better days to come . . .

IMG_6291The tests came back yesterday from our trip to Denver a few days ago.
It was confirmed that Parklen is infected with a strain of influenza.


In fact, he is infected with the very flu that we have lived in fear of for the last 10 months…..it was the one they warned us about before transplant….it was the one that we learned of had and has killed many transplant kids.  Yup…..its that one.

Thankfully enough……they think that he is far enough along after transplant and far enough along in the infection that he is going to be fine.

He feels bad…..but not terrible.  He can still play, and giggle.
He looks rough….but not awful…..

But after all of his results came back it was clear that, as the doctor so eloquently put it, “his immunity sucks.”  His counts are much lower than than they need to be to be considered as “recovered.”  He is fragile…..this infection makes it more so.
If something else came along in the midst of this flu, it could turn into a really big deal….

On Wednesday, we were given a list of privileges that Parklen could finally partake in…..
the test results changed that.
The privileges taken away.
Were back to where we were.

When I hung up the phone with Parklen’s doctor I just felt defeated.
All of the effort put in….
the time spent to protect….
the restrictions….
they had failed.

Because the Henderson form of outdoor adventure comes in the form of potty breaks on the side of the road.


It is a hard thing to understand,
even harder to explain.

Living your life mostly at home…..little freedom to go where you please.
To watch the many social media updates about others and their summer fun…..
To watch your six year old boy as he yearns to play in his back yard…..

We have to be careful.
Vigilant.
We have to keep our guard up high.
We have to continue on the path on which we are traveling.

It has been nearly six years that I have lived this way…..
weary of germs,
fearful of crowds.
Walking the line between safety and fun…

I have always been the one to cancel plans last minute because something came up with Parklen.
I have been the one who people stopped calling……
I have been labeled “overprotective.”
I have been labeled a snob.
I have been labeled unreliable.
I have been labeled so many things……..

Over time I have just come to accept that I cannot be everything to everyone.
Learned to live with the fact that I am going to let people down…..
That not everyone is going to understand.
and that is harder than I can convey…..

Things aren’t normal for us just yet…..
but we have come so far.

Parklen’s disease is considered to be in remission.
It is not his disease that he fights now…..
Instead, it is time……we fight with time as we wait for his freshly new cells to multiply.
We are waiting.
That is our fight.
He is fragile because of the transplant.

We may not be moving forward as quickly as we may hope…..
but we will get there.
We will keep fighting as we have been…..

There is something about not being everything to everyone….
I may not be present for many things out in the world….
I may miss out on girls nights and I may not be the first on the list for people to call for help….
but tonight, as I rocked my tiniest baby to sleep….as she stroked my arm with her tiny fingers…..and dug her head deeply into my neck…..I breathed in a sigh of relief….because I know that I am everything to someone…..at least 3 some one’s…..

and really….
what else matters?

Here is to better days to come……..

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Memories

IMG_0730The last few weeks have been very tough……
for the kids…..with seemingly endless colds…coughs and fevers….
for Devan…..finishing up his finals….
and for me……..just trying to hold myself together.

Often times, I may appear to have it together….
I may look like I have it figured out.
I may smile….
crack a joke…….
But more times than not…..the inside of me is struggling to match the outside….
My thoughts, my feelings….my worries, they are ever present, ever changing….
God is constantly at work within my mind….
It seems that the moment that one worry is removed….another quickly moves in to occupy its place….

As we prepare to leave for Denver tomorrow, I am flooded with emotion.
I find myself concerned….
worried about whats been causing random fevers in Parklen….
worried because the coughing won’t stop…..
worried because, no matter how hard I try…..
no matter which precautions I take….
it hasn’t been enough.

I have failed.
I have been unable to keep the sickness out.
Something made it’s way past…
Past the barrier of Lysol and bleach……
in spite of the cleaning….
straight through the filtered air….

and not only did it get in…
it has failed to leave.
it has lingered…..
whatever it is…..

As I was listening to Parklen cough this evening, my mind went to another time…..

a year ago.
2013.
We had been going to Denver for monthly treatments and check ups….sometimes we were there twice a month…..
it was our routine.
I had watched Parklen quickly fall into a deeper pit of sickness….
I had held him through tears, and treatments….
and, in spite our greatest efforts….our deepest prayers….he was becoming more ill with every passing day.

Last year….
It was the “June” appointment that changed everything.
It was the 6th monthly visit that turned our life upside down.

