Thursday, February 27, 2014

In A Nutshell... or so to speak

I had the privilege of sharing the story that God is writing with my life with the ladies of Mississauga City Baptist Church at their Christmas Tea in December 2013.  It was a humbling honour to be sure.  I am always thankful for the opportunity to share my story because it grounds me; it reminds me again of who I am - and Whose I am.  Thank you, my Emmanuel.

When I was preparing for tonight,, I was hesitant because my story doesn’t feel very “Christmas-y”.  But as I started to think more about my story and to see again how God was weaving himself in and out and around us all the time, I realized that it truly is a story of “Emmanuel - God is with us”.   There was not one time throughout this journey when I felt abandoned by God, and that is because He came at Christmastime, as a baby in a manger, to be our Emmanuel, to MY Emmanuel.  It is my prayer that as you listen to my story today, that you are able to recognize where Emmanuel is in your own life.  He is writing a story of your life too.  Watch for him.  Listen for him.

It is hard to know where to start but I will start it about 10 years ago...(don't worry, I won't go into the gory details of 10 YEARS!)  But this is it...in a nutshell...

10 years ago Andrew’s dad died suddenly. This was unexpected and very difficult but it started us on a journey of grief and loss, and letting go, that has forever shaped me.  This was followed a year or so later by the loss of our baby.  Losing a life so wanted and precious is always sad, no doubt, but as I held that little, very young life, in my hand and watched his heart stop beating, I knew that God was the creator of this miracle.  This life, and all our lives, are truly miracles. He is the creator and giver or life, but he can also take away that life; ultimately in him is life, and all life is in him. I saw Emmanuel in few minutes our little baby lived…and I knew, although it was sad, that God was with us.  I was staring at his handiwork.  How incredible is that.

Shortly after this we discovered we were pregnant with who was to be our fourth child, our Mitchell.  This brought great joy and change as the arrival of any newborn does. 3 months after Mitchell was born I awoke one morning with a growing and excruciatingly painful sore on my chin.  One thing led to another and I found myself in an isolation unit of Credit Valley Hospital, fighting an Invasive Group A strep infection that was threatening a take over of my head and neck, and ultimately my body.  I succumbed to allowing my little baby to go home without me, in the capable hands of my mom who loved him and fed him and provided for him all that I couldn’t while I was in the hospital.  That was a very difficult week.  I came to understand the pain of separation and how someone could die of a broken heart because that is what I felt like was happening; my mother’s heart was breaking being separated from my little baby who I thought needed me so much.

There was one particular night in the hospital, when I really knew it was a make it or break it night for me.  I had an Emmanuel experience that is burned in my heart and mind for ever.
I was lying there on my side, hugging my pillow supporting my IV hand so that my irrational fear of the blood running out of me instead of the medicine running into me would not come true.  It was dark - at least as dark as it can get in a busy ER ward - but at least I knew that it was nighttime.  I realized that every time I closed my eyes, I would hear the same words: How great is our God, sing with me, How great is our God, And all will see, how great, how great, is our God.

Once I realized the truth of this, I let my eyes close and gave in to the words and the truth of that song…and then He met me...
My arms which where draped around the pillow where no longer holding on to the pillow for dear life, but I was hanging on to Jesus for dear life.  He was carrying me on his back.  We were in a valley and there was a lot of light at the end of this valley.  I am sure that it was the valley of the shadow of death, or at least that is what it was to me.  We are promised, “even though I walk through the valley of the shadow of death, I will not fear, for you are with me.  Your rod and your staff, they comfort me”.  All of those things are true…He was with me, my Emmanuel was there, providing comfort and peace and teaching me to trust him with my life and the lives of those I love - my kids and my husband.

Trust…peace…comfort…come, oh come Emmanuel.

We can fast forward a few years to meet up with the story that culminated last September with Andrew’s surgery, a piece of our story when the learning to trust my Emmanuel with those I dearly loved became very real once again.

Andrew had been having odd physical symptoms for a number of months.  The intensity of these symptoms and of the search for a diagnosis ramped up and by February of 2012 we were launched into a barrage of doctor’s appointments, blood tests, CT scans, MRIs, and consultations.  For any of you who have been through a lengthy diagnosis process, you know that it is tiring and draining, and disconcerting.    With every appointment, we needed to rehash the symptoms, anything new that had changed or come up, and Andrew was always given another test requisition form for a new investigation.  His medication was changed and his diagnosis tweaked, but still he wasn’t feeling any better.

Andrew was finally diagnosed with Cushing’s Disease in July of 2012.  Cushing’s Disease was something we had not heard of before, but exists because of a small tumour on the pituitary gland that caused that very functional gland to effectively go to sleep.  This means the regulation of hormones in your body, the production of cortisol, the ability to sleep, and the ability to regulate your emotions, among many other things.  The presence of Cushing’s was causing his body to shut down.  His blood pressure was incredibly high and very difficult to control even with medication, his blood sugar levels were high and he was considered to have Cushing’s onset diabetes, eventually his kidneys were shutting down, his heart was strained, his body was swollen and puffy.  He was in discomfort and pain most of the time.  Life became hard both emotionally and physically, and was becoming harder each and every day.  

