Pain is pain...

So things in our lives have been a little crazy...and sad...and fearful...and worriesome...and all shades of crappy....

Mixed with overwhelming joy and love and happiness...

It's the roller coaster ride of a family who has a child with cANCER.

Up and down and twirly and swirly....then you throw up...then you laugh...

but you always want off the ride.

This is our third time on the ride.

Braden's third cANCER battle.

I didn't sign up for this shit...and I didn't get in the line...

I'm pretty sure I was thrown onto the ride kicking and screaming.

Needless to say, it's been chaotic and overwhelming.

Well, I have had many conversations with my friends in which I've learned that they, too, have had their own roller coaster rides. Filled with their own twirly swirly dips and twists, throwing up, and wanting off.

But they haven't said anything to me.

When I do finally get them to come clean, they apologize profusely and say, "You have SO much going on right now...I didn't want to bother you and I didn't want to make you more sad".

So let's just talk about that because it's sort of an taboo thing to talk about in society. Nobody really knows what to do and how to handle situations like mine.  I've always believed open communication and talking about the elephant in the room is the way to go.

I can't speak for everyone in similar shoes, but this is what I need and want my friends to know! :)

First, NOTHING can make me more sad about my own stuff.  Nothing.  Once again my son has overwhelming odds of dying or surviving only to have devastating side effects which could result in him not having "quality time".

So nothing can EVER make me more sad about that.  I have crossed over into the infinity to the power of infinity, plus one level of sadness.

I'm kicking ASS in the Sadness Olympics!

If there were such a thing.... LOL!

BUT....it doesn't mean that I can't empathize with someone else's sadness. And it doesn't mean I can't be helpful with someone else's "stuff".

I'm not saying I will be helpful...I'm still me and quite often a complete mess and I often insert my foot into my mouth...

(figuratively)

Unless I have had entirely too much tequila...

Then all bets are off.

But I want to try.

I want to be a part of my friends' lives, I want to hear from other cANCER moms, and I want to try to help find resources and help for them too.

It actually helps me to help someone else. It gives me something that I can try to control and result in a better outcome for someone else.

I want to be a part of my friends' lives.

It fills my heart and soul to TRY to help.

So let me.

Many of my friends have apologized for what they are worried, stressed, sad, fearful about because they think what they are going through is not nearly as big as what I'm going through.

My response is always the same...

Anyone who feels the need to quantify sadness, worry, stress, and fear is not thinking. And, frankly, not a very good person.

Pain is pain.

Fear is fear.

Sadness is sadness

Worry is worry.

Heartbreak is heartbreak.

There is absolutely NO need to quantify, no need to measure anyone's pain against someone else's.

So please don't feel the need to quantify and compare.

Pain is pain.

Period!

I do not believe it is disrespectful or insensitive to tell me about your personal crapfest. And, I may cry with you...and that's okay, I would have done that before this cANCER mess so I'll probably do it now.

I feel isolated and shut out and like I'm a bad friend when I am not a part of your lives, even the bad stuff, and even with my crapfest.

So stop making me feel worse about myself by not sharing!! ;)  LOL!!

My heart is big enough to handle your happiness too.  Yes...it really is.  So when you become pregnant, your child reaches a major milestone, you get a new job, you are going to Hawaii...whatever it is... (and those are all made up as I type but if you are going to Hawaii...I want to go in your suitcase please) :)

I can take it!

I can actually be happy for you, even on my really crappy days.  I WANT to be happy for you and I want to celebrate with you. I need things to smile about also!

Just treat me like you did before the new diagnosis. I'm still me. I have another round on the roller coaster from hell but being friends, sharing your lives...gives me a brief moment on the roller coaster of straight, slow track where I can focus on something other than when the next big dip is coming that is going to make me throw up.

All of us have friends who go through hard times. The best advice is ASK your friend how they want to be treated...do they want to hear your stuff or not...

and for those of you who didn't ask me, but heard it anyway...now you know! :)

My friends are my family. I love you all and we will get through my roller coaster and your roller coasters by being there for each other.

