Wednesday, May 8, 2013

May 8, 2013 - Eighty-two days

About ten years ago shortly after my divorce went through, I took anti-depressants for a while.  My doctor had suggested them a few times and I kept refusing but eventually I went in and said okay, Doc, I need help.  Between panic attacks, no sleep, staying out all night, skipping classes, impulsive behavior and for lack of a better word, craziness, I was truly a wreck.

I worried that the pills would kill any creativity I might have.  They did.  I worried they would numb me.  They did.  I worried they would be hard to live without.  They were.  I worried they would change my brain chemistry.  I can’t prove that last one but I know it took two solid years to feel like myself again.

I tried Celexa – the safest drug at the time for anyone who might get pregnant (in other words, not a nun).  When I went to the doctor with a suspected pregnancy, he warned me to come back right away if I was expecting because he wanted me off those pills immediately.  He said there were new studies saying perhaps they weren’t as safe as previously believed.  Trials can’t be done on pregnant women so the findings have to be done after the fact.  The results were in.

Luckily I wasn’t pregnant at the time so I weaned off them (very slowly and with doctor’s supervision) and haven’t considered taking anything since.

Until yesterday.

I have all the same concerns as before except the root of my symptoms is drastically different.  Years ago I was battling OCD, struggling to pay living expenses, flunking out of school, was estranged from my family and didn’t have a whole lot to live for. 

Yesterday I was supposed to be 37 weeks pregnant.  Even though my son had numerous congenital malformations and problems with almost every organ and system – his death has affected me just as much as that of a healthy baby would have.  I’m sad and angry but that seems pretty normal to me.  It’s only been three months.  I haven’t even reached my due date yet.  Mother’s Day is this weekend.  It’s kind of a rough time.

I explained that all to a nurse practitioner who tried to convince me she was the same as a psychiatrist.  She is not a psychiatrist.  She might have a prescription pad with her name on it, but she is not a doctor.  She is not an MD.  She is not even a licensed therapist.  But her mind was set on me leaving there with a prescription for Zoloft.  I even went as far as saying I would consider Celexa again since it had technically worked in the past.  She said that was her second choice and pushed the Zoloft.

Why am I explaining all this?

Well for one, this is an example of regular life continuing on despite losing my sweet Joe.  I cannot trust that every health professional I meet is going to have my best interests at heart or that they are even listening to me.  I was reminded of the cardiologist who told me he wouldn’t recommend or encourage the surgery Joe needed on his heart because he wasn’t worth saving.  I had a feeling in the pit of my stomach that day and again yesterday.  There were a few things that set me off.

I referred to the death of my son as the reason I was sitting in her office.  I explained that he had a rare genetic disorder and died at twenty-five and a half weeks gestation.  She replied “So you mean he was stillborn.”

She asked me if I thought about hurting myself.  Yes, every fucking day.  It would be a way out of this pain.  But I have a son and husband who need me who bring such joy to my life I can barely stand it.  So I have many reasons to live, I just sometimes want to die when it hurts too much.

“Well that’s not normal,” was her reply.  I kid you not.  I looked at the floor to try and go to a happy place and block out what she had said.  So she bent her little squirrel head around to force me to make eye contact and told me two more times, “That’s not normal.”

She kept asking me if I thought about hurting my son or husband.  No, of course not.  She said no fantasies of killing them so you could all be a happy family.  Nope.  It’s never crossed your mind?  For the last fucking time, I don’t think about hurting anyone but myself but you are coming dangerously close.

Obviously I didn’t say that last part because I figured she might try to take my dog too.

I left her office feeling like someone had violated me.  She balled my life up and told me in no uncertain terms that I was unstable and had to start thinking of my family and what they needed and I was no good to them the way I was.

This is day 82 of my journey as a bereaved mother. If you count the days since I found out Joe would likely die, it’s been 130.  Also since the first doctor delicately hinted that I should have expected this because of my advance age (35).  Also since I was first told Joe didn’t matter. 

I have been through something difficult.

I am in no way saying medication is not a good fix for some people.  But I am functioning.  I am enjoying life with my son, husband and dog.  I am going to therapy.  I go to a support group.  I am what they call ‘doing the work.’ 

You know what would have been nice?  If she had started the session with “I’m sorry for your loss.  I have kids.  I don’t know what I would do if anything happened to them.”

Instead she tore me down more than anyone has in a very long time.

Think someone will give you a break after you lose a child?  Some people will.  Some people on the other hand will not.  She hid behind her clipboard and ignored all my questions.  I want to have more children.  She can’t tell me a medication that crosses the placenta and comes out in breastmilk will not affect a baby’s brain chemistry.  When I asked how kids turn out she said there wasn’t enough evidence to say – we’d probably find out someday and know in hindsight what it caused.

I get out of bed every morning and try to live up to as many obligations as possible - with my family, with school, with teaching self-defense, with general upkeep of friendships.  I am healing.  I am going to trust that my body is telling me something every time I have a panic attack.  That’s not something to ignore.    

This might take a very long time to go away.  What I need is coping mechanisms.  I have a worry stone someone gave me that helps if I rub it between my thumb and forefinger when the anxiety hits.  It helps if I deal with the little obstacles life throws my way even if it means I may act a little inappropriately.  I want to feel some of the pain.  It keeps me connected to Joe.  The day it stops hurting, I would worry that depression had taken me over and maybe I need some pills.  As long as I’m hurting, I know I’m still alive.

