Liam needs glasses and I killed you.


Ronan. I kind of slept last night. I was restless, but I fell asleep for a few hours, here and there. Your Daddy said I was up and down all night. I don’t really remember, except I woke up in Quinn’s bed. I didn’t send your brothers to school today. It was a half day and they both had an eye doctor appointment at 10:15. We all slept in until 8 or so. I got up, prepared to get ready for the day I knew I had to face. Our Lovie called. I bawled about how I was taking your brothers back to the same doctor, that sent us to PCH for your CT scan. I told him I didn’t know how I was mentally going to do it today. I got a little pep talk, but that didn’t stop the tears. I wiped them away, I fixed my face as best I could and threw on my sunglasses so I wouldn’t freak your brothers out. We drove to Dr. Cassidy’s office. I don’t know how I got us there as all I could think about was driving you out there for the first time, before we knew anything was wrong. I cried most of the way. I am good at hiding my tears when I need to though. Liam and Quinn didn’t notice. We stepped into the office, I filled out their paperwork and we sat and waited. There was a baby boy, about a year old, sitting on his mama’s lap. He kept looking at me and waving. I waved back, smiled, as the tears just poured down my cheeks. He wouldn’t stop smiling and waving at me. His Mama must have thought I was a lunatic as there was nothing I could do to stop the tears. Your brothers saw. They were in full force and I couldn’t hide them while we sat in that waiting room today. We were soon called back. Dr. Cassidy’s Assistant came to do your brothers exam. He asked a lot of questions. I was on auto pilot. The word Chalazion came up as one of your brothers eye lids looked puffy. I just laughed out loud. He asked if I was familiar with what a Chalazion was.

Here was the answer in my head:

“A Chalazion…. why yes. It was what my 3-year-old, was supposed to have  had, which was causing his eyelid to look droopy, which is why we came to see Dr. Cassiday. Well, it turns out, it wasn’t a Chalazion, gosh darn it. It turns out, my 3-year-old had Neuroblastoma, and he is now DEAD. So yes, I am quite familiar with that word.”

Here was my real response: (Insert teary eyes, and fake smile here) “Yes. Yes, I am.”

Boys got their eyes dilated next. Which took me back to being in Dr. (insert name that rhymes with witch here) Robinson’s office. The lady with the not so nice bed side manner whose appointment I walked out of because she was that awful. The lady who dilated your eyes and then made some rude comment about not wanting to listen to you fuss about it so we would have to wait out in the waiting area. We didn’t wait in the waiting area. I grabbed you, stormed out of her office and put you in the car. I called your Daddy and he told me I was crazy, that I would never get another appointment  so quickly because nobody would see you in such a short amount of time. I sat in the parking lot of Liam and Quinn’s school, panicking, googling another Children’s Opthamologist, and found Dr. Cassiday. They didn’t want to see you until September. I screamed and told them that was not acceptable. I needed to get you in, that next day. They listened.

Fast forward, a little more than a year later; and I’m back in his waiting room, with your brothers, and you are dead. I thought I was going to have a panic attack. The voices in my head were screaming, “What were you thinking!? You idiot! You can’t handle this! Why didn’t you have someone else bring them?” Then I remembered. I remembered why I brought them today. Because I am their mom and that is what mom’s do. I didn’t get to be their mom, for all those months. I have to start acting like it again and if it means I have to walk into the same eye doctor, that we saw… then I just have to do it.

We saw Dr. Cassidy. I don’t think he remembered me. It was dark when he came into the room. He told me it was nice to meet me. I told him that we had met before. Those are the only words I could get out of my mouth. Such a nice man. I did not want to get all upset in front of him and your brothers. I did not want to remind him that he is the one who came to PCH, in the middle of the night for us, to read your CT scan. I did not want to remind him that I looked him in the eyes and asked him if you were going to be o.k. He told me, yes. As he should have. He didn’t know what we were up against. I did not want to tell him, that you had passed away. I could not sit and say those words today. So, I didn’t. I listened as he told me Liam needs glasses. I requested a CT scan for Quinn, because he has been having headaches. He said he would set it up for me. I get to play the overly paranoid mommy role now because I am convinced that both of your brothers have Cancer and are going to die, too. It’s an awesome feeling to live like this, Ro. Just wonderful.

