Holding Fast to Hope

It's amazing how I had forgotten the intensity of a toddler tantrum.

In parenting amnesia, one forgets many things.

It is not as though tantrums are not an occurrence in our daily lives.  Being honest, I'd have to say that not only do the six and four-year-olds indulge in such emotional catharsis, I have been known to have a few myself (in fact this morning when my second-born took two ornaments off the tree, dipped them in his oatmeal and started swinging them around with drops of goop flying everywhere I had to reign my emotions in with some pretty hefty self-control).

Not long after the older two were off to school, the youngest began a tantrum that lasted well over an hour.  Immediately after his fury abated, Andrew started his own; throwing fishy crackers hither and yon as his lungs fired up.

I have discovered yet another dynamic about twins: at times their tantrums are in sequence and at others they are in simultaneous format.  God bless those who work with several toddlers at one time.

I found a part of the wiki definition interesting to say the least: For the toddler, 'tantrums are normal...the force of the tantrum is a kind of measure of the strength of character the child can possess eventually, if [s]he's helped to harness that energy'.^[6]


I have concluded that there is a lot of character developing in our home.

***
So what does all of this tantrum topic have to do with holding fast to hope?  Well first off, it doesn't hurt that Hope, the person :), literally shows up on the afternoons that Arden is at work (Hope helps me by caring for my little men & assisting with the household tasks during the hardest part of the day).

However, I have come to realize that it is only through the principle of hope that I can get through some of the 'loss of control and frustrations' of life.  I have had a lot of time to think about how before this journey of many chapters, I once focused so much of my energies in thinking laterally (in the sense of looking to other people) in whatever circumstance I was in.  Although for many years I have looked to others for my love, presently I am learning how to love laterally while seeking my strength from God.  This has been one of the most significant ways for me to understand the nature of hope in my life.

As a child, my Christmas season was filled with all kinds of love, joy, and peace.  It seemed easy to have hope when everything was going my way (and to be honest, my hopes were placed primarily in whatever I was going to get under the tree).  It was easy for me to get caught up in the trimmings of the season - in the candles and decorations and the baking.  Christmas was literally a time of light, beauty and sweetness for me.

There are moments where I now contemplate this childhood wonder.  Trials, sufferings, betrayals, losses, pain, confusion, despair, struggles, grief, denial, hardships, disappointments and sorrow have flowed into my life both directly, indirectly and in my surroundings over the past six months.  My heart breaks in a depth and breadth hat I had never known before.

In my brokenness, and as the darkness is lengthened as winter solstice approaches, I am recognizing more and more that it is in the darkest times where the flicker of candlelight shines the brightest.

***

Hebrews 10:23

New International Version (NIV)

²³ Let us hold unswervingly to the hope we profess, for he who promised is faithful.

I was reminded this week that Mary was able to praise God in the midst of a trial: "my soul magnifies the Lord and my spirit in God my Saviour." [Luke 1:46-55].  It amazes me that God chose a woman whose name - Mary - has the meaning of bitter to be the mother of His son.  Therefore, from bitterness, light came into this world.  Interesting.

This young woman was surrounded by oppression in the nation of Judea and, not by her own choice, was placed into a situation - a trial - that would have irrevocable complications on her life.  She was unmarried.  She was misunderstood.  She was alone.  

But then again, she wasn't alone.  The mystery of the incarnation was within her: Immanuel - God is with us. 

As suffering produces perseverance and perseverance character, tantrums build my character which then translate into hope.  And hope does not disappoint because God has poured out His love into our hearts by the Holy Spirit [Romans 5:4].  Knowing that God is with us should empower me with a life-giving strength.  With courage.  

The lonely space our heart currently navigates may not change, but the substance of our journey through it can be transformed. ~ Erin Gieschen.

Inspired by the theme of this first week of Advent - Hope - I have been meditating on the importance of hope.  Unlike investing in stocks or planning supplies for a party, hope is something we cannot speculate on.  Hope is simple in the fact that it is a cry of the heart. Echoed by love and energized by faith, hope can be the source of peace and joy - therefore all of these are intertwined: hope, love, faith, joy and peace - and through Christ we are given freedom.  Complete, limitless, rich and providential freedom for it comes from a generous, merciful, grace-filled, loving Creator God.

Therein lies the Kingdom heart - a loosening of our fists in order to open our hands to receive the blessings that come directly from the Father.  Then we can do the impossible, live beyond ourselves and be filled in times of drought, heartache and suffering; we can do this for our source of hope is rooted in the ultimate source and our hope is complete in Jesus.

Grown from a root of hope, Christmas is a season of love.

In recognizing this hope, I have begun to light a white candle each day.  I have prayed for hope into the lives of my loved ones.

I have intensively studied my concordance for every reference of hope; and I have found that there is blessing in seeking hope with my whole heart for it leads to restoration [Jeremiah 29:11-14].  Hold fast: there is always hope.

Hope in Him, though I be broken;
Hope in You, to be lifted up;
Hope in God, despite a downcast soul;
Hope comes from Him, finding rest;
Hope in His word, encouraging others;
Hope in waiting;
Hope in the Lord, His love is unfailing, His redemption is full;
Hope in the Lord my God, who blesses me in His help;
Hope in His unfailing love;
The fulfillment of hope, a tree of life;
Future hope, through reverence to Him;
Hope in the Lord, the renewal of strength;
Hope in His plans for us, our future;
Hope in remembering His great love;
Hope in restoration;
Hope does not disappoint;
Hope for future glory;
Patient, hope for that what we do not yet have;
Being joyful; 
Encouragement;
Filled with Joy and Peace;
Love always hopes;
Faith, hope and love;
Christ in you, the hope of glory;
Endurance;
The Hope of Salvation;
Faith and Knowledge resting on the hope of eternal life;
While we wait for the blessed hope;
We have this hope as an anchor;
Which then leads us to
Being sure of what we hope for and certain of what we do not see. 

