation paid for a week of our lodging and that was well over $4,000. I didn't ask any of them, one foundation called the hospital and offered and then asked a fellow foundation to join in. Unimaginable!

Ali and Joe McDonough from the Andrew McDonough B+ Foundation

Local people have reached out to bring things to us that we can't have delivered, like Braden's special yogurt and crackers. A sweet young lady even offered to drive 40 minutes one way to bring us fans when the air conditioning in the hotel went out. And one of my friend's best friends worked at the hospital and she stopped in to bring hugs, best present ever!

And a visit from my nephew and niece so I could give them hugs and meet my new baby great nephew, Carson! They've been living in Delaware for about a year and I have missed them terribly!! Isn't Carson BEAUTIFUL?? I know I'm biased...but those cheeks!!

The staff at the hotel we are staying in has been lovely to us. One of the housekeeping ladies we adore saw that I liked hot tea so she brought a beautiful tin of Chinese hot tea for me. Braden always blows her kisses and says hello to all of the folks working each time we go through the door. And they always ask him how he is doing.

It has been shocking how many people we pass in the streets stare (that's the norm) and then smile and say "Hi" to the bald little boy (which is NOT the norm)

Just yesterday, one of the men working at a sidewalk cafe outside Comcast Center was talking to Braden from across a fountain and asked him if he would like a fresh cinnamon roll.  And the police officers patrolling the streets always stop in their steps to say hello to Braden. (I thought they were supposed to be a especially tough bunch). Hmmmm....

The guys running the backhoe outside of the hotel digging some sort of trench for new pipes stop and say hello so they can talk "backhoe stuff" with Braden every time we go past them each day. Kind construction guys? That doesn't seem very East Coast.

A Kansas City friend called a friend who works with the 76'ers and they invited Braden out to the practice facility to play basketball. That's his love...his favorite thing to do in the entire world. And he got to shoot hoops with Greg Foster and some other coaches, he got to sit in the head coach's desk chair. Braden even played a game of "base-ketball". They made it up using one of the pads they use to block in practice and a basketball. It was awesome!

base-etball

We are now officially the biggest Sixers fans in history, FOREVER! 

Then one of the sweetest ladies I have ever met, Mary, even drove us back to the hotel so we didn't have to get another germy cab. WOW!

There is no way to express how excited Braden was about that hour spent with the Sixers!! Truly a dream beyond our wildest imagination!

On our walk yesterday, we saw a HUGE ladder firetruck outside the Courthouse near Logan Square and Braden was flipping out. We stopped to take a picture and the fireman who was in the back part of the truck near the ladder asked if he wanted to get inside the firetruck.

I quickly threw his mask on and they lifted him up to the main cab...and he got to honk the big horn. Yet another group that was not ranking so high on the "tough guy" scale.

As we walked away, we passed a group of homeless people who are often outside the court house. We pass them every day.  Seeing homeless people in Philly is, sadly, not unusual. The city is filled with people on the streets trying to survive. We generally just try to walk past but Braden is a social dude and always wants to say hello.

We walked past three men sitting near each other under a tree and the man in the middle yelled, "HEY!! SHORTY!!! HELLO!"  We slowed, waved, smiled, said hello, and kept walking...

and he then yelled,

"GOD BLESS YOU LITTLE MAN!"

Seriously?

A homeless man yelling "God bless you little man" to a bald 9 year old.

I cried...right there on the sidewalk in front of all of them and only narrowly managed to eek out the words, "God bless you!"

You Philly Pholks aren't nearly as tough and hardened as you want your reputation to be,

and I'm here to rat you out.

You are (take a deep breath and brace yourselves)...

nice.

In about 48 hours we are leaving Philly and heading back home after 2 months of city life.  Leaving with a little boy who feels well and has baby sprouts of hair and, to date, no sign of cancer.

