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Posts tagged ‘Child’

Defying gravity


The tide of your breath rises and falls; the ventilator, the moon, that gathers and  releases it.

Another night in the hospital. Me by your bed, gazing at you and remembering, as you lay sleeping and dreaming your dreams.

Memories come to me in silken images. You; in navy, rubber rain boots, the blue power ranger to your brother’s red, your sister’s yellow. You; walking and jumping in puddles, or sitting in your older sisters’ laps for story time and snuggles.  You; running to the end of the field and back on cool summer evenings, a price for burping at the table.  Ring tone radio, Make-A-Wish, school and yoga.

There is so much to tell of your life my dear one. Everyone loves you for your sweet disposition, your biting sarcasm, and your kind, kind heart; for your whimsical art, your love of superheroes (favorite – Wolverine), and wicked gaming skills; for the light of your smile.

It is our last night in the hospital sweetheart.  I will finally keep my promise to take you home after this long, difficult year. You have chosen not to come back to this place where we’ve spent so much of your life. I am humbled by your courage, in awe of your strength.

Your birth into this world was at home, surrounded by your family. Without knowing, we knew. No hospital. Too many months there to come, too many years. And now, again, no hospital. Your decision this time, but too soon my love, too soon.

Twenty years times twenty would not be enough time with you. My Daniel, my beloved child,

Engraved on my heart is the feel of you in my arms; as a baby, a toddler, a teen and a man. Always my son, always, my son. Defying time, defying space, defying gravity.

Love and Loss

Seeing that the last draft on this blog was in March astounds me.  Even worse, I’ve published nothing here since November of 2012.  I lost hope.  Even as I tried to grab at the tattered remnants of the gorgeous golden thread of it, my fingers slipped.  You could say it was a nervous breakdown.  Strong as my spirit can be, the last few years have been especially rough for all of us riding through the universe on our lovely mother, earth.  We are trying to cope with so many stressors at once, and our Great Mother, who supports us all has been getting sicker and sicker.  Species are disappearing, cruelty has been splashed across the news at every turn and if we love our fellow beings it seems cowardly to look away.  Day after day then, we watch the losses mount and hope that our species has enough intelligence to overcome our greed for things.  Each centimeter of wilderness that is lost costs our hearts and souls on some level.  Even as spring arrived, and the trees burst forth with blooms; even as we delighted in a family of fox that took up residence in a mound on our land, still the world seemed fallow.

My birth mother is suffering, and has been since the death of my father.  One accident or illness after another has beset her, and a frightened child took up residence within me.  It became to risky to call and hear the pain in her voice.  God bless my three sisters who would call every day, as I barely managed a weekly check-in.  Lucky enough to see her for mother’s day, I rode many hours in a car driven by a spiritual warrior to get there.  My sister, Anne, has maintained her writing throughout every crisis, every set-back, every let-down as she crusaded for the quality of each human life she offers her wisdom to, and forded the river of deep despair that seeing the gridlock in our nation’s capital has on all but the most powerful lobbies;  allowing our mother to be strafed of life, fracked/raped for the resources we can still violently drag from her depths.  Even through her fallow times, she has prevailed.  I respect her so deeply for that.

My sisters, brother and I are all trying to comprehend what life without our earthly parents will be like.  Each of us is trying to cope in our own way.  Today, rather than working against my self, I am attempting to open the vein of creativity again.  I am putting my faith in the regenerative qualities of letting that blood flow forth, knowing there is always a new supply waiting to refill it.  Loss is as much a part of life as the cry of the newborn child, fox, wolf, of any sentient being.  It cannot be denied if we want to move with the natural rhythm of this earth.  Contemplating all of this, I send you blessings, peace and Namaste‘.  The light of spirit remains however dark our surroundings may seem.  May all of our lights be bright this day, and may strength flow into you like the sap in the trees.


I spent a lot of Tuesday feeling guilty about being pampered by my sister on Monday.  What a waste of time.  Yes, some bad things happened while I wasn’t home, but good things happened too.  That Tuesday, after many phone calls, and keeping my disabled son home from school sick, I finally got some good news towards the end of the day.  He had been approved for a new nebulizer, plus a hugely expensive medicine (two actually) along with vitamins designed for him, and it was all covered by insurance.  We have to wait until Friday for the new meds and the nebulizer but it was such a relief to hear he would be getting the care he needs.  Even if I AM the one who will have to deliver that care.  The drug companies are easy to demonize (and much of it is deserved – there must be a better way to spread out the cost of research than charging thousands of dollars a month for medicines to keep children healthy, out of the hospital and ALIVE)  In this case my son will have close to 30 minutes shaved off the time he spends with a mask on his face getting medicine aerosolized and into his lungs.  That’s a big deal when you’re 14, and have been getting nebulizer treatments most of your life. I’m not sure if it was his pulmonologist who pulled off the miracle, or if it was a company willing to fight for insurance payments (okay, I’m a bit cynical) but I DO know I’m glad.  It will benefit my son, and so it will benefit me and our family as a whole.

As we celebrated Valentine’s Day Tuesday night, I tried to explain to my other two children how much it hurts to have to do things for their brother that I know he hates, like respiratory treatments (he had already left the dinner table).  Having to do things that your child hates day after day  wears you down.  My husband tries to help as much as he can, and it isn’t easy for him physically.  Between the loss of his hip years ago from a bad surgery, and the rebuild of his lumbar spine required after decades of paralysis, he’s lost some of his trunk control, so it’s easy to fall out of his manual wheelchair when he leans over to put the mask on my son’s face.  He takes the chance anyway though, because he knows it helps me.  I didn’t get any flowers, chocolates or diamonds (after three lay-offs between the two of us in the past four years?).  Instead,  I got understanding for my frustrations, a celebratory partner in our son’s medical treatment, and someone who helps me at every opportunity to lighten my load.  Considering the depression and grief that can become paralyzing at times when my son has “had it” with all the treatments, medications, and limitations on his life, I couldn’t ask for a better Valentine.  Thanks honey.  True love is not something you can get from a card – it comes from someone caring enough to  help when things get hard, to listen when you feel like you’re losing your mind, and hold you as you cry when your children have had a bad day. (or if you haven’t been able to have a child you desperately want)

Perception colors everything.  I could have stayed in a state of guilt about having time with my sister and continued the “second arrow” the Buddha talks about.  I could have stayed mired in our son’s pain, and my own, or felt resentful about not getting a flowery Valentine’s card, a token gift, or something similar.  Instead, with gentle reminders from my husband, I was able to shift my perception and that makes all the difference in how you see AND how you receive things.  Try noticing the little things your loved ones do for you, instead of pining for the big flowery gestures that can just as easily be carried about by a disengaged philanderer as a mate who truly loves you.  A late Happy Valentines Day to all.  May you love yourself (which is a huge piece of work constantly in process for me) as much as you want to be loved by others;  and may your perception be colored by an openness to miracles (or just good things happening) rather than whatever your wounded self thinks you “deserve.”  Blessings, peace, and Namaste‘.

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