Marriage and Caregiving Can Go Together

When I got married, I did not expect to get divorced.  That is probably what every divorced person says.  It’s almost funny.  It’s funny because it’s true.  I expected it to be hard.  I expected it to even be an ordeal at times.  I also expected it to be good.

So, what went wrong?

I don’t have any divorced friends.  I am the black sheep within my social circle now.  I’m also very private by nature so only a select few know the real truth behind my divorce–the reasons I ended it.

Domestic abuse.

I’ve been silent for a while on this blog because I’ve been active elsewhere, documenting the entire process.  It’s kept me sane.

That’s not what I’m here to discuss though.  I’m here to talk about how caring for children with special needs and/or disabilities can and will impact your marriage.  How it will distill your personalities and reveal the flaws and what you can do about it so that you become better, not run over in the process of caregiving.

My marriage was never great.  That should be stated.  It wasn’t even good.  It was middling.  We should never have had children together, and I don’t mean that in a regretful way.  What I mean is that children should be born into a family where they are equally desired by both parents.  In retrospect, I don’t think he wanted them or knew what it meant to be a father.  A good father anyway.  He was the distant, uninvolved father who worked, brought home the paycheck, and involved himself with them at his convenience.  He was Generation X’s Don Draper.

He also rarely involved himself with me in meaningful ways.  One of his favorite ways to spend time was sitting in bed together, parallel reading.  I had something different in mind when it came to spending time in bed together, but he was not generally up for that–unless I wasn’t.  Then suddenly he was.  There were always games afoot.  Psychological warfare.  These games made him the victim in our relationship and in his life.  I didn’t see it until our youngest daughter was born.

Milly was our first daughter to be diagnosed with anything.  She was diagnosed with an autism spectrum disorder and anxiety along with sensory processing disorder at 4 years-old.  She, however, came into this world an overwhelmed mess.  She did not sleep as an infant or toddler which meant that I didn’t sleep.  I was diagnosed with chronic migraine disease and fibromyalgia a little before her diagnosis all due to four years of sleep deprivation and the strain of caring for a young child with some kind of undiagnosed disorder.  That was when I started getting sick.  That was also when he started hiding–running away from parental responsibilities.  In the midst of my search for answers as to why our daughter screamed constantly, he yelled at me, saying, “You just want something to be wrong with her!”

Pause and observe this.  This is denial, and this is a common reaction in couples.  One person in the coupling usually denies or minimizes the child’s “issues” and, statistically speaking, it’s usually the father.  I don’t know why.  It’s a frightening proposition to be faced with.  A sick child.  The “what if” script starts: “What if…what if…what if…”  A natural response might be to run away and pretend that nothing is wrong.  Another reaction is to blame the partner.  They might be doing something to make the child behave that way.  Is it the day care? Is it the in-laws? Is it your faulty genetics? Blame comes on the heels of denial, but blame is simply the emission of anger and emotional discomfort aimed at a target.  We all do it.

It is in this moment, however, when those first wedges are driven into relationships.  When one parent is seeking answers to help a potentially sick child while the other denies and shifts the blame.  This is what sets the stage for marital discord down the road.  Why? It erodes trust, and trust is the currency in all relationships.  In close relationships, I have to know that you have my back, and you must know that I have yours.  When your child is potentially ill and in need of help, that is the moment to come together and share fears.  So when one partner uses the other for target practice, that is a betrayal of that most sacred trust.  It is a form of abandonment within the relationship not to mention one partner has just left the other partner to figure out the problems all on their own.  The relationship was temporarily sacrificed as a coping strategy.

What happens from there? The abandoned partner usually begins remembering all the other times they were abandoned by their mate.  It’s a gestalt experience.  And the seeds of discord have not only been sown but are now being fertilized.  Depending upon emotional maturity, character development, and past issues with one’s family of origin, a person can either get past this or not.  I’ve seen this dynamic play out within other relationships wherein there were children in the middle of receiving a diagnosis, and it definitely played out within my own marriage.  It was a devastating experience.  As the primary caregiver, it caused feelings of isolation, anxiety, and fear, and I didn’t know who to turn to.  My spouse wasn’t on the list because he removed himself.  As far as he was concerned, his kid was fine, and, if his kid was fine, then I was fine, too.

Then, Grace got sick.  There’s nothing like a psychotic episode to wake a person from their oblivious slumber.  His denial reigned supreme.  Wash, rinse, repeat.

Eadaoin hit puberty and bipolar disorder came to the surface.  It was like someone signed us up for some kind of nightmare roller coaster ride, and we couldn’t get off.  I was barely holding it together, and I kept looking to him for some kind of support.  Anything.  He just locked himself away in our bedroom which he had turned into his office.  I had nowhere to go.  I thought that if we could maintain some kind of connection–any kind–maybe we could rely on each other for something.  I pushed for sexual connection.  That’s when the worst of the domestic abuse started.  Clearly, he didn’t want to be involved in anything.  We were on our own.

A year after I had corrective surgery on a hip injury he caused I called it: “I think it’s over.”

He agreed.

So, what is to be learned here?

