Friday, January 31, 2014

94

Today is day +94
94 days....seems like a life time......

This morning Parklen and I were snuggled up,
I was holding his hand as he slept away.....
As I ran my thumb back and forth,
I couldn't help but notice his tiny little fingernails peering out over the tops of his fingers....

Something seemingly small made my heart skip a beat.
Parklen has always, for as long as I can remember......had a habit of picking his fingernails, and fingers....

It was always his way to cope when he felt sad, scared or nervous.....
sad thing was, he was always sad, scared or nervous.
His fingers would often bleed....

Even when he was in the ICU, and he had a breathing tube in place....
when he couldn't move his body or speak a single word....
he picked his fingernails.
As soon as they would take his fragile wrists out of the restraints that kept him from pulling out his breathing tube if he woke up in a panic....the moment those white velcro straps came off....he would lift up his frail hands....his bony arms, that could barely move....would find their way towards one another....
and he would pick.

Today as I looked at his small, little boy fingers with nails that needed trimmed....I just felt so happy.

Happy because there is such a change in my little boy....
from the top of his head all the way to his fingers and toes.....

To think that my five year old has never felt stress free,
to think about him being so nervous and worried....all the time.
To think about him letting go of all of those feelings....

He gets to be a kid now,
he isn't worried about things....
Isn't consumed with stress,
he can breathe....literally and figuratively.

Such a small sign of such big things.....that have happened
.....and that are to come.



























We are with out our other half this weekend.....
Just the three of us......

Which leaves plenty of time for napping and cuddling....
and that is ok with me.....

Tuesday, January 28, 2014

Unforgettable.....

The past weekend was unforgettable.

I mean it.
I hope I will always remember it.
I pray that the moments of this weekend stay with me forever.....

I wish so badly that I could package the feelings of the last few days.....
the gratitude,
the appreciation,
the happiness.......
the simplicity.

I would hand it out to everyone I know,
even people in passing......

When they opened the package....
when they began to pull at the ribbon that held it together....
I would have to fight to contain my feelings of excitement....
When they peered inside...
what would they see?

Inside the package....
would be knowledge.
Inside the package....
would be understanding.

The world is so busy,
our lives move so quickly.
It can be so hard to see what we have.

As I lay in bed Thursday evening...
I felt the happiest that I can remember feeling in years.

There I was,
at home,
in my bed,
next to my husband...
My daughter asleep in her own room,
the boys hunkered down together.....

The weight of stress...and worry,
was lifted off of my chest.
Like a heavy fog on the sea, dissipating...
I felt like I could breathe.

I could not stop telling Devan,
"It feels so good to be home.....all of us"

After he fell asleep,
I stayed awake,
praying,
being thankful,
watching him sleep....
crying,
and simply feeling overwhelmed with blessings.

Do you know the blessings?
Do you realize how HUGE of a gift it is to be with your family?
Together?

Every day this weekend was amazing.
Every day was filled with average....
with normalcy...

And every day I was so thankful for that.

The package I would love to hand to the world....
to people I know,
to people I love,
strangers I meet...

That is what would be inside.

An understanding of just how amazing the normal is....
just how awesome the simple things are.....
A glimpse of a life where those things have never existed....
until now....
Parklen.

A look at a transformation from sick to healthy.....
and how that journey can make even the smallest moments completely amazing....

Parklen wasn't living his life and then all of a sudden got sick one day....
he was born that way.

The life he has now is something that he has never known.....
It is new....
It is fresh....

There was a moment this weekend when I literally thought I was going to burst with happiness...
we were all tucked snugly into Devan and I's bed....
The five of us....
There were tiny toes digging in here and there...
There was a handful of bony elbows and knees....
There was us....
Paysen snuggled in with his baby sister.....
Devan smiling in his sleep...
and as I looked at Parklen with his legs flung over his dads chest I just could not take it.....
It was too much.....
such a gift....
such a gift.

There was so much laughter this weekend...
Rough housing....



Parklen even got his first black eye...

