16 February 2010

Breck's Thoughts: Please don't enter here.

We weren't prepared for the fragility of Bennett's health when we learned of his illness.  But soon the reality of it hit us and we learned to cope.  We began the process of preparing for the life of our little one to be taken from us.  It would not be easy, we knew.  But we could at least prepare ourselves.

Honestly, I began that preparation long before Bennett.  Even as Brian and I parked our car at Durham Regional Hospital and began walking up to the front automatic hospital doors ready to for the 6pm induction of our first son, I prepared myself.  My hope was to bring our much anticipated baby Oliver home.  But I was keenly aware that healthy deliveries are not guaranteed.

Fortunately, Oliver's birth went wonderfully and my greatest fears did not come to pass.  But even as Bennett's day of birth drew nearer, I reminded myself again that sometimes newborns die.

I was preparing myself even in the lonely moments of sitting by myself in the admission room waiting for Brian to join me as I requested that the hospital tell me why I wasn't feeling the baby move.   "The baby may never move again," I told myself.  "And I have to be prepared for that."

But the shock I soon realized was not a stillbirth but a diagnosis: my second son was born with a genetic disease that would slowly make it impossible for him to breathe.  With no cure, his lungs would eventually prematurely stop working.  And the life of my son, as well as my family was just about to be turned upside down.

Fast forward to this moment.  I find myself conflicted over a feeling I feel so guilty for even having.  And yet, it is only right for me to acknowledge it.  It would be much easier, I think, for me to say goodbye to Bennett much easier than to do so when he is 2...or 5...or 10...or 17...or 40.  I'm prepared now.  I won't be prepared then, I know.

If I lose him now, I will lose what I never realized.  But if I lose him later, I will realize exactly what I lost.

I listen for his breaths (you don't have to put your hand on Bennett's chest - his breaths are noisy).  Is he breathing?  My heart stops - just like so many mothers of infants who ask the same thing longing to see the chest go up and down.  I hear a breath and I know he's fine.  I am able to move about my day.

But I think about the moment when I hear a breath no longer.  And my heart aches.  To live a life of such distress over small things like weight gain, fear of illness, becoming resistant to medication, breath tests, lung transplants.  I am not prepared for that...especially for the death that will follow at some point - after I have fully fallen in love, not with a baby but with a boy and hopefully a man.

I feel like I have just barely crossed the starting line.  We're only 4 months into his life - into this journey.  And yet, I want to stop and say to God,

"No! I don't want to do this!  It's going to be way to painful.  Please, don't make me enter this place.  Don't allow me to love and be forced to see this love taken away.  I can do it now...which it isn't as painful.  But each day that goes by, I love more.  And each day that goes by, Bennett is more aware, knows more about his world, feels and remembers pain more.  This isn't what I want to do."

But in this, I am reminded that THIS is what it means in Romans 8:22 when it says, "We know that the whole creation has been groaning as in the pains of childbirth right up to the present time.  Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption as sons, the redemption of our bodies."

This is what it means to long for be aware of the decay of the world.  People aren't supposed to get sick.  And people aren't supposed to die.  I am not supposed to hurt.  This isn't the way it was supposed to be.  It is not as God intended it.

Heaven is the place where the sick will be well and the dead will be alive.  There will be no pain anymore.

My tears are my own groaning as I wait for things to be made right I wait for God to fix that which is broken.

Pain, I do not like you.  I do not want to be near you.  But so I am called to love with abandonment and trust that God is good.  Only He determines my son's breaths.

And so while I groan, I will also choose to love.


  1. Thank you for writing this. It makes me gain insight into why I also feel anxiety about premature death and to realize that really, heaven will be so much better. I don't tihnk I ever longed for heaven prior to motherhood or difficult times! Great thoughts.

  2. You are going places that I can't even imagine myself going - and God is being glorified through it. You are LIVING OUT what it means to experience suffering and yet stand on the rock of Christ and trust in His plan, His truth, His goodness... Love and miss you friend!

  3. What a beautiful and courageous post. You're right - with hard things like this, it's often easier to rip off the band-aid. The pain is swift and goes away much quicker. It's difficult to recognize that, but it's all part of our human preservation. We don't ever want to hurt or feel pain, let alone see others struggle.

    Event though you're fearful of the pain you will eventually experience, you have learned to embrace it. Continue to be strong and God will continue to take care of you and your family. You continue to amaze me each and every day.

    Love you, girl!

  4. wow...this was hard to read...bringing back so many feelings I had. But thankfully Emma doesn't have to go through what he will...I pray for you often. It really isn't fair that you and Bennett have to go through this...I really really admire you. I just love how you have taken to fight are proactive...and I know that means Bennett is going to have the best life ever! Just remember to live in the moment.

  5. My baby (still a fetus, but baby to me) was diagnosed with MP on a 20 week ultrasound. The next day I had CF screening bloodwork and I am still awaiting results. Your posts have given me encourgement that I need. I believe the Lord has lead me to you. I pray for Bennett and your family every day.


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