What's It Going To Take?

Boys...

Toilets...

Seriously....

Can boys NOT aim better than that?!! :)

Really!!?

I love the males who live in my house.  I do!

But...honestly humans of the male variety, is it too much to ask for you to actually pee IN the WATER portion of the toilet, not ON the actual toilet;

or even NEAR the toilet??

This is NOT horseshoes.

Close does not count!

I've tried everything...I have suggested sitting...

Cause I figure that I sit to pee and somehow I always seem to make my target so perhaps it would be easier if they just sat?!

They claim they forgot to sit, "Sorry mom!" (insert eye roll and deep sigh from mom).

So I've tried making sitting mandatory.

They still forget.

(more eye rolling...

and sighing).

SO I actually put signs on the toilet seats saying, "remember to sit down!"

Yea...they got peed on.

(not kidding)

I've tried Cheerios as a target...let's make it fun, maybe it's about getting them to "play a sport"?

Nope.

Heaven FORBID that I walk anywhere near the bathroom door when the boys are peeing because they turn to see who is coming...

and every part of them turns.

And it's like a firehose....wooo hoooo...pee flying everywhere!!!!

It's a freakin' potty party!!!

I make them clean it up when they miss the target.

And every single time, they say, "ewww...this is sooo gross" and then miss their target the next time they pee.

Seriously???

I've tried yelling, bitching, grumbling, I've even tried just walking away shaking my head.

I've threatened that they will have to pee outside because I've absolutely, positively HAD it and they are so not going to have "indoor pee privileges" if they can't aim better than that.  They can pee in the yard...

In the middle of a blizzard...

Uphill...

Both ways...

They just giggle.

I'm at a loss.

I seem to be the only one in the house that actually cares whether or not they hit the toilet bowl instead of somewhere in the vicinity of the toilet.

I'm thinking now that I know where the word "pissed" comes from. I bet a mom invented it to describe her anger and frustration about toilet target practice....and lack of accuracy.

I'm considering setting up some wiring all around the bowl that will emit electric shocks should any liquid hit it.

Nothing that would cause real damage...

long term,

just a low voltage "reminder".

Kinda like a rubber band snap.  That's all.

Pretty sure after the first little "snap", they would see my point and maybe start squirting in the right place.

I bet accuracy would be 100%,

forever.

I'll wager that they would have concentration of steel when they peed then!

There's the next million dollar invention...

and it will be a mom who invents it,

a mom who buys it,

and a mom who grins with satisfaction when it snaps the first time.

I'm SO in!! :)

Just pee IN the toilet...it's a simple little request.

Why in the world is that soooo hard???

And for the record sons, your future wives will thank me.  Well...that is if you ever learn to pee IN the toilet.

I'm not too hopeful though.

So I will apologize now, sorry future daughters-in-law.

I tried!!! I really did!

I'm sure you will do a much better job with your sons.

And I'm sure it will be hilarious when they miss and I'm the grandma instead of the mom.

Most days I can hear my mom rolling in laughter in Heaven.

In the meantime, I'm going to have a glass (or ten) of wine.

Lord, give me strength....and patience!

:)

Princess Jamie...

When Braden was in treatment, and we were living at the hospital, he met a very special friend.

Her name was Jamie and she was a care assistant in the oncology clinic.  Jamie checked him in each visit (at that point in life, that was twice a week...at least).

Braden was not a very agreeable patient in the beginning. With the autism, everything was super confusing and scary to him.

He would cry and cry and cry.  I call it the childhood cancer cry. He was 3 years old, and even if he was scared and crying, my job was to hold him down while they did whatever procedures they had to do to him.

It sucked as much as you are imagining right now.

Blood pressure checks, weight checks, temperature checks, and height checks doesn't seem like a very big deal to you and me.

BUT...to a 3 year old with autism and tubies and a bald head...it was a HUGE deal.

Until Jamie came into his life.

Jamie didn't have any special education training. She hadn't been taught "how" to work with children with autism.  But we found out that Jamie was a master!

It was innate.  She just got "it" and she made everything right in Braden's world.

He WANTED to go to clinic, because he was going to see his Jamie. When we were at home, she was all he talked about. Braden's love for Jamie was very deep!

Every clinic visit, she would open the door and he would SPRINT into her arms yelling, "JAMIE!".  Every. Single. Visit.

