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!
Thursday, January 17, 2013
Sunday, January 13, 2013
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! :)
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, January 12, 2013
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!!
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!!
Friday, January 11, 2013
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! :)
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! :)
Thursday, January 10, 2013
Sundogs...
I had never seen a sundog before...
until one day right after Miranda died.
I was at the park, sitting at a fishing pier watching the late afternoon sun,
thinking about Miranda and sobbing because she was gone.
My arms were empty and so was my heart.
There is no pain greater than losing a child...no task harder than burying your child...
nothing more awful than having your child hemorrhage, convulse, and die in your arms,
and then living without your child every single day of your life.
Nothing!!
I simply couldn't get a grip on my grief.
And I was at the park, looking at the sky, crying and begging God to show me a sign that she was in Heaven safe and that she was safe and happy.
I had done that before.
After my mom died from brain cancer in 1984, my senior year of high school.
I was driving my car along the highway and it hit me like a ton of bricks...
I was sobbing and begging God to show me a sign that she was in Heaven and that she was happy.
And...
A rainbow appeared front and center in my windshield.
Now I was laughing and crying.
My mom was in Heaven and she was happy!
So that day after Miranda died, I sat again and...
I looked up and saw my very first sundog.
It looked like a tiny rainbow to me, I had no idea what it was...I just thought it was a baby rainbow and to me,
that meant that my mom had her and was taking care of her in Heaven.
I had asked her to do that, and
I told Miranda to look for my mom as she was dying.
Let me back up a bit...
When I was 17 weeks pregnant, my water broke.
I was 35 years old and they recommended I have an amniocentesis so we would be prepared should there be any genetic disorders.
Sounded good to me...I have a strong need to be prepared and ready to go from day #1!
Well three days after the procedure, my water broke which is very rare,
and it did not reseal,
and that is even more rare.
Somehow I can get in those types of "very rare" lines quite easily but when it comes to the winning the lottery rare line...not so much! :)
The doctors told us there was less than a 10% chance that she would survive and that we should strongly consider terminating the pregnancy.
I told them that it was not my choice to make, God would decide.
I spent a month on strict bedrest at home,
My friends and Brian took GREAT care of me!!
I have been SO very blessed with so many angels on Earth!!
My friends are my family! I'm the luckiest person in the world to know such amazing people!!
When my pregnancy was considered viable, I got to be admitted to the hospital.
and I spent 1.5 months there and again my friends came to visit frequently to lift my spirits and bring me hope!
I LOVE these people!!
I knew the reality we were facing,
But I had HOPE that she could be that one that survived.
On July 31, 2001, one of the veteran nurses came in and told me that her vitals were declining and she thought she would have to be delivered by c-section soon.
She asked me if anyone had told me what would happen during a c-section and I said no.
Then she told me all about it, patted my leg in a motherly way, and walked out.
I sat there quietly for a very long time, letting it sink in.
And I prayed the same prayer I had said since my water broke on May 25, 2001, PLEASE God, let her stay...I don't want her to die!
I do not cry in public. At least I try not to. So eventually I went into the bathroom and closed the door and ran the shower so no one could hear me,
and cried until I didn't think I could cry anymore.
And I finally prayed the prayer my heart knew I had to pray...
Please God...keep her safe...please don't let her be in pain even if you have to take her to Heaven to do it.
That was the hardest prayer I have ever had to say but I meant it from the depths of my soul.
I wanted her to be happy and safe and not have to be in pain.
Heaven is the ultimate reward, not a punishment for the person earning their wings.
It SUCKS for the people left behind!
And in just a couple of hours, the nurses came back in and told me that I needed to call Brian and they were going to deliver her.
It was as though God patiently waited for me to "get it", to understand.
The neonatologist had told me that my first sign about how she was doing and if they thought they could do anything to help her fight, would be whether or not they rolled her out of the room to try to intervene.
If that happened, they thought she had a chance, if not...
they would hand her to me and let me hold her.
She was born..no cry, her lungs hadn't developed enough for her to be able to breathe on her own due to the lack of amniotic fluid in the womb while she grew.
They took her over to check her out and Brian went with them. I couldn't see anything.
And no one said anything. It was silent except for the distance mumblings of the doctors working on Miranda.
I laid there, shivering, with silent tears running down my face,
Then, they rolled her past me....
I smiled...that was hopeful...they were going to be able to try to save her...
and then I caught the eye of the neonatologist...
and I knew.
I had to go to recovery for an hour and during that time, Brian got to go see her and the one little piece of video we have of her is of her opening her eyes to look at him.
I never saw her eyes in person but they were sparkling blue and she had beautiful blonde hair...and it was even curly at her sweet little neck.
She weighed 1 pound 9 ounces and she was the most gorgeous baby in the world!
When they finally rolled me in to see her, I had to lie flat and I couldn't see much other than the oscillating ventillator, the thousands of tubes and lines, and warmer.
