Jul 092014
 

**EDITORS NOTE: This post was written in the forest.  I was sitting on a log surrounded but trees and started to write a poem.  That didn’t happen but I ended up writing the following post.  In longhand.  With a pen.  In a leather journal.  Holy crap I am old school once in a while.  🙂  Let me know what you think.**

***second editor note, this post was written a year ago.  I thought I should get it out, seeing as how we are going back this year and I will have another one to write.***

I sit alone in the woods, listening for the sounds of the forest.  Trying to ignore the cars driving past only a football field away.  I try to quiet my mind and not hear the voices, other people with their own worldly problems, trying to bring children to heel. I am surrounded by trees, close to our dwelling but hidden from all but the most searching of eyes.  The sun is greatly filtered through the trees and the patch of sky above me shows not the barest hint of clouds.  This should be a good spot. The ground on which I sit is comfortable enough, good forest loam and a few small rocks.    It should be a place to sit in quiet reflection but again a car passes and voices shout.  I am not alone.  No animals will be visiting.  I know that there are places out there where I can find that peace and solitude that I have found before on backpacking trips.  It is still there somewhere. I have been searching my copy of Walden looking for nuggets.  Not my favorite book, but I love the gist of it, going out and just being in the world.  I have always wanted to go and have a place in the woods, far from “civilization”, where our food is provided by hunting or fishing or from the garden near the house.

I can’t help but think this every time I go into the woods (and then a plane flies over), “I went to the woods because I wished to learn what it had to teach.”  Of course this is Thoreau paraphrased.  I should learn the actual words as they suit me- “I went to the woods becasue I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived.”800px-Thoreaus_quote_near_his_cabin_site,_Walden_Pond

Yes I am alive today. There are so many times lately that I have not been sure if I am living or merely existing, taking up space in the world. It is quiet now.  Birds are beginning to have conversations in the trees until they are silenced by far off shouts and another car passing by.  In spite of it all, I am grateful for times like this.  Alone, no kids, no wife, no phone, no internet.  As much as I love all of those, when worse comes to worse and the world goes to hell I know that I can take my family and head to the woods.  Build a house like Thoreau did, and live simply.  A handful of seeds, means to make fire, my rifle, and my knife can provide a long happy life in the woods.

The woods can provide.  Or rather I can provide from the woods. This is an odd sort of camp, due to its nature.  It is here in Utah, up a canyon that is known for its fall colors.  It is on a road that is part of the Alpine Loop, just behind Mt. Timpanogos.  I can see the back of the mountain from here.  This is a family camp for the Utah chapter of the National Kidney Foundation.  Only families who have kidney patients are invited to come here and play together, be normal, and share stories of triumph over kidney disease, dialysis, and transplants, and to give hope to those who are currently going through any part of the disease process.

All of this written while I am now being chittered at by a squirrel.  Anyway, if you are new here, my youngest daughter has Kidney disease.  she was diagnosed just before she turned 1, spent 2 years on dialysis, and finally got a transplant.  It has now been 3 years since that transplant and she is very healthy and happy.  We thank God every day for that blessing of the kidney and her health. Anyway, the family camp has “rustic” cabins with power and heat.  the entire camp meets for meals and socials.  We first came to Kidney Camp in 2007 when we were stilll trying to do peritoneal dialysis.

I remember hauling the bags of dialysate solution up the hill followed by the heavy cycler and the other supplies for Amelia.  I remember that first night, trying to get the dialysis to work, and finally giving up on it for good.  That was just over 4 months into the whole kidney disease thing, after several surgeries, and 3 different peritoneal dialysis catheters. She was finally strong enough that the doctors would let her go out of the valley, so we came to Kidney Kamp.

That will always be memorable, as well as the place where we had to stop trying peritoneal dialysis. The kids were disappointed that we couldn’t go the next year because of Leatha’s baptism, but we went the next year and they loved it again.  This time we didn’t have the dialysis equipment, and Amelia was almost 4 months into her kidney transplant.  She was 3 years old then.  She got her transplant a week before her birthday, there will never, never, be a better birthday present; a new kidney and no more dialysis.

The next year we came to camp again, and the kids couldn’t stop talking about it.  They still talk about this simple weekend every year.  We missed 2011, but are back again in 2012.  We have seen some of our friends that we have met up here, some that we have known on dialysis, some we have been around for their transplants.  Some of these people will be on dialysis for the rest of their lives, some are still waiting for a transplant.  Some are donors, they are welcome as well.  It is really neat to share that gift and reception of life. Last night, there were 2 parents that had donated a kidney to their children.  They all are part off this kidney journey.

There are many different stories here, but we all understand each other on different levels.  Up here though, we are all the same.  The mountain doesn’t care what you have or who you are, the mountain is there.  The trees change like the people but they will always be there in one form or another.  If they only observe the majesty from the huge picture window of the lodge. God has put all of this in place for us, and here in the mountains, everyone can pull out their own meanings.

