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!

How do you sleep at night...

I don't sleep much and when I do, it's not well.  No parent who has a child with cancer does.

The night before scans or a bone marrow biopsy/aspiration is one of those nights that is extremely difficult to get any rest.

Braden's autism gives us the blessing of him not knowing what he faces the next day. Honestly, that really is a blessing because he doesn't lose any sleep.  

Each time we take him for treatments or procedures that are going to be painful, I feel horrible. 

With that innocence and trust he places in us to keep him safe and happy, it weighs heavily on our hearts that we have to take him to the hospital to allow painful things to be done to him to try to help him survive.

Another thing that every parent of a child faces.

It's tough on the heart...

Braden just had a bone marrow biopsy and aspiration and those are never fun. Most children with cancer have to endure these, some fairly frequently. As of today, Braden has them every three months.

Let me show you what these brave babies go through.

First, this is the child we enter with...full of giggles and laughter and energy...

Braden does not go under full anesthesia. Instead, we do his bone marrow biopsy and aspiration in an exam room in the clinic under "conscious sedation".  Yes, he could be put into a full, deep sleep but when they do that, they have to run a breathing tube and that isn't always good in Braden's world as far as recovery.

He doesn't feel any pain during this conscious sedation, but he is aware that something is happening and he can feel the pressure.

He does not enjoy the experience and once we put on his pulse oxygen monitor, he realizes he is going to have to "lay on his tummy today" he tries very hard to convince us that we don't need to do it.

We also give him some versed which makes it so he doesn't remember what happens during the procedure...

I would like some too. 

I always stay in the room and help hold him down. Yes, he tries to get up and he frequently tell us he wants to go home now....

and that he does NOT want a bandaid.

He is EXTREMELY emphatic about that!

I stay by his head (with his tigers) and put my body weight across his shoulders and kiss him and tell him how brave he is while Dr. Neville goes about the business of the biopsy and aspiration.

The puncture is done with this treat...

See that long, thick needle? It has a core...the top is what you think it is...it's a screw that is twisted and turned into his his/back to create a hole in the bone.

Read that part again...HOLE IN THE BONE....

sounds pleasant doesn't it?

Now, imagine holding your child down while he is telling you he wants to go home...PWEASE MOM while they insert this and screw it through his skin into his bone.

Next, she uses this knife to core out a piece of bone marrow...

I will admit that I never watch the actual process...it's hard to see from my location and I'm focused on keeping him from sitting straight up and keeping him calm.

These are other tools of the trade...

If you are squeamish about needles and medical things, you are probably cringing right now. 

I'm not squeamish, but I cringe at the thought of this being shoved into my baby.

And doing it is not a choice, if we want him to have a chance to live.

And that....is messed up...

way the hell messed up!

He always does a great job and today he loudly said, "NO BANDAID" after Dr. Neville did the aspirate.  So as Dr. Neville put the bandaid on and he once again reminded her "no bandaid", without skipping a beat she told him that "Angela did it", she's our nurse. We all busted out laughing as poor Angela said, "Heyyyyy"! :)

Funny how with all of that tray of torture tools, he is most worried about bandaids...

(but he really does dislike bandaids)

After the procedure, Dr. Neville gave him lots of hugs and snuggles and he started to wake up.

We have to force him to lay down and chill because he tries to get right up and run around.  

He's 100% courage and 0% balance on all of those sedatives.  

This is the face we leave the hospital with...

Once home, we snuggle...

And take silly selfies per his request...

Kids with cANCER are brave....brave beyond the capacity of explanation of the word brave...

Parents of kids with cANCER follow their kids example of bravery...

and that is why I stay in the room while they do this procedure.

That is why I help hold him down...and talk to him...and kiss him...while they jab those horrible long needles and knives into his back and bones...

because I want to be the one there for him when he cries out to go home...

and not have a bandaid.

It's also why I don't sleep at night.

Someday in the future, people will look back at this horrific procedure and its tools and wonder why we ever had to do it that way...

sort of like how we look at leaching now.

I pray for that day...I work for that day...and I HOPE...

What's to love...

Snow days...

Kids love 'em....but not all parents do.

I get it. When I worked full time, I would have to take a vacation day...

and then work from home because me not being in the office and being on

vacation did not mean that work stopped.

Which was super...or not. ;)

And I get that it's nice to have a routine...and school does offer a routine.

It's just a busy "task filled" routine.

And kids do tend to get in each other's space...and on each other's nerves after awhile...

