Christmas Letter 2018

Merry Christmas 2018 and a Happy New Year!

Photo Credit: Vicky Falk

(More pics to come at some point)

2018 has been an up and down year marked by gratitude for health, growth and celebration.  This year our family has seen movement from the chaos of the last 3 years (ever since the twins were born) towards finding our new rhythm with the ever-changing variable of the kids growing up!  Ryan and I are enjoying celebrating life whenever possible and catching glimpses of our favorite parts from our “old normal” (pre-twins, pre-cancer) in the movement towards our “new normal”.  There is still much uncertainty in our lives.  However, amidst this uncertainty this is certain: our family chooses to be optimistic, hopeful, believing, fun-loving, celebratory, and above we choose to place our trust in Jesus, the very One we celebrate this Christmas season.

The growth in Garrett and Allison from being 2 year olds to becoming 3 year olds has been delightful.  In April our nanny moved on to a new job and our twins transitioned to daycare 4 days a week --- which slowly, but surely has become wonderful for them. (This allows adequate rest for me and also one-on-one time with Rayna after school.)  Not only are the twins now potty-trained (potty training 2 x two-and-a-half year olds is NOT for the faint of heart!) and dressing themselves for the most part, their personalities are emerging with stamina to enjoy outings and activities.  While Allison loves princesses and proclaims her “Elsa power” Garrett is a fan of anything sports.  Both played soccer this fall; but Garrett is showing a keen interest and aptitude for all things sport-related.  Furthermore, at the beginning of the year fighting vs. playing nicely together was about 50/50.  At the end of the year it is heart-warming and oh so cute to listen to them chatter and natter with and at each other and mostly play so wonderfully together.  And having two 3 year olds in the house anticipating Christmas is the sweetest: pretty gift wrapped presents being arranged and rearranged by little hands, Christmas songs being sung non-stop by little voices, seeing Santa and talking about Santa and the goofy grin this brings to Garrett’s little face (and hearing Garrett defend the existence of Santa when his big sister declares that Santa is not real), and the unsureness of the exact countdown for Christmas but the complete sureness of something really spectacular on the horizon bringing much excitement to these two little cuties.  Each day we are living out sweet and treasured memories. 

Rayna is now in grade 1.  She worked very hard this fall to master the monkey bars and was so sad when it got too wet and cold to play on them.  Furthermore, she also played soccer for the first time this fall and it delighted my soccer-loving heart to see her enjoy it so much.  Though her 6 going on 16 attitude can be strong at times, she is the kindest, most encouraging, and creative girl.  She warms our family’s hearts by making cards for us and wrapping “presents” for us – just because and on special occasions.  She’s been secretly working on a Christmas card for Ryan and I for a couple of weeks, and now that her writing is really starting to take off these very sweet gifts are all that more precious.   

Ryan’s local Chilliwack Blind Factory is steadily picking up pace and, along with the Saskatoon Blind Factory, is keeping him busy.  He plays pickleball whenever possible, which with work and family demands has been much less than he would like.  It’s still ‘the best thing ever’ to him (he’s been bugging me to start playing and maybe, just maybe, 2019 ought to be the year I try it out?).  Since fall Ryan has also started participating in music at church.  This is finally feasible for our family and has been very life-giving for him.  He hopes to press into more music involvement as much as our family demands allow.

At the beginning of the month I received another clear MRI report and the oncologist bumped up my scan interval from every 3 months to every 4 months.  This is very good news!  We are still trying to process and sort out what this means for pressing into the future (see blog post about Brain Injury Awareness); but joyfully embrace each clear scan.    I fill my days taking Rayna to and from school, helping with daycare drop offs and pick-ups, I re-learned how to cook (at least that’s what it felt like!), household task, resting, running 3 days/week, writing and I played soccer this fall (yay!).  I also volunteer once a month for my church visiting the “shut-in” elderly and will be increasing my involvement in this role in the new year.          

