Thursday, December 20, 2012

Its a WHAT?!?!?!?

Today was that day that has been anticipated in our family for the past few months!!!  We knew that our baby was looking healthy, we knew that things were going good..........but now, we know our baby is a GIRL!!

This news is weird.  So weird.  It feels like a dream to me.  For as long as I can remember I have wanted a daughter.......Being the oldest of four girls I had a lot of experience with baby girls.......and I always wanted one of my own.  

Fast forward a decade or so, and I find myself the mother of two boys.  Boys are Boys.  They are crazy, wild, loud, destructive.........they are boys, and I know how to handle and mother boys.

As the doctor confirmed that it was indeed a little {she} swimming about in my belly, I almost could not believe it! What am I going to do with one of those?  I am a little nervous.  But mostly SO SO SO SO SO SO excited!!! 

We have had a battle going between the boys the last couple months......Paysen wanting a boy, Parklen, a sister!  The news was accepted pretty well by both parties.....Paysen claiming, "I guess it will be ok." 

So now, the Henderson's will welcome their first little princess........let the tutu, bow, flowers, pink, purple, sparkle shopping begin....................

Monday, December 17, 2012

catch up

I have begun to write this post over and over for more than six weeks now.....always deciding to delete what I have written. Finding that much of what I had to say sounded far too much like an invitation to my very own pity party.. So many things have happened over the past 6 weeks......too much to recount. 

Life seems to go by more quickly than I can even comprehend and no matter how I may try....I just cannot seem to slow it down. 

The end of November marks many things for our family…I turned another year older, we celebrated thanksgiving. but the thing that stands out most to me is how the end of last month marks exactly four years since we first carried our baby through the doors of a hospital.

Parklen is having treatments every four weeks for a while in Denver.....which means lots of trips for me.  His health is not something that I feel like I can talk about lately.  When I start to speak of things that doctors have said, or tests have shown....I find myself upset and worried about the future.  I find myself unable to control my fear, unable to control my tears and unable to remain calm..   My solution to this has been silence.  I have quick answers for when people ask how he is doing, ways to avoid too many details........

This pregnancy has me trying to control my emotions.  Working towards low stress levels for the health of the baby........not something that comes easy. 


We took a ride to see some of our friends after this last Denver trip, it was a weekend that I wished could have lasted much longer. 


We attended the Christmas Parade in their tiny town, something the boys loved.  The rest of the time, we did a lot of nothing.......perfection. 

Don't judge this picture too hard......Little Paysen took this snap of his parents....not too shabby eh?!?!

After the terrible tragedy that happened last week, I am struggling with a new set of anxieties.  If I am being honest, I will admit that I have thought about what it would be like to lose a child, I have been faced with this possibility in my life, but I have never worried about taking my son to school and something terrible happening there.  I spent the weekend in my pajamas, with my boys, being lazy and squeezing them a lot.  There were a couple of times when they asked me why I was hugging them so much........I just said, "Why not?" 

Paysen has no idea about what happened in that school across the country.  He is faced with so much worry.  He worries about being away from his parents, he worries about his mom traveling to Denver, he worries about losing his brother.  I do not want him to worry about going to school.  He doesn't need to . 

For today I concentrate on the good things.....The joy in my life.  My children, my husband and the privilege to trust God every day.  Trust him with things I do not understand....trust him with knowledge that he holds the future....Trust that, in the face of tragedy, he remains.  That although terrible things happen in this world, this world in not the end...........

Saturday, November 3, 2012

looking up

Here, once again......Parklen and I find ourselves in the hospital....Yesterday sucked....for lack of a better word.......If it could go wrong, it did.  Parklen was miserable and it felt like the day lasted for an eternity.  A procedure showed that Parklen's lungs are worse than they had even thought. 

Today they started some "vest" treatments.  Parklen is strapped into a little vest, it fills with air and then it "wiggles" kind of hard, thus shaking loose all of the stuff stuck in his lungs.  The first treatment did not go over well.  He freaked out the entire time (add in some high dose steroids and it was HORRIBLE)  Cool news is, he has to do them four times a day....even when we go home.  They will be combining this with some other treatments. 

They still have some concerns with Parklen's blood tests, and have sent a bunch of them out to other hospitals....still waiting to hear on those.  His main doc says it the best....."he looks bad"  and he does....... 

Last night during a blood draw, Parklen's port stopped drawing.....they couldn't get any blood out.  Kind of a big deal.  So started the rush to fix it, they were preparing to try a number of different things....and after the day Parklen had had, I was dreading this little stressor, which was bound to send him into a roid raged fit.  The nurse left the room to grab some supplies.....Parklen and I prayed......the nurse came back moments later.  As she hooked up a flush to his port, she decided to try again for the blood....there it was, in its dark red goodness....just like that.  We were so excited and I said, "It worked because we prayed."  and she said, "that's exactly what I did when i left the room."  God is good. 