  1. Always put on your oxygen mask first.  What does this mean? Tend to your stuff! If that means going to therapy, then go.  If that means going to the doctor for a physical, then go.  If that means joining a gym and getting in shape, then go.  If that means changing jobs, then do it.  There is only one you, and, if you are a caregiver, then someone really needs you.  Take care of yourself so that you can be present.  More than that, if you are in a long-term relationship, then be the person who you would want to be in a relationship with.  I can’t emphasize that point enough.  Someone chose you.  They met you, liked you, and then fell in love.  With you.  They decided that they wanted to spend their life with you.  That’s a very big deal.  Never forget that they can always change their mind should you suddenly become a total dick.  I’m being frank here because it needs to be said.  We must always be developing our character and maturing our personality as well as taking care of our bodies so that we can rise to the circumstances that life throws our way.  This is why you must, must, must make your health, well-being, and ontological state a priority.
  2. Assess the state of your relationships.  Doing a survey of how you are doing in your relationships is key to developing your character as well as addressing bad habits that naturally develop over time.  Are you known for anything in particular by your friends and family? Are you the person who loses their temper? Well, get on that.  It’s time to be known for something better.  Are you always late? For everything? Develop your empathy and address that shortcoming.  Doing an honest personal inventory of who you are now vs. who you would like to be is a courageous and valuable thing to do.  It sets a course and provides a spark of momentum.  It’s intentional and says to the important people in your life, “You matter to me.  I know that I affect you.  I want to do better by being better.”
  3. Make amends.  This is a hard one, but it goes a long way.  Talk to the people in your life.  Had my ex-husband and I actually discussed past hurts in a meaningful way and combined them with a plan to heal the wounds (this is accountability), there might be less pain today.  He was never able to engage me in any kind of emotional discussion.  Nothing was ever addressed.  So, I was never able to hold him accountable for anything.  In the end, I was blamed for my own abuse.
  4. Grow up.  I know many people who hold onto childhood dreams of what family and marriage should look like.  They insist on keeping certain traditions alive because they find it personally fulfilling, but it hurts their family relationships.  When you have children with special needs, nothing in your life will ever be all-or-nothing again.  Everything will become about compromising, and you will take the hits.  This will feel painful to you.  I guarantee that.  You will have a moment, at least one, when you step back and look at the landscape of your life, and it will feel utterly unfamiliar to you.  This feeling of depersonalization often ushers in the experience of grief.  It’s at this moment when you feel just how hard it all is.  How much you have lost.  Just be honest with yourself and let it flow.  It’s okay.  You can see the good in the child or children you love while feeling hurt and betrayed at the same time.  That’s the dialectic of caregiving.
  5. Do a proper grief work.  If you do a proper grief work together, sharing your experiences with each other, then you will grow closer.  Ordeal is one of the best bonding experiences.  My ex-husband never went to the hospital with Grace and me.  He never went to an appointment.  He never went to the Behavioral Health ER either.  You know who did? Girlfriends.  Do you know who I am close to now? Girlfriends.  My girlfriends and I remember those early days of the disease onset, and we can even laugh about it as macabre as that sounds.  We were scared together.  They loved Grace, too.  So, I grieved with them instead of with my husband since he never left the bedroom.
  6. Stick together.  Above all, be a couple.  You were together before you had children.  Don’t ever forget that.  Find at least one thing that makes you feel connected and commit yourselves to it.  Never give that up.  If it’s sex, then have sex often.  If it’s hiking, then hike as often as you can.  If it’s watching sports together or playing sports together, then get out there and do it.  Protect your relationship fiercely.  Do not let in-laws tread upon it no matter how well-meaning they are.  This is your relationship.  Make it the number one priority in your life.  Even above your kids.

This is what I have learned after nineteen and half years of marriage and nine months of separation with a pending divorce.  I have never been someone to look to statistics for answers.  Of course, now I am a statistic.  You don’t have to be.

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An Evening Post

Grace cried this evening.

It wasn’t tears brought on by lability.  One grows used to those tears.  Sometimes those tears seem almost like crocodile tears.  I almost feel numb to that sort of emotional display because it seems to be brought on by a shift in brain chemistry.  I know that Grace’s medications need to be adjusted.  It almost feels like a surreality.

This was different.  This was honest.

Grace didn’t cry often as a baby, and she rarely cried as a toddler.  She cried when she woke up from her naps.  That’s it.  Her preschool teacher once told me that she didn’t think she could ever stand to see Grace cry.  She has always been that sort of girl.  Happy and somewhat quirky.  Even as a toddler.  In her own world.  And whatever her world was like, there was no crying.

So, when she cries, it affects me.  I don’t like to see anyone cry.  I might cry if someone cries in front of me.  When Grace cries? I suffer.

She wanted to help Eadaoin babysit tonight, and Eadaoin looked at me in silent desperation–a plea for help.

“Grace, I think it’s better if Eadaoin goes alone.  You had a sleepover last night, and you said that you were really tired earlier today.”

“But I love taking care of little kids, Mom!”

Eadaoin looked conflicted.  “Grace, it’s just that it’s going to be late, and it’s hard for me to babysit with other people with me sometimes.”

Grace didn’t understand.  I looked at Eadaoin.  I looked at Grace.  I decided to tell her the truth.

“Grace, I think what she’s trying to say is that she feels responsible for you, too, when she’s babysitting, and she wants to focus on taking care of the children that she’s being paid to look after.”

“Yes!” Eadaoin said with relief.

Grace looked confused for a moment, and then her expression changed.  She looked at me.  She looked at Eadaoin.  I saw tears well up in her eyes.  She understood, and in her understanding of what was being implied I felt pain bloom in my chest because I knew that something painful was blooming in Grace’s chest, too.