It breaks my heart to see H run for tissues when he sees me crying.  I explain to him that I’m sad about his brother.  I think this is a normal part of life.  We did after all lose a child.  It would be abnormal at this point if I didn’t cry.  If I didn’t feel anxious. And if I didn’t feel outraged at someone who tells me I have a chemical imbalance and owe it to my family to take Zoloft. 

I have to wonder sometimes if there are really people who nothing bad ever happens to.  If they will just continue to be uncaring pricks for their whole life.  It wouldn’t change any of the things in my life so I guess it doesn’t matter.  I just wonder is all.

Thursday, May 2, 2013

May 2, 2013 - Eleven weeks

Joe has been gone for eleven weeks.  Twenty-five days from now would have been my due date.  But instead of a ripe, swollen belly I have the tiniest paunch where my baby used to be and an emptiness that will not go away.

I don’t have as much energy to be angry lately.  If you’ve ever watched a NASCAR race there are certain tracks where the cars have steel plates placed somewhere on the engines to make sure they don’t go above a certain speed.  It’s called restrictor plate racing.  I’m living a restrictor plate life right now.  I’m as happy and content with my life as a person who held her dead child’s hand ten weeks ago can expect to be.  I have many things in my life that I love and am grateful for and also this crushing weight on my entire body that feels bolted to me.

As the weeks pass, I feel less detached from Joe.  I am becoming more comfortable when asked to say I have two children. When I was pregnant, there was a sort of surrealism – as though my mind hadn’t fully gotten used to the idea of a new baby in my life.  I wasn’t one of those moms who fell instantly in love when I saw the positive pregnancy test.  I knew the work that lay ahead and I tried to prepare for what would happen to my body.  Since giving birth to Joe and touching him and holding him and carrying his ashes home, I am now free to love him and have a relationship with him – even if it is only in dreams and moments I think he has arranged for me.

There’s a small mall here in Portland, Maine.  The night we picked up Joe from the funeral home, it felt like there might be video cameras in the back of our truck filming my every move, watching for my reaction, some emotion but there was none.  The tiny box was so much smaller than I expected and I did not feel the peace I expected when the funeral director handed it to me.

I couldn’t go home.  I had a two year old who had no concept of why his Mama had just gone comatose so my husband and I decided to let him run around the mall for a little while.  As we parked, I noticed the temperature reading on the dashboard.  It was freezing.  I couldn’t leave Joe in the truck.  I couldn’t take him in the mall.  My husband froze – not knowing what the right thing to say to his wife might be.  The box was too big for my pocket.  If I put the remains of my child in the diaper bag, the box would not be upright and I didn’t want to upset his ashes.  I wanted to go home but H was already out of his carseat.  I just could not leave Joe in the car in the cold by himself.  I had already left him behind at the hospital and allowed the funeral home to take him to be cremated.  I could not let him down again.

It felt like we stood there for a long time before I finally decided, I need to take my sons into the mall with me.  It may be the only time we ever get to go out as a family because God knows, I won’t be removing Joe’s ashes from the house once we bring him home.  THAT would be crazy right?  Even in my shell-shocked state, I knew I couldn’t start carrying this box everywhere I went even though I wanted to make jewelry out of it and never take it off.  Ever.

Dark humor has become a normal part of our lives now.  As we walked into the mall I said well at least I don’t have to worry about the police report we would have had to fill out if someone had broken into the truck.  “Officer, my son has been taken.”  “But ma’am your son is holding your hand.  We only see one carseat.”  “Oh no I mean my other son. Someone stole my other son.  He was in the truck by himself.  Someone must have mistaken him for…”

We laughed in that way bereaved parents do – is it okay for us to find that funny? Should we be laughing at anything right now? Can’t we just enjoy a moment together anymore?

As we wandered through the people who had multiple children, I wondered if anyone could tell the diaper bag on my shoulder had extra wipes, three diapers, a plastic remote and Joe.  I asked J if he thought we had ever walked by people who brought dead family members to the mall with them for the same reason and he said well you look like everybody else right now so maybe we did and just didn’t know.

Maybe we had walked by people before who were in this same hellish grief and we didn’t even realize how painful it must have been to see our healthy little boy with us.  How many women were holding their empty bellies when they saw mine so swollen and healthy with Joe just a week before.  So much grief and sadness and pain and we were just wading through, unaware.  Except now we know.

Honoring the fact that Joe was here and real and died has been a struggle for me.  The silence surrounding the fact that I lost a child just added to the pain.  It felt like people didn’t consider it that big of a deal because he died before he was born.  He wasn’t full term.  He would have been so sick anyway. It’s not like we watched him die.  

Every day when I log in to Facebook there is a new post from Still Standing magazine.  Each post is different but there is always an element of yeah, I get that, to every story.  Moms (and Dads) who had babies die pre-term, at birth, at one year, two years, twenty years or younger than Joe don’t diminish the grief my family is going through.  They just share the pain.  And how they got through it. This whole world I was oblivious to and now it’s a part of my daily life. 

I remember that old saying about be careful what you wish/pray for.  Like if you ask for strength you don’t get it but you get things that will make you stronger. HA! Too funny. Seriously, too funny.