I am missing home, I hate being away from the other half of my family......I miss good food and my bed.  It turns out, being a pregnant mama in the hospital with your baby is super hard.  Who knew?  As I was sitting in the waiting room during Parklen's procedure yesterday I realized something.  In four years of countless procedures and surgeries....I have sat alone during them all except for two.  It is a place I have come to find comfort in while Im here.....being alone.  Time to reflect.....relax.  Not talking to anyone....not trying to explain things.  Just sitting.  Alone, with my thoughts.


So, even though Parklen's illness seems to be progressing, the treatments and future are uncertain, and things really aren't looking up.......I will continue to.  Look up towards heaven and trust God, even when its hard to do.........it is the only certain thing I know.  God never fails. 

Tuesday, October 30, 2012

Triangle......

I find myself treading water in the middle of my mother shape......my shape is a triangle. It has three sides.

On one side sits Parklen, Parklen and his illness.....  His needs, he needs me for his care, for his comfort, for his everything.  I am constantly tending to his changing needs.  Constantly trying to anticipate whats next and stay a step ahead. 

Always trying to protect him from picking up more sickness.  Having to keep him home from the things he wants to do because he isn't well.  Because other kids have germs that could bring him down.

 The past two weeks he has been very ill.  I find myself staying up at night, running to his aide.....controlling his fever, remembering his meds round the clock, holding his hand as he looks me in the eyes and says, "Mama, I hurt inside."  His side is very heavy......

On another side I find Paysen.  My healthy, beautiful boy.  His needs are so different.  He doesn't need me because he is sick, he needs me because he is not.  I am swimming in his pool of self doubt.  He struggles to find his importance in a family that is so focused on his brother's illness.  He is trying to get our attention at every turn.....not being able to understand his home situation.  He has fears about his brother, fears of losing him.....fears that he will never be well. 

He cried like crazy when Parklen had to miss his school carnival.....he wanted him to go, said it wasn't fair.....and its not.  Its looking like Parklen and I may miss out on Trick or Treating....He has to go to Denver......Paysen is crushed.  He cried last night as he begged me not to go.

I have this guilt, that cannot be taken away.  I miss out on far too much with my Paysen. I miss out on his things while I am taking care of his brother.  There is no way to down play this.  No matter how many loving friends and family are there for him, the fact still stands......I am not. I should be there for him in every way, I SHOULD be.  I shouldn't have to choose.......but I do.

The final side of my triangle.......our beautiful unborn child.  The occupant living inside of me.  As I live in a pile of stress.....I have to focus on ATTEMPTING to keep my cool.  Not allowing my circumstances to affect the health of the baby.  Trying to live moment by moment and not think about what is to come......how life will be.  Worrying enough about myself to stay healthy.  And its hard.

We all have shapes....things that pull us in different directions.  Multiple kids with multiple personalities......I know I am not unique in this.  I just ask you, please.....hug your children,  Praise God if they are healthy......thank him every. single. day. if you do not have an illness in your family.  Count your blessings...... 

Thursday, October 25, 2012

THAT kid.....





Have you ever wondered what it would be like to be the kid that barfs at school?  Ya know.....the kid who, in front of the entire class, loses the contents of their stomach.......  Well, after today, Paysen could let ya know what that's like.  He accomplished being the "barf kid" by puking not once BUT twice on the floor of his kindergarten class. 

It has been a week for the Henderson's.....  Parklen picked up an infection and a collection of fluid in his lungs...We had a mishap at the hospital, lots of sleeplessness, and lots of being sick.  God has given Mama a break from her own sickness in order to take care of her babies....which is a huge blessing.

The events leading up to Paysens little mishap at school today are a story all themselves....but for another day.  His white little face peering up at me from the nurses bed was something that I am not used to seeing....the kid just doesn't get sick.  I guess there is a family balance in that fact.  Give him a couple hours on the couch and he got his color and energy back. 

We still dont know where Parklen's lungs will lead us but for now, he is ok.

So, at the end of this day, I am thankful for the past three days without vomiting....thankful for the baby bump that has popped in those three days, thankful for short lived sick days with Paysen, thankful for a husband I can lean on and count on for my need for strawberry Gatorade.....and thankful for the lemon cake resting peacefully in my belly.....

Friday, October 19, 2012

The Dump

So Its been a long long time since I have been here......
There has been so many complex layers of stuff going on it has been just crazy.....
and so now, here I am......to let it all out and dump it on this page.

