Monday, March 31, 2014

who?

I get a strange feeling sometimes as I meet people.....
In particular, the people who, after just meeting me say this...."I feel like I already know you."

When I started this blog a few years ago,
it was mostly just so I had an outlet.....a place to go, to vent......to write.
I never thought that people would read.
I never thought that SO many people would read.

As the years have gone by, and our story has told itself to me......I have tried to tell it to others.
Always trying to showcase the highs.....and the lows.
Pounding at this key board through tears.......
typing quickly with excitement......
and hitting the publish button even when I didn't feel as though anyone would care.....

I hope that I have always shared my faith....
that God has always been given the glory for things accomplished......hurdles jumped.....

I pray that through me, you are really seeing what He can and is doing.....

In just the past week,
during errands and other encounters......I have heard those words.....
from strangers.
From people I haven't seen in years.....

I thought about it for a long time last night.....
Am I......the person they  think I am?

Am I?

There is less than a handful of people that I have let into my life physically.....
just a few people of whom I trust,
a couple people that I see face to face......

but,
I have never let that stop me from sharing on the blog....
writing things here that may be hard to say out loud.

If you knew me while I was growing up,
especially during the teenage years....
I'm sure you have some stories you could share...(lets not though k?)  ha ha
There were so many wild shenanigans that I was a part of.....
crazy times,
terrible decisions.....
seriously.....
the list of crazy is a mile long.....
I look back now and I am not proud of that girl......
but......
That crazy girl grew up.
She learned so much from mistakes that she made......
She took the poor decisions and the terrible choices and channeled that energy into being the best wife and mother that she could be......

Circumstances.
People....
life.

All of those things help to shape me into the woman I am today.....
and I have a long way to go yet......
But God is working in me.....
He is shaping every inch of me......
and that is a big job.

There are many lessons that I hope to pass to my children.....
honesty...
integrity....
courage....
compassion.....

One of the biggest things I hope to teach is the importance of being a good person.....even and especially when no one is looking....  Knowing that although someone may not be watching...your every action helps to form your core of self.

Dishonesty,
anger....
hate....

These things change who you are....
and one moment of losing control impacts many moments to come.....

If you let negative things and feelings build up inside....
if you act upon these things.....your shape is changed.....
one inch at a time....

Being your best self when you are alone.....
when there is no one watching....
no human to impress....
that is what builds you up.
Shapes you into a person that is worth being.
Makes you comfortable in your own skin.....
Allows you to breathe because you aren't trying to hide who you are.

I don't know what people truly think of me......
but I do know that who I am when I type is who I am when I don't......
and having this blog has given me a large sense of accountability......
I have to be the things I say.....
because otherwise.....the things that God is doing in my life will go unnoticed....
Our story will change from being about the answered prayers and miracles to being about me.....and it never was....nor should it ever be.

Nothing that has happened to me, to my family.....has been through my own doing.
I can take credit for NOTHING......
besides following when I thought God was leading.....
I cannot raise my hands in victory over one mountain climbed.....because I was being carried the entire way......... by Him.

So,
Who am I though?  Really?

Well......I think of myself as an awkward, silly person.
I cannot dance.....
love to sing.....
Cant live without orange juice or coffee.....
love all things sweet....
can down an entire custard pie, by myself in one sitting.....
I like to take pictures of EVERYTHING....all the time.
I have a license in cosmetology and instructing cosmetology....
decorating projects are my favorite things to do and the most effective activity to take down my stress level.....
I was engaged to my husband after only three months....and we have been together about 10 years...
I married at just 21 and have been through some very difficult things with my husband and never once regretted our decision to love each other.....
I am a fan of anything sentimental.......
I love surprises.....
but hate unannounced company....
I am the worlds worst at spelling.....
often awkward in social settings......

There are so many things that you may not know about me......
and that is just fine!
Because.....my hope is......... that the things that are important show in my words.....
That when you think of me you think of faith, love of God.....
all the rest will fall away, but the love of Him will remain!!!
At the end of the day, I am just a woman, a mother.....a wife.....
and the only important thing about me is who holds my heart......

Who are you?
Really?
I am choosing to focus on being who I want to be....
all the time!!







Monday, March 24, 2014

Rhythm

There are moments in life when I just say to myself......."What in the heck is wrong with you?"  I have been having so many of those moments here lately that I am embarrassed to admit it.....

Moments where I am staring at my newly chubby five year old boy and thinking about how thankful I am to have him next to me.....but struggling to smile anyway.