We left there, all upset. I was upset for the obvious reasons. Liam was upset about having to get glasses. As I was backing out of our parking spot, crying, crying, crying; I looked in my rear view mirror. Liam threw something at my head. He was crying and yelling about how he was not going to wear glasses. His exact words were, “IF YOU MAKE ME GET GLASSES I’M GOING TO TAKE THEM HOME AND STEP ON THEM UNTIL THEY BREAK!!!! AND THEN IF YOU MAKE ME TAKE THEM TO SCHOOL, I’M GOING TO THROW THEM IN THE GARBAGE CAN!” I could not help it, but I started dying laughing and could not stop. This coming from Liam; my little rule follower, my easy as pie, independent, does whatever you ask of him and does it happily. He was throwing the biggest fit and it only made me think of you. I could not stop my fit of giggles, but I was trying so hard to play the “let’s settle down and discuss this role.”

Quinn took over instead.

Quinn-  “Liam, those glasses looked nice on you. You will be able to see better.”

Liam-  ” I don’t care! I don’t want glasses! Nobody in my class wears them, they looked stupid!”

Quinn- “Liam, they looked nice on you. They looked better on you, than me.”

Liam- ” I don’t care!!!! Glasses are dumb!”

I took over from here, after I got my laughing under control. I got Liam settled down for the time being. I took your brothers to Chick-fil-A, for lunch. We came home after that and they were tired and their eyes were still dilated. Quinn asked if I would lay down with him. I said sure and we snuggled up in my bed and passed out for a couple of hours. All that crying, wiped me out. I held his hand as we slept, just the way I used to hold your yours. I woke up, feeling strange for having have slept in the middle of the day. I felt disoriented and it took me a minute to realize what exactly I was waking up to. I expected to find you, playing with your brothers. Once I remembered what I was waking up to, I felt like I had been hit with a ton of bricks.

I had to get to Dr. Joanne’s office for our session today. Papa came over to watch Liam and Quinn. I was crying before I even pulled into her building. I gathered up my notebook, with my “homework.” I walked into find her in the front office putting some things away. She hugged me and we headed back to her office. She had a little treat for me. A picture frame that came with a big magnet that attached to it. It said, “Rockstar.” So sweet and thoughtful of her. We jumped right into where we left off last week.  I told her all the things that have consumed me all week long. The panic attacks again. The guilt, sadness, shame, regret. How everyone I love is either, sick, dying, or going to leave me. You left me, so why shouldn’t everyone else? We talked about each one of those things, in depth and where they were coming from and what they were about. The real reason they are there. I told her I killed you. I told her I promised you I would save you and that you must be so mad/sad/lonely/hurt that I didn’t. I cried almost the entire time I was there.

You know one of the things I appreciate most about Dr. J? There are so many things, but one of the things that sticks out the most is when I fully break down, and go to the darkest of dark places, like telling her that I think I killed you… she doesn’t tell me I didn’t, like everyone else does. I’m sure she thinks it, but she doesn’t tell me this. She lets me feel it, she let’s me talk about it, she let’s me cry about it, she let’s me say it until I’m blue in the face. I know why she does this. It’s because she knows what it’s like to feel the exact same way that I do. Like she killed her baby, too. She’s felt the exact same way I am feeling right now, and she knows the answer is not to tell me I did not. She knows the answer is giving my time to feel this, believe this, and hopefully, I’ll finally come to a place, where I don’t really believe this anymore. She knows it takes time to get to that place, and I will get there when I’m ready. But she knows I’m not going to get to this place by being pushed by anyone. I’ve got to get there, myself.