Where do I even begin........
How about we start with the MOST of the giant elephants in this room......

So, we are having a baby, Yes, I have spilled that news.
We are having our THIRD baby.....
Yep, this is the third go 'round for me and pregnancy.
However, this is the first time, IN MY LIFE, I have felt this sick.
I have lost tons and tons of weight,
my motivation,
pretty much.....my norm.

I have been getting up, taking the boys to school and going back to bed.....remaining in my pajamas...(if you know me well, you know how big of a deal this is.)
Been sporting the no make up look, most every day.

Please let me just come to my own defense for a second....I am not a wuss.....I have babies drug free, I can handle pain, I can handle stress.....but I have not been able to handle this sickness.....

Yesterday and today I have felt human....I'm hoping that is a remaining trend...



Parklen and I returned from a Denver trip today, spent the day yesterday in the hospital at a check up.
More news that is the same.....as every. other. time.
His lungs are not doing good.....and getting worse.
The rest of his body, seems to be responding to treatment.....just not his lungs.
And so, like every other time, we wait.
We wait to hear a new plan,
We wait to see if that plan will work.....
And if there is something that we are used to doing......
It is waiting.....


Another huge issue, is Maryland.
Nothing is going as it should be in preparation for the trip.
The research hospital lost all of its information on Parklen a few months ago, which shoved us back to the beginning of the process.......
After that we were informed that the Dr. that would be seeing Parklen had no knowledge of his existence.....even though he had been speaking to his doctors over a period of time.
That hurdle was followed up by a huge blood test mishap, resulting in a "re-do" of his huge blood tests. 
Yesterday, I was informed that it takes at least two months to receive the results from those tests.......
and so we wait......
I am no longer convinced that this hospital is the right place for Parklen.....but it is out of my hands.  I will pray and let God lead the way.

The last thing weighing on my mind, this precious blessing I carry along.
There is so much unknown......so much.
I am so afraid,
Afraid that I wont measure up.....
afraid that I wont be able to handle this new mother task.

When the doctor looked at me yesterday and said, "When the baby is six months old, we will have to do the tests."  I couldn't hold in the tears.  The very thought of carrying another baby, the same age as Parklen was, into the doors of that hospital is too much.  Too much........and so, there I  sat, in the exam room with my brave four year old....and he watched his mama cry. 

I had no choice today.....I had to do what any girl would do....I chopped off my hair.  and just like that......I felt a little bit lighter.......

So now I have dumped my woes and worries.....well most of them anyway......and it feels a little bit better.  Thanks for always reading, and always supporting.

Sunday, September 23, 2012

Six

Yesterday there was a birthday in the Henderson house.....Paysen, our sensitive, loving, smart, compassionate, witty, and wonderful boy turned 6!  Surprisingly I didn't shed any birthday tears like normal.....I found myself too busy trying to just make it through his day whilst feeling super sick. 
We do a lot of candles for our birthdays!!  We start at breakfast......a request for his favorite, white chocolate pancakes adorned with some fire sticks is a good way to start your special day. 

He got to choose his dinner location......Olive Garden was his desire.....and so we went!!  It was so cute and funny to watch his face as the staff sang happy birthday!  Another candle.....

We ended the night with cake......I am not able to bake right now (this pregnancy is KICKING my butt) so instead of purchasing a cake, a friend of mine offered to bake him his homemade strawberry request.......more candles.


We celebrated his birthday with friends a couple of weeks ago, I have picked up this tradition of early celebration in order to celebrate outside....and always afraid that the Wyoming weather will ruin a date closer to his actual birthday. 

It was a circus themed party......full of fun and games!!!  One of the most fun parties to plan!  I started with the planning about eight months ago. 


There were carnival games.....in which the kids earned tickets for playing......at the end of the games they were able to "purchase" prizes from the prize table with their earned tickets.

There was a treat table filled with cotton candy, popcorn, circus peanuts, cake, cupcakes, and punch.....



The kids were also able to get circus tattoos, and make a stop at the "Kissing booth" in which they had a chance to guess the amount of Hershey Kisses in a Jar....the winner taking it home!!!!

It was a lot of fun, I failed to capture a lot of good pictures that day and have suffered from nightmares at my missed opportunity, but there are a few! And the memories will live forever. 

Friday, September 7, 2012

On Surprises........

Let me tell you a little story....Its a crazy one.

I can recall at least a dozen different people that asked me this question in the past 4 months, "Are you guys going to have any more kids?"  Each and every time I would answer, "I'm not sure, but defiantly not right now, things are just too crazy."  I believed this to be true.