Moments that are filled with so much guilt and loneliness......and all out despair......
moments of feeling as though there is not one other person in this entire world who could understand......

The guilt is the hardest.......
because I should be happy.....
and I am......
but not all the time......

I remember that Joy is always inside of me no matter how I feel.....
That truth and love of God keep me grounded in security.....but I am still human. and humans have to deal with feelings.....

I cannot keep my footing at the mountain top every second of every day.
although I do try......
the valley's find me.

I do find happiness in the small things that others may pass by unnoticed....
the things that Parklen does on his own....the things he couldn't do before.....
I smile when he throws a fit because it is the strongest fit I have ever seen each and every time......
I smile when he gets mad at me or anyone because he has the strength to stomp away.....

but the guilt comes.....

The guilt about the times when I am not smiling....
the times when I feel so sad.

The sadness is so hard to explain,
and I am certain that, unless you have experienced something similar than you may not understand......

Sadness.....
Sometimes you don't have a real reason.....
It comes just because.....

because you are stuck....
because you tired....
because you just cannot find your rhythm...........not quite yet anyway.

I do not enjoy being stuck.
I do not enjoy being anything less than my best.
I find comfort in the little things for now,
holding onto each one and piling them all up inside of me as I wait to get these bigger things under my grasp.

Rhythm........

I thought I was so alone until I received a comment on my last blog from another parent.......
a bmt parent.
One that I have never met.
Home for a year now and just now finding their own rhythm....
Coming to the other side of the struggles that are right now staring me in the face.....

I have always been honest about the struggles of our family.....
and although the feelings I have now are not as you would imagine....
I don't want to hide them.

I am facing uncharted waters....
this is a place of where I have never been.....
and of course, when people say... "I bet you are so glad to be home..."
I am.
but the answer to that question is so much deeper than, "yes"

I'm glad to be home because my baby is still alive....
he is thriving.
I am glad to be home because my entire family sleeps under one roof.....
I am glad to be home because I have my space.....

but the pressures are so great.

I am terrified at the weight of responsibility that rests snugly on my shoulders.....
I am exhausted by the duties that come with keeping my glass egg safe....
intimidated by the new requirements.....

and I am completely broken by the fact that people think that I have this all figured out.
because I don't.
Every single day has presented me with a challenge that is bigger than I had faced the day before.

I often feel my stomach churn at the things that people say to me.....
I have to believe that they don't know how hurtful their words are.
I have to believe that people just don't know what to say.....and say something that they think sounds ok..... but the words have hurt me many times.
There are so many examples....but I will keep those to myself.....

Let me just offer this advice, if what you are about to say to someone in any situation that has affected their child's health and well being begins with the words ,"It must be nice....." don't say it.  Just stop yourself.....
If you are about to say to that person anything that belittles what they are going through....if you are about to voice any words that downplay their experience....just stop.  If you think that offering advice on things that you have never experienced is the way to go.....stop.  Don't try to find a comparison...I mean it.  Don't ever say, "I know how you feel."  Don't ever tell them how they should feel....  Trust me when I say, there is nothing that can compare to having an ill child....There is nothing that can feel the same as walking that journey, and it is different for everyone.

The best thing that you can say.....the most meaningful things to hear is, "you aren't alone."  "Im here for you."  "What can I do?"   but be prepared, because sometimes that person may not know what they need help with...sometimes you don't know what you should ask for.....  but the most important thing is this.  Follow through.  Be what you say you will be.  Actions are so much more important than words. Being a friend, a support.... doesn't always mean understanding.....it means caring for someone enough to help them even if you can't understand how they feel.....even if the feelings they have seem silly to you.

Our story didn't end.....
The transplant didn't set our life into pilot mode for the duration of this flight......

The transplant began a rebuilding of Parklen's body....his life.
It was the beginning......not the end.
Each day the cells inside of him are working to find their own rhythm....working to learn this new body of which they now live.
His immunity is still compromised.....

At the beginning of the weekend......we stepped out.
He had been stuck completely inside of the house for days,
hadn't felt the sunlight on his face for quite some time......
He asked to go for a walk.....
It took almost 15 minutes to get him bundled up, masked and protected.....
we were outside for maybe half of that......
but it was worth every moment.
Watching him walk down the street, even if it didn't last.....even if he wanted to get back home quickly.....it was worth it.
It would have been so easy to let him just run out for a moment.....like his brother.
So easy to say "okay, just this once......"

but.
I know, and I fear that the moment I let my guard down will be the moment that something lurking outside will find its way into his body....

