Wednesday, May 6, 2015

Each day that has passed, each and every day since February the 13, a Friday, no less...has been cherished.  I don't see this as the start of a new journey yet, nor do I really see it as the continuation of the past.  I guess it's a new start, but it's really feeling like 'borrowed time' or 'extra time.'
The last dose of chemotherapy for Luke as a day to celebrate.  A day to congratulate him on being so brave, so strong, so tough, so well.  It was a day to celebrate that this cancer, this Leukemia, didn't take his life.  It was a day to celebrate no more setting timers for nightly chemo, no more IV infusions, no more lumbar punctures, barfing, headaches, leg pains, steroids, tummy meds, overnights, fear, anguish, isolation, disease.  It was much to celebrate. 

......At the back of the party, there is Fear. Fear has a way of showing up at all events, especially those he's not invited to.  He pours poison in the punch bowl, making stomachs turn, and no one know how to feel better.  Then arrived Anger, he's wretched.  He makes you feel so mad, and that makes you feel guilty, it's like he's poking and poking at you.  You tell him to back off, and to leave, you don't need anger, it's not right, you shouldn't have him, but he's relentless.  Exhaustion just lingers around.  He's not as obvious as the others, but he's equally potent, as he knocks you off your feet, in an endless, sleepless cycle of wakefulness.  Exhaustion is the one who makes me embarrassed to be in public, he leaves me with physical marks, puffy eyes and droopy face.  I hate him.  Just when I feel I've beat him, he creeps into my mind, and doesn't let up in the night, he brings nightmares over and over.  Dreams that feel so real.  Dreams that I'm getting the spinal taps full of chemo.  Dreams that I'm dying.  Waking up sweat covered and more exhausted than ever.  He's a nemesis to many.  Sadness is pathetic.  He hangs around with Self Pity.  They like to re play over and over the past years.  They seem to enjoy watching me squirm, letting the tears fall only in inappropriate times.  I kick them hard and fast away, like rats on an open wound.  They do me little good.  Sadness I'll tolerate, here and there, when he arrives with Hope, but when he arrives with Self Pity, it's forget-it.I almost forgot my other enemy.  Anxiety.  He's the one my little pills are used to shoo away.  He makes my hands shake, and my heart pound.  He makes simple situations feel insurmountable.  He stops people in their tracks, and freezes them like deer in the headlights.  Anxiety is paralyzing, but he's probably not going to win.(He hangs around with Depression, but he is AKA as Sadness, cheeky bugger).

There have been a couple months now, where the treatments are done.  I do my stuff.  I keep busy.  I'm a mother of five, homeschooling, I run daily, I cook, I clean, boy do I CLEAN!   The demons they try and push me down, and a lot of days, and weeks, they do.  I find myself hurting over the years that Luke was so sick, the years he was still in treatment, the years we 'lost' to cancer, but still had to live to the fullest. 

I don't know who I am for certain, or who we are as a family.  I know for sure we are not anywhere near who or what we were prior to diagnosis.  I think we have become more sensitive, more honest, more cautious, more humbled, more scattered, more thankful, more protective.  I think we have let go of a lot of the disappointments, the hurts, but some still sting like fresh wounds ripped open.  We are slower to speak, to act, to say...we are watchful.  We are watchful for people who may or may not be there if there is a round two.  We are watchful for bruising, for spots, for fevers.  We are living each day, as if it is a bonus.  A bonus few people have a chance to ever know.  Every day is a gift.  How corny.  But, it is.  My boy is here, we face challenges of many sorts, but each day I live in the day.  I know the past and the terror cancer brought, I don't pretend to predict the future, but I have today.  Many don't. 

My friends are here, so I have to run.. Here comes Faith.  She's who led me through the darkest days, and continues to stand by me.  She reminds me daily of my God, my Jesus, and the truth in the Bible.  Next comes Love.  She's amazing.  She loves even when it's almost impossible.  Grace is one I truly can not hold a candle to.  She's offering up herself to all, and she's so forgiving.  I admire Grace, and hope to be like her as time goes on.  Lastly, here is HOPE.  Hope is my best friend.  She never ever gives up.  She is there for the religious, and the non religious alike.  She is the kind of friend who can always find a silver lining, and the meaning in tough times.  She allows us to persevere through loneliness, heartache, failures, depression, anxiety, fear, anger, exhaustion, sadness, self pity.  Hope is what we live for.



