Wednesday, February 26, 2014

I write.....

I have been keeping my distance from the blog lately.....
the reason may not be a sound one....
but it is a reason nonetheless.

It started with a nonchalant remark.....
"Well, now that Parklen is home....I suspect you don't have much to be writing on the blog about   anymore."

The words weren't meant to hurt,
they were innocent enough...
but they cut me deep.

My life,
our life....
even Parklen's life....
is bigger than Parklen and his BMT journey.....

but maybe the rest isn't worth reading.......
maybe the rest of my thoughts,
feelings,
experiences.....
are to remain inside of me.

I have spun this over in my head for a couple weeks now.
and you know what?

I realize that there are a lot of people who read this blog,
a lot of friends, family and strangers that take the time to read the words what I write....
and I am so thankful for that,
but this blog started with two readers.....
my husband and one friend who encouraged me to start it in the first place......
two people....
and I wrote anyway....

I wrote and write because it fulfills a part of me that is so deeply inside that nothing else can reach it....
I write because the words have to get out....
because the force of them within me is too powerful!
I write because,
when nothing else is in my control,
my words are.

When I cannot change the terrible things that happen,
I can take them and carefully weave them into a story...
When I cannot contain the happiness that I feel....
I can paint a picture with my words.....

I write because it is who I am.
and although I don't receive a paycheck for this work that I do,
I am given the gift of fulfillment....

There has been so many things that have happened to me,
around me,
through me....

I have been forever changed through difficult circumstances,
through the experience of simple joys found only after deep heartache...

So.
I am still going to write....
I am still going to fill the pages of this blog....
because my life, our life....Parklen's life....
is still happening....

and in some ways,
it is only just beginning....

and I promise....
there is still much to tell.

This is only the forward of our new story....




Monday, February 10, 2014

A place......

When I used to entertain the idea of a bone marrow transplant for Parklen there were a lot of scary thoughts that ran through my head......
Of course there were the obvious ones,
    What if it doesn't work?
    What if he gets worse?
This is what met us as we checked into the apartment.....
    What if he doesn't make it?

There was also another question........
   How could I possibly live away from home for so long?
they have an amazing outdoor playground that is safe for kids like Parklen....
Add in a baby girl and this question was a whole lot harder to answer......

and then I heard about Brent's Place......

I have come into contact with a lot of different organizations, charities, non profits.......
None of them were just like Brent's.

Brent's Place was founded by a couple, husband and wife.....
two people......
who had a sick child.
Their son Brent didn't survive after his bone marrow transplant.....
but his legacy did.
The boy's first night in their new room at the apartment....

Paysen getting a birthday surprise......



This couple formed this incredible group of people and support.....
both of them can be seen many days working at the building,
  delivering meals to the apartments,
  working the front desk,
  helping to entertain children.....
  making their presence known, in a quiet yet selfless sense.....

Moving into the apartment was tough.....
we unloaded totes and bags full of our things......
all the while the unknown circling in our thoughts.....
it took some time to adjust to the apartment living....
there are rules different from home,
strict cleaning guidelines to keep the safe clean environment....
There are close neighbors.......
a place for eating blueberries....

a place to dance in the shower.....

a place to learn the "sumo stance"



a place to do science fair projects...

a place to rock your baby to sleep.....



A couple weeks in I no longer felt like I was living in a strange place.....
I began to feel a little bit more comfortable.

On the days that Parklen was in the hospital it meant so much to have a place to escape....catch my breath, if only for a moment.

Coming into a dark apartment, to find a meal prepared and waiting for me in the fridge.....meant I didn't have to skip eating for lack of energy......

Having a place to sit, without the beeping of monitors, or pressures of sickness closing in on me.....
meant I could keep my sanity a little easier.

Walking through the halls and seeing the staff, listening to them ask questions....not because they had to, but because they truly cared.......
made me feel less alone....

a place to be a brother....
There were times when I felt so alone down in Denver......my husband back home, my friends far away......
I made new friends.....with the staff, the people that keep Brent's going....the ones who work countless hours.....throwing themselves into a job that to them is just so much more.

The people who fill the offices in that apartment building were created to be there......
There are not just good at what they do,
they are good...
genuine,
amazing,
caring,
loving.......
and hilarious people.
They have endless actives and opportunities for the children and their siblings....including guitar lessons.



meeting lightening McQueen...

watching a magician 

a place to be a crazy boy....
or a crazy girl.....

a place for game time with the family!!

It meant so much to me to have a place to go,
to be able to go downstairs and visit with an adult human being......
to not talk about medical things all the time,
to laugh.

a place to learn to crawl like a champ...
Being the mother of a critically ill child can be all consuming......
you lose sight of who you are.
You forget how good it feels to talk about weddings, and pictures, and food.....
a place to learn how to stand....