I asked them if I could hold her and they moved my bed right beside her and put her on me so that her head was on my shoulder and I was cuddling her.
She was so small!!
They asked us what name we wanted to give her and we picked Miranda Grace. Miranda was a name we liked and Grace was my mom's middle name.
As Miranda spent her 15 hours with us, we told her about her kitty Cosmo and all the people that loved her here on Earth.
I told her my mom was in Heaven and that she should look for her because she would take care of her. And her Uncle Phil (Brian's brother) would be there to help too!
Miranda fought so very hard...she tried to stay.
I remember when I told her it was okay for her to go, that she didn't have to fight to stay anymore.
I had rubbed my belly for 2.5 months while on bedrest. It had been just me and Miranda. I felt her move and kick. I talked to her all the time and for that entire period, I had repeatedly told her that when she was born she would have to fight and that I didn't want to lose her.
And that I loved her.
As I told her she could go, and kissed her beautiful little head, she slipped away. I knew when her heart stopped, not because of a monitor (they had unhooked it) but because I could feel it in my mommy heart.
And then my heart shattered into a million pieces.
I have never cried so hard nor been so sad.
The pain was indescribable and I only knew her in person for 15 hours.
No parent should ever have to bury a child.
All of these experiences are the reason we have fought so hard to give Braden HOPE for more time and why we started the foundation so no other children have to go to Heaven and no other parents have to bury their children.
Too many of our friends have had children that earned their angel wings and it's not okay.
We never say our heroes lost their battle to cancer...they EARNED their angel wings..
cAncer didn't win...God did.
So that day when I saw that first sundog, I started laughing and crying.
I could see my mom smiling...I could feel her love and I could feel Miranda's happiness!
Sundogs have always been my sign from Miranda Grace that she is smiling at us and sending us HOPE! And rainbows have always been my sign from my mom.
I see them at the most important times in my life, the times when I really need a hug from my mom and Miranda.
Braden has scans in Philadelphia next week.
I have major scanxiety!!
MAJOR!
Every parent of a child with cancer does,
Every time scans come around!
Twice now, we have been surprised with cAncer's appearance and reappearance on a scan when we weren't expecting it.
So yesterday, as I was driving home from picking the boys up from school, I looked up and saw a sundog. I noticed the tiniest one in the sky to the left (you will see the bright spot between two trees, you can't really see the rainbow in this picture but there was a lot of pink...there always is).
I smiled and said, "love you baby girl".
The boys are used to it by now and Zach usually says hello to his sister when we see one!
I drove a little further and looked again and noticed it wasn't just a small sundog...it was a full circle around the sun.
Love you mom...thank you for holding my sweet baby until I get there!
I never doubt that our angels are watching over us and protecting us every single day.
And I am grateful when they send me a hug from Heaven!!
TAKE THAT cANCER!!
until one day right after Miranda died.
I was at the park, sitting at a fishing pier watching the late afternoon sun,
thinking about Miranda and sobbing because she was gone.
My arms were empty and so was my heart.
There is no pain greater than losing a child...no task harder than burying your child...
nothing more awful than having your child hemorrhage, convulse, and die in your arms,
and then living without your child every single day of your life.
Nothing!!
I simply couldn't get a grip on my grief.
And I was at the park, looking at the sky, crying and begging God to show me a sign that she was in Heaven safe and that she was safe and happy.
I had done that before.
After my mom died from brain cancer in 1984, my senior year of high school.
I was driving my car along the highway and it hit me like a ton of bricks...
I was sobbing and begging God to show me a sign that she was in Heaven and that she was happy.
And...
A rainbow appeared front and center in my windshield.
Now I was laughing and crying.
My mom was in Heaven and she was happy!
So that day after Miranda died, I sat again and...
I looked up and saw my very first sundog.
It looked like a tiny rainbow to me, I had no idea what it was...I just thought it was a baby rainbow and to me,
that meant that my mom had her and was taking care of her in Heaven.
I had asked her to do that, and
I told Miranda to look for my mom as she was dying.
Let me back up a bit...
When I was 17 weeks pregnant, my water broke.
I was 35 years old and they recommended I have an amniocentesis so we would be prepared should there be any genetic disorders.
Sounded good to me...I have a strong need to be prepared and ready to go from day #1!
Well three days after the procedure, my water broke which is very rare,
and it did not reseal,
and that is even more rare.
Somehow I can get in those types of "very rare" lines quite easily but when it comes to the winning the lottery rare line...not so much! :)
The doctors told us there was less than a 10% chance that she would survive and that we should strongly consider terminating the pregnancy.
I told them that it was not my choice to make, God would decide.
I spent a month on strict bedrest at home,
My friends and Brian took GREAT care of me!!
I have been SO very blessed with so many angels on Earth!!
My friends are my family! I'm the luckiest person in the world to know such amazing people!!
When my pregnancy was considered viable, I got to be admitted to the hospital.
and I spent 1.5 months there and again my friends came to visit frequently to lift my spirits and bring me hope!