Our family likes to have fun.  I feel we have excelled at celebrating the “small stuff” this year: Valentines Day, Easter, summer, fall, Halloween and BIRTHDAYS!!!!  Though such things are now quite exhausting for me, my heart was bursting planning and hosting Rayna’s 6 year old birthday party in March and a (smaller) party for the twins’ 3 year old in October!  We’ve also enjoyed nature and hikes and the tulip festival (well maybe Ryan didn’t really enjoy that one, but the rest of us sure did ;) going to Hells Gate, the Othello Tunnels and, ****our family hiked Lindeman this fall!!!!!****  (for you non-locals, this is a not so easy, beautiful, rock-scrambling, local hike) This was a major accomplishment and symbolic of adventures the future could hold for our family. These are on-top of another epic summer road trip vacation (see Summer Vacation blog post for further details) visiting Kelowna (Ryan’s pickleball tournament, kangaroo farm, beach), Camp Oshkidee (so amazing, as always!), Saskatoon, Swift Current (Ryan had flew back home to work while I took the kids to my parents’) West Edmonton Mall.  Along the journey we connected with so many precious friends and family members.

Ryan and I also did a daytrip to Manning Park to cross country ski in Jan. Ryan enjoyed a “guys trip” to Phoenix in Spring which was much needed and deserved.  I enjoyed (at least the parts where the stomach flu wasn’t striking) a girls trip to Whistler in June.  And Ryan and I celebrated a couple nights away in October to the Sunshine Coast.  In Nov. I took Rayna to Okotoks to celebrate my sister’s 40^th birthday a low-key lovely time together punctuated by a super-fun surprise birthday party my brother in law threw for her!   Dec. found Ryan and Rayna going on an in-promptu trip to Maui (they got 2 buddy passes to be used in a 2 week time-frame, so obviously they had to go, right?!)

Phew! What a good year!  And that’s not even mentioning the visits from my parents, my sister and niece, our friends Brad and Ashley, local fun at Cultus lake waterslides, rides, the beach and splashing in the river! 

Wowee!  Isn’t life such a gift!  We celebrate gifts at Christmas.  Our family chooses to celebrate the gift of Jesus at Christmas.  What a gift He is.  It is by trusting Him that our family has been able to find such Hope and thrive during these past trying years.  We thank Jesus for the gift of “more and better life than we could have ever imagined!” (John 10:10 MSG, loosely quoted)  My Hope and prayer is that 2019 will be another year of “more and better life” for our family as well as yours.

Love and blessings,

Ryan and Cheryl

Rayna, Garrett, and Allison.

Here comes Heaven

After the twins were born my body felt battered.  It was difficult for my body to house those babes for 8.5 months then birth them.  After their birth we received many joyous congratulations!  Twins!  How wonderful and special and lovely and “aww I always wanted twins how lucky you are”…  I smiled politely at these dotings and Ryan cringed at them, thanking those who spoke honestly to the incredible difficulty it must be to parent twins.  I wonder how Mary felt after Jesus was born?  The wonder of it all painted with realities that weren’t so warm and fuzzy….forced to flee her homeland to protect her new son who people wanted to kill.  Difficulty.  This Christmas story overlaid with difficulty.  My own journey overlaid with difficulty.  Do you relate to a difficult, challenging personal journey these days that are to be bountifully joyous?  As I put myself in Mary’s shoes and look down at my own feet I am reminded to turn my gaze upwards.  Before my twins were born I chose the verse “this is the day that the Lord has made let us rejoice and be glad in it.” (1)  Like Mary chose to treasure the moments surrounding Jesus’ birth and think about them often, so too I shall choose to treasure these moments in my heart and think about God’s hand in them, often.  I choose to declare this is the day that the Lord has made and I will rejoice in it daily, no matter the state of the day, no matter if I feel battered, no matter if the difficulty of life is particularly heavy.  I choose to trust in God who says nothing is impossible with Him.  I choose to rest IN God’s consuming Love that I may claim the angel’s proclaimation, Do not be afraid, for my own.  And what I am experiencing in the process is heaven finding its way into my life here on Earth.  And it is beautiful, marvelous, and exactly what I need to journey this battered body through the difficulties along the way being able to treasure up the multitude of spectacular gifts, daily rejoicing, letting fear evaporate because God is with me.  Always.

This is why I celebrate Jesus this Christmas. 