***

My Christmas this year is founded on things far beyond sentiments.  It isn't about a day where I'm wrapped up in a commercialized, packaged up, or condensed version of love.  Christmas can hold all of the traditions - old and new - that are part and parcel of the season; however, this year I'm moving away from many of the tasks of Christmas that I once considered as 'necessary'.  As much as I researched hope, I knew I needed to understand the definition of a term I've heard for so long - Christmas trappings - and from there I discovered how I no longer have to be weighed down by what I perceived as "check-the-box" items to make Christmas Christmas for me and for my family. 

trappings  1. An ornamental covering or harness for a horse; a caparison. Often used in the plural. 1. the accessories and adornments that characterize or symbolize a condition, office, etc. the visible trappings of success  2. (Individual Sports & Recreations / Horse Training, Riding & Manège) ceremonial harness for a horse or other animal, including bridles, saddles, etc.

For instance, I used to think that Christmas couldn't be Christmas without sugar cookies (and I vividly recall my mother making, decorating and mailing said sugar cookies to me in France while I was there on an exchange).  Attempting sugar cookies this year would be in the "too-hard-box".  And that's okay.  My condition makes it necessary for me to evaluate every expenditure of energy; yet in so many ways, that's a blessing.  I have had to choose what's really important and in doing so, I am freed from so many of the obligations which once held me back from enjoying Advent.

1st Sunday in Advent with John

The simplicity of it is exactly that: it can be simple.  

And Christmas can be great in its simplicity - something I have to remind myself whenever I get caught up in the frustrations that have the tendency to creep on in when I'm disappointed about not doing it all.  I may reminisce about a frosted green cookie, but I am choosing to find joy in the present tense of spending time with my boys.


If my catalyst is love, then whatever I am able to do for (and especially with) my family is a blessing.

Advent - and Christmas itself - is a story about love.  The gift we've been given is that of a true, deep, unfathomable, unending, and never failing love.

A love which, if we choose to invite it in, comes into our place of brokenness to heal, energize and transform.  I believe it.  By the grace of God, I live it every day.  By the grace of God, I hold fast to hope.  And, by His grace, I pray I may have the opportunity to share hope, joy and love well beyond this Advent season.

A little bit of daily joy

Immeasurably Thankful

I sincerely mean it.

If anything, I am coming to understand that the testimony of my life is fully entrenched in the tests that I am given (and I choose the word 'given' specifically - because they are gifts no matter how challenging they may seem) - and in particular, in the ways that God has blessed me with immeasurably more than I could've ever imagined.

This includes the fact that I am immeasurably thankful.

And I know that this is incomprehensible - it defies all logic.

I have found that the best things in my life are exactly those things that don't seem rational - the things that seem impossible to manage - the things that seem the hardest to tackle - all of the things which, at the end of the day, are ultimately the very best things.

We all have choices to make about the way we look at things.  I can cite a handful of 'situations' I that have faced (relocation to Fort McMurray, becoming a mother of twins in addition to two young sons, the diagnosis of a life-threatening condition) for which I was told I couldn't make it through.  This was true enough.  Without God's strength, grace, and mercy I wouldn't have been able to make it through them.

But see that's the beauty of it.  I didn't have to face them alone.  I'm aware that this is a faith-based perspective that - quite frankly - I don't have any quantifiable way to 'explain'.  But I know what I know what I know.

And I know that I am thankful.

For pretty much every single thing I used to find complaint with, I now find joy.  I seek joy out.  I hunt it down.  I embrace it.

Joy.

What an unusual word in our lives these days.

Trust me when I say that I am still human.  My physical, emotional and psychological states have been taking a beating for many seasons.  Yet I am slowly learning that my feelings aren't remotely as important as my perspective.

Where "busy", "stressed" and "overwhelmed" were once the primary adjectives of my old life, I am choosing to eliminate these words (as well as "worried", "depressed" and "fear") to describe my experience.  I am working on choosing words that encourage, edify and build up.  Joy just so happens to be one of them.

Because of my condition, I have been so blessed to have a whole village of loving people helping me to raise these beautiful boys.  And I am so grateful.  I am also so grateful - filled with joy - for each opportunity I have to use these hands to care tenderly for Nate, John, Andrew and Samuel.

***

However, being thankful is much, much more than even all of this.  

Perhaps most importantly, the truth of the beautiful life of one little boy has changed everything for me.

My thoughts of this little man, Milo - who is continually touching my heart - inspire me to a whole new level of understanding of the role joy plays in my relationships with all of the amazing children in my life.  

I have learned that heaven is revealed through children and - without trying to sound melodramatic, as I believed I was only a step away from my home myself - learning more about it became pretty important to me.  So in light of all of this, I have been meditating so much on Christ's words about the kingdom of heaven.  

The Greatest in the Kingdom of Heaven

 ¹ At that time the disciples came to Jesus and asked, “Who, then, is the greatest in the kingdom of heaven?”

 ² He called a little child to him, and placed the child among them. ³ And he said: “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. ⁴ Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven. ⁵ And whoever welcomes one such child in my name welcomes me.

A call for us to change and become like little children; to welcome children in His name.  As Advent approaches, consider for a moment the joy of a child at Christmas time.  As Christmas draws near, contemplate the gift of the children in your life.

It is a mystery to me that from a heart divided in two - from my extreme broken-hearted grief in missing Milo to such joy in the knowledge that he's home - somehow my love grows and grows and grows.  I miss this little boy so much that I find myself compelled even more than ever before to not miss one moment with the little boys that are in my care (and all of the children that fill this heart of mine).

Mr. Milo is an inspiration of so much more than joy and thankfulness - he is a light shining in a world where brokenness is a part of everyday life.  

I have been blessed immeasurably more than I could've ever imagined.  I am so thankful that I had the privilege to hold a ray of sunshine - to hold joy - in my arms.  