Wednesday, December 10, 2014

Robbed....

I spend so much time analyzing my emotions, denying then, feeling guilty for them, suppressing them, trying to change them, justifying them, hiding them, admitting them...it's exhausting.  Why do we do this to ourselves?  Why can't we just let ourselves be sad. Plain old sad.  Or happy, exceedingly happy.  It's like there has to be a hashtag associated with all our thoughts, our emotions, ourselves..sometimes things just stand alone..and sometimes they don't, but we can't always put a voice to them.  Sometimes the voice we DO put them, aren't good voices..they are negative, hurtful, accusatory.
Some times I think I don't have the right to complain.  I say, well, my son hasn't lost a limb.  He hasn't relapsed.  He hasn't died...he isn't brain damaged, he isn't lost to me, he isn't in radiation, he isn't away from home...

Some times I think I have the right to complain.  I say, well, your kid isn't suffering through steroids every month.  Your kid isn't getting poked and prodded, hospitalized. Your kid doesn't have issues like mine, doesn't have bowel problems daily, friends who die. You don't wake your child every single night for years to give them oral chemo.  Your family hasn't lost friends, family.  If you miss church, it's because you want the time off, not because your afraid of what your kid will get there, or how insane he'll act there, or is too sick to attend.  Your family can do what they want, when they want, no worries about germs, no worries about play dates..no social issues, as the cancer family...

Robbed.  I think families who have a child with cancer often feel robbed.  Any major illness I'm sure.  Robbed of trust.  Robbed of innocence.  Robbed of time, of support, of help, of simple days.  Robbed of the mundane.  We are robbed of money, of health, of purity of childhood.  Robbed of that time..that time that was 'supposed to be.'  The ages of 4, were robbed to major life threatening treatments.  The year of 5. His year of 6. Now, his year of 7.  I will never have him again as a four year old boy.  That time, it's gone. It was sick years.  It was scary, hard, awful years.
What happens to robbed families?  They have to rebuild.  They have to find new eyes to see through.  Not just to GET THROUGH the hard times, the chemos, the pokes, the steroids, but to actually LIVE through them, as real life.  We can't just count down, though we do...because that would mean those years, are lost for ever..they were hard, but they were/are ours.  They were what we had, they can't be fixed, but they can be accepted.


I am dreading February.  Not because he'll finally be 'done treatment' but because I dread the reaction of others and myself...I don't know if I'll be happier.  I feel I should be happier.  I don't know if I'll be relieved.  I think I'll actually be more nervous.  I don't know if I'll be grateful.  I think I may be the angriest yet.  Will we feel like, 'wow, we've won, he did it, we did it?' When Jason and I talk in the dark, in the night, we say such things as....'I can't believe how long it's been, how hard it's been, and when it's over, it wont really be...over...'

You may think that negative, or pessimistic, or  depressing, or fatalistic.  We just think it's how we feel.
I'm ready to steal something back.  I'm ready to rob.  I'm stealing back my voice, my life, my health, my family.  I'm stealing back my son, my beliefs, my courage, my strength.  I'm stealing back my independence, my future, my past, my hope.  We have all been robbed, have we not?  We all have choices of what to do with these infractions that are put and placed upon us.  Pity is good for a moment, and then it's time to look around.  I think that this journey, this robbing hard time, has tried to hold us under the water...and we battle daily, to resurface.  We will always resurface.  We will not be drowned out, held down, or sunk.

Christmas time is a hard time of year.  I admit, I'm a pretty big baby this time of year.  I am not big on the gifts, the baking, the decorating, the hype, it makes me nervous, poor, and stressed...I'd rather just eat a nice meal, and go to church..but our world doesn't work that way.  I will be spending Christmas eve, the day, the 24th, at the hospital with Luke, getting chemo, starting steroids, then coming home to take two more chemos.  I think this will keep everything in perspective.  God means us no harm, but he does know, what will make us think....perhaps we will make it to church, if Luke feels good enough, but perhaps not...the week will be filled with presents and hype and a little 7 year old boy who will be very distraught on steroids.  I will not be robbed.  I will not let the situation that I can't control, take from me, what I can control.  My joy is mine.  My family is mine.  My Jesus is mine. And my attitude is mine.