(1)  Psalm 118:24

(2)  Stongly influenced by the fantastic preaching of Scott Gaglardi, see Here Comes Heaven sermon series  http://www.firstave.org/listen/

Brain Injury Awareness

I am on a journey to greater self-awareness. My cancer diagnosis shook this loose as I read that some of my personality traits could be facilitating cancer growth. Furthermore, my diagnosis shoved my mortality in my face precipitating a spiritual deepening.  I am learning that (though I’ve down-played or down-right ignored them) symptoms of brain injury from brain cancer (and treatments) have changed my life.

As I learn about my personality through ennaegram, I learn that my personality feels it is limitless.  We are over-achievers.  The sting in this is that we lose a sense of what we value, what we are trying to achieve.  Furthermore we are good at reading others expectations and performing, over the top performing, to exceed those expectations. We can satisfy a wide diversity of expectations depending on who is surrounding us at any given time... At the cost of losing sight of what really matters to...US.   

Ooo it hurt to read this, surely not me?  Then as I let it sink in.... Yup me.  I'm on the journey of shaking off the expectations of others that I've been so effective and capable of achieving.  I'm on the journey of discovering what truly matter to me, what*my* passions are.  Where *I* want to spend my precious energy.

This is so pertinent because I used to have an apparent abundance of energy (I was “limitless”!).  My personality type is driven, focused, goal-attaining and high energy.

I find myself post brain injury trying to resume life in that high energy fashion (this is particularly true because my personality struggles to find personal value in simply being, value is found in doing---- and not just doing, but winning in what I do). This did not used to exhaust me (or I chose not to acknowledge the exhaustion), but trying to always win, to never fail, to be the best is exhausting.

Today is the day after the kids’ church concert, a birthday nail party for my mother-in-law, helping my daughter pack for an in promptu trip, and then a birthday celebration at a noisy restaurant.

I feel wiped, not a sleepy tired kind of wiped (and my body’s not particularly tired) but an exhaustion in my head ... I’m so tired and by now I know it's gonna a couple days to recoup.  My husband asks at time like these "did you sleep okay?". And I am learning I need to find a better way of describing what's going on for me, because yes, (as long as the kids sleep) I always sleep well.

My mom is well versed in brain injury fatigue.  My dad has had numerous brain surgeries over the past 30 years due to a benign brain tumour and for as long as I can remember, battles brain injury fatigue.  My mom has educated herself on this topic and can personally speak to the experience of what brain injury fatigue means. Growing up I too had a secondhand experience with what brain fatigue can look like: avoiding restaurants at prime times, limiting time at family gatherings, having to strategically plan my piano practicing as a kid to not disrupt Dad’s rest.  But even with these experiences and mom’s awareness of what was going on I didn’t truly understand my own brain injury fatigue until now.  And I think I've been in denial with how dramatically it is affecting me. (Remember I like to perceive myself as limitless.) People are starting to ask me if I'm going to go back to work.  And immediately I start making plans in my mind for when and how this might play out.  However, when I step back I see I have not truly been acknowledging my reality.  This means that I’ve been unable to educate my husband, my family, my close friends and my physicians about what I have been experiencing.

This tired day after overload I decide I need to educate myself on what drives my increased fatigue, to be self aware, because I absolutely cannot keep up the facade anymore.  I am not who I used to be.  This hurts, but I am confident the pain of this process will drive me deeper to my core, my God given passions, gifts and talents.  And I am confident this will strengthen my relationships and poise me to become a more loving, passionate, emotionally assessable wife, mother, daughter, friend.  So I press in.

What I read today describes so much of what I haven't been able to put to words.  I feel it is valuable to educate those I care for about what I am experiencing as I am learning my own...... limitations. 

I read a couple articles in which I saw myself so clearly.  Reading these was a relief because finally I can say “that’s me!” and have words to describe what life looks like for me.

Below I will share about my experience.  I will take much from the following 2 resources and encourage anyone interested in understanding my situation and brain injury and brain injury fatigue in more depth to read them in their entirety (they are brief and easy to read)

From: https://www.headway.org.uk/media/3995/managing-fatigue-e-booklet.pdf

https://www.brainline.org/article/lost-found-dealing-sensory-overload-after-brain-injury

From these resources I was able to see that my choices allow me to manage my fatigue.  This doesn’t eliminate it, and indeed I’ve already employed many of these measures; but by naming what I’m experiencing helps me to embrace even better coping strategies.