Jamie let Braden push buttons he wasn't supposed to push, he learned to watch the baby on the thermometer to make sure it was working, he got to shoot the cover off the thermometer, he watched the numbers of the "squeeze" (blood pressure machine) to make sure they were going down and he was very quiet and still so he wouldn't scare them.

He had to give her about a hundred hugs.  And when he was inpatient, she used to come visit him on her lunch break. Yup...her lunch break!! AMAZING

Word would get to her if he was having a rough time and she would magically appear.  Her visits resulted in smiles and laughter no matter how sick he felt at the time. She always brightened his day!

Braden still collects the caps from the flushes and heparin tubes. It's his "thing". :)  When Braden was inpatient for transplant, Jamie brought him a whole jar filled with caps. He was more excited about that than I could ever tell you!! His whole face lit up and he squealed with delight!!

I think most kids loved Jamie as much as Braden did, she was a keeper!! ALL of the staff in the oncology clinic at CMH are keepers! We ADORE all of them!! REALLY!!

Braden is a great judge of character. He either really likes you or really just doesn't care if you are around or not. From the first moment he saw Princess Jamie, he loved her!!

Truly and deeply!

Princess Jamie got married and now has two babies. She isn't at clinic anymore because she is taking care of her family, but we have play dates with her occasionally.  He still flips out every time he sees her.

All she did was love him.  That was it.  She just loved him. And in return, he loved her more than any words could ever describe. Princess Jamie got him through his cancer treatments and will always be his first love.

Mom loves her too!!

For me, the lessons I learned from Princess Jamie are to:

love unconditionally,

understand selflessly,

and act with affection and grace every day.

Princess Jamie, we love you!!

Priorities...

Last night, it occurred to me that Zach (our ten year old) really has no idea what our foundation does.

Not quite sure how I missed describing that piece to him! :)

He knows I work all the time, and that I'm gone a lot in the evening, and that I spend tons of time on the computer and on the phone, etc. but he really doesn't know what I'm doing other than "mom's working".

So I talked to him about what we do and about the $100,000 grant we got to give away to a doctor to find treatments for kids with cancer.

And the cynic in him said, "Mom...you realize you can't save all kids with cancer, right?"

Yea...he's 10....and he sounded like a grandpa of 90. :)

I told him a story that I had read in Chicken Soup For The Soul one time, many moons ago, about a man walking along the beach picking up starfish and throwing them back into the ocean.

There were hundreds. A man passed him and asked why he was doing it, there were too many and he couldn't possibly make a difference, he couldn't save them all.

The man threw another into the ocean and said, "Made a difference to THAT one."

I told him I knew I couldn't save every kid with cancer, but I wanted to try to do something to make a difference in some way for a few if not all.

The alternative is to do nothing and just allow children to die from these diseases without even trying. And I can't live with that.

I asked him if he remembered going to Jayden and Harley's funerals. If he remembered looking at their small bodies in their caskets.

He said that he did.

I told him that I didn't ever want any other families to have to put their children in a casket and kiss them goodbye until they meet them in Heaven. That I didn't want any other child to have to die when they should be playing and laughing. 

I told him it wasn't right and it wasn't fair and although I know I can't save every child with cancer, if I can have a hand in making even a small difference for another family, it is worth it to me.

He then asked the tough question, he asks it occasionally.

"Is Braden going to die too?"

I've never lied to him...and I never will.

I told him that I didn't know.

I promised him that I have fought for no child any harder than I fought for Braden and that right now we had Braden doing a medicine that seemed to be working, but I couldn't promise that he wouldn't die from cancer, or anything else for that matter.

I know his little body has had too much treatment and it's all been highly experimental.  We've bought time...how much I don't know.

He asked if the $100,000 we gave away will result in a treatment Braden can get to save his life.  I told him no and then I explained the trial the doctor would be doing and how it was not going to be something that could help Braden but would help hundreds if not thousands of other kids with cancer if the doctor is right.

He thought for a very long time and then I asked him how he felt about me doing all of this foundation business.

He said he thought it was good.  I said, "think it's good?" and he said, "yea...sometimes it's weird though."

I asked how.

And he said, "well, it's weird that you have to work all day and all night and don't have time to play with us. and it's really sad to think that after all of this, Braden could still die. I think it's great it's helping other kids but I wish it could help Braden too."

He's right about the too much working and not enough playing thing. That hit me like a ton of bricks to the face.

There was no comeback on that one. It's 24/7/365. For good reason...Jayden and Harley for starters. 