A little over a month ago I started having little feelings, feelings that I ignored.  About three weeks ago I found myself unable to drink ANY coffee.....none.....at ALL (if you really know me, you know that this is a big deal....I live for coffee)    That's when I knew.  Nothing on this entire earth could keep me away from my coffee.....well except for one thing.....

I took a few tests at home, You could barely see the result and Devan insisted it wasn't there.....After a blood test, our thoughts were confirmed. 

We are having a baby......a BABY.  Another child, ONE more human in our home......a baby.  You may be able to imagine the panic that set in......  Nervous, scared and uneasy feelings......how?  How could we do this?  How could we do this NOW? 

Then that still small voice whispered.....this is a blessing.    We are blessed. 

I am still laughing at myself....thinking I could plan out my entire life.....I can't.  I know this. 


It is very customary to wait a while to announce this type of news....however, after discussing with Devan and reflecting on the stressful situations going on about in our life, we decided that the only practical thing to do was announce....ask to be lifted up in prayer.......We need the prayer. 

The boys are crazy excited!!  They have, after all, been asking for a baby sister for a few years now.  Going to be a change for Parklen, no longer being the baby....I'm reminded of this when I see this picture.....looking back at us like "really?"

So.....Surprises can be scary.....but mostly, surprises are good for smiles, and joy.  We were surprised and we are thankful!   Please pray for us!  For Parklen and our upcoming travels....for our family, for Paysen in kindergarten and for this pregnancy, this blessing!

Friday, August 10, 2012

This is my story,..,

This week has been an emotional and crazy ride.  I am not alone in Denver...Devan and Paysen are along for this trip............having someone to share the drive with is a wonderful gift....it will be especially wonderful when I leave the hospital this afternoon, after arriving at 5:20 am for Parklen's surgery and spending last night waking up every hour in a panic in fear that I had overslept.  This girl is going to be napping it in the car.....(this is a risky move around Devan...he is known to snap pictures of his dear wife snoozing along with open mouth, drool and all....)

Parklen is back in surgery right now.....they are repairing his teeth that have been rotted away from his disease and his constant meds.....after that they will look at his lungs and see how they are looking after three months of treatment. 

I am trying to hold myself together....but its been tough this week.  We took Paysen school shopping and the very thought of having a week and a half left with him full time forms knots in my stomach... Pair that with the stress of treatments, surgery and planning a trip to Maryland and I am just a ball of CRAZY.

Parklen woke up in a great mood....ready for his surgery and heading back with a smile.  He is so brave.......Ive been trying to imagine all of the wonderful things his life will hold.....I'm certain there are big things in store......he is so brave.

After I walked Parklen back to surgery and watched him drift off into sleep.....I ran to the cafeteria to scarf what could be the only food I get for a while.....I then found myself in the restroom, staring at myself in the mirror......I could feel the tears welling up and I began to see them glisten in the harsh fluorescent lights......at that very moment I heard a song in my head.....its one that I have known my entire life.....One first heard in my baptist church growing up...and I am hearing it today.  The words speak to me, and although it is an old hymn its meaning rings true.....These are the verses that stopped my tears......

      "Angels, descending, bring from above
           Echoes of mercy, whispers of love. 
         This is my story, this is my song
             Praising my Savior all the day long;
              Perfect submission, all is at rest,
               I in my Savior am happy and blest,
                  Watching and waiting, looking above,
                Filled with His goodness, lost in His love."


I will be the first to admit....I have a crazy story.  Honestly, I cannot believe some of the things that have happened in my life.  But............If feels amazing to know how my story ends.....I already know the score to my life game,  I win.  I know that no matter what each day holds, I will be spending eternity with my loving Savior.  I know that God is using my today to his glory....I know that my son.....who has endured so much pain and trouble for his age....is an amazing testament to my faith and God's goodness......... 

I am thankful for my story....I am thankful for the moments that prove God's love for me.  The moments when devastation is taking over my heart and mind.....and with a simple prayer, I have peace.....Peace that surpasses ALL understanding....  I don't understand any of this stuff......but thankfully I don't have to............I just have to trust, and I do.

Thank you for praying for our family...........every single one is needed, heard and appreciated. 



Friday, July 27, 2012

Tennis!


Well hello there......Been awhile eh?  Life has been keeping me busy, as it tends to do.  Some pretty exciting things happening for little Parklen that I would like to share......

  A group of wonderful people are putting on a charity tennis tournament for the little dude!!! Awesome right?  Yes!!! 

What's that you say? You don't know how to play tennis?  Well, me neither....really.  Unless, of course, you count Devan and I trying to hit each other with the balls in what we like to call, "Combat Tennis."  Fun stuff there. 