For me, I am grateful that I have had these trials with Amelia that lets me come to Kidney Kamp and be here with everyone.  As hard as it was spending almost 80 weeks on dialysis through 312 sessions of Hemo (not counting what they did at first in the hospital) I am so grateful that I still have my little girl.  She is still my buddy, and still glad to be with me.  She started school this year, and, while we still have to be careful, she is healthy enough to go to public school. No, she will never be whole like she was when she was born.  She will always have kidney disease.  She will not have her original kidneys, but she has a kidney from a stranger who became a sister.  She will be on medication for the rest of her life, but she can do almost anything she wants.  She will get tired a lot, but she can play and live a life.

I really want her to do as Thoreau said and “Live deep and suck out all of the marrow of life.”  Some of the best ways for her to do that now is to be in the woods, at the foot of these striated cliffs, in the scrub oak and pine.  Here in the woods, learning what they have to teach.

 

** Like I said, this post was from 2012.  We are headed to Kidney Kamp again this week.  I fully expect everything to be the same.  More on that later.**

-Justin

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Jul 092014
 

Well folks last week was a mess.  I don’t really want to get into the journal or this is why I need to be coddled trap, but let’s just say last week was, well, a mess.

My Son was born on July 1st as I have documented on here, and then we spent 4 days in the Newborn Intensive Care Unit.  It would have been 14 for antibiotics if my daughter who had the kidney transplant didn’t decide to get an infection herself.  Anytime a transplant patient gets a fever over 103.5 degrees, they worry.  And then they admit to the hospital.

We were lucky that we could get my son transferred to the childrens hospital to at least be in the same building as my daughter.  I didn’t get much done over the week however.  I finally got my computer up there on Wednesday night and was able to do a bit of work and even record a podcast but good grief I am behind.

I did however come up with some good ideas for posts in the near future.  I even started a new ebook that I am planning on giving away with my email list.  I am excited about it, but I need a new title.  I googled my title and got a couple of older blog posts out there.  I don’t want anyone to feel ripped off.

Well here we are then, another week of blogging and creating and no worries about last week.  I am sorry about Fiction Saturday though, you guys are getting ripped off the last month with that one.  There will be more story this week I promise!

Thanks for reading and sticking around, I will have more pics of the new baby on my pics page, check it out!

-Justin

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May 272014
 

I had somewhat of a horror movie moment the other day.  I took my 4 year old and the baby to the Wal Mart to get the essentials, you know diapers, milk, screws etc.  I am, if you haven’t read about it by now, somewhat of a fishing nut.  I always want to go fishing, even if I don’t get the chance.  So when at Wal Mart, I cant help but walk through the sporting goods section.

It was there that trouble shocked my brain.  Now, Amelia, my 4 year old decided to break her foot last weekend so she had to ride in the cart while Tristan, the baby rode in his car seat in the upper deck of the cart.  Amelia started talking about how she wanted to go fishing with her pink fishing pole and how she was going to catch a big fish with Daddy.  I was so proud.  Up until now we give her a bit of line tied to a butterfly plug that she could thrash around with.

I started thinking, her birthday is in 2 months, she will be 5 and she could go fishing for real….hmmm.  Let’s get her a tackle box and some hooks and we can go to town.  It was at that point she piped up and said how much fun it would be if she could fish with Tristan.  I said OK, and then she said she wanted to teach him how to cast.  All I could think of then was her tossing back a real live hook and catching the baby.  More than once.  My daydream vision had multiple hooks in his body and Amelia tossing him into the lake, car seat and all.

Maybe she isn’t ready for a set of real hooks all to herself.  I think we can wait another year to jump off of that bridge.  I still bought her a pink tackle box and some pink power bait to go in it.  We are still going fishing.

Thoughts?  Questions? Criticism? Misguided attempts at humor?  The comment section is waiting for your fingers to fill it with wisdom.

Have a great weekend.

Justin

PS- any ideas for podcasts let me know!  I want to talk about what you want to talk about!

May 272014
 

Hello folks!  Today I wanted to tell you about an organization that we belong to.  It is called HopeKids.  HopeKids is  non profit charitable organization that is all about helping families of kids with terminal diseases and afflictions do “normal” things.  They primarily were founded with cancer kids in mind and have since broadened out to include all sorts of diseases including, heart disease and Kidney disease.

They recognize that all of these diseases affect the whole family.  They are permanent diseases that can be treated somewhat, but in most cases kids can’t do things that other kids can.  Most of the kids in HopeKids here in Utah are immunocompromised, including my daughter.

Please visit http://www.firstgiving.com/ameliaskidney and sign up to be a sponsor for our team!

