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.

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!!

New day, new job

Today I start work for the first time outside our home in two years.  I was up until 1:00, up again several times because of pain, and am now  hoping coffee will pry my eyes open enough that I won’t fall asleep during orientation.  A part of me wistfully wondered what it would be like if our middle son, who is 15, was not afflicted with this horrible disease called Ataxia-Telangiectasia.  I wouldn’t be up so early, because he’d get himself ready for school.  He wouldn’t have to suffer through 5 respiratory treatments along with two other liquid medicines and four pills.  He’s be able to sleep later himself, and the dark circles that are a constant under his gorgeous green-blue eyes would be transitory.  Knowing our son, he’d probably have broken several hearts, or at least have had several girlfriends by now.  Instead, every moment he spends awake takes more energy than I can imagine.  He has become left-handed, not by choice, but because his right hand shakes so much he can’t really use it for much.  Video games are becoming harder and harder for him to play, and he has a two-hour round trip bus ride to get to a school where there are kids he feels comfortable with.  Kids like him.

In addition, he’s been coughing for weeks now.  His doctors look at me sympathetically, and say there’s basically nothing else they can do that won’t make his life even more miserable than it already is.  I’ll spend the day worrying about all of my kids, but especially him.  The bright spot was a gift I was able to give him last night.  When I reminded him that I would be working today, he looked stoic but depressed and said, “And I’ll have to have some nurse come in and take care of me.”  “No honey,” I replied, “You will always be my first and most important person to care for.”  I may have to lose some sleep, but to see the look of relief that came over him when he realized that for now his life would stay basically the same…there’s nothing that I wouldn’t be willing to give for that.  I can’t help but think of my husband’s parents when he was young and in the hospital for weeks, months at a time.  His Mom would come in and out during the day, and his Dad would come after working all day on his feet doing hard, manual work, and spend the night.  This pattern was repeated constant times, with his sisters at home missing their Dad, I’m sure.  They didn’t complain though, not one of his family.  Just as with our son, his family knew that the suffering their child and brother was enduring was far worse than whatever they were giving up to help him.  They had another characteristic that helped them.  A deep, enduring faith in God.  It may have been shaken at times as they had to stand by, as I do, and see their son suffer, but somehow they held on.  I pray with all my heart that I can find just a little of that faith myself today.  Some link to spirit that helps me keep walking through the day, smile with my new co-workers, and drink coffee.  A LOT of coffee.  Namaste’, and may God Bless all of us on this spiritual journey in our human forms.

Thoughtful blogging.

My last blog post wasn’t very thoughtful.  Hopefully people read all of it and didn’t stop with my whining and complaining.  (oh wait, that WAS all of it!  : D )  Nothing in life comes with guarantees, and I’m very lucky to have the wonderful husband I do.  The fact that I get triggered is my issue, not his, and meditation is the best antidote for that particular problem.  Our couple’s therapist says we are on opposite ends of the spectrum in reference to the Mars/Venus characterization.  I’m as emotional as you can get, and he’s as analytical and logical as you can get.  I’m a female Kirk to his Spock – ha!  For a while our therapy sessions would start like this;  “So, what major life events have happened since our last session?” because we fast forwarded through so much.  In the time most couples would have had decades to go through issues, we’ve had months or weeks to go through.  My husband has honored the vows he made on the day we got married every single moment of every day.  He’s had catastrophic health events happen, plus taking on a whole “needy” family.  He wouldn’t characterize us that way though, he’s not that kind of man.  He really is a prince, and he has given us stability.  While I spin around like a broken accelerator dial on the dashboard of life, he keeps us all on cruise control.

On top of that, he’s helped me to stay more balanced too.  He’s a great Dad for our kids, and he’s the most virile man I’ve ever met.  In other words, the chemistry is still there and I can’t imagine it ever not being there.

I hope this blog entry is more thoughtful than my last post, which was written by Mrs. Hyde. ; <   I try not to let her take over too often.  We’re all human, for better or worse, and the best we can do is keep working on lengthening the pause between action and reaction.  In my case that is going to take A LOT of hard work!  Laying on the grass, even if it is brown from lack of rain, and picking Queen Anne’s lace on our family walk and roll after dinner (two bipeds, two wheelchairs, three quadrupeds/canines) can do a world of good in changing my perspective from that shrunken, self-absorbed me to a woman very grateful for all my blessings – with my husband at the top of the list.  Peace and blessings to all.  Namaste’.

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.

Roller Derby Queen?

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.]