Parken was struggling to breathe,
he had been for a while.
With each pull he made for air, his eyes filled with despair….
He could go no longer than a couple of minutes without wearing his oxygen….
He was swallowing over 20 pills a day.
He was spending hours a day, doubled up in pain…..
and we head down to hear the same as we always had….
“Stay the course and hope something improves”

Only that is not what we heard….
instead, it was a trip filled with terror.
I left the appointment full of despair….
as we laid down to sleep that night, my hand never left Parklen’s chest.
I drifted in and out of sleep….failing to allow my body to relax.
I could just feel it….
something terrible was about to happen.

The plan was to return early for more infusions…..
as the sun began to poke through the clouds….
my world began to shatter.
Parklen sat up in bed and began to vomit……
for no apparent reason….
and from out of nowhere.

Parklen last June

There I was,
alone in a hotel….
with a 2 month old baby…..
and a small boy who was so sick….
I swallowed my fear,
and loaded the baby and the vomiting five year old in the car.
We drove the few blocks to the hospital and I rushed into the ER.
The frustration began to build as I waited for a room for my son…..
No one could see past his shallow breaths and dipping oxygen levels…..
they failed to listen to my concerns over his vomiting…..
I was all but shouting…. “there is something wrong with his stomach…”

Quickly he was admitted into the ICU.
They worked hard to stabilize his breathing…..
Once he was “under control” things seemed to stand still.
Devan headed down that day and stayed with Parklen that night….
I slept on another floor in the hospital with Paysen and Phinlynn….

When i returned to Parklen’s side the next morning I was greeted by news that Parklen’s abdomen had been growing steadily overnight.
My heart sank because I knew that my feelings had been correct.

Parklen had a hole in his bowel….
poison was leaking throughout his abdomen….
and he was rushed into surgery.

After meeting with the surgeon, my fears were amplified….
they didn’t know what would come of the situation.

That “June” Denver trip forever altered our path in this life…..
One thing led to the next and Parklen ended up in the hospital for a month…..
We left the hospital with a child nearly 12 pounds lighter….
an ostomy bag…
a fragile being….
an uncertain future….

I cannot push these memories from my mind.
They are living there….in the forefront.

As we prepare to leave for our June appointment tomorrow…..
they are there.
Thoughts of days passed….
moments of memories so dark….
Visions of meetings with doctors,
frozen in my mind….
I can see Parklen on the ventilator for the 4th time in his short life….
I can picture his desperation…….
I can see it all.

and the pain is fresh…

As I listen to his cough,
as I peer at the thermometer showing the low grade fever….
and I wonder what this trip will bring.

Pray for Parklen, when you think of him…..
Pray for us.
Pray for our trip….

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Feva….

IMG_4351Parky hasn’t felt great.
Started slowly……
increasing every day over a weeks time…..

Seemed like a cold.
Looked like a cold.
Had a tiny fever the other day…..
and after a trip to the doc, we all agreed…..it was probably a cold.

Yesterday as he said, “mom….my eyes feel like they are on fire.”
I quickly reached for the thermometer…
as I peered down at the result I literally could feel my stomach jump into my throat…..
103 degrees……
It could not be………
another check…….
it was.

There was a small sense of panic.
He didn’t look terrible.
He didn’t act like a kid with a fever…..
but there he was, with a fever.

I followed the rules…….I called Denver.
and I swallowed hard as the words came…..”take him to the ER.”

I have worked so hard to keep him safe…..
the very last thing I wanted to do was march him into an emergency room full of sickness…..

I loaded him up in the car and my stomach was just in knots…..
tied up with thoughts of days passed…..
twisted with memories of what once was.

How many times have I driven Parklen to the hospital?
How many times has he scared me with a fever?
countless…….

It has been 209 days since his transplant……….
We have been home for months……
and no big scares since we moved back.

He had made it this far…..
without an incident…..

But no matter how much time has passed, the memories and the fear of fevers is fresh……..
The days spent in the ICU….the moments spent watching him unable to breathe….unable to speak….the minutes and hours worth of waiting during emergency surgeries……
They all started with a fever.

After hours spent in the cold room,
after tons of communication between our home hospital and Denver….
After a dose of IV antibiotics……
After pictures drawn,
movies watched….
After snacks eaten and juice drank…..
We were sent home…..

No certain answers…..

