Friday, September 13, 2013

an aching beauty

There is an aching beauty in the fall, as the season of summer closes and fall begins.  The sun shines in such a way that it makes you somehow feel like you are about to enter a new place.  A place of golden and orange, a place of warm colours because the air is cold and crisp.  It has an almost eerie silence to it, as the leaves dry and fall down, and the grass gives up its green, for brown.  The fields of corn that surround my house, are both like a blanket of coziness and a suffocating barricade.  Fall.  It leads to the thoughts of indoor winter days and worries of bad driving weather.   This winter I wont let myself be paralyzed by fear, sitting in one spot, going in circles-- motionlessly.  It leads me to feel such a deep sense of perfect beauty, somehow marred with sadness...sadness as things die and decay, and the fresh greens turn tired and succumb to yet another wintering over...only to start it all again next year.  Sure as sure enough, you know it will all die, rest, begin again.  Regardless as to what I do, or don't do, what I say, or don't say, what I see, or don't see...it just will.  It's reassuring, and yet the thought of it, exhausts me.

I see the sky and it looks like a painting hanging on another painting.  The sun hits things in a slanted way, and the ache and pain washes in and off me and the air is holding my breath for me.

I enjoyed yesterday to it's maximum capacity. I saw the silver and gold linings.  I felt such satisfaction in such simplicity.  A baby tooth lost, a smile so broad, so proud, a moment so precious, it pierced.  I enjoyed the ugly in knowing there would be great beauty in the spring.  I see the hope and the new life that comes with this hope.  I felt things on a level that was profound, I hoped it would wash over me, but instead it penetrated deep into my heart, where I can hold these images, this face, these cheeks in a memory, only my heart can hold.  It was too perfect.

I hold onto that tooth, the tooth fairy tooth..I hold it and I cherish it like a mad woman.  I tell myself, 'he made it this far!! he got here, another milestone, he's alive, he's alive!!!' But. then my brain turns somber and I hide this baby tooth away, in a small box, a ring box, with the date, the name..I tell myself, what if he dies, what if this is the only thing one day I have left of him..physically.  Then I beat myself up for allowing the dark thoughts to take form.  Holding the little box, I hide it away, I tuck it away, like the dark dark sinister, hopeless thoughts that make me feel so unworthy, so un-Christian.  I close the lid, another lid, the drawer, the door. I walk away, knowing I have a small, sweet piece of my son.  I hide it away and pretend it's what any mother would do.  I hide it away, because no one wants to hang out with a woman with 5 kids and a mess of a mind.

It's fall, there is a sweet, sad, hopeful aching beauty, a dying of one season, with a rebirth that is guaranteed to show itself.  Now we just have to make it through and seize it.  But it wont be enough to just make it through, because that's time wasted, and we know how precious days and moments are..press on.  Press on and embrace the glory of the sun, the crunchy leaves, the fallen corn stalks, and the hope of the coming season.  Each season has it's place, it's purpose, and to find the lovely in each one is my mission, my only hope.

Wednesday, September 4, 2013

September ..gold is EVERYwhere.

It's September.  It's back to (home)school.  It's back to cool night and crisp mornings.  It's back to childhood cancer awareness month.  I am seeing gold everywhere, and I love it, and I ...hate it.  It's hard to not going around in circles...in my brain it sounds like this:
"wonder how Matteo is doing, must wash the apples, wonder if Abby is okay, why is the baby crying..dear Lord, let Nicco be alright, time to switch the laundry, thank God Cameron is done, hope Luke is not going to relapse, lunch time now? What about Sam, is he doing okay..."
And it goes on and on.  I check in on these children constantly, because that's where my heart is at.  I care. I think of the children fighting since they were born, those finishing, and dealing with anxieties, those beginning, those in the middle, those re-starting...those who have passed...I think a lot, all day, about these kids.  About my kid. About CANCER.   I think that September, and the awareness month is brilliant.  Hopefully people will realize how little funding kids cancers receive.  Hopefully people will make a change.  Donate, spread awareness, help fund research, help cure these kids, without the constant torture they are made to endure.

It's hard to keep telling my child, nearly two years into treatment..no, no dear, not done yet.  He will be as many years on treatment as he had lived off treatment, when he's done.  It's ludicrous.  Yet, it's hopeful.  I try and  remember always that we are lucky, he has a great chance of a great life.  I know we are lucky. So lucky.  Yet, some how it seems like someone missed the mark on it being easy.

I am embracing the fall harvest season, planning for a good and healthy winter, with frozen foods from our garden.  I am planning on a winter and a fall, and a spring. I wouldn't let myself think that far ahead before, but I am planning on a good year.  I don't see anything the way I once did.  I don't see it simple, or mundane.  I see it all as privileges.  Borrowed time. I see it all as brand new.  I see it all as small miracles....

My boy is now in Grade one.  He is not complaining.  He is eager to learn, to sit, to try.  He is eager to be a big boy, to know how to read.  He is eager, and I am thankful.  He sheds a new light on all our lives here at home.  We begin school, knowing..we have two days before chemos and steroids.  We begin fresh and know we do our best, on the days that we can, because some days, we wont be able to do this..those days, we just try and get by.  We look back as we post pictures, pictures to remind us, and others of what a cancer kid looks like.  They look like every parent's worst nightmare, they look afraid, tired, sick, frail, steroid puffy, they look weak, they look angry.  A lot of the photos also show Luke happy. Happy enough to give the camera a smile.  Happy enough, because there is no choice.  I do feel that the profound sadness and stress experienced through this life threatening illness, is not all bad.  It has lead our family closer together, it has strengthened our faith, even when we could not attend church. It has shown us that people can not save us, no one can save us, but God himself.  It has made us humbled, it has reduced us to nothing but whispered prayers, and hope.  From the ashes, we will rise, and hopefully we will be able to help and love others in similar situations.

