Why...

There are a lot of things in life that make me wonder "why". You know, really big life questions that need answers and solutions.

Things like: Why do rabbits only eat the flowers and plants in my landscape beds and not the weeds?

I would totally welcome those little "wascals" if they would just eat the weeds rather than destroying what is left of my expensive plants.

Most of my "why" questions center around my children and this parenting gig. My boys leave me with several questions that cause me to scratch my head in wonder.

Here are a few:

Why Do They ALWAYS Begin Causing Trouble The Second I Answer The Phone?

Seriously!

They can be doing whatever they are doing independently and beautifully for hours but the minute the phone rings it's like a Pavlovian bell throwing them to active duty.

Suddenly, they both need something or have to tell me something...

e-freaking-mediately.

I've even left the room and escaped into the garage to take a call so I could hear the person on the other end.

I was, of course, locked out by my nine year old who has autism because once a door closes has a tremendous need to lock it...

e-freaking-mediately.

Bonus Parent-Trap Tip, it's not that easy to get two giggling boys to let you back into your house when you are knocking and asking them to open the door...right now! Keep a spare key handy in the garage.

Why Do They Not Care About A Particular Toy For Months Until They See Their Sibling Touching It...

And then suddenly it becomes priceless and their favorite toy ever and "he can have anything else I own but not THAT mom. I love THAT!"

Sigh....

and mom eye rolls.

Why Do They Not Hear You When You Ask Them To Help You With A Chore...

BUT...they can be sound asleep upstairs as you sneak into the freezer and get out the good ice cream you have been hiding WAY in the back and when you start to scoop it into a bowl...

they suddenly appear in the kitchen and ask to have some ice cream.

(Not that this has ever happened to me)

Why Do They Wake Up At 5:30 AM....

on the only day you can sleep in.

And as an added bonus they make so much noise "being quiet and waiting patiently for you to wake up just like you told me to do mom" that they wake you up and you can't get back to sleep.

But, on days when they have to be up, you literally have to roll them out of their beds...

while they whine and complain about how much noise you are making trying to wake them up so early because they are soooo tired. "Puhlease mom...just five more minutes!!"

Why Do They Have To Have Funny Retorts To Questions When You Are Mad?

This happens most often to me when I am talking to myself using my "out loud" voice rather than my "inside my head" voice as steam is billowing out of my ears after my boys have done something bad.

Usually, it's when they are sitting quietly to "reflect upon their behavior". (That's the  9 and 11 year old version of time out because apparently time out is for babies, so I just renamed it.)

Boom!

Here's a recent example...

"Why in the world would anyone ever think it was a good idea to spray sunscreen all over the side of the car?  What could you possibly be thinking the positive result of that action would be?"

The answer from the non-involved sibling witness, while giggling, was...

"You gotta admit mom, it is really pretty funny if you think about it for a minute!"

It's hard to make an effective case for not doing something again, ever, when you are laughing so hard you have tears.

AND....Why Are They So Darn Adorable When They Sleep?

Nothing is cuter than watching them all curled up, sleeping...

without talking...

or spraying sunscreen on cars...

or fighting over a toy.

When they are just quiet and sweet and...

silent.

I'm pretty sure those moments are the ones that keep me sane...

'ish.

Even with all the "whys", I wouldn't trade this mom gig for anything in the world.

I just keep the wine handy!

Zach...

The day our son Zach was born was...well a huge celebration.

Obviously.  Sure, parents celebrate the birth of their children but for us, it was extra special.

Before Zach was born, we had a daughter, Miranda Grace, who died in my arms 15 hours after she was born due to underdeveloped lungs after a complicated pregnancy and bed rest for 2.5 months.

We tried again to have a child and had a miscarriage.

So we picked ourselves up and tried another time. On April 3, 2004, Zachary Dean Hofen entered the world...began crying...

and he hasn't stopped making noise since. :)

We were so very happy. Life was good.

Like most parents, we wondered what Zach would become...

achieve...

and dream of.

What would his dreams lead him to become...

Would he be ornery....

And if so, would we be able to catch him at it....

 

Maybe he would be a water boy....

Or a pilot....

Or perhaps he would be a famous jet ski dude...

Professional fall leaf taster?...

Santa's co-pilot?...

We had no idea but the one thing we knew was whatever Zach chose to be, we would always be there, holding his hands, and encouraging him every step.

But the one role he never saw coming, was the role of big brother.