But the little boy, who raced me to the car…….
and giggled all the way,
erased my fears….
and quieted my worries.

We still don’t know what caused the fever…..
but today, his temp was normal.

It is so tough to have pieces of your heart walking around in the world…..
to love another bunch of humans more than your own self…..
To realize that very little is actually in your control.
Motherhood is such a gift…..
but on days like yesterday…..it can be heavy…..
It can be hard.

Phinlynn is feeling crummy…….
and I am fighting like crazy to stop the cycle of sickness under this roof.

I am so thankful for the power of prayer.
Thankful for friends who show support in many ways…
thankful for days that remind me of where we came from.
Thankful for quick resolve…
for chocolate,
for coffee…..
I am thankful for Clorox….
for Lysol….

I am thankful for months with no fevers…….
and thankful for today.

I am thankful for a little girl who loves puddles…….
and pictures of her and her daddy…..
even if they have not one thing to do with Fevers…….

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Nine years will make you………jump, jump.

IMG_4255You know how they say that opposites attract?
Its been said time and time again…..
I live it.
Every. Single. Day…….

I am married to someone who is different than me in most every single way.

He lives on the wild side,
I like to play it safe….

He leaves things to chance….
I like to make plans.

He is completely crazy…..
seriously, he is.

We even each other out…..

Devan pulls me up to the top of the cliff,
and I ease him back down to the ground a little…..

With us together the scale is even…..
I cannot imagine my life with out Devan pushing me past my limits….

Last week we had our anniversary……
Devan made plans to take me away……

It is a big deal for me to leave my kids……
It has been years….were talking Parklen was about 2 when I left him for a trip last……
and Parklen got sick while I was away and ended up in the hospital the day after I got back…..

Devan took care of the deets and, for the sake of my sanity…..and for the love of my husband…. I agreed to run away with him…..
………..for the weekend.

Well, most couples might’ve had relaxation and zen to look forward to on a weekend getaway…..
Devan does not roll that way.

stopping for these donuts…..YUM

He took advantage of our time together and arranged for a giant slice of crazy…..
He set up a little bit of adventure…..
Romance?
Not in the typical way…..

What says I love you like jumping out of a plane?
Nothing.
Nothing expresses anything in the exact same way as jumping (falling) out of an airplane at 18,000 feet above sea level…..nothing.

I would love to tell you that I was totally stoked for the trip…..I wasn’t.
I hate heights…..
I hate flying…..
I hate adrenaline…..
and, according to a certain videographer, I must also hate fun…..

but do you know what I love?
Devan……
and because of that, I agreed to give it a shot.
(Not before reading online reviews and safety stats….
and realizing that, they actually take 80 year old people that partake in this wild sport.)

Lets talk about the drive to the facility…..
I entered many different emotions….
fear,
anger,
fear,
fear,
fear…..
I was crying my eyes out.

Then we arrived and checked in,
more crying.

We waited for our turn….
cry,

cry,
cry……

I cried more that day than any in recent history…..
The weather caused a lot of delays and so I was allotted extra cry time…..

As we loaded the plane, I quickly realized that they were seating me directly in the front of everyone else on the plane……the closest to the door……
The realization hit me like a ton of bricks,
I would be the first one to “jump” out…..
fear.

I looked back at Devan who was seated at the back of the plane and had a moment of complete apprehension and panic……
before I could back out the plane was in the sky…….
We soared higher and higher and my panic rose with the altitude…..
My legs were shaking uncontrollably….
My stomach, in knots…..
My mind……..racing.

Jumping out of that plane was the absolute scariest physical thing I have ever done.

I barely remember the moment that began the free fall….
but that’s what can happen when you hit the sky and begin falling at 130 mph…..

The brisk air takes your breath away…..
it is loud,

and it feels as though you might be floating…..
There isn’t a steep feeling in your gut like you would think….
You don’t feel like you are falling……
but you are….
Your cheeks make friends with your ears,
your eyes scramble to study your surroundings.
And, if you are like me…….your hands find a doggy paddle position and you begin to “swim” through the air………….(I am such a dork…..I cannot even look cool when I am doing something risky)

When the parachute makes its way out of the pack, the beauty begins….
It feels like you are just enjoying a nice stroll through the air…..
it is quiet.
and it feels as though you are the only human in the world……well except for the guy that is attached to your back….

As I landed safely on the ground I could not help but love my husband just a little more…..