She turned around and silently walked up the stairs, but I could hear her crying.  I couldn’t let her go upstairs alone and cry by herself.  I found her on the edge of her bed, tears streaming down her face.  I had no idea what to do.  I just wanted to take it all away.

What’s the right thing to do? What’s reality here? She can’t babysit.  Just yesterday she told me that she didn’t recognize her dad.  For a moment, she forgot who he was.  She needs to take constant breaks in the day.  She needs supervision.  And yet, she is still a 13 year-old girl who couldn’t wait to babysit when she was nine.  She loves children.  She still wants what every other girl wants.  She still talks about being married one day.  She still has dreams.

I sat quietly on her floor.  I asked her what she was feeling.  She said, “I feel sad.  I don’t like what’s happening to me…”

I cannot adequately express how painful this is to watch.  I want to understand it.  I want to know why this is allowed.  There are no satisfactory answers, and I know that.  Right now there are people in hospices watching their loved ones die of terminal illnesses.  There are people with early-onset Alzheimer’s who are slowly losing their lives, and their families must witness it.  There are cancers and diseases the world over, and there are no good answers as to why innocents suffer.  They just do.  It is the human condition.

It is brutal.  It is the great equalizer.  It won’t matter who you are, where you come from, or the size of your bank account.  Suffering knows no bias.  Everyone will experience it.

I spent time with Gracie in her room.  I tried so hard to just listen this time.  I wanted to validate her rather than be Supermom and fix everything.  I can’t.  I can’t fix everything, but I can be her witness.  I can let her know that I’m here.  I have no good answers, but my presence is an answer albeit a poor one sometimes.

I went downstairs to make bread, and, as I was measuring out the gluten-free flours, a scene from “Steel Magnolias” played in my mind.  Sally Fields’ character was angry.  She was standing in front of her daughter’s coffin, who had died due to her body’s rejection of a kidney.  She was surrounded by her friends who were all crying and trying to comfort her.  She stopped and suddenly shouted out that she wanted to know why.  She just wanted to know why her daughter had to die.  That’s how I felt.

Why did my daughter have to have schizophrenia? Why did she have to be regressing so quickly? Why did she have to experience so much suffering? And why did she have to be aware of it? She knows! And her self-awareness is causing her so much pain.  WHY?!

And then I started crying.  And I really hate to cry.

But then the rest of the scene continued to play as I cried, and there in my kitchen I watched Olympia Dukakis drag Shirley MacLaine forward to be punched in the face: “Knock her lights out! Take a whack at Weezer!”

 

And, I laughed.  Such is life.  It is truly bittersweet.  Mine doesn’t stop.  A friend commented today that she has never understood my life.  We never get a break.  It’s true.  We don’t, but that is our life.  I don’t know if there is purpose in that or not, but I suspect that we are the ones who determine that.  I can add meaning to all this should I choose to.

I am grieved to my core that my daughter is in pain, but I have the privilege of sharing her journey with her.  And, I will be with her to the end be that in body or spirit, however she chooses to let me.  I will do whatever I can to honor and add to her dignity so that she always knows that she is beloved and worthwhile regardless of her momentary abilities.

And so, for tonight, I stop asking why.  I turn to Christian theologian Stanley Hauerwas who once said, “What we owe a mentally or physically disabled child is not to ask why God permits this, but to ask ourselves what kind of community we must be so that this child can live as full a life as possible.”

That? I can do that.

 

 

An Ode to Mindfulness

Sometimes I’m bewildered.  It’s a challenge to stay in a positive head space during the summer because everyone is home.  Grace is here, and she’s usually pacing the house, roaming, hovering, staring.  She needs constant shepherding.  She does not self-direct easily.  Her body is growing, but her mind doesn’t seem to grow with her.  This is the hardest part for me to observe, and she is aware.  Sometimes she cries.  She knows that something isn’t right.  This is why summer is hard.  There is too much time.  Time to reflect.  Time to notice.  Time to wonder just what is wrong.  Time to play with friends who seem to be surpassing her in every way.

I want to be the Goblin King and whisk her away to another land where time stands still.  She will stay as she is.  She won’t deteriorate any further.  She won’t know what it is to watch more friends leave her behind.  She won’t know stigma.  She will keep her dreams of marriage and children in her hands like delicate soap bubbles and let them float around her on the breeze of her hope and imagination.  She won’t suffer.  She won’t fear imaginary creatures that only she can see.  She won’t be blunted and delayed by harsh medications and loss of white matter.

She would always be her.  As she is.  As she was.

Sometimes it is hard to live in the moment.  It is hard to see her as she is now because I remember her as she was, and they are no longer congruent.  This is a hard reality for me.  There is no getting around this.  Grief is the passageway.  I’ve written about grief before, but I suspect that grief is a lifestyle when one is caring for a child with a neurodegenerative disease.  A part of me wants to turn my eyes away and say, “This can’t be.  This isn’t permanent.  She will bounce back.  This will remit.”

It won’t.  It will progress.

This is very hard to accept.  I don’t like it.  It is painful for me to accept this reality even though it’s in my face daily.  Why? Because I fight.  I fight everything.  I will probably die fighting something, and this is why the DBT skills group that I’m taking with Eadaoin has been so excellent.  One of the core concepts of DBT is radical acceptance.  Radical acceptance is a very hard concept for me to practice because it feels too much like giving up, and I simply don’t do that.  Never give up.  Never surrender.  This is my mantra.  It is how I have survived some extreme environments in my life.

There comes a time, however, when we must accept certain realities.