This new little guy certainly rocked his world...what was with this new "sharing my parents" thing? 

What happened to "all eyes on me because I'm so cute" way of life?

And what was with all the crying, stinky diapers, and noise at all hours of the day?

This brother thing seemed a little "sketchy" but Zach earned the title of "Best Big Brother" quickly.

And then his baby brother, Braden, got cancer. 

And Zach became a very grown up 4 year old overnight. His family was split into two locations, mom and Braden lived at the hospital and dad and Zach lived at home....

for over a year. 

Zach visited the hospital and we played. But it wasn't the same as living together.

Everyone's world changed overnight with that diagnosis. And Braden has been fighting cancer continuously for 6.5 years

And mom got cancer too so both his mom and brother fought cancer together.

Zach's live changed once again...and he became more and more aware that life isn't a guarantee.

He had to learn lessons of life and death, fear and uncertainty, and brutal realities no one should have to deal with before the age of 7.

He also learned how awesome people are and how kind they can be in your darkest hour.

He learned about God and His grace and mercy.

And he learned about courage, fight, and HOPE!

Zach continued to grow older while continuing to have a heart of kindness and love.

And he became a Chef...

A candle blower-outer...

A giver of smiles...

A patient brother...

An explorer...

A comedian...

Handsome....

Sweet....

An artist...

A friend...

A military hopeful...

A wrestler...

A drummer and trombone player...

A great snowball target...

And three months ago, at the age of 10, he became a bone marrow donor.    

                                                     

To try to save his little brother's life.

There was no other match in the entire world. Zach was the only one...and he was a perfect match.

Without Zach's bone marrow donation, Braden would have died in a very short time.

So Zach went through surgery to have his bone marrow extracted and then transfused into his brother.

Knowing full well that his cells could save Braden's life...

....or they might not.

That's a lot for a ten year old to carry on his shoulders.

After his cells were blessed by the Pastor in the room, Zach said, "Mom, this wasn't much fun but I would do it again."

And as the nurse transfused Zach's cells into Braden's body, the tubing miraculously formed the shape of a heart...

Zach didn't just donate his bone marrow.

He donated his love...

and brotherly HOPE.

Zach is a pretty amazing boy and I am blessed to be his mom.

I thank God for this little boy every single day.

And I learn from him....every single day.

I learn what LOVE really means.

I learn what HOPE really means.

And I learn that DREAMS take many different forms. 

It's not just about what title you will be called...what caption will be on your pictures.

It's about what caption your heart wields. 

What your heart shows the world about how to live life by putting other's before yourself....about taking risks to try to save others.

Zach is eleven now. 

I wonder how many more powerful lesson this young man has to teach me in the next 11.

I can't wait to find out.

We love you Zach!

Normal...

When our son, Braden, was 8 months old, he was playing with one of those shape toy thingies. You put the correct shape in the correct hole. This one was musical and had a big center hole that had a reflective sticker in the bottom of it.

Braden was sitting in the center of our family room floor and dropping throwing the pieces into the center hole in a very aggressive and focused manner. I as watched with my 20+ year educator eye, I began to freak out.

I tried showing him what he was supposed to do, even did it hand-over-hand and he got it!

And then he immediately returned to his repetitive action. I could see that what he was doing was patterned and stimulating behavior.

And I knew.

I made some calls, and some evaluations done and although he wasn't old enough for us to make an official diagnosis, we began treating it like what I believed he had...

autism.

My heart broke. Our son was a child with autism and life as we had dreamed for him was not going to be a reality.  Even with five therapies a week and my husband, me and our sitter working with all day and evening we would not be able to change that fact.

He wasn't going to be able to have a "normal" future.

My worry was that he wouldn't be independent, he would never drive a car, get married, have children...all of the things we all assume will happen as a part of the normal growing up process.

I remember having coffee with a friend who had a son on the spectrum and explaining how I just wanted him to be able to play baseball with his brother in the yard like other children.

I just wanted things to be normal.

Then Braden was diagnosed with cancer and has been fighting for 6.5 years. It turns out the autism has been a blessing because he has no idea what "normal" is...

he doesn't know everyone doesn't feel horrible all the time, he doesn't know everyone doesn't go bald with treatments, he doesn't know everyone doesn't live a large percentage of their lives in hospitals hooked up to tubes and bags of chemo, he doesn't know everyone doesn't get shots all the time...