For being so crazy….
For bypassing the normal romantic gestures….

and soaring me high above the earth to experience something that I would never have done had it been up to me…….

The rest of the weekend was amazing…..
Eating, laughing and just enjoying the company of one another…..
There is something completely wonderful about stepping back into the role of being “just” a wife, for a time………

The kids were taken care of and loved while we were away……
and the time we had was needed, appreciated and will be remembered FOREVER.

This is us after our jump

 xoxoxoxo

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Our marriage…..

IMG_3477
I was young……
20 years old……
10 years ago this week……….
Working in my hometown and living on my own……
Thought I had all I needed……
That’s when I met the man of my dreams….

Tall,
dark
and handsome……

Quiet,
funny
and smart…….

Strong,
adventurous
and just a little bit crazy……

Life moved pretty quickly from that moment on……
We were rarely apart…..

Three months after the day we met he asked me to be his wife…..
I didn’t see it coming….
He surprised me with his every word…..
as he asked me to spend forever with him…..

I was so young….
with big dreams.

I imagine I was thinking merely of happiness and bliss…..
I said yes……..
We were getting married…..

I had a hard time believing that someone like him wanted to be my husband…
but he did.
He had swept me off of my feet…..

The wedding planning commenced and within  9 months…… we got hitched….

It took just a couple of years before hardship started to head our way…..
but since then, it seems to never have stopped.

I would love to tell you that our marriage has been happy and free….
that we never fight and we never make mistakes……
but that just isn’t the case.

We have spent our time together fighting……
fighting with each other,
fighting with circumstances…..
 for our marriage…..
not easy, but always worth it.

We have had attacks year after year, month after month…..
sometimes seemingly, moment after moment….
and we have stuck together…..

We have survived……..
bad decisions,
terrible choices,
job loss,
friend loss,
loss,
a sick child,
financial distress,
mean words,
anger,
infidelity,
and difficulty…..

We have lived…….
happiness,
joy,
faith,
births….
triumphs,
fun,

I have spent time wondering if that 20 year old girl from so long ago really knew what she was doing when she said yes…..What she would think if she could have seen where her decision would take her….

I know that Devan has spent time wondering if asking that young girl to share his life with him was worth it…..

No matter which way I turn,
whichever direction I flip it…..
my answer is always yes…..
I may have been naive……
might not have had a clue what a marriage required…..
but some how,
in some way……..
I chose the right way to go……

The faith that was woven into my being as a child was there…..
and has been since…..
the knowledge that nothing worth having ever comes for free…..
that hard work pays off…..
and that saying forever should mean forever.
no matter what.

The vision of growing old with the same person who got down on one knee….
the man who held my hand into motherhood…..
the guy who has been next to me as I have grown from a girl to a woman……
that’s worth fighting for.

There is something to be said about enduring hard times….
holding tight as your ship blasts through the storms…..
the calm waters are much more peaceful when you know what the waves feel like….

Where would we be if our road had been smooth?
I have no idea…..

But I know that there is nothing that can tear us apart.
because…..
we have already lived through some of the worst….
and not just lived through…..
we came out of the other side…..
still holding hands.

I have learned so much through our marriage….
about us,
about faith,
about life…
about myself….

I have learned that God really can bring you through any storm…..
I have learned that love is an action, and a choice…..that you have to make every day…..
that companionship is deeper than mere feelings…..

I cannot say what our anniversary feels like for Devan….
but I can say that for me, it feels like a step towards forever…..

Some years I look back at the climb we’ve had and cannot believe we are still in one piece……
other years I look back and feel like the climb has gone by far too quickly……

Some times I look back to that young girl……
I see her smile at her future husband…..
I can still feel her butterflies,
and her heart flutter with a touch of her cheek…..
and I thank God every day that that girl said yes……
because the life she would have missed could never compare to whatever else is out there….

I thank God for the husband I have…..
for the time we have lived……….together.

I thank Him for the lessons we have learned,
for the triumphs we have seen.

I cannot help but be thankful for the people and things that have tried to knock us down……
because………here we stand……
and we are strong.

Happy anniversary to my one and only…..
9 years as husband and wife…..
ten years as best friends…..
and as long as there is breath in my lungs…..many years to come……

Thank you for loving me,
thank you for making me laugh……
and for wiping my tears….
Thank you for our amazing children…..
Thank you for seeing me through the tough times….
for seeing my beauty when the ugly was much more vivid.
Thank you for challenging me to be my best, even when I would have settled for less…..
Thank you for trusting God.
Thank you for sharing your life with me…..

