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Posts Tagged ‘God’

You hear was the wind being suck out of our sails this week.  Gabe was scheduled to start maintenance Friday, yesterday.

No, he didn’t start maintenance yet.

Wednesday we spoke with Connie, the nurse practitioner who we deal with a lot at Children’s Hospital Oakland, and his counts had barely come up since Thursday last week. Gabe’s ANC has to be at least 750 in order for him to start maintenance.  As of Tuesday, he was a little over 300.  He was just very slowing coming up, and that meant there was no way we’d make it to maintenance as scheduled.

I was crushed.  I am so ready to make it to maintenance. It’s like this line in the sand that once we make it to there, we can begin to have a normal life. We will no longer be hostages.  Gabe will ultimately be able to go back to school.  We can go to stores as a family.  We can go to movies, eat out at restaurants – have a normal life.

Chet and I had started making plans for this weekend.  We were planning a nice weekend as a family, camping, going out for at least one or two celebratory meals. We were going to be like a NORMAL family.  Chet and I got our hopes up, even though we knew were shouldn’t.  We couldn’t help ourselves.

So, when Connie’s call came in, it sucked. My heart just felt so let down.  Not by anyone in particular, not by anything.  I was just so incredibly disappointed.

What’s silly is that it’s not like we are put off that long. We’re probably going to make it next week, but we’ll have to see.  What’s a week?  What’s two weeks?  Really, in the grand scheme of things, it’s nothing.  But, when you’re so tired of life being a constant unknown.  When every day presents a new uncertainty, the concept of maintenance is so alluring.  You just yearn to be there.

Admittedly, a lot of the “romance” of maintenance at this point is unrealistic for us.  We know that the first several months will be filled with a lot of tweaking to get the daily and weekly medications right so that Gabe’s counts stay stable.  We know that there’s going to be a lot of adjustment.  But, we’ll be in the coveted phase “MAINTENANCE.” That in itself will be huge.

So, tonight, we were supposed to be camping, Gabe, Rebeka, Chet and I.  We were supposed to have had fresh seafood.  We were supposed to have gone hiking.  We were supposed to have been celebrating.

Instead, we’re chilling as a family enjoying the bounty of our garden.  We’re harvesting, canning, and preserving. We’re following our advice “keep on keeping on.”

We’ll know next week where Gabe’s at and whether we’ll be able to start maintenance next week.

Most importantly, we know that God wants us right where we are at.  We’re content with that.  When it is time for Gabriel to make it to maintenance he will.  All along this journey, Gabe’s cancer treatment has been in His hands.  And so far, He’s been doing a pretty amazing job, so who are we to question where we are at.

On a side note – I mentioned today we’ve been harvesting.  This was one of our purple cauliflower’s that we grew.

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We made it.  The clock is started and the first dose of Nelarabine is done.

Gabriel and I made it to Children’s Hospital Oakland this afternoon around 4:30, and I don’t know why I’m always so surprised by how humbling it is to be here.  Within less than two hours of being back in the hospital I’m given example after example of how fortunate we have been and are throughout this entire process.  There is something about being reminded that we have been blessed beyond measure and no matter how rough our journey has been at times, our experience is really been easy compared to many many families.  Yet, thinking about how truly difficult this has been at times, I can’t even imagine how much more difficult some have it.

I don’t know why we’ve been so blessed.  The entirety of our experience has often forced me to reflect on some of the most difficult questions of my faith.  Why does God permit bad things to happen to kids?  Why do some kids suffer?  How can a loving God allow such adversity, difficulty and pain?

Truth is, I haven’t been able to answer my own questions.  I don’t know why.  But, I do know that for us, this experience has given us so much perspective.  I’ve become more compassionate to other people’s circumstances.  And I know that through the difficult days, we’ve been given opportunities to grow, each as individuals and together as a family.  And as backwards as it sounds, I truly believe that through LOVE, we’re forced to experience hardship because we grow and have experiences we wouldn’t ever otherwise have. By knowing and experiencing the hardship, we’ve learned LOVE. Not the emotion of love, but the action; LOVE as a verb.

