Oddities, Profundities, Profanities and Dad Stuff

Category: Family (Page 4 of 21)

SAHD Friday: The new one slows us all down

This title proves prophetic today.  I had forgotten just how much an infant forces you to slow down certain things.

Over the past 2 weeks I have had to slow down many times, with my writing and housework and yard work.  I have watched more movies and tv shows in the last 2 weeks than I have in the past 6 months when I started this whole online venture.

I have been writing about unplugging the past few days and I think that he has a lot to do with this.  Now, if you have read any of this blog in the past, you know that my family is very important to me.  I love doing things with my kids and I really am excited to watch them grow and develop.

It is so much fun to see them grow and change through all of the ages.  It is fun to see their tastes in music and movies change and mature as they grow.  It is also fun to see what the new one will choose when he can control what to watch.  My 4 year old is finally gtting into some of her own things and not just copying her older sister.  My son has always kind of done his own thing, it will be interesting to see if my new son follows him or does something totally new.

I think it has been good for all of us to just slow down.  It has been good for me to get off of the computer and just hold the baby for a couple of hours at a time.  These are the times you can’t get back if you miss them.  This is exactly why I am a dad.

Being a Stay At Home Dad allows me to see all of these milestones.  These 4 kids I own make me want to work my butt off and be able to stay home with them and all of the things that they accomplish.  I can’t recommend it highly enough.

Have a great weekend!  We get to watch fireworks tomorrow!

-Justin

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Ruminations from the woods…

**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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Nothing But A Pile Of Sticks: Part 4- The Hotel and The Search

Boba Fett

Image by Sam Howzit via Flickr

So by now you know of just some of the crap that has completed our lives here at the Matthews house over the past month and a bit.  I have covered the reality and the move so here is the next chapter in the saga.  I could only wish that this saga chapter four was in any way comparable to another saga chapter four namely “Star Wars”.  But alas, as much as I would like to be, I will never be Boba Fett.
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What Tourette’s syndrome will teach you about coping.

I have been reading Josh Hanagarne’s World’s Strongest Librarian blog for a while now.  He has helped me realize that life is, well, livable, no matter the trials.

Laced through his blog is the “How to Have Tourette’s” series.  He is currently at part 22 and they are continuously informative and inspirational.  Through his eyes and magic fingers, we see that while he has Tourette’s, Tourette’s does not have him.

There is much to be learned from this.   Now I am not a doctor, nor do I play one on the internet.  I do not pretend to know anything more about Tourette’s than I have read on WSL.  I do however know that it is not just the weird guy screaming profanity crossing 13th east and the stereotypes that have been perpetuated in popular media.

It is not funny, and it is not something to laugh about.  It is debilitating and insidious in its forms.  So, what can Josh teach us about?  Living.  Doing whatever you want to do despite what nature has dealt.  Own the disease, don’t let it own you.

This is a trait that I really want to pass on to my kids.  My youngest daughter was diagnosed with kidney failure when she was 11 months old.  It took 2 years of dialysis and hospital visits, including 2 major surgeries and 9 less major surgeries, before she got a kidney transplant. She is now almost 1 year post transplant and nearly 4 years old.

I want her to have much the same philosophy as Josh.  While she has kidney failure, it will not have her.  She was amazing through all of the tests and surgeries, just rolling along and doing what was necessary.

She did 4 four hour sessions of dialysis every week without much complaint.  Some people will say that it is because she is young and kids will adapt.  That may be some of it, but there is a personality that can handle these trials.

She will be on medication for the rest of her life to keep her body from rejecting her new kidney.  This kidney will also fail at some point in the future.  At that point she will be back on dialysis and hoping for a new kidney.  We, our family, know this, and it is okay.  We are going to go on living.  We are going to make her strong with Kettlebells.  We are going to teach her to be mentally strong and be prepared when this kidney fails.

We have an online role model in Josh.  We will go on as long as we can with what we have right now.  We will push for our goals and take the setbacks in stride.  We won’t let kidney failure stop her or our family.

He is a role model for me because I need to be physically prepared for the day when her new kidney fails; so I can give her the next one.  I don’t have a disease that precludes me from anything, unless laziness is a disease.  I am giving myself 3 years so that I can be ready for the RKC cert, physically prepared for anything.

Thank you Josh for teaching us how not to be owned by your trials.  You are a continuous inspiration.

Thoughts?  Comments are open below.

-Justin

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