Firstly, I am coming to see that I usually appear “normal”.  My deficits are NOT readily apparent.  I work hard to compensate for them or overcome them.  It took me awhile to realize that people didn’t realize just how tired I was, then when I did realize they didn’t know I quietly tucked that information in my back-pocket (not wanting to draw attention to my decreased abilities.)

The one resource states: “The information aims to help you, your family and friends to understand your fatigue and how it affects you….In order to cope with fatigue you must first be able to recognise it”

I read this and realized I need to become an active student and advocate of my condition; not a passive, inattentive by-stander.

“So how do you know when you are getting fatigued or fatigue is starting to build up?”

I’ve begun to learn that what I previously feared were symptoms of my cancer returning are truly symptoms of fatigue

“● losing concentration/attention” (for me--- having to work extra hard to mentally focus on what I’m doing or need to do**)

 “● eyes feeling heavy, and my eyesight not focusing properly

● head feeling ‘fuzzy’

tension Headaches

● getting irritable

● limbs feeling heavy”

It felt good to read in black and white:

“Often [fatigue] can creep up”  So I need to learn what triggers my fatigue so I’m not blindsided, so I can manage and cope with it.

In the following quote I’ve underlined the ones most pertinent to me

“Things that trigger fatigue will be different for everyone. Some examples of activities reported to be more tiring following a brain injury include: ● working at a computer ● dealing with paperwork/correspondence ● being in a busy environment such as a shopping centre ● concentrating on one conversation in a noisy place like a pub ● driving and catching public transport … it is likely that certain activities are more tiring for you; what are these?”

Its described that after a brain injury the brain filter no longer works properly leading to sensory overload.  Where a healthy-brain would strategically ignore non-important stimuli, the brain injured brain takes it all in leading to over-stimulation, also called flooding.  Another article highlights about sensory overload post- brain injury(my personal notations in parentheses).:

“If it seems like your sense of touch, taste, smell, hearing, or vision is extra sensitive or heightened after your brain injury, it’s not your imagination….

-Sounds that you barely noticed before are alarming and startle you. (**I hear small noises and see things like flickering lights more acutely --- and irritatingly--**)

-It feels like you have megaphones in your ears. (Yes! I am teaching my 6 year old not to shout or even talk loudly into my ears because I cannot handle it)

-Background sounds and stimulating environments become overwhelming. (parties are no longer enjoyable)

-Fluorescent and bright lights give you headaches. (**I don’t necessarily get headaches but they make me feel ‘squirelly’ and make it difficult to focus**)

-Large gatherings of people feel overwhelming. (ABSOLUTELY…I’ve finally gotten to the point where at least they don’t usually cause anxiety anymore)

sights and sounds that didn’t bother you before, may now trigger anxiety and the fight-or-flight response where your whole being feels threatened and out of control. It can be very taxing, physically and mentally.”

I’ve never liked busy shopping centers (does anyone?!) but now they exhaust me so I only go at quieter times of the day/week.  As for concentration on conversations in a busy place: Just last week I felt like my Dad when I was out for a small Christmas gathering with girlfriends at a restaurant.  What I mean is that being in the restaurant with a bunch of conversations in the background, trying to engage in the conversation with my girlfriends, trying to figure out what I wanted to order, was exhausting.  It saddened me that this occasion that was supposed to be celebratory felt so draining.  But interestingly (happily) I realized that as the restaurant started to quiet down my energy level increased and I could enjoy myself.  Trying to have a conversation with so many other stimuli around was an (exhausting) mental battle.  If its too loud or chaotic my head simply spins.  If it’s a touch loud and not too chaotic and I’m well rested then I can enjoy the celebration but know that the following day I’ll be tired.  I realize now that I need to decide how valuable such an outing is- because it’s an energy zapper.  (I kinda feel like a hearing-impaired 80 year old in this capacity…my definition of a good celebration has markedly changed!)  It was on my 36^th birthday (a year ago) that I wanted to have a big bash to celebrate my survivorship and birthday.  So we had a bunch of people over like we used to do before we had kids.  After that party I realized that was no longer the type of party I enjoyed.  Reading these articles brings greater clarity to the matter.