It doesn’t make sense.  And, my heart hurts so much for some of the families here. And, as cliche as it is, “no pain, no gain.”  We have truly gained so much through all of the pain we have had.  I can’t say that is the same for every child and their family.  But, for us we have been so blessed by cancer.

Don’t get me wrong, if I could un-ring this bell, I think I would.  I HATE so much about it.  But, I can’t change the truth of our reality, and with the harsh elements of the truth, have been incredible experiences that I wouldn’t trade for anything.

Tonight start the official countdown to maintenance.  I am so grateful to be here.  Not only at this point in Gabe’s treatment, but here at the hospital.  We are surrounded by amazing nurses, doctors, and people here.  It feels oddly “comfortable” to show up.  All that we have standing between us and maintenance is 4 more doses of Nelarabine, a dose of Cytoxin, 8 doses of ARaC, two more spinal taps/lumbar punctures, one dose of Vincristin, one round of Peg-in-the-leg, and the wait for Gabe’s counts to come back up.  That’s it, and it’s so encouraging.

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Today marks six months to the day since Gabriel was diagnosed with t-cell acute lymphoblastic leukemia.  I wish I could say the past six months have been smooth.  I wish I could say the past six months have been easy.  But, I would be lying if I did.

The past six months have SUCKED.

Leukemia sucks.  Cancer sucks.  It’s a horrible disease that takes so much from the person suffering from the disease as well as all those who love and cherish the individual afflicted.

Compounding, at times exponentially, the toll of our journey as a family with Gabriel’s cancer, Chet and I have been faced with many other burdens, challenges and heart wrenching circumstances beyond Gabe’s cancer.  The past six months would have been difficult enough emotionally with the other things that have occurred in our lives – major health issues with close family, the death of a dearest family member, deaths of family of close friends, and more – yet, all this has been piled on the stresses of coping with a child who is fighting the battle of his life, for his life.

I’ve had many friends share this quote from Mother Teresa:

I know GOD will not give me anything I can’t handle.  I just wish HE didn’t trust me so much.

Last night, Gabriel was downstairs cleaning his bedroom.  Chet looked down the stairs to see Gabe sitting on the floor of his room crying.  We went downstairs to understand what was going on, and he was looking through a book of pictures of his first grade class, crying because he misses his friends.  He misses friendship, companionship, socialization, things 6 year old children should be able to experience.  Things kids his age should be experiencing, but he hasn’t because of the cancer.  He has missed out on those precious moments because of the horrible awful despicable cancer.  It took every thread of my being not to sit there and sob with him.

We had to make a decision at the end of the school year: were we going to advance Gabriel to second grade, or were we going to hold him back in first grade?  Gabriel was doing great in math, science, etc., but his reading is way behind.  Ultimately, we chose to hold him since he has been by far the youngest in his grade (he made the cutoff for kindergarten by four days), he is by far the smallest kid, and what was the point of pushing him forward.  It seems like it should have been a no-brainer, but it was a difficult choice for Chet and I.  We knew that Gabriel would watch his friends, those same friends who he misses, advance without him.  We knew he’s good to go in every other subject than reading/language.  But, we also knew that we had to do what was best for him, not what seemed like a “feel good” choice at the moment.

As my grandmother so appropriately phrased it for us, “he’s not repeating first grade, he’s finishing first grade.”  And that’s so true.  Because of his treatment he missed half the school year.

But, despite the decision being correct or right – the fact that we had to make that decision when Gabe’s missed out on so much with those friends hurts. My heart hurts.

However, despite all the tears that have been shed, despite all the sadness and difficult days, we are so blessed.  We are truly blessed beyond measure.

Six months ago – at the time this picture was taken, just a mere three days before I received the fateful phone call, Gabriel likely had leukemia raging throughout his body, but we had no idea.  He was happy, adorable, and just a regular 6 year old.

And, today, Gabriel still is a happy adorable and regular 6 year old thankfully to the keen observations of Dr. Christopherson and the swift response by all involved, particularly the Oncology doctors at Children’s Hospital Oakland.  The mere fact that today, a child whose body was being consumed by cancer is still with us is a beautiful and wonderful blessing.