I talk to Luke, those tender talks at night, when he should be asleep.  He talks about such wise things.  He talks of heaven. He prays diligently for others. His voice, and his words touch me deeply, and I hold onto these quiet moments as treasures that can not be contained in any place, but my heart, and head. I am very very pleased with my son.  He has endured more than any child should, or could, and he has issues, yet, he is a beautiful soul.  I see September. I see gold. I see pictures and post of children, sick and some healed.  I see families going through horrible times. I see smiles, and hope, I see a lot of people acknowledging the battles these warriors face, and honouring them. I see Luke, and I see a future that is bright!
Tomorrow we are back again, at the hospital for IV chemo, then his 2 oral chemos tomorrow night, then his steroids and tummy meds for steroids.  It will be yet another day, where I will feel deeply saddened, yet deeply thankful that 'it's only this.'  Please continue to pray for Luke and our family, as the constant meds are taking a toll.  Steroid pulses are difficult on Luke and his siblings.

Monday, August 19, 2013

more journys in faith and health and healing

My goodness.  I feel like we are living this summer in hyper mode.  We were blessed by my grandma with some spending money, to use to DO fun things!!  A family of 7 can have a lot of fun at home, and we do, but it's nice to have some funds to go and do things, like other families do.

We have deliberately done many many fun activities as we could do none last summer.  I find that Luke's cancer has taught me so much.  I am learning that it IS a life changing experience to have a child with a life threatening illness.  It makes us want to truly enjoy each moment, each day to the fullest.  Even the days, like most days, where we are home, just us.  I am trying to offer the kids some chances to experience things and to see the blessings.  The local fair, cancer camp, fishing, friends and pools, play structures, library programs, vacation Bible camp and more.  I am so proud of them and their exuberance for life, for fun, for counting each blessing, and living each moment.  Kids really truly know how to enjoy life, in the moment...not crying over the past, not worrying about the future.  This is for mama.

I've seen their faces shine and eyes light up, hair blowing in the wind...jumping in and out of the kiddie pool, dancing in the sand, picking fresh carrots from the garden, running through our corn, simple pleasures, that cancer has shown us, are not always so simple.  Last summer, Luke was really really sick.  I am hoping and praying that he continues on, for the next 18 months until treatment ends, in good health.  But..you just never know.  I believe he will conquer his Leukemia, but..in the back of my mind, I dread. 

Our faith has remained fierce, though our church journey has been kind of bumpy.  We could not attend church for nearly a year, while Luke was on intense treatment.  For a family ENTIRELY grounded in our faith and hope in Christ, this was shattering.  We tried to go, but Luke was so unwell, we took turns, but slowly we found ourselves..not there.  We then came to our lovely, local church.  This was also a new experience, during PTSD.  Our children, our lives our faith, continue on, and journey on.....seeking God, his people, and a tight faith community is what the family is searching for.  Are we not all seeking comfort and peace?  Are we not in need of others, and for our story to be told, heard?  What makes the world connect, but connectedness.  We pray, and we search, and Jesus will let our minds and hearts rest easy in HIM.  I know this.  Luke is full of the spirit.  He sings, he prays, he has a deep love for God.  I feel blessed that he is assured in his faith. 

I see so many relationships we've had, falling away...I can't mourn forever over this.  I can ask for forgiveness, I can forgive.  I know life has strange ways of working things out.  I wait for patience and I wait for healing.  Healing of my boy, my family, my heart.  I think we keep quiet, yet want everyone to know about Luke.  How can we not want the world to know.  To help other kids like him.  To continue to pray for him.  To raise awareness.  To keep HOPEful.  I can't believe we are coming up to the two year mark.  Yet, I think of cancer all day still, each day.  Maybe because we are still in treatment, giving daily chemo, always checking for evidence of ..the worst.  I keep traveling, moving forward, leaving behind the baggage we don't' need, keeping my eyes focused on what matters.  We are thankful.  We are blessed.  We are forever changed.



Wednesday, July 31, 2013

How do you do it?

Oh my gosh, I can NOT do anything with 5 kids.  I try.  I fail.  I take them out, and they miss naps, I have 3 kids crying,  I have two ignoring my pleas for help.  I say words I should never say..I am failing at this.  I can not keep a house clean, I can not make proper meals, I can not rest, eat, settle, get anything done.  I'm home or I'm chaos.  I am chaos today, and I hate the disorderly side of life.  I think from here on in, I admit immediate defeat, and I stay home.  If you wanna see me, please call and come by, it's just too hard to take them anywhere!