#gottalettheemotionsbewhattheybeandlivelifetothefullestbooya  : )

hashtag that , baby





Thursday, November 13, 2014

perfection in the mess--my life.

Today was a PERFECT DAY. You, know the kind of day, where you feel like you've been given second, third, one millionth chances?!! It was perfect counts and blood work. Luke was asked to be seen by his/our fav. doctor, just to SEE him, not to check him,not to poke, prod, question, worry, just to say hi and get a little Lukey love. Can you imagine??? In a world so busy. Blessed.
Then, I had the utmost privilege to bring sweet Pranay a doggy hat he requested, and he liked it!!!! He went to sleep upstairs, and rumour were, that Lukey Love hats made the recovery room stop and look. Blessed are the little things we do, to love others. We all need and want to be loved, to be special, to be thought of, to be cared for. I always am slightly embarrassed by my lack of true skill and crochet ability when offering kids hats, but my heart is in it, and that's what they feel. I felt like a crochet queen being able to offer a little compassion through the stitches I made for these heroes. ---The staff (Molly Penny, etc.)even said they purposely send my hats to the kids in other hospitals away for transplant!!! I felt honoured!!!

THEN, Luke had a blast with Jeff, uncle Jeff, the volunteer...his friends, and the staff..and I had the chance to deliver a few more goodies to 4 North...up there, I was asked, okay, BEGGED...for more craft bags for the up and downstairs onc. rooms..our church, Trinity Bible Church of Ottawa (Mary Ruth Downs) has previously provided hundreds of craft bags for the kids in the onc. wards. I loved today. Today was not full of sadness..though there is much pain, and worry, and grief, there is much much hope. Little things CAN and do make a difference. We felt loved today, we felt worthy, we felt wanted, needed, appreciated and respected. ...and on the way home, played the amazing song 'Life is beautiful'---if this is borrowed time, we'll take it. If the other shoe drops, we'll enjoy a one footed hop..if it's not going to last..it's great now..cause you never know..and time is precious.--

I almost forgot!!!!!!!!!!!!!!!!!!!! The staff member I prayed for for the last two weeks, who was having very rough personal issues..and confided in me..I had had the opportunity to share Christ with her, and she knew nothing about God, his love, or the church..she went to church!!!! I gave her all the churches that she was interested in trying, according to her background, and she and her sister went! I have a feeling this stupid cancer world is NOT going to entirely crack me. Speak up, act in love, admit faults, love on others..and even when it all crumbles..the shattered pieces still have beauty.

Thursday, October 16, 2014

don't give a care about a writing challege.....

Today I am sad, angry, tired, and exhausted.  I shook and jolted in my bed last night, trying to settle down to sleep, not even knowing I was nervous for a silly old regular blood work day.  It's nothing. Nothing new, nothing alarming, nothing scary.  It's just routine blood work for my kid with cancer.  Holy Frig, ya, with cancer.  I say it like, my kid with brown hair, or my kid with freckles.  It's all too common, and all too normal, and all too familiar, and all too horrible.

I didn't know that my mind and body were so affected, by going to the pediatiric oncology ward..and not for chemo..I mean. Hate that.  Makes me feel like I'm losing control, and I need to be in control.  I'm the mom of five kids who are depending on me to be well fed.  Fed with good foods, fed emotionally, spiritually, fed educationally, fed in all that they are and have.  I'm the one in charge most of the time! I need to keep my cool, not shake like a bloody leaf while semi conscious late at night.  Wine, Melatonin, what will work tonight...


Today we had blood work.  Luke's counts are 0.6, .1 above being neutropenic, not super...

