My Punkins and Their Pumpkins....

We made our annual pilgrimage to the Pumpkin Patch this week. I chose to take them after school was over so all the field trip groups were gone and it would be less busy than on the weekend.

It was the perfect day, no crowd, cool temperatures, and tons of fun.

We rode the hay ride out to the pumpkin patch to pick our pumpkins and our boys chose some "unique" specimens.

Now when I was a kid, we had one pumpkin and it was perfect. It was usually pretty large and always perfectly round with no damage on the outside. Then my brother would carve it on Halloween and mom would put a candle inside of it. It was the classic Halloween scene.

Well, our boys didn't pick perfect pumpkins. They were far from perfect.  They were more like pumpkins that would have been characters in the movie "The Breakfast Club" or pumpkins that would have been found on the Island of Misfits in the movie "Rudolph The Red Nose Reindeer".

Braden found his first one immediately and he fell in love. It was a "bumpy pumpkin". (they are his favorite kind)

Those bumpy pumpkins are so ugly and this one was lopsided but he loved it so I picked it up and the backside was all scarred up and dented.

I showed the bad side to him but he still loved it. I was about to talk him out of it by telling him that it was yucky and ugly when I stopped myself short because I realized something more important than that dented and scarred ugly pumpkin.

That pumpkin is a lot like Braden. He is perfect and beautiful but when you take his shirt off you see  many scars from 8 years of cancer treatments, multiple surgeries, 4 central lines, bone marrow aspirates, stem cell harvests, and tattoos which were markers from his radiation treatments. 

Those scars tell Braden's story. 

And apparently this pumpkin has a story too.

So we brought it home because it is perfectly imperfect. The fact that he loved it regardless of it's lack of perfection nearly had me in tears.  

There is nothing more beautiful than acceptance and I love his pure and kind heart that looks past imperfections to see beauty.

His second pumpkin, yes I told him only one pumpkin and then I totally caved, was one that he said looked just like a jack o'lantern pumpkin. The problem is that the top was split open a little bit.

I opened my mouth to tell him that it wouldn't last very long and would get yucky soon and we would have to throw it away, but then I stopped.

Again, this is like Braden's story. The doctors have told us more times than we can count that he wasn't going to live and we needed to spend our time well. We chose to fight and to make memories with the time that we were given.

So we have one pumpkin that isn't going to last as long but until then, it's going to be on the front porch with the others proudly displayed.

We walked back through the patch to find Zach. He's a 7th grader and apparently there is an unwritten law that says that you cannot be seen with your mother and little brother in a pumpkin patch so he was far.....far away searching for his pumpkin.

I had not been given the memo about pumpkin patch etiquette prior to the pumpkin patch visit. (I would have still made him come with us though) ;) 

Something about it totally throwing off his street cred??

We found Zach, with the hood of his jacket covering his face so no one would recognize him.

He had two small pumpkins in his hands.

 Yes, once again I said only one pumpkin and then I totally caved. But I was really excited because they looked pretty perfect to me.

I caved because he explained that he found each of them hidden under large pumpkin leaves where no one could find them. He said they wouldn't be seen and no one would choose them so he wanted to bring them home because they should be noticed.

I melted. 

And nearly cried again.

These pumpkins are just like Zach.  Quietly hidden away hoping to be noticed for how special he really is. He's never vocal about it but being the sibling of a kid with cancer is a tough row to hoe. Nearly all the attention is on the child with cancer because you are fighting to save his life. 

It's not fair and we do try to even it out and our friends help try to even it out, but it's the truth. Zach has been hidden just like these pumpkins.

I love this boy's heart and compassion. That's my favorite thing about him.

I thought we had all the orange things we needed but at the checkout stand, Zach found a gourd and wanted to get a small one because he said it was tradition. 

I do not recall this tradition.

We bought the gourd.

That makes 5 pumpkins...when we went for one.

I'm weak.

When we put it on the porch, Zach set it on top of one of his smaller pumpkins because he said it was small so it needed a little perch so it would feel special.

Once again, I teared up.

Zach is not tall. He often gets made fun of because he's one of the shorter kids in his grade level. 

I wish I could change that, I wish people could just be kind about sizes of others. 

And I wish we could all be a little kinder to ourselves about our own sizes too. 

So our "Breakfast Club"/ "Island of Misfits" pumpkins were specially chosen by my punkins and they  have meaning.

None is perfect, each has its own issues and imperfections...

In their simplest of terms they are:

bumpy...

scarred...

broken....

overlooked...

and judged by size...