But like everything, this cANCER crapfest, has given me perspective...

and an appreciate for time.

So after the boys had been on winter break for two full weeks, 

and the first day they were to go back was cancelled due to extreme cold...

I was more excited than the kids!

And I know not every parent was...but I was giddy.

Here's what's to love about "snow days"...

We knew the night before that school was cancelled for the next day

so we made sushi and one of Zach's friends got to join us. We didn't

have to worry about getting to bed by a certain time.

Bedtime doesn't matter on a "no school night"! :)

The next morning I got up when Braden woke up at about 8:00 am. 

That's about 2 hours later than on school days. 

Sleep rocks.

I took my time working out, getting breakfast, etc. and finally

I assumed my "on break" uniform...a t-shirt and...

Yoga Pants!!

no make up...

or curled hair. 

(I did brush my hair...well kinda)

Now THAT is what I call a vacation! :)

Then the fun began....

the "snow day" detour routine:

First, we played:

SuperHeroes...

and Braden Saved The Day!

Build Your Own Marble Tower..

And...we really did lose our marbles...

Braden said they got away and rolled down the heating vent.

Whoops!

Thankfully,  they had just rolled under the curtains...

but it took a LONG time and lots of searching for us to figure that out. 

I was wondering how I was going to tell dad we lost our marbles in the duct work. 

We added masterpieces to our exclusive art gallery...

Installed a new transportation system...

Read the stack of books Braden checked out from the library the day before...a true detour.  

While driving past the library, he said he loved the library and loved to read 

and could we please, PLEASE go to the library...

so we turned around

and went to the library.

And we have read the same book about trains about 7 million times...

over and over and over...

and every time he claps and squeals with delight.

I could read it 7 million more times for that smile!

Even if I am sick of it.

Next, Braden practiced his precision lining up toys...

...it is entirely possible that he has his mother's need for straight lines... ;)

I'm SO proud!!

The first bunch covered my entire dining room table.

The second bunch protected my piano.

Pretty much every space in the house was covered in toys! 

and the toys had adventures and conversations...

Pretend play with beautifully expansive language and scenarios...

Kids with autism don't always do that.

BOOM BABY!!

See, the boys were learning on their day off...reading, art, language...

...and music...

Zach practiced his trombone and taught me how to play 

"Itsy Bitsy Spider" and "Mary Had A Little Lamb"

That was SO much fun!! 

Seriously!!

But I still can't quite hit the note "D" though...it's more like D flat....

ish.

So I got my flute out to show him what I used to play in band...

I actually remembered how to play the notes...

WOO HOO!!

But sadly, it was pretty squawky! :)

Okay, I was horrible 

and I would not be sitting first chair anymore.

But it was still fun!

And Zach still thought it was really cool!! 

(I hope he never grows up and loses that happiness and joy about things)

After all of this "snow day" fun,  my house was a wreck!

And I'm not a "wreck" kind of girl...

 I love those straight lines with everything in its place...

But...

The army had been in my basement and saved the world...

 in fact,

there had been multiple missions across all levels of the house...

and each level looked equally dismal.

There was evidence of cooped up children everywhere I turned.

Even my dishwasher became a basketball goal... :)

My friend, June, had given me this to remind me to chill out about the disaster zone...

She was right...

We WERE making memories in that mess.

And learning math:

probability, odds, number sense....

No one said it had to be "conventional learning". :)

Finally, it was time to head up for showers and pajamas 

because the next day was going to be a school day.

BOOOOO!!

So after multiple kisses...

and snuggles...

they fell fast asleep.

While I prepared for the 6:00 am wake up call...and

jeans,

make up, 

real hair brushing

rush, rush, rush....

no more:

SuperHeroes saving the day

Losing our marbles...

figuratively...

...and literally...

 no more art class

reading the same book over and over...

and over and over and over again.

 no five card stud math

no more band class

(which the neighbors might thank me for)

No more battles waged and won 

with a barrage of Nerf bullets...

found in the strangest of places.

No more straight rows of toys covering every piece of furniture in the house

no more boys yelling and screaming

no more constant motion of a house full of kids

no more "MOM!!! He's touching my stuff!"

no more random hugs and kisses during the day for no reason

no more tickle-fest moments that steal your oxygen because you laugh so hard

no more "come with me mom!"

 it was all replaced by

toys in bins

fresh vacuum marks in the carpet

 and silence

...until 3:35

when the rush of homework, supper, practices and busy schedules begins.