We are blessed that Gabriel has responded incredibly well to treatment.  We have received so many enthusiastic responses from all of the doctors who have been involved in his care and treatment regarding his response to the treatment he has received.   We are blessed that we have a child who has tolerated the medicines, the poisons, the pokes, the tests, the doctors visits, and the isolation so well.

We have been blessed with a community of family and friends who have offered so much support, love, prayer and help when we’ve called for it.

We’re blessed that aside from one infection, our only hospital admissions have been routine and scheduled.

We’re blessed, because we have seen Gabriel grow into a little person wise beyond his years with a heart of love and appreciation for the silver linings offered by the disease, even when he’s otherwise upset about the less appealing aspects.

Chet and I have been blessed with one another.  When I’m weak, he is strong for the two of us.  When he struggles, I have the strength to offer to him in return.  We are blessed that despite some of the most stressful circumstances one can find themselves experiencing, we are more unified in our marriage than I believe we were before.

Laura Story, a singer and songwriter wrote a song “Blessings.”  The lyrics are spot on in so many different ways.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

(Chorus)
‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if the thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

I recently found out my aunt passed away over the weekend.  She lost her fight against cancer.  Cancer sucks.

I loved my Aunt Mary.  I have countless fond memories of my time with her.  Love filled, laughter filled moments.  Moments that I will carry continually in my heart.  My Aunt Mary showed me different ways to look at things.  She planted a seed for my love of cast iron cookware, my interest in cake decorating.  Through her and my Uncle Emo, I was introduced to the idea that regular people can have farm animals, can provide for themselves off the land, can be independent spirits.  Yet, for reasons I don’t know and probably wouldn’t ever be able to understand, she isolated herself from the family during her battle.  While I accept the decisions and choices she made, those same choices and decisions have left me baffled.  And loosing her to cancer just scraped at the slowly healing wounds of my heart relating to Gabriel.

Godspeed Aunt Mary.  I love you and will carry in my heart your smile, your laughter, and the beauty of your heart.

Next week Gabriel enters the second to last phase of his treatment – delayed intensification.  The next eight weeks will be difficult in our household as we again go into complete lockdown mode.  Gabe’s counts will be extremely low for the bulk of the summer. Chet and I are beginning to mentally, emotionally, and logistically prepare for this last phase. We’re ready.  We’re ready to get to maintenance so that Gabriel will finally achieve normalcy in his life. Until then, we are equipped for this next “battle.”

Please, continue to pray for us, Gabriel and my family.  We’ve experienced a lot already in 2011, and the year’s yet through.

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And, we’re all good.  It’s been too long since I last updated here.  These past couple weeks, I’ve just been exhausted.  It is really frustrating to feel so tire.  But, I’ve been tired, we’ve been pretty busy, and sitting down and writing hasn’t been a big priority.

I’m sorry for that.  These past few weeks have been somewhat challenging for me personally.  I’ve been trying to process a lot of emotions, and even though there hasn’t been a whole lot going on with Gabriel, the emotional journey has transitioned for me personally.

Gosh…where did I leave off and what’s been going on.  Gabriel has been making good progress since he was discharged from the hospital. Reflecting back on the time Gabriel was in the hospital, it was so amazingly difficult.  I hated every moment that Gabriel was there.  He was miserable, it was depressing being there.  During the time Gabe was in the hospital and after he was discharged, he was struggling.  It was essentially a 1-2 punch of things that hit all at once.  First, he had the infection, which caused the fever.  The doctors are pretty sure it was a nasty little bacteria called Cdiff which is present in all our GI systems.  Unfortunately, due to his super depressed immune system, this bug got the upper hand for a period of time.  Adding to Gabriel’s battle was the onset of Somnolence Syndrome with was a delayed side effect from the cranial radiation.

These two things resulted in Gabriel struggling to keep food down, not having an appetite, being exhausted, sleeping hours upon hours a day, and just downright miserable.  And, all the side effects resulted in him loosing 10% of his body weight in about 10 days.  So, once we were discharged, he was still dealing with the Somnolence Syndrome.  Gabriel became very weak and just not Gabe.  It was a truly difficult time for Chet and I to see our boy sleeping constantly and wasting away.  We felt helpless.

