Striving For The Summit

As I indicated in my previous post, despite the important victory on Friday, Nicole still has a very hard battle ahead of her.  When they took Nicole off the ventilator on Friday, they originally put her on CPAP, but within about 12 hours, she needed more support, and they put her on BiPAP.  The BiPAP settings are about as high as they can go, so the only alternative from here would be back to the ventilator.  We have instructed doctors that we will not intubate her again.  We have also instructed them not to intervene in the event of cardiac arrest.  The doctors feel her heart is doing ok, but Nicole remains in a hard place, and the long battle is exhausting her.  The doctors don't have a good explanation for her current respiratory challenge.  They have been weaning the Milrinone (heart medicine), and plan to see how her heart looks again on Tuesday.  They are increasing the steroid which they had previously tapered since Friday, in hopes that her respiratory issues are GVHD related.

The truth is, today has been a very difficult day.  I have written about it, but Cathy and I cannot share it at this time - later perhaps, but not now; it is just too close, too raw right now.

We have travelled the path with Nicole long enough that we have learned that climbing out from the bottom of the low valley back up to the mountain peak is difficult, and the path takes many twists and turns along the way.  Sometimes much of the elevation that was just gained is immediately lost for a time as we press forward and follow the path to the summit.

Our journey through mortality is physically, emotionally, and spiritually taxing, and in order to reach the summit, we must stop from time to time to catch our breath, take nourishment, and drink deeply from the Fountain of Living Water.  The Lord also invites us to pause from time to time and look upon the beautiful vistas that surround us, and to take pleasure as we look back on the path we have travelled to get to where we are.  He also invites us to look forward with an eye of faith to the ever more expansive views that lay ahead of us as we continue our upward climb.  "...as it is written, Eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him."  (1 Corinthians 2:9).  True joy and lasting happiness are gifts from God.  Happiness comes from within, not from external things.  Real happiness comes to us as we strive to "live by every word that proceedeth forth from the mouth of God" (see Matthew 4:4, Doctrine and Covenants 84:45), and in no other way.

Elder Richard G. Scott, a man who is familiar with affliction, familiar with loss, said, "Sadness, disappointment, and severe challenge are events in life, not life itself. I do not minimize how hard some of these events are. They can extend over a long period of time, but they should not be allowed to become the confining center of everything you do. The Lord inspired Lehi to declare the fundamental truth, 'Men are, that they might have joy.'”  (https://www.lds.org/general-conference/1996/04/finding-joy-in-life?lang=eng)

We have been strengthened often by the Spirit of God since Nicole was first diagnosed with leukemia; and there have many times when that Divine presence has been strongly felt in her hospital room.  However, last weekend, the Spirit of God rested so powerfully upon Nicole's hospital room that for a time it was transformed into a temple, and all who entered stood on sacred ground.  There are feelings in my heart that I cannot express - the words just aren't there.  I know that this is true of Cathy as well, even more so than for me, I think - who can plumb the depths of a mother's heart?  I pray that God will etch these feelings so deeply upon our hearts and minds that they will remain "present" with us, undimmed as time passes on.

I know that our Heavenly Father is mindful of Nicole, and that He loves her with a love far greater than I can understand.  That knowledge, borne of the Holy Ghost, sustains me through the present sorrow of our daughter's suffering.