***

I am learning through these seasons that the primary difference between happiness and joy is that happiness can only be found if what is happening is something you like whereas joy can be found no matter what is happening.  

Now when people say, "Woah! You have your hands full!", I am quite content to respond: "why, yes indeed, I do."

I feel that it is important for them to know that my children are not a burden, they are not something that hinders me from doing what I want to do, and they do not prevent me from doing great things.  Quite the opposite, really.  They fill my home with love, they incite purpose for my days and, in God's grace through loving them, I am doing great things.

Yes, there are more challenges than I ever expected and yes, I am stretched beyond anything I could've ever previously imagined.  But I have learned through so many hard learned lessons of this past year that challenges and living beyond yourself are both to be embraced.

Summer 2010

Summer 2011

These boys are (each and every one of them) a blessing.

And it is a privilege to care for them.

I was explaining my new-found understanding to Arden on the weekend.  I mentioned how it has allowed me to find that I am thankful even for their poop.  About twenty minutes later he happily presented me with Samuel (who happened to have a full diaper) in order to 'have some more joy'.  It made me laugh.

I am truly content to find myself changing a poop-filled diaper.  Even if I didn't get a reward (which I do - each time I give a belly button a playful poke, a scrumptious little giggle is the result), I still would be grateful.

***

And just in case it appears that I am exclusively being a tireless, sentimental optimist, maybe I should put the poop into context.  Not only am I choosing to be thankful for the poop, I am finding that there's a lot of humour (scatological as it may be) in the poop.  So for the finale, I'd like to offer three stories from my not so distant past dealing with... well, poop.

[From October 2010 - From when the twins are approximately 5 months old]

I really can't talk too much about poop these days mainly because John is potty training... again.  This morning he decided to make a statement about the fact he was going to perform on the potty... so Nate (brushing his teeth before school) and me (there as a spotter because the child does gymnastics on the throne as though it's the pommel horse at the gym) got to witness the usual dramatics.  John was not pleased his brother was there because, as he said in his most outraged tone that Nate was going to "stir my poop!"  Weird.  However, he didn't poop. Yet.

Afterwards I was brought to tears as he decided to poop on the potty (Yay!) but then not tell me (Boo!).  I was dealing with the twins so I came out to find him diaper-less and his bottom poop-smudged.  I wanted to cry.  Then I did cry.  A lot.  I spent the next hour searching for places he sat, climbed or possibly contaminated.  I found it in the most unusual places.  I thought I was part of a CSI team.  

[From Summer 2011]

There are so many moments that I think that I am overstretched beyond my capabilities... but then we make it to the end of the day with a four thriving boys tucked into their beds.

I sometimes wonder if I'll find myself in therapy one day, looking at inkblot tests and responding with answers such as: "baby poop; toddler poop; corn poop; poop that my six-year-old insisted I look at; blueberry poop; exploding diaper poop...".

And yet, even now, and especially now, there's one thing I am certain of:

A day in my life is pretty amazing.

[From June 20, 2011]

The 'quotable quote' of the weekend before last (the quote of the year?) came about in the most average moment.  Driving in the van, boys (relatively) peaceful in the backseat, Arden & I were having a conversation.  From the backseat, John pipes up:

"You guys is INSAAAANE!"

We paused, looked at each other and started to laugh.

"That's the way it is" was his quiet response.

Yup, we's insane.

***

Thursday morning's brief moment on facebook involved seeing a link to an amusing mom blog.  I read the entry about sleeping, laughed, and then clicked back to this entry about a diaper change.  I found this one amusing, too, because it rang so true to my own life and then I continued on my day.

Before afternoon naptime, my own version of this daily experience (how many poopy diapers do I change in one day???) played out in real time and I thought I would recount it as best as I can (because relating something after the fact is not that accurate and no, I don't have any photos) I think bullets might help me chronicle the sequence of events:

• Andrew, fussy and agitated, toddles over to me [begin soundtrack of baby crying].  
• I assess the need for a diaper change.
• Nate is occupied with his project [wrapping Arden's Father's Day present], John is playing with his Hot Wheels toy.  Good.
• Placing Andrew on the floor, everything falls apart.

• Unlike the blogger, I was prepared for poop (had the diaper AND wipes) [by the way, this was the pride before the fall... that night I was plunking said boys in the bath and found myself dropping a diaper to the floor and dealing with a silent but deadly poop WITHOUT wipes]; however, I wasn't prepared for the appearance of diaper rash [soundtrack of crying amplifies as I search for diaper cream]
• Like the blogger's experience, my baby is behaving like a "spastic octopus".
• In the meantime, Samuel has found Nate's Wall-E toothbrush (left out by John who was using it as a 'tool' ten minutes earlier) and comes over to me (he sees that the wipes are down) and, laughing, begins to wack Andrew on the head with the toothbrush [soundtrack of crying increases (understandably) two decibels]
• While I'm comforting Andrew, who is still poopy, Samuel takes the opportunity to start taking every. single. wipe. out. of. a. full. box. of. wipes. 
• In the meantime, John begins to call out "MOMMMMMMMMMMMMMM!  It's broken!!! MOMMMMM, I need you to fix it!!!!!!" (his Hot wheels toy needs a piece to be pushed back in. Right now.)
• Simultaneously, Nate hits a snag in his wrapping: "Mom, can you help me with this part?  See, I was able to do this corner, but I can't do this part without help.  Can you help me?  Please?"
• Me: 
• "It's okay, Andrew. 
• Samuel, NO!  
• John, please wait one moment.  
• Nate, I will be with you after I've helped Andrew with his bum"
• Andrew, being placed back on the floor, starts having a tantrum because I am A: daring to clean him up; B: trying to apply diaper cream; C: attempting to keep him still.
• Samuel takes this opportunity to pull out more wipes while John continues to call out to me (verbatim: "MOMMMMMMMMMMMMMM!  It's broken!!! MOMMMMM, I need you to fix it!!!!!!") while Nate is working out his problem by verbally processing it (voice raised over the noise), "mom, what if I do this....?"
• Meanwhile, the poop has turned into a massive mess (due to my delay and the amount of squirming Andrew has done), and I no longer have the wipe box because Samuel has moved it out of reach.  Oh, and similar to the blogger's 4 year old, John's frustration intensifies.  
• I finally get Andrew cleaned, ointmented, diapered and comforted (and if you comfort one twin, the other thinks he needs attention, so thus, Samuel got similar attention) and hurry over to John [soundtrack had stopped in silence but then resumes on a lower volume as Andrew and Samuel are annoyed that I have abandoned them to walk the 6 steps over to the couch to help out John.
• I get to my second born only to watch him successfully slip the post into position and my eldest pick up his project to proudly announce, "I'm all done!".  
• Seriously?  Seriously.