the long journey

I am pretty sure that along this journey, I've screwed things up...a lot, and often.  I tried to be friends the way I used to be..where I'd listen, and talk a bit, and listen, and listen, and talk a bit..but in hindsight, I couldn't really speak or hear.  I was trying to still be there for others, but not really able to relate or hear. It was/is like I'm under water.  I see you, and I want to be me, but I am not sure it's getting through.  I want to say it all to you too, to tell my broken heart to you, to cry on your shoulder, to lean on you, to call at any hour, but I don't.  I hold it all in.  It spills out in furious jogs and obscure blogs.  blogs and jogs, it seems to be the reality of it for me.
I can't put my finger on it and name what it's called.  Is it tragedy, trauma, grief, post traumatic stress disorder?  Is it truth? Is it lies?  Are you honest with me?  Do you keep things from me that you think may hurt me, but in turn, it hurts me more?  Do I tell you truly how I feel, how I cope, how I fail, how I flail?  Who talks to who?  Who shows their truest selves?  What are the consequences?  It's the sign we put up in our cluttered country living rooms that say "SIMPLIFY."  It's the makeup we plaster on our faces, for the "natural look."  We show only so much, like a small corner of a page, it's not really an open book, it's just the table of contents, cleverly hidden, and falsely advertizing.  I used to think that as I was alone in the long and horrible journey of childhood leukemia, for my boy, that I would want, that I had, that I needed the world here, in it ...with me, to save me from drowning.  But...the truth is, we are all in it alone.  Not that we are not loved and supported, but we do it alone.  We have no choice.
I think the more we talk and listen, the more we will all  hear.  The more we hear, the more we can relate and somehow that breaks through to the dark place fear lies.
I call out to my God to rescue me.  My cross around my neck will not save me.  My attendance at church will not fix me.  My God will save me.  He will pick me up where I am, and He will let me talk and He will be honest, and he is available at 3am, and I will let Him.  I cry for my friends and their struggles.  I see the pain, the suffering of mothers who can not enter the hospital without severe anxieties.  I know the medications prescribed to not only their battling babies, but to them, themselves.  Sometimes the fear is so great it threatens to swallow us up.  The marriages that teeter back and forth, hovering over dismal failure.  The other children who fear for their siblings and their own heath.  The communities that hold their breath, hoping this child "stays well."  The answers we give, always..."things are ok, thanks."  If things were okay, really okay, no one would have to ask.
I can see my old life..it's in the pictures, it's flashing in the background like an old movie.  I can not look at the pictures of him when he was so so sick anymore, it makes my feet sweat.  It's a journey, a journey no one plans to be on, and one that must end well.  One that ends with peace, with love, with a healing deeper than chemotherapy can provide.  I am traveling with my boy, with my family, to find that  healing. It's a really really long journey, but I am I am thankful for the time, and sorry for the roads that have been left behind...

Wednesday, July 24, 2013

When you say nothing at all

When you say nothing at all, is one of the BEST Alison Krauss songs I have ever heard. sigh. I wish I could sing like that.  I tell you to do what you are supposed to do, and maybe you listen, and maybe you don't.  Maybe you need to find your own way in life and make the mistakes we all make.  I sure know that I have made plenty.  When I offer my advice, I am only hoping to save you from yourself.  From that anger that rises up and threatens to crash down..and actually, does crash down.  When I say nothing at all..do you stumble and do you trip?

  I hate when you offer advice, but when you hold your tongue at times, I wish you would say something.  I think we never really can do it all on our own, and yetwhen we are helped, it brings on a love hate relationship. No one wants to be alone in their suffering, and no one wants to be exposed in their weakness.

When a heart is disturbed, broken, or plain old aching, and you know that heart is aching, and yet you look, but say nothing at all..what does that say?  Does it say, I know, but I wont say.  Does it say, I don't know, so I wont say.  Does it say, I pretend I don't know, so I don't have anything to say, seeing as I pretend I don't know.  I guess it all depends, doesn't it.  I am a chatty person.  I say it all...mostly.  I mean, if I know you are needing to talk, I am likely to pry it out of you..and if you are not needing to talk, I may pry it out, and offend you.  I can't stand the though of the hurt growing like a cloud ready to storm down.  When you see the eyes of that someone, that person that's dealing with more than they can manage. More than they need.  More than is possible, and we 'say nothing at all'  I wonder how much further back they may recede.

Yet..we all have our own crosses to bear.  Of course, some seem more burdensome than others, but we can not know for sure.  I see relationships planted, grown, flourish, yet sometimes, the soil for the relationship isn't quite right, or the tending isn't quite...careful enough.  Sometimes the relationships grow and reach the sky, and mostly I see they fall short, the crop dies out and and we wait for new seeds, or we let it be fallow for a year or so...to see how the soil can recuperate.  I think planting slowly, carefully, and selecting a few seeds is often easier than throwing a whole handful of seeds to the wind and seeing where they fall and prosper.

When you say nothing at all...can often be a way of silencing the busy and the bustle, and when we wait in silence, then maybe we actually can hear.

I truly don't know..I say every thing at once, and throw seeds willy nilly.  But there is always time to learn.http://www.youtube.com/watch?v=1SCOimBo5tg


Monday, July 22, 2013

running bare foot

Strip off the socks, strip off the shoes, the flip flops, the sweaty sneakers, the crocks.  The wet grass feels like heaven.  Let the sticks poke you just a little, let the sand get in between your toes.  The feet that sink way down deep in hot garden soil making prints that will fill with rain water when it comes.  Let the risk of a sliver out weigh the safety of the shoe.  Let the hot sun bore down on the tops of your feet, let the feet get dirty, let them feel what they walk upon.  Let the bare feet get good and used to being free while they can.  While your feet are free, you can't wait for the other shoe to drop.  You can't feel the ties binding, and the restrictions of germs and icky floors, of all you have been warned about.  Just let the summer soak you up, and walk with confidence.  Precious moments come from such simple pleasures as these.  Remember well the days you could barely walk, where you flopped like a rag doll, asleep on the grass, the wagon, the couch.  Never dwell too long on the suffering you've endured, but never forget it the same.  These are the SAME feet, the same ones that walked and limped the halls, these feet will lead you through life, in HIS footprints.  Let them out for a romp, my boy, let them be light and let them enjoy the goodness of what's to come.

Deuteronomy 5:33 You shall walk in all the way that the LORD your God has commanded you, that you may live, and that it may go well with you, and that you may live long in the land that you shall possess.

