Jilly Brandon

I wait….I wonder…I lay awake and my mind travels afar off in this darkness of the night.  The moon hangs “like a fingernail” against the impossible blackness.  It is only a slice of moon, but it illuminates so gracefully the void in such a pretty arch.  I stare out my window, and my thoughts turn as they very often do to my daughter sleeping in the next room.  My husband has lovingly slept on her floor cuddled in her blankets atop an air mattress.  He needs to be near her..she is like that.  She brings this  incredible comfort to us…When she is sickly we yearn to give her this comfort.  We feel that we fall short.  It is always a guessing game with her, and as her mother and Father, we are especially vulnerable to the fact that we don’t know what hurts…oh how that just kills us.  When your child hurts, you need to know what is ailing, “how can I make it better?” You typically ask?  Well there is no making it better for her, or us, there is just this complex guessing game..the wondering if you will get it right, will you be able to ease the suffering?How does one reconcile this life of your disabled, and now sickly child?  How do I be gracious to her, offer her dignity?  These questions plague me..I want to do right by her…I know her life means something, it is a blessing..she is a treasure..but the constant struggle she endures is simply beyond my comprehension.  It is hard to find rest..solace, when these things plague your mind.  I have to release her..set her free..in my mind and heart.  Her life has been such a gift to me.  I am so brought low, daily, really more often than that, to acknowledge we were destined to be together.  We were meant to be Mother and daughter along this path,,,one so often fraught with extreme heartache and pain…it is just life..sacred to the fullest…and I marvel at the grand teacher that she is.  Who knew that so much could be felt and experienced together without even breathing one word.  As I’ve stated before..I long to hear her thoughts…I know I would be blown away by what she will say…I yearn for the day when she will walk, run, dance, laugh out loud and continuously, and I will hear her say “Mamma.”  Oh, and when she sings..what will that melody sound like ?….it will sound perfect to me…and just what I would picture the heavenly angelic choir to sound like.  Will she wear flowers in her hair?….She will be mischievous, and funny…hopefully not with the wacky sense of humor as that of her parents, but then we will bust a gut together…and we will roll amongst the green cool grass, smell the outdoors, ( her favorite place,) and just ..be..be happy…content..we will forgive..and be forgiven…we will know one another fully, and completely…of this I dream…..and I wait…and I pray…and I wait some more….

This photo above is so absolutely precious to me….this is my husband at his best I think…He is so tender with her..He fights for her dignity and he is a warrior and ready to do battle against any force that would stand in his path.  His deep and desperate love for her is wavering.  His heart is breaking as she struggles…his care for her undeniable.  Oh how our loved ones make us hurt.  That quote, ” better to have loved and lost, then to never have loved at all..”  I’m on the fence about this one…the powerlessness you feel when someone you love is disabled, diseased, is beyond comprehension.  It literally could eat you up alive..piece by piece.  How do we cope with this…continually?  I do not know except to just crawl gingerly ahead little by little, feeling our way  along this rocky terrain that is our lives..

Love is that things that draws us…captures us..and yes often can destroy us, and maim us with its incredible power…really it is that feeling which we live for, hope for, and yes would certainly die for…without it we are certain to be destitute.

Give me the grace to acknowledge my finiteness in this thing…to know it has been given to me..to all of us, but we need so much courage and resolve to hang on when desperate times come, not allow ourselves to be swallowed up by the uncertainty  of this thing, which creates fear and of course anger, and much pain.  Is there a way to live and grieve well?  I do not know, but I am trying…to not be consumed.

i love this quote by Henri Nouwen…

“Lifting the cup is offering a blessing.  The cup of sorrow and joy, when lifted for others, to life, becomes the cup of blessings.”

i also love this..”The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled.  For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers.”

M. Scott Peck

How can it be..this great love that will not let us go…that lifts us up so, and brings us low…so infinite in its power…we cannot resist..we yearn to be held..to be sheltered…all of us I think deep down on our hearts, want to just let ourselves fall…if only we could be sure that we are caught, held..and embraced…this is universal..to be protected…encapsulated..to find a perfect peace for our ramblings, something to bring an order to our disordered minds…anything…we feel desperate…and so we cry out..or  I certainly cry out..”where are you God?”… “Be near to me….I am afraid…I need you..do not you dare be silent to me!”  I abhor the “silent treatment.”  I have the hardest time being quiet…ever….so many thoughts are continually filling my head…I need to talk..it’s like oxygen to me…this is perhaps why taking care of and loving my daughter who does not speak tortures me so thoroughly.  I need my family, my friends and my God..I need them to converse with me, share with me…let me know that somehow, this will be ok….even if it truly will not…at least not for an extremely long time.

“Any dance of celebration must weave both the sorrows and the blessings into a joyful step…To heal is to let the Holy Spirit call me to dance, to believe again, even amid my pain, that Gid will orchestrate and guide my life.”   Henri Nouwen

I do really believe we will dance again..we will find a way…because that is what we are called to do..this pays homage to life I think…and so we hope…we do press on…our hearts are softened, and we acknowledge our finiteness, and ever so tenderly..possibly we are held…..so softly as to not completely realize if it is truth or fiction…..