Thursday afternoon then included a brief game of apple throwing between John and Andrew; John "fishing" the babies with a carpet no slip mat (he made it into his net), John with stuff (dirt, food, poop) on his hands and then wanting to touch his toothbrush before washing his hands (I caught him in time but was beyond immensely frustrated - why does he use 1/2 a bottle of soap in one trip and then nothing at all the next?  What is with this obsession with teeth brushing on. his.own?!?), stuff (an entire water cup, salad, yogurt, crackers, playdoh, fruit, poop) being spilled on my freshly washed floors (Arden did them the night before), comforting babies who were battling each other over stuff (a spoon, a wooden spoon, a box of wipes, a bike helmet - note: no toys were in play), and Nate showing me how he can make a "penny print out of his belly button" via his magic trick involving a penny stuck in his navel which was then pushed out.

So essentially, several incidents of me thinking my head might explode, several more of irony based-laughter due to the absurdity of the situation and a sprinkling of genuine laughs at the antics.

Ultimately, I think the three year old summed it up accurately.

We is insane.

Snow globe

Before I go on, I have to say thank you for your continued encouragement and support.  I am surrounded by so much love that it's overflowing and turning into joy.  It truly is immeasurably more than I could've ever imagined.

I've gone into my inbox for the last two nights, hoping to get typing at some emails and messages - I cannot express how much I long for some more energy to get personalized updates and thank yous sent out; however, I was overwhelmed by the task at hand... so in the meantime, I am writing in the blog in order to get an update out.

It is with no small amount of gratefulness that I report that healing is happening.  I have been gaining strength on a daily basis and although I still have many miles to go, I am encouraged by each of the steps taken in this upward direction; my playlist in that healing include these three songs that have been inspirational on this journey: My Hope is in You, Sweetly Broken & Joyful, Joyful.

***

If a rock is 'just a rock' for you, I encourage you to read no further as this entry is a deep one with overtones of cheesiness and unapologetic sentiments.  However, if you enjoyed the poignancy of the line "as you wish!" in the Princess Bride, proceed... this one is for you.

***

For as long as I could remember, I have loved snow globes.  Recently, through an amazing channel, I was given the means to acquire my very own.

At first I was simply taken with the snow globe - it was a lovely thing to hold in my hands - and it brought me so much joy to see the wonder on my sons' faces as I shook it up and then set it down.

But like all things in my life, I cannot help but find symbolism in... well, everything.

In this journey I have certainly been aware of my fragility, my humanity, and my limitations.  For a brief time after a particularly challenging period on this healing journey, I considered myself to be 'the girl made of glass' as my frailness seemed to define me... from my physical condition to my emotional tsunami, I was - and am - in a place of vulnerability.  Yet, as I watched the glitter swirl and the colours change, an imprint flooded my heart: I am surrounded by love - overwhelming, overflowing, infinite love.

I also recognized how a snow globe is the most beautiful when everything is in motion.

***

I think that now that I've gotten to this point in my life - where the possibility that a condition, unseen but powerfully destructive can change everything without warning - that I have been blessed with a clarity I've never had before.  In a most evident way, I recognize so many more things that I once took for granted... aspects of my life that now have become priceless gifts.  More than that, a beautiful epiphany has hit home:

Motherhood is a miracle.

I'm not saying this in an overly sentimental way; I sincerely mean it.  I realize now from discovering epic-ness of the high stakes that I am blessed beyond my understanding.

I have been recognizing that I was functioning under a faulty entitlement perspective - my whole world was structured around the presumption that I was planning for my future - and the future of my children.  My parenting perspective was grounded in the long game.  Yes, I mothered with great love and enthusiasm, but there was a significant part of my heart that was invested in the days that lay ahead... when the 'challenging' stages (such as teething and diaper changing) were over.  Not only did my goals reflect this, I often could imagine the joy of future celebrations, graduations, and weddings.

The awakening from this perspective is undeniably painful, yet I am so grateful... I cannot express adequately the joy I have in even the most everyday interactions with these completely phenomenal children I have the privilege to mother.

Similarly, I'm not saying this as though I haven't lived my days in anything other than a carpe diem kind of way.  I have always had a general understanding of the importance of seizing the day; I think I now have a conceptualization that "seizing the day" does not mean optimizing production or experiences.  Seizing the day now means an investment of the heart - a pouring in and a pouring out - in the miracle of motherhood and in the miracle of life.

And love has been, is, and will be the means to this end.

***

Although this sounds highly sentimental - and overly optimistic - I can guarantee you that my life is not all unicorns and sparkly-happy-face-sticker ideals.  Valleys, battles, and tribulations are part and parcel of this experience.  There is tension: even though I am struggling with a medical condition, I am still a mother to four beautiful yet spirited boys aged 6, 3 and twin toddlers - a position that calls for some intense investment.  And although this is my new vision of life, it is not overly idealized in my expectations as the reality is that I am a highly fallible person.

However, I think that in this season and in light of waging battle with some of the hardest realities and sorrows I've ever faced, I am becoming more firmly entrenched in a pragmatic view of my life.