You cannot change anything about how you got here.  You are here.  Grace is here.  No matter how hard you fight, she will still have schizophrenia.  You can fight it, or you can accept it.

I don’t know why writing that out undoes me, but it does.  I feel completely helpless.  This is one of the hardest parts of practicing mindfulness.  A friend joked with me in passing that mindfulness was for pussies.  On the surface, it does look like that.  It certainly sounds like a benign word and a relatively kind practice.  One conjures images of candles and Buddhist monks.  It is anything but that.  Mindfulness is ruthless.  Sitting with yourself.  Being present to your feelings however uncomfortable, painful, or overwhelming they are is extraordinarily difficult.  Choosing to completely and wholly accept the things in your life that you cannot change requires you to engage your entire will and character.  Practicing being present forsaking maladaptive daydreaming and poor coping strategies in favor of better ones can feel almost tortuous particularly when your present life feels like a nightmare at times.  Mindfulness is like that sharp, bitter, little pill that I have to swallow because, honestly, there are times I’d rather be anywhere but here.  It is extremely hard to care for a child with mental illness, an autistic child, and another child with a probable mood disorder.  It is extremely intense, and it requires intense focus and determination not to mention an endless well of patience.

I can do this most of the time, but there are days when even the best of us requires a break.

This is why mindfulness is so important.  If we are present to ourselves, we’ll know our own rhythms and recognize what we need before something awful happens like this (click link).   Mindfulness promotes personal responsibility and prevents us from acting like martyrs and victims of our circumstances.  That is the last thing I want to perpetuate.  I may become bewildered.  I may feel overwhelmed.  I may feel grief.  There are days that I might even want to run away to my own personal island where I am served by two cabana boys named Hector and Jorge and ride a horse named John.  What I really want, however, is to create an environment in home, life, and heart that is big enough to answer this call:

“What we owe a mentally or physically disabled [person] is not ask why God permits this, but to ask ourselves what kind of community we must be so that this person can live as full a life as possible.” Howard S. Kushner, The Book of Job: When Bad Things Happened to a Good Person

And so we engage in our own process, whatever that looks like, so that we can rise to the challenge of being a source of goodness, kindness, and compassion to those around us who need it always remembering that we ourselves need it, too.

 

 

 

Perspective

I live in a rather tightly-knit inner suburb of a large city.  I tend to see the same people at our local grocery stores, and I have gotten to know some of the cashiers at my local Target well enough to invite them over for holiday celebrations.  There is a distinct sense of community in our little city; so, when something bad happens we all feel it.

Well, something very bad happened yesterday.  Two classes from one of our elementary schools went on a field trip to a park to hunt for fossils.  There was a landslide.  It was a freak accident.  We’ve had a lot of rain lately.  The ground gave way, four children dropped down a 30-foot bluff, and…one was killed while another went missing.  He was buried underneath the gravel.

Families with children in the school district started getting “phone blasts” yesterday at 3:45 PM with the announcement that there had been an accident during the field trip with serious injuries.  Parents started arriving at the school in a panic.  I paced the floors last night wondering if I knew the two children.  Did I know the families? Names had not been released, but I couldn’t let myself be at peace.  These families weren’t at peace.  What right did I have to enjoy a restful evening?

I imagined what the teachers, parents, and other children who attended the field trip must be feeling.  What must the teachers of the two children who died be experiencing? What about the two children who survived the fall? What about the children who would go to school and see the vacant seats of their fallen classmates? Nothing would be the same again.  I couldn’t bring myself to imagine how the worlds of the children’s families had changed–their pain and grief.  Their utter shock.  I cried in the bathroom last night.

The first thing I did this morning upon waking was check the news.  Had the body of the missing child been recovered? Had this child’s family been allowed to at least get closure? Yes, his little body had been found underneath mud and gravel.  I cried again.

The media surrounded this event.  There were photos all over the news of little children getting off the bus, holding stuffed animals to place at a makeshift memorial in front of their school.  Comfort dogs were at the school today along with grief counselors.  Somehow everyone in our community has to keep going even though there are two families whose world has come out of orbit.

I felt stricken with sadness and guilt as I drank my morning coffee and observed that the weather was remarkably beautiful.  Our lilacs are finally blooming, and our peonies look to be peaking up through the soil.  I stopped and thought of the boys who died.  I thought of the people who loved them.  When would they enjoy a sunny day again without remembering May 22, 2013–the day their world stopped turning? How was it fair that I got to just shoo them from my mind and pour cream in my coffee and enjoy the song of the Purple House Finch while they were thrust into untimely loss? It’s not.  This tragedy is not fair.

It has reminded me, however, that no matter how difficult my circumstances feel, no matter how trying they become, they are only temporary.  Everything in my life is really evanescent except for what is not.  And, what is not? The love I feel for my husband, my children, and my friends.  The hope I carry in my heart that regardless of diagnoses or circumstances, there is potential in all of us to overcome and become something more than anyone ever imagined.  This hope is what allows me now on the night after learning about this tragedy to believe that their lives will not be lost in vain.  It allows me to believe that their families, in time, can do something with their grief and the memories they carry.  I don’t know how, but I know that there is hope.  I know that there is hope for some kind of redemption nor only for their families but also for everyone associated with these circumstances.  It’s this very hope that gets me out of bed in the morning (yeah, it’s not just coffee after all).

In the meantime, I will not soon forget May 22, 2013 or the two beautiful boys that passed from my community all too soon.