If you don’t know, immunocompromised means that they are in treatment for especially cancer, or they take drugs to suppress their immune system so that the cancer cells can be killed or, like my daughter, so she does not reject her kidney transplant.  Most kids in this situation have to be very careful where they go because they can get sick very easily.   Even a simple cold can turn into pneumonia because these kids can’t fight the bugs.

HopeKids gives families a place to go where everyone is special because everyone has some disease.  It becomes very close knit and it is great when you go to a place where people understand what you are going through and all of the kids can be treated normally.

I can’t tell you how many people would turn away or walk away from us in the store when my daughter had a feeding tube in her nose.  Or if they caught sight of her dialysis catheter that was in her upper chest wall.  I saw people look in horror as we would give her medications.  And she did not have many things to show.  There are kids with breathing tubes, as well as feeding tubes, or wheelchairs or crutches.   I have seen people avoid all of these type of kids.

HopeKids doesn’t.  No one cares what these kids are hooked up to or what they have in them to keep them alive.  No one cares that some are bald from chemotherapy or that they have to wear a mask to keep any germs out.  I still make my daughter wear a mask about half of the time, and that is over a year out from her transplant.  No one thinks twice about that at a HopeKids event.

What kids of things do they do?  Movies, arcade visits, plays, we have seen the dress rehearsal of the nutcraker from a pro ballet troupe for the past couple of years.  They do a birthday party each quarter for the kids who have birthdays in that quarter, and each kid gets a personalized present from HopeKids.   We got to go to this event: http://www.deseretnews.com/article/700031968/Hope-Kids-offers-a-modern-fairy-tale-for-children-with-illnesses.html.

All of these events are free to the HopeKid and the family!  Which brings me to another point today.  While HopeKids is always looking for donations, we are participating in their yearly fundraiser.  It is a 5K run/walk or an adventure walk if you prefer.  Here are details from the site itself:


Date: Saturday, September 11th, 2010

Time: Registration starts at 8 AM, Races start at 9 AM

Fundraising Goal: $40,000

Come and join us for the 2010 HopeKids Wasatch Adventure taking place at the beautiful This is the Place Heritage Park in Salt Lake City!

All proceeds to benefit HopeKids Utah.
HopeKids is a non-profit 501(c)(3) charitable organization.

Get a fundraising team of up to five together and choose one of four activities to participate in:

  1. The Adventure Walk: Suitable for kids and families, walk the Park grounds visiting each of our Adventure Stations.  You never know who you might meet!
  2. 5K Walk.
  3. 5K Run.
  4. Remote Participant: If you are unable to be at This is the Place on September 11th, feel free to get one or more teams together in your community and walk or run for Hope!

When you walk or run to support HopeKids, you are raising the spirits of hundreds of kids and their families in their greatest time of need.  You are giving them the gift of HOPE!

It’s simple. Use this page to create your team fundraising page. From there, share the team page with family and friends, and spread the word about your WALK OR RUN FOR HOPE. You can walk the 5K or run the 5K.

You can collect “offline” gifts of cash and checks and list those on your fundraising page. Bring those donations with you to the Run/Walk in an envelope clearly marked with Team Name and total enclosed. You can also collect everything “offline” and not use a fundraising page.  (All checks made payable to “HopeKids”)

We hope you will show your support of HopeKids with your time and energy and help raise money when you come and WALK OR RUN FOR HOPE!

IMPORTANT NOTES:

Like last year, there is no registration fee, but we are asking that all teams raise a minimum of $100 for participation in the Wasatch Adventure.  Team sizes are limited to 5 participants.  If you have more participants, consider starting a second team!

Encourage your family and friends to support you! This could be donations to your team, or they could join your team and create their own fundraising page. Or they could create their own team and compete against you!


So Here is the deal, our family is going to participate in the Adventure Walk.  We are going to strap on the hiking boots and get the baby in the stroller.  We are looking for sponsors for our walk!  We are looking to raise $100 or more by the September 11th deadline.  If you can possibly help with $1 or two, I would greatly appreciate it.  All of the money goes directly to HopeKids and helps to fund the yearly activities that we can be a part of.

Please visit http://www.firstgiving.com/ameliaskidney and sign up to be a sponsor for our team!  As a bonus if you do sponsor our team, aside from the gratitude of our family and the satisfaction you get from contributing to a worthy cause, I have some free bonuses for you.

All of these products are very interesting and helpful.  They all come with Master Resale Rights as well.  The products are:

  • Starting your own online business: 96page ebook plus bonuses
  • How to develop the guts to talk with anyone: 46 page ebook plus bonuses
  • 404 Self improvement tips: 119 page ebook plus reseller icons and logos.

Please donate any amount to our cause at http://www.firstgiving.com/ameliaskidney and send me an email to justin@justinsbrainpan.com letting me know that you did.  I will immediately send you all three packages!  I will not even add you to any email list unless you want me to.

Thank you in advance for any and all help that you can give!

-Justin
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