Home to our friends who have been madly supportive, kind, loving and amazing for the 6.5 years we have been battling. Friends who were kind enough to send flowers to brighten our day, a box of Easter goodies for Braden (and me) and a Mother's Day package filled with cards and a big surprise, countless texts, posts, and messages. They have even sent wine and vodka. BOOM BABY! Man I am one blessed lady to have such amazing friends! :)

Heading home to daddy, big brother Zach (who donated his bone marrow to try to save his little brother),

our beta fish and kitty.

Home to our own beds, courtesy of a wonderful Kansas City businessman who is flying us home on his corporate jet because Braden cannot fly on a commercial airline right now due to the immunosuppression. Unreal!

Home...the most beautiful four letter word in the universe.

But we are leaving a place that feels a lot like home.

Thank you Philly! We will be back. In the meantime, we will miss you.

And we thank you for being so....

nice.

(get used to it...I'm going to keep using that four letter word to describe all of you "bad ass" Philly people) :)

You are beautiful!

BugZilla...

The day started with the housekeeping lady from the hotel we are staying in after Braden's bone marrow transplant telling me that she always requests to clean our room. She said she told her boss, that lady is SO clean!

I smiled with pride.

Yay me.

I do attack every surface daily with Chlorox wipes, it's important to keep things germ free because of Braden's extremely compromised immune system.

Then I got a call from a friend in the Philly area asking me if Braden would like to do a painting that could help raise funds for children with cancer.  I said we would love it and we set it up for the supplies to be delivered at 10:30 the next morning.

We've gotten into a really bad sleep pattern while in Philly for 2 months so I knew I would need to have both of us shower the night before so we would have a head start the next morning. It takes about 2 hours to get Braden going with his meds, fluids, and calorie intake.

Braden was busy with an App on his I-Pad so I decided to shower first. That is a break from our usual routine.

I warmed the water and got into the shower, shut the shower curtain and noticed a HUGE brown spot on the curtain out of the corner of my eye.

I focused my eyes on it and noticed it was moving...it's antennae...

and it was staring at me.

I think it actually said, "Boo!"

I'm a country girl. I grew up where we had rattlesnakes outside our door, under our cars, around the foundation of our house, in our barn...everywhere and as result I know that when you see a venomous enemy, you freeze and slowly back away.

You do not scream.

But I do NOT like bugs...had it been a rattlesnake, I would have been more composed.

I didn't scream, but I did inch the shower curtain back slowly...it started to move so I quickly just jumped through the small opening, over the toilet that was blocking my way...

and ran for my life to the other room.

I didn't even hesitate, I called the front desk of the hotel and explained there was a cockroach in my shower that was roughly the size of my entire hand and I was too chicken to kill it. I needed help...a brave soul who could kill it for me. The thought of the crunch that was going to happen when it was killed made me ill.

Seamus was working at the front desk and was the lucky man to answer my phone call. We've been here several weeks so I know everyone, and they know us. Seamus tried not to laugh and said he would get help "right away".

I explained to Seamus that it was roughly the size of my head and that it would be great if they could hurry.

Audible giggle...thanks Seamus.

I knew when they got to our room and saw it, they would agree that it was about 3 foot tall and would likely call animal control to retrieve it.

They wouldn't be giggling then.

I waited....

...and waited...

...and waited.

Finally, a knock at the door.

It was a HUGE man...seriously big, big dude.

I figured this would be a fair fight now...he and BugZilla would be eye to eye and my money was on the brave big dude.

I couldn't even go back in the bathroom so I stood in the doorway and pointed to which side of the shower curtain BugZilla had taken up residence.

He wasn't afraid (pssshhhhh) and went in the bathroom...

and I did the "ew ew ew ew" dance out of his way and against the hallway wall.

I wanted to be supportive...

and I wanted to be as far away as possible.

The Big Dude smacked the shower curtain hard and I could see BugZilla leap with the agility of SpiderMan to the opposite side of the shower wall.

The Big Dude got his first glimpse of BugZilla and JUMPED back and threw his hands up.

I resisted the urge to say, "I told you he was HUGE!"...

...barely.  It was SO right on the tip of my tongue.

