Friday, March 29, 2013

a puddle day

Today was a great day for playing outside.  Lots of water, lots of mud, lots of puddles, lots of mess.  Luke had a great day today just being five.  There was birthday party for his little brother Jacob who turned 3!  I felt very blessed today to see my kids growing up so happy and well, all things considered.  I hope I never forget the simple pleasures that my children thrive on....presents, cake, and balloons.  What life is all about--celebrations and making the most of every day!  God Bless my Lukey and all his siblings.

Thursday, March 28, 2013


What is hope?  How does one live without hope?  What does it mean for me, for you, for our every day?

hoped, hop·ing, hopes
1. To wish for something with expectation of its fulfillment.
2. Archaic To have confidence; trust.
1. To look forward to with confidence or expectation: We hope that our children will be successful.
2. To expect and desire. See Synonyms at expect.
1. A wish or desire accompanied by confident expectation of its fulfillment.
2. Something that is hoped for or desired: Success is our hope.
3. One that is a source of or reason for hope: the team's only hope for victory.
4. often Hope Christianity The theological virtue defined as the desire and search for a future good, difficult but not impossible to attain with God's help.
5. Archaic Trust; confidence.
Here are some dictionary definitions of hope.  I know words mean different things to different people.  
For me, hope is the ability to continue on.  Not just continue on, but to continue on with great expectations, with anticipation for something great or better, with the expectation of better days! 

A few days ago, I was dusting off my shelf, and my life, and my "hope" some how fell.  It fell down, and made a big bang, and knocked my family down with it.  No, I'm serious.  See image below. 

This huge HOPE sign literally fell, taking down my family portrait with it.  I was surprised my hope and my family were not shattered.  Banged up, and a little upside down, scared from the fall perhaps, and certainly needing help to get back up, but NOT shattered, not broken, not even scratched.  Now I tell you, what knocks us down, what threatens to break us, what sends us flying and burdens us greatly, does not kill our hope.  

....we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character;and character, hope.  And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us (Romans 5:3-5).

I do not understand why we all have so much baggage, so many woes, so many trials and so many hurts.  I don't know why we suffer greatly, lose daily, and search endlessly for joy and happiness.  I don't pretend to be a minister, a philosopher, a psychiatrist, or a saint.  I just try and keep one thing in clear focus.  It isn't health (that would be AWESOME), it isn't riches (cause I can't imagine that well), it isn't anything but hope. I place little reminders around the house, little things, can go a long way.  

Hope and love....

Hope is "key" (ah ha ha).....
I know that regardless of religion, or non religion, people all need it, they need hope. 

Hope at Easter time for Christians is the hope in the coming of Christ.  He died, so we may live, he rose, showing us that he will also come again.  We hope in the coming of the Lord.

Hope with childhood cancer:

"Hope is the ultimate optimism--and one thing a cancer family cannot live without.  Hope enables you to endure the hardest treatment, overcome injuries to body and soul, and return to life.  Even the smallest flicker of hope, the tiniest flame deep within you, can insulate you against the arctic winter of cancer.  In the beginning everyone hopes for a cure, for a healthy, whole child and a family returned to normal.  Even those in our 'club' who ostensibly achieve that goal acknowledge that the sense of 'normal' is changed.  So, most families begin to take it down a notch and hope for short-term, achievable goals:having good blood counts, receiving good test results, or avoiding a nasogastric tube.  Later, we hope for a limit on disabilities, a smooth adjustment, continued remission, relief from pain, or a release from suffering.

Hope is fiercely guarded and should never be taken away from anyone.  When you hit the inevitable setbacks or get overwhelmed, when things are not going as planned, or when people around you have negative attitudes, hope can take a beating.  Without hope, you fall into despair and lose your way.  You can fan the flame of hope by focusing on positive possiblilities, surrounding yourself with positive people, reading hopeful stories, talking to survivors and their families, and turning to personal beliefs in spirituality or science or both" (Living with Childhood cancer, p. 55).

Don't let anyone steal YOUR hope!

Wednesday, March 27, 2013

simple day

It's a simple day when I can stay home and enjoy my kids.  There's nothing else simple about it.  There is still homeschooling, cleaning, working out, laundry, meals, fights to break up, crafts, snacks, diapers to change, children to bathe, you get the picture.  But the simple is in the mind..yes, my feeble feeble simple mind.  I set my day up for success by not sweating the small stuff, not aiming for perfection, and enjoying the simple.  A simple cup of delivered decaf coffee (thanks dad!), a simple play in the mucky yard (wet feet), a simple changing of winter to spring clothes --in this I am thankful for each season that Luke is well and here to share it with us.  A simple headache, ya, it's my excuse for this not so great post....
I can rest in the simple of the day, and let the anxiety, the chaos, the busy busy busy pass right on by..and in not glorifying those triggers of unhappiness, I can let myself enjoy the simple fact, that today I am alive and well, and that is simply----fantastic!

Tuesday, March 26, 2013

Punishment and Grace

I have a ton I need to do, but the big kids are playing out in the soon-to-be spring air, and the little one's are watching Netflix.  Uh, I mean, the big kids are studying about seasons and observing the change from solid to liquid as the snow melts and ...ah, who's kidding who.