I'll take snow days any day...

because it gives me the one thing I want more than anything...

time.

Brave...

A few years ago, I found a short story by John Alessi that makes me cry every time I read it.

My heart is constantly saddened watching Braden have to go through all that he endures. 

Autism, 3 rounds of cancer, cataracts, asthma, so many challenges...

and any ONE of those things would be enough for anyone.

No parent wants their child to suffer...

even for one moment, 

let alone his entire life...

and through off of his suffering, Braden has been the most positive, loving, happy, and sweet person I have ever met.

(yup...biased mom but it really is how I feel) :)

As I was searching to make sense of why he had to have so much crapfest in his life, I read this story.

And it gave me a little peace.

Perhaps those that suffer the most,

those that have to go through trials that are too big...

endure them for a reason.

Maybe Alessi is right...maybe brave little souls are gifts from God...

and maybe they do unlock the love in people's hearts...

and through their suffering bring humanity to this world.

That is what Braden and his attitude through his crapfest has done for me.

I hope you enjoy this story 

and that it brings you a little peace as it has me.

"Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased."

Santa's Gift

On Monday, December 9, Braden had a clinic appointment and we got really good news.

Not only did his counts qualify him to receive round 5 of chemo for his mds cancer, his platelets were at 151,000.

That is normal!!

And that is the first time EVER I can remember Braden's platelets being normal.

It means the chemo is very likely working to quiet the mds...platelets would lower if it was not working.

After that awesome news, we had no choice but to skip school for the rest of the day and have a detour!

Okay, we had a choice...

but the going to school choice was just not a good one.  LOL!

So we went to the mall and Build A Bear. Braden has had four gift certificates for a long time, and we just haven't had time to go.

Well...we saw an ad for Rudolph stuffed animal on television...and he was SO excited.

He stood at the television with his mouth gaping open...once the ad was over, he turned to me and pointed to the television and said, "IT'S RUDOLPH!!!!!!"

So we went to Build A Bear to make a Rudolph.

I have been to Build A Bear twice with the boys...one time was just Zach and he was about 4 at the time. The guy at the store kept trying to up-sell him on everything (like I think they are supposed to) and Zach was having none of it. It was absolutely HILARIOUS!!

"Why do I need THAT?" he would say every time the dude tried to sell him something else. It was priceless!

Well...Braden quickly spotted Rudolph and beside Rudolph was Clarice...the female doe who encourage Rudolph, told him his red nose was glorious because it was different...which is pretty much what Braden's friends do for him with his autism and cancer...

and then she got "Abominable Snowman-napped" while searching for Rudolph and then he rescued her to everyone's delight. ;)

He then very sweetly started to sing her song from the movie in the most beautiful falsetto voice...

"There's always tomorrow...for dreams to come true..."

I cried...

so he got Clarice too.

And we got Frosty for Zach...shhh, it's his Christmas present to his brother.

He kept singing that song the entire time he was putting the stuffing into Clarice...he kissed her heart and when the lady told him to make a wish when he put it in, he said, "she's a good friend".

I cried again....to me, it meant that he was thinking about his good friends.

He is the most blessed boy in the world to have SO many wonderful friends....

they see Braden as a special boy who they love...not a strange kid who has autism,

and cancer.

Our school staff and parents are REMARKABLE and so very caring!

So by this time, I had already broken into tears multiple times....the poor girl helping us asked me if I was okay.

That's a dangerous question...one that garnered a response of

"relatively". :)

We gave the animals their baths, named them and paid for them with our gift cards and left the store with three huge Build A Bear boxes...no one tried up up-sell us anything!

WOO HOO!!

It was really a fun time!

Braden carried Rudolph in his box and he showed him EVERYTHING in the Disney Store...which was very smartly located next to Build A Bear.

We escaped without a single purchase.

Seriously!  :)

We walked out of the Disney Store and around the corner to leave and then we saw him...

Red hat, white beard....

Braden saw him first,

he turned to me yelled so loudly everyone turned and smiled as he screamed,

"IT'S SANTA CWAUS!!!!!!  MOM!!!! IT'S SANTA CWAUS!!!!!"

And then he simply bolted...

his Rudolph box flailing and bouncing beside him.

I freaked out because he ran so fast and there were many people....I started to run behind him asking him to stop.

He did not stop...

He did not slow...

He did not go through the line (thankfully no one else was waiting).

He climbed under the waiting line ropes and ran to Santa.