I LOVE these people!!
I knew the reality we were facing,
But I had HOPE that she could be that one that survived.
On July 31, 2001, one of the veteran nurses came in and told me that her vitals were declining and she thought she would have to be delivered by c-section soon.
She asked me if anyone had told me what would happen during a c-section and I said no.
Then she told me all about it, patted my leg in a motherly way, and walked out.
I sat there quietly for a very long time, letting it sink in.
And I prayed the same prayer I had said since my water broke on May 25, 2001, PLEASE God, let her stay...I don't want her to die!
I do not cry in public. At least I try not to. So eventually I went into the bathroom and closed the door and ran the shower so no one could hear me,
and cried until I didn't think I could cry anymore.
And I finally prayed the prayer my heart knew I had to pray...
Please God...keep her safe...please don't let her be in pain even if you have to take her to Heaven to do it.
That was the hardest prayer I have ever had to say but I meant it from the depths of my soul.
I wanted her to be happy and safe and not have to be in pain.
Heaven is the ultimate reward, not a punishment for the person earning their wings.
It SUCKS for the people left behind!
And in just a couple of hours, the nurses came back in and told me that I needed to call Brian and they were going to deliver her.
It was as though God patiently waited for me to "get it", to understand.
The neonatologist had told me that my first sign about how she was doing and if they thought they could do anything to help her fight, would be whether or not they rolled her out of the room to try to intervene.
If that happened, they thought she had a chance, if not...
they would hand her to me and let me hold her.
She was born..no cry, her lungs hadn't developed enough for her to be able to breathe on her own due to the lack of amniotic fluid in the womb while she grew.
They took her over to check her out and Brian went with them. I couldn't see anything.
And no one said anything. It was silent except for the distance mumblings of the doctors working on Miranda.
I laid there, shivering, with silent tears running down my face,
Then, they rolled her past me....
I smiled...that was hopeful...they were going to be able to try to save her...
and then I caught the eye of the neonatologist...
and I knew.
I had to go to recovery for an hour and during that time, Brian got to go see her and the one little piece of video we have of her is of her opening her eyes to look at him.
I never saw her eyes in person but they were sparkling blue and she had beautiful blonde hair...and it was even curly at her sweet little neck.
She weighed 1 pound 9 ounces and she was the most gorgeous baby in the world!
When they finally rolled me in to see her, I had to lie flat and I couldn't see much other than the oscillating ventillator, the thousands of tubes and lines, and warmer.
I asked them if I could hold her and they moved my bed right beside her and put her on me so that her head was on my shoulder and I was cuddling her.
She was so small!!
They asked us what name we wanted to give her and we picked Miranda Grace. Miranda was a name we liked and Grace was my mom's middle name.
As Miranda spent her 15 hours with us, we told her about her kitty Cosmo and all the people that loved her here on Earth.
I told her my mom was in Heaven and that she should look for her because she would take care of her. And her Uncle Phil (Brian's brother) would be there to help too!
Miranda fought so very hard...she tried to stay.
I remember when I told her it was okay for her to go, that she didn't have to fight to stay anymore.
I had rubbed my belly for 2.5 months while on bedrest. It had been just me and Miranda. I felt her move and kick. I talked to her all the time and for that entire period, I had repeatedly told her that when she was born she would have to fight and that I didn't want to lose her.
And that I loved her.
As I told her she could go, and kissed her beautiful little head, she slipped away. I knew when her heart stopped, not because of a monitor (they had unhooked it) but because I could feel it in my mommy heart.
And then my heart shattered into a million pieces.
I have never cried so hard nor been so sad.
The pain was indescribable and I only knew her in person for 15 hours.
No parent should ever have to bury a child.
All of these experiences are the reason we have fought so hard to give Braden HOPE for more time and why we started the foundation so no other children have to go to Heaven and no other parents have to bury their children.
Too many of our friends have had children that earned their angel wings and it's not okay.
We never say our heroes lost their battle to cancer...they EARNED their angel wings..
cAncer didn't win...God did.
So that day when I saw that first sundog, I started laughing and crying.
I could see my mom smiling...I could feel her love and I could feel Miranda's happiness!
Sundogs have always been my sign from Miranda Grace that she is smiling at us and sending us HOPE! And rainbows have always been my sign from my mom.
I see them at the most important times in my life, the times when I really need a hug from my mom and Miranda.
Braden has scans in Philadelphia next week.
I have major scanxiety!!
MAJOR!
Every parent of a child with cancer does,
Every time scans come around!
Twice now, we have been surprised with cAncer's appearance and reappearance on a scan when we weren't expecting it.So yesterday, as I was driving home from picking the boys up from school, I looked up and saw a sundog. I noticed the tiniest one in the sky to the left (you will see the bright spot between two trees, you can't really see the rainbow in this picture but there was a lot of pink...there always is).