But, in the past two weeks, he’s made some great progress.  He has started Interim Maintenance, which is the second to last intense treatment phase before he goes into Maintenance.  His counts have finally rebounded, and rebounded with gusto.  His counts are pretty much like any other healthy person in the general population for the time being…well, they were at the beginning of this week.

Because Gabe’s counts had come back so well, he was able to attend the Fundraiser so generously organized by Eric and Melanie Troska.  It was such an awesome event.  I need to upload photo’s and share them.  It was amazing, and so many of you turned out and made it possible, and it resulted in proceeds which will truly help us with several of the expenses associated with Gabriel’s treatment.  I can’t express how extraordinarily humbled and grateful Chet and I are to have the support of friends and family.  We love each of you so much and can’t begin to demonstrate our gratitude.

Chet and I are still obsessive about protecting Gabriel, even though his counts were doing awesome.  It’s so hard – we’re so scared of him getting sick and we don’t want to delay his treatment with an avoidable infection, so we’re still very cautious.  But, Gabe’s been able to get out more, and that’s been a good thing.  At least for the time being.

He had his second chemo treatment in this cycle on Monday.  They say that the meds can bring his counts down, and we only find out his counts about once every 10 days right now, so we still try to play it safe.  So, on that front, he’s doing terrific.

We’re again facing the unknown about potential CNS (central nervous system) involvement.  Unfortunately, the hospital here in town where they’ve been able to do Gabriel’s spinal taps and intrathecial chemotherapy treatments has been having problems preparing the slides for the Pathologists to evaluate.  So, again we’ve got to have a follow-up spinal tap down in Oakland so that they can look at the cells and make sure there’s nothing funky going on.  Chet and I don’t have the level of stress that we had the last time we went through this, but there is still a significant level of anxiety associated with having to go through this again.

The other problem arising out of the inability of the local hospital to properly prepare the slides is that all future spinal taps will have to be done in Oakland, at least for the foreseeable future.  So, while we were supposed to have a break from regular overnight trips to Oakland for a couple months, that’s not going to happen.  Oh-well.  At least we got a couple weeks in there.

So, that’s the update on Gabriel.

Rebeka’s doing amazing – she’s fully engaged in being an active two-year old.  Chet’s running.  And I’m surviving.  I have moment’s where I am struggling finding myself in the experience of life right now.  I’ve gotten to the point where I realize I haven’t been taking care of myself – at all.  So, now I’m trying to figure out how to find time and motivation to tend to myself.  So, that’s my personal struggle.  But, I’ve come to realize that I truly need to find another coping mechanism beside eating.  I joke that I’m a stuffer – I stuff my emotions and I stuff my face to deal with my emotions, and four months of stuffing is truly taking its toll on me.

Okay, my commitment to you all is to update more regularly.  Chet and I will greatly appreciate if you will continue to pray for us.  We feel each and every prayer, they give us strength.  Pictures and more very soon, right now, it’s time for me to hit the hay and get a bit of sleep.

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Years ago, a good friend of ours, Jim from New Zealand, used a term when encouraging Chet about running his first 100 miler – R.F.M – which stands for “relentless forward motion.”  Jim was instilling in Chet the mentality that to achieve your goal, to cross the finish line, you had to just continue to put one foot in front of the other. You must continue with relentless forward motion.  It doesn’t have to be fast, it doesn’t have to be steady, it just has to be relentless.  No matter what, you’ll take that next step closer to your goal, the finish line.

It occurred to me this evening that those same words, that same concept is applicable in so many aspects of life.  And for Chet, Gabe and I, we just have to keep it in mind – R.F.M.  Eventually we’ll get there.

This is the race of our lives, it is the battle of our lives.  And, we haven’t won the war until Gabriel is all better.

However, the last couple days I was down, really down.  I was angry at myself that some how we had let something through the defenses.  I was sad watching Gabriel be clearly miserable while dealing with whatever it is attacking his body.  I was worried about whether or not what he was going through was normal.  I was scared about what the bigger implications of fever might mean.  I was anxious about the potential financial burden another air ambulance ride to Oakland might mean.  All of this was truly just breaking me, plucking away at the last threads of strength I felt as though I had left in my soul.

