The Fight For Hope...

“If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward.” 
---Martin Luther King, Jr.

That is what we are doing.

After Braden became immune to multiple therapies, the doctors told us that all we could do is hope for some additional time with him.  That he would not achieve a second remission.

I was broken...completely.

No hope.

Just complete despair.

Then one night, I had a dream....I am certain it was my mom talking to me from Heaven...

There is no other explanation for why this dream would have happened...I believe in "angel whispers".

I woke up in a start, sat up and thought, "Irinotecan and Temodar!!"

The day before this dream, I had an email convo with Philly in which we agreed that Braden should do ABT-751 to try to hold the remaining disease stable.

I woke up after that dream and fired an email off to Dr. Mosse and asked if it would be reasonable and if we could do Irinotecan and Temodar (two chemos).

The gamble was huge.  Braden's disease had proven to be refractory to chemo and I was asking for chemo.

We had discussed these two drugs in August of 2009 when he first relapsed.  After his disease proved refractory to chemo, we had moved past that thought.

Braden's hair had grown back, and he had the most beautiful big, loopy curls.

Dr. Mosse said it had worked for some kids, and if we wanted to try it, we could.

Another one of those impossible decisions.

1.  Do nothing and spend your time without him having the effects of chemo. But death was a matter of time.

2.  Do ABT-751 and hope to keep him stable for a longer period of time (the longest we were told a child had made it in a situation similar to Braden's was 2 years...which seemed like an eternity to us that that moment).

3.  Try the chemo.  And maybe...maybe...it would kill those cells. 

BUT...if #3 didn't work, and his disease progressed, choice #2 was out of the question and we were back to #1. 

I just knew we needed to do #3...I "KNEW"...but...

It is SOO hard to make that choice.  We could give away 2 years of time if I was wrong.

One of the biggest things to me that was that I knew he would lose his hair and I didn't want him to die bald.

It was a visible sign that cAncer had been the reason and that really bothered me. 

Stupid, I know...but it did.

A lot of life can happen in two years...two more birthdays, a chance to lose his first tooth, friends, memories that would last forever...

How do you make a choice like that??

You just jump....

You can't dip your toe in the water and see how it's going to feel...

There is no crystal ball...

You just jump.

I listened to the angel whispers and,

I looked at our son and saw his fight.  Braden wasn't done...he was still fighting with everything he had.

“The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.” 
Martin Luther King, Jr.

Oh my sweet boy...

How your fight, strength, faith, and courage inspire me....

and frighten me.

It would be one hell of a bad deal if I was wrong.

We decided to go for it.

The first two months were nasty but compared to the chemo he had done before, not that bad.

It was outpatient...we had never had outpatient chemo...sleeping at home at night! YES!

We got to play at home, go to the park, and have a life...

And I watched those beautiful curls fall out. I kept several curls when we finally cut it and shave his head again.

Damn cAncer.

Then we scanned...I held my breath...

And the one remaining  piece of tumor near his liver was shrinking...

We kept going....

“We must accept finite disappointment, but never lose infinite hope.”

Martin Luther King, Jr 

 

8 months of chemo.

 

It got really bad. 

 

Braden's gut is colonized with c-diff and the Irinotecan was wreaking havoc on his gut.

 

One clinic day, our oncologist tried to convince me to stop...

 

I said no.

 

So he sent in another doctor who tried to convince me to try to stop...

 

I said no.

 

He came back in the room and I told him "nice try"...

 

and perhaps I mentioned he could go to hell...

 

I'm pretty sure I did, but I did it with a smile so that makes it better right?  LOL!

 

Actually, both our doc and I got a good giggle out of it!!

 

It was this simple...if we stop, he dies.

 

During our multiple rounds of chemo, sometimes his scans would be improved, sometimes stable every three to four rounds when we scanned. 

 

But, again, I knew if we stopped, it would take over and he would die.

 

Then, January 27, 2011...Dr. Mosse walked in after scans...I was holding my breath because I had watched his scan images during the scan and it looked different.

 

I was preparing myself for the bad news.

 

And....she said,

 

I am very happy to be able to tell you that we see no evidence of cancer on Braden's scans!

 

I said in a small, shocked whisper, "I'm going to need you to say that again!"

 

Then tears...every single one of us in that room, except Braden...

 

who just wanted to go play.