By the time I got there, Santa looked at me and said, "Is this for me?"

He was holding the Rudolph box in his gloved hands.

I told him no, that he had just made it.  And Santa said,

"He ran up to me, jumped in my lap and said...Santa, this Rudolph is for you"

Braden turned to me, ran to me and was jumping up and down. He hugged me and said, "Mom, I give the Rudolph to Santa".

Well...more tears.

Santa told him that he had the real Rudolph so he could keep his but that Rudolph would definitely be leading the sleigh this year and that he would stop at our house with Santa.

Braden thought that was pretty cool (after I interpreted it for him). Autism can make understanding stuff like that a little tricky. :)

He took a picture with Santa, picked up Rudolph and off we went.

Rudolph and Clarice haven't left his sight except for school hours, they are that special to him.

But he was willing to give Rudolph to Santa.

There's a lesson there.

For all of us...

Christmas isn't about getting....

It's about giving....

and it doesn't have to be "stuff"....

it can simply be about giving love, and kindness,

and hope.

Monday gave us all three!

More Than A Holiday...

Maybe Thanksgiving should be more than a holiday.

Maybe it should be a way of life.

It's possible that in our quest to live life to the fullest and make the most of everything we have available to us, we forget...

to be thankful for what we have.

I'm guilty.

If we are each honest with ourselves, we are all guilty.

I'm not talking about not being sad, not hurting, ignoring those feelings of anything less than happiness.

Acknowledging and dealing with those feelings is healthy, warranted and needed.

I'm talking about making that our focus.

Complaining about the long line at the checkout at the grocery store, the ridiculous drivers on the freeway cutting us off, snowy/rainy days, the government...

Annoyances.

I still complain about those things and I voice my opinion (as we all know)...

And that's okay.

But...it's also important to see the other side of the coin about those things.

Acknowledge the "yin and yang" of things in the world.

The flip side is that we have food at a store and we can go get it anytime we want, we have vehicles to carry us to wherever we want to go and we can travel feeling safe and secure in our freedom to do so, we have precipitation that allows our food to grow and our kids to play in....

I'm sure I'll think of an upside of government if given a few days. ;)

Everything has two sides...an up and a down.

And while it's okay to complain about the down, I think we should focus on the up.

I do that far more after Braden's cancer diagnosis.

One of the things going around on Facebook in November is folks posting something they are Thankful for each day in the month of November.

I love that idea and I love reading others' posts about what they are thankful for...it's enlightening and a good reminder to be appreciative of our gifts.

I once read something that said, "What if all we had tomorrow was what we thanked God for today?"

That simple phrase changed me in more ways than I can tell you.

What if....

What if every day we stopped to just be thankful...

instead of wishful....

instead of asking for...

just to be quiet with our hearts and minds and be grateful.

I took a technology break for several days last week. Few emails...I did do a few for work and medical purposes, no social media...

And I allowed myself to get "centered" again.

I spent my time simply being grateful...

As I waited for results from Braden's bone marrow aspirate which would ultimately determine if he was headed into transplant which will, without a doubt, change his quality of life if not kill him.

It was a lot to think about and I had a lot I wanted to ask for as I prayed.

But I didn't ask for anything.

I hoped....and I prayed hoping I would have strength and courage to continue to fight...

But mostly, I prayed hoping I would have strength and courage to accept....

even if I didn't want to accept what was offered to me.

Everyone who knows me knows I am a fighter...to a fault.

But somehow during that break, as I looked into my son's eyes and felt his heart, I simply needed

grace...

understanding...

and the ability to accept.

To my shock, we got good news. I was so prepared for bad news that it took me half a week, numerous emails from our teams telling me to accept it and that it was valid, and then labs yesterday to confirm it before I could accept it...

I guess I forgot that acceptance could also be acceptance of good news.

There's a whole lot of irony there.  And a whole lot of stubborn Irish genes at work as well! :)

And I give thanks for that lesson.

An attitude of gratitude...

every day....

Gratitude for:

the yin and yang, of everything...

my "people", those I call family and friends...

our daily bread...

forgiveness....

continual learning and growth...

balance...

and hope.

It takes far more strength to be thankful than to be wishful.

It's not easy and I'm certainly not perfect at it. As one of my very wise friends would say, "I'm a work in progress".

At the risk of sounding reminiscent of The Grinch in his story... ;)

maybe this holiday means a little bit more,

more than a day or a month,

maybe it should be a way of life.