Then, this morning it just felt worse.  We received some concerning news regarding Gabriel’s blood counts from this morning.  What we were being told was mind boggling and beyond comprehension.  We were being told that Gabriel’s platelet counts looked to have plummeted overnight – to the tune of 200,000.  We had no information on his ANC, which we had been told was 88 the day before (keep in mind a “normal ANC is around 2500 to 3000).  His fever had spiked again the night before.  He had been vomiting the day before.  And well, his body was just being beat up.  So all of this just felt extraordinarily overwhelming.

However, even though it felt like there was so much not going the direction we needed it to be, there is always a glimmer of hope through faith.  Although, honestly, I was having a very difficult time seeing that glimmer.  That hope came in the form of one of the treating oncologists from Oakland Children’s Hospital who was in Reno for the Reno clinic,  Dr. Torkildson.  The first round of encouragement was when he was shocked to find out that this was Gabriel’s first fever since his diagnosis in December.  According to the doc, it’s extremely common for children with leukemia to deal with fevers and even more so for kids with t-cell leukemia.  He answered all of Chet’s questions and gave us both the comfort that Gabriel was being given the best possible care here in Reno as he would have received in Oakland.  Yes, we’ve become pretty partial to the Oakland folks.

The next round of encouragement came through Gabe’s temps throughout today.  All day he was hanging in the mid-99 range without any medication to treat the fever.  More encouragement came in the form of final blood test results from today.  The early numbers were just bad, as the blood sample had coagulated on its way to the lab.  So, the second blood draw and testing showed that Gabriel’s ANC counts have come up to 300 even though is platelets have come down a very small amount.  And finally, capping off a trickle of good information was the fact that this evening when Gabe’s temps usually spike to above 101 and into the 102 range, his highest temp today was 100.2 without medication.

Relentless Forward Motion.

Truly, there are days where this journey feels like an extraordinary challenge.  There are moments where I doubt my own ability to hold it together.  Yet, just when I’m pushed so close to what feels to be my breaking point, the pressure is relieved and I’m able to take a deep breath again.

I don’t know what the purpose of this is, but I’m content to never know how much more I can handle.  Sadly, I don’t believe for a second that I’m not going to be challenged again.  Yet, this experience is strengthening me to be prepared to handle the battles that are yet to come in order to win this war.

Right now, Gabriel’s still got a lot of road to cover before he can be discharged from the hospital.  We’re not in the clear as of yet.  But, we’re a couple steps closer to that outcome. Prayers work, positive thoughts and encouragement is so appreciated by Chet and I.  And, for Gabe, well, I know he just is ready to get out of the hospital and start feeling better.  Right now, he just doesn’t feel good and honestly looks utterly miserable.

Thank you for all the love and support.  You, our friends, are appreciated and cherished continually!

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Gabriel and I are back at the hospital and things are going smoothly so far.  We had a little bit of a wait before we got admitted, so Gabriel just was silly passing time.

At first Gabe was just solemn huffing and puffing a lot behind his mask.  But, then his mood improved and he started doing a little shimmy dance around the waiting area.

We finally got admitted and assigned a room.  Once we got settled, it was pretty quick and Gabriel was just being his normal self, a lot of smiles mixed in with a lot of attitude.  Unfortunately, the “tude” doesn’t photograph well.

And, well, sitting around a hospital isn’t THAT exciting while waiting for your chemotherapy treatment to start, so it wasn’t long until he was keeping himself occupied playing Lego Star Wars.

And having fun at the same time.

Finally, around 9:30 last night they got his Nelarabine treatment started.  It was just another day at the ranch taking the chemo.

The Sandman found us around midnight and all in all it wasn’t too bad of a nights sleep.  This morning we woke up to rain showers developing into rain.  Just another day in the hospital here in Oakland.

This whole experience is just truly humbling.  I think Gabriel expressed it as well as anyone can the other night as we were driving home from the St. Baldrick’s event.  We were talking about how difficult the experience is, that it’s not fair that children have to go through this, and that cancer is a pretty horrible disease.

