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Caring for yourself.

Lately I’ve been realizing there are quite a few ways you can kill yourself without slitting your wrists or turning the gas on in the garage.  People smoke themselves to death, drink themselves to death, or don’t take care of their health.  Some people overeat, or eat a lot of the wrong things, (like foods high in the bad kinds of fat), don’t exercise or conversely become anorexic or bulimic, and/or addicted to exercise.  You can live a high stress lifestyle, but not find adequate ways to cope with it, so it builds and builds and your blood pressure starts rising higher and higher until you have a stroke.  These are just some of the less obvious ways you can take your own life.

I mention Tara Brach in my blog fairly often.  She is full of wisdom, and wit.  In one of her podcasts she talks about “the not beautiful”, the habits we fell into during our childhood or later in our lives to cope with stress that didn’t look beautiful to the rest of the world.  As a psychotherapist and a Buddhist teacher, she tries to help people untangle the complex webbing that led them to cope in whatever ways they do that is not serving them well anymore.  In a sense she is saving people’s lives. That doesn’t mean it’s easy though, and it definitely doesn’t happen overnight.

“False refuge” is another term she uses to describe ways of coping that end up harming us.  Rather than helping us reach a place of peace and acceptance, they numb us to feelings we don’t want to or can’t cope with at the time. (either because we’re too young, or there might be severe repercussions for allowing our feelings to show)  One of the reasons I like listening to her so much as a teacher is that she doesn’t present any “magic” or “easy” cures.  She is incredibly compassionate and urges us, along with meditations to help us get there, to be compassionate to ourselves.  She challenges us to look deeply, under what may be layers of feelings we haven’t wanted to face.  She asks us to care for ourselves enough to explore our “not beautiful” ways of coping and forgive both the people who may have led to their creation, and ourselves.  Tara is not asking us to be self-centered, but to spend time meditating, leading us toward self-compassion, self-love, and self-understanding which are the foundation for having compassion, love and understanding for others.

I think about all the soldiers coming back from our wars who’ve been devastated both by what they’ve seen, and what they’ve had to do.  On top of that they may be coping with traumatic brain injuries, or amputations, bodies that may not seem like their own anymore. Nightmares, feeling separate from others because who can understand what you’re feeling unless they’ve gone through it themselves?  All the while you were told of the nobility of your service to your country, and it was noble.  The memories of the bodies of friends, women, men and children, blown apart – I cannot imagine the images you have to carry in your minds.  I do know I am thankful you were there for your fellow countrymen and women when you were called and went far above and beyond what should have been expected of anyone.  When it feels like the countrymen you went through this hell to protect aren’t really paying attention anymore, that they’ve “changed channels” in a sense, it must make you wonder if it was all worth it.  I admire you for your service, am so sorry for your losses, and pray with all my being that you will heal as time goes on.

My path is very different, but heart wrenching on another level.  I am watching my son declining regardless of all efforts to try and keep his illness at bay.  He’s never without a cough, but as another young man with A-T is being trached in an ICU in Texas, Dan’s cough is getting more congested and full.  I’m concerned that he may be aspirating more, both of which are going to require a visit to his pulmonologist and a discussion about quality of life.  If he has another swallow test and is aspirating more, do we take away the small pleasure he gets from eating?  Each pneumonia he gets causes more fibrosis in his lungs, and as his beard is sprouting and his mustache filling in, his telangiectasia’s spread just like the spider veins they’re named for.  He has a red, bumpy rash all over his arms, chest and the tops of his thighs called Keratosis pillaris, and nothing is helping it go away.  The crappy power chair we received has a horrible cushion that makes him sweat, and he has frequent yeast infections in his groin, and mouth (because of the nebulized steroids he’s on for his lungs).  All the things I have to do to even try to make these things better he hates but there is no one else to provide his care but me.  Transferring him is getting harder and harder as he grows taller and puts on weight, which are both good things.  I’ve gone through so many deaths in our A-T family, and each child who dies causes unbearable grief to ripple through our lives.  Yet going without communication to these families is inconceivable to me.  Even if all I can do is pray, I want to be doing that.  I want to share in the joys too, like one of our kids being named Little Miss Wheelchair for the State of Texas. ( You have to take the sadness along with the elation.

This post started out on a rather gloomy note, although I stand by what I said.  We who are traumatized, have PTSD, anxiety, depression – we have to find ways to care for ourselves as we care for our loved ones.  It isn’t easy, and it’s hard to find time, but some how we have to give ourselves compassion so there is something left for us to give the people who need us.  It’s hard to find comfort from hugging an empty shell.  Ideas are always welcomed, especially inexpensive ones.