He turned around and looked at me with wide eyes and said, "I will be right back, I need to get something."

Aha...see...even you, Mr. Big Dude, have to get something to kill it with because it's 5 foot tall and has muscles like the Incredible Hulk.

 See, I'm NOT such a wimp.

I said, "So you are going to piss him off and then leave me alone with him?"

He smiled and we both giggled.

But I wasn't kidding...

I was worried.

So I waited for him to come back with bug killing tools.

And waited...

....and waited...

....and waited.

Just as I was sure I was going to need to call down again and have them evacuate the hotel, I finally heard a knocked at the door.

I told him he didn't need to EVER knock to get back in....just come on in...

And I warned him that I was pretty sure BugZilla was planning his attack...

and that I feared for his life.

I've watched movies...

I know how it works. You see an intruder,  leave to get a knife and boom....the enemy has readied an AK-47.

But Mr. Big Dude was smart and had brought bug killer tools...

...two small boxes.

Seriously?

I said, "so your plan is to capture and relocate him?"

He laughed,

but my fear for his life was genuine.

This was a bad idea. This wasn't enough of an arsenal to take on BugZilla.

I told him my hairspray was right beside the sink if he wanted to stun him before he launched his assault.

That idea had been suggested by a wise friend on Facebook when I posted a picture of BugZilla...

(I was afraid we wouldn't survive and I wanted my friends to know what had killed us)

Mr. Big Dude walked into the bathroom but he wasn't so bold this time. He was VERY cautious...but clearly he was a Big Dude and couldn't appear to be scared out of his damn mind while protecting a mother and child from an armed 6 foot tall cockroach with wings, antennae to use like swords, and with legs hairier than mine after 2 days without shaving.

(that's pretty hairy)

I moved to the wall and assumed my supportive, yet defensive position. The door was right next to me and I could make a break for it.

Braden was still watching his movie and although I love him with every fiber of my being...if BugZilla came after us, he was on his own.

He's 9...maybe BugZilla wouldn't even notice him given that he was three times Braden's size. Perhaps, he would be viewed as a mere crumb compared to hefty momma and Mr. Big Dude.

At least that's what I hoped.

Mr. Big Dude began trying to kill BugZilla by swinging his boxes...but BugZilla countered with a direct attack and lunged after him.

Mr. Big Dude jumped back, but to his credit he got right back in there and continued fighting the good fight.

I was laughing so hard I was crying...but I was being encouraging saying, "Don't give up...you can do it...we have to kill it because it is going to get US if you don't!"

He was laughing too...but he was scared and jumping around like a little girl. Even though that was 1,000 times braver than I was at that moment.

He said, "You have a fighter here for sure!"

As his position was pushed backed further toward the bathroom door, I left my defensive/supportive position and moved to the other room...it was getting too close to my space for comfort.

I finally heard a flush.

I walked back to my hallway stand and said, "Are you sure it was dead? If you flushed it and it comes out of that toilet, I am going to lose my damn mind!"

He laughed and said that it would be on him if it did.

I looked directly in his eyes and in a very slow voice said,

"If it comes back out of the toilet, I will hunt you down and kick your ass!"

We laughed.

But I was not kidding.

He called housekeeping...the shower was cleaned and the bathmat replaced because he had apparently squished it on the bathmat.

I posted that it was dead and about the squishing and my "helpful" friends told me you never squish a cockroach because they have thousands of eggs in their stomachs and the eggs spread from the shoe across the floor and then the eggs hatch everywhere.

Other helpful friends told me to be sure to watch carefully because BugZilla may have brought friends with him to the party.

Yea...That'll help me sleep.

Not.

I posted that I had tipped Mr. Big Dude $5 for rescuing me and one of my friends responded with a congratulatory remark....

She noted that I had now officially ordered my first contract hit.

That one made me laugh out loud.

And it makes me the "BugFather....

wait "BugMother...of Philadelphia".

Back off bugs....

I'm out of five dollar bills but I have a whole roll of quarters for the laundry machines.