I left her office, with a slew of books and some tough homework assignments. I left there feeling as if I had just had an exorcism. I looked down at my phone and it read 6:30 p.m. What the hell, I thought to myself. I had been there for over 2 hours. No wonder I felt so exhausted and beat down. It was worth it. I feel somewhat peaceful tonight and sleep might actually happen. We shall see, my little one. I’m going to go now, Ro. I miss you, I love you, I hope you are safe. I am so, so, sorry I couldn’t save you. I hope I can forgive myself one day. I love you, my not spicy monkey. Sweet dreams.

xoxo

I’m leaving you all tonight with something Dr. Joanne shared with me that she had written. I sat with my eyes closed as my tears just poured and I listened to her voice. I sat there and thought, wait, did I write this? How did she get into my head? Everything she read to me tonight, was if she had taken the words out of my soul and put them on paper. Except she does it much more eloquently than I do. I am so thankful for her sharing her words tonight. In a place that feels so lonely, it is nice to sit across from someone who really does get it. As much as I wish that she didn’t; I am thankful that she does. For those of you who don’t understand, because, thankfully, you have never lost a child, Joanne’s words could not explain the feelings that come with it, any better. Thanks, J. You are one of the most amazing gifts to this world.

 

I waited a long time to watch the film The Rabbit Hole. It was intentional. There was too much media frenzy around the film, and I wanted to allow that to settle, wanted to be clear and present with the film in an unadulterated way.


Disappointedly, the film didn’t move me. I shed a tear, maybe two, but there was an emotional lacking for me, an inauthenticity in Kidman’s character with which I simply could not relate. But of course. How could a Hollywood actor possibly capture a mother’s grief? It reminds me of a myth I’d heard long ago about Michelangelo’s Pieta; he was hesitant to sculpt Mary’s face for fear he could not possibly carve, with requisite honesty, the pain of a grieving mother.

After the film, I contemplated the many movies I’ve watched since my induction into bereaved parenthood in 1994. Many depicted traumatic death, and some even child death. Yet, none of the Hollywood enactments resonated any degree of substantive authenticity.

Tonight, I watched The Greatest for a second time. The first time I watched it, I found it to be one of the most sincere portrayals of parental grief and, though it still felt inadequate, I noticed that some memories unearthed during the second watching. Memories of the real storywhich had fallen victim to an ad hoc amnesiac state, but which were rapidly resurrected. These memories evoked powerful emotions tonight.

So, what is the real story- the one I wish Hollywood would tell- so the non-bereaved could really experience the truth about grief after the death of a child?

– I wish they would tell the story of how every single cell in our body hurts. Literally, it hurts from tip of our toes to the ends of our hair. The pain is indescribably physical and as merciless as the Mayan heart sacrifices of its helpless victims.

– I wish they would tell how difficult even basic bodily functions are: drinking becomes work as our throat is constantly tight and closes off to water, or food, or oxygen, or sustenance. Or how we are unable to carry groceries or the mail or the sadness in our arms as they ache with the phantom weight of our children. Or how we cannot breathe because of the concrete slabs on our chest, heavy and dense and gray. Or how our legs buckle and we cannot bear to see other children, especially the ones who are their age and with their names walking gleefully with their parents; parents who may or may not take a moment or two for granted but who will tuck them into bed tonight as we lay sobbing, our salty tears saturating the shag carpeting, in our dead child’s room.

– I wish they would tell the story of how, on the rare occasion when we do sleep, we awaken in the morning, nearly every morning, wishing we hadn’t.

– I wish they would tell the story of how we look in the mirror at our unrecognizable self every day and wonder at the stranger we see. And how every relationship in our lives change, even our conflicted relationship to the imposter-self. And how all the others- family, friends, colleagues- want us to be the person we were previously, but we know that person is irretrievably lost.

– I wish they would tell the story of how our primal mourning is most often done alone and that the supernatural sound of this mourning frightens us, like an wild animal being killed and eaten or like the flogging of human flesh or like the torturing of a prisoner or like Satan being cast from G*d’s presence.

– I wish they would tell the story of grief’s incessant state of craze: pacing the hallways late at night, the inability to focus on anything, the intolerance of music, or laughing, or expressions of joy, sensitivity to lights and other benign stimuli, racing video tapes that replay in our heads as we wish-for-changed outcomes, the constant self-accusations of blame and responsibility, the unconscious roulette of risk with Death as our challenger.