There is going to be a beginners bracket...which we will play in and I hope, if you can, you will join us.  You can find the information about the festivities here. Annnnd, even if you decide not to play, there will be a lot of fun stuff going on!! 

We are really excited about all of the support and help!! It is easing the "Going to Maryland" stress quite a bit! 

What have all of you been doing?  Hello.........Summer is almost over.  That is CRAZY.  I can actually feel a panic attack coming on.....Holy Kindergarten!?!?!?!  Just around the corner. 

Thursday, July 12, 2012

One day at a time.....


This is how Parklen rolled around the floor today.....riding along on his IV pole.



Yesterday when we came to the hospital, and they accessed Parklen's port......he didn't want me to hold him......because, "he's not a baby."  So I didn't.....  I could see him smiling behind his mask.... He did it, he isn't a baby. 

I have dreaded this trip since our last one.  My spirits aren't high.  Three years and eight months of hospital's are getting to me.  Its something that I am used to, but I wish every day that I wasn't.

This month the plan is different than it was last.  Its hard to try and explain to everyone who asks........

They are changing his daily meds to a much stronger drug....one they have tried before but not this high of a dose......hoping that he will respond better to it.  They are considering another round of scopes and tests next month.  And I have been reminded once again, to "think about the transplant."

His main doctor.....has decided after a couple weeks of thinking, that we should go to Maryland.  The specialist there at the research hospital doesn't have any great ideas.....but he wants to see him so that when they discuss him long distance he will have a better idea of what he is like. 
Can I tell you that a million anxieties arise in my gut when I think about making a trip across the country.......a MILLION.    But, as Devan reminds me, we will take it one day at a time.


Monday, July 9, 2012

Where I stand.......


Here's where I stand.......
I stand afraid,
of the future.....
afraid of the now.
I stand hurt,
I stand weak......
I stand confused and puzzled.

I stand in the face of perfect strangers......
Ones that send me thoughts and prayers and words of my strength,.,,,,
I stand wanting to scream at the top of my lungs....
"I am not strong..." 
For, if for one single moment, I forget about God, take my eyes off of him.....
I am crumbled on the floor,
a weak and hopeless woman.

I do what I must,
and truthfully, some days I don't know how.
I struggle,
I tire.

I know for certain........
I could not maintain.........
with no faith.

and I fail to understand how anyone could..........

I am thankful to God,
that on days like this....
Days before I head to the hospital....
and I feel overwhelmed,
and angry.....
He loves me.

I am thankful that when its hard to see the sunlight......
I can look to my past and remember the good that has been brought to me through my heartache....

I am thankful that when I feel so lonely.....
I am never truly alone.

So....where do I stand?
today.....I don't....
I sit......
I sit and stare at my suitcase......
dreading the monthly pack......
feeling sorry for myself, my baby, and my family.

TOMORROW......
I will pull myself up,
but for today......
I am content where I sit.......

Friday, July 6, 2012

whats up....

I feel like I have been really absent from my blog lately.  Not on purpose.....really, or maybe it is.  Life has been more of the same lately.  Sometimes I feel like I have nothing new to write about.  Its just things...repeating themselves...over and over. 

So, I think that maybe people don't want to read my same thoughts....about my troubles....Then someone asks me, "why haven't you been blogging?" So I will.

We are heading down to Denver this coming week.  Me and the boys.  Parklen is getting three more days of treatments and we will talk about what they have come up with as far as the future goes. 

Thanks to his awesome medicine,,(have I mentioned my hatred for Prednisone?) Parklen isn't sleeping well.....at all.  Some nights its just restlessness, some....he is completely, crazy wide awake....Sometimes he wakes me up screaming..... its different each night.... but one thing remains the same, he and I are not sleeping. 

The no sleep thing really sets the tone for our days...I am so slow in the morning...slow to rise and slow to really wake up. I feel like I am dragging for at least a couple of hours after getting out of bed, and the kids notice....well not Parklen, he sleeps in.   I am so concerned for this coming school year.....praying Paysen wont be the "late kid." 

I used to be the wife that got up and made her hubby breakfast almost every day.....I haven't seen that lady in a while.  Honestly, a couple hours before he leaves for school is the time I really start sleeping and I don't even hear him go most mornings.  I tried compensating by making a huge batch of breakfast burritos and freezing them for him....which reminds me, he ate them all..like a week ago.....