Friday, July 19, 2013

Acute





 I would rather live in a state of acute tenderness to one's suffering, than a stagnant, nonchalance to the agony of others.
  While you live in a world frozen in uncertainty, wondering--how can the earth can still turn, while you are petrified....
Should life really continue on, as grief engulfs?  What happened to the old traditions of mourning?  Where people were more aware and attuned to each others grief --as black was dawned and visual symbols put in place.
  The sorrow that envelops our people in our society is quietly hidden away by most and yet splattered via cyberspace with millions of 'likes' and 'comments' that console the soul for as long as it takes to click this action.  YET.....a neighbour, not connected, knows nothing of the house next door, and what threatens to swallow up the family there.
  My day is bright, but the darkness that surrounds so many I know smogs out the joy.  I push back.  I push these dark clouds to the sides shouting in silent prayers--"no, no I will enjoy..I will enjoy.  For, we have paid our price already, we are paying our price.  We pay a high price daily, and the joy we feel, it's ours to have...."
 I wonder too--did you?  Did you too agonize in the glory and the lovely while he, while we suffered immeasurably?  Is this how life plays it's games?
 Oh feelings and words can write sonnets and plays, songs and speeches--they seem to have no way of slowing down until they are put to paper.
 Endless nights, days, weeks we saw the same walls, peeling, sick places of the unfair and the unpredictable.  The sunny days I longed to escape.  The winter days, I missed home.  The birthday, the holidays, the days the world went on...and we did not.
 Our minds and hearts are forever changed, forever grateful for every health filled day, because no black is worn, no signs are hanging, we troop on and enjoy the glorious days for each of you continued on, and we are too.
 We have no choice but to live, live hiding the black, and smiling on, because each day is a day to live--live knowing there is great love, and great suffering running hand in hand.

Monday, July 15, 2013

writer's block, is writer's fear?

I'm looking at you, and your my same baby boy.
only...your not a baby anymore.
Your eyes, your eyes tell a story, story of the eyes that have seen more than any five year old should .
Eyes red rimmed, eyes blackened, eyes afraid, eyes sick, eyes swollen, keep your eyes on me, my boy, and I'll keep them focused for you.
Your lips, your lips that took only the best foods, your mama's milk, lips that swelled beyond recognition,  lips lined with mouth sores, lips that voice words you would never use, were you not drug induced, lips that open up each night so trusting, to take your chemotherapy, your many many drugs.  My heart sinks each time you ingest these poisons that save your life, as we administer these drugs, our worlds hold still for a moment, and all our fears creep in...and we carry on with praise for you and your bravery.
Oh those legs, those boyish legs that have lost their chubby youth...those legs that threaten to bruise and cause you pain to walk.  I kiss those legs, and their ouchy spots, I rub those legs when you can't move them, I lift those legs for you when you can't.  They will grow long, and lean...to walk..to walk away from from cancer, from pain, from this childhood full of obstacles and illness.
I stroke that hair.  That curly, sweaty, unruly hair chased away by chemos, and yet coming back with a vengeance to show us who's boss.  Hair that fell out in the wind, falling like hope and tears.  I kiss your hair as you sleep...remember your bald, white, sick little head.  I kiss you and hold onto all the optimism of a bright future for you.
I rub that tummy, swollen with enlarged spleen and liver.  I rub that tummy as it aches from the gorging during monthly steroids, as it has a terrible time for years with aches and cramps daily.  I keep a watchful eye on your tummy, for spots, for petecia, for every freckle threatens to be something less innocent..
My God, my God,  your hands, your beautiful hands and arms.  Ravished, poked, taped up, splinted, thousands of times over, with no choice in the matter.  the hands with dimples should know no pain, no IV's no bandaids, no cancer.
Your chest, heart racing..medications for high blood pressure at the age of four, it's criminal.  Scars up one side and down the other.  Port a caths, foreign tubes and metal in my boy's chest, his heart, his neck.
Oh the back, bruised and poked, injected 27 times over with chemos that run to the brain, a back so tender and I want to take him and run with each spinal tap..but we pursue.  What choice is there?
And I look, and I pray, and I hold and I hold in my silent scream, like all the other mothers who are doing this too.
Everyone knows all we can be is thankful, and I am, but ..
my boy, my boy did not need this.
I cry out to Mary, "Mary, Mary, your son--he suffered so much.  Where does a mother shelf her grief--this house is too full for this sorrow, we can not contain it here."
I lie my head down, listen to his heartbeat, smell his sweet hair, and God fills my empty spaces with hope.  A hope I can't quite reach, but I think if I just let it wash in, and be patient, it will come, and the big holes will be filled in.
Healing my boy, and healing the broken mother's heart.
A boy needs lots of care, a body is fragile, so I succumb to the situation, and rock my boy, his body in my arms.  I let HIM hold us both, and we release the pain and trade it in for a hope so essential, it can heal all these wounds.

Monday, May 13, 2013

SO, I'm the mom...

SO, I'm the mom who's got no make up on today and is tired and sick and just called my hubby to talk to a grown up, while yelling out the patio door to the 4 of 5 kids "trampolining" --"GET OFF THERE AND GET YOURSELVES ON TIME OUT! YOU ARE THE WORST KIDS IN TOWN!!"
SO, I'm the mom who made THREE batches of Kraft dinner today for kids who wouldn't even eat  it after it was made--I'm pretty sure that this is illegal, that  much Kraft dinner can't even be considered compost able, can it?? Will strange weeds grow in the garden, and carrots with eyes???
SO, I'm the mom who moves furniture around the living room daily, to re create a new space, in the old space, without buying anything new, but feeling like things have changed...but they really have not.
SO, I'm the mom who checks her message a bazillion times a day, wondering who else is checking theirs as often, geez, don't they have better things to do?
SO, I'm the mom who is relieved Mother's day is over, so I can have a day where I don't have extraordinarily high expectations followed by plummeting lows.