I will order more hits should any of you wise guys get any ideas.

Let it go...

Braden and I have been 1,000 miles from home for about two months now while he goes through his bone marrow transplant.

When we left, it was still a gray, dull, and bitterly cold winter. Now it's a colorful, warm, and beautiful spring!

Our days consist of long walks that last about 2 hours each day (when it's not rainy or cold) in which we have found many little parks, watched spring flowers bloom, collected rocks, watched water fountains, chased white butterflies, talked to pigeons, watched robins pecking worms out of the dirt, talked to the police officers, played basketball in our room, spoken with each new neighbor from our room window as they stood on their balcony below us, chasing down garbage trucks, firetrucks, and ambulances...and various other awesome things.

You know...the important stuff!

I have largely unplugged from the WIFI and cell phone world.

I thought giving that up would be like losing a limb...

and it sort of was. :)

But Braden needs me right now and I have one job to do...to get him well....

...and get us HOME with the people we love!

And "getting him well" doesn't just mean making sure he gets his meds, electrolytes, 2,000 calories, and 1,700 ml of fluids each and every day...it means keeping him happy and active while we are in isolation and he can't be around people.

It's hard to be 1,000 miles away from Brian, Zach, and my friends.

FaceTime is great, but Hugs are much better!

I have wine :) but....

Braden just has me.

So, I have to take my job seriously,

and not so seriously.

We take detours every single day.  We learned to take detours long ago... http://deliecehofen.blogspot.com/2013_01_07_archive.html

But somehow...this time so far away from home and just with Braden is different than simply taking detours.

I've been granted a rare opportunity to unplug from the hustle and bustle...

I'm not a minion to my phone and WIFI.

I am grateful for that technological world because it allows me to keep in contact with my friends and that ROCKS!

And sure....I do that from home as well, but this "time" is different.

At home, there is the constant rush of everyday life. Each day I have my checklist of things that must get done and tasks I need to finish.

I don't have that right now. My friends are taking care of things at home for me. How blessed am I?!

It did take me a few days to chill out, stop micromanaging, and just "let it go".

(I'm an admitted control freak...at least I admit that and own that) :)

What a wondrous gift this "down time" has been. It has allowed me to be on butterfly patrol, climb rocks, giggle, play, and enjoy time with Braden without feeling the constant need to hurry it up so I can "get things done".

What I'm realizing is that even though we take time to detour, we NEVER get time that has no pressure of the "to do" list and the hustle and bustle...

the constant "gotta do"....

...we don't get to ever let it go.

(and there is no cute snowman implied in that phrase).

I don't suppose it will ever be like the days of Beaver Cleaver and Aunt Bee from the Andy Griffith Show with hats, dresses, and chats over tea being the event of the day.  I'm certain June had a lot of things on her "to do list" with the cleaning and cooking and ironing...

but things used to be different.

I've only had my iPhone for about 3 years, I fervently waited because I didn't want to be accessible 24/7. I know myself too well and I can easily get consumed by that accessibility...

and others being accessible to me.

I planned for that consumption so I always have my phone ringer shut off. I don't have any notifications set for my phone. The only way I know if someone has called, texted, messaged, emailed, Facebooked, or Tweeted is if I pick my phone up and check.

BUT...I feel this obligation to be accessible. I have this need to check continually in the event someone needs something right away.

I didn't used to be that way...growing up I was only accessible during passing periods in the school hallways and occasionally on the weekends via our phone which was in the kitchen where my mom could hear everything I was saying.

There was no phone in my room,

and no TV in my room either, just the one in the living room with two channels that the rabbit ears on the console TV could pick up.

GASP!

And while I used to moan and groan about all of that (constantly), I now yearn for that "unplugged" time to just be quiet and not have to worry about what has happened and who I didn't get back to while I was unplugged.

And being stressed about how I need to stop being unplugged because things are building up as I'm quiet,

and then worrying about how miserable it's going to be to catch up once I plug back in...

Can I get an AMEN??