So, I stick to these painful rules.....
I cling to the fact that my craziness has kept him safe during this journey.....
my choice to follow a list of completely insane and often hard rules has brought Parklen and our family to where we are today.......home.

I will get it.....
I keep telling myself that it can't be this hard forever.....

Things will come.
and one day I will wake up and be perfectly nestled into my own rhythm.....
I will look back on today and be thankful for this struggle and all that I learned from it.



Monday, March 17, 2014

hang on....

Sometimes in life you just don't have things figured out.....
even when  you are completely certain that you should.


By now I should be used to being home.
I should have mastered the daily routine of life at this point....

However,
I am not....
I have not.

I cannot seem to remember what average means.
What having normal life feels like.
How to be a mother....
at home.....

Getting up in the morning is hard in and of itself.....
knowing that the list of things that need to be done is long....
and that the number of which will be checked off.....is small.

We are contained with in our home most every moment of our day....Parklen, Phinlynn and myself.  Inside.

Parklen spent much of spring break this past week watching Paysen play outside through the window.....all of us knowing how badly he would love to join him, but how capable he is of comprehending the dangers.....

His knowledge of medical things,
terms,
scenarios,
consequences....
far surpasses most five year olds....even most adults.
His ability to grasp how fragile he is even when he feels better than he ever has....is amazing.

He would love to go to school.....
play with friends.
they fell asleep before bed time....and right next to their best friend....

He woke up this morning (crazy late, after a long night) and his eyes filled with tears as he realized that his brother was gone.
His playmate, here no more.....
spring break over.
Back at school.

We didn't do anything overly exciting over the break,
there was a Denver checkup....
a ton of Lego building....
and home projects galore.....

We would have loved to travel....
or see a movie,
even go to eat......
Those things will come.....in time.
But for now our vacations are with in our home......

The boys spent so much time together....
and there were times I thought that they would kill each other....
I could see the delight in Paysen's eyes as Parklen would chase him screaming and ready to wrestle.
How long has he waited?
How long has he wished for a brother that could play?

He wrote a letter the week before break while at school.
He explained to me that he started to think about how Parklen couldn't go to school.....how he must be so sad to be home all the time....he told me that he started to cry.
The letter made me cry.......
It was personal,
thoughtful...
and sweet.

As I watched them play I knew that things were falling into place....
that the time lost between the two will never compare to the memories that are to come.

I find myself struggling between the knowledge of things that need to be done.....for Parklen's safety and for my sanity....with the knowledge of how badly Parklen needs a playmate, and I am the only one around.  Trying to STILL unpack from the apartment.....and the move before we left....  Trying to fall into the groove that I know must be waiting for me.  The place where I will remember things....like to send my first grader to school in something green on Saint Patricks Day.....
Things like planning for dinner before its almost too late to eat.....schedules....chores....

I have been trying to distract myself with different things....late at night when the kids are in bed and I should be scraping away at my to do list.....instead I am trying to release some stress by doing projects.  Making jewelry, painting signs, sewing.....eating.

My favorite project of recent days was a newborn photo shoot I did over the weekend.  It has been so long since I photographed a child other than my own.  So many months since I have even thought about it. and it felt so good.


This blog is a random concoction of randomness.....nothing too specific to say, but lots of things to ramble.

It has been 140 days since Parklen's transplant.  140.  The time has gone faster than I could have ever imagined it would.....however, at the same time........it feels as though the last year has been closer to five....

Health is something that is so often taken for granted.....by us all.
When I look at Parklen I know that is not the case with him....
He is living and he is loving that.
He is learning how to find himself.....deciding who it is that he wants to be and all that he is capable of .

Can you even imagine all of the things that he will accomplish?
The places he will go?
The people who his life will change....

Sometimes you just don't have it together....
I do not have it together.
I don't know exactly how to get there either....
I know that things are not easier, as many think they should be.
I know that the pressure on me as Parklen's mother....as his caregiver are pushing harder than ever.....
I know that by the grace of God I will get to where I need to be.
I know that only time can carry me wherever I am meant to fall....

I will get it together.....
but for today,
I am just hanging on....
trying to do my best,
trying to smile with thoughts of how much further we are....
give thanks for where we are instead of where we could be.....
I just have to hang on.....







Monday, March 10, 2014

Right on track and speeding forward.....








We left for Denver yesterday....all of us.
The big boys are on spring break, and the rest of us five feel grateful for the added company.....


always a good view from the passenger seat when this is your driver :)
Sitting in the passenger seat felt better than I can describe.....
its been a while since I have been in that position......
Its been a long time since my eyes could search the horizon.....noticing the small things along the route.......having both hands free to soothe a baby, hand a snack......relax....

