Zachism Saturday, The Birthday Sushi..

Zach turned 10 this week! Holy smokes, where does the time go?

I asked him what he wanted for his birthday dinner, expecting him to come up with something I could make at home.

Instead, he said...

SUSHI!! He LOVES sushi!!

Crazy thing is that one of his friends has a birthday on the same day so when I went to lunch at school with Zach, I told his friend HBD too! He said they were going to have sushi for dinner!! 

I almost fell over!

So...we were at the sushi place when we see these eyes pop over the little room we were in and it was another one of Zach's friends coming for...sushi!! :)  Small, sushi filled, world! LOL! I had posted a pic of us in our room on Facebook, and our friends recognized it when they walked in and were able to find us!!

So as the Brian and Zach were eating their Miso Soup (I passed...) Zach got very serious and said,

"Mom...this soup is a lot like you!"

I was worried.

"It's warm, comforting and I love it..."

Awwww...however, Brian and I were looking at each other like "huh?" :) Cute but a little strange...sorta symbolic of our family I guess!! LOL!!

Then he thought for a minute and added, "It's just like this piece of tofu!"

At that point, Brian coughed and nearly spat out his soup! (it was hilarious)

Then Brian said, "I know what's going to be going up on Saturday"

LOL!

Me and tofu...twins baby!! 

(which is incidentally the reason I passed on the soup) :)

Happy Birthday Zach! :)

Brave Knight Braden...

I am posting a very special story that I wrote August 15, 2008. It was after Braden had been in transplant for 3 days...and it already sucked.

Transplant is not fun!! AT ALL!

Our friend, Kori, who is a 17 year old FIGHTER is currently in transplant and I've been thinking about her family and praying for them every single day. She is amazing, but I remember how awful that process really is.

The background on this story is that a few weeks earlier, Dr. Shore asked me to write a story for a contest the hospital was having. He felt like it would be a great way to get kudos for the hem/onc team (and himself). Dr. Shore and I were getting along fine at that point.  

I agreed but just didn't have time to do it. I DID want to try to publically praise our nurses and staff...I love them with my whole heart!! They are AWESOME!!

I remember that Dr. Shore walked into our transplant unit room on August 14 and said, "So...the story is due tomorrow and you haven't turned anything in yet!"

I said, "For someone who wants me to do something for him, you took the wrong tact. How about you turn around, walk out that door, and come back in and try it again?"

He did. :)

He came back in and said, "GOOOOOD morning Mrs. Hofen...I hope you had a restful night and that things are going well. I was wondering if you had considered writing that story yet? WE would really appreciate it, PLEASE!"

The nurses and I fell into fits of laughter.

So late that night after Braden went to sleep, I wrote the story.

I will tell you about Princess Jamie next week...she was Braden's heart! And he STILL adores her even though she is no longer at the hospital. We do have playdates occasionally because we love her so much!  She worked in clinic and they were like two peas in a pod...I mean he LOVED her!!

So this is my post from August 15, 2008...and minus thinking Shore was any sort of an okay person (I no longer think that in any shape of form)...I stand behind every single word I wrote! 

Those people are AMAZING!!! And I love them very much!!

The word limit was 500...I got it knocked down (which you can guess is tough for me) to 499..so at the end I threw in 2 "verys" because it just felt "unfinished" at 499!! :)

Hope you enjoy it!!

Deliece :)

Brave Knight Braden

Once upon a not so long time ago, in a kingdom not so far away, there lived a brave knight named Braden. Braden was one of the most determined and courageous knights in the kingdom as he had faced numerous heath and development challenges during his first 3 years resulting in many visits to Children‘s Mercy Hospital and its clinics. On December 28, at 3 years 3 months of age, he would encounter his most mighty foe, a monster named Cancer.

After tests, doctors told Braden’s family that he had a rare form of cancer called neuroblastoma. His was stage 4 and high risk which resulted only about a 30% chance of survival. Braden was sent to a section in the kingdom called 4-Henson. On this floor, they met the equally determined Dr. Richard Shore and his team of merry gentlewomen, Nancy and Becky. Braden began chemotherapy treatments to try to control this monstrous tumor that had also invaded his bone marrow and right hip. The hope was that five cycles of high dose chemotherapy would shrink the tumor enough that it could be removed with surgery, and then additional therapies would be needed to eliminate all remaining cancer from his body. Braden was told that his battle would last about a year and be challenging at every step.

Braden found a strong support system in this kingdom to help him do battle with this cancer. Friends from around the world were hoping and praying for a victory. Those people became known as Braden’s Army. Some of his most heralded warriors were the nurses and care assistants in the Hem/Onc clinic and on 4 Henson. They were comforting, calming, and caring while helping him fight this vicious enemy.