This article helped me to more clearly see what was going on when I flew by myself last year.  I was shocked that flying from little Abbotsford airport to Calgary airport (where I have flown to and from so much) was difficult.  I had to focus super hard to make sure I was where I needed to be, I had to actively keep myself calm, and it was a taxing experience.  However, I learned from that experience and this year when I flew with my daughter to Calgary again I anticipated that it would probably feel overwhelming.  To mitigate that I ensured we arrived super early (it was quieter at the check-in counter and there was absolutely no stress about running late --- which I’ve never liked, but which completely flusters me now) 

Furthermore, the article highlights these points (emphasis mine!!):

“What can you do? ● Be realistic in your planning – pacing activities to avoid the boom-bust cycle. ● If you don’t achieve an activity try to reschedule it for when you are not fatigued. ● Try not to brood on things you haven’t achieved. Notice when you have done things well and celebrate these achievements. ● Be aware of and acknowledge your feelings and emotions, but try not to dwell on them. ● Plan time in your schedule to do pleasurable activities that will make you feel good about yourself.  ● Acknowledge that you may not be able to do as much as you did previously.”

And: “ to Limit exposure to avoid sensory overload:

- Avoid crowds and chaotic places where there are a lot of stimuli, like shopping malls.

- Shop in smaller, quieter stores when possible.

- Eat out in restaurants when they are quieter, in between regular meal times.

- Hold conversations in a quiet place.

- Ask people to please speak one at a time. Explain that you’d really like to hear what everyone has to say but you can only hear one person at a time.

-Limit your exposure to noisy stores and loud situations like sporting events, the movie theatre and children’s school activities.”

At the beginning of Kindergarten I thought I would volunteer in Rayna’s classroom/field trips since I was at home full time.  It quickly became apparent that that would not even remotely be feasible.  I now rarely attend any fieldtrip, this article takes away the guilt of this!

The article further suggests “working within your available resources. It is important to plan when to take rest breaks during the day. Resting requires going somewhere quiet and sitting or lying down for a short period. It is better to take breaks often rather than having one long break when fatigue hits you … Relaxation can…help improve energy levels, leaving you feeling refreshed and making you feel more mentally alert, thus making the most of your resources. People with fatigue are advised to take regular breaks.”

Naturally, I try to push through my fatigue (because, quite honestly, resting feels boring) but I am finding much value in incorporating scheduled relaxation and rests.  I realize that running near empty is much less efficient than stopping to fill my tank through out the day (this has been hard to realize since my battery drain is not linear, which is why it’s so important to be aware of when the drain is starting because my battery is like a crappy cellphone battery that goes from 30% right to 0% and shuts down.  So I fatigue easier, but also once fatigued my capacity to manage irritability (I have 3 young kids!) is much worse than it ever was before.

“Following brain injury you may need more mental effort to perform a task and you may experience difficulty sustaining this effort over time. Some people have described reaching a point at which their brain ‘shuts off’. When experiencing ‘mental fatigue’ people describe being unable to think clearly and have difficulty concentrating. It may be that cognitive difficulties resulting from your brain injury may be more noticeable when you get fatigued. (YES, this is exactly it) Everyone tends to become forgetful and make more mistakes when they feel tired. Therefore, making best use of your thinking resources through applying strategies may be a way to make fewer mistakes and make things take less effort.”

Like making lists and writing everything down, which I already was fond of doing and post-diagnosis ramped it up.

     Also, this article further recommends meditation.  My counselor recommended meditation to cope          with anxiety.  I find it extremely helpful, which after reading this article makes even more sense!

Finally, its apparent that while I am cognitively intact my surroundings can dramatically limit my ability to perform cognitive tasks.  It is recommended to “do cognitive work when your environment is quiet. Eliminate as many distractions and interruptions as possible.”  On reflection, I realize this is the only type of environment where I can truly do cognitive work, if I want to think clearly on something I deem important I cannot have noise around or busy visual stuff going on in the background.