This brings me to another huge thing going on right now....Devan is in graduate school.  Have you ever been married to someone in graduate school?  Its something....that's for sure.  He spends most of his time at school....I really mean "most."  If he isn't at school he is tucked away in the room, hunched over his desk.....The boys and I have been missing him like crazy.  When I look down the three and a half year road we have till the end....I feel overwhelmed.  When I focus on today instead, I am beaming with pride.  I am so proud of him, for the courage it took to start over, for the dedication he shows each and every day.....For stepping out of his comfort zone....for working hard for our future.  We have decided this is the path for our family,.....so we do what we must to make it work.  We miss each other....but make the most of the time we are together.  I try to help him study...but really, I know nothing about anatomy.....I am good at reading flash cards though..(not really, those are some hard words to pronounce....haha.)  This first semester is just the beginning of many....God willing, we will get through this.

The school thing is hard on Paysen....he really misses his dad.  He's good though, as long as he gets his wrestling time in.,.......



We had a good little break from reality on the fourth....a few hours of relaxation....with some friends.
Tucked away in our favorite hidden spot on the mountain....not doing much.  and it was what we needed. Sometimes.....a group of silly, carefree people is just what the doctor ordered.



Lets leave this little post at that......stay away from the really mushy, feeling type stuff.....for tonight

Saturday, June 30, 2012

OH Snap..... :)

Thought I would share a few photos from a few recent sessions.......For those of you not on Facebook...



This little gal is a heart melter......the daughter of one of my oldest and dearest friends.  We grew up together and our families have been friends since birth.  I've always had a feeling that she would be the best Mama....I was right........and seriously, How cute is this BABY!?!?!


Talk about some love....this is one of my all time favorite fams.....True friends....We have been in love with this family since the word GO.  I was blessed to capture some of their spirit in their photos. 



Another Gal Pal......and her Sweety... This was a fun night with these two crazy love birds....Lots of laughs!  I taught this young lady years ago at Cosmetology School.  She is such a wonderful person, one of the best I know.....thrilling to do these photos for her.  I should probably also mention that both of my boys are convinced that she is their girlfriend....I havent had the heart to share these photos with them.....


As you can see, I have been keeping myself kinda busy as of late.  My Boys are not used to Mommy having anything of her own to worry about....to say they are NOT adjusting well would be an understatment.....we will ease into this, but for now....I am up late.  Nothing new....  Parklen has been keeping me company, when his meds keep him up, he has set up camp at my feet........Playing games or asking questions, for hours.

This little Venture I am on is such a blessing...I am loving every minute. I am thankful for every minute!!!!

Lots of other stuff going on.....I promise another post, soon.


Friday, June 22, 2012

hope.



Wow, that was quite a break I took from blogging.  I have to be honest....I have been really busy, REALLY.  I have been spending most of my time doing shoots, editing shoots, scheduling shoots and editing shoots.  I am not complaing a bit.  This is like a dream come true for me.  If I have had any extra time, I have tried to fill it with something, all to avoid thinking about the things that I do not want to think about. 






After our last Denver trip we stopped for a weekend of camping.  What a wonderful time for our family.  There was toad hunting, frog catching, fishing, running, playing, singing, swimming and fun.  It was what my heart needed right then. 

I have spent a couple weeks only talking with Denver twice.  I have spent a couple weeks trying to maintain a sense of calm.  I have been floating on a cloud of avoidance.....trying my hardest to feel "normal."   

Tonight, as I sat at my kitchen table....it all unraveled.  A simple email....99 words long.....had the power to bring me back down.  Down to the place of fear....the place where my thoughts usually reside.  A place that forms lumps in my throat and knots in my gut.  I hate this place.

The summary of the email is this....
                              Hi Amanda, We have been speaking with the research hospital, they dont believe that they need to see Parklen, and all the sugestions that they have are to keep doing what were doing....possibly try a different daily drug.  THE END.

There isnt a stitch of hope offered in the email that I keep reading over and over and over again....hopeing that maybe I will find some encouragement that I am missing.  Its not there.

How do I do this?  How do I contiue to give my child medicine every single day, to drive 5 hours to treatments...that, at some point may or may not help him.  How do I contiue to wedge a huge block of discontent between me and Paysen, causing his anger to grow each time I take his brother to the hospital. How? 

My heart hurts....for many reasons this week.  Right now, I am searching the very deepest part of myself....looking for the glimmer of hope that I know resides within me....somewhere.  I know that God will bring the hope....as I pray, It. will. come.  Wating for hope is sometimes the hardest. 

I know that the plan for my llife and Parklen's life and Paysen's life and Devan's is not a waste.  I know that somehow God is working in this situation and every other that we face.  Knowing that, keeps me looking for the hope, forces me to refuse to give up or give in. 

My hometown lost two very young people this week.  When young people go, it makes you think.  Your last day, could be any day.  I will remember this....today and every other day that I am blessed to breathe. 

Prayers go out to people hurting, Prayers for Peace. 