This job of mine is all consuming. It takes every hour, minute, and thought I have and it is worth it, but I have to find a balance.

Seems I have fallen in to the same trap I thought I had learned to avoid! I used to work nonstop when I was employed!  I've never worked more hours than I'm working now, and I used to work a LOT.  I suppose this is just my "gotta do my best" personality hard at work.

I thought I had learned not to fall into that trap after Braden was diagnosed. But slowly, as Braden has been healthier, I've let it creep in and suck me in to "obsessive mode" again.

And I didn't even realize it until last night!

Dang!!

I think the fact that this work is about trying to save the lives of children, I've put extra emphasis on just working more and more to make a bigger difference.

I have to stop doing that. My kids are still the number one priority and I haven't been treating them like they are.

Dang again!!

Stupid cAncer! Even in trying to fight you, you were winning!

So Zach and I created a plan for balance. He was falling asleep as I asked him how he felt about that plan.

He whispered, "good".

And then said, "I'm proud of you mom. Keep saving starfish!"

I said, "I will buddy, and I will do a better job of keeping my focus on the two most important starfish in the world...you and Braden".

His response was in a whisper again, "I love you mom!"

"I love you too Zach."

Sometimes it takes the wisdom and heart of a ten year old to whack you in the face and remind you of what really matters!

OH....

And cancer...I'm not going to slow down or back down one bit...I'm still coming after you full force!! I'm just going to take some time off in the evenings to love on my boys!

I have my priorities straight again. 

Hey cAncer....Take THAT!!!!  

Thanks for the therapy session Zach!!

Kids do the darndest things...

The other day, I was in a second grade classroom, not my son's...in another district.

The teacher was using what is called an "Assertive Discipline Plan". Individuals earned fake money for following the rules, teams (each table group of kiddoes) earned points the same way. Apparently to turn dollars and points in for privledges and prizes. And they lost the points and money if they had a "oops" moment. Incentive to not have "oops" moments. :)

When one of the kiddoes would get a compliment from the teacher, the teacher would ask if the child would rather have a "dollar" or a team point.  The kids would then choose which one they wanted, and they almost always chose "team point" which always resulted in fist bumps and smiles from their whole team!

One ADORABLE, and quiet, little girl got to make that very choice and she chose,

team point.

YAY!!!

The little freckled, red headed boy across from her smiled and said "thanks" and held his hand up for a high five.

The little girl kind of backed away and shook her head, no.

The little cutie pie was even more insistent now that she give him a high five so he got closer and even more "celebratory"...

She quietly shook her head no.

Odd, I thought. Wonder what the story is there?

And just then, the little boy reached up and...

picked his nose and wiped it under his desk.

Problem solved.

Wise choice little girl!!

Yup...kids do the darndest things! :)

And I giggled for about an hour.

Zachism, College...

This morning, we were all laying in bed together, with the cat, and Zach said that when he went to college, he would not be able to take Indy with him.

I asked him why not and he said, "because I will be at college mom!"

Hmmm...hoping that wasn't foreshadowing of too much time spent partying...and instead was because he was going to be studying. (A mom can hope)

SO..I said that he should do what Shawna's boys did. Shawna was their babysitter while I was working. And as far as the boys are concerned, they are part of their family to this day.  She was AMAZING and we all loved her and her whole family tons!!

I told him that her two oldest smartly lived at home for the first two years of their college education and that would save a lot of money and be fun. (Again, a mom can hope)

He got a really happy face and in a super excited voice said,

"You mean I can live with Shawna??"

The blonde runs strong with that one. :)

So Shawna, be sure to save a room for Zachy, he's moving in in just a few years!!

I wish you well with that!! LOL!!

Camping...

Braden just had scans in Philly...

and he did well and the results continued to show no evidence of disease!!

That is really no small sentence...it is really miraculous!!

Every scan, I hold my breath and pray.

This time, we found a penny early on. Braden was watching cartoons on a television in the airport in Chicago. He walked over, handed picked it up and handed it to me, then went back to cartoons.

I felt so much better!!  If you are confused, check out the "Pennies From Heaven" post I did on January 18. :) http://deliecehofen.blogspot.com/2013_01_18_archive.html

 And then there was the sunset view from our window the night before his scan. I could almost feel our angels smiling! WOW!

Dr. Mosse gave us the great news and we were off to the airport. Happy DAY!!! Nothing really upsets me after a good news day. It's all about perspective...

