Falling In Love for the First Time

One of the most tenacious demons I’ve had to face since my Mother’s death is my own self-hatred.  I’ve been prickly, “emo” (as my daughter would say), anxious, depressed…my body has started to morph into what hers looked like prior to her death.  Bloated, unlike she had ever been.  Physical complaints that no doctor can find a diagnosis for…I keep looking up words like, “empath” because I’ve seen this before, taking on symptoms of those I love as if it will relieve them (which it doesn’t – especially in my Mother’s case for obvious reasons).  I wasn’t ready for her to go.  No matter how ready she was, I wasn’t.  Not that it matters, because it’s what she wanted that is most important.  I just have this nagging sense that the things that were bothering her the most could have been resolved by specialists.  None of that matters now, but it nags at me.  I miss her so much every second of every day, even though I wasn’t the “good” daughter who called every day.  She was never out of my thoughts or heart.  Now I have to somehow fall in love with the daughter she left behind.  Filled with self-hatred and loathing of a type that sickens the heart and soul, I have to find a way back to love and compassion for myself.  She was my heroine.  She was my role model, even though I could never live up to her example.  She was my beginning and it’s hard to know how to live beyond her ending.

I think of my Grandmother Alice Proctor Hartley.  I want to know so much about my English relative and my Mother’s roots, but I resent having to pay what seem like exhorbitant costs for ancestry services.  I want to go to the old churches and look through their records, retrace the steps Alice took that led her to Frank Hartley and brought them to the United States.  I want to see my Mother grow up, watch her brother before the war takes him and know him as she did.  Francis Louis Hartley.  Gone to the insanity of war, a reflection of the insanity in my own psyche that fights against loving who I am.  Reading Terry Tempest Williams I am envious of her strong family roots, especially those between women in her family.  I want to find those roots in my own background and reclaim my Mother’s heritage.  Maybe it will help bring me back to myself, or help me to find things to love within my own devastated heart.  My sister’s try to help, my brother tries to help, but I need roots.  Nothing feels like it holds me to the ground and the poisonous weed of self-doubt and self-hatred jousts daily, moment by moment, with my healthy self.  The baby my Mother loved and nursed in the night, the little girl who my mother took to the beach and protected with her body in the night when the terrors came to try and claim me.  There is no one to hold me now when the terrors come, and that little girl is weeping for her Mother to wake-up and pull back the sheets one more time, so she can snuggle in next to her and feel what it is to be warm and loved.

Letters to Mom

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Dearest Mom:
I knew, long ago, that I would feel completely lost without you in this world. There are so many ways I miss you I cannot even begin to describe them. I know people try to understand that I’m still mourning. You’ve been gone since June 15, 2013 but it’s barely been a breath in my world. A ragged, dragged in breath between sobs that shake my soul and seem as if they’ll never end.
To say that I miss you doesn’t even come close to what it’s like without you. My life has been ripped apart, and yet, like all my siblings, I have to go on with it. Daniel’s five days in the hospital (where we had an altar with your photo on it) ended with him needing two more respiratory treatments, and his cough is already sounding worse again after a week at home. I don’t know if I can live through losing both of you. I watched your deep sorrows (and joys) throughout your life, and know each of your children had a special relationship with you. Ours seemed to diverge in unthinkable ways at times, and at others seemed to mirror each other. You lost a brother, I will lose a son. You were never quite the same after he was declared MIA, and I have never been the same since Daniel’s diagnosis. I’ve always felt close to your side of the family, and yet I don’t know any of them. I know it is, in part, because you said I reminded you of your mother, although I can’t imagine anyone less like her than I see myself to be. You said I “saved your life” by being there, an innocent young girl with big brown eyes, during some of your darkest times. Times when you needed to know innocence still existed, and I had my child’s view of you as perfect, of your love as perfect, that helped you feel your life was still worth living in some of the hardest days you faced. (then I lost my innocence and caused you some intense worrying, but our connection always felt open) I always saw you as Audrey Hepburn, grace personified, but with an English Garden soul. You didn’t share your most challenging moments with more than a select few. Mostly, you listened. To all of us. Friends, family, people you barely knew. I’ve inherited that from you (or learned it) and I’m so grateful. I let you down most in the last couple of years, when all my sisters called you daily, and I barely managed it once a week. I didn’t want to worry you, and so many of my days were filled with sorrow. Some of it due to depression and letting my “self” get lost. I didn’t want to call you when I was weak, especially once we lost Dad. We’d gone through so much together, I somehow couldn’t bear to talk about our shared loneliness (my own more self-incurred, yours because of the circumstances of your birth and how your life unfolded).
You made Dad’s funeral a hero’s tribute, full of all he accomplished, his honors, certificates, and all he gave to our community. Who will come to your Memorial Celebration Mom? You, who always passed up the glory to let others shine. Those people who really knew you know that Dad, as amazing as he was, needed you as his compass. Always willing to let him have the spotlight, whether holding his hand and heart or holding him up in those last years when dementia robbed him of everything dear to him. No one and nothing was more dear to him than you, sweet Margaret, whose brother carried a photo of you in his U.S. Navy Hat during WW II. where most sailors had photos of their girlfriends. You have been more dearly beloved to more people than can ever show up at your Memorial Service. Many of them are already gone from this “vale of tears” and rejoicing with you, I dearly hope, in that place of peace beyond this life. If there is a heaven, it is there because nowhere else would be fit for someone of such ethereal beauty of form, and of heart, as you. There are many letters, and memories to come. But the duties of my life are calling.
Know my love is with you still, and the love of all your children and so many, many others.

With All My Love, broken-hearted as it may be,

Your youngest daughter,

Janet

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.

Self-Absorption

As I edited my last post, it occurred to me that self-absorption is one of the reasons for my genetic “defect.”  Assuming responsibility for everything requires a pretty sticky relationship with your ego.  It reminds me of cartoons where the characters get stuck in their own “fly paper” and end up a big ball of glue, lint, hair, and other assorted trash.  I’ve been processing a lot of pain about my son who is disabled (marinating in it might be a more appropriate description) and have resorted to eating “cheerfully” colored foods to bolster my spirit. (carrots, clementines – you get the idea)  Along with the pain is the shame I feel in thinking that somehow MY grief is deeper than anyone else’s. It all just gets stickier the more I think about it.  I’ve listened to Tara Brach’s podcasts, which always help unstick some of the mental glue.  Also, despite my lack of faith, reading the poetry of Wendell Brown is magical in its’ ability to snip away at the bindings my brain creates so craftily. (thank you my dear Brother Blogger, for giving so much to the world) http://foreverpoetic.me/

It’s another day, the sun is going down, and soon my son will come rolling up the sidewalk from school. (where he is the student of the month this month – GOOO DAN!!!!)  His smile never fails to bring one to my lips as well, and his dry sense of humor always chases some of the blues away.  He is still here with me.  All three of my precious children are still here with me, and that makes today a pretty fantastic day!!

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.