Along the way, Braden met a beautiful princess who he adored. Her name was Jamie and she met Braden at the clinic with a smile and an innate sense of understanding. Braden also drew great strength from fellow brave knights fighting their personal battles with their own cancer monsters. Their strength inspired Braden and his family to continue to battle even during the darkest of days. And with the help of them all, Braden was successful in his first battle with the monster and was able to have his tumor removed successfully by Dr. Ronald Sharp.

The monster does not give up easily. Neither does Brave Knight Braden. The next battle Braden faces is a bone marrow transplant which is where the story continues today. Braden has fought hard and will continue to do so to win the many battles ahead of him. Braden’s story is one of hope, faith, and great love. And that is how the next chapter in Braden‘s story begins, with hope! The kingdom of mighty warriors at Children‘s Mercy Hospital, Braden’s Army, Braden’s own great bravery and strength, and continual faith and love provide that hope. The hope that this story will end with “and he lived happily ever after…for a very, very long time”!

The Beginning

And this is the video that I made to recap his first year of therapy.... it still makes me cry but it was very healing to put this together! This should be an active link...I hope!

HOPE!

http://www.onetruemedia.com/otm_site/view_shared?p=88100e29b064421be0d1b3

Sign My Guestbook | Read Tributes

Zach...

Today is a very special day.

It's Zach's 10th Birthday!!!

I remember April 3, 2003 like it was yesterday. I woke up to Brian video taping waking me up!! :)

His delivery was a planned c-section after Miranda's birth which was an emergency c-section. I didn't want to take ANY chances that normal delivery might cause complications.

I was SO over complications.  Miranda had died on August 1, 2001 and I had a miscarriage in between Miranda and Zach.

We SO wanted a baby!!

So off we went to the hospital, and a little after 12:30, Zachary Dean Hofen was born!

He cried immediately.  And he didn't stop crying, very often! :)

He cried so much that the nurses came in the middle of the night and asked if they could help. LOL!  This child hasn't stopped "talking" since he was born!!

We gave him a pacifier and he was much happier.

It was pure joy!! I didn't want to stop holding him because it was finally here. We finally had a beautiful, healthy baby!!

There were no words to describe the feeling of holding him for the first time. I looked at his face, and I was honestly terrified and completely in love.

I kept waiting for the other shoe to drop...something had to be wrong, it couldn't be that he was fine?

But he was, and as we held him, both Brian and I had tears.  Tears of joy and tears remembering the last time we had been in the c-section operating room when Miranda was born.

We were finally going to be able to take our child home with us rather than leaving the hospital with empty arms!!

And...I had NO idea what I was doing! I'm the youngest in my family and I had only changed a handful of diapers. We had to take a class to learn how to do the "basics".  LOL!!

Brian was the fastest swaddler in the class!! I wasn't one of the top ten!! :)

It's not like I was completely unprepared...

I had a Baby Alive when I was little!! :)

I fed her and gave her a bottle, she pooped and peed....

Okay, I confess, I stopped feeding her and putting water in her bottle because....well, it was gross and smelly and not something I enjoyed.

But I took GREAT care of my Mrs. Beasley doll!!...

I never lost her glasses and I took her for rides in my toy baby carriage all the time!!!

So what if I couldn't swaddle that doll in class!! LOL!

Brian and simply soaked in every minute after he was born. It was total happiness!  After we had so much trouble getting pregnant, then Miranda died, and then we had a miscarriage....3 years of sadness, we finally had a child to bring home and love!! PURE JOY!!!!

Then, a few hours after Zach was born, the lactation nurse came in to try to help me breast feed.

It was not working and I was rolling with the punches and not getting too worked up so she asked me how committed I was to breast feeding.

I told her that I was only going to be able to breast feed for a couple of months before I went back on my medication for my MS.  I had to go back on my meds because I would risk a flare of my MS and Zach couldn't drink my breast milk once I started my shots. Betaseron isn't good for babies.

She disapprovingly looked at me and said something about how that wasn't very committed and how I needed to reconsider my dedication to our son, and then she launched into a whole angry-faced speech about why I needed to better for our son and how good moms do x,y, and z.

She made me feel completely horrible!

I don't often shrink away, but I did at that moment.  I was too crushed and I had no fight to respond with, I was hurt. I held my son closer and averted my eyes from her judgmental stare.

And Brian doesn't get mad very often,

but he did that day.

She left, I had tears, and Brian went down the hallway after her.

I can only imagine how that convo went!! :)

The supervisor came in later and apologized for her.  She never returned, which was wise!