As we learned more and more about Cushing’s Disease, we realized that the emotional struggles that Andrew had been dealing with for a number of years were also closely related to the development of this tumour on his pituitary gland
Andrew had been dealing with clinical anxiety for a number of years.  This was a fluctuating mental illness but learning to live with this was an incredibly tumultuous and worrisome time for me; there were days when I didn’t know who was going to walk through the door and I would just pray that our kids, who were very young, would not demand something of their dad that he was not able to give them that day  

It was tiring and hard.  As difficult as it is living with the insecurity of a mental illness, it is also very hard to be the person who is living with the person living with a mental illness.  Instability and inconsistency and irrational thoughts are the norm at best.  Panic attacks, sleepless nights, irrational fears, illogical tears - living with a mental illness in the house is to expect the unexpected; dependability and reliability become hopes and dreams.  Yet these were the very real emotional struggles in our life and they became deeper and more frequent as Andrew’s physical health declined as well

With the confirmation of Cushing’s Disease, Andrew was scheduled to see a neurosurgeon at MacMaster hospital in Hamilton, who later scheduled pituitary surgery for January 2013.  However, over the summer his condition continued to deteriorate.  We contacted a doctor friend for a second opinion, and as God would have it, our friend works closely alongside the leading pituitary gland surgeon at Trillium Hospital.  Who knew?  God did.  My Emmanuel did.   Within a week, we were in to see Dr. Kis for the initial meeting.  He was very concerned at the progression of Andrew’s illness, and slotted him in for his next available surgical opening: September 14, 2012.    It was just over a month away from this meeting.  

The following weeks were full of preparations for surgery and life to happen in and around that.  Everyone was on board…principals, teachers, coaches, co-workers, family and friends.  Andrew, sensing the change in life to come, wrote letters to our boys and to me.  Not letters of “good bye” , but letters of blessing, of thankfulness, of gratitude, and of encouragement.  But there was little that could have prepared us for the reality of what was to hit us.  

On Friday, September 14, I took Andrew to the hospital.  We checked in and got everything in order.  We waited in the pre-op area at the hospital.  We talked quietly.  We prayed.  He cried.  But I didn’t.  I had to be strong or else everything was going to fall apart.  If I broke so would everything else.  He went into surgery and I waited in the waiting room feeling assured that all would be fine.  Eventually Dr. Kis emerged from the depths of the hospital to tell me that all was well.  He was 99.9% positive that he removed all the tumour.  He was pleased with how surgery had gone.  Andrew was in the recovery and would be moved to his room shortly.  And I could breathe.  Good. It was done.  All is good.  

The roller coaster of the next weeks brought me to my knees more than once.  It brought our families to their knees.  It brought our communities to their knees.  We were loved on by people we didn't even know.  We were surrounded by angels and armies unseen, to be sure.  But as Andrew was recovering in the Step Down unit, it was apparent that he was not recovering well.  Complications.  That's what it could be called. Complications from the surgery. On Sunday they discovered a massive pulmonary embolism straddling both arteries at his heart.  He couldn’t breathe without the oxygen mask, he almost passed out whenever he raised his head, he was vomiting, he was shivering but hot, he had a seizure which prompted the nurse to call for help, including a crash cart.  I stood at the end of his bed and watched him struggle to breathe, to stay with life, to hold on to life as the nurses worked quickly to bring him back to reality, and I wondered if this was it.  Was life as we knew it over?  Was I watching the end, the turning point to a new reality?  Emmanuel, be with me.  Let me take this all in.  

Andrew was monitored closely after this.  There were more doctors, more tests.  I remember one specific moment that afternoon when I was holding his hand as I sat beside the bed.  I put my head down on the bed and I wanted to let myself weep.  But I was so afraid that if he knew I was crying that he would know how bad things really were.  (In reality he probably knew better than I did).  So I stifled my sobs and pulled myself together. I really felt that if I let myself start to cry, I might not stop.  I think I remember this because when I go back there in my mind, I know that my Emmanuel was there…God was with me there in that hospital room in a way that I can’t explain, but I can sense.  The tears that I wanted to cry, I could have cried with him.  He gets it, he understands, and he is OK with it.  I wish I had cried - a lot.  My Emmanuel was with me, my Emmanuel was with Andrew, my Emmanuel was with our boys.  There is nothing that is hidden from him.  

HIs presence brought me strength when I thought I couldn’t go on, peace when I felt lost in the chaos, and comfort when I was consumed by the many unanswered questions.  