I am a lot of other things, both good and not so good.  There is home made chicken soup for tonight, though they will not want to eat it.  There is homeschooling done for today, though they did not enjoy it.   There is laundry done, and things tidied up, children fed, and babies napped, there are prayers offered and prayers said and at the end of the day, it will have been a regular sort of day.  A day I can add to the others and they all look so good and picture perfectly scrapbooky in the future, as the then are all but passed...I do actually like today, and these days.  But like most things, when we are so close ...it's hard to see the purpose and the good.

SO, I'm the mom who's son has cancer, and I'm the mom who's baby crawls to her, and I'm the mom who's toddler needs a squeezy hug, and I'm the mom who's shy son needs encouragement, and I'm the mom who's growing daughter needs a good example.  SO, I'm the lucky mom who's just yelled out the patio door, who's got things falling apart around her, but who's got all the things she needs, if she can see past the chaos and focus on the treasures that gleam.
SO, I'm the mom who needs to 'can it', and get things back on track, apologize for my harsh words, and tell them how lucky I am to be "the mom."  ....BUT..
"IF EVER I CATCH YOU DOIN' THAT AGAIN, YOU'LL SERIOUSLY BE ON TIME OUT AGAIN....."
Cause...."I'm the mom."



Wednesday, May 8, 2013

farmers and God....

Last night I was out at Walmart, drowning my sorrows in aisles of cheap and crappy goods, searching for bug spray, oh the life I lead..is so romantic. On my way home, the fields were dusty and lit up with foggy dirt and smelly manure.  The lights were blinding, and the farmers in the fields brought tears to my eyes.  They seem so alone and lonely out there.  Working away in the dark, late, while mostly everyone is home, snug at home in bed, or at home at least.  The farmers plowing the way and planing the way and sowing and later reaping.  The bright lights made me feel closer to God somehow.  The thought that they were out there doing something so natural, so wholesome, so normal.  The lights leading them in the dark dark fields that seem so vast and shapeless.  The focus on one thing--life, and growth.
I picked the long long long grass roots out of my garden every day and every day, they seem to be back.  I see every root as a cancerous growth, taking over my flower bed, weaseling it's way deeper deeper deeper into my soil, into the life of what should be mine, should be pure..should be beautiful flowers.  My life has cancer in the flower beds, and in every lurking corner...some dark fear waits to trap me like a spider and a fly who isn't looking.

Now that the CN cycle is done, I feel a sense of emptiness I knew would come.  When I'm actively doing something to make the situation better of my boys cancer, I feel like I can conquer ANYthing.  When life slows down to the "normal" hum drum, of 5 sick kids with colds, school work, and yard work, and house work..and work work..it seems less ...well less optimistic..and more...worrisome.

My boy is coughing and looking kind of sick, as he's fighting a cold, and I worry.  I know worrying does me no good, so I keep busy.  Keeping busy doesn't allow me to think..but that's a lie, the thoughts are still there..hiding.  I think I'll let them out soon, to say "boo," but then I'll be the one seeking and not hiding, and I'll seek so well, I'll surely win. I can win, and Luke can win.

There is MUCH to be thankful for.  I am feeling blessed to have mother's day around the corner, and being a mother to 5 spirited, smart, and caring children, is more than anyone could ask for..and more than many want, lol.  I feel like spring and summer are bringing about healthy play and changes in my family, and the fresh air is shaking out our dusty ways and stirring up our hearts and souls.  Our new church is rising up daily as the construction workers build and build, cuss and build.  Unholy words flung out with every hammer swing makes me laugh, and not judge, but it's ironic how a beautiful house for God is being built with so many four letter words flying out of it.  I see the changes of buds and flower and the ever noisy birds and biting bugs.  God and the farmers are out and about, making light, casting seeds and rain and sun will make it all grow, and I'll watch and admire the handy work and be blessed by the growth around me. Not the cancerous weeds and pesky dark worries, but the truly good one's from the Lord above.

Friday, April 26, 2013

Luke's video

https://www.youtube.com/watch?feature=player_embedded&v=jxCs7GrUA3k


Just adding Luke's video I made for his one year mark last Oct/ 2012.  Please share and raise awareness for Pediatric cancer.  

Tuesday, April 23, 2013

the times they are a changin'

I haven't been able to write in a while.  I mean, there is always time to write, especially because I love to write...having 5 kids doesn't keep me from writing, washing maybe, but not writing.  I've just had nothing to say.  Of course, nothing to say, means, I've had a lot to say, and not sure where to start, so instead, I festered over it. So today is the perfect day to sit down and write.  See, the baby has the flu,day 8?? and is vomiting, the cancer kid is on day 5 of steroids and is screaming at everyone..the kids are sliding down the slide onto one another, the house is a mess, the dinner is not made, and I'm 2 nights no sleep! It's perfect! 
I had a heavy heart today, as I was chatting (on line, who has real people anymore) with a fellow oncology mommy.  Her daughter is in "good shape" after her cancer treatment, but she has a very rare disorder caused by the cancer, lucky her, eh.  It has been weighing on my mind and heart as this family seeks help where no help has much ever been found...and I found myself looking back through her facebook photos.  I never met her family before cancer.  I look back and see a young, beautiful happy family.  They still are..and another baby is there (3)..but the sadness that now persists and then un knowns they live with..it's just cruel.
I have been thinking how our lives here have been so changed since the day of diagnosis.  The innocence lost, the carefree days gone, and there is this sense of foreboding that lingers like deep dark gloom in the background.  I am trying to sweeten the smell, and uplift the mood, and paint every cloud with that perky silver lining.  But it is just not the same.  We are not the same family. I found a picture of the week before his DX:
It brings back so much.  The "before" pictures haunt and frighten me of the time when so much was taken away.  The woes and worries I had, were so different than those I have now.  The kids I knew had scraped knees, and a few issues, but they didn't die.  They didn't suffer for months, year..they didn't wonder...if....