 

 

 

It wasn't the end...just because scans show no evidence of disease, does not mean cancer is not there.

 

It just means the scan cannot pick it up because the current technology isn't good enough to get to a small enough level.

 

We would continue to fight....

 

and we continue today.

 

But that day was a huge victory.

 

“Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree.” 

Martin Luther King Jr. 

 

HOPE....TAKE THAT cANCER!

 

And Happy Birthday Dr. King.  Thank you for your courage, fight, wisdom, love and vision.

 

 

 

 

Saturday Zachism Day part 2...

Each Saturday,  I will share a "Zachism" with you.

Zach is our nine year old and he says the funniest stuff...

and he's not trying...it's just funny! :)

Here's today's:

The other day, Zach did something that elicited me saying,

"Zach..seriously...how many times have we talked about that?"

(And I honestly don't even remember what he did that I was frustrated with)

His reply was a casual,

"Welllllllll...

I would guess about 999,999 times.

Hey Mom...we're pushing a billion!!".

...........................

That is why I don't remember what I was upset about.

I hate when he cracks me up when I'm trying to make a point!

:)

Have a wonderful weekend!

Pennies From Heaven...

that's what I call them...

...and they are real.

Once a friend sent me a story in an email about a man that was rich beyond all measure, yet while walking with his friend, he stopped to pick up a penny from the dirty ground and put it in his pocket.

His companion asked him why he would pick up a dirty penny when he had so much wealth.

The man's response was to hold the penny up and show his friend the words, "In God We Trust"

He said that it was a reminder each time he picked up a penny.

In God We Trust.

Not long after reading that story, we were in Philly for scans.  We were staying at a hotel with an indoor courtyard. Braden loved to walk around that courtyard so we did, for hours at a time in the evenings.

And as we would walk, I would pray...

and worry.

During one of our scan visits, I had watched his CT scan and was certain I had seen a new spot.

And they were acting strange and made us do another picture...something about a shadow...

I was sure the disease was progressing.

When we got back to the hotel, I had gone into the bathroom and cried and (in my head) screamed at God asking "WHY?  We have been faithful, we have given it to you, but WHY must he die? I don't understand!  I understood Heaven was the right choice for Miranda and I prayed for her to go to Heaven because she needed you more than I needed her, but WHY, WHY must I give you Braden too..I don't understand!!!"

I got it back together to take Braden out to walk...he loved it and I wanted the time to think, pray and spend a few hours with him before we got what I was certain was going to be awful news the next day.

I wanted a few more minutes of "it COULD still be okay" time before the world crashed in with those scan results.

So we headed out...

As we were walking, Braden stopped abruptly in his tracks and I bumped into him.

I nearly fell and nearly toppled him over with me.

Braden began walking again and I looked down...

there...on the carpet right where he had stopped for no apparent reason, was a penny.

I picked it up...

...and cried.

It was face up...

In God We Trust.

I put it in my pocket.

And the next day when we went for our MIBG scan, I had it in my pocket and I kept rubbing it the entire scan...and I prayed.

I closed my eyes and just kept repeating, "trust, trust..." almost a mantra.

As we left the sedation room about an hour later, I caught a glimpse of Dr. Mosse walking into the CT scan review room.

We were scheduled to meet with her in just a few minutes.

It had to be because they called her to check out "the shadow" from the CT the day before.

I kept rubbing that penny in my pocket and telling myself to trust.

After an long wait filled with apprehension, Dr. Mosse told us his scans looked improved.

I nearly fell over.

I still don't know what the problem with the CT was...

and I never asked because when you get good news,

you just say thank you and move on. :)

I believe that penny was from my mom who has been in Heaven since 1984 when she died from a brain tumor.

In fact, I know it.

I have found a penny on most of our trips to Philly although the past two I have not.  And yes, that worries me, but both of those trips have had a sundog either during or right before (from Miranda).

Once I found a penny on the seat of a cab.

Another time, I found a penny under Braden's chair in the sedation waiting room.

There have been others as well...

I keep every one of them, and on the harder days, I pull them out and rub each of them and remind myself to

TRUST.

Pennies from Heaven...

TAKE THAT cANCER!

PTL!

We are home and Braden's scans were clear!!

HALLELUJAH!!!

What a tremendous blessing!!!

It always takes a looooong time for Dr. Mosse to come into the room to deliver the news.