We had so many visitors in to meet Zach and share in our happiness!  It was honestly the best feeling in the world and it was so much fun to share it with all of our friends.  Brian called our families and told them Zach had arrived.

When we came home, our entire yard and house was decorated by our amazing neighbors! It was priceless!! I cannot describe how much our friends are our family...but they truly are just that!

I just can't believe Zach is 10 today.  I know. Every parent says that, but it's TRUE!

When I tucked him in bed last night, I told him to enjoy his last night of single digit sleep because tomorrow, he enters the double digit world and will be there for a really long time...triple digits are next!! :)  He thought about that for a long time and was REALLY excited about this double digit thing.

I just cringe thinking about double digits that end with the word "teen".....oh boy!! "Drive-teen", "Date-teen", "First Kiss teen" "Graduate teen"....ughhhhhhhh!!!

I need a drink!!!

10??  How in the world did the time fly so fast!?

And what an amazing 10 years it has been.

Zach is joyful and kind and just a good kid. I feel VERY blessed to  be his mom. He makes me smile every day and his Zachisms leave me in fits of laughter, although I try for that laughter to be with my "inside voice".

I think he's amazing!!

And I'm a very proud momma!!

Happy Birthday Zacharoonie!!!!

Thumper...

When I was probably about 5 years old, we lived in town... (the orange brick house at 417 S Smokyhill in Oakley, Kansas!

and on Easter morning, we opened the front door to go to church and...

on the front porch, right outside the door, in a box with a lid, was a beautiful white rabbit with big red eyes.

And a note...

the note said it was a gift for ME!

And it was signed, "The Easter Bunny!"

I was SOOOO excited!!

I remember screaming and running around the yard in my hand me down Easter dress that I loved!!

My parents were clearly surprised....

and not as excited.

The conversation the whole way to church was "who did it".

Ummm....duhhh...the Easter Bunny signed the note people....

this is NO mystery!!

Seriously!!

We got through church where the talk the whole time from my parents and their friends was...

who dunnit?

The talk from me was...

"I GOT A BUNNY RABBIT AND I CAN'T WAIT TO GO HOME AND PLAY WITH HIM!!"

And my friends and I decided to name him, Thumper!

My parents were not "pet"people.  We didn't have a dog or cat or anything...I had my horses...

but they didn't live in the house!! LOL

(My mom was a neat freak just like me!!)

We got home and there was a discussion about how we couldn't keep the rabbit.

And...my brother actually rallied to my defense.

Tears worked too...and lots of PLEASEs...and batting of the eyelashes and promises to take care of the bunny and they wouldn't have to do a thing...and ....and....and.... :)

IT worked.

They located a hutch that we could borrow from the post office manager so we picked it up and put Thumper's cage outside in the back yard near the alley.

At least we got to keep him.

I used to hold Thumper for hours...and had a ton of scratches from his nails but man we loved to snuggle...

perhaps it was ME who loved to snuggle...maybe that's why I had those scratches??  LOL!

I remember going to the grocery store with my mom a few times a week to get the lettuce they cut off the heads of lettuce before they displayed them to feed him.  It was free and my best friend's parents owned the grocery store.

We fed him carrots and cleaned the rabbit droppings...oh so many rabbit droppings!! LOL

But one night, several weeks later, Thumper's cage was open and he was missing.

My brother and his friend, Kenny Ray, went out with flashlights to look for him.

They thought I was asleep when they came back in the house and told mom that there was fur and blood everywhere behind Kenny Ray's house...they guessed it was a dog who got the rabbit.

I cried so hard!!! I still can vividly remember that feeling and standing there in the hallway in my nightgown sobbing!!

So quickly the story changed to the fur wasn't white, it was brown so it had been another rabbit and that Thumper escaped and ran away and was living in the field safely.

Whew...that was a close one!!!  ;)  Thank goodness Thumper was safe!

I still cried for days because he was gone even though I knew he was happy living in the field with his new rabbit family where he didn't have to stay in a hutch and he could run free.

No one ever fessed up to bringing Thumper...again..duh...it was the Easter Bunny....eye roll!!

The theory was that it had been Larry Farmer.

If you ever drive down I-70 heading to Oakley, you will see signs for a place called "Prairie Dog Town" with the world's largest prairie dog..over 2,000 pounds!

Tourists stop all the time to see that...and yes, it's cement!!

But there really is a five legged cow (seriously) and other critters Larry caught (including a rattle snake pit).  I'm not kidding...Larry caught almost everything he had on display!!

And they sell hundreds of "Kansas pies" which is a pile of cow manure in a pie box.

