Holland versus Italy

I recently reread the poem "Tulips in Holland", by Emily Perl Kingsley, an allegory for the experience of raising a child with a disability.  Just like every time I read it, it brought tears to my eyes.  Though the beauty of the poem and the power of the allegory make the poem amazing, they do not cause my tears.  What makes me cry is this profound truth, "The pain of that will never, ever, go away, because the loss of that dream is a very significant loss."  And painful it is.  I never once imagined watching my children suffer through mania and voices, having them isolated from their peers and envying "normal" families with their well adjusted, well behaved "perfect" outings.  The truth is, sometimes it is hard to see the bright side of mental illness because there is little brightness to be seen.  People who suffer from bipolar disorder have a higher rate of suicide than the general population, approved medications for childhood bipolar disorder have no long term impact studies, and the symptoms of both bipolar disorder and schizophrenia can often lead to risky or illegal behaviors.  Sometimes arriving in Holland instead of Italy doesn't mean just seeing different sights, it means that the sights you have to see are really unpleasant.  It is tough at times to keep any hope at all in the face of illnesses that are chronic, powerful and cause such disruption of daily life. 

So the best I can do is to search really hard for those darn tulips that the poem talks about.  Some days they jump out at me and some days I seem to search in vain.  Just when I am about to give up, my boys show me that there is joy in the hardest circumstances.  Today Ryan said hello to a teacher he did not know at his school open house.  Bryce made an apology card for his brother without any prompting.  Neither one had a meltdown and our evening was calm.  I got hugs and kisses from them both.  Those tulips look fantastic to me!

Who am I?

If someone were to ask me, "Who are you?" I could answer so many things.  I am a mom and a wife.  I am a daughter, a sister, an aunt, a cousin.  I am a teacher, a reader, a TV lover, sometimes a cynic and even a semi-reluctant runner.  I am so many things: different things to different people.  How I label myself, the things I say and think about myself, define who I am.  They are self-fulfilling prophesies in a way.  If I say to myself that I am strong, and repeat it enough times, eventually I will believe it.  That's how I made it through the first few years of my husband's hospitalizations and diagnoses.  The power of words cannot be understated.  The words you hear, the words you believe, become internalized.  So what are our children hearing and believing?

In my case, what I say and what I believe are two separate things.  This was brought clearly to my attention when I was talking to another mother in a NAMI support group the other night.  After sharing that my two boys "are bipolar", I listened to her talk about her son who is struggling with schizophrenia.  Struggling with....not identified as.  Talk about a wake up call!  I would never identify myself as, "I am OCD."  I have OCD and sometimes it impacts my life.  I take medication to combat the symptoms of my OCD but I am NOT defined by my OCD.  So why am I defining my children by their illnesses? 

I love my children unconditionally and accept them in their uniqueness.  That is the message that I thought I was giving them.  Now I wonder if that is truly what my words have said.  When Bryce asks me if his bad dreams are because "I am bipolar" does that mean he now considers an illness as his identity?  Have I, in my attempts to be open, honest and accepting instead been labeling and limiting?  It struck me, listening to this mother in similar circumstances, that with my careless choice of words, I was defining my children by their illnesses. 

So, who am I?  From now on, I am a mother who is more careful with her words.  I am the mother of two children who struggle with bipolar disorder. Perhaps by changing the way I identify my children I can lead them to place their disease as separate from their identities.  One day, when someone asks them the same question, I hope that they can answer with power and without the weight of illness coloring their sense of selves.

Nothing says holiday like meltdowns and tears

Looking back I take all the blame.  I really should have known better.  We had tried fireworks when my youngest was a toddler and it did not go well.  For the last five years fireworks have been something that we watched on TV or saw go off in our neighborhood.  But this year, I really wanted to feel that sense of amazement.  I wanted to share with my children the traditions I was raised with.  So I convinced my husband, warned the kids, and packed a blanket.  Bryce was so excited he didn't stop talking or moving for the hour and a half before it was time to go.  My brain was already vibrating with stress but I was determined.  At 8:15 I herded the boys into the car.  The first sign of resistance came before we left the driveway.  Ryan had his blanket out and was sucking his thumb. 