I should be used to the wait by now, but...I'm not.

His MIBG scan was at 8:00 and then we met with Dr. Mosse at noon to get the results. Another reason I love scanning in Philly.  You get the results moments later. In KC, it takes several days.

Every tick of the clock while you are waiting is audible and painful.

So..I try everything I can to see the scan images so I can get an initial look as the scan as going on. ;)

I sit with Braden during his scan and rub his head...his two favorite toys in the world, his tigers (Tiger and Nudder Tiger) go through the scan machine with him as well.

The MIBG isotope is given to Braden through his port the day before the scan.  It attaches to various organs and tissue in his body and then some things "light up" on scans.

Some things it attaches to normally like the liver and the parotids, etc. 

But...it also attaches to neuroblastoma cells.

The image appears slowly over an hour. Much like watching someone sliding a piece of paper down a page of a book to reveal the next sentence.

Except it creeps.

I watch the image build on the computer and look for anything lighting up that is not supposed to light up.

Big stuff is obvious, but I can't see the little stuff they can see.

The first time Braden had a normal scan I was freaking out because it looked so different and I KNEW the disease was progressing. 

Whoops. :)  This is why is it NOT a good idea for me to watch those images.

The techs always pull up the images to send to the doc as we are still in the room so the docs can check to insure no other pictures are needed before we leave.

Those are the images that are a little more visible...they looked good to me from 15 feet away staring at a small computer screen.

So I felt pretty good.

UNTIL, I waited 3 hours.

Then we waited another hour in the clinic.

As I sat there, I began to do what I always do...wonder and worry.  Maybe it was taking so long because they found new disease and they needed to check things out even closer.

UGH!!

And I pray...I pray a LOT!

Dr. Mosse came in and talked to Braden (she always gets down on her knees so she is eye level) and asked him to give her a high five. 

I knew we were okay.  She always does that when the scans are clear!!

Thank you LORD!!!

There are no words to describe the relief we feel when we hear those words...

and there are no words to describe the guilt we feel because so many of our friends are not this fortunate.

No words.

I will never know why and I will never understand.

I am more grateful than I could ever describe for the time we have been given.  We never take it for granted.

But I wish all of our friends could hear those words.

Braden and I headed to the airport and got there plenty early for our flight. 

Going through security with a child with autism is always a blast!! LOL!

He really does a good job...I'm very proud of him.

We always get pulled aside because we have so many liquids with all of his meds and they have to individually test them.

Mr. Chatter Box always visits with the folks doing the tests..which is awesome, and we've been lucky and had really nice security people doing the tests who don't mind him chatting!

Well...this time, we got a HUGE dude...I mean HUGE!! He was about 6 foot 6 and probably 300 pounds...VERY muscular and looked like he could be an offensive lineman.

BIG dude!!

Serious dude.

It didn't look good.

Well...Braden decided to chat and told him all about everything...that he got his pictures in the cheese (you say cheese when you get a picture taken so he calls the scan machine "the cheese"), and that he went sleepy sleep, and saw Dr. Mosse and Maggie (his nurse), and he played with the trucks and in the kitchen and made the macaroni and cheese, and he had Captain America shoes, and he has two tigers in his backpack and he loves his blue backpack and that he's going on the airplane and the airplane is going to go taking off and go "zooooom".....

and a hundred other things...

including...

"And I go pee pee in the potty. I just squirt the pee pee out of my pee-ann-is".

It was at this point that the BIG dude, began to silently chuckle....then tears rolled down his face.

Mine too, I admit it.

Then Braden started laughing...never EVER reinforce something you don't want him to repeat...and that laughter was reinforcement...so he said it again...to the lady at the airport store where we bought Zach a gift.

As we walked away, I could see the BIG dude walking over to his security team members laughing..I can only imagine the story he told them.

Seriously...this is my life.

As we sat at our gate, I plugged in our iPad so it would be fully charged for the trip.  Braden travels well (now) but the iPad is an essential component to a successful trip.

We were there early enough that the flight to Detroit was still at the gate...it had been delayed too.

This Mr. Fancy Pants was pacing the floor talking on his BluTooth (quite loudly) about some report, I can only assume it must have been an essential TPS report ;) that someone apparently didn't get and they should have read and if they had read it, they would understand that whatever that person was talking about was not correct and why hadn't they read it...blahblahblah!!!

