Saturday, January 27, 2018

Last Words

"Well, text or call if you need anything." 

He replied with a thumb up. 

The next morning, I messaged, "How are you today?" but he never saw it.  His last words were in a handwritten note of which I keep a photo in my phone, which is not at all smart as I forget it is there. Whenever I spend time clearing excess photos, it jumps out at me like a monster, frightening me and bringing darkness.  Also, my phone could break.

I have already written a blog about the things I would have said if I had known, but today I became fixated on the last words we say to people at the end of conversations.  We fight with our spouse and passive aggressively text "ttyl" or say "whatever" and walk away.  Or we say even worse things with no passivity, only aggression.  We get so frustrated with our children that we yell "go to your room!" then marinate in our anger for hours.  We have coworkers that we like tremendously but treat badly because we are so stressed with work and deadlines.  We forget to say "I forgive you", "Hey, you did a good job today", or a simple "thank you."

I'm not saying every conversation has to end with "I love you" and this echoes a Garth Brooks song, but what if there isn't a tomorrow?  What would you want your last words to be, either spoken by you or spoken to you?

Although "I love you" would have been better, I am thankful the last words I sent to him were to reach out to me.  

Saturday, January 20, 2018

Down syndome and Moving Forward

I got the trend Ds tattoo of the three arrows facing forward symbolizing the three chromosomes and progress.  It means something great to me, but it also brought pain.

I admitted to my husband today that although I would never take Down syndrome from Trent, I would be lying if said I am not exhausted.  The polite words of "How sweet, you will have a baby forever" when he was born are starting to feel like a curse.  He isn't a baby; he is a 9 year old boy, but in so many ways, he is like a toddler.  And no one, no matter how awesome the toddler years are, wants a toddler for 9 years.  I.AM.EXHAUSTED. 

And I will be judged for being exhausted.  We are not supposed to hate any part of this journey.  We are supposed to be the chosen few mothers.  Most days, I love the club I'm in, but some days, especially lately, I'm ready to have a child instead of a toddler.  I won't even hope for the 9 year old  child.

Currently, I'm trying to teach him how to work the controller of the playstation to watch Netflix or his DVDs.  No matter how much many ways I try to teach it, it just isn't sinking in.  This is a first world problem for sure, but it still hurts in ways I can't explain. 

I am exhausted with diapers, with temper tantrums, with not knowing if he has outgrown his shoes because he doesn't tell me, with not understanding much of what he says. 

He is an amazing kid so full of love; I shouldn't be feeling this way.  As the tattoo symbolizes, I should just keep moving forward, maybe silently.  But really, I'm exhausted.   

Saturday, December 30, 2017

The Earth Circling the Sun

I keep thinking 2018 will magically make my life better.  I feel as though the 8 replacing the 7 will change everything.  This isn't a new thought, is it?  Lots of people make resolutions and wax poetic about the new year.  I know, however, that tomorrow night will not erase my grief, guilt, or mental illness.  Nothing but the date will change.  Still, the earth did circle the sun and that must mean something.   

2017 started off well.  I entered into my last semester of grad school, and I felt proud of what I had accomplished up until that point.  I won an academic award for having a 4.0 each semester, which was a specific goal I had and reaching a goal is always worthy of celebration.

Early 2017 was also a great time of stability in my life.  My medications were working, and my moods were mostly healthy.

Then I got that call in April.  "Your brother took his life this morning."  I actually challenged her and said, "No he didn't."  The tears came.  From that moment, my life halved itself.  I still attended school, and I still tried my best, and while part of me was excited about graduation, most of me was numb and simply surviving.  I graduated in May, and my family took a trip to Universal Studios.  It was a sweet distraction that lasted only as long as it could.  During that time, I recognized that some people are true friends, through any and everything, and some people are there for the good times only.

The summer came, and I found other distractions, some healthy and some not, but all welcomed.  I rediscovered the way writing helps me.  In a short few months, I made and lost a friend who had a deep impact on me.   My marriage fell into a black abyss, and the last vestiges of my stability fell away.  The help I sought was barely enough.

The summer ended, and I began searching for a job, which came quickly.  Working again has been a positive experience.  I have supportive co-workers and supervisors, and I enjoy the job.