And even writing that I should say that I feel like that's a nerdy way of saying this: trials have brought perspective.

There is so much more to express on that, but here is where I delegate the task to C.S. Lewis - the poignancy of his quotes (from the selection here and from his other writings) at this point in my life leaves me... well, speechless.  

“Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make any sense. What on earth is He up to? The explanation is that He is building quite a different house from the one you thought of - throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were being made into a decent little cottage: but He is building a palace. He intends to come and live in it Himself.” 
― C.S. Lewis, Mere Christianity

Each day I am feeling God's hand working in incredible ways in this fragile life of mine and, in the reflection of the snow globe, I am starting to see a whole new me.

Thank yous and Tangibles

It has been both rough and amazing the last couple of days.  Even as I write this, I know that my time at the computer will be short this time though I'd really like to stay here and write for an age.  I'm like that, you know.

I love to write.  It is something I am compelled to do.  However, with the persistent headaches, I have found it challenging; so instead, as I rest in the dark, I have ample time to pray and, also, as I lie quietly, I have time to think of what I'd like to write should I get the chance.

Getting the chance now, I say: thank you.  Thank you for your encouragement, support, understanding and prayers.  Thank you for your kind birthday wishes and thoughtfulness.  Your kindnesses have brought tears to my eyes a thousand times over. Thank you for your responses to this blog; they have given me the motivation to continue on writing in moments like this.  Please know that I'd love to write each of you - or better yet sit down and catch up after giving you a huge hug - and I long for the day when that will be feasible.  Thank you for loving me no matter what state I am in.  I am reminded time and time again of my blessings from your kind words and gestures.  Thank you.

***

Although my birthday was a marvellous celebration, it was unlike any other I have ever had.  I will hopefully have the time someday to explain that further, but for now, the update of my journey is the following (and I'll start with the 'unfortunately' before the 'fortunately'):

The new medication isn't working.

Well, perhaps it is working in the way it is supposed to be: preventing new clots.  But there's no tangible way to tell.  The tangibles in my life have accumulated to a whole "side effect profile" where the outcomes from the drug make it challenging to function.

You see for the last week or so, I've been struggling with some pretty hefty side effects.  I had called the clotting clinic (yes, as unusual as the name sounds, there is such a thing in Edmonton), and had received mixed messages (from their reaction of: "eek, that's not good!!!  We must get you off of this!" to their callback much later of: "well, the hematologist says that you have a hypersensitivity to the medication").  I acknowledged said assessment and then asked about when I should be concerned (as I had already had a growing inclination that these were not good impacts from the drug); I was told that should it become "life threatening", I'd need to seek medical attention.   I then asked for more information about the drug as it is so new that my information from the doctor & pharmacist had been, well, minimal; I was told to "Google" it.  Oh.

There are times when I get emotional. [I'm writing this with a sort of "brouh ha ha!" laughter echoing in my head; for those of me who know my emotional nature, this is an understatement to say the least].  Nevertheless, last night felt like the impact of this condition was getting to be in the overwhelming box... the wide range of emotions flooded over me in a tidal wave.  I felt like having a tantrum.  I felt that "enough was enough!".  I needed answers.  I needed a solution.  I needed to park myself outside of this hematologist's office and be seen!

Then I took a deep breath, started to pray, and began my research.

The research was not encouraging though I will spare you all the details.  The end result was a disheartening reality: I found out more about PEs. I discovered more to rule out the possibilities that I had considered in the back of my mind about the source of my PEs (indeed, all of the scholarly research confirmed that none of the following applied to me: the birth of the twins, Mirena or DVT would have fit my circumstances for the source - incidentally, there's a whole site dedicated to thrombophilia - called, aptly, "stop the clot").  I also learned more about the problematic angles of anticoagulants - those serious possible side effects that make you question if anyone should be taking the drug.

Anyhow, to summarize: the realities all came into focus: of the serious nature of my condition of venous thromboembolism, of the unknown source (which occurs in 20% of cases), and of the serious impacts of the medicines I will be taking for my lifetime.  I was overwhelmed by the cascade of information, that if written from a different angle, would've made for a great nightmare plot.

And then, I stopped myself - again.  I know that there is nothing that I will face that is insurmountable.  I recognize how I am in a place of strength even when I am feeling overwhelmed by the circumstances.  My faith is foundational and my readings of Hebrews has made hope accessible in precisely these moments.  I am learning the working definition of perseverance.

Ah, how there have been so many steps out in faith in this process.  The short of the long of it is that I am going back to Coumadin.  Otherwise known as Warfarin, it's the anticoagulant that fluctuates in INR numbers and that requires monitoring via blood testing.  As much as that is challenging to choose this path, I am eager to get back to a place where the healing is focused on the original condition, without the additional barriers of the side effects.  After all, I am aware now, more than ever before, how much my health impacts the lives of these amazing little boys I am called to care for.

It was interesting to me, that in the midst of all the research last night, I opened my inbox to find this little treasure; I hope you get a chance to read it - I felt it was such a beautiful summary of such a piece of wisdom.  It's amazing how God gathers everything together in every way possible at exactly the precise moment.

And about that feeling of "enough was enough!"?  I've been thinking about it.  Admittedly, it's hard to sit peacefully back as the pain - a combination of residual pain and pain from the new medication - intrudes with a vengeance.  However, in order to heal, it has been essential for me to work through my emotions in order to be able to say: No matter what [here's the link to the lyrics].  But that's what it comes down to for me: the lyrics of this song ring so true to my core.

There's so much else I'd love to share but, unfortunately, I'm starting to lose my energy.  Nevertheless, I want to leave this entry on one last note: as these infuriatingly small, unseen entities of my lungs are under attack by my white blood cells, I am confident that healing is happening.  I may not see it and, in my fragility, with what I do feel, it would be logical to fall into a place of hopelessness and fear given that the only evidence I have is the result of pain and the only information I have found is the medically based reports of statistics and symptoms.  But instead, on this journey and more than ever, the verse from Hebrews 11:1 rings true for me:

Now faith is being sure of what we hope for and certain of what we do not see.