Our boys were supposed to come and see Andrew that night, and I wasn’t so sure he could do it.  I knew though, that if something happened to him, that they needed to see him.  Seeing their dad like this would be better than not seeing him at all.  So my mom and dad brought them and one by one they came in to see him.  He struggled to breathe and talk to them.  And honestly, they struggled to talk to him too.  He was all tubes everywhere, he had packing in his nose from the surgery which was bloodied and all swollen, he had the oxygen mask on.  He was akin to a very pale Darth Vader to them.  

That night was difficult.  It grew harder instead of easier.  They could not treat the blood clot as usual because he might bleed out in his brain from his surgical site.  There were options, but none of them seemed like good ones.  They moved him into a different room over night where he could be monitored more closely, but by morning, they decided that he needed to be in the Intensive Care Unit.  I was teaching that Monday morning, for crazy reasons, and my mom had agreed to go to the hospital to stay with him until I could get there at noon.  When she arrived there in the morning, they would not let her in to see Andrew.  They were working on him, consulting, talking, busily doing things.  The doctor decided that I should probably come, so my mom called me.  It happened to be recess time, which was good.  I answered my cell phone and my mom tells me I should come to the hospital right away.  Why? What’s happening, I say.  I don’t know, but Dr. Kis said that you should come right away.  They are moving him to the ICU.  You need to come right away.  And she started to cry.  That’s when I KNEW something was really wrong.  I grabbed my stuff from my desk, ran to the office to tell them I had to go.  GO. GO.  Are you sure you can drive?  Yes.  But I have to go.  

I remember driving there, gripping the steering wheel, praying that God would spare him until I get there.  Don’t take him until I’m there.  Hang on until I get there.  I arrived at the ICU and they took me into the little room where I met with the doctor in charge.  He told me that in order to save Andrew’s life they were going to have to do open heart surgery.  This wasn’t the best option given his post-op state; there is a great risk of him bleeding out, but they thought it was the better option.  If they did nothing, Andrew would die.  This clot was “massive” and it was causing significant strain on his heart, also putting him at risk for a heart attack.  I had to sign some papers to allow the open heart surgery, and then I was shown to his room.  There he lay, a shadow of the man he was.  The strain of the last 60 hours was evident on his face and body as he struggled to find enough oxygen with each breath.  His body was tired of fighting, especially since he went into this in such a physically weakened state due to the Cushing’s.  He acknowledged that I had arrived with a weak “hi” and squeeze of my hand , but he was confused and unsure of reality.  There was a time when he asked me if we had kids and if Arkona was real (the small town where he grew up).  He would repeat himself without realizing it.  He would ask the same questions over and over again.  Throughout this day and the next, I felt like I was rebuilding his life over and over again.  I wondered with an anxious beat of my heart, if this was to be my new reality.  Was his brain damaged and changed forever?  Would I need to live with the uncertainty of who he is each day? How was I possibly going to mother my boys to continue to love their father who wasn’t even sure they existed? 

But what if he dies?  What if he dies??  There were so many questions.  How will I mother my boys through life without him?  Emmanuel.  Oh yeah.  God is with us.  Emmanuel came as a baby at Christmastime to be with us…all through our life.  He came to journey with us through the depths of despair, the cavalcade of questions, and the myriad of uncertainty.  That is the good news of Christmas.  Emmanuel came so that we do not have to journey alone.  He is with us.  GOD is WITH us.  He doesn’t leave us to suffer on our own, to figure out the answers to the questions that our human hearts and minds make up.  He walks along side us, our Emmanuel.  

So, the good news of this story is that Andrew is healed and is recovering.  He is actually mostly recovered, but the healing from the Cushing’s itself can take up to 18 months to 2 years as his body adjusted to know longer having an inordinate amount of cortisol causing it to function in overdrive. In the end, the doctors decided to attempt a catheter approach to treating the clot, which they thought was much less invasive than open heart surgery, and although it brought some risks along with it, they wanted to try this first. We are very thankful that it worked.  All in all, he had a 3 week hospital stay, spent a day at home and had to go back to the hospital, but since being discharged he has been at home, healing, getting stronger each day.  

This story has some tenuous times, to be sure, and Andrew has his own Emmanuel encounters to tell, but I have stretched this out long enough.  Now our boys are in Grades 9, 8, 5, and 2.  They are active and busy, and they are enjoying having their dad around to coach them in hockey and baseball,  but especially in life.  They too, have seen that Emmanuel is with us.  It has been my prayer for them all along that the uncertainty and difficulty of this time has been strengthening for them and not weakening; that they have been able to see God in a way that others have not; that it leads them closer to him, their Emmanuel.  And that they realize this as the gift it can be into their lives.  I believe all things, good and bad, are a gift from God.  When we allow Emmanuel to journey with us in our struggles, to mould us and shape us to become more like our Saviour, that is a gift.  That is the gift of the Emmanuel baby at Christmas time.  God is with us.  Look for him.  Seek him out as the wise men did.  Seek him and you will find him because he is with you. Journeying with you.  Your Emmanuel.


Come, oh come, Emmanuel.  

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