My son Al

June 28th, 1995 was a Wednesday.  My contractions had started before the sun came up and at the hospital the midwives were waiting to help me through labor.  Albert Louis Schuitema was born that afternoon.  His eyes were so dark they were almost black.  Looking into them, I fell into a universe soft with love.   It was difficult looking away.  He seemed like a sage, an old soul still between worlds.  I felt awe and wonder as I took him in.  His tiny arms and hands spasmed as his nerves adjusted to the transition from the womb to the birthing room.  Time seemed to slow as Albert greeted his grandparents, cousins and aunt.  When he was given back to me, he fell asleep in my arms.

It seems incomprehensible that he is going to be nineteen tomorrow.  He is away with friends as I vacillate in time, caught in moments that span almost two decades.  He would tease me about my tears if he were here.  It is so hard to let him go.  Sweet, considerate, loving and warm – that is my son, Al.  He is no longer the precocious little boy in his red vinyl boots and his Power Ranger costume.  Lately when he leaves, I rush to hug him, hoping to convey how much I love him.  He patiently hugs me back, smiles and turns to go, already inhabiting the future.

Bathed in radiance

One of the most difficult things about having a self-hatred problem (for me at least) is that I realize how narcissistic it is when I’m in the midst of it.  Right now I’m looking at some challenges that I hadn’t wanted to take on.  As the time comes closer to the day that I have to actually engage with one of them, my feelings steep into a dark, ugly brew of self-castigation.  I know, from the deepest part of who I am, that meditation and writing are key parts of how I have to deal with my “mental” illness.  Meditation takes you out of that narcissistic, “I am the world, I am the children” mode (with apologies to the late, great Michael Jackson for borrowing his words) to “there is no me, there is stream of consciousness.”  Writing helps to clarify, like ghee does to butter, what is driving the worst parts of my nature.  I was so blessed to have parents who gave back to the community we lived in.  My parents were blessings in every way!  They weren’t perfect, no parents are, but they gave me the tools to get out of this hell I put myself into.  I watch my siblings do it all the time, and considering the fact that I think there is some genetic component to my brooding self-loathing (maybe they got the blood clotting mutation, and I escaped that and got the “woe is me” mutation) I know that there is a way out that some part of me is choosing not to engage in even though it would improve my mental well-being. I’ve titrated myself off of medications that some told me I’d be on for life.  I’m proud of that.  The real question for me, that I am asking publicly as a way to call myself to some responsibility is; why do I feel the need to have secrets?  Secrets from people who love me and are used to complete honesty as part of that package (which it should be).  That is the knot I am currently trying to unwind like the contestants on “Survivor” which we have watched almost since Season One.  I don’t mean secrets like an affair, or a secret bank account, I mean more minor secrets like going to the YMCA and using some of my tiime there to try and write.  But just like not writing builds to a volcanic eruption of words from my mind, keeping the most minor of secrets builds and builds upon itself until I find I’ve spent money for something good for me (i.e. a personal trainer at the Y) and not telling my dearest love that I’ve signed up.  I use the excuse in my mind that he would say “No”, but when I telll him (as I always do, I cannot bear guilt) he is nothing but lovingly supportive.  I can honestly say that some long ago prayer to some deity was answered the day I met my husband because he is all that I have needed.  Unfailingly patient and kind to me (not as much to the kids right now, but they’re teens who hate us – and even with them he exhibits feats of greatness as a parent I fear I never could). he supports me unconditionally,  Kevin, you are truly the hero of all my crazy romantic fantasies.  There is nothing like the wonder/despair of feeling like your co-parent is doing such a great job with the kids that you worry you may lose your relationship with them.  (totally unsupportable by the reality of my life and how my kids act – but great fodder for the self-hatred blob monster in my head).    I am blessed in SO many ways, bathed in radiance that I can only sometimes see and feel, but is always there.  My words may not be of help or interest to anyone, which is a writer’s silent despondent reality (in my case).  Still, the catharsis of getting them on the page, exposing my weaknesss to a wide web world, somehow helps me.  Who knows why?  I pray that today I will live feeling the radiance that bathes me, and celebrating the gifts my husband has.  The gift to stay when others would run away.  The gift of forgiveness to me and the kids, when holding a grudge and staying angry would be SOOOOO much easier.  Few, if any, relationships are perfect.  I  hope that I give proper thanks and respect to my husband, a single man who took on a crazy woman (me – not the way I presented myself on e-Harmony : D ) and her three needy children, and still managed to dip me (as a paraplegic) in front of our fireplace and say, “My love, will you marry me?” A man with everything to lose, and many years of frustration ahead, with so much extra work that he already had to go through being in this inaccessible world as a paraplegic, but willing to take on more.  Yes, I am indeed, bathed in radiance every day that he loves me, and every night we share, whether we are surrounded by the silver light of the moon, or bogged down in the latest challenge one of our children has presented to us.  The wolf, my spirit animal and my inspiration, lays beside me every night.  Showing his devotion to me and our family in so many ways I can’t count them. Unfortunately, my self-hatred will flare up another day for a confrontation.  Hopefully, the lessons my family (my greater family – the one of the world, and the one of my siblings and my dear husband and children) teaches me will help me flip him/her/it the bird, and keep running on that treadmill another day.  May your day be filled with blessings and peace.

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.