When I was working and was at a meeting all day, I used to then spend hours after work catching up on my emails so others would get the answers they needed right away.

We are simply too "accessible"...

ALL the time!

We don't have down time, we simply can't "let it go" anymore. There's an unspoken expectation that we will answer that work email within a few minutes and if we don't, people are upset or disappointed.

That's really not a very healthy way to live but we are consumed by this constant accessibility, we have simply given in to that way of life...it's now the norm.

I am very guilty of perpetuating this new norm. I have a huge need to be responsive, reliable, and accessible,

but this time in Philly has allowed me to let it go.

And THAT is a pretty big gift.

I'm lonely...I miss my 11 year old, husband, kitty, and my friends VERY much but...

there's never going to be another time like this that the biggest "to do" on the list for the day is collect rocks and watch the construction of a new building with my bald 9 year old.

I need to figure out how to "let it go" once we get home...

maybe I can schedule a "let it go" appointment in my electronic planner,

ask SIRI to create a reminder an hour before,

and set my meeting reminder for 5 minutes before it's time to relax.

Since I don't want to turn my notifications on, maybe I'll just stick with the wine thing.

Whatever it takes, I think we ALL need to find a way to let it go more often!

The Cheetah, The Elephant, and Prom...

Last night I couldn't sleep...worried about the results of the bone marrow test that will show if Braden's cancer is gone after his transplant. If it's not, we are in big trouble...so it's one of those things that will keep you up late at night.

I was watching the Animal Planet (seriously) and a show about African Cats came on, it was narrated by Samuel Jackson.

(every time I hear his voice is snicker because all I can think of is him narrating the book "Go The "F" To Sleep"...)  Giggling now...

The baby cubs of the lionesses and the momma cheetah were SO adorable. I just wanted to snuggle them (perhaps not the best idea but they were just so huggable)  :)

The cheetah cubs are playing in the tall grass when two male cheetah brothers approached. Samuel warned us that male cheetahs often will kill small cubs.  I wanted to turn it off, but I kept watching...hoping they would be okay.

The momma defended her babies but they got around her and started attacking her babies.

I was literally standing in front of the television, pointing my finger and telling the male cheetahs to stop it right now...and telling the babies to run..hide...and where was momma??

It looked like it was over for the babies when a HUGE momma elephant came stomping in, swinging her trunk and bellowing at the brother cheetahs to scare them away.

Now I was clapping, crying, and yelling, "Oh you GO Momma Elephant!! Kick their asses!"

After the cheetahs ran for their lives, the elephant just walked away and the babies were safe and sound...and so was the momma.

Whew...

I started thinking about how we should all be more like the momma elephant...willing to step in and help someone other than our family and friends just because they needed our assistance.

Then I remembered the Prom party that was going on when we checked into a hotel the day Braden was dismissed from the hospital's bone marrow transplant unit.  Brian was bringing the luggage into the room and he laughed and said there was a HUGE prom party in the room next to us, so it might be a long night.

We had heard them...I just didn't know it was high school kids and a prom party.

By about 8:30, it was in full swing and crazy loud. Grandpa Zach (our 11 year old) was quite perturbed and wanted to go next door and tell them to be more respectful and be quiet so people could "think".

I laughed and wished I could record it and play it for him in about 6 years for his reflection purposes. :)

They weren't bad, just loud and silly and then about 10:00, they all disappeared. Apparently, going to the actual prom itself.

I braced myself for their return and the "After Prom" party that was likely coming later that night until the wee hours of the morning.

About midnight, I heard two loud voices in the hallway and thought, "here we go..."

The boy was yelling, "Why the "F" are you crying!! QUIT crying" and the girl was sobbing yelling that he had ruined her prom night. After a long argument in the hallway, they went into the room and continued the yelling there.

Ah...young love (bats eyelashes)

I was bracing the the rest of the gang to join them and trying to go to sleep but then the girl yelled, "Why did you hit me so hard?"

That got my attention.