Reading these articles I see why I feel “like myself” in quiet adult environments when I’ve had adequate sleep.  Conversely I begin to see why my kids exhaust me (more than the average parent).  And after reading this the thought of working as a pharmacist in a big box store (fluorescent lights, visual commotion, a variety of noise: children screaming/crying, overhead pages, a need to be accurate in my work – on a computer screen-- , multi-tasking: determining if prescription is appropriate, checking prescriptions for accuracy, talking to patients, fielding phone calls, answering questions from my assistants, corresponding with physicians, having patients complain because I’m too slow…)  well yikes the answer to if I plan to go back to work soon simply has to be --- there is much more to figure out before that ever happens! 

It feels good, though to have a greater understanding of myself to help make the best choices with my time and energy.  This is very valuable.  I am grateful for this breath in my lungs and, deep breath, acknowledge that I am limited; but, optimistically, in knowing my limitations I am empowered to keep pressing in to living my fullest life!

References:

The Road back to you, by Ian Cron & Suzanne Stabile

https://www.headway.org.uk/media/3995/managing-fatigue-e-booklet.pdf

https://www.brainline.org/article/lost-found-dealing-sensory-overload-after-brain-injury

https://www.braininjury-explanation.com/consequences/invisible-consequences/overstimulation-floodinghttps://www.braininjury-explanation.com/consequences/invisible-consequences/overstimulation-flooding

Advent Letter 2018

Advent finds me.  She finds me weeping and wondering, broken and whole, hurting and healed all co-mingling in the mystery that is Jesus.

Is this Christmas season far from "Christmas-perfect" for you? Is your journey towards Christmas messy, ugly, difficult, seemingly impossible?  Mine is. If yours is too, I invite to accept the gift that ugly and beautiful are NOT mutually exclusive.  I invite you to accept the gift that in the messy, painful, angry, and impossible, Hope and Joy can still be found and coexist with it all.

It is in the gift of these "co-minglings" that Advent finds me with a Joy that accepts the realities of the day (no matter how rotten they are) but chooses to look with gratitude towards the glimpse s of Hope tucked into each day as i slow down and keep my eyes and ears and hearts open.  

Here is my Advent journey this year.  Not at all concise.  Not at all a pretty gift wrapped up in a perfect bow.  But this Advent journey of mine is rich and good and beautiful.  Come join me:

I entered Advent looking, seeking for more of God’s glory.  On earth as it is in heaven.  Our church’s sermon series is “here comes heaven.”  Bright, shiny, optimistic!  Let’s replace despair with Hope!  These are words I tout from my blog over and over.  These are words I believe whole hearted. They are pretty, and they are perfect, and they are inspiring.

 However, I am realizing that these words have an underbelly that must be addressed.  The hope of Christ is not a perfectly shiny packaged gift with an extravagant perfectly crafted bow. Yes it is a simple (and beautiful) gift to receive (by simply believng): but, the journey of opening it is an arduous one wrought with the challenges of being human.

Advent. 

Being expectant.  A season of waiting.  The “not yet”.  Looking towards the unknown.

I went to an advent retreat yesterday (1).  This retreat highlighted the journeying surrounding advent in the scriptures.  Angels journeying to Mary and Joseph and Zechariah.  Mary journeying to Elizabeth and Jechariah’s place.  Mary and Joseph journeying to Bethlehem.  The journey into the unknown.  The journey of the impossible -  immaculate conception.

As I learn more and more about my personality, I uncover that as a performance driven perfectionist I am not very in tune with my emotions.  I’ve always known that I’m not a terribly emotional woman.  I didn’t realize until recently that I wear this as my armour.  Brene Brown says perfectionism is a 20 ton shield. (2)  It hides the shame and fear.  I am on a journey towards dismantling my shield, to lightening my load.  A journey towards understanding myself better.  Understanding who God has made me to be: gifts, talents, strengths…. weaknesses.  Oh those weaknesses!(3)  It’s a tedious and not so pleasant journey.  It forces me into the ugly that I’ve become proficient in either running from or smoothing over with a perfect, pretty bow of achievement and efficiency.   I don’t like opening up the pretty package and getting my hands in the junk (sh#t) within. 