I was informed via our parent oncology facebook group, that a girl, the same age as my Frannie, (about 12) passed away yesterday.  We have seen them at CHEO over the last years and spent time with them at camp.  She had overcome her first kind of cancer, was well for many years.  The chemotherapies used to cure her, gave her a brain tumour.   I wonder why we are as a family, placed in a group, a society of such ill children, who we grow to love, whose parents we care for, and pray for...what is this torture?  Most families don't have friends who's kids die...on a sadly regular basis.  Yes, I sound boo hoo and morbid, but it's true.  We don't just go into that hospital, close our eyes to those suffering and also living around us, and hope and pray for our kid to make it..and forget the others...NOT at all.  We pray daily, we see them, all the time.  We share an extremely difficult and common bond, a bond of a child with cancer, a life threatening illness..one that has no straight course.  A disease that can do almost any trick in the book..it can be gone, reappear, appear out of no where, it can be hiding, it can be in any and every part of the body, it can be cured, healed, re occur, it can cause every kind of damage and can sneak around and be beaten, only to have the chemotherapy used to beat it..come back and kill.  It's never, ever, ever over.  And it's never, ever, ever, done.

I am sounding pessimistic, and fatalistic, but I am being honest and real.  We were not called to another country as missionaries, and followed that call.  NO.  We were not called to preach, to minister, to share, to speak. NO.  We found ourselves, not called, but enveloped in sad and scary world of bald heads, barf bowls, IV lines, surgeries, disease, hope, and lost-ness.  We found ourselves in a world of children, suffering, with cancer.  We are here.  We meet a lot of children over the three years of traveling to and from the hospital.  A lot of these kids, they don't survive.  A little piece of  what was once me, before Luke's dx, dies too with each blow...

You maybe think..back off, don't be close to them, don't befriend them all, are you crazy, you can't care about all those sad sad cases..but guess what.  We do.  The instant we hear, meet, or know of a new case, and old case, and ongoing case, we care.  It's in us to all care.  We share hope, we share grief, we share food, money, fundraising, hats, gifts, cards, hospital rooms.  We share the burden, as God intends us to. 

The world is full of hurts and pains, and we are keenly aware of this every day.  I have a lot of friends at this moment, who's children are in very difficult, and bad places in treatment.  It's all consuming.  It's terrifying.  I love these children, I love the parents.  Don't leave the side of the ones you care for, the ones you are related to, the ones who are true friends to you.  Don't let them endure it alone.  There is no telling when it's going to get all better, or go down hill.  We just don't know.

I wish to God, that we never had to enter this sad world.  I try to keep up my funny side, to make jokes, to tease, to go all blingy bling with my new S and Dot jewelery, to find happiness, and to be fun, but it's really hard.  It's lonely, it's scary, and it's our path, a path I don't even want to know exists, let alone walk on, from here on in.


Let yourself enjoy the choices you have, the ones you can and have chosen, because often our mission field is thrust upon us.  We are not trained, we are not prepared, we are not 'able', we are not strong.  Our hearts beat and break daily, and we slowly shrink away into pain and despair.  There is much much hope, and there is much too much suffering.  Make the choices allowed to you count for greatness, and open your eyes to the pain so many face ...especially as I paint you the pictures of families, with kids with cancer.  It's not gold ribbons and hats, it's fear and anxiety, and much loss. Much loss.


"we don't know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words." Romans 8:26--thank you Elise for reminding me of this!

















Tuesday, October 7, 2014

Day 7, 31 day writing challenge

So, it's day 7, and I honestly feel like I've got nothing to say.


Today the rain comes down in straight arrows, straight down rain is amazing and beautiful.  It makes me think the air must be still, for it to come so level.  The rain comes in straight floods, clears up, and out comes the sun.  We sit on the front porch learning alphabets, we shoo away the wasps, eat fishy crackers, and enjoy our mostly rain proof rain cover and shelter.  The air is just cool enough to be be comfortable and fresh, but not cold, and not humid.  It's perfect.  The kids are doing school, and watching movies, the baby is napping, and I managed to get in my 5 k run (treadmill is a life saver).  Tonight dinner is being graciously delivered, and hubby goes to be a Juniour Youth group leader with our eldest.  Perfect.  The house is 'clean' (clean means I did many hours of work, and it's as good as it's gonna get.  Perfect.  The week has no major hospital visits planned, and no major chemo planned.  Perfect.

Nothing is perfect.  The boy is on steroids and screams that he hates me.  Not perfect.  The run I did was great, and full of prayers and beggings to God to heal my friends kids who suffer, and the parents who suffer along side. Not perfect.  The schooling is jumbled, the children are jumbled, the tv on makes me ...uncomfortable...Not perfect.