I began listening fairly intently (although I didn't need to try to hear them because every word they were saying was crystal clear and extremely loud). It was a 50-50 yell fest but the boy was very ugly and demeaning in how he was treating the girl. And she was crying profusely in between her verbal assaults, but she was dishing out as well. That went on for at least 30-45 minutes and I just kept listening thinking if I heard him lay hand on her or if she sounded like she was being hurt, I was going over.

They continued and at one point I heard her say "You ruined my sex life!" to which he replied "I ruined YOUR sex life?"

I shuddered and thought...

 "T.....M.....I.....Please stop!!!!"

Then I heard her say, "ouch!"

That's all it took. I sprang out of bed and told Brian was was going next door because I was worried the guy was hitting his girlfriend and I was out the door before Brian could even get out of bed.

All I could think was that if this was MY daughter, what would I want someone to do.

And part of me wanted to get her parents on the phone so I could yell at them and ask them what the hell they were thinking renting a room for the kids to have a pre-prom party in and for her and her boyfriend to spend the night.   Maybe Zach gets that whole "disapproving grandpa attitude from someone...gulp!"

I knocked (loudly) on the door. It immediately went silent inside their room. Then footsteps...bumping into the door...whispers of "it's some lady in pajamas"...and finally the door opened.

The teeny tiny teenage girl stood there in her teenier tinier dress with dried mascara that had run down her cheeks. She said, "yes?"

She looked fine..no red marks on her (and trust me, I could see most of her skin), her hair wasn't messed up and other than the mascara mess she looked fine, and that bold girl who had been screaming at her boyfriend instantly became a little girl who was scared she was in trouble.

The dude was no where to be seen but I knew he was there, hiding so I wouldn't know he was there. Apparently he has not been paying attention in school and he didn't know that sound (especially YELLING) travels. LOL!

I asked her if she was okay and she looked at me with eyes that said, "why in the world would you ask THAT" and said of course she was. I was relieved, but I wanted the dude to know that I knew exactly what was going on in the event he decided to do anything after I left.

I realized the guy wasn't going to come to the door (chicken) so I very loudly said, "I can hear EVERYTHING! I heard you asking him why he hit you so hard, I heard you say ouch. I hear him yelling at you, calling you horrible names (I told her exactly what he had called her), and both of you throwing the f-bomb at each other every other word.  And I came over because I wanted to make sure you were okay and not being hurt."

She assured me that she was fine and not hurt and apologized profusely for being so loud.  I said I wanted to see the dude and she just froze in the doorway. It was obvious he wasn't coming into the light (because again he was NOT there...duh me) so I said, "You need to cool it buddy! You need to stop now because I will come back!"

Total silence.

She apologized again and I walked back to our room. Things were much quieter but I could still hear the "talking" and I stayed up until VERY early in the morning to make sure that she was okay.

The next day, I was mad at myself for not doing more. I had been like Ms. Elephant. I simply had broken up the fight.

I had not changed the world. I had not educated anyone, I had not helped them resolve whatever they were fighting about, I had not taught them a single thing, I hadn't told the girl to stay the hell away from that guy because he was a jerk and she should NEVER allow anyone to treat her like that...I had merely broken up the argument for that night and made it known that "mom" was listening and would be back if they did it again.

Just like I do with my own sons when they argue over whose turn it is on the PlayStation.

I was disappointed with myself for not doing more.

But...I did a little.

Just like Ms. Elephant...I did something to change the path the rest of the evening was heading down.

What a different world it would be if we all did a little.  If we didn't just walk past things and we stepped up to offer a hand to someone who was hurting. I didn't do anything huge and awesome...but I was able to settle with my conscience because I had done something.

I'm blessed to be surrounded by people who do something all the time. Friends who just step up to help because it's the right thing to do. And I realized that this is bey design. I found that "post 40", I have chosen to surround myself with those types of people and let the others who are not like Momma Elephant go in their own direction, without me.

I'm fortunate to be a part of an entire herd of "Ms. Elephants".

Be like Ms. Elephant and live among a herd of them.

I promise your life will be blessed as a result!

