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Posts from the ‘crisis’ Category

Accepting what is.

There are times when it feels like I’m living life on a razor thin edge between sanity and complete shut-down.  Catatonia – that’s  what it feels like I’m heading for at times.  I don’t know how to have any hopes or dreams anymore.  My son has this awful neurodegenerative condition, with an immune deficiency and has already had to accept losing his ability to walk, and do a lot of things he’d like to independently.  He couldn’t eat enough to keep his weight adequate to grow, so he had  to have a tube placed in his small intestine last summer for feedings.  All had been going pretty well, but now his abdominal organs seem to be in revolt and I don’t know if it’s a viral infection (like the docs are hoping) that will be self-limiting, or if it’s cancer.  He’s had a death sentence hanging over his head since he was 2 1/2, and waiting for the other shoe to drop has pretty much robbed me of my physical and mental health.  I accept that as much as I can, but I want to be at the top of my game for him.   Trauma and drama were the key words in my family  growing up, and my nervous system is now fried and seems unwilling or unable to handle witnessing/experiencing the agonizing pain he is often in.  Watching my son suffer because of the constant tests he needs, the IV’s that he hates more than anything, having this HUGE catheter in his arm so he can get TPN (total parenteral nutrition) basically having all his food dripped in through a large blood vessel, and only allowed limited amounts of clear liquids by mouth.  The j-tube sits on his abdomen without activity these days, and getting that put in was an ordeal of proportions I cannot begin to describe for him.  The “why him? why us?” question has long been replaced by “how”?   How does a person keep going day after day watching their child suffer, doing the best she/he can to make it better and barely making a dent, and not go out of your mind with guilt, sadness, and the pain of watching his pain?  I know I need to accept what is, but I just don’t know how.  All of it seems so crazy and random.  Many people have worse situations they are coping with, so I guess trying to take it minute by minute is key.  Accepting what is when you find it unacceptable – that’s what I’m trying to come to terms with.  If it was all happening to me, that would be one thing, but my child?  For that matter, any child?

The first noble truth is that the suffering of birth, old age, sickness and death is unavoidable.  That’s a pretty tough truth to make peace with.  I recently listened to an interview with Adyashanti on Buddhist Geeks (, and he discussed a form of writing where you put down only what you know, with that inside certainty kind of knowing, to be true.  None of the explanations from the tradition I was raised in made sense or felt true in the way he talked about when my son was diagnosed.  It was the first step away from a belief system that had always been problematic for me.  Years have gone by as I’ve searched for something else to help me find acceptance with the way life is.  That search continues, and seems to keep bringing me back to the Bodhi tree.  Helping my son on his journey may begin there too.  It’s his suffering, his life, that I most want to help with.  It’s also his suffering, his life, that I feel least capable of doing anything about.

In the hospital again.

Love is a painful process.   Obvious, not new information, but as real as crawling across the overflow of needles from the sharps boxes on your bare hands and knees when you are staying with your sick child.  I consider myself incredibly lucky, because my husband and I trust the surgeon who is in charge of what is highest and most important – Daniel’s life.  I know that when he makes a decision he weighs a hundred, maybe a thousand, different details of how what he recommends to us will affect Daniel, and our family.

I can no longer count the number of nights I’ve spent laying next to Daniel, either in his hospital bed with him, or next to him – weeping my love for him onto the pillow between us with each tortured beat of my heart.  Trying to keep the sobs silent,  so he can sleep.  My precious, beloved Daniel.  The boy with the perfect home birth.  No one could have convinced me that I would give birth at home on my hands and knees in a tub of warm water with a midwife watching my infant’s perfect peach-fuzz head crown as God only knows what else was emerging from my wide pregnant behind at the same time.

I was brought into the world already bound by a complicated contract that involved “saving my mother’s life” (her words, repeatedly over the years, not mine) her perfect, precious shield when the woman my father was having an affair with at the time showed up at our door to inform my mother of their relationship.  This type of thing continued, continues to this day, as my father slips away in his dementia.  Whatever my parents believed about love seems alien, if anything,  in comparison to what I feel for Daniel.

We drifted for hours in that birthing tub, as the midwife patiently kept warming the water for us, lost in the mystery of what we had just experienced together.  We were hypnotized, transported  to a place of such intricate, utterly natural, beauty that neither of us could bring ourselves to break the spell.  I certainly couldn’t.  You nursed on and off, amazed, comforted, eyes so wide-open and blue it was easy to disappear into them, to lose time, immersed in a mystery far beyond anything I’d known before.

Now, since your second birthday, I’ve been feeling the clock tick down the moments of our time together, wondering how a heart can still function when it is  broken time after time after time.  Each decision made regarding your care weighed down by the unbearable guilt of knowing that it will take pain, pain I’m choosing to allow you to go through, that I cannot take upon myself instead, to keep you with me for a few more ticks of that damned clock.  I wonder too, how long your will to live can withstand the tests you hate so damned much.  It would be one thing if you wrote beautiful poems that inspired others, and found meaning in your suffering, but we haven’t been that lucky my love.  For the most part, what you’ve found from your suffering has been only that, suffering.  Not that you don’t recover, of course you’re resilient, but sometimes you cannot hide the accusation in your eyes, dear one, “Another poke Mom?  Another procedure, REALLY Mom?  This is the bargain I consented to in the tub 12 years ago when everything was soft, even the light, and warm; all rounded edges with no sharp corners, the hardest part of it all the nub of your nipple waiting for the suck of  my cupid’s bow mouth, to release the sweetness of your colostrum and your milk to fill what I didn’t even know as hunger yet?”

Daniel, my love, it was never my intent to violate the sanctity of those moments.  My breasts still ache with emptiness, useless to you now, no longer conveyors of comfort, but rather a mystifying remnant of a part of our relationship that ended long ago, and now do little but absorb the wretched sobs torn from your fearful lips, sometimes absorbing the blows of your young man’s fists, saying, “No, damn you, No!!”  “This isn’t what you pledged to me early in that misty morning of September 10, 1997!  I want THAT life back – the one we thought we had been given, the one with years of happiness and adolescent rejection and slow reintegration until the day I handed you my own child, the day I could acknowledge what we both thought we had forged during those months and hours of pregnancy and birth, and I could witness YOUR tears and know that some circle, some cycle had come round, had come round right.”

That is not the future we have though.  You know I am waiting for you Mom, back in our hospital bed, to do the best you can to salvage what is left to us.  As always, with a heavy heart, I will return to you beloved Daniel and at least do all I can to make something of beauty from what the random twist of genetics stole from us the day you were conceived.  Whatever the pain still in store, whatever the suffering still to bear, the magic we had those first few hours can never be taken from us.  And I will carry that magic, whenever you can’t, for both of us, for as long as that twisted, sadistic clock gives us in ticks and tocks.  We are still that mystery, imperfect for certain, of mother and son.  Our lives give honor to that, and it is with honor, with the deepest love and respect, that I will return to you now.  You are my love, you are my life, we are who we are, and there is something of honor in each moment we live together.

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