We took our time.....
big time.
Added a couple hours onto the already long ride,
making stops and disregarding the hustle........

In the hospital today,
we waited for the slow flow of the immune boosting drug to complete its journey.....through the long tubing and into Parklen's chest port....
a long hospital day.
We spoke with nurses and doctors....
catching up on the people we've missed.


Exam looked good,
Labs looked even better.
Numbers that need to be are on the rise.....
counts are good.
Doctor is pleased.

and so,
as has been the pattern during this entire process,
Parklen is exceeding expectations.

There were a couple down falls during his visit today.....
nothing big.....
a mishap with his central line....
and some trouble with his physical therapy,
but overall things were good.

Our clinic visits had been planned for every two weeks.....
We were told to expect that for months to come.

but today as the doctor completed his exam,
after reviewing his blood results,
upon wrapping up with his concerns.....
he posed an option......
Come in two weeks or come in four......
"Your son is doing great, I am pleased......I am comfortable waiting a month to see him if you are comfortable with that......  I trust you and your judgment to decide if he will need to come sooner."

The decision seems clear....
especially if you are on the outside looking in.
Of course we would choose to wait a month.....no thinking it over required.....
no brainer, right?
Wrong.

Do you know what it feels like to carry the weight of responsibility for a sick child?  It is like nothing else on earth.....  The load is heavy.......
Knowing deep down that any consequences of this decision would fall upon your shoulders....my shoulders.
Weighing the observations that I have made of Parklen....weighing the gut instincts.....
knowing all too well the risks and the benefits......

So,
allowing the happiness to seep through the cracks of the worry....
Letting the pure thankfulness of things gone right, trample over the the what ifs......
We choose to smile....

Parklen's next appointment is in April.
not in two weeks.....
not even in three....
but in four weeks,
one month....
thirty days.
Something we were prepared to happen sometime this summer.....
and yet,

His progress continues to surprise even the deepest of skeptics.
His speed of recovery refuses to slow itself.

Parklen's future is unknown.....
there is no data to say if his disease is gone for good....
we just know that it is gone now.
There isn't a case to compare his to....
He is in remission.
and he feels good.
There is still chances of his body fighting the bone marrow cells.....
graft versus host disease is still a possibility.
There is still months upon years worth of careful living....
isolation.
but each and every day that passes puts us one step closer to where we need to be.
and thank God for that.

We had some good visits with our Brent's Place friends this afternoon.....Phinlynn showed off her walking skills and the boys filled their time with much needed rough housing and giggles.....even soaking in some sun on the safe clean playground......have I mentioned how much I love these people? Really they are all amazing......

Back home we go in the morning.....
and we are going to enjoy this week together......
Devan's school is out of control busy.....and we miss him.  Having a few days of break will be good for us all......especially with the knowledge that Parklen is right on track....and speeding forward!!!

Here's to time together.....
time well spent.




Saturday, March 1, 2014

The first chapter.... after



Being a mother of a sick child leads to many things.....

It leads to a life filled with worry, care giving and sleepless nights that reach far beyond the typical realm of motherhood.....

Being a caregiver to a special needs child is the hardest yet most rewarding position I have ever filled.

I have woken up every day for the past 5+ years with a mission.....
a mission and a knowledge that someone else was depending on me for their survival.
more than the basic needs that us as humans require....
A constant awareness that his well being depended on my actions.....
The pressure of remembering every single medicine, 
every proper way to perform his countless treatments.....
remembering how to operate the machines that helped him breathe....
Keeping my eyes open a little wider than normal for any subtle changes....

A very difficult and very overlooked portion of having a sick child is what happens to you....as a mother......as a woman.

To prevent selfishness....you put yourself,
your needs,
your relationships,
your health....
aside.

You make a decision that you will do whatever you must to keep your child safe.....
alive......
and you do what you can.

During the process of years worth of care giving things have happened to me....
things that I didn't even realize at the time....and not even fully until they were strongly impacting my life.

I woke up one morning with chronic pain.....everywhere.
Pain that doesn't leave....
pain that consumes my entire body....
Headaches that refuse to take a day off.....

It has been years since I had a full nights rest....
Parklen, at five years old still wakes up every single night.....
the reasons vary....
sometimes they are important,
and sometimes he wakes because he is used to it....
because of the months and months of being in the hospital....
the nights with constant interruption....
the nights with nurses to play with and talk to.....
He wakes because some of his medicines don't want him to sleep.....