One station at the Advent retreat was contemplation at the manger crèche: an empty nativity scene.  As I look at the manager crèche, perfection slips away.  I am overcome by the ugliness of it! A stable to give birth in?!!  A manger to place a babe in?!!  Think about this place in detail, allow time for the luster of Christmas “beautification” to fade.  Here is a drafty, stinky building, most certainly filled with live animals and sh#t.   Not the picture perfect place to birth your first child!  This advent season is allowed to be messy because look at this very manager image: it is messy!

As I incredulously contemplate this Jesus whispers to me, “Yes’ Cheryl, I was birthed in “imperfection” to bring perfection.

I recoil, because I like matters to be shiny and perfect.  How do I process, this?

Slowly I begin to see it:  the ugly and the beautiful co-mingle.  This manger scene.  Beautiful and ugly swirled inseparably.

And I begin to think of the cross of crucifiction.  This is a gory scene.  Ugly and gruesome.  Yet, it too is beautiful.

Within me I hear permission, “it is ugly, Cheryl, it’s okay to scream at life’s imperfections! Its okay to scream at life’s unfairness! It’s okay to scream at the downright awfulness of it all!”  It’s okay to scream at my cancer diagnosis and everything that has unraveled.

I see I have not allowed my anger of grief to sing her song yet.  And I see I must do this to keep pressing in, to pressing forward into living.  To keep pressing forward into Hope.

So here it goes:

Journal excerpt Nov. 7/18

The flux between stages of grief is confusing and complex and makes me feel like I don’t have a place.  I dance between denial, bargaining, depression, acceptance, and anger.  Yes anger I will name you.  It’s a funny thing hard to describe.  Hoping and pressing into hope is unsettling when acceptance resurfaces-  acceptance that this is what my life looks like, stage 4 brain cancer diagnosis and prognosis and all and the potential realities.

These questions: What if I only have 3 more years to live? (an arbitrary amount of time that surfaced after reading about a 5 year glioblastoma survivor)  If that’s the case what do I want to prioritize?

And this: I have glimpsed Jesus so intimately, I have touched his cloak and it was magnificent, that fear truly does evaporate because I know within my core that no matter what all will be well.

But: How do I belong in this world when I’ve begun to enjoy “normal” again – running with a dear friend, soccer, doing Christmas: buying gifts, planning, celebrating.   But I am so far from normal.  I look normal and can pretend well that I am normal but underneathe there is always this which is so NOT normal:

DIAGNOSIS.

I feel like an expat not truly at home in my native country (“the non-cancer world”)  but not truly at home in my new country (“the cancer world”).

How do I deal with the dance between enjoying life and being optimistic and being aware of the monster they say lurks in my body?

How do I choose priorities when death could be imminent, but I’m pressing into Hope that it’s not.

These are my struggles

My uncle is dying from MS and this breaks my heart.  His daughter, my cousin, has always been my dear friend.  His youngest grandchild just a babe.  And I rally against God in the too soon of his body failing him. Anger for him.  Anger for me.

Yes it is anger.  I will finally name her for what she is.

The questions: Why? Why me? Oh God why me?

I AM NOT OKAY WITH THIS!

God do you not see my hopes and plans?

God do you not see my love for you?

God do you not see my husband? My children?

Oh God preserve my life.  Oh God give me a long life.

Oh God do you see me?  Do you see me! Do you see me ?!

(the whisper response): I see you.

Please heal me, I whisper back.

So what shall I do in all of this?

What shall I do?

I lean into the words of Katie Davis Majors and I choose to dare to hope. I join with her as she says,

“"Maybe courage is trusting when we don't know what is next, leaning into the hard and knowing that it will be hard, but more, God will be near.

Maybe bravery is just looking fear in the face and telling it that it does not win because we have known the Lord here.

Though we tremble and feel uncertain, courage means we press into a God who is certain, sure, steady. He carries us; He lifts our heads. And His unfailing love and comfort become our courage and our hope.

Katie continues, “"It is a brave thing to hope, to continue in hope,..."Chin up, love."(God) whispers. "Hold on to that hope.  Eyes on me dear one. I am not done yet." (4)

Yes, I choose to dare to hope.

(ps.  All this took place on a Sat AM before soccer practice.)