It's what friendship is all about.

Love you!
Deliece

First day...

On Thursday, Braden went to his first day of third grade.

TAKE THAT cANCER!!

He was SO very happy to see all of his friends again. He has gone to school with most of these kiddoes since kindergarten and they are just AMAZING!!

I once wrote about how one day we were at the park and a little girl who didn't know him asked her mom what was wrong with Braden when he spoke to her.

Because of his autism, his language is quite delayed (but I still think he's awfully sweet and cute).

I was very taken back by that reaction because the kids he goes to school with are the exact opposite of that. They embrace him, love him, and help take care of him.

His classmates and friends go out of their way to include him in things and to help cue him to participate. I really cannot adequately describe to you the admiration I have for each of these children.

Many people could learn a great deal from them. They care and love openly and completely just because they do...not because anyone rewards them for doing so, not because they are being paid to do it, not because they are getting any recognition...just because they care.

Ummm...that's pretty amazing, remember they are only 8 years old...and his preschool peers did the same when they were 3.

Yup...we could ALL learn a lot from them!

His classmates and friends are simply the kind of people I want to be like.  Selfless, kind, and beautifully caring.  Their families are the same way...seems like the apples don't fall far from the trees. :)

Then there are the teachers.

They ROCK!

He has some very special grown ups that he loves more than words can explain at that school. Each and every teacher he has ever had is now a part of his heart. He remembers each of them and comes running into their arms every single time he seems them. And he talks about his Principal every day too! And the secretaries (and the turtles in the office) and the custodian...adores them all!

He always has an aide with him during the day and those ladies are so special to us. He adores them as much as he loves us. They are family.  He asks for them every single day. He is absolutely, positively in love with them.  He has two new ladies joining his "family" this year and we are so excited to have them aboard as well!

Sooooo....when it was time to go back to school for the first day, he was excited and happy. He was pretty much giggling the entire morning while listing each and every person he was going to hug.

He could not have been happier when he walked into that building. You could FEEL he love he has for everyone in that school.

And..it is contagious.


While it was one of Braden's "best days ever", it was a hard day for mom.  I was SO very happy to see him beaming and exploding with excitement for his first day of school. I had tears when he saw two of his best friends and hugged them so hard I was afraid he might choke them! :)

I was so happy for him...

So grateful for the day...

Humbled that he GOT a first day of third grade...

In awe of God's grace for this gift...

And so very sad that it might be his last first day ever.

Remember, I'm a hopeful realist. I don't kid myself about what his cancer brings and I understand the reality, odds, and future we are all facing, but I am following Braden's lead and trying to just keep smiling.

He's still fighting...We are still fighting...we haven't given up and we do believe in miracles...

Right now you would have NO idea anything was wrong with him...other than he gets tired quicker thanks to the chemo.

That is no small gift. It is HUGE!!! We are still getting good time.

The mds had not progressed before he began his shots of chemo...that is the biggest blessing ever!! We have HOPE that the shots can keep it slowed down and buy us more quality time before he has to have a bone marrow transplant with donor cells.

That is frightening...it may not work, he may die during transplant, he may have horrific long term damage/effects from the chemo used for transplant when so many of his body systems are already compromised due to 5.5 years of treatment, or the neuroblastoma may come back if his OWN cells (which we will kill off) have developed an immune system that is keeping dormant cells quiet (and then we are in BIG trouble with the neuroblastoma)...

It's not an ideal situation with MANY bad things that could happen...

BUT...

It might work.

And it could CURE him once again.

That was not what we were originally told...no hope is what we were originally told, but our Doctors kept digging and researching and fighting.

And, yet again, we have been given a small glimmer of hope in what was a completely dark tunnel.

I cannot even wrap my head around how tremendous this blessing really is...

It's a glimmer...but WE HAVE A GLIMMER!!!

Thank you Lord!!

We are going to need another miracle.