May your life be filled with peace and blessings.  Namaste’.

My SuperDan

Dan the SuperMan

How do you mourn?

I would love to hear feedback from anyone who happens to read my blog about the question that serves as it’s title.  Some losses are immediate and final – for example the death of a parent.  Other losses just go on and on, like looking at the sweet face of my middle child every day and not knowing how to mourn what has been taken from him by the roll of the genetic dice.  Finding something as simple as a pair of pants he can work with is like trying to climb Everest.  No kid wants to look like he’s wearing disability clothes and at the same time, my darling son is wise enough to realize that if the waist doesn’t have elastic (so he can pull them down), he’s not going to be unbuttoning metal buttons or even unzipping a metal zipper on a “rockin” pair of jeans.  Neither of us want it to be that way, but that’s the way it is.  I have sensitive children, whether through genetics or from them watching my own reactions to things that come up in life.  We’re working with sweatpants for now, and it’s better (obviously) than when my husband was paralyzed around 1972.  On a scale of 0-10 in mourning this is nowhere near a 10, but this is just one issue that we have to confront.  Watching the world fall apart (seemingly) gritting our teeth through another lay off (my husband’s 2nd in three years) is much more frightening and painful.  We’ll find a solution to the clothing issue, but the lay-off, the political climate that went from hope to despair over the course of the past four years, recovering from surgery, and coping with the isolation that no one tells you about when you get a diagnosis that makes your child “special”; those are deeper cuts to the fabric of the self.

Personality has a lot to do with mourning as well, some people are better at picking themselves up and moving forward.  Their feet don’t seem to get stuck in the tarry “gunk” that sucks some of us down.  I tend toward getting stuck through a combination of genetics and the way I was raised.  Because of that, I would love to read your stories of getting over and past ongoing mourning, the kind that is a wound that never completely heals.  The most basic comfort is still having my son to hug and hold, his humor that surprises and delights us, crying together over losses, uncountable moments we experience each day.  On dark days , your suggestions may help in ways you can’t know, nor can I, yet.  I hope others may be helped as well.  This feels like a hemorrhage of grief, that slows down at times, but is gushing again before I realize it.

May your pains be bearable; may the sun come out after rain and startle you with the beauty of a double rainbow, may good news outweigh bad, and may you feel whole; held safely by a universe unimaginable in its complexity, majesty and vast distances.

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.

Losing battles

Confronting the reality of my son’s condition as fatal is a battle that has taken me to the brink of insanity over and over again.  Sometimes the grief is so heavy that I don’t think I can bear it another second.  Then Dan will cough or crack one of his jokes that make me howl with laughter and I’m back in the moment with him.  As difficult as it is for me, I realize it’s even harder for Daniel, and that helps me set my own grief aside.

The summer before Daniel started third grade, we had to confront the reality that his days of walking independently were over.  My husband, Kevin, had devised a “punishment” for rude behavior, like burping as loud as you possibly could at the dinner table – a given with boys.  The rule was that if you burped, you had to run out to the edge of our yard and back.  We had watched Dan run out in the field with his brother and sister (because inevitably one child burping leads to another, like yawning does) wobbly but holding his own.  They would shout with laughter and fly across the grass, damp with evening dew, Kevin yelling “faster, faster.”  Dan had started to get unstable, and couldn’t make his legs work the way he wanted them to.  He fell if there was nothing to hold onto, so he started having to stay at the table with us, and when school started he had to use a wheelchair.  He would break our hearts, saying “I wish I could still walk” in a tremulous voice when his siblings would run out into the yard, and I would scoop him up on my back and try to be his legs.  We knew it wasn’t the same, but he would laugh and seem like a child again for a few minutes.