I made some choices, not all good during my grief and anger of Luke's sickness.  I've stopped perusing some relationships and let them go.  I've worked on building a few new ones, tentatively, because making new friends when you are weak, makes you feel like you are only there to be saved and pitied.  I've been able to breathe easiest in the great, old, tried and true relationships that after so many many years, can hold up through this and, well, honestly, anything at this point. Phew for those ones!

I think a lot of the time that we were in the thick of the mess, I was angry.  REALLY REALLY ANGRY.  I expected nothing, yet expected everything.  I also expected that people would know what I did and did not need.  It would be cool, because I didn't know, so if they did, wow, they'd be...magicians!  I've been disappointed a lot by "those" I thought would be the one's picking us up, and shocked by "those" who did pick us up.  I am not at all surprised by HIM who lifted us up, higher above our mess and said, " look at me, don't look down, I'll carry you through, and you'll arrive."

I'm sorry for the pain I've caused in punishing.  I thought punishing people would make me feel justified in the disappointments, but of course, it only makes the wound deeper.  By punishing I don't mean I've pounded anyone out, I just give up...and walk away.  I don't pretend to be a perfect Christian, a model citizen, an example, one to inspire.  I'm faulty to the core, and learning daily.  I have a lot to learn about letting go of my "angry eye brows"--that's a veggie tales reference.

So, I've tried to punish, and it punishes me.  I am now working on grace and forgiveness.  I need that from others, and for others.  When I figure out that people are people.  They can not do what I expect or want, and I can not control them, it will be a better day for all of us!  I wish things were always happy and rosy.

Here's a great couple of  quotes I came across in reading Little Women, said by the girl's mom:

"I've been trying to cure it for forty years and have only succeeded in controlling it.  I am angry nearly every day of my life....but have learned not to show it; and I still hope to learn not to feel it, though it may take me another forty to do so."

p. 65
"Watch and pray, dear; never get tired of trying, and never think it is impossible to conquer your fault."

Amen to that, Marmee!  I like that!

Back to work, and back to Grace, I'll stop punishing myself and let others off the hook, cause after all, we're all doing our best.  I've seen who I can lean on in my worst and biggest nightmare, and I am truly truly thankful for that, as painful as the realities are, they are worth seeing.

“My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.  2 Chorinthians 12:9

new day, new season,new hope

Today is the last dose of the Prednisone, yeah! It will take a few more days to be out of his system, but he should be back to himself by the weekend for sure.  It was NOT as bad this month.  He was mean, and irritable, and hungry, and all that stuff, but I think the family is learning to cope better.  The new tactic, is "walk away."  That seems to work.  Give him his space, and walk away.  He needs lots of cuddle time too, which can be really challenging with Rebekah and Jacob needing so much attention.  I am pretty much a person that lives to serve the little people here, but that's what mothers of young children are..especially when there are five home full time, always.

In any case, Luke is really happy that today is grandpa's birthday.  When I told him he was 71, he flipped out!   He said "WOW! 71! That's GREAT!!!!"  I still have so much to learn from my kids, their enthusiasm and their sheer ability to see the great and not always the great and tainted.  I think I focus so much on the flip sides of all things, that I find it really hard to just see the joy, and not the bitter-sweet.  When a day goes by that I am not entirely preoccupied in my thoughts with death, disease, suffering, cancer, sorrow and pain...I will let you know.  I have a feeling I'll be in the yard doing a lot of digging and soil turning this year to get my mind off of and it's troubles.  Today I go to talk to my social worker, I'm not ashamed by this, I mean, if we take care of ourselves, then that's a good thing.  Going to the dr. the dentist, talking to someone, it's what people need to do to keep healthy.  Only who wants to do dredge up the "issues" and face them, out loud...ya, not so much, eh.

I pray that today is a great day, a sunny and happy day, a thankful and enjoyable day.  I am waiting on the hope and glory of HIM today as Easter approaches.

Monday, March 25, 2013

Holy Week--Holy blunder

I am missing the old days when we went to mass every single Sunday together, with granny and sometimes grandpa too.  It was a lot of effort to get ourselves there on time, but it was a great feeling in my heart.  Yesterday, I got to church, our new church, only to realize it was Palm Sunday.  All the years I spent teaching my kids, and preparing for Holy Week, in anticipation for Easter.  I nearly burst into tears as I realized....I had fallen asleep, head so wrapped up in cancer, chemo, steroids, hockey outing...
Just when I was almost proud that I "made it to church" with 3 of the 5....I am sitting there in disbelief that time and life float around me, and I grasp at so few things in it....

Luke will try to go to Easter service next week.  I am pretty nervous as a lot of kids and adults there are quite often sick.  We made it last year, but every day we decide on the day of.....

In early April Gabriel is doing his First Communion.  It was a HUGE big deal two years ago when Frannie did hers.  I feel like this time, it's a small big deal.  Not the meaning, just the celebratory part.  So much of our family and friends has changed, and faded away over the last 16 months...I don't know how to explain.  For Rebekah's baptism, we ended up having 3 guests.  It's a lot of reasons, and a lot of unknowns.  I hope for Gabriel's sake, that he feel every bit as much love in his small celebration as Frannie did.  I hope too that Luke can attend safely.  We will see.