But, as they said in the Breakfast Club, aren't we all just a little bit of each of those things as well?

What if we could all accept our own imperfections and the imperfections of others as easily as my guys did with these silly pumpkins...

Now that would be perfect.

5 and 10...

When Braden relapsed with neuroblastoma, he was weeks away from his fifth birthday on August 11, 2009.

We were told that he had a less than 10% chance of survival and that there was no known cure.

The disease continued to spread, but we tried some therapies that had never been tried before and got lucky.

He went into a second remission and has remained in that remission since January 25, 2011.

FIVE years ago!

He had less than a 10% chance of being alive in 5 years.

AND HE IS STILL HERE!!

As Braden would say, "Boom Baby!"

The time between August 11, 2009 and January 25, 2011 was very rocky and we were told more times than I can count that he was not going to survive and we needed to spend our time wisely and enjoy every day with our son.

We continued to fight...and more importantly, so did Braden.

It was a big gamble. We knew that the therapies we were trying could shorten his life even more...

our hope was that it would bring him more time.

Nothing is more difficult than making life/death decisions for your child.

And there is no right answer.

There is only an answer...

and faith...

and HOPE!

My heart has shattered into a million pieces a million times. It has been held together with duct tape and bailing twine for many years....since our daughter Miranda died on August 1, 2001...

Some days it feels like my heart has simply hardened into a rock because it's easier to shut out feelings than it is to feel the pain of them.

I'm a different person today than I was 13 years ago. And that is not all for the best.

Every time I think that I can't keep doing this, that I'm too tired to keep fighting, I think about all of my friends who have buried their children, and in their empty arms and broken hearts, I find my reason to continue.

Being able to continue to fight every day, no matter how hard it is, is a blessing!!

Their loss inspires my fight. Braden's fight and courage and relentless HOPE and positivity give me energy and reason...

and for that, I am grateful, blessed, and changed in a positive way.

When Braden turned 5, I believed it was the last birthday he would see.

Then he turned 6...7....8....

and at 8, it became a crapfest again as just weeks before his 9th birthday, he was diagnosed with a secondary cancer that was CAUSED by the treatments he had to save his life.

That is messed up.

MESSED UP!

The things that saved his life were now going to be the very things that would end it.

We were told that he only had a few weeks to a couple of months to live....

and we needed to spend our time wisely and enjoy the time we had with our son.

Same message as we had heard multiple times before.

But this time, the doctors told us they had NEVER seen a child with his initial diagnosis and his secondary diagnosis survive.

We tried some things that had been done with other children before hoping to buy some time...

to delay the end.

And then came the hope again.

His cancer responded to the treatment...and our teams began to think he could try for a cure with a bone marrow transplant.

So we all were tested and his 10 year old brother, Zach, proved to be a perfect match as a bone marrow donor. So he went through transplant and received his brother's bone marrow cells to try to save his life.

And a year after his secondary cancer diagnosis, he is celebrating his 10th birthday.

cANCER free!

It's early in the post transplant process as it's only been about 4.5 months with the new cells. It's all still a crapfest and up in the air. He stands a 50% chance of relapsing with the secondary cancer (a leukemia),

and because we've replaced his immune system with his brother's any immunity his own cells had developed against neuroblastoma is gone so he stands a high probability of relapse of his neuroblastoma as well.

But...

he is turning ten...

double digits.

TAKE THAT cANCER!

He's kicking it's backside.

All thanks to the courage and fight of a tiger...

the love of an army...

the protection from a God who is bigger than cANCER...

and HOPE.

We weren't supposed to get this day,

but it's here and we are grateful beyond explanation.

5 years post relapsed neuroblastoma diagnosis...

10th birthday.

Hey cANCER...you lose!

TAKE THAT!

What Not To Do On Vacation...

It's really all my fault.

We were on vacation, driving home from Philly to Kansas City after our 9 year old son's cancer scans.

Zach, our 11 year old, is a huge history buff. I find him reading historical fiction in his room at all hours of the night. We decided that because of his interest in history and the military, we would make a few stops on the way home that would interest him.

One of our stops was at Gettysburg.

Something that was on his list of "Top Things To Do In My Lifetime" and he was beyond giddy.

We went past the gift store and Zach asked if we could go inside. I knew there was absolutely no way we were walking out of there without something. So we went inside...

I told you this was all my fault...and that was the first mistake I made that day.