I have perspective.

Sometimes I wish it took lesser things to give it to me.

Slaying Dragons

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I have to say this so that it’s on the record.  My life is not sad.  Our family life isn’t dark and pervaded by doom and gloom.  I don’t think that our life is really that different from yours.  We all have dragons to slay.  Some are behemoth fire-breathing drakes, majestic and awe-inspiring in their ability to infuse us with paralyzing fear.  They’ve lived in the territory of our family lines for generations, just over the hills, demanding that pound of flesh from our ancestors, grandparents, parents, and now us, and we’ve had enough.  It’s up to us to do something different if that monstrous beast of oppression is to be killed once and for all.  Some dragons are smaller and more annoying, stealing joy, resources, and time.  Some people might even keep one or two little ones as pets giving them cute names like “social drinking” and “cutting”, but, in the end, they’re vampiric.  Underneath our clothes, we’re all wearing armor, and we’re all beat up somewhere.  I suppose it’s just a matter of who has dropped their swords and who has not.

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So tiny, so cute, but not so nice…

Happiness is a choice, isn’t it, because those dragons are everywhere.  It’s black and white, and, if you know me, I will rarely say that.  I love grey.  I live in the grey.  In this case, however, it’s black and white.  We are either engaged in our lives, or we are not.  We are either willing to take up our swords and fight for our happiness and the capacity for happiness for those in our lives, or we are not willing to do that.  If we can’t, if we ourselves are hindered because of one of those dragons, then it’s up to us to ask for help from another intrepid fighter.  Sometimes it means going low, facing darkness, feeling things we’ve not wanted to feel, engaging in a proper grief work, letting go of resentments, forgiving people who really don’t deserve it, and taking an inventory of our inner lives.  To some, this seems wasteful, but what do you think invites the dragons in the first place? What might they feed upon? Us.

I was once in a place in life where I was too weak to even stand up much less wear armor or fight for myself, but I found that it all started with one choice.  “What do you want?” It starts with knowing what you want.  “I want to be well.  I want to be empowered.  I want to be happy.”  And, step by step, army crawling my way through the mud until I could stand, I progressed…until I could not only fight for myself but for those around me who were still too weak to advocate for themselves.

You’ve read my thoughts here as we enter into new territory with a child diagnosed with a lifelong illness.  I’ve written it here because it helps me organize my thoughts, and it’s cathartic.  Better to let it go than stuff it down and swallow the bitter pills.  I don’t, however, want to be misunderstood.  I have not made my dwelling place in grief.  I do not live in a place ruled by sadness and mourning.  These emotions are a necessary part of dealing with a child’s mental illness diagnosis as well as the subsequent loss of friendships, and, if a parent is to properly advocate for and raise their children, then they must attend to their own grief process.  That is a vital part of self-care and modeling mental health to one’s family.  American society does not “do grief” well.  Loss is part of life, and loss doesn’t just mean ‘death’.  Loss in all its forms from the loss of health, relationships, jobs, and financial resources to death and  the loss of dreams and hopes deferred  are all a part of the human experience; and, loss is a dragon that every one of us will face.  How we face it is what determines the course of our futures.

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I know people whose lives have been taken prisoner by the Dragon of Loss much like Smaug the Terrible invading Dale and laying claim to Erebor in J.R.R. Tolkien’s The Hobbit.  Feeling overwhelmed and kicked out of their own lives, they become impotent, rootless nomads, wandering around in a state of constant mourning overcome by what I can only describe as a ‘spirit of victimization’.  They are transformed into the Professional Victim, perpetually complaining about how difficult their lives are, how horrible their children are, and how much they hate their children’s problems, disease, and circumstances.  They have become blinded to their own abilities, talents, and capacity for strength and resiliency.  They perpetually look back at what used to be, yearning for what was, hating what is, fearing what is to come.  This paralysis is the result of avoiding working the grief process.  The Dragon of Loss is demanding their pound of flesh, and they are giving it up willingly whether they know it or not.

I have lived as both people–victimized and empowered.  Sometimes I’m battling both narratives at the same time.  “Who are you? Are you resilient and strong, or are you fearful, paralyzed, and unable to ask for help? What will you choose right now?” Sometimes people release their own dragons into our lives leaving us little choice but to deal with our own dragons and theirs as well.  What’s the most common dragon you’ll deal with? The Dragon of Judgment.  The interesting thing about this dragon is that he never travels alone.  He always has his partners in crime–shame and discouragement.  When we’re judged we seem to either want to lash out and unleash our own dragons or cower, run and hide, and agree with the booming voices coming at us from the Triumvirate of Terror flying overhead.  What’s more terrifying and provocative? When the Great Terribles aim for our vulnerable children, and they will.  Society as a whole does not understand mental illness and developmental disorders so they fear it.  People judge what they fear and do not understand.  Slay the Dragon of Ignorance and watch the skies slowly clear.

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The Triumvirate of Terror–Judgment, Shame, and Discouragement

Believe it or not, empathy is the antidote.  It is the sure and straight arrow that will find its way into the singular chink in almost any dragon’s armor.  It is not a matter of screaming, “I will not stand for that!” It is a matter of stating what you stand FOR.  It is not a matter of harnessing anger and using it.  The Dragon of Anger will always overpower us in the end.  It’s a matter of collaborating and not bearing a grudge no matter how much you’d like to, finding common ground, and working towards a common purpose.  Finally, it’s a matter of being in the present and looking to the future with hope because while there will be dragons in the skies, you will have a quiver, too.  And, with every step you take, you will fill it with more and more arrows because you might have fallen a time or two or three.  But, it doesn’t matter, does it? It only matters that you get up again so that you can help the vulnerable, special person next to you get up, too.