He thinks all those things ARE normal. And because of that...he is the happiest boy in the entire world even with his crappy circumstances. It's all about perspective.

The biggest benefit is that because of his autism, he doesn't know he is supposed to die. He doesn't have to be afraid because he doesn't even know what cancer is or that he is sick. He doesn't have to be afraid.

I'm grateful for autism now.

GRATEFUL!

And I'm not trying to "train" him out of his autism anymore.

This "different normal" is a gift. And this young man has taught thousands of people about HOPE and FAITH and BRAVERY and FIGHT!

But....my mommy heart still wants the normal things for Braden.

Last night after dinner, we went outside to play basketball...Braden's favorite thing in the entire world!

I noticed some bushes that were very overgrown so I got out the clippers and snuck two feet away from him to clip a few branches. Having a child with autism is like have a two year old all the time, you cannot leave them because you don't know what they will get into or where they will disappear to. There is no "me" time because you are always on watch and that makes things like simply trimming bushes two feet away from him difficult to do.

I could hear the basketball bouncing so I knew we were good...for a couple of minutes anyway.

Then I heard two basketballs...his brother, Zach who is 11, joined him.

Then I heard, "Braden, let's play baseball!"

Rats...I was going to have to stop trimming so I could help Braden play baseball.

So I hurried, I clipped fast and furiously so I could get as much done as possible while they got the wiffle balls and bats out.

And then it happened...the sound of Zach pitching and Braden hitting! Zach was telling Braden "Good hit Braden" and Braden was giggling.

I came around the corner and this is what I saw...

I gasped...took a picture and just stood and smiled.

It was happening....the dream I told my friend I wanted and was so sad we wouldn't get.

My boys playing baseball in the yard by themselves.

Holy smokes!!

As I watched smiling with tears running down my cheeks, they completely ignored me and switched places.

WHAT?

And they were sharing and taking turns voluntarily?

I didn't want anyone to pinch me because if I was asleep I did NOT want to be awakened.

And they kept playing for a long time!

Aren't they sweet and cute? (proud momma here)

I was able to go back to trimming the bushes, collecting the branches, and putting them in lawn sacks.

And that friends...has never happened in 9.5 years!

I went in the garage to put away the clippers and heard a loud scream and crying.

I freaked out!

Braden is only 66 days out of a bone marrow transplant. Zach was perfectly matched his bone marrow donor.

I SPRINTED outside and saw Braden crouched down on the drive way grabbing his eye. Zach was standing beside him trying to comfort him and crying too explaining that he had accidentally hit the wiffle ball into Braden's eye.

It left a mark.

A big, beautiful, red, swollen mark...

...that was an injury from playing baseball with his brother.

It wasn't from cancer.

It wasn't from the autism and not being safely supervised.

It was from playing baseball like every other kid.

It was "normal".

NORMAL!

That crazy red, swollen eye was a gift.

And they kept playing baseball. And  his eye was all better in about 10 minutes.

My dream came true! 

Maybe...just maybe...nothing is impossible...

HOPE!

"Jenny"...

I have this friend...

I really do have more than one friend (giving myself an encouraging high five right now).  And each and every one of them has a heart of gold. They are selfless and wonderful and amazing, or they wouldn't be my friends.

I have zero tolerance for "Mama Drama" females and I quickly walk away and wish people well when that is their specialty. Ain't nobody got time for that!

Occasionally I like to write about my friends because they are so special, and today is one of those days.

Now, each of my friends is special for a lot of reasons, But there's this one....and she will want to remain anonymous because she does NOT like to have any attention called to her in any shape or form.

So to preserve her anonymity, I'll come up with a pseudonym for her.  Now let's see....

Starlight Moonbeam?

Nah.

Bat Girl?

Wonder Woman?

Hmmmm...closer....

She-Ra Princess of Power?

I kinda like that one...

Wait! Eureka!

How about....Jenny?

Yup, that's a great name because it rhymes with many (and she does many things for many people) and it rhymes with penny (because she's raised a bunch of them for kids with cancer) AND it rhymes with Lenny...

(that one just made me giggle a little when I was running through rhyming words in my head)

So..."Jenny"... (as we will call her)...is pretty awesome!

She's smart, kind, giving, funny, silly, and strong.

She won't agree to any of those descriptors...because she is very, and I mean VERY humble.

Jenny is one of those people who helps others just because she simply wants to help others and make a difference. It's really that simple.