Knowing how fragile life is, brings you to a point of appreciation and gratitude...
Realizing that any one breath could be your last.....
understanding that your children are not invincible....
and they may not be with you forever.....
it shakes you to your core.....
It speaks to your soul.

I wish so badly I could convey....
I wish so much that I could share this in a way that everyone could understand....
that I could hand you a package and you would see what I see....
I wish you could enjoy things in the same way as I have....
with out having to live the heartache first....


I never want to lose this sense of awareness....
However normal our life may become....
the last five years have dug their claws into my being....
they have left their mark.

I will never forget how it feels to have a sick child.
I will never forget how it feels to be separated from our family....
I will never forget how incredibly wonderful a weekend at home truly is.....
ever.

It was hard to leave home this morning....
but the drive to Denver was a little easier knowing that awaiting us was a building filled with people who care deeply for our family.....
and the thoughts of the weekends to come,
those sailed through my mind as I drove along....

How amazing was your weekend?
no really....
Looking back,
how blessed are you?
How many tiny memories were formed?
How much do you have to be thankful for?
Don't wait until you know the pain that causes the simple to be so precious....
Enjoy your small, wonderful moments....
Got to work on a ton of projects around the house.....LOVE!











Wednesday, January 22, 2014

+85

Today is day +85.

 You know you have been cooped up for too long when your five year old boy asks you to help him make a "relaxation place" for his action figures...complete with tiny pillows and blankets.....
because after all, even Batman needs to take it easy once in a while.


Things are moving right along.
Today we went to clinic for Parklen's routine checkup and blood draws.

Last week I decided that I should plant a seed....a tiny murmur of an idea.......

I have learned that if you sit back and wait for certain things to happen.....they may just not.
I have learned that it never hurts to ask for something.....anything.....
the worst that comes from asking is the answer no.
The worst that comes from not asking......never knowing.

So, I thought it through and decided I would ask.....
"What do you think about Parklen going home for a weekend?"

I wasn't sure what answer I would hear.....
but I was sure that I needed to ask.

They decided to think things over for a few days.....

Today, as I spoke with Parklen's doctor I couldn't wait to hear what he had to say.....
"You better go home for a few days.....all of you."

There it was.

Parklen is close to day +100,
and he is doing so good that he gets to go home....to his house......

This little trial run will help to make future decisions.....

Oh, by the way, did you hear what I said?
WE ARE GOING HOME FOR THE WEEKEND..........

I cannot contain my excitement,
I cannot contain my nerves.....

It feels like one breath I am shaking with excitement.....
and then the next breath is hard to come by as I feel like the weight of the world is on my shoulders....
the responsibility of keeping my little egg safe.....
the responsibility of driving him hours home.....
the responsibility is mine.....

I got this.....

It helps that Parklen's doctor is very conservative.....
he would be the first to hesitate if there were a reason to....

He says Parklen is ready for a little getaway....

I think he is right!!!

So home we go.....for a few days!
I can only imagine the things that will be this weekend!!!

Here is to miracles as they keep coming our way......
and after knowing what the lows can feel like,
after living in the valley for so many years
learning to adjust to the highs is a challenge....
but visiting the mountain top.....
spending some time this high.....

It feels amazing.....
I wonder if it would feel any different if we hadn't lived through the hard times....
and you know what,
I am thankful for all that led us here....
because I would never want this joy to be silenced, at all.
I would never want to think that going home for a few days was no big deal.....

and if the best is yet to be....
than I can only imagine what is to come.



Monday, January 20, 2014

What would have been.....



Today marks the 100th day from the original transplant day.
The original "day +100" had we not had any hang ups....

It got me thinking this morning as I stared at that number on the calendar.....
What would things have been like if it were.....

Parklen is doing so amazing.....
and I can remember the pure devastation of putting off the transplant.....twice.
I can remember feeling as though things were not going right....

What if the doctors hadn't found the abnormal tests that made them wait?
Would Parklen still be doing great?

What if we would have pushed through....
and the problems came up when it was too late?

What if Parklen were still in the hospital,
or doing poorly because of missed information?

It would be amazing if today were day +100.....
but, its not.