My Journey Begins

It's been a long journey.

I suppose the metaphor has been overused and I know I've used it to describe many of my experiences as an adult, but this time I see the many paths I've travelled as I look back on the months that have passed.

I will begin with a conclusion: the clots in my lungs fall under the category of unprovoked (there is no medical factor, hereditary or other, to explain the source). This means that this journey is bound to be lifelong; I will be taking preventative measures indefinitely.

What follows in the blog entry - My Journey with Pumonary Embolus - is a very lengthy, detailed account of my journey.  I hope that you will read it for the information I've included to help spread awareness about the condition of pulmonary embolism, which is fatal if left undiagnosed.  From a personal perspective, I've written about it so that you'd know where I have gone and where I am now.  Finally, I also hope that it will also help you to be encouraged to be confident to persevere in pursuing treatment for the health concerns of your family.

It is only now that I can look at the journey in an eyes-wide-open kind of way.  I have been in so many physically and emotionally fragile places throughout and I have yet to get beyond the sensation of being frail.  From the outside I look fine - in fact, from the weight loss of the condition, I possibly may even look great.  I have begun to realize that the things that aren't visible are, in fact, perhaps the most important in life.

I have to say that I am grateful for the love and support that I (and my family) have received in a thousand different ways during my recovery; I feel incredibly blessed to be so loved.  I have missed my time with those I care about and I know that I have been missed.  To be honest, I miss having the ability and the energy to have that time too.  In this healing, I am having to revise my life.  I have to consider every expenditure of energy.

You may not find me on the computer, on the phone, or at a play date.  In fact, I am thinking that this is the best time to wish you a "Merry Christmas" on facebook.  I know I am missing so much by paring down everything, but I also recognize two things: I have been told by the doctors and the literature that it will take a full year to recover from my condition and two, I have much to be thankful for - things I am not missing while I am here; sitting beside Nate as he's learning to read, watching John while he's playing with his trucks, listening to Andrew as he's learning to say "Mom", and enjoying the feel of my 'peanut', Samuel, as he hugs me with all his tiny might.

This illness has forced me to prioritize to the top three elements of my life: my husband & sons, my faith and my healing.

My Journey with Pulmonary Embolus

It is hard to start this note because I have been long thinking about my audience - my friends and family - who have been waiting for an update.  It is also hard to start writing the update because there is so much to say and I have been wondering how to begin.  [If you are hunkering down to read this now, this is a good time for you to have a cup of coffee, tea, or Diet Pepsi in hand.]

I have struggled with a condition that began in early May.  It started with sharp, shooting pain that would travel up and down my left arm.  Although I had been busy with a whole series of illnesses for the boys during the spring and hadn't been to the gym for an age, I found myself surprised when I was breathless during a walk.  The pain in my arm then progressed to pain across my chest and up into my jaw.  I lived with the intensity and frequency of pain increasing it until I wasn't able to push through it any more and, at the end of May, I sought care at the ER.  I was given four tests and then dismissed, told that it was most likely a result of anxiety.

That Friday, I was writing a note at my dining room table when the pain became so great I could no longer breathe properly.  I started to have tunnel vision and I could feel myself blacking out.  I told Nate to go and get his dad (Arden was downstairs sleeping in preparation for night shift) and I called 911.  I was sure I was having a heart attack.

The blur of the paramedics coming and another EKG and an uneventful trip to the ER with paramedics giving me platitudes was hard; I was confused as they told me that everything was fine while I knew that everything wasn't.  My humiliation of the experience was increased by an ER doctor who didn't take me seriously, nurses who suggested that I was having a panic attack, a CT tech who treated me unkindly, and after hours of waiting, another dismissal... no contact with the doctor, just a few IV removals and, this time, with me leaving the ER barefoot into the Spring night.

From that time on in the weeks that followed, I told very few of the experience and told even fewer of the pain that still remained.  No one but me knew about the fact that it still continued to cause me severe pain at times, leaving me awake at night, or forcing me to pause in activity while a wave passed.

I look back and see how I was so embarrassed by the possibility that the pain was psychologically based.  My condition is very serious - pulmonary embolisms (and other clot illnesses such as aneurysms and heart failure) are  silent killers.  The reason I had been given a CT scan was because my D-dimer test result (a blood test which measures the possibility of pulmonary embolisms) was very high. I now know that the heart attack symptoms were a reflection of my lung tissues not communicating pain and the fact that I was not getting sufficient oxygen to my heart.  This is a heavy realization.

By the end of June the pain had become almost unbearable.  Simultaneously, I had felt my heart was breaking in a hundred ways because of the other journeys I was on.  All the same, I followed through with more testing: EKGs, an echo cardiogram and a holter monitor test which observes the heart function over a 24 hour period.

I am thankful for many things, and the holter monitor's ambiguous result in the ST depression is one of them.  By the time that the result was read in August, I knew I was dying.  I hope this doesn't sound melodramatic - that is the last objective that I have.  I just knew for certain that my body could no longer maintain the intensity of the pain.  Although I grappled with this knowledge, I still had joy.  A joy I had never experienced before.  I recognized so much more now the reality of how transient our lives truly are and how essential the consideration of all things eternal is.  The life of Milo Barley had affirmed the foundations of my faith; I had been taught through his story about the hope that is to come in Heaven.

Despite this knowledge, the days were long.  It felt like I was having random heart attack symptoms from morning to the moment I was lying in bed at night - and often during the night. I'd wake up in the middle of the darkness, sweating and clutching my chest.  By suggestion of the doctor, I measured the frequency of incidents on August 17th and I noted 40: pressure, nausea, arm and leg pain, hand and feet numbness, and jaw face pain.  The waves of contraction, burning, faintness, and sharp pain between the shoulder blades would be followed by waves of exhaustion.  The pain became so unbearable that I asked my friend, Hope, to come in in a capacity of nanny for several hours on the days that Arden was working because I often found myself lying on the boys' cars couch, having the same tunnel vision and working my way into trying to function again for their sakes. 