And I have now added "snuggle a baby tiger or cheetah" to my bucket list.

Hate...

Hate is the only four letter word I refuse to use.

Ever.

Others flow, far to freely, on too many occasions.

So why draw the line at the word hate?  What's so bad about that particular word?

Today, Braden had a surgical procedure to remove his Hickman central line...it is a line that ran through his veins to deliver his chemotherapy and then drugs to counteract the damage that the chemo did to his body.

It is a rather medieval looking device with long tubes sticking out of his chest that have caps on them to connect to the tubes from the drugs so they can be pumped through his body.

It's nice that it's gone..it means he is getting better and no longer needs it. We may actually break out of the bone marrow transplant unit at the end of the week,

a full month earlier than they predicted his earliest dismissal day from the hospital would happen.

TAKE THAT cANCER!

They also did a bone marrow aspirate to check his bone marrow for any signs of remaining MDS cells, that's the pre-leukemia Braden has that was caused by the treatments to save his life from relapsing neuroblastoma.

His body is now fueled by his 11 year old brother's donated bone marrow cells, and he is kicking butt and taking names with this bone marrow transplant,

But now it gets real. Now we wait for two days to find out if the treatment he just went through has killed the cancer cells....

...and my stomach is in knots because if it's not gone...

...I can't even type it,

Let alone think it.

It simply has to be gone.

Braden has been fighting cancer for 6.5 years...

and he's 9 years old.

He has no idea what life is like when you are not in continual treatment. He has autism and doesn't even know he has cancer, so he just fights...

and lives life to the fullest every day with joy and love.

As he was still in a deep sleep from sedation, he had one single tear dripping from his eye and it broke my heart in a million pieces.

Braden never cries about his cancer, he hasn't cried ONCE during his bone marrow transplant...to the contrary...

he has been shooting basketball hoops, playing, and painting beautiful pictures.

But it does wear on him....and that tear showed it.

I often hear people tell me how they hate cancer because of what it has done to them or to someone they love.

And this tear completely ripped my heart out. Just another time cancer was hurting my baby.

But I will never say that I hate cancer.

The reason is simple.

Hate comes from an ugly, evil place.

Hate is the reason that a grandfather, his 14 year old grandson, and a woman were just shot and killed in my hometown.

A fourteen year old beautiful boy who had his entire life ahead of him. A grandfather who was lovingly taking him to try out to be a part of a singing group, a dream of his. A woman who was making her weekly visit to her mother at a retirement village.

Gunned down randomly by a crazy man yelling "Heil Hitler" as they placed him in the police car.

You see, they were killed at two different Jewish locations, likely because he believed they were Jewish.

THAT is hate...

THAT is evil...

And that is simply horrific...

and as much as I actively dislike what cancer has done to our son and our family, I simply REFUSE to allow this disease to make me hate.

I refuse allow cancer to conquer me.

I refuse to allow it to make me hate.

cANCER, evil and hatred will never receive my soul.

As much as I would have chosen another path for our son, it is the path he has had to walk. I would give my life to change that for him, but I cannot.

cANCER has blessed us in so many ways. We have been shown how much love, support, compassion and true selflessness is in the world. People have shown us all of that with open arms. As they did when the community showed up to welcome Zach home after he arrived from donating his bone marrow to Braden to try to save his life.

THAT is love.

THAT is goodness.

So in a very twisted turn of events, cANCER has brought beauty and grace to our lives by showing us exactly how much more good there is in the world than evil.

My heart breaks because of our son's one single tear dripping from his eye.

I allow myself to feel sadness and fear because I am human,

but I get back up and I fight every single day because I refuse to allow hate in my life in any way shape or form.

Hate is the worst four letter word in the world because it consumes souls and allows evil to reign and spread.

We conquer hatred through loving acts and words, and through faith.

God has Braden in His hands and I trust Him to care for him and that far surpasses hatred and evil.

"Lord, make me an instrument of thy peace. Where there is hatred, let me sow love."

--Francis of Assisi

Amen.