Friday, June 8, 2012

Canceled plans.....



Almost every day, there is an occurrence of concern with Parklen's cough.  In public, people stare at me as though I am the worst mother for bringing my clearly "sick" child out.....In the hospital, we get moved rooms a lot, because the mothers around us don't want their children catching whatever it is that Parklen has.  I want to scream at the top of my lungs.......I want a t-shirt that says.."My child's cough is NOT contagious...it is caused by his diseased lungs....diseased with something that you CANNOT catch"  and then I would probably add in, "My child is also on high dose steroids, so quit staring as he has an emotional break down."

It is such a relief to me that Parklen doesnt notice the stares, or the concern about his cough....He doesnt realize that people dont want to be around him.....he just keeps on going, as if moving rooms again and again.... is such an adventure.  Im not so sure how I will deal with these situations when Parklen realizes what people around him are thinking.....maybe move to a deserted island.....

Parklen's oral surgery has been canceled for this afternoon.  His lungs are too concerning to put him under today.....it would defiantly result in an extended stay.  There isn't enough urgent concern about his teeth to risk it now. 

This Kid wants to be a doctor helping kids in Africa when he grows up.......The story leading up to this decision should really be a post in itself......so, maybe soon.  He was very interested in watching them access Parklen's port the other day.....a procedure that requires everyone around to wear a mask...

We are in the infusion clinic right now, the last treatment for the month, pumping in through his port.  He is cranky and feeling lousy.....and me, I feel the same.

We will leave Denver this afternoon and head towards our favorite lake.  The cancellation of Parklen's surgery is a hidden blessing for us....The boys don't know it yet, but we are going to have a family camp out, and I will tell you one thing for sure......some time away from every ONE and every THING....time with my love and my babies, on the lake...under the sun, with a pole in hand....is JUST what I need.

Remembering to be thankful for this hospital, for these doctors.....even when I am feeling frustrated.
Being thankful for canceled plans, and looking foward to a sun tan and some fish in my belly.




Thursday, June 7, 2012

of courage.......

This is my sister......
This week, she is my life saver.
She is tagging along on this Denver trip....
and by tagging along, I mean playing with, watching over and keeping my Paysen busy.
She is rocking my socks.....


There is a program at Children's Hospital called "Beads of Courage"  It is a special program for children with cancer or blood disorders.......You receive a bead for each and every thing you have done for your treatment.  A collection of your courage to look at and admire.
For whatever reason, Parklen had never received any beads.....I'm thinking because it took so long to get a diagnosis.....and by the time we had that, the beads were just forgotten.
Today, they gave Parklen his beads.


It took three necklaces to hold the beads, and it took me over an hour to string them.  These are Parklen's beads....... Every single one stands for a procedure or hardship that Parklen has endured over the course of the past 3 and a half years.....Let me say that again, EVERY single one of these beads represents something that Parklen went through.  I haven't counted the beads......because, well....I don't want to.  The nurse confessed, that there were probably a lot forgotten.


 Parklen had fun today...making friends with a volunteer that played with him for hours.  He never seemed to notice my sadness....as I strung each and every bead, reflecting upon the last few years....
 This is Parklen's main doctor.....here, he is singing "happy birthday" to my little man, while he licks frosting from the wheels of his new tractor.  His team threw him a little party since they missed his birthday last month...
After treatments, we took a walk.  I needed some fresh air.  I haven't gotten the answers I am looking for.  There are none to be found.....  Parklen's  Denver team is speaking with doctors from the research clinic, California and Chicago. There were tears shed today as we spoke.....and they were not all mine.  I was given a promise....."I will not give up."  and, for now.....that has to be enough. 

Friday, June 1, 2012

Doors


This is how I found my five year old yesterday......sitting in the yard, in front of a self made fire pit....holding a magnifying glass.....trying to start a FIRE....  Can you say, Trouble??  Trouble for sure....but really, I have to be a little proud of how smart he is....I mean COME ON, he made that pit all by himself. 

The last week or so have been super busy.....filled with craziness. I have had a million ups and downs.   Many doors have been opening for me lately....Doors that lead to a personal passion of mine.  After much prayer and encouragement from my family and friends.....I have been taking steps towards pursuing photography.  Starting small....have had a lot of wonderful people volunteer to help me practice.  And, thanks to one of the most amazing women I know, I have already gotten to experience what its like to photograph a wedding. 

I have often dreamt of following this path, but over the past few years....I have stuffed any personal dreams down.  Knowing that my time is limited, I am needed by one particular person almost every moment and by a couple other quite often as well.  I have felt that "someday" God would open doors for me.  I have known that he has a plan for my life......I have just been letting him guide and direct....and He has led me here. 