Love you.

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Mothers Day………..

IMG_6001

 My Mother’s day began in the best way possible……
The small voice of my seven year old whispering, “Get up mom…..your Mother’s Day breakfast is served….”
I walked to the table to find a plate of food next to a note written on a napkin…..
     “I love you mom I hope you enjoy this breakfast.”

He had made me a hand written card that he gave me last night because it was, “Mother’s Day Eve…”
The card contained a list of thanks for things I do…..and words of love.  It also contained a wad of cash from his piggy bank…. he smiled as I took out the money and said, “I couldn’t go get you a present but I wanted to give you what I had……”

Seriously?!?!?!
This kid melts my heart.

Can you believe his heart?

He is so giving……

He is so amazingly pure in his intentions…..
and he was so incredibly excited about Mother’s Day….
He just wanted to make me feel special, and he most certainly did.

A friend said to me today, “I think Mother’s Day takes a new meaning after hard times- more than cards and flowers. I think something deep down knows the truth and honor of motherhood, and the soul celebrates.”
  This is so true……and there is no amount of flattery, gifts or cards that could take the place of time spent with the people who make me a mom and the deep down knowledge that these tiny humans appreciate me…..love me and make me a better person.
There is something to be said about pain…..something that I will never stop saying…..it makes you see things often overlooked…..it makes you find joy in the small things…..

Today was just another day….sprinkled with just a little extra glitter….
We cleaned, we played, we had things to do….Devan had to study…..We had meals, medicine, and every day life going on…..
But I like to think….. that in this house, every day is Mother’s Day….because every day I am a mother…..and every day I wake up and decide to be a mother…..not for recognition, not for praise, for cards or for flowers….but because there is nothing more deeply fulfilling than the position of Mom….
and these children make life worth living, even if they never said “thank you.” Even if they never realized a thing I did for them…..I would do it any way……

I love being their mom.

I love the tiny moments woven into the chaos…..the ones that make me catch my breath….
the split seconds when I feel like my insides will burst….

I love the moments when I sit down at the end of the day….exhausted and worn….and I reflect over the day and know that I would not have it any other way.

Success is not measured by college degrees, or money made….
it isn’t calculated by the clothes you wear or the car you drive…..

Success is measured by the life you live and the lives you share…..
It is calculated by laughs and tears……
It is sitting down in silence and having so many memories from one single day that your mind nearly bursts at the seams each and every night…..

Success is the ability to appreciate the simple.
To know that always working toward tomorrow robs you of today…..
Seeing that simplicity is life in it’s richest form…..

That tender moments can be found beneath the ceiling of a blanket tent…..and over shared peanut butter ice-cream…

I am more thankful on this day than I have ever been on any Mother’s Day before…..
for about a billion reasons…..
For lessons learned….
For life….
For healing….
For children….
For doctors….
For sleepless nights….
For whispers in the dark…..

I am thankful for the realization that not one single day is enough to celebrate motherhood….
and I am thankful for a 7 year old son…who has shown me with his kindness and generosity……that even though there is piles and piles worth of failures….my efforts are not in vein……it has happened in some way or another…my children are amazing…..

and Thank God for that.

I hope that every mother had an amazing day….
that they have found their own groove in motherhood…..
that they realize, that even if not one person acknowledges one thing that they do…..God sees.
and He is the only audience that really matters. :)
That they don’t compare themselves to another……but to the woman they were the day before…..
Happy Mother’s Day!!!

*disclaimer…..yes I returned his money to his piggy bank. :)

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Denver tripin’ it

IMG_5935The two littlest littles and I just returned from a trip to Denver……
It was rather quick.
A couple of appointments spread over a couple of days is an easy task…..

Would you like a cracker?!?!?!?

It isn’t enough that the staff at Brent’s Place took care of us through the entire Bone Marrow Transplant…….even before then and after….until we were able to return home…..
but they continue to care for our family once a month when we return for appointments.

They offered gifts and celebration for Phinlynn and Parklen’s birthdays.
Seriously?!?!?
This place still amazes me with their generosity.

A super duper Super Hero cake……..cape and all.

