Breath of Heaven

We just returned Sunday from our 9th trip to Boston for Jacob.  It was a good trip.  David and Jacob and I went, and we took Elena as well this time.  It was a sweet time for her and Jacob together, as it was last time when we took Asa.  I am so thankful for my kids and the love they have for each other.  His procedure was challenging as usual, but successful.  They treated the large main lesion in his chest, trying to keep it small and keep the pressure off his spine.  It is still working, as it continues to respond to treatment and shrink, though the effect is temporary and it will reroute and regrow.  But we are so thankful, that the treatments are still working.  We had a follow up appointment with the ortho specialist, who was pleased at the continued stable curvature of his spine (around 20 degrees).  They also treated the lesion in his right leg that they treated last time, that has caused him some pain, as well as a new one in his left knee that popped up just a couple weeks before the trip.  He has one in his neck that had been hurting him as well, that they were not able to treat, as it had already ruptured and there was only a blood clot remaining.  But overall, they were very pleased with how he is doing, and plan on seeing him again and treating him next fall to winter, depending on his symptoms.  He did well post-op, and we were able to be discharged that day. He recovered well over the next few days, is still having some intermittent pain, but less every day.  It was a good trip. 

 

 

I've been thinking a lot the past weeks about the past year.  Those closest to me know I have had a difficult time this fall.  I always struggle when we get close to going to Boston, but these past months have been more than that.  I have experienced depression before, and have spoken of it here.  I know this fall, that's been where I have been.  I have also spoken of the challenges I've faced this year at work.  That has played into this as well.  I have experienced more doubt, more discouragement these past 6 months than in my whole career.  I have personally been attacked and judged, regardless of my words, actions, and intentions.  In my darkness I have at one time or another doubted my hands' ability to heal, my mind's ability to teach, and my heart's ability to lead.  The depression has been crippling at times at home as well, and I am so thankful for my husband who understands and is there with me, and keeps everything running when I am incapable of doing so.  I always doubt my decisions with Jacob, and did even more so than usual in the weeks leading up, as he had more symptoms seemingly by the day.  I always feel so inadequate, and am crippled with fear of what could happen to him. 

My favorite Christmas song is "Breath of Heaven" by Amy Grant.  The past few years it has hit especially close to home.  In no way do I dare compare myself to the mother of Jesus, but I also identify with the words and feelings of this song.  So many times have I wondered if people look at my face when I'm feeling lost and wonder "if a wiser one should've had my place."  So many times I have known they should.  I see so many walk roads more difficult and heartbreaking than mine, with such grace and joy.  I struggle on with my lot, which is nothing compared to the suffering of so many.  But funny thing, there is no sliding scale on suffering, the validity of it is real to those who bear it.  I've even had friends make light of their problems in the face of mine, and I brush that off, as heartbreak is heartbreak regardless of its comparison to that of another.  But I struggle to give myself such grace and instead allow that comparison to make me doubt my ability to be Jacob's mom.  I know a wiser one should've had my place. 

More than this though, I identify with her words, begging for a "breath of heaven" to "hold me together."  I have searched so much the past few months, in my self-imposed darkness for a breath of heaven.  The beauty is that, as I am finally seeing clearer, as I look back over the past months, I see countless breaths of heaven on me and my family.  Things like a hug from a friend...a heating pad left under the covers to warm the bed for me for when I get home from work...a message of encouragement from a young nurse...texts and calls from my brother who understands firsthand how dark the darkness inside you can be.  Things like a bracelet from a friend to remind me I'm not alone no matter how far I go.  A friend walking into your messy house and just being present with you and helping you pack. Things like a team around me excitingly working hard on a project I have poured myself into, together giving a baby the best start at life.  My daughter's clear sweet voice, singing hear heart out.  The prayers of our church body, with hands laid on our son for healing.  Huge breaths of heaven, like a check in the mail from a church family not our own, but one moved to help us when our flight assistance fell through...a handwritten letter and gift from a colleague turned friend...and generosity of a stranger from simply finding their lost dog.  And breaths of heaven straight to my heart, from an anesthesiologist who heard my son wants to be a diver, and hand drew fish and bubbles on the anesthesia bag that would be used to inflate the lungs of my unconscious child.  This one who also gave him goggles to go with his "diver mask" so he wouldn't be afraid to breathe deep and go to sleep for surgery. 

For the recovery team who picked the bedspace so my son would wake up in the spot that has a diving picture on the wall next to it.  The breath of heaven in the form of seeing wiggling toes under the blanket of my still sleeping son in recovery.  So many times over the past months have I had a breath of heaven breathed into my life and heart.  Some breaths helped my family in tangible ways, and some I know simply encouraged my heart and cast light into my life. 

I don't know who all is reading this.  I've had as few as 50 people read my blog posts, and as many as several thousands.  I pray though whoever needs this one reads it.  I pray it touches a heart.  So many around us are hurting this time of year, and need their own breaths from heaven.  I pray that if you are experiencing your own season of darkness, that you will be able to see and feel the breath of heaven in your life this Christmas.  Much love to you all.
  