Seriously!

Nearly every visit since his first clear scan, we've had a problem getting out of Philly. Blizzards, hurricanes, flooding, plane mechanical problems, flight crew not there, you name it.  Almost every single time. We just expect it now! :)

This time did not disappoint.  Our layover was in Chicago.

Just a few minutes before we were to board the plane, they came on to tell us our crew wasn't there yet. As she was speaking they appeared.  Whew!! I figured this one was going to be easy, false alarm!

We boarded the plane and the captain got on the intercom with "news".

He said Chicago was not allowing any flights in or out due to weather.  BUT...he said we could deplane and then just hang out in the terminal close by. 

That sounded GREAT to me!! It was going to be an hour before they had an update.

An hour turned into 2...plus...people were lined up for a LONG distance trying to make arrangements for missed connections, etc.

Braden and I played hide and seek. It was WAY more fun.  That giggle is the best sound EVER!

I figured that if there were problems with getting in and OUT of Chicago, our connecting flight would likely be delayed too and there's an hour difference between Philly and Chicago, so we might make it. And if we didn't...who cares???

I got on my cell phone and sent some texts and my amazing friends had me covered with Zach in about 2 minutes!! I'm SO blessed to know such incredible people!!

Then they came on the intercom and weren't sure we were getting out, so I started looking for rooms in Philly...and two minutes later, we were boarding.

LOL!

We got to Chicago...okay, it was a "tad" bumpy but we've had worse and we were only 15 minutes passed our scheduled departure. The airport was a zoo...complete and total zoo!!

We checked the info to get our gate number and found out our flight had been cancelled.  Oh well. At least we weren't late!! :)  We headed to the gate to rebook.  The moving sidewalks became a challenge for Braden who tried to pass every single person on them...mom was panting like a dog by the time we were done. That boy can move when he wants to! :)

On our way, half of the US Navy along with a whole unit of bagpipers lined the hallway.  We were in a hurry but Braden wanted to watch the "parade".  We watched and walked slowly...nothing was happening yet but they were obviously waiting for something/someone to come off that plane.  I was curious. Hmmm.... But I knew we needed to rebook and if those bagpipes started, Braden would FREAK out!!

The kid with the severe hearing loss due to chemo cannot handle loud noises.  He cries and cries and it's absolutely heartbreaking!! Poor guy...so we zipped fairly quickly.

We made it to our gate, got rebooked, and then tried to get a room but everything was full close to the airport. Our flight was at 6 and it was already about 10:30. Not long...easy peasy!

The lady told us they were setting up cots.  Ugh...but worth a look. Already I was cringing with the thought of all of those germs...MAJOR germaphobe here!!

As we were making our way to the cot area, we saw the navy parade happening, but the bagpipes were gone. I was really curious now. They were escorting a long line of people individually through a corridor of navy sailors.

Hmmm again.

We walked over to watch the parade and realized it was actually an entire plane of WWII veterans they were escorting.  I don't know where from or where to but it was so cool.  MANY passengers were lined up and clapping for the men who were being escorted in wheelchairs (some were walking) as the sailors saluted along the perimeter of their path.  Braden and I clapped for them for about 10 minutes, we tried to leave but he wanted to stay and watch more of the parade. He saluted just like the sailors. It was priceless!!

I had tears. It was just beautiful to see those men waving at the crowd and smiling. They were so very proud and happy.  Just awesome!

After the parade, we did make it to the cots.  They weren't horrible looking, but still...germs!! We picked the only two left that were near an outlet. I put the blankets down over the cot, they were clean and then covered Braden with his penguin blankie from home.

Airport rule #1...he who controls the outlet, rules the airport terminal world!! Especially when there are only 2 in the hallway with the cots. LOL!  Many came after and many coveted my outlet, but alas, it was taken.  So sorry poor friends.... :)

Having staked my claim, I decided to put the blanket on the cot and push the cots together so I would be right beside Braden.  My greatest fear was that he would wake up while I was asleep and he would wander away out of curiosity...looking for that parade again! I knew I would not be sleeping, but I hoped he would.

I stashed everything of value (my phone and the iPad in my backpack at our heads and then squished our cots against it so no one could take them.  That...and we were directly across from the security desk...it was pretty safe!!

