The Truth about Grief

No matter what I say, how I look, or what I do, I am not okay.  I am almost always on the verge of tears, unable to predict what will ultimately send me over the edge. 

Though I may be out, interacting, and doing seemingly normal things, it is sapping all my energy and all I really want is to be at home buried in my blankets.  I can’t go anywhere without an escape plan. 

No matter where I am or who I am with most of my thoughts are filled with Ariella.  Even if Ariella was never a part of a situation I may be in, I am thinking of her. She never leaves me. In fact in some ways she is more present now than when she was alive because my mind revolves around her.  What she should be doing, what she is missing, what we are missing, the future we no longer have. Every situation, every activity, every single facet of my life I am aware of her absence. No matter what I try to do to distract myself, no matter how distracted I seem, she is there, in my mind, in my heart, in my soul.  

Every single day I beg and pray to die so I can be with her and end this pain.  Even if I manage to have a day with some smiles and laughter. Every time I hear of a fatal accident, or someone that died of a heart attack or freak accident, I think “why couldn’t that have been me?”  I don’t want this new life of mine.

There is no moving on, no getting over this.  I will never get over the death of my daughter. I will never move on from Ariella.  At most I can hope to learn to live with it and come out of this depression that squeezes me tightly in its grasp.  

I am not living, I am only surviving (barely).  I feel like I have nothing to live for and am just existing to get through each day until I can go to sleep again.  I don’t understand the point. There is no point. What is the reason for living if there is no purpose, no joy, when your whole goal is to just survive another day while in the throes of deep anguish?

I suffer from PTSD.  I have frequent flashbacks of Ariella in the PICU.  There is no warning and each time I feel like I’m punched in the gut, I want to throw up, scream, yell, drop to my knees.  I’m not always in a place where I can do that. These are extremely traumatic images and I can’t escape them, I can’t choose not to see them.  My heart shatters again and again every time I see her in that hospital bed, sad and uncomfortable and scared. I would trade my life for hers in a heartbeat.  

Grief is more than just feeling sad.  It invades every part of your life, seeping into the farthest corners of your body and mind.  My body physically hurts, all over. I feel nauseous much of the time. I get frequent headaches.  My body shakes. My appetite changes constantly. From no appetite at all to I can’t stop eating. I can’t concentrate on anything for very long.  I lose track of conversations, stop hearing what someone is saying, lose my train of thought. My brain is in a fog. I can be in an aisle of the grocery store and forget what I am doing there, forget what I am looking for. It’s hard to pay attention to things around me, impossible to multitask.  My memory is shot. I forget to do simple daily tasks, return a text, send an email.  

Any excursion out of the house is fraught with anxiety. I am in a constant state of fight or flight.  Who am I going to have to talk to? Who will I see? Will I have a breakdown? Will I have to tell someone who doesn’t already know?  What will trigger me? I am constantly dodging landmines.  

I am forever changed by Ariella’s death.  I will never be the happy, content person I was before she died. I’m afraid to see who I will ultimately become. 

Regrets

There’s not a whole lot in my life that I regret.  Even before Ariella was diagnosed with cancer we tried to live life to the fullest.  We spent time together, went on vacations, played games, imaginary play (so much imaginary play which I did not enjoy but would give anything to have her begging to play with me now).  Sure we were busy and had to do the regular day to day stuff but family and home always came before work for both David and me.  So I can’t say that I regret not spending more time together or saying I love you more or giving hugs, or things like that because I always did.  I have always known life can change in an instant from losing friends in high school and college and somewhat unexpectedly losing my dad (he had heart issues but I certainly didn’t expect him to die when he did).  I never wanted to be the person who regretted missing time spent with loved ones.  And I wanted to spend as much time with my girl as she would allow.  I always used to joke with her that one day she wouldn’t want me always around, that she would get annoyed with all the hugs and kisses and not want to sit on my lap.  She always disagreed, saying she would always want hugs and cuddles and to hold my hand, and it was true, even at 11 she often held my hand when we were out, she loved to cuddle together in bed, and had not reached the phase where she didn’t want to be seen with her parents.  We certainly saw the pre-teen attitude and eye rolls but mostly Ariella liked having us around.

Once she was diagnosed of course we saw things differently.  We always thought she would beat it but of course the thought was always there, what if she doesn’t survive?  So we did even more. Gave her as many experiences as we could.  Said yes to all the opportunities that came our way.  We did not put her in a “bubble” in between rounds of chemo and instead let her go to the dance studio, have sleepovers, go to Build-a-Bear of course, and do all the things a 9, 10, 11 year old should do.

So no regrets with how we lived our lives and spent our time before and after cancer.  But I do have a couple regrets and they are big ones.  I regret not trying to cuddle more with Ariella when she was in the ICU.  It was pretty challenging because of the vent and tubes and they said I could not lie in bed with her (I regret not fighting that too) but we both were aching to give each other hugs and just couldn’t.  I regret not trying harder to give her physical comfort.  I regret not trying harder to wake  her to hear me when she was so sleepy but not yet under actual sedation so she could hear me tell her I love her and goodbye every time I left the room, especially to go home.

But the biggest regret, and I know I am going to get all sorts of arguments and comments about this, is choosing to do the bone marrow transplant.  It was not guarantee of a cure, it is not standard treatment in sarcomas (it was a trial), and she was currently no evidence of active disease and having a good quality of life.  Of course we don’t know if the meds she was on would have kept the cancer at bay but I am certain she would have lived longer and would have had a better quality of life.  If she did decline due to cancer we would have actually been able to tell her goodbye, she could have told us her goodbyes, we could have gotten more hugs and kisses. She could have been made comfortable but maybe not as scared. Instead she had 2 of the crappiest months a child could have, only being able to communicate by writing, not being able to eat or drink, being uncomfortable with complication after complication, not being able to say goodbyes or know or be aware of the love that was surrounding her at the end.  She was scared she was going to die.  We never promised her she wouldn’t.  But we redirected and instead just tried to reassure her that that the doctors were doing everything they could. While of course we were worried about the same thing. Cancer is traumatic.  A dying child is traumatic.  But there is so much more trauma with the way that Ariella died than I can ever put into words and I will never not regret doing the BMT and nothing anyone says will change my mind.  The 3 of us walked into Hopkins together hopefully optimistic that the BMT would keep the cancer from coming back.  But only 2 of us walked out.  Wasn’t worth it.  It’s this, this is what plagues me a good amount of the time.  The actual medical and emotional trauma Ariella went through and that we went trough watching it. The not only not being able to help or comfort your child but feel like you’re the reason she’s in the pain and discomfort. I know we made the best decisions we could at the time given the information we had and we thought we were acting in the best interest of Ariella and everything else everyone is going to say about blaming ourselves.  Intellectually I know it.  But the regret will always be there.

As I said at the start, I don’t have a lot of regrets.  But I can’t let go of the one I do have.  And I’m sure I never will.