Once inside, he didn't hesitate one second. He made a mad dash for the small stock of toy musket rifles in the center of the store.  Zach is a huge Nerf gun guy and he and his friends fervently defend the world (our yard) from invading forces.

So I wasn't surprised when he immediately said, "Mom...can I get this musket rifle?"

I was tired after the stress of scans, but I still had enough energy to say no because it was too big to haul around in the rental car and he didn't need another toy gun.

So, without skipping a beat, he said, "well then can I get the musket pistol...it's smaller?"

and then he grinned that grin.

Moms know the one I'm talking about, it's the one that softens your heart when you are being strong. At that moment, I knew I was weakening in my resolve.

I wanted to say no, but I was tired of always having to be the one to say no so I did a very bad thing...

I sighed and said,

"Ask your father."

It was a safe answer.

I knew Brian would say no. It was more than $10, it was big, and he has a hundred Nerf guns and he didn't need another toy gun. It was an illogical thing to buy and Brian is an engineer...driven by logic.

I recognize it was wrong to pass the task of saying no along to dad so he could be the bad guy, but I am a stay at home mom and I say no four million times a day. I was on vacation for Pete's Sake! I wanted a break from begin the bad guy....

and I just couldn't bring myself to say no to something that I knew was going to make that smile disappear.

To make it worse, after I told him to ask his dad...

I scurried outside the gift shop with our nine year old (like the chicken I was) so I wouldn't even have to see his face when his dream was crushed with the "no" answer that was coming.

Outside the store and I braced for the sad face that was going to be coming out at any moment. My stomach was churning because even though I knew it was the right decision, I was bummed for him.

But I did not see a sad face when he walked out the door.

He came out BEAMING while wearing a civil war blue soldier hat and carrying his new rifle musket over his shoulder.

My jaw dropped.

What had happened? How had my master plan gone so terribly wrong?

My husband smiled.

I said, "You let him get it??"

His shrugged his shoulders and said "well" a lot.

Lesson one...don't leave the bad work to your spouse because chances are "the grin" is going to melt him too and he is going to cave as well. Chances are he is just as weak as you are...

Sighhhhhhhh....

Zach was so happy about his musket. So happy that he could not stop smiling. He cocked and fired it about a thousand times...

before we even got in the car.

And then once in the car, he cocked and fired it another thousand times.

Then once we backed out of the parking space, he cocked and fired in another thousand times...

and so it continued.

For hours.

When we would mention how that constant clicking was "distracting to the driver", he promised he would just hold and not cock it or fire it. That didn't turn out to be the case. And neither of us had the heart to take it away because he was so happy.

I admit that it is possible that I smiled and mentioned that I was not the one who said yes as the clicking continued.

Our next stop was outside DC at the National FireArms Museum. Incidentally, this is inside the NRA headquarters.

Oh goodie!

I'm not a big "gun" girl.

Remember Zach's love of the military and all things historical?  Well this location made him want to faint from excitement.

His face was sort of like mine was when I saw the Ghirardelli Chocolate Factory for the first time in San Diego.

I had arrived "home"!

Braden and I grew tired of looking at what appeared to me to be the same gun in a thousand cases. Zach informed me that this was not the case as he explained every single fact and figure about every single gun he saw while excitedly gasping and dropping his jaw at each and every one.

So Braden and I went outside and sat under some trees, played, and waited....

for them to get out of the gift shop.

Now,

you would think that the thousands and thousands and thousands and thousands of clicking and banging noises in the seat directly behind Brian as he drove would be incentive to say no this time,

right?

So I wouldn't even need to mention that we didn't need a second toy rifle.

You would be wrong.

He came out with some rifle thing that had a pump that allowed him to jerk it in the air and cock it like Arnold in The Terminator.

AWESOME!

So now we had TWO guns continuously being cocked and fired, cocked and fired, cocked and fired, cocked and fired, cocked and fired, cocked and fired...

(reading that over and over isn't nearly as annoying as hearing them cock and fire over and over and over, trust me)

But he was so very happy!

The next morning when we got in the car to head out for the day, the guns were "mistakenly" left in the back where he couldn't reach them while we drove.

Craziest thing!! How in the world did THAT happen!?

Lesson #2...do NOT...I repeat NOT allow your child to purchase a toy musket or rifle thingie...

and then retain it in the vehicle while driving.

I can still hear the clicking in my head....

and it's been like two weeks.

But I can also get to see him smiling from ear to ear.

Maybe, in retrospect, it all worked out.

Maybe ;)

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!

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.