I smiled and said, "love you baby girl".
The boys are used to it by now and Zach usually says hello to his sister when we see one!
I drove a little further and looked again and noticed it wasn't just a small sundog...it was a full circle around the sun.
Love you mom...thank you for holding my sweet baby until I get there!
I never doubt that our angels are watching over us and protecting us every single day.
And I am grateful when they send me a hug from Heaven!!
TAKE THAT cANCER!!
Tuesday, January 8, 2013
Girl Meets Boy...
This crazy kitty has reduced my 200 pound, "manly man" husband into
a baby-talking marshmallow!
It's adorable!! He will frown at me for saying that, but it is.
This morning, Braden was eating his chicken (yes, chicken nuggets for breakfast...it's a protein and calories...you do what you can do when your child has autism AND is taking chemo).
(yes, he's officially showing no evidence of disease on his scans, and yes he is still doing chemo...I'll explain that one another day.)
He was watching a movie on a portable DVD player and the kitty smelled the chicken.
Indy thought it smelled pretty good so he went over to stick his nose in it and get a whiff, hoping to snag a piece I'm sure!
Braden started giggling and said, "No kitty, dat's MY chicken!"
to which Brian whined, "No kitty, that's MYYYY pot piiiiie!"
If you get that, I know what "cartoon" you've been watching!! ;)
I cracked up.
But, I laughed harder yesterday morning when I wrote "vet" on a "to-do note" so I would remember to schedule Indy's first vet appointment (with our former next door neighbor Dr. Pelfrey at Stanley Vet Clinic...he's AWESOME and no, that wasn't a paid advertisement, just the truth!!).
I looked at the note a little later in the morning (almost shocked to see it lying on the counter...I had forgotten all about it five minutes after I wrote it),
btw, this is why I write myself notes.
I'm the same person who used to have to take a sticky note with my destination written on it with me in the hall at school when I was a Principal because I would get stopped so many times, I would forget where I was going and have to come back to the office with my head hanging and ask the secretaries where I was headed!
I digress...
that'll happen a lot in this blog! :)
SO I looked at the note, and noticed Brian had added letters to it.
Now it said, "Corvette".
I busted out laughing.
This is why I love him so much...he's funny and witty and clever!!
I'm one lucky girl...
Most days!
So how in the world did we meet??
It's simple...all I had to do is buy a house!
I had won a teaching award that came with a $25,000 check...AWESOME!
And I had just moved to Kansas City from a small town in Central Kansas called Hays...LOVE that town!!
I had just been hired to be the Assistant Principal at a middle school (I was only there for a year and then accepted a job as Principal at an elementary school after that). I loved the middle school kids---they are hilarious!! And I loved the elementary school kids--they are sweet!!!
I had a down payment and I wanted to buy a house that would be my very own!! I had been divorced for a little over a year and was ready to independently nest!
Oh...and I had SWORN OFF MEN!!!
I'd dated...the pool was shallow...and frankly, I was over the experience!!
(insert eye roll and sigh...two sighs...and another eye roll)
A very dear friend and I drove all over Kansas City with a realtor looking at houses and I could never find "the one".
We looked at MANY houses.
After we looked at another one, we pulled to the end of the cul-de-sac to turn around and saw an unfinished house with a for sale sign that looked promising from the outside.
Unplanned, unforseen....spur of the moment decision....we stopped and went inside.
and I LOVED the floorplan but it was just at a drywall stage.
We called the builder, Larry Lochner, and he told us there was a finished version across the street so we could see what it looked like when it had paint and finished floors.
So, we met the homeowner the next day and walked through his house. I LOVED the house even more....
And...I noticed the owner...cute guy, and I was guessing he was single by the stereo on boxes that made up his stereo cabinet and vacuum cleaner in the middle of the living room.
And when we walked out of the house, I told my realtor, "Cute neighbor guy...buy that house!!"
And I did.
The cute neighbor guy was Brian and the builder was one of his best friends, Larry.
I met the rest of the neighbors immediately and loved them...they were all awesome!!
Brian knocked on my door a day after I moved in to say hello (I had said hello to him outside SEVERAL times) and asked if he could do anything to help.
I had already hauled the boxes to the basement, the pictures were on the wall, everything was set up and looking great...nesting had occured...
but I needed to think of SOMETHING so he would come in and I could talk to him some more....okay, the possibility of flirting had crossed my mind!
SO, I thought quickly...
It was the end of June in Kansas...
I told him that the upstairs of the house was too warm and I needed to adjust the damper on my AC, but I didn't know where it was...and that was true. I knew that was what needed to be done, but I didn't have a CLUE how to do it.
He helped me fix it and we got to chat a little...and he got to see my obsessive need for organization and neatness from the very first moments.
He was shocked and surprised my house was decorated already!
No stereo on boxes for this girl!!!