Kind of exciting.....and a little bit scary. 

 We are heading down to Denver in a few days.....Parklen will get some treatments, and an oral surgery to repair almost all the teeth in his mouth.  The treatments don't excite me.  I am going to have a serious talk with the main Doc while we are in the hospital.  I don't want to continue the treatments if they aren't working.....which, we know they aren't.  There has been talk about going down more frequently...(as if once a month isn't frequent enough) Maybe every couple of weeks.....I don't know.  But what I do know is this.....There are long term side effects I am not interested in my baby experiencing if he is not benefiting from the medicine. 

Been praying a lot about my attitude in dealing with the upcoming week.  As with every other month...I have the normal knot in my stomach.  Knowing that things will turn out ok.....but hoping that they turn out even better than that. 

Thankful for the opportunities that are coming my way....thankful for a family to love....thankful for the summertime, and thankful for little boys who dream of making fire. 

In my ideal world.....I would do this.....write, write and photograph...... This is what I have been thinking for years...... and then it occurred to me......that is exactly what you have been doing.
And so I will................

Monday, May 28, 2012

away

No cell service,

No Internet,

No worries......

This is how the boys and I spent our holiday.

In a cabin,

In the woods,

Atop the mountain......

The smell of a wood burning stove and fresh mountain air, clearing all worry from our minds.

Sometimes, a cool breeze and a bunch of trees........

is just what you need. 


Wednesday, May 23, 2012

Feeling the weight.......

My shoulders have felt heavy. 

I feel like I am gasping for air.

When it comes to Parklen..........I feel overwhelmed. 

Denver has been back and forth with me, still with no certain plan.

A couple of years ago, I was given a meeting with the BMT (Bone marrow transplant) team.  It was one of the hardest things I have done to date.  I was told that often, as a last resort, children with ALPS are given a transplant, It takes months of living in Denver for Preperation and months after the transplant for recovery.....I was also told that with a child like Parklen, survival rates were only 60%  meaning that 40% don't survive.  After the meeting, I did my best to push all of this to the very back corner of my mind.  Since then, I have thought about that meeting only a few times, each time feeling sick and forcing myself to forget again.

When I spoke to Denver on Monday, the Dr. said to me, "We are not quite convinced that its the right time for a transplant."  I was in shock.  Never in a million years did I think we were even close to this point.  NEVER.  I could not believe that this was even in the minds of his team.  I knew that he was worse, but I suppose I didn't think he was this bad.  I was sitting on the phone, thinking about all of his doctors sitting in a room, weighing the options.....my mouth hanging open and tears filling my eyes.

I told the doc, to go ahead and stop thinking of the transplant at all.  Its not happening....not now, and hopefully not ever.   They agree that right now, isnt the right time.....however, it was brought up....It was considered. 

We have to travel down for Parklen's oral surgery in a couple weeks, I am having a meeting with his main doc then......Its so hard that there isn't a plan.  No one knows what to do for sure. 

I haven't been sleeping, instead laying awake thinking, or jolting awake from a bad dream.  I just hate the unknown.  I hate it.  I hate that I am the person in charge of Parklen's medical decisions.  I hate that.....in some way, I hold his future.  I hate that I cant see that future. 

There is a research hospital in Maryland.  They do studies on ALPS, I have been working up the pros and cons of taking Parklen there.....the cons, much more present than the pros.  They aren't offering any different treatments than Denver at the moment......I don't know what the right move is. 

Many of you have been more encouraging to me than you will ever know, the response from this blog is overwhelming....I thank you, and I ask that you would continue to pray. Pray for Parklen, for our family and please pray for me. 

Saturday, May 19, 2012

Graduation......

The past two weeks have been a blur.....There has been so much going on and so quickly.

It feels like it was only yesterday....I took my two year old Paysen to his first day of preschool.  That entire year, every Tuesday and Thursday the teacher's would have to pry a screaming Paysen from my leg.  He never wanted to be away from me......By the time I would pick him up a couple hours later, he was done crying....But it was the same every time.   Now, he is five. 

He graduated from Pre-school thursday.  He is growing so fast. So fast.  He is ready for Kindergarten.  I am not ready for him to go. I want to hold him here, where I am his most favorite person, where his hugs and kisses come freely.....where we are.  I know that helping him grow up is my job, I just cannot believe how quickly it goes by.

This is how he sees himself....pretty cute!


I am so proud of this little dude. He is so smart, so sweet and so much my baby.  I am proud that he declared, in front of everyone at graduation, that the things he is most thankful for are, "The world and Jesus." 

Here he goes.....Past pre-school, and into his summer before Kindergarten. I cannot believe it!