This summer it was the battle to keep him eating that we lost.  It started out as several bouts of pneumonia, close together, and a week as an inpatient on the pediatric rehab unit.  He hadn’t been gaining weight, had stayed below 60 lbs. for close to two years.  We had talked about having a feeding tube put in his stomach to supplement his meager appetite, complicated by tremors in his hands that made his food fly off the fork.  He’d been great about letting me help him eat, but the energy it required just to chew and swallow took so much out of him there was no way he could make any gains in pounds.  We decided to get as many tests out of the way as we could while he was in the hospital, so he had a gastric emptying test and a swallow test.  His gastric emptying test showed delays and although his swallow was found to be completely “normal” according to the speech therapist, he had a problem with something called his vallecula.  Somehow, he had lost sensation in his vallecula, so if food or liquid (including saliva or mucous) pooled there he didn’t feel it and it would slide right down his trachea and into his lungs.  After the test was over, an occupational therapist took us to a private room and told us (including Daniel) that while she was being conservative, she had to recommend that he not receive anything by mouth from that day forward.  I was in shock.  This possibility had never entered my mind.  Dan was exhausted by this time, and it was hard to know how much he took in.  I had a sense of deja vu, as if I was back in the examining room at Johns-Hopkins the day he had been officially diagnosed with A-T.  The doctor’s had to keep repeating that Dan had it.  My sweet, healthy -looking 2 & 1/2 year-old son had a fatal genetic condition that no one in either  family (mine or my ex-husband’s) had ever heard of or been diagnosed with.  It was true though, no matter how much I didn’t want it to be.  Something short-circuited in my nervous system that day, the result of an adrenaline overload or an implosion of emotion that couldn’t be categorized. (it was eventually diagnosed as fibromyalgia and panic attacks, but that’s another story)

Back in the little room, sitting in child-sized chairs and holding Daniel so he could rest, the O.T. asked if we had any questions.  My mind had gone numb, and I honestly don’t remember if I asked anything or not.  By the end of the week, Daniel had a tube in his nose that went down into his jejunum and two weeks after that he had surgery to have a permanent j-tube put in his abdomen.  It felt like he was being tortured, and I was forced to be a participant.

This has been an unbelievably difficult adjustment.  Food is a huge part of life, and nourishing my children nutritionally is an integral part of being their mother.  Every aspect of eating from shopping for food, (Oh, Dan would LOVE that) to making school lunches, (Al and Annie like ham, Dan likes chicken) to planning dinner and setting the table (we need five place settings – oh, right we only need four) reminds me that things have changed for Dan, for all of us.  He keeps asking “what will I do at school during lunch?” and I don’t really know how to answer.  We still sit together as a family for dinner, and I suppose the silver lining is that Dan never really enjoyed eating that much anyway.  Most of the time it was more of a chore for him than anything.  He’s also finally gaining weight, which is a blessing, because he had started looking skeletal and we worried that any illness could take him from us because he had no reserves to fight it off with.  As with much of what has happened, it’s not simply win or lose, it’s compromise, letting go, and releasing expectations whether catastrophic or miraculous.  It’s doing my best to love Dan without limit every moment we have, and surround him with others who will do the same when we are apart.  It’s also harder than I ever could have imagined almost a decade ago when the doctor’s diagnosed his condition, and added a realization of what is really precious about life.  Whether that counts as winning or losing, I don’t know.  The analogy of life as a series of battles was already worn and tired before I typed it into the subject box on this post several days ago.  That’s reason enough to stop thinking about things that way.

Writer envy

I spend almost no time at all on my writing.  I read about writing incessantly, I read in my genre voraciously, and visit my favorite author’s websites obsessively.  All time that should be spent – wait for it – WRITING!!!  I learned this week that Nora Roberts’ rule for writing is “butt in chair” (or something close to that).  It’s a great rule and one I’d like to say I follow.  The only problem I have with it is that when my butt is in my chair, I’m looking at a computer screen.  My computer happens to be connected to the internet, which is a good thing because otherwise you wouldn’t be reading my blog!  It can also add to the distractions that keep me from writing, which are infinite on the ‘net without even starting on those in my home life.  So, what’s a budding, non-published author to do?  Make Nora’s motto my own, “butt in chair, browser in your blog (or word processing software)!”  Thousands of  ideas are running around in my brain, and as they come up I tend to ignore them because I let the editor in my brain censor me or the real life crises that tend to make up my day take over.  There has to be a way to transcend this, because two writers I admire started their careers because:  a.) one was up in the night with nothing left in the house to read and started to write something she would want to read, and b.) one was stuck in a blizzard with no way out of her house, and small children to entertain.

It would be easy to say I have more challenges than most because my now 11-yr-old son Daniel was diagnosed with a fatal, neuro-degenerative disorder when he was 2 & 1/2 years old.  That pretty much blew my life to hell for the next decade.   He’s had more hospitalizations than I can count, and challenged me as a mother in ways I would never have thought I could survive.  As exhausting as it gets, all he has to do is smile and every effort I make seems pitifully small in comparison to what he lives with on a daily basis.

Yes, I envy published authors and escape into their books as often as I possibly can.  It’s easier to lose myself in their writing than it is in my own – so far.  As Daniel has shown me over and over again, each day is a new opportunity and you never know what life will offer you unless you choose to live it.

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