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The first hands to touch me
were clinical hands,
as you laid in twilight sleep, mother
drugged against your wishes
by a doctor who “knew better” than you did
what was good for you and your newborn daughter.
Clinical hands passed me
to other clinical hands
latex against my exposed
and innocent skin.
The only child of five
not laid upon her mother’s warm, waiting breasts
Could that be the explanation
for the inexplicable fear of abandonment
that has paralyzed me most of my life?
A fear that compelled me to crawl on my hands and knees
Until I could prop my chin at your feet, willing my gaze to awaken you
without rousing the jealous man who lay beside you?
When I was lucky, your eyes would flutter open
your tender gaze would find me,
and you would open your arms
like the gates of golden heaven
and the grip of those cold, clinical hands on my heart
would be torn loose, banished by the warmth of your body.
We cannot know now
if four decades ago that doctor’s arrogance
disrupted the earliest, wordless bond
of mother and child.
Perhaps it has nothing to do with the consuming emptiness
that has haunted me all of my life.
Maybe it is only a result
of your decision to share that story
over and over again as I grew-up
that created the memories of being taken
from a warm, safe haven of love
to a place of harsh, sterile separation, barren of life.
The stories we tell our children
have a power unimaginable
in the adult world, of logic and common sense.
I cannot blame you mother
for sharing a memory that was painful for you.
I just wish that I could go back and change it, for us both.
I’ve been reading a lot of quotes lately from writers about finding time to write. The consensus seems to be that “real” writers spend time, significant time, every day, working. You can read books, blogs, magazines, and find thousands of distractions but if writing is your life, you devote yourself to it . That means a lot of words and sentences, whole paragraphs and pages, that may be crap. Crappy or not though, you’re not likely to write well if you aren’t writing for several hours a day. It’s not an easy life, to say the least. I say that as an unpublished, aspiring writer, and it’s far from original. It’s an encouragement to myself to stick with this. I had Chicken Soup for the Writer’s Soul for a while, and it was great for giving examples of how perserverence paid off for authors. The love of writing has to carry you when your belief in your own talent is minimal. Ultimately, you face yourself every day and that’s probably the most daunting aspect of writing, at least for me.
I’ve taken to ending my blog posts with a wish, or a blessing, for anyone who might read it as well as for everyone who doesn’t. (the vast majority) May each of us trying to find our voice have the strength to open our minds and ignore our inner critic. May we be willing to write crap, knowing that within it there are jewels of inestimable value. May we also trust our heart that says with every beat, “write it, write it, write it,” knowing we have something to say that is worth writing about. Bless us, published and unpublished, famous and unknown, as we gather up our courage and strike the first key with our fingertip, launching ourselves into a new galaxy one word at a time.
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.
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.
Most of my life I’ve considered it a virtue that I’m willing to look like a fool. My children found this to be one of my most endearing qualities when they were young, but as they’ve enter adolescence, well…not so much. A good example was trying out my LandRollers today. As a veteran of bilateral knee surgery, I have to wear knee braces. The current pair I’m sporting are gray, as are my LandRollers. I happened to be in brown shorts and an orange and brown tie-dye shirt, not exactly a match made in heaven between top and bottom. Taking the time to change clothes seemed silly though, so off I went, tearing down the driveway, a mismatched melange of colors teetering toward disaster. I heard my son mutter, “I am not related to you in ANY way!” as he heard my rendition of Jim Croce’s “Roller Derby Queen” start while my husband snapped candid shots with our camera.
My husband is much more willing than my kids to smile in amusement at my antics these days, probably because they have worked in his favor more often than not (yes, I willingly wear lingerie that would make an underwear model blush).* Another reason may be that it suggests a depth of character, laughable as that may seem, that he respects. My husband is paraplegic, has been since the age of 12, and while in my eyes he literally embodies the physique of an Adonis, he weathered several rejections on internet dating sites (before we were “matched”) simply because he was honest enough to say he used a wheelchair. I could never make sense of that when he told me about it after several dates. Here he was, a strong, handsome, virile, man who had been a number one seed on the USTA wheelchair tennis circuit with a coporate sponsor; financially independent with a six-figure salary and enough savings to retire whenever he felt like it; an intellect that both dazzled and seduced simultaneously…..how on earth could something as minor as his use of a wheelchair be a dealbreaker? (his sexy red sports car only added to his “hotness”) Whether you call it luck or destiny, there was incredible chemistry, and he sealed the deal with our first kiss.
I don’t know if there is any relationship between my willingness to play the fool and the profound love I found on the internet. It’s an attribute that I’m stuck with and that I hope endears me to my family. They might have preferred Sophia Loren (especially my husband) but they’ll just have to accept someone closer to Lucille Ball.
* [This attribute must run in my family, because one of my sisters and I ended up laughing to the point of tears as she described squeezing her middle-aged thighs into a pair of chaps her husband had gotten her in a size based more on wishful thinking than reality.]
My heart is racing as I type these first words. That’s how naive and new I am to the blogosphere. This feels like a momentous occasion. It’s completely different than my first tiptoe onto the internet scene. Sure, I’m on Facebook and Twitter, although I don’t use either as proficiently as I should. In my first try at blogging I had hoped to help others, and ended up with one follower. This blog is, in a sense, completely for me and it feels more like a profound exploration of something mysterious and unknowable. A dive into deep water with the hope that I’ll grow gills so I can breathe in every atom of it. “Fools rush in where angels fear to tread.” (Alexander Pope) Ah, I have ever been (and probably always will be), a fool when it comes to creative expression.
So swiftly, a mere moment of bliss, and life calls me back again. My pre-teen son needs a ride. Thank you WordPress, for a measure of space in cyberspace.