Well, we saw each other across the cul-de-sac and waved hello several times when FINALLY, five days after I moved in, I went out to run (I was running a LOT at that time in my life) and ALL of the neighbors were sitting at the end of someone's driveway drinking beer.
AWESOME!!!
I KNEW this was THE neighborhood!!
So I went for my run and when I got home, they were still there so I did the only neighborly, logical thing...
I stopped and drank beer!
It got late...so we moved inside one of the neighbor's houses...
It got later, and the homeowners wanted to go to sleep (unplanned, party lightweights) so the remaining bunch of us did the only logical thing...
Moved to another neighbor's house.
And we danced and laughed and had a couple beers (okay, okay...three beers... give or take a few cases...) until it was...
6:00 AM.
THIS NEIGHBORHOOD ROCKS!!!!!!!!!!!!!!!!!
At that point, we all went home and a little later, Brian called me and asked if I wanted to go to lunch.
Of course I said yes, and this time I KNEW I wanted to flirt. :)
We had lunch at a bar and grill and he explained what he did for a living using the sugars, salt, and pepper.
Seriously!
I got a good giggle and I've been laughing since then...
Well, most days. ;)
It's our very own version of a fairytale...once upon a time, I bought a house....
and got a baby-talking, marshamallow husband!
Luckiest girl in the world...
In fact, Brian and I wrote our own wedding vows to each other and I turned this story into a "FairyTale" format. I had my step-mom bring me a book I had scrapbooked, and I threw open the first page and read, "Once Upon A Time..."
Brian in his smart ass way, rolls up his tux sleeve and looks at his watch like "how long is THIS going to take..."
And I said, "Relax, You've got time!!!"
Even the Preacher laughed...
but no one laughed harder than when I finished.
Brian took a hanky out of his tux pocket and wiped his brow, paused and said....
"When we talked about these vows.....I remember asking you REPEATEDLY...how long were yours?"
The church (and the poor Preacher) ERUPTED into fits of laughter.
And so it began...
We just thought "happily ever after" would have less "crapfest" mixed into it....
And this story is just another reason this blog has the title it has...
you can't make this stuff UP!!
Seriously, this is my life!!!
a baby-talking marshmallow!
It's adorable!! He will frown at me for saying that, but it is.
This morning, Braden was eating his chicken (yes, chicken nuggets for breakfast...it's a protein and calories...you do what you can do when your child has autism AND is taking chemo).
(yes, he's officially showing no evidence of disease on his scans, and yes he is still doing chemo...I'll explain that one another day.)
He was watching a movie on a portable DVD player and the kitty smelled the chicken.
Indy thought it smelled pretty good so he went over to stick his nose in it and get a whiff, hoping to snag a piece I'm sure!
Braden started giggling and said, "No kitty, dat's MY chicken!"
to which Brian whined, "No kitty, that's MYYYY pot piiiiie!"
If you get that, I know what "cartoon" you've been watching!! ;)
I cracked up.
But, I laughed harder yesterday morning when I wrote "vet" on a "to-do note" so I would remember to schedule Indy's first vet appointment (with our former next door neighbor Dr. Pelfrey at Stanley Vet Clinic...he's AWESOME and no, that wasn't a paid advertisement, just the truth!!).I looked at the note a little later in the morning (almost shocked to see it lying on the counter...I had forgotten all about it five minutes after I wrote it),
btw, this is why I write myself notes.
I'm the same person who used to have to take a sticky note with my destination written on it with me in the hall at school when I was a Principal because I would get stopped so many times, I would forget where I was going and have to come back to the office with my head hanging and ask the secretaries where I was headed!
I digress...
that'll happen a lot in this blog! :)
SO I looked at the note, and noticed Brian had added letters to it.
Now it said, "Corvette".
I busted out laughing.
This is why I love him so much...he's funny and witty and clever!!
I'm one lucky girl...
Most days!
So how in the world did we meet??
It's simple...all I had to do is buy a house!
I had won a teaching award that came with a $25,000 check...AWESOME!
And I had just moved to Kansas City from a small town in Central Kansas called Hays...LOVE that town!!
I had just been hired to be the Assistant Principal at a middle school (I was only there for a year and then accepted a job as Principal at an elementary school after that). I loved the middle school kids---they are hilarious!! And I loved the elementary school kids--they are sweet!!!
I had a down payment and I wanted to buy a house that would be my very own!! I had been divorced for a little over a year and was ready to independently nest!
Oh...and I had SWORN OFF MEN!!!
I'd dated...the pool was shallow...and frankly, I was over the experience!!
(insert eye roll and sigh...two sighs...and another eye roll)
A very dear friend and I drove all over Kansas City with a realtor looking at houses and I could never find "the one".
We looked at MANY houses.
After we looked at another one, we pulled to the end of the cul-de-sac to turn around and saw an unfinished house with a for sale sign that looked promising from the outside.
Unplanned, unforseen....spur of the moment decision....we stopped and went inside.
and I LOVED the floorplan but it was just at a drywall stage.
