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................