Today here we are:
We're still a family, in fact, we are closer, and more loving, and more helpful, and more aware of the preciousness of it all.  Of life, of living, of fun, of it all.  I know the ache will be for a greater good.  I know the ache wont stay so painful.  It can and will be used for a better cause.  I know my boy has not lost his fight, and for this I am beyond grateful.  I am ecstatic.  But it does make you wonder....

How can a normal family be "that" family so quickly.  How can that family heal.  How can that family help others.  How can that family deal with what they have on their plate and not always grumble and whine and feel sorry for themselves or jealous of others. 
When I find out, I'll let you know.  In the mean time, I do my best.  We pray hard for the other families whose stories touch us.  We pray hard for Luke.  We ask for complete healing, and we try and get by. 

Better days are yet to come....




  • John 14:27

    Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.


Friday, April 12, 2013

Blessed

Sitting here feeling BLESSED!
Luke first off is doing pretty good.  His tummy has been upset a lot, and he's always feeling a bit sick there, not sure what's up with that, but it's a lot of bathroom trips for him. Ug.  He's amazing me anyway with his strength and happiness and spirit.  He's really the kind of kid that is strong strong willed, so anything that makes him mad, or upset, gets him going...but I think that is what makes him a great fighter.  He's growing up, and I am thankful for this.  I think we'll always be battling with things for and with Luke, but that's our job, so we will have to face it bravely.

I emailed the coordinators for the Toby Mac concert we're going to in the first week of May, and they gave us "meet and greet" passes as I requested!  He's a Christian singer who sings really fun and happy songs that Luke loves and loved to listen to during some pretty hard treatment days.  I would play him on my phone on youtube for Lukey.  He's really excited to meet him!  He deserves it!

We managed to finish collecting and tagging and organizing the hats for our 1000 Hats for cancer campaign.  We got a whopping 1103 hats from everybody!  I can NOT wait to get them shipped off down to Ecuador soon.  I hope the sweeties there will be happy to have some gifts from us up here, and I hope a little smile comes to their faces when they know we love them and care about their well being.

That's the scoop.  Not too many outings for Lukey, mostly just staying home and playing with friends when we can. 

What's to come come spring?  More hospital visits and more chemo, more of the same..and more rest for Luke to recover.  He is also attending camp Trillium at the end of May for a family camp weekend, where Rebekah will celebrate her first birthday! 

Monday, April 8, 2013

little boys and warriors

Today I see a warrior out my window.  He's got a big world around him, and lots of soldiers with him.  I see a little boy with a big fight in him.  I see a little boy who has always been my "strong willed child."  I see a little boy who's got a lot of man in him.  I see a little boy who wants to be a little boy, but who's been given the role of a hero.  I see a little boy who has lost a lot of innocence, but who has gained a lot of courage and strength.  I see Luke.  I thank God that he's so feisty, even though it drives me crazy.  I know that he has great things to do, amazing things to yet accomplish.  I pray that he'll be healed entirely, and that he will grow up to be a man.  A man of great integrity and a man of strong faith and strong convictions.  A man who can forgive and not judge, a man who can love deeply and play hard.  A man who can find happiness and joy in the small things, even when the world crumbles around him.  A man who can take his "bad luck" and use it for good.  I see Luke.
When life is so confusing, I think it's important to grab hold of what matters.  To live passionately for what you believe in and to do what you're called to do.  To love, to serve, to give, to accept, to run, to rest, to seek and to learn.  I see warriors all around me.  They don't all have the markings we'd expect to see, not on the outside, but everyone is fighting a battle of some sort.

He may have hair, he may not be living at the hospital, he may be playing outside, he may be wearing normal clothes..but that doesn't mean the fight is done for him.  He takes his chemos daily, and more..he takes his steroids.  He wears a mask around large crowds, he runs out of energy when out playing with friends.  He has tummy aches, and uses the bathroom WAY more often than any kid should.  He has aches and pains and  cravings and frustrations.  Cancer wreaks havoc and threatens to try and rob us.  We are fighting.  We are soldiers standing shoulder to shoulder.  Hold your head up Luke, and hold up your weapons, and we are fighting this battle with you always.  xo Mommy

Ephesians 6:10-18

New International Version (NIV)

The Armor of God

10 Finally, be strong in the Lord and in his mighty power. 11 Put on the full armor of God, so that you can take your stand against the devil’s schemes. 12 For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. 13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God.
18 And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.


Friday, April 5, 2013

Friday....

Today was a sunny day, even though we woke up to a winter wonderland of April snow, the sun fought the clouds, and won victoriously! Yeah sun!
My kids had a busy homeschool day, where they tried their hardest to avoid school, but got it done none the less...I told them the new morning rule.  If you don't get dressed and start school by 9, no computer...after all these years of telling them, now they can tell themselves and be responsible.  We'll see what happens by 9 am come Monday morning!

Luke had a cranky/happy day.  I guess that's normal.  He had lots of attention as his Nan came and baby sat for an hour and a bit, and he got lots of computer time, and even played outside a bit.  I'm working on trying to hold and cuddle him more, as he wants a lot of snuggle time, after all, who doesn't?