If you've ever had the pleasure of sleeping in an airport on a cot...okay admittedly overuse of the word "pleasure"...you already know that they don't dim any lights and they don't put you in an area where people aren't marching through...hey wait a minute...it was an all night parade!! :) Lucky us!  Braden would just close his eyes, and somebody would come through with the vaccuum truck, or trash cans, or security people walkie talkies,  or security people laughing and giggling.

My "favorite" was my fellow stranded passengers who were clearly upset that they were stranded passengers. 

One lady parked it right next to me at about 2 am, she used the f-bomb about 4 times (which I can appreciate except I had an 8 year old with me). I looked at her and gave her the look. She grimaced at me and I pointed to Braden who was now wide awake.  She apologized but kept right on bitching out loud, just stopped with the f-bomb.  I asked her if she could bitch quietly so she wouldn't wake up my son.  She was not amused and changed the bitching to loud sighing.  

I think I preferred the bitching.  

I echoed her sighs each time she let one roar, which annoyed her...and made me giggle.  

Then there was the lady who came in with two adult children and began screaming at the top of her lungs to tell them which cots to take.  Woke him up again. I gave her the look and the daughter cringed.  The mom glared at me. I glared back. I don't think she wanted to try a "glare down contest" because she had them all get their stuff and move to another area.  I didn't realize why until 4:30 am when I finally got to see myself in a mirror.  Yup...I would have been scared too. :)

It was raining so hard!! I mean REALLY hard!! And at 4am, the security people all assembled 10 feet from our cots and had a security team meeting. It was very official.  LOL! They were placed on a higher alert level because of potential flooding.  

I know this because I was pretty much in the meeting.  ;)

I know a lot of other top secret security team meeting information.  I could tell you, but we were all sworn to secrecy. :) Needless to say, my faith in our security systems at the airport dropped a few...a lot...of points!

Three of the security guys were laughing really loudly and saying, "Yup..wake up people, it's your 4 am wake up call! Your security team has a meeting. You can't sleep here anymore." 

Hahahahahahahaha....

Braden woke up, again, and was very groggy and confused.  He had slept about an hour, and on and off due to the noise the remainder of the time. The night before he slept for about 5 hours because I have to keep him up late and get him up early so he will sleep during scans without big sedatives, just IV Benedryl.  

And I hadn't slept at all, and had about 5 hours over 48 hours.

I was not amused by their stupidity and rudeness.  And, again, in my defense 5 hours in two night..total. My filter had slowly disappeared during the night and now Momma Bear was raging.

So it occured to me that I should tell them what I thought about their rudeness and stupidity.  Then I remembered they were security and could keep me from boarding the plane...

and then I remembered I was already in the terminal and I really didn't give a shit because of the filter loss.

SO...I walked the whole ten steps over to them.  And I explained why that particular remark was not amusing. I pointed to my confused and exhausted son who had just had cancer scans.  Braden was in tears because he was tired and in his words, "I'm done...".

The supervisor dude in the fancy suit walked over to see why I was bitching at the three dudes so I explained.  Then walked away.

Then it was HIS turn to give them the look.  

They didn't seem so cocky and amused any more.

I can't tell you what I was thinking...it's top secret. But it involved my first real laugh in hours! 

I gathered up our stuff, Braden, his tigers and his blankie and headed to the gate.  It couldn't be louder or more annoying.

It was still raining REALLY hard and there were lakes of water on the runways and in the grass. I wasn't convinced we were going anywhere, anytime soon.

We did get to board the plane, pretty much everyone on the plane was exhausted BUT at last, we were going home. 

And then the captain came over the intercom.

Oh shit!

He said, "folks...we have some news about our departure."

Every single one of us needed a button, right then.

He told us something, I don't even remember what, but it wasn't that we weren't going to leave.  WHEW!!!

We made it home and all was well. If you ask Braden, he will tell you he had a GREAT time camping!! 

I am not a camper.  :)

That boy loves everything!! 

Got lemons???  Let Braden at 'em!! :)  

TAKE THAT cANCER!!!

Zachism Saturday, "The Prayer"...

When Brian is out of town, the boys both sleep with me in our bed.

The lights were off and it was very dark in the room.

Zach said his prayers and after, we were practicing the Lord's Prayer.

He began on his own with,

"Our art-ther, who fart in Heaven"...

The best part...

He didn't even catch it, he just said, "wait...it's our father who art in Heaven"

Braden, who was next to me, said, "mommy...why are you shaking?"

Silent hysterical laughter will do that to a mom.