– I wish they would tell the story of how we are terrorized by insidious ruminations of our other children dying, and we either over-protect to maintain illusory control or under-love to maintain illusory protection from recurrent grief.

– I wish they would tell the story of the dark and ugly thoughts about other people and their happy and naive lives. Or how we become fierce imaginary protectors of children who are neglected, or unloved, or scolded, or abused by their “parents”.

– I wish they would tell the story of how a mere turn of a corner in the grocery store that confronts us with baby food, or car magazines, or cereals can unhinge us to the point of utter helplessness and madness, frantically abandoning $200 worth of unpurchased frozen foods for an exit sign .

– I wish they would tell the story of how this brings us to our wounded knees. On the floor. Face in the dirt. Begging and pleading for a different life. Willing to do anything, anything to turn time back and go through another door. Or how we fantasize about time machines and contemplate self-institutionalization.

– I wish they would tell the story of a pain so deep and so wide that no word in the English language can begin to express it. That no subsequent child, no new job or house, no distraction- no pill- no drug- no G*d- no joy- no self-induced suffering is sufficient to fill the chasm of the loss.

– I wish they would tell the story of how we pray, even in the absence of a belief in a Creator- we pray, that the suffering would end, by any means.

-I wish they would tell the story of how well-meaning others cause us to recoil with their platitudes and mindless remarks about G*d’s will and His garden, the one which needs tending, and something idiotic about making lemonade.

– I wish they would tell the story of how this mother and that mother and this father and that father would have given their life in a moment to save their child, and that we continue to negotiate that with a G*d in whom we may or may not believe for months or even years.

– I wish they would tell the story of how life goes on but that everything has changed, and that we have died in a sense, and must choose to be reborn.

– Mostly, I wish that they would tell the story of a bittersweet survival that does not include a fallacious or contrived “end” to the grief after a prescribed six months. This is not reality for most of us. Yes, I wish they would tell a true story of the anguish absent the “happy” ending. Not that we, at some point, aren’t capable of pure love and joy and contentment. In fact, having really “looked into the eyes of such sorrow” is the only way to such pure joy, as Gibran says. But there is no bypassing the tortures of child death, it’s effects perennial and relentless for much longer than the unsuspecting world believes.

And there is so much more I wish they would tell.

I wish they would tell the story because I wish others knew. Certainly, if the others knew, they would have to be kinder, more compassionate, more loving to bereaved parents. Wouldn’t they?

Wouldn’t they?

Yet, I find even my own words fall woefully short of the real story.

As the Michelangelo-myth goes, some things cannot be expressed in sculpture or form or film or with words. The real story is one we can never truly tell.


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16 thoughts on “Liam needs glasses and I killed you.

  1. Hilary

    Just to say that I wish neither you or Dr Joanne had ever had to think, write, or say these words. That said they help those of us who are lucky enough to have our gorgeous babies with us appreciate your devastating loss and your need to grieve and live in your own way and in your own time. But of course that does not mean that we will leave you to get on with it alone – I just hope we all open our ears and eyes, to listen, see when you need us and hold you in our hearts and minds always. I hope the birds sing for you today. Big hugs. xx

  2. Katie

    I had the same reaction as your sweet Liam to glasses! I felt like such a nerd. I was eight. You tell him he is lucky he was not eight when I was because glasses have come a long way. I am now 32 and I embrace my nerdiness. Be as gentle as you can with yourself amazing Maya.

  3. Laura

    Wow! Well written powerful words. It really puts most thinks in perspective. I hope today is a much brighter day. Our thoughts prayers and love goes out to your entire family.
    Boys in glasses are like Clark Kent or Harry Potter, they contain magic inside.