Luke has not been to church much at all since dx, but we try and have him keep up his faith at home. 

I hope and pray that this Holy Week proves somewhat more Holy and less blundery...I must add that Jacob celebrates his 3rd birthday on Good Friday this week.  Pretty special.

hello dolly

Loving waking up to a boy that's happy, at least if it's only for a moment, and because he's playing the wii.  It's month 5 I think on the pulse of Prednisone,and I have been doing my own research as to how to help him through these hard days.  I found them saying that letting them zone out to computer or wii, or whatever-- is okay.  I like to have "permission" for this kind of activity as usually I'm pretty strict and only allow the wii on wiikends and the limit computer time as well.

He's not been too well on this pulse, but I have approached it with a different attitude.  So far, I've only fought with him, and acted like him a couple of times...remaining calm and loving when you have a psychotic five year old amongst your 5 children, is easy! I'm kidding, it's pretty insane actually.

At the hockey game, he had a hard time settling down, as they make him pace and wander around physically.  Majorly agitated. He was in heaven when we walked into the box and there was a HUGE bowl of popcorn sitting there waiting for "him."  He ate so much, the entire time--cookies, pepperoni, french fries and more that he had a really big tummy ache after.  On our way out the door, as we left a little early with the kids beginning to have melt downs, he couldn't leave the room without picking up and eating every last piece of pop corn.  It was kind of sad to see.  It was like he was compelled to keep going, even while feeling sick.  Boo.

It's kind of funny, to keep giving him the steroids each day, as he's having huge's like offering an alcoholic drinks...only in this case, in the end, it will help him.  I guess chemo is much the same.  Watching him take these chemos is so so hard, but knowing that they will save him and hopefully cure him, well, there is truly no choice.

I know one day we'll be done all this, and I pray and hope that Luke is all better and unscathed for the most part.  Getting there is very lonely and exhausting to be honest.  You know how in life, you can lose yourself along the way, well, we've kind of all lost ourselves over here.  I can barely have a conversation with a non-cologist.  I just can't relate right now to the normal that is life with out a kid with cancer.  It surrounds and dictates all that is our lives.  It's a long battle, and it's constant. 

At the moment, he's running around tormenting his siblings and begging for food, and singing about food.  This month, it's "nooooodles with salt and pepper, salt and pepper, salt and pepper and cheeeeeeeeeeeeeeeese1"  That is to be sung, not stated.

Each day I wake up and greet the day with a sense of relief that he is alive.  A sense of dread, that our innocence is lost and shattered, and probably not comin' back anytime soon.  Thankfulness that I have my faith and in the loneliness, my God is my best listener. Desire.  Desire for a calm spirit and heart.  A desire for ultimate HOPE and for forgiveness.  A desire to be less hard on myself, and not try and be super mom.  A desire to be a better mom, wife, friend, daughter etc.   A desire to serve my Lord and to find the silver linings. 

I'm begging for so much, but in the mean time, I'm accepting my life, knowing full well that we all have our burdens.  God, give me strength to use my weakness for something other than wallowing.

Sunday, March 24, 2013

I can't really begin it all again.  I've got it all of facebook, and all on Luke's friends on facebook, and Caringbridge.  It's all been said.  I think I've probably said way too much.

Luke was diagnosed at the tender age of just four, on October 28th 2011, at 6 pm, at the Children's Hospital of Eastern Ontario.  It was a nightmare.  We went into the hospital, and dreaded the worst, but really could never have believed it possible.  At this time, I was about 10 weeks pregnant with our fifth, had a 17 month old, and two older children.  We are dedicated to homeschooling and to had just been fighting along side both my father, and my husbands father both facing cancer themselves. 

I just remember thinking, No, it can't be, it can't be, we've paid our dues, it can't be. But, it was.  It is.

where I can breathe

I don't know how much needs to be explained and as so much has already been said for well over a year now.  There is no way to explain why we're at where we're at, except to just say it all...and it's so much to say, I'm exhausted just thinking about it.  And it's all been said so long, and so much before.  What's saddens me now, is how very very very little is said.

I wonder why when I  see people, and they very rarely ask "how is Luke."   If my whole life and mind and world revolves around my son, and his cancer, and silence is met, it saddens me.  I get that it's hard to talk about it, but trust me, it's a heck of a lot harder to live it.  So as far as it goes with me, I can't tell you about how others may feel, but as for me,  ask.  I may not want to talk about it at great length, but knowing someone care, matters.

I'm looking for places where I can breathe. Not places where I have to be careful what I say, not places where I have to hide, not places where I have to be someone or not be someone.  Wide open spaces that allow for poetry and creativity.  Where I don't feel obliged to solely give facts with no emotion.  We need places where when we run and scream and fall and weep, soar and crash all at once.  The great outdoors provide so much escape form the prison of my mind.  I am running in circles away from my thoughts and the fresh cold air is solace to my soul.  I breathe it in and wait for tears that just...don't fall.