On Fear

Things are happening, and we are moving towards Boston, closer by the day.  The momentum builds, bringing us all closer to the place where we find answers and hope, but the place I fear all the same. The decisions we are faced with, the people who can help my son, but the risk he faces with each procedure.  Its a strange feeling, the excitement wrapped in fear.  I am thankful for that place, the people, and their commitment to the pursuit of knowledge and expertise, and for the hope of a bright future for my child.  But I do fear it all the same.

Fear is not something I am accustomed to. It’s never been a companion of mine.  I'm a fairly adventurous person, and am used to living life passionately and without hesitation or reservation.  I’m not afraid of the dark, roller coasters, bungee jumping, clowns, or things that go bump in the night.  My favorite shows are dark, think Criminal Minds and the like.  I work in an environment with high stress, high liability, and the stakes couldn’t be higher- the lives of people’s children.  I even leave this place, my safety net of coworkers and physicians, and get on a helicopter or ambulance where my partner and I will try to save a baby in the field and bring it back safely for the higher level of care our hospital can provide.  Sure, I talk to new nurses on “healthy fear”, which really translates to a respect for the burden of responsibility that we bear in caring for someone’s baby.  Accountability for the care that we provide.  The duty to relentlessly pursue knowledge and experience so that we can provide these families with the highest level of care that is in our power to provide.  But this respect or “healthy fear”, that we should never lose, differs from the paralyzing fear I remember in my early days of nursing.  That freeze up, shaking hands, don’t know what to do fear that every new nurse has experienced at one time or another, when facing a threat to their patient’s life.  I still fear the loss of my tiny patients; but time and experience, however still allows for a clear head, steady hands, and critical thinking during a crisis.  This is what I am accustomed to.  Our NICU team is on the offensive, pursuing healing for tiny humans, without fear or hesitation.  But up in Boston, on the other side of the table, I feel the fear and helplessness from putting your child in the hands of another, a stranger, and asking them to protect and heal this child you cannot imagine a world without.

These days, though, fear is always there.  At times it is the dominating emotion I feel in all of this with my son.  All of the unknown, all of the possibilities, each one more terrifying than the last, paralyze me.  I look at him sometimes and it takes my breath away.  I told a friend the other day that I remember how desperate I was for answers when I had none.  Now that I have them, I just want to go back to when I didn’t know.  To the bliss that comes with ignorance.  I know I don’t really mean that, as I am so beyond thankful to have a diagnosis; and I know the knowledge that we have has enabled us in this fight.  The knowledge I have gained has made me a stronger advocate.  But it sure would be nice if fear didn’t accompany that knowledge. 

I've said before, I don't want to live in fear of his condition and what may happen.  I try to allow him the freedom to be well, and be himself, and don't keep him under the shadow of my fears.  It is dark under that shadow, I know. I don't hover over him, or helicopter parent.  I keep this fear bottled in my mind.  I try to ignore it, and am successful most of the time.  But still it looms there in the back of my mind.  Hope and fear battle in me every single day.  Even our prayer, for “today’s miracle,” reaches for the hope, rather than fear.  But I acknowledge that embedded in that prayer is the fear of tomorrow.  Why would I need to pray for a miracle of good health today if I didn’t fear him not having it tomorrow?  In my grasp for hope I even somehow feel like a coward.  But at the base of it all, I think I fear because I don’t give him fully to The One who made him.  I hold him so tight, as if I can make the right decisions, and entrust him to literally the best physicians in the world, and that it will be enough. The weight of that is so heavy.  Somehow I’ve given myself the charge to keep him well, and arrogantly and stupidly think I can do so. The nurse in me, the fixer, just keeps pushing for that, when perhaps I should let him be.  Don’t get me wrong, I will never stop advocating for the best care I can get my son, and I believe that God has given medical knowledge and technology to us for us to use for His purpose.  So I will never stop pursuing the very best for my Jake.  But maybe in my mind, I shouldn’t carry the weight so much.  Maybe I need to better entrust the life and health of my child to where it truly lies. 

I spoke of my work in the NICU.  There we push the limits of medicine every day.  We take the impossible:  lives not ready for the world they have been forced into, and give them a chance at life.  I have seen firsthand the result of medical innovation and technology.  However, I constantly see the marriage between these two, and the miraculous.  In the NICU, I never discount or discredit The One who allows for such knowledge and medical advancement, and does the miraculous even when we falter. It's such a humbling yet freeing feeling, knowing that someone bigger controls what happens, and that our hands and minds are simply tools He uses for His will.  But with my son, I somehow struggle to keep my faith where it belongs.  Why do I fight what is so freeing at work, and let it bind me at home?  I want him to be well so much, and would take on the world to make it so.  My mind realizes that I don't need to, but my heart can't put that burden down.  

Still I will pursue hope every day.  Try to surround myself with it.  On the walls of my home, around my neck, on my wrist, and even tattooed on my back.  I don’t want to live in fear, I want to believe.  Believe in the miracle of today, and the hope of another miracle tomorrow. 

It’s ridiculous when you really think about it, as I know I’m not guaranteed any of my kids.  But that bond is so strong, and we hold so tight to them; it’s so hard.  I don’t want to live in fear.  I want to celebrate the person he is every day.  My sick baby in the NICU became that little baby with the dimpled smile, who grew into little blond haired toddler who became a big brother, and now this beautiful boy, so fun and so sweet.  Mischief and joy wrapped into one.  So much entwined in this child of ours…yes his illness is woven into the fibers of his life and our family, but it does not and will not define him.  And he is there, secure in the deepest places of my heart, just as his little hand still reaches to hold securely to mine.  My hope and his future are woven together, just as both mark my back.  I am still unsteady, but as I cling to him, I pray the simultaneous release of control will allow me to love more fully.  After all, these 4 little people of mine still need holding, and it’s hard to do that will arms full of fear.