Ignoring the constant talking from Bryce, Ryan curling into the corner of the car and my husband's obvious reluctance, I told myself, "It will be fine.  They'll chill out."  I had chosen the local ballpark wrongly thinking that the parking lot further down the street would be a quiet place to see them from a distance.  Apparently about 1,000 other people thought the same thing.  We had to move across the street and search for parking among the throngs. 

We parked and Bryce and I jumped out.  Ryan climbed into the trunk and curled into a ball.  By this time I was unaccountably frustrated and stomped off with my youngest to stake out a spot.  My husband stayed with Ryan to calm him down.  Spreading out the blanket, I sat down in a huff.  Bryce sat down next to me...almost.  Actually, he sat on his knees, then lay on his stomach, then crossed his legs, then got up to get the water bottle, then...well, you get the point.  The fireworks had started but Bryce had wandered off to find my husband.  I followed him with all our stuff back toward the car where we found Ryan curled up and rocking on his dad's lap in a quiet patch of grass out of sight of the fireworks.  Brimming with frustration I snapped to my husband that we should just go home.  Right then Bryce decides he needs to go to the bathroom.  Before either of us realizes what he is doing, he has started to pee in the bushes on the side of the industrial building we are near.  In clear view of crowds and security cameras.

We packed up the kids and the stuff and headed home.  My husband was philosophical about it all.  I, on the other hand, cried most of the way home.  What was wrong with me?  What had I been thinking setting my children up for failure like that? 

I was grieving.  Again.

I was brought up on fireworks for the 4th of July.  I have memories of going to an outdoor pavilion, suffering through "boring" music played by a live orchestra and then reclining on a blanket with my family oohing and aahing over the bombs bursting high.  I didn't appreciate it at the time, but those fireworks make up a large part of my expectations for a happy Independence Day.  I didn't realize how deeply these memories were planted in my psyche until our 4th of July debacle.  Just like when the boys were diagnosed, when we had to hospitalize Bryce, when Bryce was taken out of regular education and so many other moments, I was giving up another dream.  And it hurt.

My children will never lay on the grass and see the majesty of live fireworks and that just sucks!  What doesn't suck is that they won't miss it.  You can't miss what isn't important to you.  You can't miss something that makes you miserable.  So, I put on my big girl panties and dried my tears and decided that next year we will be buying fireworks.  The kind that isn't loud and can be done right in our comfort zone - our driveway. 

A no meltdown day

All parents celebrate the great accomplishments of their children.  First place at the swim meet, chosen for the soccer team, straight As on their report card.  Celebrating our children's victories makes us feel proud, joyful and builds those great memories.  So what do you do if your children aren't interested in sports, struggle in school and don't like or can't handle group activities?  You find different things to celebrate.  Two days ago my boys had a tantrum free day.  Doesn't sound like much of an accomplishment, but in my household it was a huge one!  So, I celebrated.  Bryce and I danced in his bedroom and I praised the boys up and down, telling them how proud and happy I was.  Most importantly, I tucked away those precious moments in my memory for all the days to come when tantrums are the norm.  All Hail the tantrum free day!!!

Which nut are you?

We have a joke in our family.  We call ourselves a mixed bag of nuts.  My oldest sometimes claims peanuts, the youngest an almond, my husband a macadamia and I am a walnut.  Seems kind of silly unless you consider that, according to most people, my family defines the word "nuts".  Between the 2 boys, my husband and myself, we read like the DSM 5 (which my husband loves to read in his free time...strangely enough).  At any time in my house you may see calm, happy people or witness rages with holes made in the wall, thrown toys and amazingly creative swearing.  Ryan may have retreated to the cabinet beneath his bed or Bryce may be talking a mile a minute.  Cory may be sleeping off the voices or Bryce crying because he cannot make them go away.  I would love to say that I would be the one holding it together but, often enough, I am yelling, crying or eating my way into a better mood.  Sounds horrible right.  No, not really.  I would not trade my family for any other family in the world.  They are amazing, especially the strength and courage they show every day.  We are a multi-diagnosis family and we manage to make abnormal seem almost routine.  It is not easy.  For certain, I would not choose this for my children.  But, we do it.  What choice do we have?  We claim the label.  We are a mixed bag of nuts.