The kids were thrilled to see their friends….to have other humans to interact with was needed….
I don’t mind the interaction either….;)

Parklen’s appointments went well……
He looks good, outside and blood wise….
his counts are slowly rising……and he is traveling the road toward completion.
There is still much time between now and then, but every good report is a cause for celebration.

While in Denver I had the opportunity to see a mother…..
one whose daughter was one of Parklen’s favorite gals in the hospital.
She would walk by his door during his admission…..when Parklen was on isolation and had little opportunity for interaction…..she would walk on by….smiling and waving and Parklen would do the same……She often made Parklen want to get up out of bed and venture to the door for a little bit of socialization……always through glass….
This mother and her family moved in to the apartment next to ours on Christmas eve…..and were still there when we ventured home…..
Last week, this mother watched as her beautiful daughter lost her fight…….
This precious child passed away…..

When I saw this fellow mom, this woman…..I felt an astounding sense of peace oozing from her being…..as she spoke and told me of the pain that her baby had faced….as she recounted the struggle…she still smiled.  “There was nothing else they could do….and she is in a better place….”

My heart hurts for this family, and yet I find myself so thankful for encounters like this……
thankful for moments that keep me tied into the world of pain that comes with sick children……I always wonder what sort of things I would find stressful….or complain about had I not entered into the world of which I live……

What kind of things would get me down?  Spilled milk, missed appointments, meetings, burnt dinners, chaos, the like?

I thank God that He puts in my path these people that are living a true pain……a deep loss that I cannot even begin to grasp….because these people…..these parents, put into perspective this life….and everything in it.  Parklen is doing better….its true, but all of his pain would be wasted if I forgot about it…..if I only looked at what we have today I could never appreciate all of the little gifts….the small moments that are tied with ribbon and presented to me as his mother……

Can you be thankful?
Can you smile through pain?
Can you remember this mother and her family?
Can you think about them before you find reason to complain?
I know that I will never forget them…..their memory will sit next to the ones of other families that have crossed my path who have lost their children…..
The moms and the dads who go to sleep at night with out their babies……the parents who know the deepest pain……
and my prayer is to never, ever…….forget them.
To always remember…..
To always be thankful…..
 I think it is so important to be reminded of this time and time again…..because the flow of life can get us down….our busyness can suck us into a place where little things seem big….and blessings blend into our worries…..

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Celebration of six

1It has taken me just a little longer to get these words out of my head and onto this blog……
I have felt some pressure….
to get it right.

Because after all……
Parklen’s birthday this year was anything but just a birthday……

A year ago things were very different than they are today.
Last year…..Parklen was so sick.
He had always been sick…..but it was getting much worse.
He had declined pretty significantly between his 4th and 5th birthday…..having ups and downs…..
the years and years of struggle had intertwined with each other….it was impossible to compare the heartache from one moment to the next…..
at times….it was hard to see the light.

There are so many memories I have of Parklen in pain.
When I close my eyes, at any given moment…….I can see him hurting.
I can see my son unable to breathe……
I can see him with tubes everywhere…..
I can remember what it was like to look in his eyes……..
from age 6 months on….there was such a story behind those eyes…..a story that was far deeper and much harder than one could imagine…..

Last summer, after Parklen turned 5 things hit their worst.
A month in the hospital….almost all of that in the ICU…….emergency surgery….ventilator….infections….
he was so sick.
By the time we headed home from that trip it was clear that our lives had changed forever.
We left with a knowledge that Parklen could no longer continue living on his own…..
that the medicines and the treatments and the well wishes and the precautions….
they weren’t enough.
He was dying.
He had always been dying…..
his body was always fighting itself, and the harder it fought the stronger the loss……

In September we were handed a piece of paper…..one that required our signature….
One single sheet of paper.
One single sheet of white paper with black ink…..
The words were blunt.
To the point.
A summery of that piece of paper would go something like this…..
      Your child is in need of a bone marrow transplant…….a bone marrow transplant is very risky.
       It is very possible that your child’s illness will not be cured.  It is possible that your child could
       become worse.  The outcome of the bone marrow transplant is unknown.  Your child may not
       survive the transplant……your child may die.
At the bottom of the sheet……a place to sign.
A place for my signature…..signing my name to this?!?!?

The doctor in charge of Parklen’s transplant was never very good at sugar coating……anything.
He assured me every step of the way, that he would do his best…..and that he had no idea if Parklen would live.  That he knew for sure he would die quickly without the transplant but for sure that he could die either way…..