Seriously!  People buy the craziest stuff!!!

I'm not sure if Larry had any influence with the Easter Bunny or not, but if he did...thanks Larry!!

And...don't even think about bringing my kids a bunny on Easter...

I now side with my parents!! LOL!!

The Easter Bunny here brought a stuffed bunny...so much easier!!

Happy Easter friends!!!

Zachism Saturday, March 30 2013

Over spring break, while out of town, we went to a PF Changs for dinner.

We all read our fortune cookies to each other.

They were all "wisdom" sayings... like about kindness and love and forgiveness...

Zach thought for a long time and once we were in the car going back to the hotel, he said,

"you know...my school counselor says a lot of the same things those fortunes did...

she must spend a LOT of time at PF Changs!"

Brian and I just agreed.

It was SO much simpler!!

Happy Saturday!

The Gift of Autism...

Braden has lots of gifts from God, one of them is autism.

Just this past fall, we had him tested for autism and the tests proved what we have known since he was 8 months old. He is, indeed, a child with autism. And my response is “so what!” It changes nothing…we’ve been treating it like it was autism for almost his whole life with therapies and treatments.

But…

Reading that psychologists’ report…well…it hurt. It boiled him down to numbers and analytic descriptors from a person who doesn‘t know Braden and his gifts/talents. And I don’t like what those numbers say about my son. I realize she has to write it from a deficit standpoint…and I know those deficits are there…it’s just there are 1 million times more positives than negatives. My “Momma Bear” hair stood up as I read…

He is SUCH a great kid…not what that report says he is…

And I have been thinking about and worrying about all of the parents that we handed reports to while I was a Principal. Oh how I hope we never hurt anyone like I hurt right now. These are just numbers, I was prepared for them, I understand them completely, and I know they do not tell who Braden Hofen is, but they suck. Plain and simple…they suck.

The autism does not suck. I think it’s been a gift for Braden…yes, really.

He has no idea he has cancer and that he could die from it. He has never once had to be scared or worried about death and anticipating the pain of treatments. That really is a gift! All he has to know is that we love him and God is taking care of him.

Braden has autism and I am not ashamed or embarrassed or apologetic…it is the gift he was given when God made him and we celebrate every gift!! EVERY single gift!! I have however, wondered if Braden would be able to understand “God” because things that are abstract are very difficult for him to grasp.

While I completely believe in God and His love; those are abstract concepts and I didn’t think Braden knew and understood God and that used to worry me.

Braden doesn't understand abstract concepts and I had never spoken to him about God. I prayed all the time, but I pray silently, not outloud and I wait until he is asleep because I'm prone to crying during prayer.

I worried needlessly!

A friend once gave me a cloth that had been blessed in a special place. I don’t really give much credence to those kinds of things but when he was 3 and going through treatment, I used to put it on his belly (where his tumor was located in his liver) and pray for remission when he was asleep for whole nights at a time. I figured it couldn’t’ hurt! :)

He had never seen it and it was always hidden during the day so he didn’t take it and play with it.

If it was special and magical, I didn't want him to rip it. :)

One day, he was beginning to feel warm which would mean a fever and ER trip…I put it on his head and was about to pray when he reached up, pulled it off his head, looked at it and said,

“Oh...hello God!”

With my mouth gaping open, I burst into tears.

Braden KNOWS God and God knows Braden. It doesn’t have to be in the way we typically think about “knowing” God.

God speaks autism!! ;)

And God is concrete in Braden's world!!

God surrounds us with his love and I know that He is surrounding Braden right now. No matter what these developmental tests showed and what happens with his future, He is with Braden and they are connected at a very deep level!

God will  ALWAYS be there with him.

God has given us 8 years with him...

We hope we will get 9!

TAKE THAT cANCER!!

Bubble head...

Bubble head...that's me! :)

For the first time in several years, we went on a little road trip for spring break.  We headed to DesMoines and then up to Minneapolis and had many detours along the way.

The three detours that were the best were:
1. Watching Brian wrestling in a tournament..yes, Brian. He's 46...and did GREAT!

2. Seeing cousins we hadn't seen in MANY years!! Absolutely a perfect evening with the boys playing and the adults enjoying some awesome vino!

and

3. Getting to go visit Miranda's grave (I know it sounds like a strange thing to have as a favorite but I rarely get to visit her gravesite so when I do, it's a highlight!) I love talking about Miranda and each time we visit, Zach asks lots of questions and I get to tell him about her! We put some beautiful white flowers by her grave and blew her lots of kisses in Heaven.

But, the detours were not where the "bubble head" thing comes into play...that happened about 90 minutes after we left.