These last few months, stability has been returning, somewhat too rapidly to be believed.  The help I have sought is beneficial, and my coping skills are mostly healthy now.  My marriage is floating back to the surface.

I find myself saying "2018 will be better."  Truthfully though, there is no way of knowing, and it is wishful thinking to claim it.    It isn't pessimism exactly, just the knowledge that I have no control over what happens in a year.  All I have control over are my thoughts, behaviors, and feelings in response to what happens, whether good or bad.

I do wish everyone a Happy New Year, especially when it personally means beginnings and a sense of second, third, or fourth chances. I'm still making three resolutions:  To cope better, to read more, and to write more.     

The earth circling the sun must mean something.   

Tuesday, November 7, 2017

Poetry Passing Time

Seeing the Alliterative Psychiatrist

A cedar ceiling and
Color of walnut shell walls
Secrets, hallucinations, horrors are
Told within these neutral nodes
As pitiful people tap their
Fingers, feet flutter
A fox betrays a bull pin
On a box betraying brevity.
Currently, guns gargantuan
Too soon or not soon enough
To talk tactics
Anxiety, like aromatic bread,
Warm raisin, rises.
Some stare, cramped neck at
a smaller box, cartoon caricatures
fake feelings real faces
can't contract.
Dignify my designation so
I can take my turn.
Tell my tale
Land Latuda
Verify Viibryd.
Manage monthly.
Fucking fuck.

Sunday, November 5, 2017

Grieving When You Have Older Children Watching

My husband is home on a two week visit, and even though I have often said I just want him to hold me while cry, I still cry on my own. In theory, I don't really hide it. I usually cannot control the first few tears before I lock the door to the bathroom and sob in the shower or announce I'm going to lay in the bed and "get some of these tears out."  He seems to understand that although I don't want to grieve alone, the outward show of grief is somehow embarrassing for me, and when there are others around, I cannot be true to the grief in all its ugliness.  I need to be able to make noises as I run out of breath, and I need to make those contorted faces that come with the waves that make your stomach actually hurt like a contraction.  The fetal position in a bed isn't pretty, but it is the helpless infant we revert back to.

My husband and my daughter left to go to the store, and I could not join them.  I'm too randomly weepy.

The youngest child is not here, but the oldest is.  My bedroom door was closed, and he knocked.  "Mom."

"What?"  I gargled this word because I had just experienced a breathless contraction in my stomach.

"Can I come in?"

"No, the door is locked."  What I didn't say:  I can't get out of the bed to unlock it.  I don't want you to see my face splotchy, shiny, and wet.  He knows though.

He asked what he wanted to ask through the door, and he got the answer he wanted.  He moved on.

What am I teaching him?  That thought came next.  If I am embarrassed to be seen experiencing this pain, what was I taught growing up?  Or did I not learn this at all and it is more just a personal preference? I think maybe a combination of both, but I also know I need to have a conversation with him and the other kids.  Even if my actions do not match my words, I have to let them know that it is not a rule that one must hide in a room to cry.  There should be nothing shameful in loving others so much that when those others are gone, our face contorts, we can't breathe, and the tears just flow.  I don't know how to bridge that gap of processing this with them and actually showing by example, but I know they are watching. Perhaps the first step is telling, then building up to showing.  Maybe it is tagging them when I share this on Facebook.

I love Chad tremendously and the loss of him hurts me so deeply.  The loss of him brings up earlier losses as well, my mom, my grandpa, my godmother.  I do not want my kids believing that loving someone and losing them means secrecy and isolation.  I welcome suggestions and personal stories of how grief is expressed in your own family. 

Tuesday, October 24, 2017

Sacred Tears, Holes, and Jokes

“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.”
–Washington Irving

“Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell.”
— Edna St. Vincent Millay

I wanted to call him today to tell him that in the shower this morning I randomly remembered a horribly corny joke that our step-grandfather told us when we were kids. 

You are trapped in the jungle with a gun with only bullet.  A camel, snake, and lion are all coming at you.  What do you do?

You smoke the camel, erase the lion, and shoot the snake.