I didn't want to hear it...I was FORCED to hear it...as were the others in the gate area.

Well..Mr. Fancy Pants decided he would send the report to the person on the other end, but his computer had no power so he needed to plug in.

He sat down near me to plug his into the same outlet.  There were two and mine was plugged into the bottom one...the top one didn't work.

He figured that out quickly, looked at me, apparently decided I didn't really need the plug and then...

... and this is the annoying part... LOL!

...he unplugged my plug and plugged his cord in.

Hmmmmmm....

...that there just ain't right.

He began busily working to get his computer to come back to life.

So I simply reached over and unplugged Mr. AquaVelva's plug and plugged mine back in.

He realized it quickly...not sure if it was because I THREW the cord into the middle of the floor almost hitting near his perfectly shined shoes or because his computer went dead.

...by gones....

BUT...when he realized, he looked at me with a "WTH?" look and a gaping mouth.

I gave him the "mom look"...moms know what I mean...the one that says...if you do that one more time, you are going to time out.

And believe me, he needed time out! :)

He got up...stomped like a three year old and went to another gate to charge his computer because it was, indeed, the one and only outlet I could find at that gate.

Not long after, another guy came over. I told him the top one didn't work and there weren't any others.  I could see the stress on his face so I asked if he needed it to work and he said yes but that he would go across the hallway to find an outlet.

I unplugged my iPad for him.

See...all you have to do is be nice and I won't even make you ask and say please...I will just offer... :)

Braden and I went for a walk, found another outlet, charged my phone and the iPad and then made our way back to our gate.

I didn't see Mr. Fancy Pants again...darn...

....we had "bonded"...

and I wanted to wish him a happy trip...

...okay, maybe a one finger wish, but still. :)

I was on such an emotional high, I could have taken on the world.

At least in my own mind! LOL!!

Thank you for sharing the word about Braden and for your thoughts and prayers for his scans.

They work miracles...I just know it!!

We scan again in April...so barring unforseen circumstances, we are good until then...

HOPE!!!

And thanks!! XOXOX!

Scanxiety...

It's scan time,

again.

The time when every parent of a child with cancer,

loses sleep,

their appetite,

and

their minds.

In 2007, when we were first told that Braden had cancer, we were expecting to hear THAT particular word least of all...

Initially we thought the concern would be pneumonia, again, it happened frequently... (I will tell you the story of the missed diagnosis and actual diagnosis someday).

Then we were trying to qualify for a new therapy...

my "mommy intuition" believed there were still cells after they declared him to be in remision. We kept looking for therapy and finally an opportunity presented itself.

We scanned to qualify for that trial, and instead found out that it was back,

and there was no known cure.

SURPRISE!

Damn cAncer!

We have been doing Braden's scans in Philly since he relapsed in 2009...

well....there was ONE time we did them here in Kansas City...

It didn't go well.

Remember when I told you about my hot buttons and that one was lying?

We always sedate Braden with IV Benedryl..works just like Propofal for him with no recovery, stumbly, bumbly, disoriented time.  It rocks!

He was asleep and in the MIBG machine when he woke up and tried to SIT up.

The machine stopped, we got him back to sleep about 5 minutes later, then they started the machine again and the rest of the scan went fine. It took about an hour and fifteen minutes with the reset time, normally it takes about an hour.

Next, they read the images incorrectly and had us completely freaked out thinking his disease was progressing.

SO we had to scan again in a month to check to verify if it was disease or not.  In the meantime, Philly had reviewed the scans and thought what they were seeing was NOT cancer and we should breathe.

RIIIIIIIIIIIIIIIIIIIIIIIIGHT! Breathe!!! :)

As we were trying to schedule those scans, the nuclear med department techs said they would NOT sedate him with IV Benedryl again because he moved too much and they had to restart the machine multiple times...additionally they said it took two and a half hours to do the scan.

KC said he would have to have a full sedation....and be stumbly and bumbly because of that.

I still don't know why they said that...the two techs had always been fabulous to work with...

and I might have been more understanding of their stance, IF it were true.

However, I would have still argued that it didn't matter how long it took if it made it more comfortable for an almost certainly terminally ill child, which Braden was believed to be at that time.

After all, we wait for the hospital all the time....and it's a lot longer than 5 minutes.