Every day should be a day of giving thanks.

Unforgettable...

On Friday, we got a call from Sporting KC asking if Braden would come to their awards banquet and present the Humanitarian of the Year Award to Aurelien Collin. 

He would need to stand on a stage with lights shining at him in front of a crowd of people and hand an award to Aurelien with Cliff Illig (owner of SKC) and Coach Vermes. And he would need to "dress up".

Now that request hit every single "no way" button for Braden. He has autism and I wasn't sure he was going to have anything to do with this, but I remembered the night he was honored in the Victory Suite and he hopped up and waved to everyone in the stadium like he was the Pope. It was PRECIOUS and I was so proud of him!! The crowd ROARED but he continued to have a blast!!

So I talked to Brian and we figured we would try it. 

A once in a lifetime detour!  And a major challenge for his autism.

It was on the field at the stadium and it was beautiful! A little chilly for Braden even with the heaters, so we stayed inside and played until award time but when it was time, we went outside.

He wore jeans (which is a major victory) and a button down shirt (another, "you have to be kidding me...he's really doing this moment")! You couldn't see his shirt because it was chilly enough we had him wear his coat on stage but he did it!! BIGGEST BOY!!  AND...he didn't even fuss...he was excited to wear his jeans!!! 

WHAT???  

SO not what usually happens, tears and "I not" fixed with me telling him "just until and then we will get a present".

Not yesterday though...what a big, big boy!! 

As we were getting ready to go out to the dinner/stage area on the field, Braden started with "I not like this....I not want to go..."  I was worried but Brandi, the community relations person came in and helped me distract him. I told him we would get to give Aurelien a trophy and that was a BIG incentive. Braden LOVES trophies!! 

He talks about trophies all the time. So much that one detour day this summer, he and two of his adult friends, Ms Kim and Ms Jo, stopped on the way home and got trophies for Braden and Zach! Now they each have a "best big brother and best little brother trophy". SOO cool!!  In fact, for my birthday, Braden told Brian he wanted to get me a trophy so they had a trophy made for mom! :) 

Priceless!!

The first person he got to see was CJ Sapong. CJ and Braden were featured in our 2014 A Year of Hope Calendar with Sporting KC. And CJ is AWESOME!! He is soo funny and silly! B had a great time with him so when he got to see CJ again, he was very excited!

During the Calendar Shoot

Last night!

Well, we had arranged that I could go on stage with him if he wouldn't do it, but when we got there, I asked Mr. Illig to hold his hand and take him up on stage. 

And Braden walked up with him! 

ALONE!

He did it!!

Okay, he fell on the stair, but Mr. Illig had him and helped get him back upright (it was a really tall stair and he didn't expect that...plus he has his mother's graceful moves) ;)

The emcees talked about Braden and that we started Braden's Hope and everyone clapped for B...it was SO very sweet!!!

He then stood on the stage between Mr. Illig and Coach Vermes and held the award. Aurelien came on stage and knelt down beside Braden. He put his head down and Braden rubbed his bald head! 

Mr. Illig to Braden's right, and Coach Vermes talking to B on stage

SO cool!!

It was at that point that the tears began to flow for mom.  

Absolutely priceless!

Aurelien Collin smiling at B and sweetly patting his shoulder. WOW!

Everyone clapped and they took pictures! It was just like Braden Hofen was any other kid!

ANY OTHER KID!!

Being able to type those words is more of a gift than I can describe! He DID IT!!

He really did it!!

Aurelien took Braden's hand and walked him off of the stage...making sure he navigated the step safely (because he had had his own toe clip on the way up).

As he held his hand, He asked the staff around him if he could give the award to Braden.

I heard it and tried to process it, but instead just broke into a jaw dropping open mouth, tear filled pose.

And then, he bent down...handed the award to Braden and asked him to keep it for him.

Braden's entire face lit up!! 

A TROPHY!!!

Braden thanked him and clutched it to his chest with both hands. The smile hasn't left his face.

What an amazing thing to do!!  Just unreal!! WOW!!

This morning, the first thing that Braden said when he woke up was...

"MOM...I got a trophy!  Where is my trophy?" So we went downstairs to hold it again!

Aurelien Collin, Humanitarian of the Year?

I would say YES!!!

That was an extremely selfless act Aurelien Collin!! You are AMAZING!!

Thank you to ALL of the Sporting Organization...you are unbelievably gracious to all of our kids!!

And you have made Braden smile more times than I can count!

WOW!!!