Gone

My SuperDan

 

Dear heart, my Daniel, born at home in a stock tank filled with water, you nestled into our family seamlessly.  Tucked into bed with me, your brother beside you and your Dad snuggled against him, you gave us one of the most beautiful moments of our lives.

And now you are gone.

Right after you were born your sisters had head lice and we spent countless hours picking nits out of their hair as you calmly sat in your car seat nearby.  Just as they loved your brother Al, and later, your sister Annie, they held you and you melted  their  hearts.  Lovely and gifted young women, even then, with far too much emotional stress to cope with.  But holding you brought them peace, as it did for anyone who knew you.

And now you are gone.

I watched you learn to walk, observed (amused) as you potty trained by watching your brother stand up to pee.  You wanted to be like him and yet you were so divinely your own.  Toddling after him (he was impossible to keep up with), sitting in Megan or Melissa’s lap to hear stories, to cuddle – always such a cuddle bug.  You gave all of your sweet self to us.  You guarded over your little sister like a lion cub, playing with her and soothing her when she fell and skinned her knees.

And now you are gone.

Every teacher, every nurse, every medical person who cared for you over the short 20 years we had you, fell in love.  How could they not?  You were made of love and it shined from you like the warm sun on a spring afternoon.  Your strength and bravery humbled us all.  You never complained and you never wallowed in self-pity.  You just went courageously from one challenge to the next, as if to say, “Bring it on bitches! You can’t break me.”

And now you are gone.

When Kevin and I were married, you walked down the steps with me, holding my hand.  You spent countless hours video gaming with him, playing scamper, telling jokes at dinner, and running to the edge of the field with your brother and sister when one of you burped at the table.  You and Kevin, your second father, who read you stories at bedtime in those tender moments before saying goodnight.

And now you are gone.

There were so many people who treasured you. Your grandparents, aunts (ring tone radio – check it out), uncles, cousins (Noah and Jonah helping you body surf in Lake Michigan) and especially Matthew Rush, your brother-in-law, who gave you such an indispensable gift by gaming with you over the internet those nights in the hospital, where you often felt so isolated and alone, after he put his children to bed, never mentioning his 4:30 a.m. wake-up call to get to work, never playing down to you.  Just talking “trash” like gamers do.  It was especially hard that you died on game night.

And now you are gone.

I fight the urge to smash every piece of medical equipment that remains in the house, the machines that both sustained and restrained you.  I am angry that A-T took you from us so soon.  When you were gone from those moments of pain and struggle, I removed each artificial device from your still body.  I wanted you wholly yourself again.  Humbly and with deep gratitude, I gave you your last bath and put on your favorite Dragonball shirt.  I promised you, my love, my heart, that I would bring you home.  Born at home, it was your deepest desire to return here before leaving us.

And now you are gone.

The agony, oh Dan, the agony of the silence, of your absence, feels unbearable.  If the depth of our grief is in any way a measure of the love we felt for you, of the unbreakable bond we shared, then know that with every beat of our hearts, with every cell that makes up these bodies, we cry out for you to return.  Just one more hug, one more joke, one more eye roll at my constant singing to you.

And now you are gone.

Be at peace darling one, and know that you are as close to us as our breath, and you will see, through the eyes of those who loved you, every precious moment of this life. We can never really be separated, we are a part of each other.

Yes, you are gone, but always, always you remain here in our hearts.  Our superhero, our Wolverine, our Dragon Dan.

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What dreams?

What dreams trouble your rest, dear heart?

Are you dreaming of the spinal tap, so long ago? The endless needle sticks for labs and iv’s? Of the Lifeflights, the ambulance rides? Are you dreaming of the surgeries and the long recoveries? The gasping for breath, reaching out your hands for air you could no longer pull into your lungs alone?

Wait. You sighed.

Maybe you are at Disney World, still able to walk. Or are you in your go-kart? (The one your brother always stole) Are you feeling Albert and Annie snuggled near you in your beds? Three darling, little ones tucked into a corner bedroom. Or maybe you are sleeping on Melissa’s shoulder on a long car trip, or being pushed on the swings by Megan? You could be sitting on your Dad’s shoulders as the fireworks in Estes Park cascade over the mountains. Or maybe you are gaming with Kevin or you know he is guarding over you in your room at the hospital?

What dreams weave through your slumber?

I lay awake and wonder, awash in memories, keeping watch.

Defying gravity

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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.

Beauty

And still there is beauty.

The blue white light of the moon slowly fading.

as the warm, yellow sun rises.

Walking out with my three companions,

the snow freezes my toes.

Thinking of my mother’s face,

reflected in those of my sisters and brother,

Her love carrying us like a wave,

into another day on this precious earth.

I bow my head in gratitude,

for all that has been given to me,

and as she would say,

for all that has been taken.

About grief

It is a grief that feels too deep for tears, and yet they fall anyway.  It is a grief so long in coming, so often felt around the edges, but now drags down the dawn into a seemingly endless darkness.  One moment agony, another apathy.  In this empty house where everything is a reminder of his absence, I pace, purposeless.  Here where he used to run across the grass, where he jumped on a trampoline, where we read him bedtime stories and kissed him goodnight.  Now he waits, in a hospital an hour away, where he has spent too much of his life, to decide how the time he has left will be spent.

We know the depth of the ocean.  We know the distance to the moon.  We know so many things,  but the enormity of this grief, this sorrow, seems as unknowable as the size of the universe.  It is equal to the infinite love I felt the first time I saw his precious face.  None of it can be quantified, the love or the loss.  There is time yet, to be with him, as he struggles for breath, the machine breathing him.  It is that time, that nurturing I might still provide, that sheds a light on this endless night.