Thus, their lie initiated the following (and not so nice...sorry) response from me,

"BITCH........PLEASE!"

and then the immediate initation of actions that lined up with that thinking thereafter... :)

Long and involved story made very short, the "HR Deliece" requested an investigation and I made them check the time stamps on the images as well as the quality of the images (they would have been blurry if he had been moving).

The head of Radiology did so, and came back with her hat in hand.

Of course, they offered to do scans with IV Benedryl thereafter.

I don't think so....

If you are going to lie about something as silly as THAT, (I still cannot think of a reason why they did it...it served no purpose) I have lost all faith in their integrity so,

I'm good...

no scans in KC again.

Luckily, since then, we have needed to travel to Philly to get his chemo refilled for the next 3 month period and we scan every 3 months, so we just scan there.

Plus...he LOVES the really cool sculptures they have in the lobby at CHOP! He sees them and SPRINTS toward them the minute we go through the front doors! :)

 

In between those visits, we go to our hospital in KC for labs, HVA/VMA test (marker in the urine that can indicate nb cells are present), and physical exams every 3 weeks.

And we have a new oncologist here who I LOVE!!!!!  I feel happy about our home hospital again!! WAHOOOOO!!!

(minus nuclear med) LOL!!

I know you may be confused right now because I just said Braden is taking an oral chemo,

but his scans since January 27, 2010 show that he is in remission 

What??????

I know that seems strange but there is a very good reason.

VERY few neuroblastoma patients go into remission for a second time after a relapse.

There are so few that they don't even track numbers on that.

The fact that Braden is in a second remission is due to some very unique circumstances in which he has been the first child in the world to receive two major therapies for relapsed neuroblastoma patients,

And he responded favorably, which is EXTRAORDINARILY lucky!!!!

EXTRAORDINARILY!!! 

We are beyond blessed and we NEVER forget that!

...and then we fought for additional therapy after those two "first evers" to get him into a second remission...

and then we fought for additional therapies to keep him in a second remission.

See..of those children who achieve a second remission with neuroblastoma, the VAST majority relapse again within 6-12 months because...

their scans show no evidence of disease so they cannot qualify for trials as trials are designed for and written with parameters indicating the patient must show evidence of disease.

Well...it kind of makes sense...why do a trial with a kid who is cured?

Or so it would seem.

Now stick with me here aboard the Momma D Logic Train... :)

IF the vast majority of kids who are declared to be in remission a second time RELAPSE a THIRD time within 6-12 months, were they ever really in remission??

I think not.

It's just that the current scan technology we have cannot show cells below a certain limit... it doesn't mean they are not there,

just that the scan technology cannot pick them up to reveal their presence.

SO...doctors and patients think the child is cured when the child is not.

neuroblastoma is a sneaky, ugly, aggressive beast.

It is my mortal enemy...literally...

And fortuately, our oncologist in Philly (Dr. Mosse who is one of my Top 5 Most Admired People EVER) said that very thing without me even having to tell her my thoughts.

AND...she applied to get Braden into a trial for a drug called ABT-751 following his clear scans.

(there was another therapy we did right before that...story for another day).

It's an oral investigational medication (a chemo) that Braden drinks every day for one week and then  is off for two.

Abbott Labs makes this drug and it has helped some kids (like Braden) remain in remission...

HOWEVER, Abbott Labs is not going to be making this drug anymore.

I am supposing it's like most childhood cancer drugs, it didn't help a large enough population for them to make BIG BUCKS so they are cutting it out.

Grrrrrr.... Isn't ONE child enough??

CHOP (Children's Hospital of Philadelphia) and Dr. Mosse appealed to get Braden into this trial as they had just announced they weren't going to make it any longer.

Abbott Labs agreed to allow Braden in and they said they would make enough supply for Braden for 3 years...

Braden would be the last child in the world accepted for this drug.

Then, in October, we learned that they decided to only make it for him through June which is 14 months shy of what they promised.

WHAT????????????????????????

Needless to say, I have waged a one mommy war with them with some help from a few incredible people (that's also a story for another day, but it's a really good one filled with heroes) and we are appealing informally (it's not a law suit).

Braden has been taking ABT-751 for a year and five months.

I can't prove the drug is what is keeping him in remission, maybe he really IS in remission and the cells are gone...

BUT...they can't prove it ISN'T what's keeping him in remission...