I was losing optimism that anything was possible medically to help me.  I started researching different heart disease conditions in young women and began to consider the possibility that I was suffering from a form of microvascular angina.   I decided to see if my blood pressure was high, a reflection of this condition.  On August 19th I checked my blood pressure at the pharmacy for the third time and again was shocked by the fact it was so low.  Abnormally low: 91 over 58.  The pharmacist suggested that it was possibly anemia.  Okay, I thought; let's check it out.  I went to see my own doctor but unfortunately, he was out of town.  I went to the lab at the clinic and asked if there was any way I could just have my iron checked.  No go; I needed a requisite from a doctor.

Here is where you may have to suspend your disbelief - I know I did.  When I told others about this moment, I felt like "if I were to write this out, I'd never be able to describe it and if I were to read it, I think I'd be skeptical, to say the least".  Nonetheless, here goes: I had been praying throughout this journey - at every step.  By this point, I had been praying for many different things and most specifically, I was praying for a sign.  I didn't know what to do.  It was Arden's day off.  We discussed the low blood pressure numbers and the need for the iron test.  I was exhausted, so I went downstairs to sleep.  However, I couldn't sleep.  I laid there in the pitch dark, in extreme pain, praying.  Then, in the most amazing arc, I literally saw the light.  Really.  Then I saw my grandmother.  It was phenomenal and it also made me move.  I immediately got up and went to talk to Arden again.  Not two minutes later did we have a tap on our door and my friend, who is a physician, came in, explaining that she needed a ride to get a key as she had gotten locked out of her office.

There is nothing in life that is a coincidence.

I jokingly said that I'd trade her a ride for an iron check.  She had known about the journey and had been really concerned about my health already.  We got the key and she then gave me a check up.  I told her about my hesitation about going back to the ER.  Since we were getting together for coffee the next morning, she suggested to me that if I still wanted to go in, that we could go to the ER together.  The next morning, the pain had escalated and I could no longer feel my hands and feet.  Having her to go with me, I felt confident to finally go in.  I have since then been both immensely thankful for our friendship and deeply concerned: how did it get to the point that I needed the credibility of having her by my side to pursue treatment? Do other patients hesitate to seek out treatment because they had similar experiences at the ER?

What happened next is part of the blessing: a great triage nurse, an effective ER doctor and phenomenal Internist doctor who comes up as a locum for one week each year.  It was his last day on call.  I soon found myself in the ICU.  A few hours later, I was wheeled into the CT room; the CT tech was the same and again, annoyed to see me.  She yanked on my IVs and as I was looking up at the huge machine I couldn't help but wonder why I was there again.  I wanted to go home.  A few hours later the nurse had come in to tell me that I had what was called a pulmonary embolism.  I had no idea what that meant, but I was relieved to finally have a name for it.  Another specialist came in to take a painful blood test which comes from the vein that has blood flowing directly from my lungs.  This test was to show the size of the clot.  Hours later the Internist doctor came to my room in the ICU.  I thanked him for finding the result in his "Dr. House" way of persisting and he told me that it paid to be stubborn.  We then discussed the clot.  No, he corrected: clots.  He explained to me that this was pulmonary embolus - many clots in my lungs.

I was grateful to be alive; the number of people who die from blood clots in their hearts, lungs or brains is staggering.  My education in clots began then.  First, there was no medical treatment for the clots that I currently had.  White blood cells had to take on that work and they would work on dissolving the clots.  Second, the estimated time for recovery was approximately a year.  After the feeling of elation that I finally had a diagnosis, these two pieces of information were hard to process.  Even now, almost two months later, the pain still comes with intensity.  Third, I was put on blood thinners and admitted to the ward of the hospital.  I worked on remaining upbeat during this time and I'd try to find humour in the situation.  Instead of thinking of the discomfort of the hospital experience, the fact I was missing my boys, the noisiness, the pain of the I.Vs and the blood tests, I would try to liken it to a "spa" experience where the sound of my oxygen was a bubbling brook, the ultrasound was a gentle leg massage, the removal of my IVs were exfoliating treatments, and the blood tests were acupuncture.

My parents arrived shortly after I was released to help care for the boys - and to help take care of me - as I started my healing process.  For now my mom is back here sheltering me and then Arden will be doing the same when she's gone... I know this may seem confusing to those who know me; I have always demonstrated such independence in the past.  Yet so much has changed.  Now a fifteen minute phone conversation wears me out for several hours and the pressure of going online to see how people are doing on facebook or to answer emails seems to be overwhelming. As with many activities, there is much in the too-hard-box.  My busy household of four boys is boisterous and, even still, more than I can manage on my own; when they go to sleep at night, I too, am long ready for rest.

Coming home from the hospital involved dealing with the continuation of the excruciating pain of the clots; I've used heat, rest and a variety of different pain medications to help try to alleviate the symptoms. As I didn't want to return to the outpatient clinic, I learned how to administer my abdominal injections of another blood thinner.  Not a fan of needles, I found this challenging.

The majority of the needles were at the lab for the daily blood tests as I continued to work on getting my numbers (INR) to the ideal level (between 2 and 3).  I found myself swinging between an extremely low number (high possibility of blood clotting) to a high number (high possibility of internal bleeding). The medication to achieve this is called Warfarin, originally used as a rat poison.  Hands shaking, I'd get my mom to check my pills before I'd take them.  For example, if I had to take 7mg of Warfarin, I'd have to take 1 5mg and 2 1mg pills. I worried that I'd get my numbers wrong.  I worried that I'd drop one on the floor. My INR numbers would be impacted by anything as simple as green tea or a green salad (or anything that had a high level of vitamin K).  As for the needles, I have found it was interesting that it was harder for me when the lab techs were sympathetic - the bruises in my arms had made giving blood painful but it was easier not to think about it.