As Parklen began to feel better, he started to form relationships that are very important to him.....
He started with one.....
and then began to open up to each of them in a way I hadn't seen him before.....

He got a kick out of sneaking up on each one of them to give them a scare.....a few times they were genuine screams.....

There are people there who would literally drop everything to help me out.....
and they did.....
time and time again.
a place to learn how to eat real food

a place to celebrate.....


a place to be spoiled....



Play room





always "safe clean"

games and movies....


They loved and cared for our family in a way that is far beyond what should be required......
and I miss them.
and so do my kids.....

We took a little bit of time almost every weekday to go and say hello.......
because Parklen and Phinlynn enjoyed it, but lets be honest.....it was mostly for me....
for a chance at a moment worth of that very important thing that we like to call.......friendship.
Simple....

There were many times when they tried to help Phinlynn take her first steps........
a lot on our last day especially because they really wanted them to happen in that building.....

There were games of tag.....
memory,
hide and seek,
coloring,
crafting......

There was the time when Parklen screamed like a maniac after surgery because he wanted to bring a recovery grape slushy back to Becky at the apartment.......

They bring meals to the families there three nights a week.....every week.
They have breakfast every Friday too...
a place to snuggle your baby sister....

a place for jumping....

a place for bonding.....

a place for snuggling......



Most of the time that we were there we couldn't participate in the activities that were hosted....
Parklen was too isolated for that many people,
but he had fun playing with the staff.....



Sean, the boss......although Parklen never did believe that you were the one in charge....because you were too "nice."  You let my son torture you with dart guns, beg you for putting time.....and use less than desirable phone etiquette with you.....you charmed my daughter with a beard like her daddy's and a smile that made her giggle......Thank you for being the head of a place so very amazing.....


Becky, with your dry sense of humor.....  You won Parklen over with your willingness to watch his boy choice in video games, and because he thinks you are "nice and funny."
Phinlynn, loves you.....probably because of the way you make such a big deal about everything she does and everything she wears.....


Allen, ohhhh Allen......you won us all over with your laugh....  I know you have heard that before...but it is true and anyone who has ever been in the same building as you would agree....  You were Parklen's best bud in Denver and Phin's dedicated entertainer...... You were my friend when I just needed you to be.....


Rachel, your ability to pick up on baby activity anywhere in the building is amazing.....your squeal of sheer delight every time you saw Phinlynn made me smile....Phin didn't mind either.  You won Parklen over with your arts and crafts and probably your habit of giving.....anything......everytihng....



Bridget....your humor brightened our day.  Your singing and guitar playing made us giggle....... We all know that Parklen was yours from the moment you fell off the chair during a very intense "memory match."  and your enthusiasm with Phinlynn never stopped amusing her!!!

Lynnda....you are the quiet one, but oh so lovely.  Kind with your words and amazing with your gestures.....coming in early to help me with Phin when I was in a pickle.....allowing Parklen to sneak behind you countless times to "scare" you again......

Fabian....the master of clean, the one who makes sure that the apartments are safe for the kiddos....the strong and silent type you are, but that didn't stop Parklen from loving you and giggling each time he saw you!

And Brittany, new to Brent's right before our departure.....but I am sure you will impact many lives just as the people who sit around you have......

There are others.....
they work behind the scenes and we weren't able to get to know them as well.....but they are still amazing.


I feel so blessed to have been given the opportunity to live in a place such as Brent's.....
a place where we were loved....
a place where we met new friends......
a place where we met families that were struggling through this medical world.....
a place where we saw many sad endings....
but happy ones as well.....

a place to have your first golf swing lesson....

a place to take your sister for a ride...








a place to play....


I feel so blessed that a couple....
took the pain of losing their son.....and came together in such a way that he will never be forgotten.....
creating a place where a family can be a family, in spite of a difficult circumstance.....
a place where they can breathe.....
a place to heal,
a place to live......
a place to call home when their home is so far away.....


a place to throw frogs on the ceiling...









I love Brent's Place and every single person that our family met there.....


No amount of words could truly express the pure gratitude that I have for this place......no amount of random pictures could show it either.  I have lived the other way, the way where you are stuck in a hospital room 24/7, I did that for years......and I cannot even begin to explain the extent that Brent's place has blessed our family, but I tried.....a little.

If you want to help other families like ours you can do that here......you can also read more about this amazing foundation!  This was the difference we needed to make it through this difficult process.


Moving out of our apartment was a little bittersweet......
Happy to be moving on to our next chapter,
one of health and happiness....
but sad to leave such an amazing place behind.


When we were finished packing up the cars on Sunday.....
we left....
Our apartment left empty.....
but our hearts left full.....