...and I'm not gambling with my son's life...

Period!

(and at this point, I'm willing to bet that you understand why the title of this blog is No! SERIOUSLY, this is my life!) LOL!!

We have to scan every 3 months and his next scans are this week, January 15 and 16.

PLEASE send prayers and HOPE!

Scanxiety has arrived...

If he relapses a third time, Dr. Mosse has been VERY clear that any hope for a cure is gone.

I won't be able to update this blog from my phone while I'm out of town, but I will update our CaringBridge site.

If you want to check and see how his scans turned out before I can post here on Thursday or Friday, you can visit:
www.CaringBridge.org/visit/bradenh

It should be mid-afternoon on Wednesday when I am able to post so I will be off this blog for a few days.

We always wear our same t-shirts during scans...one is a Braden's Army shirt and one is a HOPE shirt (both are yellow because it's Braden's favorite color).

We invite you to join us in wearing yellow those days if you would like to support him.

I am extremely superstitious (I know it's stupid but I am)...and every clear scan, we've been wearing those shirts. :)

Thank you for your thoughts, prayers, love and HOPE!!

We never take clear scans for granted and I literally get physically ill every time we go, but...

We believe in miracles...

because we live with one.

And...thank you so much for reading this blog...

I do watch the number of clicks we get and it makes me smile when they go up.

It means people still care about Braden and there's NOTHING more important to me than my boys.

Thank you SOOO very much!!

And you always have my permission to share this blog with anyone...that's the goal..

I want to share it so others will read and become aware, question everything, laugh (hopefully), fight, and HOPE!

There are share buttons at the bottom of each entry (and some on the sides as well) so you can share it on Facebook, Twitter, Google, or email.

I'm @bradenshope on Twitter and I do follow back if you follow me but I'll be honest...I'm not a Twitter expert...I'm much better at Facebook but I try!! Remember, I'm old!!

and twitter-fused!! :) (get it?  confused/Twitter) ...yea...it was weak..sorry! :)

I would be grateful if you would share this particular post so even more people can send thoughts and prayers for Braden during scans!!

MANY thanks and lots of hugs!!

With HOPE,
D :)

Saturday....Zachism day....

Zach is 9 and says the funniest stuff!!

And he doesn't mean to...

He's blonde like his mom!! LOL!!

Laughter is the best medicine and kids DO say the darndest things!!

Each Saturday, I'll share a "Zachism" with you to start your weekend with a grin (hopefully).

This one is an oldie, but a goodie and still makes me chuckle.

I shared it with the comedian, Sinbad, who cracked up.

Sinbad has been an advocate for our kids with cancer, GREAT guy!!

So here's our first Zachism:

When Zach was 4 and Braden was 3, we were early into this cancer mess. 

We told him we had to take Braden back to the hospital as a family the next day to get a "cat scan".

He shook his head and said, "man, he gets a lot of those".

He thought for a bit and said, "but when can he have a DOG scan?"

LOL!!

TAKE THAT cANCER!!!

Happy Saturday!!

Big Girl Panties...

Sometimes, I think I'm very right,

when...

I'm actually equally wrong,

but for a different reason.

Sigh......

Zach and I had a heart to heart talk the other night while I was kissing him goodnight.

We were talking about how God forgives us, and we talked about the words in the Lord's Prayer,

"forgive us our trespasses as we forgive those who trespass against us".

To me, that means that God will forgive me as along as I am forgiving of others.

Makes sense...

and I try very hard to do that...

I preach it all the time...

But at that moment, I realized that I had an epic fail on my hands.

I've been so busy being angry at someone who did something I view as wrong that I haven't seen how wrong I am for my nasty feelings and judgement of that person instead of trying to understand,

and, more importantly, forgive!

I have a few "hot buttons"...

 I'm Irish so my hot buttons are really HOT BUTTONS!!!  LOL!!

Once you push one, back away because she's going to blow!!

And I am not tactful, not gracious,

and NOT ambiguous.

My hot buttons are fairly limited.  It's pretty simply (to me):

1. Don't hurt my kids,

EVER

2.  Don't lie

3.  And don't be mean.

Pretty simple, yet extraordinarily complicated at times.

The person I haven't been able to forgive is actually a wrestling dude. 

Zach wrestles and most of the people we meet are awesome!