As I signed my name to that paper…..I could not help but think about all of the possibilities…..the weight of the decision was heavy…..very heavy.
Would my son live?
Would I watch him die?
Would he celebrate Christmas this year?
Would he ever have another birthday?

The transplant process was scary and overwhelming……
it is so apparent to me that one cannot grasp the severity of the whole situation……
that outsiders looking in cannot possibly imagine the pure and raw fear that comes….
that the difficulty of signing your child’s life away for a possible chance at saving it cannot be understood…..until you have walked that path.

When Parklen turned six this week, many things happened.
Parklen gave proof that no one can tell the future…..
that God can work miracles and save the un-saveable….
that fear can be overcome with faith that results in victory.
That true faith isn’t just hoping that things will turn out OK…..
it is letting go completely……and trusting that God will see you through no matter what the outcome may be.

When Parklen turned six he showed the world that sickness can be overcome…..
that success can come in the form of curls and love handles…..

In one day he became older.
He became something no one knew he ever would.
He beat the odds…..

When Parklen turned six, his momma cried.
because she didn’t have to say goodbye to her baby……
because she was watching her family celebrate him instead.
She cried because she is blessed….
She cried because pain has not passed her by……
and she can understand deeply the gift that another day is…..

Parklen may never understand the deep feelings of his sixth birthday.
He may look back at pictures someday and giggle at his curly hair,
he may admire his superman cake…..
he may never know……
how very blessed we are to call him ours.
and how his sixth birthday represented more than the day he was born, but celebrated the fact that he still lived……
Born,
and survived…..

Parklen is nothing short of a miracle.
I cannot say it enough.

Science said he shouldn’t make it…..
God said he did.

Parklen spent the day doing what he pleased…..
opening cards from amazing people who sent them from everywhere!
He blew out candles many time…..
He smiled…..
He laughed…..
He LIVED.

Six years old……
handsome….
in love with his momma….
determined to be more like his dad….
best friends with his brother….
protective over his sister….
buddies with his Nana…..
funny…..
loves to sing….
great at booty shaking….
stubborn….
smart……
creative…….
busy……..
adorable……
spunky……..

You can barely see his eyes when he smiles because his joy is so big……
You cannot contain his spirit……

He is six…..
and he is alive…..
He is alive and well…..
Happy birthday my beautiful son….
Happy birthday to you and thank God for the daily reminder you bring….
That heartache may fill the night, but Joy comes in the morning.
I love you….more.

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BIRTHday……part one….

IMG_5524Parklen is turning six tomorrow……in case you haven’t heard.
Its bigger than just a birthday for him….
bigger for me,
bigger for our family…..

It is cause for celebration….
a deeper type of celebrating…..
more than a
“happy birthday.”….

for reasons that are far beyond any sense of understanding I could convey…..
I promise a deep post tomorrow…..

but tonight….
I would love to tell you about our day yesterday.

Like his sisters birthday just a few weeks ago, we had to keep things low key.
but…….it was far too painful a thought…..to just sit at home…..
Parklen has been through so much….
far too much…..
Parklen has been struggling to live to his birthday….every. single. year…….of his life.
This last year has been even more difficult…..

I had called one of the movie theaters here in town to try and convince them to allow Parklen and his family a private viewing of a movie…..to no avail.
I mentioned to a friend that I would love to do something amazing for his birthday…..
she took my words and put them into action.  She made calls…..she made progress….

It has been years since Parklen has been to a theatre….
so long since he has been to a restaurant…..
When I go to a gas station to fill up he says things like, “I just wish I could go into that place…..”
I am not exaggerating when I say….he goes nowhere.
If it isn’t a doctors office, a hospital, Brent’s place or our home….he isn’t there.

Yesterday morning we woke up early, well, for a Saturday……
We loaded up in the car…..
and we headed down town.

even Phin was getting in on the action

giving “Spidey” some knucks

It was just us in the lobby of that movie theatre…..
not but one other person there…..
the one who allowed us the opportunity….

In we went…..
we loaded up on popcorn and drinks….

Parklen got to pick the movie he wanted to see.

The Amazing Spiderman II…….

It had only come out the day before…..

You could see the grin behind his mask….
that green mask that covers most of his face….
big, but not big enough to hide his pure delight…..