I "met" Jenny about 6 years ago when someone put together a race for Braden to raise money for his medical costs. She called me out of the blue and offered to put together a silent auction at the race. I remember vividly saying that we would be honored but it was so much work...was she sure?

She said of course and then put together a silent auction that raised over $10,000! I had never met her...she just heard about Braden and wanted to help! I was shocked and amazed.

Along the way, we became friends and I am honored to call her one of my besties. She's the kind of person that makes you a better person just because she's your friend!

(Maybe I should have gone with She-Ra Princess of Power instead)...

...hmmmmm....

Anyway, Jenny was a huge part of starting our charity, Braden's Hope For Childhood Cancer, and has turned dreams into reality through organizing, managing, initiating, acting, and always making a difference for our children with cancer.

Just because she's a good person and wants to help! She doesn't have a child with cancer. She doesn't get paid to do this. She just wants to help our kids and she spend more hours than I can even begin to count doing it.

She's completely selfless. So selfless I stand in awe!

Simply put, she inspires me to be a better person.

I think out of all of the traits she possesses, the one I admire and respect the most is her humility.

You can give Jenny a pat on the back for about a full 2 seconds...and then you have to stop it! She really doesn't want any thanks, she is helping from her heart.

And I mean completely....totally...and selflessly...helping from her heart.

So because every time I try to thank her in person, she smiles and changes the subject, I'm ratting her out in this blog.

BOOM!! :)  That'll teach her!  LOL!!

People like that earn the greatest gift I can give them...my respect. I don't give that away readily or easily.  I totally respect Jenny....or whatever her real name is. ;)

Jenny is one of those people you just want to be around because....well...she is just that awesome!

So if you read this "Jenny"...thank you for letting me be your friend!

I love you!

Cheers!

Typical East Coast Philly Pholks....

We all know the stereotype of "East Coasters"... brash, blunt, loud...

...you know...the East Coast "attitude" as portrayed on The Desperate Housewives of New Jersey and Jersey Shore.

They are rough and tough and "taulk about drinking caufee" all the time.

I'm a midwesterner...born and raised. I'm not a city girl. I grew up in the country with wide open spaces, beautiful sunsets, horses, and at least half mile before reaching another neighbor.

We've been traveling back and forth between Kansas City and Philly for over 5 years for our son's cancer treatment. He's nine now and we are just wrapping up a 2 month long stay in the city.

I'm used to everyone making eye contact, smiling, and saying hello to everyone we walk past...at the grocery store, mall, walking in the neighborhood, everywhere.

It's not like that in the city...

(city folks are laughing out loud right now in acknowledgment)

I'm a simple country mouse...living the life of a city mouse...

...with a 9 year old who is bald and wears a big pink mask to protect him from germs after a bone marrow transplant that has left him very immunosuppressed. It's quite a sight and attracts the stares of even seasoned city folks.

But while we've been here, we have learned a lot about you East Coasters, specifically the Philly Pholks with their bad ass, rough and tumble reputation.

Yes, East Coasters are direct...and blunt, (my people!! truly the yin to my yang!)

....but they are also kind...caring...giving...and...

(they'll really dislike this word)...

SWEET.

Let me tell you about a few things these Easter Coasters have done while we have been here.

There was one family who drove for about 2.5 hours to the hospital to surprise us with two huge baskets of goodies for us as a random act of kindness in celebration of a friend we have in common who would have been 41 that day. I was speechless.

Everyone at the hospital was delightful and the nurses (and some of the doctors) played basketball with Braden using the hoop we hung on his door. The child life specialist played with Braden each and every day and she even made him an official CHOP "Dr. Braden" badge. When he was dismissed, they gave him a stethoscope.

Left to right, our Neuroblastoma APN, Jennifer, Braden, our MDS APN Anne, and Dr. Olson our transplant doctor.

Rebecca...the child life specialist who played with Braden every day...we LOVE her!

Dr. Braden cleaning the baby's tubies.

When we were dismissed from the hospital and had to get a hotel to stay in for nearly a month several local foundations got together and paid for all of it. Each foundation paid for a week of our lodging and that was well over $4,000. I didn't ask any of them, one foundation called the hospital and offered and then asked a fellow foundation to join in. Unimaginable!

Ali and Joe McDonough from the Andrew McDonough B+ Foundation

Local people have reached out to bring things to us that we can't have delivered, like Braden's special yogurt and crackers. A sweet young lady even offered to drive 40 minutes one way to bring us fans when the air conditioning in the hotel went out. And one of my friend's best friends worked at the hospital and she stopped in to bring hugs, best present ever!