End of  journal excerpt

At my advent retreat I participated in 2 labyrinth exercises.  The handout I was given states “A labyrinth is a tool for prayer whereby a person follows a path in prayerful silence to a centre.  It is a living representation of our life journey from birth to death to new life in God” 

These are 2 images an image of an outdoor labrynith similar to the one I walked on Saturday and an image of a paper labyrinth I began coloring.  These experiences were surprisingly fruitful for me.  First I sat and colored a labyrinth.  It was annoyingly tedious. Then I walked the Labryinth, it was frustratingly tedious as well: just let me get there. Here are my responses to my labyrinth experiences.

As I return to Mary and advent I see an arduous journey demanding courage and hope.  A journey of pressing into the unknown, the waiting though it seems fruition is not coming.  Pressing into the journey while I’m screaming “Enough God. Enough, I’ve had enough!” And God whispering, “press on child.”

the Joy is in the journey,

I am not a God of “efficiency”

Stand at the watchtower and wait

Mary’s arduous advent journey.  Putting words in her mouth to echo my own I hear “a long donkey ride while pregnant?! Are you kidding me?!” and “This is taking freaking forever!!!”

But God replies, “My gift is… forever.” 

---------------------BREATHE------------------------------

And to my performance driven perfectionist self:

Slow down.  Enjoy the journey.  Lengthen your days by being present in them.

Like Mary chose to say, “Yes”, to being Jesus’s mother I say “yes” to being present in the ugly, in the pain, in the unknown, NOT rushing to find certainty (that does not exist); but finding beauty right where I am.

And I see this is what hope and courage mean  ----  not waiting for the rescue in angst, but realizing that the rescue is actually in THIS moment, every moment – God with me –through the ugly, broken, stinky mess that life is.  God with me: good news that brings great joy.  Good news and great joy that exist even when the impossible of life comes around and trys to steal this good news and great joy.  Good news and great joy because nothing is impossible for God. 

I’ve been warring with my diagnosis this past week as I await MRI results.  I sat in church service this morning very much in need of a HUGE dose of hope.  In need of being reminded, passionately reminded, that I have a God who gives hope. Our pastor this morning reawakened the hope I need to keep pressing on in this arduous journey.  He preached that when the angels spoke to Mary “nothing is impossible with God” the angels offer not an announcement; but rather an invitation.  An invitation to say yes, like Mary, to step into the impossible trusting God to make it possible.  An invitation to step into “holy boldness” and courage. Step by step believing that God is bigger than my impossible.  SO much bigger. (5)

This is where advent finds me this year.

To close, an Advent poem voicing the longings of my heart to see cancer destroyed in my body that I may raise my children and more.  Please join me in prayer for the impossible to be realized in my life.  Thank you.

My Holy Assignment: an advent poem

By Cheryl Rostek

My Holy assignment is to love my children

The best I know how.

To open my heart.

Tender

Broken

Loving. Oh so loving.

Wanting to protect these precious babes.  

My gifts.

So pure.

To Hope so boldly

Pressing in to the

Unknown.

Bravely.

With all my guts

Yearning

Praying

Believing

That there is a horizon of

Good

Love

Joy

Peace

Life

In this mysterious (scary)

Journey.

Oh God rain down blessing on this

My holy assignment.

______________

(1) Advent Retreat hosted  by Lorie Martin, loriemartin.com

(2) https://youtu.be/cvhgOr1Mcrk

(3) I watched “A wrinkle in time” with my 6 year old this past week when she was home sick.  I loved this movie.  I read the book years ago and didn’t think too much of it : too much fantasy and stuff that didn’t make sense to me.  As I watched the movie 25 years older I have much appreciation for the fantasy, for the “doesn’t make rational sense.”  In the story Meg is told that her weaknesses is her gift.  I am on the journey of discovering my weaknesses.  I hope that as I unwrap them, that God will grant me the ability to see how my weaknesses can serve me as a gift.  I think Paul’s words in the bible verse 2 Cor 12:9: [God] said, "My grace is all you need. My power works best in weakness." So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.

(4) Daring to Hope, By Katie Davis Majors.

(5) http://www.firstave.org/listen , at time of posting sermon not posted online yet but I’m sure it will be- sermon 1 in series “here comes heaven”