But there's this one guy...

and there was this one evening.

I took Zach to practice because Brian was out of town.  I had instructions from Brian to hand Zach's registration paperwork to this particular person for the upcoming tournament.

I walked up, told him who I was, and what I needed to do.

Braden was with me, he was walking right in front of me with my hands on his shoulders steering him.

He looked at Braden and said, "and why are you not wrestling?"

He was being cute, recruiting....

It was not meant to be mean.

I smiled and said, "He has cancer and has a port and he cannot wrestle with a port."

I didn't even bother to explain that he has autism as well and that, additionally, he wouldn't be able to wrestle these boys for that reason.  At the time, we didn't have an official diagnosis although we had "known" since he was 8 months old and had been dealing with it therapeutically as if it were autism.

The wrestling dude said, "Welllllllll...if he was a WRESTLER he wouldn't have that!"

YOU SAID WHAT....????????

Momma Bear was NOT amused!!!

Cue the Clint Eastwood stare...

And the whistle from "The Good, The Bad, and The Ugly" :)

Seemed to me, he just said that if Braden was a wrestler, he wouldn't have cancer.

??????????????????????????????????????

Maybe he thought he was being funny.

Bad idea Pilgrim!

Braden was right there....

Thankfully, he didn't understand because of his autism, but the wrestling dude didn't know that he didn't understand it!

Wouldn't he have realized how disrespectful and mean his comment was to a CHILD who had been fighting cancer...

....with more strength and courage and perseverance than all of the wrestlers in the world combined to the power of infinity...

Plus one!!

HURTFUL AND MEAN AND AWFUL!!!!

Who in the world would tell a child he wouldn't have cancer if he was a wrestler?? 

Assuming he did not hear the cancer part correctly, I looked at him in the eyes and spoke slllloooowwwwllllllyyyyy,

clearly...

and LOUDLY (all activity in the hallway stopped and all of the moms and younger siblings waiting for the boys in the wrestling room turned to watch due to the volume of my voice),

and I said,

"I'm pretty sure he WOULD have cANCER even if he WAS a WRESTLER!" 

I did NOT end it with "YOU DUMBASS",

but I was thinking it...

And then I turned around to exit before I used very bad words.

I took one step and heard a shouting voice say, "YOU NEVER KNOW!!!"

.... I paused...

And it took every ounce of self control I could muster to just keep walking and not turn around,

stick my finger in his chest,

and bring him to his knees with Braden's story of strength and courage.

So as I sat down in the hallway and waited for Zach to finish practice while playing with Braden,

and I stewed.

The dude walked past me several times and I honestly had to stop myself from sticking my leg out and tripping him.

Not one of my finer "thought moments", but it's true.

I was SO mad.

Everyone that knows the wrestling dude tells me he HAD to be joking and kidding around because he's a great guy.

Last time I checked, childhood cancer was NOT a joke,

 and I was NOT amused.

After that night, I refused to take Zach to practice ever again when Brian is out of town.

A friend takes him or he doesn't go.

AND...as I was talking to Zach the other night, it hit me....

"Forgive us our trespasses as we forgive those that trespass against us"...

Several months have passed and I have been sitting on my throne of  "righteous indignation"...

filled with anger and venom.

And I KNOW THAT I KNOW BETTER!!!

I don't know that the dude knows any better.

I have to put my big girl panties on,

and I have to face this man and I have to forgive.

I have not been doing that and that reflects on ME and MY character.

So I'm going to suck it up, put on those big girl panties...

And take Zach back to practice when needed,

and if given the opportunity in the right setting, I will explain it to this dude...

I SOO hope that opportunity presents itself because I will share with him that I'm sure he was joking...but....it wasn't funny and this is why...

and I will do it without four letter words...

...okay...

I will TRY to do it without four letter words...

hopefully! :)

Once, I was at a conference in D.C. and the speaker said,

"We show respect to others because of who WE are, not because of who THEY are".

DANGIT!!!!!!!!!!!!!!!!!

In my need to be "right", I forgot that I also need to be forgiving.

Anger blinded me.

Maybe there's a lesson in that for all of us!?

Maybe if we all stopped and thought about how WE are handling things instead of how THEY are handling things, we would have less drama and hurt!?

If you are going to preach it, live it.

I really dislike big girl panties!!

But I'm going to try them out.

HOPE! :)