Instead, today is day +83.
and thank God for that.

83 days towards our goal......
and 83 days of doing great......
and no matter how hard is sometimes is to have to wait.....
God's timing really is the best timing and I am thankful I do not have to know what would have been.......

Exciting things are happening for us.....
and our future is near....


There is a beautiful home awaiting our return.....
one that is being prepared in the best possible ways for Parklen....
One that is just waiting to be filled with happy memories.....
healthy memories.

A safe place for him to continue his healing....

After this weekend I became very much aware that having two healthy boys is going to be amazingly different than our past......
Two boys that struggle to slow down,
rather than the one who watched mostly from the comfort of the couch....dozing off between tiny bursts of energy.

A brother.....little, but big....
learning what the word play really means.
Taking a crash course on being a boy....
Setting aside his controller to find adventure of his own.





There will always be the what ifs....
the moments of wondering.

What would have been had I listened early on when they told me Parklen just had bad luck?
What would have been had I not continued to search for answers for my baby?
What if I chose to quiet my inner voice?
What if his disease would have progressed more quickly?
What if this summer would have turned out differently?
What if we had been right when we thought Parklen was our last baby?
What if Paysen wasn't a perfect match?
What if?

These questions....
waste time.
These thoughts....
are better left alone.
Spending time thinking this way......takes away the joy of the moment you are in......

Because, not knowing what would have been makes me able to know what is.....
What is now,
what was yesterday....
And seeing my today,
my family's present......
makes the excitement for tomorrow amazingly worth every planned event we have missed.....

What would have been?
Who knows?

So thankful for timing that is greater than mine!!!!

The nice weather this weekend was such a blessing for the boys.....













Monday, January 13, 2014

often overlooked

There is a piece of our puzzle....
a part of our story.....
a character that is often overlooked.

There is a man.
A man who is mostly in the background.....
Rarely front and center.

A man who quietly works behind the scenes....
of course Devan wishes he was here for all the big things that happens.....

should he have dropped out of school?
should he be here every day?

The thing about it is this.....
Devan is where he should be.

Its true......he isn't here.
He isn't in the thick of the medical responsibilities.....

Its hard to be here without him.....
Its hard to often carry the load solo.....
but he isn't here......

Instead, he is home.

Home trying to give Paysen a little sliver of normalcy....
he is attending class....
he is studying,
doing homework.

He is spending time on something with little immediate satisfaction.
Day in.......
Day out.......

Striving for something that will come later on down the road.....

He isn't just working towards our right now.....
he is working for our future.....


Devan has his own struggles.
He has his own fights.

I am proud of my husband.
For taking the road less traveled.....
for pursuing something so big....
for pushing through during the hardest of circumstances.....

Devan....
Today began a new semester.......
and although you may not be front and center most the time......
although you may not be the star of our story right now........
you are the leading man in my life.

Thankful for all that you do,
all that you have done
and all that is to come.

Thankful that we don't have the perfect life.....
thankful instead, that we have the perfect for each other life.....


Thankful for the challenges we face.......together.
Thankful for the challenges we have overcome.....
Thankful that our struggles have brought us closer.

Thankful that our life is not easy......
because our struggles help us to shine brighter....

I am thankful for the stubbornness that we both possess....
the fact that we never give up on each other or our marriage.....even though we could pick from a list of reasons the world would say its ok to quit.....

Thankful for the woman I have become through being your wife....

Thankful for the way that I have learned to love through loving you......

I am proud of you.......and no matter what the world sees......
no matter what others say.....

To me,
you are never overlooked.


I love you......




Sunday, January 12, 2014

+SEVENTY FIVE

Today is day +75.

That does not even seem possible.....
really.

75 days ago I walked Paysen into surgery....
75 days ago I watched as a bag full of his healthy marrow was pumped into his brother.
75 days ago.....

and Parklen has never looked back.

There is nothing tragic to report in the way of Parklen, and that is a combination of amazing and awesome rolled together and sprinkled with tiny sparkles of unbelievable.

