What We Weren't Talking About

When my 10 year old bit the concrete at a water fountain, I posted a picture of her busted lip and chipped tooth on social media shortly after we left the urgent care center. When my son had an enlarged lymph node the size of a golf ball on his neck, I posted on social media after a couple days of no definitive answers from the doctors.  And when all 5 kids got sick with a virus that didn't' seem to be getting better on it's own,  my husband "checked in" on Facebook  from the pediatrician's office's waiting room. Each time family and friends offered prayers, encouraging thoughts  or a sympathetic word.

When our oldest began to miss so much school because of her anxiety that she had to have a teacher come to our home, we kept it quiet.  Months later when she was hospitalized, we didn't even tell our families until several days later.  Nor did we mention it when my husband took her back to the hospital during our spring break, or the following weeks when wshe was in an outpatient program. When our 2nd oldest was hospitalized a year after the first,  my husband finally shared with our parents and siblings what was going on.  And this past summer, when our oldest was back in the hospital, those on social media were none the wiser.  In fact,  the busted lip I mentioned,  the one that I thought nothing about posting,  happened the day after the oldest was released from another stay in the hospital.  

During the past three years,  I've watched others share their healthcare struggles on social media.  I was invited to Facebook groups or pages set up to keep everyone up to date on the current conditions,  treatments,  set backs, and goals met.  I saw Gofundme pages and blogs shared about strangers dealing with life threatening illnesses or injuries.   I got notices from websites like Caringbridge that were set up to streamline getting information about a loved ones health condition.   Sometimes I'd stay up late reading pages of some stranger's story about nursing their child while dealing with a particularly bad day,  or how they celebrated the smallest victories on  a good day.  Sometime,  my heart twinged a little as I saw whole communities showering them with love or the beautiful relationships they seemed to have with their child's caretakers.  I was searching for some sort of example of how you take care of a child who is sick.  Although I gained inspiration from these stories there was also a loneliness for me.     Where were the blogs about taking care of a child with severe mental illness?  Where were the stories talking about the hopelessness,  guilt and failure a mother feels when she leaves her child at the hospital knowing that she only gets an hour every other day to visit?  Where were the Facebook pages that showed me the kinds of ups and downs I was going to experience with every med change or new therapy we tried?

The good news was that eventually, I began to find people with stories similar to ours.  We whispered in a quiet corner at a Halloween party or the foyer at church.  I had  found it was too hard to keep completely quiet about what was going on at home.   As I began to open up just the slightest about it, the stories began to trickle in and eventually it even  led us on the path to the therapist and psychiatrist that would help more than the previous ones could. The new therapist suggested we also join a parents group.  Although,  small and private,  there was relief in knowing that there were other families like ours.  They were smart,  kind,  devoted parents, many with strong religious convictions and they were just as blindsided by mental health issues as we were.   None of them seemed the least bit like they would have been a guest on the Jerry Springer show or have TLC series about them.

For a while now I've known the answer to the question was for me to share our story.   I've spent hours over thinking things.  Do I share on our family blog?  How can I talk about my kids issues without it coming back to haunt them on future job applications?  What parts our mine to share? How do I balance trying to speak out about stigma while respecting my children's wishes?  What if they're ok with what I post now but regret it in the future?   It can be terrifying.  If my kids have taught me anything though,  it's what bravery looks like.   I hope as I share our story,  that others will feel less scared to share their stories and that one day,  we will treat mental illness like any other.

The Witching Hour

Tuesday evenings are the worst.   My oldest daughter has group therapy across town while my twins have ballet in the other direction.  By the time we get home it's  already 7 o'clock, leaving an hour to eat,  do homework and get the elementary kids in bed.  I immediately walk into the house and start a pot of water boiling.  My 10 year old sous chef  grabs pasta and sauce from the pantry as I begin frying meat.  My 13 year old takes our return as a her cue to quit her online school work,  work that should have been finished hours ago but it is never that easy for her.  I ask the teens to clear the table of all the things 7 people have temporarily set down over  the course of the day.   Something is lost in translation and they take this to mean it's time practice their martial arts skills in the middle of the kitchen.  My son walks in and is eager to join his older sisters in ninja practice.

 I remember when my oldest was a baby and battling colic, when  I still read parenting books,  reading that this time of day was called "the witching hour."  One theory as to why infants were so distressed during this time of day was that they could pick up from the stressful energy of the family. This energy seems to be a constant visitor to our home.  I don't remember inviting it and it always seems to come at the most inconvenient times.  I feel it's presence and my body tenses.  The tricky thing with this energy,   he will not be forced to leave, but  must be quietly escorted out.

Somehow,  after several re-directions,  the table is set just as  my husband walks in from a long day of work.   It's a rare case  that all of us are home for dinner.  My husband is in town and my oldest is home from night school because of her earlier therapy group.  The energy is the 8th guest at our table. The prayer is said,  we start dishing out food.  I'm amazed at how quickly the food disappears from the pot.  It seemed like only a few months ago the same amount provided leftovers for lunch or 2 the next day.  I don't complain,  it's good to see that my picky eaters are getting more adventurous and my oldest is eating again.  Before her most recent hospital stay her diet consisted of spoonfuls of peanut butter and protein shakes as I constantly worried that she was withering away.  Our dinner guest feeds only on our collective stress and goofiness.

Neither my husband nor I welcome the energy,  however the kids all seem to think he's an entertaining dinner mate.    He urges our son to make slurpy noises with his spaghetti and my 13 year old to continually get louder and louder as she talks over others.    My 10 turns into Owl from the Hundred Acre Wood as she starts giving us a history lesson based on what she learned in school.  The teens continue to make witty quips at every comment.  The energy sits back and watches as his work begins to unfold.   My husband tries to remind my 13 year old of her volume and to take back the conversation from the intruding dinner guest.   For a brief moment it looks as if he has stood his ground.  And then,  my 10 year old begins to to bark.  Like a wolf cub, her cheeks puff up and deflate in short quick cycles.     The high pitch matched only by it's volume, "Woof, woof,  woof,  woof."   The 13 year old bolts from the table and escapes outside.  My husband's jaw tightens and his fists clench around his utensils as he braces himself for the upcoming rounds.    I start to push the chair from the table but my oldest  beats me to it "I'll go" as she heads to the front porch to check on her sister.  The rest of us sit in silence.  Disappointment and exhaustion flash in my daughter's eyes as she begins to give into the next set of howling tics.  The dinner guest smiles as he watches his work pay off.

During a brief reprieve my husband asks my 10 year old if  she understands why her sister has left the table.  She nods yes.   Ironically,  the sister who best understands her plight with Tourettes Syndrome also has a Sensory Processing Disorder.  Although she can relate to her sisters frustration of having tics that she has little control over,  she can't be there for her in this moment. Her brain is unable to categorize the loud bark as anything but immanent danger.  Her primal instinct of fight or flight has kicked in.   The 10 year old understands and it weighs on her even heavier.

She begins another set of barks.  Her twin reaches over and nuzzles her like a kitten as she strokes her cheek.  She is unphased by the volume or the pitch of her sister's barking,  focused only on comforting her sister like only a twin can.  The healing touch of a sister's hands works like magic and I begin to see my daughter's face relax as the barking slowly becomes quieter and more sporadic.  The rest of the family manages to finish dinner while ignoring the few remaining barks.  The teens outside sense the coast is clear and return.  They come in to finish their dinner,  the 13 year old stops to hug her sister and apologize.  As the they sit down to finish their meals I realize that our guest has left us alone, at least for this night.