It's that simple, it is going to take a miracle if he is going to survive to see his first day of fourth grade.

AND...

I believe in miracles!

Because I live with one.  Four years ago, they told us there was no known cure for his relapsing neuroblastoma but he's been in a second remission for 2.5 years.

So I managed to hold my tears back on Thursday...barely...and I had to make a quick, rude, and embarassing exit to get out of the school before I lost it, but I did it. Mostly. A few tears may have escaped...

cANCER didn't get that first.

Braden did.

We did.

His beautiful friends did.

His teachers, aides, and Principal did.

TAKE THAT cANCER!!!

He WON!!!

and cANCER lost!

Crapola...

Zach came home from school the other day and told me that one of his friends “shunted” him.

I was confused.

So I asked a few probing questions to try to figure out what that word should be… or to figure out if maybe I was missing some new 2013 colloquialism…LOL!

He said that he was at lunch with his group of buddies and that he was talking to one friend when another told him that he was “shunted” because he was talking to “him”.

It became clear…”shunned” was the word he intended. 

Ahhhhh….got it.  J

But I didn’t “get it”. I wondered why he had been shunned.

(And I wondered if this new friend had been watching The Amish Mafia on TLC because that is just not a word you hear that often, especially from a ten year old.)

So…..I asked him why he had been shunned for talking to his buddy. His friends ROCK…I love them, the “shunner” was fairly new to the group.

He said that the shunner was mad at him because he didn’t like his buddy and since he was talking to his buddy, he had been shunned.

I asked him what he thought about that and he said that he didn’t think it was right. That he shouldn’t have to not be friends with his buddy just because his new friend didn’t like his buddy.

I then asked him how he handled it. I was nervous…”What Would Zach Do?”

He said he told the new friend that he didn’t have to stop being friends with his buddy and that if he wanted to “shunt” him, that was okay with him but he wasn’t going to stop being friends with his buddy just because he didn’t like it.  He told him that he wanted to be friends with both of them, but if he didn’t like it he was sorry. 

I beamed with momma bear pride!  YESSS!!!!!

It was one of those moments that you sit back as a mom and think that you must have done something right. 

Since then, all is well and the boys are all friends again. That’s the beauty of boys! J

It made me think about ladies near my age group.  Reality TV is filled with grown up people showing behaviors like that every day. And it’s also in real life too!

It starts when we are kids, just like it started with Zach.

Girls spend much of their time proclaiming their coolness by putting down others, snubbing, judging, labeling, and spreading rumor and gossip about those outside of their group.

Okay…I actually think they even do that within their group, which is equally sad. 

We survive that life phase, but many of us are forever changed because of it. It shapes our personalities and, for some, defines our self worth. 

I remember believing that once I was a grown up, it would be over and wouldn’t happen again.

Wrong!

Apparently, those social patterns are solidified for many. And then our actions as an adult, reflect those learned behaviors and patterns.

So at 47, I still encounter mean females and drama. People worried about if I was talking about them behind their backs…did I do this or did I say that or because I did this that must mean that, or because I am friends with someone that they don’t care for, then I must not be their friend.

Seriously????

I don’t understand it, but it exists.

Wouldn’t it be easier if we could all just cut the drama and gossip???

I’m not sayng I don’t mess up, I do. And if and when I make a mistake that hurts someone, I apologize profusely (and mean it), and then work to repair the friendship.

The people I hang out with ARE that way. None of us “do” drama and we have zero tolerance for it. Not everybody likes me…and at my age, I’m now good with that. I used to not be good with that…but things change when you hit 40….and beyond. J 

I don’t have time for drama. Life’s too short…just too short to fill it with that kind of crapola, negativity, and nastiness.  And I feel very sad for those that don’t “get it”.

I was so happy when I found out that my son feels the same way and then acted on it.

SOOO very proud!

It’s one time that as a mom, I actually patted myself on the back.

My prayer is that he continues to hold those beliefs and back it up through actions, all his life.

Be kind, be loyal, and be fair.

It really is that simple.