He is doing well.
He feels great.
He looks great.
He has energy.
He has days FULL OF LIFE.

He has found a new love for art....which he is convinced was transplanted with Paysen's marrow.
He has found a new love for music and getting his groove on......also claimed to be from the marrow.

Parklen is beginning to learn that healthy kids don't always get what they want......quite a process after an entire life of his way.......but completely necessary in preparation for entering the world as a healthy boy.....

He understands what germs can do to him.....
he doesn't argue about wearing his mask......
he usually has it on before I even have to ask on the way out of the door.....

He races me to the elevator....

Today we celebrated day +75 with a trip to a drive through car wash........sounds crazy, but its about all we can do.......no public outings for this boy...

Parklen has decided that he wants to be a good brother to Phinlynn just as Paysen is to him.....he has been taking this job very seriously.  Recently learning how to feed her, he plays with her, holds her, makes her giggle and always sings her songs....


When I asked him last night what his most favorite part of his new bone marrow was.... he simply stated...."I can play."
What are you thankful for?
What is the best part of your life?

75 days past a place where we never knew we would be....
75 days past Parklen's new beginning....
We are 75 days closer to his new life....
To a new life for the Henderson's.....







Wednesday, January 8, 2014

whats to come.......

Hi there!
Sure have missed ya!

I took some time from the blog.....
from a lot of things really....
I pretty much checked out for a bit....
ignoring phone calls, texts......
taking a break from it all.
It can become so exhausting.....just the simple things like explaining things over the phone.....
So, I decided to step back from it all......

I just finished a self given secret mission......

last weekend I ventured home....
to Casper, and returned to Denver this afternoon.

Paysen,
Phinlynn,
and me......

We loaded up the Honda and headed North.

We had moved in to our new home just two weeks before the kids and I moved to Denver in September.  There were boxes still in need of unpacking.....tons of things to organize.

As Parklen continues to do better and better.....
as his health improves quickly.....
we must prepare for the next step.


The next step.......

We don't know when they will give us the go ahead to head home.....with all of us......with Parklen.
We don't know for sure how quickly it could happen....
What we do know, is that the hundred day mark is fast approaching.
Any time after that is fair game.......

With Parklen feeling so well, I felt ok leaving him behind.....
It also helped that his dad had some extra time off to spend with him.

Five years,
five  years of Denver trips....
I have never once left Parklen in Denver.
I have never left him here.
and then, 5 days ago.... I did.....

It was so hard to drive away......
it didn't help that he was crying......
it was something totally new for him too.

I made the decision to keep the trip on the down low.
I told no more than just a handful of people.
I knew that there was so much to be done....
that time home was limited...
I didn't want company,
I didn't want the pressure of seeing everyone...........or anyone...really.

I managed to sneak home and back and running into only one person.......

There were two people that came over to help me organize.....
and that was it....

I have to tell you,
being home felt AMAZING....
the only thing that could have made it better would have been Devan and Parklen there too....

I wasn't worried as much as I thought I would be about Parklen......
Devan took care of things.
It was a good opportunity for him and Parklen as well.  Over the years their time together has been limited.  They haven't had a lot of time alone....because I have always been there.........hovering over my glass egg.....all. the. time.

It was a nice break from the med dispensing.....
from the care.

A nice break from the hospital appointments.....
A nice break from PICC line flushes....
and blood draws.

It was a nice break from the apartment.

It was amazing being home with Paysen....
dropping him off at school, picking him up.


It was a strange feeling driving back down today.
almost harder than any other time I have driven that road before.....
After months away it was hard to leave.....my home.
It was hard to drive away from the seven year old I dropped off at school this morning....
the one who stood on the sidewalk with his tear stained cheeks....waving his hand.....and asking me to stay.


There was a light at the end of the tunnel.....a little boy with bushy eyebrows and a huge smile, waiting for me.....

As Devan drove away, Parklen began to cry.......he told me he had the best time with his dad......

The last few days were good for us all....

going home made me so excited for what is to come.....

a time....soon, when we will ALL be home....together.
Until then, we push through.....stay the course.......and remember that the best is on its way!