However, despite all that he has been through, Gabriel says:

“I’m a tiny tiny bit glad I got this cancer.”

He continued:

“Because, if I hadn’t I wouldn’t have learned so much.”

Gabriel is absolutely right.  As a family we are a tiny tiny bit glad this happened.  We’re gaining so much right now, and I know we will continue to gain so much as a result of this experience.  We continue to meet people we’d never otherwise have the pleasure of getting to know.  We’re learning things about the amazing human nature of people who are friends and family. We’re learning, continually, about the grace of God.

And, even as Gabriel experiences the physical toll of the cancer, the emotional and psychological toll of isolation, even he is able to see the silver lining on this very dark cloud.  There is a pretty large dose of perspective.

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Yes, I did just quote Joe Dirt. And, yes, I will freely admit to loving the movie.

Life’s a garden, dig it!

Image from http://www.themoviedb.org/movie/10956.

Anyway, things are moving along for Gabriel.  We’re starting to see a more frequent occurrence of morning nausea.  But, the Zofran does the trick in a jiffy and he’s back to his happy normal self within minutes, literally.

Yesterday, Gabriel had his first spinal tap/intrathecal chemo here in Reno followed up by starting week 2 of his ARaC and 6MP (a.k.a. mercaptopurine).  Gabriel has really maintained his high spirits throughout all of this, and for that we are just so incredibly grateful.

It was a relatively easy visit.  Gabriel occupied himself by removing the wrappers on the cheap crayons.

A little while later, Angie the Child Life gal, brought Gabriel a Valentines Day gift.

Then, ultimately, it was off to surgery, recovery and then chemo administration.

Tomorrow Gabriel will be getting another blood transfusion.  His counts are rapidly on their way down, especially his hemoglobin counts right now.  So, tomorrow morning Chet and Gabriel will head into town for a morning refresher, I mean, transfusion.  Hopefully that will hold us tight until next week when we’re in Oakland for his radiation.  He may need another transfusion next week, hopefully not, so only time will tell.

So, there’s the Gabe report.  He is doing great so far.

Thank you so much to everyone for all the thoughts and prayers you have been offering and giving these past couple months.  They truly mean so much, and as you can see, Gabriel is really doing quite well. Chet and I ask that you continue to pray for Gabe, and for us.

As every day goes by, in some ways the path gets more consistent, but right now it’s not any easier for us.  Granted, we’re doing well, but there are those moments when we both just feel utterly overwhelmed by the entire experience.

We never imagined that this would be a path laid before us.  I could have never imagined how difficult this journey would be.  And, it’s impossible to describe and express what it feels like.  There are so many balls that we are juggling and struggling to keep in the air, and so often we have to be reminded that we can’t rely on ourselves to give us the strength, perseverance and stamina to make it through the end.  Through this experience, we are finding ourselves more deeply rooted in our faith than ever.

It is so often remarkable to me how I, through my faith, diminish the angst because I know that the bigger picture items are completely out of my control.  And for me, to not bear the burden of all of this allows me to cope just a little bit better.

Unfortunately, the oppressiveness of the physical effects at this point feel unavoidable.  I never in my life imagined feeling so totally, completely and absolutely exhausted.  The phrase “burning the candle at both ends” has nothing on how this can just sap the very life from you.  And, that is my struggle at this point in time.  Hmm, maybe I need a blood transfusion.  Just kidding.

But, I know that for us, this too will pass.  Experiences, challenges and happenings in this life are placed before us not to hinder us but to temper us, making us stronger and less brittle and more resilient.

The LORD is my shepherd;
I shall not want.
He makes me to lie down in green pastures;
He leads me beside the still waters.
He restores my soul;
He leads me in the paths of righteousness
For His name’s sake.

Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.

You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the LORD
Forever.

Palm 23

How right Joe Dirt was – life is a garden, we just need to dig it.  We are given a fertile field of opportunity, and when we cultivate it with love and care, we are rewarded with so much.  It is not easy work, it is tiring.  However, after all the hard work, we are rewarded with abundance.  And, that for me, my friends, is an amazing breath of fresh air.

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