To Get You Started or Just Help You Keep Going:

“How To Win Your Inner Creative Battles and Reclaim Ownership of Your Mind” by Tom Morkes

Why I Left Facebook

I am currently sitting at my kitchen table surrounded by various family members.  It’s a relatively peaceful morning.  Grace is home.  She’s doing fairly well for her.  She got home on St. Valentine’s Day at 6:45 PM.  I promised her that we would not celebrate that holiday until she got home so all of us pretended that it was not Valentine’s Day for her sake.  When I got the call that she was being discharged–on Valentine’s Day, I realized that not only had I forgotten to actually acquire valentines for my family, but I didn’t have cheese, chocolate, fruit, and gluten-free bread for our traditional Valentine’s Day fondue dinner! I, of course, ran around town like a woman with my hair on fire and made it happen.  In the end, we celebrated St. Valentine’s Day how we always have, and Grace was tucked into her own bed at the end of the evening which gave my husband and me immeasurable peace and happiness.

Yesterday, one of my friends spontaneously invited me out for lunch.  It was very last minute, and I was very excited to see her.  Grace was home, and my daughter Milly is now a virtual student so she is home with me when her sisters go to their “brick and mortar” schools, as they say.  We went to a rather quiet venue, but Grace needed to come home and take a nap afterwards citing that she found it overwhelming.  She didn’t hallucinate which is excellent progress, and I’m glad that she was able to rest.  I suspect that the low stimulus environment of the hospital lowered her threshold for sensory input.  Once out and about in town, she found the noises, colors, people, and even the sounds of the fluorescent lights irritating and overwhelming.  For now, she just wants to stay in the house.

I was moving at a good clip.  I really was.  I was feeling at peace, not looking to my left or to my right, and then I did what I should not do.  I logged into Facebook and stumbled.  I tripped and skidded on my face to a painful, grinding halt.  So, what’s got me upset?

There is one primary reason I left social media behind.  Grief.  Well, and something else.  I didn’t know what to say.  Let’s be honest.  People aren’t exactly honest on Facebook Fakebook.  I kind of wish someone would put together another form of social media and call it OpenFace (maybe it already exists), and all the ads on the side would be for therapists, therapeutic approaches, books, different kinds of support groups, links to NAMI and other mental health associations, perhaps different religious and/or spiritual groups, a variety of 12 Step groups, and anything else empowering and helpful that I haven’t thought of.  Of course, the drug companies would be advertising their wares, and we’d all see some talking head cautioning us against priapism at least 12 times a day.  On OpenFace, members would be encouraged to be, well, open about their lives.  None of this: “Dig me in my string bikini! Doesn’t my ass look awesome?!” or “Check me and my bros out…we’re drinking in Cabo, smokin’ a few Cubans, just f*cked some chicks…it doesn’t get much better than this.” or “My two-year old is learning Mandarin! And, he’s tapdancing….AND he’s eating with chopsticks…AND he can tell the difference between Baroque and Romantic music!” or “Look at our pics from our latest trip to Switzerland! The kids had a ball! The wife and I hit the slopes, the kids ski better than we do now, and we even had a chance to visit some homeless shelters and teach the kids about gratitude.  We had an epic time!”

On OpenFace, if someone posted something like that, their friends would quickly point out, “Ashley, I saw you in that bikini, and you totally photoshopped that picture! Why are you posting almost naked, photoshopped images to social media and then begging for attention? I’m coming over and taking you out for coffee…”  or “Yeah, Steve, you got drunk in Cabo and slept with a chick, but you also caught the clap and she stole your wallet! Come on, man, you did NOT have a good time.  You don’t need to pretend that you’re not pissed off that you spent all that money on a trip that went to hell.  We all get it.  Dude, let’s meet for a beer tonight.” or  “Lindsey, your son is listening to Mandarin lullabies, but he doesn’t speak it.  He hits you with your daughter’s tap shoes and throws his chopsticks on the floor.  As for the music? I’m pretty sure you made that up because you don’t even know the difference.  You hate classical music.  There’s no rush! Cletus is a fantastic boy.  Let him grow up in his own time.  Leave the competitive parenting behind.  Your friends love him, and your friends love you!”  or, “Jake, take those pics down! You and Linda are separating.  She tells all her friends that you haven’t had sex in a year, and you can’t stop flirting with every woman that you see.  Your son has autism and wouldn’t have the physical ability to ski if a gold medalist tutored him for a year! Your daughter never left the chalet.  For crying out loud! Just be honest!!! We care about you! Come over for dinner tonight! We want to be with the real you…not your false self.”  That’s the thing.  OpenFace wouldn’t be anonymous, and you could actually tell the truth.  If you were having a bad day, then you could say it.  If you were anxious or scared, then you could say it.  If you were facing a crisis, then you could admit it.  The number of friends we might have on OpenFace would probably be smaller, but I wonder if it might be a more authentic experience.

So, what leads me to say all this? A few people I know only communicate via Facebook messaging so when I stopped onto Facebook this morning, I read this:

“We’re going to Sweden this summer! Any advice?”