The yard was full of kids this afternoon.  Running around the yard and fields that surround our house.  A yard full of screaming, and wet feet, battles and adventures.  It was pure joy to see them getting it out of their systems with the neighbourhood kids.  It was great to see them run like the wind and create new games, and get into outdoor mischief, which does NOT mess up the indoors! 

I feel really lucky that we bought this house.  It seems to be the perfect location for us.  We're in "town" but it's so country, that our whole back yard is surrounded by miles of farm fields.  We skii and play in the fields all winter, and spring and fall they are romping and stomping grounds for the kids and I.  Come summer, they're out of bounds as they are planted, and sprayed..yuck.  God certainly knew this old house and wonderful yard would be treasures for us. 

There are a lot of heavy thoughts weighing down my mind and heart, but I'm trying to push them away and fill my mind with happy thoughts and good things.  I'm angry and jealous, unforgiving and worried.  I'm afraid and hurt and disappointed. I'm petty and impatient and tired.  Very very very tired.  But in all this, I'll try and be more gentle with myself, to allow myself to get through the feelings and let them go...and not bottle them up and dwell.  Time heals all wounds...right?  It's one day at a time, and one foot in front of the other.

There are no good analogies or revelations in this post, and there are no words of "wisdom."  There are dishes to do, babies to console, laundry to fold, and snuggles to give!  It's a regular Friday night, and the Son shines on!


Thursday, April 4, 2013

tired.....but well

Luke had a great day at CHEO today, lots of people to play with, lots of hugs, and lots of love going around!  I was really proud of him.  He was happy!  I mean, except for the blood work part...
He teased Molly Penny, and put her on time out, he saw Brenda, hugged Pam and Anna.  He played with Robert and Jeff....and the list goes on!  I was thrilled to see Luke having a great time.  It made me kind of sad to think how sheltered he's had to be, considering how much he LOVES to be around people.  I think it's time to carefully get him out there more.  He's lonely for fun! 
His counts came back (after a bit of a confusion with the staff at CHEO--see Caringbridge post) quite high.  He'll probably be given more chemo to keep his counts at a lower level.  I felt kind of guilty as he waltzed around the MDU today, looking so good, and so healthy..like he should still be looking really sick and bad...
We are blessed that he's doing so well.  I don't take this for granted ..at all, for an instant.....

I know that we are in Maintenance now, and I think I kind of forgot to enjoy it, as I'm still "coming down" from the previous year+ of the heavy duty chemos, and inpatients etc.  I know the shock of it all will come more when it's all done, in 2015...slowly, we are finding our way.  I realize how fortunate Luke has been to not have been an inpatient since last May.  He's managed to avoid fevers and sickness, even when he was 0.0 for many many days and weeks, a true miracle!  He's managed to still avoid all the colds and flues that have circulated around this house.  More miracles.  He's doing so well.  I tell myself, "the other shoe wont drop, it wont drop..it wont."   I miss kneeling down on the pew at our old church, as our new one is not yet built..I need that quiet with the candles and the time to feel my prayers, and not just say them...I miss a lot of stuff, but I am realizing God's larger better plan.  We have become SO tight and close, the 7 of us.  The situation is hard, has been hard, continues to be hard...but we are sticking by one another.  There are days when everything is chaos and we still get through.  We celebrate quietly with one another, and live noisily with one another.  We are a family still teaching, still working, still cooking, still cleaning, still laughing, still crying, still struggling, and still praying.  This wont change, but the depth in which we do it, has changed.

I keep in touch with many many other childhood oncology families with much harder paths to forge...I know we are fortunate...I lie in bed and pray for so many kids and their families...I wish at times that my kid's "friends" were just normal kids, who's biggest issues were not the potential to relapse and more...and we do have friends like this..but we also have a lot of friends who are battling, and we are forever fighting along side them!!!  I can't even bring myself to tell Luke when his buddies are not doing well, he knows...too much.  He understands too much, for a five year old.

I am bringing Luke and all the kids to Gabriel's First Communion celebration this weekend, and am so excited.  This is a big deal for us.  It means a lot to celebrate it as a family, and I eagerly await Luke's turn when he turns 8...good things are to come, GREAT things in fact!

Tuesday, April 2, 2013

double posting..never a good sign

Some say ...."out with the old, in with the new."  Some don't.  I say, keep hold of the old and nostalgic relics and forget the new, as they are easily replicable.  At least this was the good advice of my mom, and I agree...
I go on cleaning rampages.  I can not handle cancer, or stress, anxieties, life, situations, and I clean.  I put items in bags, bags upon bags.  Big black garbage bags.  Bags full of toys, clothes, extra knick knacks, pots, cups, books...you name, it's in there.  I do this a lot.  I'm not a shop-a-holic, and I definitely do NOT have spare money to buy stuff to just turn around and give it away.  So, as you shake your head in disbelief and wonder, where does one accumulate so much stuff, and give it away?  Well, we get a lot given to us, and I do go to stores, and I do just sort of go through our things a lot and give them away.  We all have baggage.  We have our minds and hearts and souls (and homes) full.  I can only allow so much to come in, before something has to go out.  This is my thing, my style, my quirk (of many).  I am not a huge gifty person, that is NOT my love language (if you've read the book--a great book..The 5 love languages).  I do appreciate gifts, and am so thankful for them, but I am not attached...to much of them...well, except a few shiny ones from my hubby...they are NOT in the big black garbage bags.
Why am I writing about all this...what is my problem..well, where should I begin.  This morning, I found a birthday card lying around.  An older card that has been circulating the house for a while never finding it's special "keepsake box"home.  FINALLY I picked it up and read it.  I figured, it will find it's box, once I see who it was given to.  With five kids, you need organization skills to survive, right?  The card was not inscribed to anyone, but I think it was meant for Jacob, as it had a #2 on it, and he just turned 3 on Friday, so this card has been out of a home for a year.  What caught my attention, was who it was from.  It was signed, from Grandpa Mike and Mary.  It made me stop, and just stare.  I wanted to cry, I tried, but ...still ...nothing.  I put the card in Jacob's box where it will sit and be a memory.  A memory of their grandpa gone way too soon.  Cancer is the worst enemy in our lives these days.  The day continued, as days tend to do, and the chaos and joy danced together in what we like to call "family."  There were many Alexander moments (see previous post of ramblings) and yet no one moved to Australia...yet
So today I learned to hold onto what matters, a small card with some meaningful words, words and memories that can not be redone, only re membered.  I let the bags fill with useless things that wont be missed, and keep my home filled with small simple reminders of what matters.  What matters is my chaos and joy, my family.  I can not just bag up all my woes and send them off to donation, but I can cut out some of the clutter that fogs my mind and trips up my feet and keeps me from seeing clearly what lies ahead of me. 