We took two vehicles because Brian is going back to Minneapolis for work after he goes to the NCAA wrestling championship tournament the rest of the week. 

It was a good thing because we needed the car space with all the stuff we had to pack... :)

When you have a child with autism and cancer, you cannot just go someplace. It is NOT a simple process.

I packed up all of Braden's meds...and my meds....and that was nearly a suitcase in itself. We have to take everything (including a portable nebulizer in the event his asthma flares). There are a LOT of meds for the two of us and I remembered them all!! WAHOO!!

I packed swimsuits and swim shoes for the hotel pool, and the snow stuff like snowboots, snowpants, hats, gloves, and big coats...a blizzard was predicted.  (love snow blizzards...yay!!)

Clothes for all of us...for a week...that was a LOT of clothes because Zach layers his shirts so that was two suitcases. :)

All of my workout stuff...sheesh...shoes, hair ties, my knee brace, my heart monitor watch, my light weights incase the hotel didn't have them....holy moly this healthy thing is a pain in the neck!!

All of Braden's food.  He only eats about 10 things so I have to pack all of his food everytime we go someplace:

Cool Ranch Doritos, Chicken Nuggets (cooked and cut and put into bowls then inside freezer bags and into the cooler), 9 BIG tubs of yogurt (and then we had to buy two more), crackers, and a gallon of milk. It's so much easier to take it with you than to try to find it things at a grocery store...not everyone carries the ONE kind of yogurt Braden eats! :)

And lunch for Brian's tournament (so much better than the stuff at the concession stand)...bread, turkey, peanut butter, apples, crackers, Special K Chips, carrots, and water....and of course plates, silverware, napkins,

and even a trash bag!!

My cereal...girl's gotta be pampered a little!  :)

The big camera to take pictures of Brian wrestling.

Laundry soap (we end up doing laundry all the time...somebody spills something and I like for the swimsuits to be clean before I pack them...I know...I'm a germ nut), fabric softener AND

dish soap and a brush to wash Braden's dishes each day. :)

Braden's backpack of toys...the electronics for the car ride and

his 3 Tigers, Tiger Hat, Color Blankie, and Penguin blankie. We can't go anywhere without those!!

And...Braden's daily cooler with his "gotta have it right now" food stash...in addition to the big cooler with the refrigerator of food inside for the rest of the trip.

Since we now have a cat, we asked one of my besties' daughters to come take care of him. I had everything out and ready to go for him.

And I vacuumed and dusted and cleaned the bathrooms before we left..it stresses me out to come home to a dirty house! :)

My car had been serviced, cleaned inside and out, and it was gassed and ready to roll!!

I packed up the flowers I had purchased back in May (I always get extras during the memorial day sale so I have them for our visits to Miranda's grave during the year).

I had gotten cash and organized my wallet so everything was in a neat row so I could easily find things quickly.

I had even transitioned my purse stuff into a backpack so it was easier to run around places and detour and not have a big purse to carry around all day long...I have to carry Braden's cooler and a purse takes up two hands...I need one to reign in the "B-Man" when he decides to wander! :)

I even had gone to the grocery store so when we got home we would have milk that hadn't expired and some other stuff to hold us over so I wouldn't have to go to the store until Monday when they boys go back to school.

And I did the laundry that was left over and started the dishwasher so I wouldn't have to do those two things when we got home either.

I had it ALL ready to go!! I was so proud of myself!!

We stopped about 90 minutes after leaving KC to grab some lunch and I reached into my backpack to get my wallet...

and THIS is where the "bubble head" thing comes in...

no.wallet.

CRAP!!

When I went to the grocery store the night before, I put the newly organized wallet into my purse and took my purse with me...

I hadn't transitioned it back into the backpack.

No cash,

No credit card,

No ID... (I began praying no one would card me for alcohol because I SERIOUSLY needed some, right then!!)

I texted my friend, Amy, who had her daughter run over to verify that I had indeed left my wallet in my purse. Thank goodness Amy is like a twin...she got it and we both had a GREAT BIG giggle via texting over it!! :)

The report came back that indeed, my wallet was in my purse.

Brian said it was better that it was there than lost! :)  Smart ass!!

SO...I had to borrow money from Brian and he gave me a credit card for gas on the way home.

And after it took me 2.5 hours to put everything away in the house, I finally looked for my wallet. It was right there...just like I had left it when I went to the store.

AWESOME!! LOL!!

SO I'm a bubble head...the ONE thing I forgot was my wallet.

DUHHHH!!!!!!!

It was still a great detour....bubble head or no bubble head,

I put in some pics from some of our detours below...hope you all had a great spring break too!!

:)