"Breath of heaven, light in my darkness, pour onto me your holiness, for you are holy.  Breath of heaven." 

One Year

One year ago tonight at midnight the entire medical team for our NICU walked out the door after a non-renewal of their contract by the hospital where I work.  There was more than a year of unknown before that day, and there were a lot of reasons behind this and a lot of politics and ugliness surrounding this event, none of which matter anymore.  I say they don't matter; they do, but there is no changing what was done, so in that sense, it doesn't matter, and I've tried to lay all of that to rest.  What does remain is the memories.  The friendships with people I miss every day.

This past year has been a challenge of which I never could've imagined.  I truly have thrown myself whole heartedly in trying to rebuild and be a part of my new team.  To get to know them and work in harmony.  At first it was so weird.  Like there were strangers in my house.  They were polite, but it was awkward, with neither side knowing quite how to navigate this situation we found ourselves in.  It got pretty rough very fast, with so many different people from so many different backgrounds and practices.  Collaboration was difficult...continuity impossible.

I was told one day in mid-February by one of our new providers, "You all have lost your groove.  It's ok, we'll help you get it back."  That was the most discouraging thought, that we were so misunderstood that someone could say that, with no respect or consideration for what has gone on here.  We didn't lose our groove.  We lost our team.  Let me say that again, WE LOST OUR TEAM.  And a step further, we lost our family.  I try to keep this grief hidden, out of respect for all of them, and also because there is no place for it here in the unit anymore.  But I feel the loss daily.  I once worked together with providers who valued my contribution to the team, cared enough about us to teach instead of just criticize.  We worked in a rhythm so fluidly and smoothly it appeared effortless.  We admitted with efficiency, even coded with hands moving together with the surety of each of our roles and the expectations thereof, and with the common goal of saving a life.  The more difficult things were, the more we held together.   This team knew our hearts, the passion we have for the calling that comes from our souls, the commitment to learning the best and providing it for our patients.  They knew the loyalty we had to each other, to this family that we chose, and the trust that comes with it.  They knew the things we've seen and done, the battles we've won and lost, the lives we've lived, and the family we are.  Do not misunderstand my words; in my heart, I know it is none of my new team's fault, and I try to never even give the appearance of thinking so.  But I just wanted them to understand.  Understand what it was that we lost, as it certainly was not our "groove."   I understand we won't always agree and do not expect that.  We didn't always agree with our team in the past.  But we discussed things as professionals, and worked through it.  Because truly, it is my honest desire to build this team again.  To once again work and move together in this work in a seamless, efficient way, providing the very best of care.  And I am encouraged because it is getting better. We've kept working.  We've fought, conceded things, learned new things, and day by day it is slowly getting better.  I try to see the hearts behind the differences, to the one thing that should bring us together...what's best for the babies.  When I get discouraged, I try to remember how far we've come this year.   I am so grateful for the people I've met this year. Especially those of you that have listened, given us a voice, and made an effort to teach us, THANK YOU.  The compassion you have shown us, and the care you exhibit has not gone unnoticed.  Taking the time to teach us shows you value our knowledge base and are willing to invest in it.  That means so much, and reflects your commitment to the building of this team.  Again, thank you.  Please know I am still just as committed as ever to building this team.  We have to be.  We need it, and our babies deserve it.

I have grown so much this year.  Learned what it means to advocate, how to be a professional when it isn't easy to do so.  Learned about myself and what is important.  And I will never stop fighting for what we can and should be.  I don't see my efforts for my new team as a betrayal of the one I lost.  I see it as the only way I can honor the people who taught me how to be a teammate.  I hope they would see what we are doing for our babies and be proud.  I hope every day to honor their legacy in the unit that they built.  

Today though, I don't think about that.  Today I allow myself to remember.  I remember what was lost.  I remember the dedication and the gifts of the people who built the unit I call home.  I remember their care and skill, their hard work and investment.  I remember countless meetings, deliveries, transports, admissions, codes, even losses, that we worked through together.  I remember limitless laughter and joy, and even tears and grief that we shared, both personal and professional.  I remember the people.  The people who went from strangers the 21 year old me was in awe of, to colleagues I respected, to friends I counted on, and finally to family that took a piece of my heart when they left.  I miss them.  Today I remember.  And tomorrow I'll go back in and stand beside my new team in whatever fight comes our way.  

I made this video for our going away party, many of you may have seen it, or may wish to see it again.  Here it is, and here is to the memories.  I love you all and will never forget. 

https://photos.app.goo.gl/GPvZWemSiaX4KF617

All thoughts and opinions are mine, and not reflective of any healthcare institution.  Any identifiable patients shown are with permission.  

Music credits: "Landslide" by Fleetwood Mac, "Best Days" by Graham Colton, and "Rivers and Roads" by The Head and The Heart

And here is some of my favorite memories from their going away party...