No one wants to talk about how horrible they feel.....
or how they are so exhausted that the thought of putting your two feet on the ground in the morning almost brings tears to your eyes.....
No one wants to bring up the fact that they hurt.....
When their child is suffering......
and so,
when your child is hurting and their world is consumed with pain....
you suffer in silence.

Over the years I have lost so many friends.....
I have lost relationships that meant a lot to me....
I have lost some relationships before they even had a chance to form into a friendship....
It is hard for outsiders to understand the constant cancellation of plans....
the refusal to have company to protect your child....
When you live in the average world these things don't exist....
a simple cough for your child is no reason to panic.....
In my world....
it can mean so much.

There is such a deep deep loneliness that comes....
when you live in a place that people don't understand.
and the more people try to relate to you,
the further away you feel.

The comparisons between mothering my other children and Parklen have no limit of differences.
They are all three loved the same....
but being their mom is different.....

When you live in the world of chronic illness.....
There are instances of bitterness that can arise....
bitterness that comes from listening to average complaints....
and wishing so badly that you had only those to worry about.
but, you have to push those thoughts from your mind.

I have had to make a conscious decision time and time again to ignore my bitterness....
to turn it into a feeling of gratitude for the ones that don't have to live what I have....

At this moment where I sit, right here today....
I have many struggles.

Over the years I have lost more than just a small piece of myself.....
I have lost a huge part of who I am.
I have sacrificed the feeding of my own self....my likes, my hobbies, my interests......
for the sake of something so much bigger than me.

I chose every day to forget about the things I wanted....
to bypass the direction I had planned for my life....
I made a choice each day to do all in my power to keep Parklen alive.....
all the while trying to balance the other needs as wife and mother......

and now.....
things are beginning to change.


Being home from Denver is so much harder than you may realize.
There is joy to be on this path.....
thankfulness for the obstacles overcome.....
and there is also so much more.....
There are giant expectations for a life lived better.....
Lingering duties that remain for Parklen's care.....
Still daily and moment by moment care giving and protection.....
and there is also silence.....
silence from a lack of company....
silence from being confined with in our home...
time to try and remember who I was....
and time to realize that no matter how hard I work to remember that young mother from five years ago....I will never be her again.

I cannot proceed with my days on this earth with out having been changed by my experiences.....
I cannot pretend that the days of heartache and moments of fear never happened..
I cannot take just this moment....and the knowledge of better days to come, and move forward.
I have to....I must, form a new self.
A self that is better because of what she has seen...
what she has witnessed...
what she has done.

I owe it to my family, to my husband....my children and especially to my daughter....
to be the best version of me possible....
To find my best self and be the woman that God created me to be.

but,
as much as I know this to be true....
I struggle.
because I do not know who I am.

I know that I am a wife,
a mother,
sister,
daughter,
a friend......
a child of God....
and beyond that......I am yet to be discovered.

I have yet to learn how to be the mother of three active children....
I have yet to learn how to balance Parklen's medical needs with his need to explore his new found health....
I have yet to learn how to take care of myself....
how to focus on what my body needs so that I can be here for my family.....

I have lost myself in a sea of uncertainty.....
years of treading water in this ocean that has been my life....
the depths of sickness...
the waves of fear.....
clinging to pieces of floating debris....
I have just now been washed upon the shore....
my toes tickling the sand on the beach of new life.....
my eyes squint in the brightness of the recent sun.......

I know not where my life will lead, 
I know not who I will become....
but I know where I have been....

I know that the future is here....
that today is yesterday's tomorrow....

I know that this,
the first chapter of finding Amanda will be a journey all it's own....

I know that each day brings me one step closer to who I am....
who I will be.
and how exciting is that?

Things are moving along in the post transplant life....
Parklen's health is great...
his spirit is good!
He is lonely and I wish so badly that he could have friends to play with....
in time.
For now, the position of friend is filled by his family...
and someday,
maybe not so far away...
Parklen will have play dates and sleepovers.....
and his loneliness will be no more....

Chapter one reads pretty simply....
a tale of hope,
a story of discovery....
and of all things new.
Finding the balance between working towards finding our new rhythm...
and the joy of living in the moment because each moment is a gift.....
Standing on this beach....
looking over the endless view of water in which I have lived....
survived.
I know that I can do this....
I know the loneliness will pass....
I know that the work towards being what and who I want to be pales in comparison to the work that has already been done....
I know that our future is bright.....

With each turning of a page,
I cannot deny my nerves....
but I cannot ignore the excitement either.....

because.....
the best is yet to be.