My stomach dropped.  This couple, they take trips frequently compared to my husband and me.  They have kids.  They drop them off with grandparents and head out.  We can’t do that.  My husband’s father died 16 years ago, and his mother is…Faulkneresque.  She’s not around.  My father remarried in the 70s and got a new family.  He’s long gone.  My mother is…uh…not around either.  So, it’s just us.  We’ve never taken a trip together.  Just the two of us.  Ever.  We dream about it, but now? Grace can’t even go to a restaurant without glazing over and requiring a Seroquel and a nap.  I...sigh…

I went to Devon, England two years ago during the springtime.  Alone.  For ten days.  It was magnificent and magical.  I want nothing more than to bring my whole family back there to the estate where I stayed.  I want them to meet that family that so graciously hosted me.  I want Milly to see her godmother.  I want them to marinate in the ethereal goodness that permeated that landscape.  If fairies are real, then they live in Devon.  Grace wants to go there, too.  All my girls want to go and meet all the people I talk about.  My husband aches to go.  He hasn’t traveled abroad aside from living in the UK as a child.  But, will Grace be able to do that? If she can’t even sit in a restaurant, how will she endure traveling? Traveling can be very hard on a psyche.  The TSA anyone? Plane rides with crying babies? There are no guarantees that your trip will be peaceful not to mention adjusting to a new culture.  I’ve traveled to many, many countries and even lived in another country so I seldom get culture shocked anymore, but that won’t be the case for a child new to traveling.

All this is to say that I’m grieved.  Grace might be able to travel one day, but it’s more than that.  My husband and I will not be experiencing that intimate trip alone.  We have to stay behind and care for her because there is no one else who can fill in for us.  Okay, I’m holding back; there is something more.  This couple that is traveling to Sweden? In the past, they complained quite a bit about needing breaks from their children–their completely healthy, neurotypical children, and they had frequent dates and breaks to begin with.  They only have two.  At this point, I don’t get it.  Perhaps I am losing my ability to empathize.  I don’t remember what it used to be like anymore.  I think it used to be easier.  A lot easier.  I have four daughters, and three of them have needs.  Two of them have special needs.  Grace has profound needs.  I rarely get a break.  My husband and I get a date once a month if that.  When our kids were younger, we got a date once a year.  Twice if a friend offered to babysit.  I have friends in similar situations.  There’s no money because it goes to paying medical bills, and there’s no one available to watch their child aside from a PCA.  So, they are homebound with their special child all…the…time.  It’s hard.  Parents with healthy kids don’t understand.  They take a lot for granted.  Their vacations, dates, and free time.  The fact that their child can even leave the house? That someone other than themselves, their partner, or a trained professional can care for their child? Grandparents? What I wouldn’t give to have healthy grandparents in the lives of my children.  Oh, what a gift that would be.

Bringing this back around to Facebook…here’s the rub about a lot of those photos and updates.  They don’t tell the real truth about us.  That’s why I left Facebook.  People don’t join Facebook to tell the truth.  People join Facebook for a number of reasons but presenting an authentic picture of one’s life is most likely not one of the Top 10 reasons people are there.  I know that there is a certain tacit etiquette that rules social media.  No one likes a party pooper.  No one wants to read depressing updates or even truthful updates.  CNN has devoted articles to “The Ten Commandments of Facebook” (although many of these do need to be said for the sake of manners).   Do you suppose there is a connection to the rise in loneliness and a sense of isolation people are experiencing today and this phenomenon of cultivating a false self? (Yep, there is! “Is Facebook Making Us Lonely?” Stephen Marche,  The Atlantic) It takes a lot of courage to admit that you need help when you’re competing with perfect family vacations, perfect asses, perfect jobs, and perfect lives.  Where on earth would you want to admit that you gave up on your diet and ate a stick of butter while crying over your ex-boyfriend? On OpenFace!

I know, it’s a fantasy, but the truth is I have these moments where I feel overwhelmed, and I wish that none of this had ever happened.  I wish that I could click my ruby slippers and say, “There’s no place like home.  There’s no place like home…”, and I would wake up to find that it was all just a weird dream.  I would find that Grace was a normal sixth grade girl with her whole life ahead of her.  We could make plans, call our friends in Devon, and put some money aside–all that money tied up in payment plans going to hospitals where Grace stayed last year.  Alas, this is our journey, and I’ll walk it with as much courage as I can muster.

I cried to my husband today.  I admitted that I was jealous of that couple who were going to Sweden.  I told him that I felt angry because they seemed to take a lot for granted–their healthy kids and their family who so willingly steps in to love on their kids so that they can take their trips.  I cried in public.  I don’t do that.  Ever.  He just told me, “Baby, sometimes it takes adversity to help us see what we really have.  You can’t really blame them, can you? It’ll be our turn one day.”   That made sense to me, and it helped me let go a bit.  I don’t feel jealous in the sense that I don’t want good things for others.  I just want something good for my family, too, and it feels like we’ve had our share of adversity although I suppose we could have more.  So, I’m thankful for what we do have.  In truth, it could always be worse.  We could be uninsured.  Could you imagine? I bet some of you could.

I don’t know how to end my emotional rant.  Part of me feels like taking a picture of my bum in skinny jeans and posting it just because I can.  Just to be…cheeky.  ::snicker::  You know what I’ll do? I’ll recommend a cookbook because that’s very Facebook-y.  We are very busy so I like to use my slow cooker, but I really don’t like traditional slow cooker recipes: “Here’s a side of carbs with a side of carbs, some cream of mushroom soup, some cheese, and another side of carbs.” In the end, it’s just not very good.  I recently discovered a stellar cookbook called “The Mediterranean Slow Cooker” by Michele Scicolone.  We have made quite a few recipes from this book (we are even making one tonight), and they have all been excellent.  No cream of mushroom soup here! So, if you like Mediterranean food, lead a busy life, and own a slow cooker? Give this book a go! (Here’s a secret…I used to live on the Med, and some of these recipes are pretty darn authentic!)