And a visit from my nephew and niece so I could give them hugs and meet my new baby great nephew, Carson! They've been living in Delaware for about a year and I have missed them terribly!! Isn't Carson BEAUTIFUL?? I know I'm biased...but those cheeks!!

The staff at the hotel we are staying in has been lovely to us. One of the housekeeping ladies we adore saw that I liked hot tea so she brought a beautiful tin of Chinese hot tea for me. Braden always blows her kisses and says hello to all of the folks working each time we go through the door. And they always ask him how he is doing.

It has been shocking how many people we pass in the streets stare (that's the norm) and then smile and say "Hi" to the bald little boy (which is NOT the norm)

Just yesterday, one of the men working at a sidewalk cafe outside Comcast Center was talking to Braden from across a fountain and asked him if he would like a fresh cinnamon roll.  And the police officers patrolling the streets always stop in their steps to say hello to Braden. (I thought they were supposed to be a especially tough bunch). Hmmmm....

The guys running the backhoe outside of the hotel digging some sort of trench for new pipes stop and say hello so they can talk "backhoe stuff" with Braden every time we go past them each day. Kind construction guys? That doesn't seem very East Coast.

A Kansas City friend called a friend who works with the 76'ers and they invited Braden out to the practice facility to play basketball. That's his love...his favorite thing to do in the entire world. And he got to shoot hoops with Greg Foster and some other coaches, he got to sit in the head coach's desk chair. Braden even played a game of "base-ketball". They made it up using one of the pads they use to block in practice and a basketball. It was awesome!

base-etball

We are now officially the biggest Sixers fans in history, FOREVER! 

Then one of the sweetest ladies I have ever met, Mary, even drove us back to the hotel so we didn't have to get another germy cab. WOW!

There is no way to express how excited Braden was about that hour spent with the Sixers!! Truly a dream beyond our wildest imagination!

On our walk yesterday, we saw a HUGE ladder firetruck outside the Courthouse near Logan Square and Braden was flipping out. We stopped to take a picture and the fireman who was in the back part of the truck near the ladder asked if he wanted to get inside the firetruck.

I quickly threw his mask on and they lifted him up to the main cab...and he got to honk the big horn. Yet another group that was not ranking so high on the "tough guy" scale.

As we walked away, we passed a group of homeless people who are often outside the court house. We pass them every day.  Seeing homeless people in Philly is, sadly, not unusual. The city is filled with people on the streets trying to survive. We generally just try to walk past but Braden is a social dude and always wants to say hello.

We walked past three men sitting near each other under a tree and the man in the middle yelled, "HEY!! SHORTY!!! HELLO!"  We slowed, waved, smiled, said hello, and kept walking...

and he then yelled,

"GOD BLESS YOU LITTLE MAN!"

Seriously?

A homeless man yelling "God bless you little man" to a bald 9 year old.

I cried...right there on the sidewalk in front of all of them and only narrowly managed to eek out the words, "God bless you!"

You Philly Pholks aren't nearly as tough and hardened as you want your reputation to be,

and I'm here to rat you out.

You are (take a deep breath and brace yourselves)...

nice.

In about 48 hours we are leaving Philly and heading back home after 2 months of city life.  Leaving with a little boy who feels well and has baby sprouts of hair and, to date, no sign of cancer.

Home to our friends who have been madly supportive, kind, loving and amazing for the 6.5 years we have been battling. Friends who were kind enough to send flowers to brighten our day, a box of Easter goodies for Braden (and me) and a Mother's Day package filled with cards and a big surprise, countless texts, posts, and messages. They have even sent wine and vodka. BOOM BABY! Man I am one blessed lady to have such amazing friends! :)

Heading home to daddy, big brother Zach (who donated his bone marrow to try to save his little brother),

our beta fish and kitty.

Home to our own beds, courtesy of a wonderful Kansas City businessman who is flying us home on his corporate jet because Braden cannot fly on a commercial airline right now due to the immunosuppression. Unreal!

Home...the most beautiful four letter word in the universe.

But we are leaving a place that feels a lot like home.

Thank you Philly! We will be back. In the meantime, we will miss you.

And we thank you for being so....

nice.

(get used to it...I'm going to keep using that four letter word to describe all of you "bad ass" Philly people) :)

You are beautiful!