(The joke rests on the teller having an accent when pronouncing "lion.")

I originally did not get the joke; I was too young, but our step-grandfather repeated it for years and one day, I got it.

So today I fell in the hole and the power is flowing from my eyes, which is not to say I have been immensely better.  I just have not been in a hole. 

Saturday, September 16, 2017

Out of the Darkness

This morning was the Out of the Darkness walk for the awareness and prevention of suicide.  I had actually forgotten about it until about 2:00 am this morning.  I was sleeping well but awoke with a start and remembered the walk.  I thought there was no way I would make it; the emotion of it was too great, and I went back to sleep.  At 7:00, Trent and I woke up, and I still waffled about going.  As I sipped coffee, I remembered my friends and family who donated money on the premise that I would walk.  I was positive none of them would fault me for staying home and crying, but I couldn't rest with that thought, and I felt certain I should go.

As I drove to the coliseum, the tears flowed and I experienced an unusual (for me) sense of social anxiety at the thought of walking into a crowd of people by myself.  I was wearing the t-shirt with the above picture and Chad's name with the years of his birth and death.  I felt exposed and raw, as though I was carrying a great ball of pain and holding it out for all the world to see.  I regretted my decision to go alone, and I wished for a hand to hold. 

I was forcibly calm as I walked into the crowds of people, registered, got my t-shirt prize from the money raised, and walked among the tents with brochures about suicide in the elderly, the military, and in the LGBTQ community.   I collected as much information as my purse would hold.  Suicide prevention is now a professional interest for me.

As the ceremonies began, different metaphors and stories brought me back to tears:  the pebble in a pond, the minimum of 100 people affected by each suicide, the memory of a service member who presented her life as perfect, even as she was suicidal.   A young woman in a rainbow shirt held a sign that said "It is okay not to be okay" on one side and "You are not alone" on the other side.  I wanted to hug her and tell her she was wise beyond her years.  Everywhere, people had pictures of lost loved ones, smiling in their frozen moment of time, just as Chad smiles above.  Yet, there was a joyful quality to the crowd, which confused me.

 As the walk began, I was delighted to see we were walking on the beach sidewalk.  At that same beach, I had once spent a day with my siblings.  I was 11 or 12 and Chad was 16 or 17.  I wondered if we had touched the spot I was looking at, if I had begged Chad to wait for me as he went further into the gulf.  Were we both blistering in the sun?  Had we helped our younger siblings make a sand castle?  Had we collected seashells with hermit crabs?  The tears flowed again.

 As I walked, I heard conversations around me.  Many were not about suicide, pain, or lost loved ones.  I felt a bit angry but then noticed their t-shirts gave death dates from years ago.  I was reminded that my loss is still fresh, and that in time, I will be able to walk and think of Chad but not feel so adrift and swallowed by pain.  I will be able to have a conversation about something else.

The turn around point for the walk was near this lighthouse.  Perhaps the metaphor is too heavy-handed, but there was beauty in that.  If we are taking people out of the darkness, we need a lighthouse to guide them back.  The sky was beautiful and the light breeze helped dry my tears.  Each of us can be a lighthouse for our loved ones.

After the walk, I talked with a new friend and couldn't control my tears.  We hugged and she validated that my loss is still so new.  Although I have always thought suicide awareness was a worthy cause, it had never been one of my causes.  Now it is.  I sometimes wonder how many causes I can hold dear, but the heart is elastic.

Another new friend asked if I would be interested in starting a support group on the eastern side of the coast.  I immediately balked at the idea as excuses flooded forth:  I've just started a new job; the kids have all their extracurricular activities; I need a babysitter; on and on.  Then I thought:  A principle in the social work code of ethics is service. When I got home, I read it:

Social workers’ primary goal is to help people in need and to address social problems.
Social workers elevate service to others above self-interest. Social workers draw on their knowledge, values, and skills to help people in need and to address social problems. Social workers are encouraged to volunteer some portion of their professional skills with no expectation of significant financial return (pro bono service).

As a professor once said, "This is where the rubber meets the road."

Next year, I will not walk alone.  I hope to have my siblings, my children, my husband, my father, my aunts and uncles, Chad's children, and many friends.