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Sad

It finally happened.  It was a matter of time.  I think the few people in our support network are burning out.  Not all, but most.  They are growing weary of hearing about Grace, and, frankly, I’m getting tired of talking about it.  Last week’s email from my friend, the one regarding my absence from Facebook which must mean “our lives must have somehow become perfect and Grace must be all better now” just about broke my heart.  Last summer, I told one of my friends that Grace was struggling with what then appeared to be bipolar disorder, and she simply said that she was familiar with mental illness.  She expressed her sympathy, of course,  but that’s all she wrote.  I’ve not heard from her since; she’s Grace’s godmother, by the way.  We were once the best of friends.  Time and distance have gotten in the way of our once close kinship, but I’ll say this: If she contacted me in any way to update me on my godchild’s health, I would be in close contact.  I would be sending encouraging cards and gifts.  I would want to do something.  I would not wash my hands of the child and the family!

I don’t get it.

I wonder if it has to do with mortality.  A woman I know lost a baby to a rare, genetic disease, and she told me that the most painful time she and her husband experienced was actually after their baby girl’s funeral.  Everyone sent meals for a few weeks after their sweet daughter passed.  People were concerned and wanted to express their sympathy and grief over a life lost before its time.  People, however, don’t want to linger in grief so they move on.  We are not a culture comfortable with discussing death, and chronic illness represents our mortality.  My friend said that two weeks after the funeral people stopped calling.  She and her husband were left alone with their immense sadness, loneliness, and grief.  Everyone else got to go back to their lives, children, and pregnancies.  They, however, had to sit in a house with an empty crib–face the loss and trudge through all the feelings of just having helplessly witnessed their first baby deteriorate before their eyes until she died.

That’s a bit like what this feels like.  Now that we know what’s wrong with Grace–“Your daughter has a schizophrenia spectrum disorder.  The prognosis isn’t good.  I’m sorry.”–no one’s coming around anymore.  They don’t want to hear about what her life is like and what it takes to manage a mentally ill child.  They don’t want to know how she was doing last night at the hospital (She looked like an owl.  It was positively weird.  Her pupils were dilated and she wasn’t blinking.  She took her first dose of Lithium last night).  They don’t want to know that my husband finally realized LAST NIGHT that Grace is really ill, and he came home and cried after he saw her at the hospital.  I wish I had been more sympathetic, but my response was, “It’s about time.  Where have you been?”  Denial is a bitch.  I suppose I am as well sometimes.  People simply don’t want to be reminded of this.  Grace seemed to be fine…until she wasn’t.  If it can happen to her, then it can happen to you.  Who wants to stick around for that somber reality check? Grace’s case manager asks me all the time what I’m doing to support myself.  As her primary caregiver, I’m supposed to be getting support.  From where? The social worker, psychiatrist, and therapist at Grace’s hospital can’t even figure out what kind of therapeutic intervention will best support a kid like Grace.  Where am I going to go then?

I don’t think I’m alone in this.  I know I’m not the first parent who has watched her friends bow out not so gracefully in the name of “That stresses me out!” or “I don’t want to be around that.” or “I don’t know what to say!” or “I just don’t want to hear anymore.” or “It’s not like I can fix it so why bother?”

Well, I’ll just say this.  I don’t expect anyone to fix anything.  I sure as hell can’t fix anything so why would I ever expect that of anyone else? I don’t have a Messiah Complex nor do I want anyone else developing one on our behalf.  Most of the time, I don’t even get off on talking about what’s going on with Grace.  I have to spend a lot of time talking about her with tons of people–teachers, social workers, therapists, and psychiatrists.  I talk a lot, and I’m an introvert.  It takes a toll.  So, I blog.  It helps me process everything.  When I see my friends, however, I want to talk to them about their lives, and I want to talk to them about other aspects of my life outside of Grace.  Grace is not my sun, and I’m not orbiting her although there are days…I want to feel like a woman who has something to do other than take care of her.  Many of my friends who have disappeared assume that I have become one-dimensional simply because I have an ill child.  They assume that I am weak, tired, and overwhelmed.  They assume that I am neglecting myself, that I have let my house go, my sex life go, and that I don’t care for my other children because Grace must be all-consuming.  They assume that I am handling these circumstances as they might handle it.  It’s a complete theory of mind failure!

I’ll admit it.  I was sort of a mess last summer.  Yeah, I forgot to wear underwear.  I wasn’t sleeping or eating, and I don’t know if my husband and I were having sexy rumpus.  I don’t remember! It was hellish, but we’re not there now! We found our footing.

I miss my friends.  I wish they hadn’t disappeared, and I wish Grace didn’t have schizophrenia.  I wish for a lot of things.  This is life, I suppose.  We grieve what we lose and keep moving forward.  It makes the few remaining friendships that I have all the more meaningful.

Still…I think it sucks.

Now, I will share something with you that made me laugh today:

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Even if you miss, you’ll land among the stars. Of course, then your eyeballs will boil and your lungs explode from decompression. But that’s what you get for being a damn showoff.