About two weeks later, I ended up in the ER again.  My pain had persisted since going home and once again had increased to an unbearable level.  Hospitalized and after being given a 'pink lady' shot and morphine, the three IVs were inserted again and more tests were ordered.  Another CT scan revealed that thankfully there were no new clots and that the clots were breaking up; but in the process, they were causing more pain as they ended up in the periphery of my lungs.  The highlight was the impromptu 'in-room house party' with my amazing friend who had come to pick me up.  I left the hospital with a trail of blood behind me (I found this funny enough at the time... one of my bandages from the IV removal was faulty).  At home, I started to feel like I was a senior citizen as my medication bottles lined up on my counter top and I'd find myself taking anywhere from 3 pills to 9 at a time.

At the end of September, Arden and I drove to Edmonton to see the specialists.  A series of 9 blood tests had been ordered to see if there was a pre-existing hereditary condition to explain the source of the clots as all other possibilities had been ruled out.  I was anxious to see the hematologist for more answers.  After a very disappointing 2.5 hour wait, I still had no answers.  We left to the next appointment - the cardiologist - and I was given the confirmation I needed that there weren't any underlying heart conditions.  After wondering for months about the condition of my heart, this was a huge relief for both of us.  I was able to have a phone consultation with the hematologist a week later.  The unfortunate news was the reality that this was a lifelong condition due to the fact that there was no evidence of a source.  The fortunate news was that there was another type of blood thinner available that would not require blood testing or regulation of INR numbers.

I switched onto my fourth anticoagulant with both excitement and trepidation.  It was hard to accept that I didn't have to control my numbers anymore.  In fact, without knowing where my "numbers" were, I'd have to go forward in faith that my blood thinness was where it needed to be.

About 24 hours into taking the anticoagulant, the side effect of nausea was becoming unbearable.  I found myself dry heaving for hours and unable to rest.  A migraine level headache began at the same time and by Wednesday, I began to become concerned as I was losing the little amount of functionality that I had regained.  Concern from the medical journal reports that the headache might indicate inter cranial bleeding (and after 4 days of the intensity of pain, I wondered if it weren't in fact something as serious as that), I sought out my doctors again.  The hematologist switched me to another anticoagulant and, thankfully the nausea stopped within 48 hours.  The headache persisted and my physician encouraged homeopathic treatments as migraine medications are not possible with my condition and the only other alternative was a cranial injection.  Thankfully, three days later, the pain was finally alleviated via the application of heat.

The emotional fallout of this experience has left me often crying rivers of tears when I thought there were none left within me; and yet, recognizing all the more now how much God is control, I take nothing for granted and hold on to unsinkable joys. 

***

I am now on the new (new-to-me and new-to-the-market), very expensive, anticoagulant. Additionally, I am taking anti-depressants, a sleeping aid, as well as my medication to help mitigate the impact of the pain from the clots. In the morning, I take one medication that has a side effect of an appetite suppressant and at night, I take another with a side effect that encourages appetite.  The sleeping aid I have been prescribed has caused me nightmares of unbelievable images - night terrors - that are nearly impossible to fight my way out of.  Although they give my body the seemingly ridiculous amount of sleep it requires, the side effect of the nightmares also terrifies me.  The medications and side-effects are much to struggle with; though through it all, I haven't lost sight that I am still here on this journey.

I am starting to learn my new normal - though I know I'm not there yet.  I am praising God for there has been much healing; I see each day as a gift.

There's also a whole new awareness now: on the positive side, I am so much more grateful for the multitude of blessings in my life; on the negative side, I am having to learn my limitations.  Some of them are taking time to work through as even the use of kitchen knives make me wary - the knowledge of how much I bleed when I am cut even a small amount has been hard to contend with.  I still wrestle with the realities of my condition - confused when even clapping enthusiastically with Samuel made the tips of my fingers bright red and numb for forty minutes afterwards.  I am refusing to live by fear, but rather to go forward with faith in spite of the moments where the unknowns threaten to overwhelm me.  I am recognizing that I began the journey unaware of how much endurance it would take to continue on.  I am working my way through these moments with hope and the assurance that this is a part of the healing process.

In each moment of this ongoing storm, I have felt the anchor holding - my faith is keeping me steadfast.  All the same, it is a hard transition; for a mother who was once able to do so much, I now find myself limited to minimal activities with the children.  It has been upsetting to not be able to do these simple things; from picking up Andrew and Samuel to going to the grocery store, I see how what once was a simple activity for me now feels like a major effort. I have humbly, yet gratefully, accepted help from some amazing people with getting my older two children to and home from school, going to park and getting to their activities.

As I am about to celebrate my 33rd birthday, I can't help but think about Bilbo Baggins celebrating his 111th.  Bilbo plans a grand celebration and then dramatically disappears, telling Gandalf that he feels like 'butter spread too thin on bread', and taking the road from the Shire.  The Lord of the Rings series has helped me through this period of my life in many, many ways.  If you haven't read it, try to take the time to watch (or re-watch) the film version.  There is something to be said about the fact that we cannot choose the times we are to live through but that we can only determine what we are going to do with the time we are given.

I see now how lengthy this is note is - I have to admit that it took a great deal of effort write it; that it took a long time to compose and that I've also been thinking about it's composition for a long time.  I am writing it not only document my condition but also because I am having to adjust to understanding my own limitations.  I've been concerned that I haven't been able to continue with my communications; please don't be upset if you feel like I'm not there for you.  I am just not able to be as this is an unfortunately disabling condition.  It has been challenging for me as I have been having to recognize that as much as I once was able to pour out into the lives of others, I am having to wait on God's provision for even - and especially for - the little things.