We called the builder, Larry Lochner, and he told us there was a finished version across the street so we could see what it looked like when it had paint and finished floors.
So, we met the homeowner the next day and walked through his house. I LOVED the house even more....
And...I noticed the owner...cute guy, and I was guessing he was single by the stereo on boxes that made up his stereo cabinet and vacuum cleaner in the middle of the living room.
And when we walked out of the house, I told my realtor, "Cute neighbor guy...buy that house!!"
And I did.
The cute neighbor guy was Brian and the builder was one of his best friends, Larry.
I met the rest of the neighbors immediately and loved them...they were all awesome!!
Brian knocked on my door a day after I moved in to say hello (I had said hello to him outside SEVERAL times) and asked if he could do anything to help.
I had already hauled the boxes to the basement, the pictures were on the wall, everything was set up and looking great...nesting had occured...
but I needed to think of SOMETHING so he would come in and I could talk to him some more....okay, the possibility of flirting had crossed my mind!
SO, I thought quickly...
It was the end of June in Kansas...
I told him that the upstairs of the house was too warm and I needed to adjust the damper on my AC, but I didn't know where it was...and that was true. I knew that was what needed to be done, but I didn't have a CLUE how to do it.
He helped me fix it and we got to chat a little...and he got to see my obsessive need for organization and neatness from the very first moments.
He was shocked and surprised my house was decorated already!
No stereo on boxes for this girl!!!
Well, we saw each other across the cul-de-sac and waved hello several times when FINALLY, five days after I moved in, I went out to run (I was running a LOT at that time in my life) and ALL of the neighbors were sitting at the end of someone's driveway drinking beer.
AWESOME!!!
I KNEW this was THE neighborhood!!
So I went for my run and when I got home, they were still there so I did the only neighborly, logical thing...
I stopped and drank beer!
It got late...so we moved inside one of the neighbor's houses...
It got later, and the homeowners wanted to go to sleep (unplanned, party lightweights) so the remaining bunch of us did the only logical thing...
Moved to another neighbor's house.
And we danced and laughed and had a couple beers (okay, okay...three beers... give or take a few cases...) until it was...
6:00 AM.
THIS NEIGHBORHOOD ROCKS!!!!!!!!!!!!!!!!!
At that point, we all went home and a little later, Brian called me and asked if I wanted to go to lunch.
Of course I said yes, and this time I KNEW I wanted to flirt. :)
We had lunch at a bar and grill and he explained what he did for a living using the sugars, salt, and pepper.
Seriously!
I got a good giggle and I've been laughing since then...
Well, most days. ;)
It's our very own version of a fairytale...once upon a time, I bought a house....
and got a baby-talking, marshamallow husband!
Luckiest girl in the world...
In fact, Brian and I wrote our own wedding vows to each other and I turned this story into a "FairyTale" format. I had my step-mom bring me a book I had scrapbooked, and I threw open the first page and read, "Once Upon A Time..."
Brian in his smart ass way, rolls up his tux sleeve and looks at his watch like "how long is THIS going to take..."
And I said, "Relax, You've got time!!!"
Even the Preacher laughed...
but no one laughed harder than when I finished.Brian took a hanky out of his tux pocket and wiped his brow, paused and said....
"When we talked about these vows.....I remember asking you REPEATEDLY...how long were yours?"
The church (and the poor Preacher) ERUPTED into fits of laughter.
And so it began...
We just thought "happily ever after" would have less "crapfest" mixed into it....
And this story is just another reason this blog has the title it has...
you can't make this stuff UP!!
Seriously, this is my life!!!
Monday, January 7, 2013
Detours...
Websters defines detours as..
Okay...be honest, how many of us started at LEAST one high school or college paper that way??
I did. :)
And my High School English teacher was not amused.
Sorry Mrs. Schmeller!
Upon further review...she was not amused by anything. :)
The dictionary reference is probably a bad idea in 2013 since
they are apparently archaic now.
But, I can totally picture ours at my house when I was growing up.
It sat on the shelf right beside our circa 1965 set of World Book Encyclopedias,
that I'm pretty sure a door to door salesman convinced my mom we HAD to have if her children stood any chance of being educated and well rounded!
And I'm too lazy to do it the 2013 way and pull up another browser to see what Wikipedia has to say...
So I'll do what the "everybody does", make my own up and post it on the internet,
then it must be factually true! ;)
Actually, let me just explain what happened to start the whole "detour" thing...
When Braden was fighting his first battle with neuroblastoma, all of his chemo was "high dose" and had to be given to him inpatient.
Basically, we lived at the hospital for about a year and a half. We RARELY came home and when we did, it was only hours or a couple of days before he spiked a fever or the next round, or surgery, or about one out of a million other things that required us to go back and spend more days at the hospital.
We learned quickly that even if you finished chemo at 11:00 at night and the doc said you could go home or spend the night at the hospital and leave in the morning,
you chose HOME!
and slept in a bed...