I say keep your faith strong, and keep your loved ones close.  Keep your hope pilot light lit, and keep your path clear.

It is with a heavy heart that tonight we learned that a friend, a child, a fellow oncology patient has relapsed.  There I sit, and the tears will not come.  Trying to let myself "feel" while caring for 5 young kids, is really impossible.  I ache, and I feel, but I can't let it happen, so I write.  I write to cry, I write to scream and I write to reach out. 

I wonder how kids can endure so much, and the treatments fail.  I am angry that the funding for children's cancer, is what...3-4 %?? I am furious.  What can I expect for Luke?  How can I remain so hopeful when all around us, kids are failed by the options in treatment,while being tortured by them at the same time.  It's nauseating.  I turn to my faith and wait for the tears.
Jeremiah 29:11-12 (New International Version)
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you.








It's been a ......


Woke up determined to be HAPPY!  There is snow in April, I pulled my back leaning over the sink, the baby is fussy, and I punished the kids from all screen time today...but it will NOT be a "terrible, horrible, no good, very bad day." (That's from one of our favourite books, Alexander and the terrible, horrible, no good, very bad day) No, because I woke up and decided it will be glorious, and glorious it shall be!

Small and beautiful victories can show themselves, and will...It's sunny despite the snow, my back will be fine, the baby will perk up, and there will be lots of games and schooling done today, and maybe the tuned out kids, will take naps instead of resting on the computer time.

I have a 5year old boy pretending to read a novel, pushing his little heavy and sleepy body into me as I type, full of life and love, full of hope and full of promise.  He's my sunshine today, despite the cold. I have a blonde haired fire cracker scooting around the house, undoing every tidy thing, and creating fun and messy areas to play in.  I have a juicy bundle of baby learning to stand for a second or two at a time, and pointing with delight at everything...the wonder that surrounds babies is amazing, as to them, everything is new and fresh...ready to be discovered.
I have a big girl who tops up her days with re reading Lord of the Rings, creating new crafts, biking around town, and helping me out so much with the little ones.  I have a quiet soulful brown eyed charmer, with a ferocious temper that bubbles up and yet he's the baby's muse all at once. 
I have a husband hard at work, keeping us afloat and more than that, loving us and caring for us, and coming home to spend time with his family because he wants to, not because he has to....I am blessed.
It is a good day, and at that, I don't think I'll move to Australia.

Monday, April 1, 2013

Easter ..and now what?

I feel like I should have some great post to write a post, but I don't.  I woke up feeling ...un inspired, so there it is.  I wonder so many times, if reading all the Facebook posts really is healthy.  It pretty much assures me that (with extreme exaggeration--and I had to google how to spell exaggeration--) that EVERYone in the whole wide world lives a perfectly happy, sunny,and vacationy life!  It's all so perfect, and "friends" are SUCH good friends, and all families are perfect, and all couples are happy, and no kids are a disaster..lol!  It's just me being silly..but at times, I long, big time for the days before Facebook, and my unhealthy addiction to peeking into other peoples lives..and fake-booking my way through my own...oh ya, Easter is the topic....

We had Easter, it wasn't good, it wasn't bad, it was okay.  I made it to church with my mom, and 3 kids, which is pretty successful for us.  I didn't bring Gabriel as he has been unwell a lot and picks up every flu from there..and Luke...I didn't want to take any chances. (We were also very blessed to have friends come by for a visit on Saturday, which TOTALLY perked up our spirits).  I missed my brother a lot on Easter, but feel privileged to spend holidays with my mom and dad!

We had a low key weekend with some yummy treats and some healthy foods, and did NOT go over board at all with the goodies...some candies from the bulk barn, and hid some eggs.  We've got too many kids to buy the big chocolate bunnies anymore!  

Luke  has been doing okay--he's got what another momcologist has called, the King-Tut syndrome...where he thinks, and acts like he's the MOST important person in the family.  He expects everything instantly, and acts quite spoiled, as I do believe we've spoiled him along the way of his cancer journey.  Poor guy.  He's got a lot to learn about re-integrating into the family and not being the sick kid. It could be worse, eh!

So, here is Monday, and I pray for silver linings on this wet spring day!

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

HOPE

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
v.intr.
1. To wish for something with expectation of its fulfillment.
2. Archaic To have confidence; trust.
v.tr.
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.
n.
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:

p.66
"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 ...life 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, forgotten..my 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 fits....it'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.