As we let Parklen choose his seat….my heart was racing….
When people put kindness into action it speaks to a very deep deep part of me.

It is so easy to say, “I’m here for you….”
it is easy to offer nice things verbally…..everyone is guilty of it…..using just words….
but when someone…..especially someone who doesn’t know us personally…..chooses to offer up a piece of themselves it brings tears to my eyes…..
Even as I type these words right now…..tears fill my eyes.

We filed in to the row in the middle of the auditorium….
just us….
no one else….

and we sat there for the duration of a very long, action packed movie…..
not a care in the world.

There Parklen sat…..
in public…..
snuggled into that theatre seat that was covered in a sheet and smelled of Clorox wipes and Lysol……
he felt important….
and maybe…..just maybe, if only for a little while……
he felt like an average boy……
just out to the movie with his family.
He didn’t have to wish he could go somewhere that day….
because he had.

We left the theatre a little different…..
a family touched again by kindness……
a family blessed to feel normal……
a family…..together…..
Parklen walking to the car with a poster in hand and memories to last a lifetime….

a little boy, the star of the morning…..
special…..
a celebration of a birthday so important……
a stranger, who will probably never be able to fully grasp the amazing opportunity he gave our boy…..

After the show we headed home…..
there were decorations, cake and gifts awaiting Parklen…..
His great grandma and his Nana drove over to watch him open his gifts….
he never minded that there weren’t friends over….
he never mentioned that he wished he had a bigger party….

I like to think that even at his young age…..
the years that he has lived…..
the years that he has suffered…..
have given him a glimpse at the things that are important….
all he cared about was that his family was there…..
that he had a cake to call his own…..
and that he got to be the star of the day…..

I will undoubtedly spend a good portion of my day tomorrow in tears……
over the emotional and amazing year we have had…..
reflection over where Parklen has been…..
over what has occurred in the past year…..
but make no mistake…..
I will not let a moment go by where I do not go out of my way to help Parklen to see the amazing miracle that he is……
Tomorrow will not be wasted…..
Parklen will wake up knowing how special he is……
and tomorrow when he lays his head on his pillow,
my prayer will be that he falls asleep overwhelmed with love…..
that he closes his eyes as a six year old and knows……that his birthday is more than just a day to celebrate with cake and goodies…..
That he will feel God’s hand upon him and that he will know…….that he is a miracle.
Our miracle…..

Paysen woke up yesterday with a headache and by the end of the day was being seen in the ER…..
being overly cautious can be exhausting….
but it is so worth it when I look at Parklen and the progress he has made….
Show me a fever……any fever, and I will show you to the doctor……
Poor guy……..
a few doses of medicine to treat Paysen’s infected sinus’ and he is back to his wild self….
In spite of this little attempt to steal our joy…..
we still had the best day yesterday!!!

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Done!!!

IMG_4086After a crazy couple of weeks of junk running through our home…..I am declaring that WE ARE DONE…..

It seemed that something was wrong with someone every day…….colds, coughs, teeth….food poisoning……and so on…..
I have been to the pediatrician with two separate children 3 times in the past two weeks…..
Somehow…..
(answered prayer)
Parklen has remained strong in the midst…..
While his mom felt crummy,
his brother coughed away….
his dad was knocked down by salmon jerky (seriously do NOT eat salmon jerky )
his sister cried relentlessly with days worth

he always has food on his face…..somewhere….always

of fevers….

There he sat….
strong.
There he sat…
somewhat at a distance….
Watching.
and praying….
for his family.
He sat strong….
and insisted that he would Take care of me.
He would pray for his dad…
He felt bad for his baby sister.
He should make a present to cheer up his brother….
What a guy.
What a God to keep him strong….in the midst.
Parklen has an obsession with newspapers….
he LOVES to  “read” them….
he will spend hours flipping through the pages…..admiring pictures, asking to read certain articles….circling things he wants in the ad pages….
I was thinking,
what a peculiar thing for a little boy to enjoy so much….
but then I realized…..it is just another window into a world that he lives apart from….
also….
it is kind of adorable to watch him hold the paper like a little old man,
with his new head full of fluffy curls….
This boy is having a birthday next week….
so many emotions fill my mind when I think about that…..
so many happy,
overwhelming….
various crazy feelings….
Some big things are happening for our little super man this weekend….
I cannot WAIT to share!
Sidenote….Paysen started baseball today!!!
First year…
So Excited!!!!
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