I always slept in Braden's little itty bitty hospital bed with him because he wouldn't let me get far away. He had to be touching me the entire time. Every minute of every day. It was actually really sweet!
I had to call the nurses to sit with him when I had to pee because he couldn't stand for me to leave and he would cry and cry while I was in the bathroom. Brian used to have to come up to the hospital to sit with him so I could take a shower every 100th day or so! ;)
Well...one of those nights, we left the hospital late and as Braden and I were pulling out of the hospital, we were met by a detour sign.
I wasn't happy to see it.
It was late at night, I was tired, stinky, wrinkly, and had a son in the back seat with his feeding tube running with a limited amount of feeds to flow through with a limited battery pack and Braden was equally tired...although less stinky and wrinkly.
A detour would mean the long way around something and that would take more time.
UGHHHHHH!!!!
We followed the detour,
and it took us past an historical part of Kansas City called Crown Center.
It is filled with lights and water features.
As soon as Braden spied it, he squealed, "PRETTY WATER!"
(he has a thing for water features...it's pretty much his favorite thing in the world)
Then he yelled, "WIGHTS"!
(he has a little l/w speech thing) :)
And he was clapping his hands and screaming and laughing REALLY hard!!
Well...no one was around, I didn't see any police cars so I flipped a u-turn in the middle of this usually very busy street.
He continued to laugh and scream and clap,
except now it was even louder and happier!
SO...
I turned another u-turn
by now, I was laughing, crying, clapping and turning around to talk to Braden in the backseat.
We did a "few" u-turns...maybe 6 or 7...
or more...
maybe a LOT more...
He was sooooo happy...not many things made him laugh that hard at that time in his life...
And it was wonderful until...
I saw something move out of the corner of my eye.
I looked in that direction and saw...
a bus stop...
filled with people waiting for the bus.
When I made eye contact with them, they quickly looked away!
Whoops!!
Not as alone as I thought we were! :)
I think they were a little scared of the blonde lady in the white SUV who was spinning circles and laughing, crying and talking to the back seat...
And that is how "detours" began for us.
You never know what wonderful things can happen,
How much joy and happiness you can find,
by taking an unexpected turn (even if you weren't really looking forward to that turn).
We try to do at least ONE simple thing every day that is a detour....something to just make us laugh and giggle and enjoy our time together.
Some days it's a trip to the park,
Others popcorn and a movie at home,
family game night,
reading books together (currently it's Horton Halfpot--awesome book),
eating dessert before dinner,
the best detours are free!!
Last week, I had lunch with my friend, Christine, (that was a detour for both of us...we rarely get to spend time together!).
After lunch, I was taking her home and we realized we we had just pulled up behind another friend.
We hadn't seen her for awhile and we were excited!!
So I honked and we waved.
Then while at a looooong stoplight, our friend sent a text to Christine that said, "Chinese fire drill?"
Never throw down a challenge to be silly....
I'm all OVER it!!
And this friend would be JUST the person to reciprocate!
SO, at the next stoplight, I threw my car into park and SPRINTED up to her car,
She opened the door and almost got out,
but we were laughing so hard and we didn't have that much time,
so, between laughs, we just gave each other a high five and blew kisses!
Then I sprinted back to my car.
Just in time to throw it in drive and make the green light...
Okay, maybe I was a "little" late for that light, but it was worth it!
We got many strange looks.
That happens to me a lot.
We're early into this blog thing, but that was probably apparent long ago. :)
Life should be filled with impromptu, silly moments,
those are detours!
Even when you are a 47 year old mom!
For me, it's what makes life worth living,
because it is living life!
Tada...detours,
definied ala Deliece.
Somehow, I don't think Webster would have the same definition. :)
Need a New Year's Resolution...
try a detour-a-day.
Free,
you can still eat chocolate,
drink wine,
and you don't have to go to the gym!
Again...Tada!!!
(oh and I have been working to try to figure this whole blog thing out and I added several really awesome links to the right). The top one is a story by JiaoJiao Shen from Kansas City's NBC Action 41 News. She is an AMAZING advocate for our children with cancer and she did a beautiful story that really sums up 5 years in 3 minutes. You will laugh...guaranteed...my boy has SKILLS! (you'll know what I mean when you watch it)!
Hugs!
Okay...be honest, how many of us started at LEAST one high school or college paper that way??
I did. :)
And my High School English teacher was not amused.
Sorry Mrs. Schmeller!
Upon further review...she was not amused by anything. :)
The dictionary reference is probably a bad idea in 2013 since
they are apparently archaic now.
But, I can totally picture ours at my house when I was growing up.
It sat on the shelf right beside our circa 1965 set of World Book Encyclopedias,
that I'm pretty sure a door to door salesman convinced my mom we HAD to have if her children stood any chance of being educated and well rounded!
And I'm too lazy to do it the 2013 way and pull up another browser to see what Wikipedia has to say...