We can still enjoy the perfectly imperfect.  I still get little cuddles and my sweet four year old running up randomly to tell me 'I love you mama!'  I am blessed to have my home cozy, mine, and full of my kids, safe and sound under one roof.  I see the worlds hurts that at this moment are by passing me slightly to the left and right, and I crouch down, hiding my head, hoping to avoid a few more slung arrows of chaos, of life's burdens.  Phew, got a day of no major crap!

I thank the Lord, that this pulse of steroids is done, and wait for my boy to 'come down.'  I plan out my Stella and Dot order, in great anticipation, and try and figure out exactly what will make me shiny and happy...it's nice to be able to have something new, that doesn't cost us our groceries....I sit still as a nervous woman can, waiting for God to tell me his great wisdom...but the more still I sit, the more anxious I become..I drink the cold coffee, and race around, being anything but still..anything to avoid my thinking-fears that run through my brain--hamsters gone mad on a wheel.....

I ate some chocolate cake, put on some perfume, and nice clothes.  I count down the days to the end of cancer-daily..I wonder if it will feel more like a relief, or a second burden of fears and loneliness.  Will our family lose our identity that we've had no choice but to adopt for over three years?  Will we be relieved, scared, tired, worried, happy, resentful?  I guess, yes, we will.

Today is not that day.  Today we are cozy at home, and that in itself, is perfect.




Monday, October 6, 2014

Day 5/6 of 31 day writing challenge

I didn't want to write yesterday.  I had been away all weekend, and there are a lot of other burdens on my heart, that it didn't feel right to write about me, my problems, my life.  I feel like I have a whole world of hurt going on around me, and there is nothing I can really do, but pray.  I pray in every thing that I do.  I am wondering how things can go smoothly, and flip so quickly.  Mostly, I just wonder why life is so hard for so many.  In the Bible, there is explanation.  There is explanation that because Adam and Eve disobeyed God, we would forever suffer, and you know, we do.  We all suffer in our lives, some more than others.  The thing we need to try to do, or to see, I guess, is that through suffering, we can come to understand how Christ himself suffered.  He was lied to, he was persecuted, he was forsaken, he was lied about, he was tortured, he was mocked, he was killed.  In our suffering, we come closer to the Lord, and we can empathize with others who are in dark dark times in their own lives.

I pray for the hurt to be taken from those I love.  Hurt of sickness, of lies, of mental health, or past and present abuse..I pray for healing, for full healing.

Today, I hope to be more still, to be still and KNOW HE is GOD.  I think the world we live in is so beautiful, so amazing, with so so so much pain at times.  Let me tell you, if you are in a good place, enjoy, lol.  There should be good times!  Appreciate the sun shine, the food, the wealth, or the job, the healthy relationship, or the healthy child..the home you have, the friends who care, the education, the life you have.  There are many many who suffer, and as we live, we learn to find joys, when the the joy is clouded, we need love and compassion..we need others to love us, as he loves us.

Don't forsake those who ache, reach out....reach and love, we can't endure these heavy heavy time alone...and we shouldn't have to.


Day 4 of the 31 day writing challenge

 A little insight into what steroids do..and are...kids with Leukemia are often put on high doses of steroids, Prednisone and Deximethasone during the years of treatments.  These are to help fight off the bad cells.  High high doses are used as chemotherapy.  So it's not like steroids in inhalers or what not, they are strong, and they are nasty.  You can see Luke here with red red cheeks...and that is a side effect.

 Usually after 3 doses (he gets two a day)--he starts to act different.  My other kids are very very much affected by this.  They see him going from normal Luke, to meanie Luke.  He can attack, and hit, and screams a lot.  He paces, and he cries.  He is constantly hungry...it would be me making meals and foods every hour most days...and meals..like chicken legs, and all things salty.  I don't know how many kids ask for a popcorn maker as a main Christmas gift..but that is what he wanted and got last year for Christmas.
 This is Luke just after diagnosis.  He was on a full month of high dose steroids..which left him unable to walk, about 12 lbs heavier than his normal self, sweating, fevered, angry, sad and unrecognizable.  He was very depressed.
 Luke couldn't stand to see himself in pictures. I think he's lovely all the time. xoxoxox
 Jason and Lukey in Movember, 2011...he's come a long long way since then..but still, the monthly doses are extremely difficult.  We have to basically stay home for a 7 day stretch and see how things...go....