So I'll do what the "everybody does", make my own up and post it on the internet,
then it must be factually true! ;)
Actually, let me just explain what happened to start the whole "detour" thing...
When Braden was fighting his first battle with neuroblastoma, all of his chemo was "high dose" and had to be given to him inpatient.
Basically, we lived at the hospital for about a year and a half. We RARELY came home and when we did, it was only hours or a couple of days before he spiked a fever or the next round, or surgery, or about one out of a million other things that required us to go back and spend more days at the hospital.
We learned quickly that even if you finished chemo at 11:00 at night and the doc said you could go home or spend the night at the hospital and leave in the morning,
you chose HOME!
and slept in a bed...
I always slept in Braden's little itty bitty hospital bed with him because he wouldn't let me get far away. He had to be touching me the entire time. Every minute of every day. It was actually really sweet!
I had to call the nurses to sit with him when I had to pee because he couldn't stand for me to leave and he would cry and cry while I was in the bathroom. Brian used to have to come up to the hospital to sit with him so I could take a shower every 100th day or so! ;)
Well...one of those nights, we left the hospital late and as Braden and I were pulling out of the hospital, we were met by a detour sign.
I wasn't happy to see it.
It was late at night, I was tired, stinky, wrinkly, and had a son in the back seat with his feeding tube running with a limited amount of feeds to flow through with a limited battery pack and Braden was equally tired...although less stinky and wrinkly.A detour would mean the long way around something and that would take more time.
UGHHHHHH!!!!
We followed the detour,
and it took us past an historical part of Kansas City called Crown Center.
It is filled with lights and water features.
As soon as Braden spied it, he squealed, "PRETTY WATER!"
(he has a thing for water features...it's pretty much his favorite thing in the world)
Then he yelled, "WIGHTS"!
(he has a little l/w speech thing) :)
And he was clapping his hands and screaming and laughing REALLY hard!!
Well...no one was around, I didn't see any police cars so I flipped a u-turn in the middle of this usually very busy street.
He continued to laugh and scream and clap,
except now it was even louder and happier!
SO...
I turned another u-turn
by now, I was laughing, crying, clapping and turning around to talk to Braden in the backseat.
We did a "few" u-turns...maybe 6 or 7...
or more...
maybe a LOT more...
He was sooooo happy...not many things made him laugh that hard at that time in his life...
And it was wonderful until...
I saw something move out of the corner of my eye.
I looked in that direction and saw...
a bus stop...
filled with people waiting for the bus.
When I made eye contact with them, they quickly looked away!
Whoops!!
Not as alone as I thought we were! :)
I think they were a little scared of the blonde lady in the white SUV who was spinning circles and laughing, crying and talking to the back seat...
And that is how "detours" began for us.
You never know what wonderful things can happen,
How much joy and happiness you can find,
by taking an unexpected turn (even if you weren't really looking forward to that turn).
We try to do at least ONE simple thing every day that is a detour....something to just make us laugh and giggle and enjoy our time together.
Some days it's a trip to the park,
Others popcorn and a movie at home,
family game night,
reading books together (currently it's Horton Halfpot--awesome book),
eating dessert before dinner,
the best detours are free!!
Last week, I had lunch with my friend, Christine, (that was a detour for both of us...we rarely get to spend time together!).
After lunch, I was taking her home and we realized we we had just pulled up behind another friend.
We hadn't seen her for awhile and we were excited!!
So I honked and we waved.
Then while at a looooong stoplight, our friend sent a text to Christine that said, "Chinese fire drill?"
Never throw down a challenge to be silly....
I'm all OVER it!!
And this friend would be JUST the person to reciprocate!
SO, at the next stoplight, I threw my car into park and SPRINTED up to her car,
She opened the door and almost got out,
but we were laughing so hard and we didn't have that much time,
so, between laughs, we just gave each other a high five and blew kisses!
Then I sprinted back to my car.
Just in time to throw it in drive and make the green light...
Okay, maybe I was a "little" late for that light, but it was worth it!
We got many strange looks.
That happens to me a lot.
We're early into this blog thing, but that was probably apparent long ago. :)
Life should be filled with impromptu, silly moments,
those are detours!
Even when you are a 47 year old mom!
For me, it's what makes life worth living,
because it is living life!
Tada...detours,
definied ala Deliece.
Somehow, I don't think Webster would have the same definition. :)
Need a New Year's Resolution...
try a detour-a-day.
Free,
you can still eat chocolate,
drink wine,
and you don't have to go to the gym!
Again...Tada!!!
(oh and I have been working to try to figure this whole blog thing out and I added several really awesome links to the right). The top one is a story by JiaoJiao Shen from Kansas City's NBC Action 41 News. She is an AMAZING advocate for our children with cancer and she did a beautiful story that really sums up 5 years in 3 minutes. You will laugh...guaranteed...my boy has SKILLS! (you'll know what I mean when you watch it)!
Hugs!
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