  4. sheryl mobley

    Maya, I feel so proud to know you after reading this blog. You are smart to be going to counseling and working through this (as terribly painful as it is). I can only imagine you would want to grieve the rest of your life and live in a depression and never recover, just so you don’t forget, so you can keep punishing yourself. But, you are strong and you’re staying strong for your husband and kids, who need you and who love you. It’s good to hear that your plan is to live a happy life and work through the pain. Your stories are inspiring to me and to many people (especially ones who have similar grief). XOXOXO

  5. maureen

    Dear Maya- I have written to you once or twice before, but follow your blog every day that your write. I find you to be a true hero in the sense that every day you get up and fight the fight of living without Ro, so that your twins do not suffer as much. Because of your endless energy to find a cure for childhood cancer, you have inspired me. I have worked in a pediatric hospital, so I have seen the joys and pains of parents and their poor children that are there suffering. I too would like to take up the cause to find a cure for childhood cancer- you have inspired me to run my very first 5k- I hope that this one will lead to many others to support causes such as childhood cancer. Because this run takes place on Oct. 29th, costumes are encouraged. I am planning on wearing a purple tutu in Ronan’s honor. You may not (and probably do not) feel very inspirational right now, but believe me, you are- I truly think your blog has opened the eyes of many many people. If anyone can raise awareness and fight for a cure- it will be you. Thank you again….love to you and your family from the East Coast.

  6. Stacy

    This earth lost another beautiful boy this morning to hateful and horrible Neuroblastoma. Thank heaven this child is finally out of the pain this cancer causes. His parents worked feverishly at home to keep him comfortable during his last week alive. What a fighter like Ronan. My heart prays Evan Thomason finds Ronan right away, so he can finally finish building his tremendous lego castle..

    From Evan’s blog:
    “Thursday, September 22, 2011 8:12 AM, CDT
    This morning,at 6:40 am, our warrior, Evan, flew into Jesus arms. He is free. “

  7. MK

    I really, really hope that you see my responses, Maya. I wonder sometimes because it’s in such a sea of other responses. I wish I had known about your blog before Ronan passed because reading your thoughts on the other side of his life…it’s truly one of the most eye opening events in my life particularly since you have managed to express and write every thought and emotion I have felt since my daughter was taken from me. Yes, taken. I don’t feel like I “gave” her back willingly. She was taken. Taken by a lazy ass, ego-inflated, medical group that was supposed to the premiere “specialists” for her condition. Fuckers. She still died. Would you believe that on her death certificate that his name isn’t even mentioned as the attending physician? It was some other doctor who was supposed to be on duty….as if his trail of destruction was erased behind him. I still cannot bear to see that man’s name and to think of how much press he has received as a “savior” makes me want to scream.
    I am so glad that you found Dr. Joanne. I met her a few months ago and had read her story prior to meeting her. I could barely get any words out. I was just trying not to completely loose it as we were in the middle of a lobby. It was the most overwhelming experience to meet someone who had suffered a similar loss and was able to pick up the pieces so she could help others. I haven’t ever felt like I was able to even to that for a second. I guess there’s a piece of me that hopes that if/when you read my replies that you feel better. Even if it’s for a few seconds, it would give me such peace. It would give me peace to know that another mama, whose soul has been tortured, who still feels like she killed her daughter, who still cannot think of her lost baby too long without crying her eyes out, felt better for just a moment knowing that she was not alone.

    BTW, the only movie that I've seen that somewhat portrays the pain of loosing a child is "The Lovely Bones" and "The Seventh Sign." I cried the whole time during both. Both losses occur under very different circumstances but the pain is definitely there.

  8. Glenda

    Maya,

    I continue to read your blog and think of you and Rockstar Ro daily!
    Stay strong mama bear… sending you big hugs xo
    Tell Liam I felt the same way when I was told at 7 I had to wear glasses.
    I’m sure he’ll rock them! 😀
    Peace and strength to you and your family

  9. http://www.drjoanne.blogspot.com

    Dear Ronan’s Mama,
    I want to offer something I wrote during the dark, hell days of 1994:

    “Sometimes, being ‘weak’ is the only way that I can ‘be’ at all.”

    The secret I wish I never had to learn, and that I wish you never had to face, and that I wish hundreds and thousands of grieving parents around the world never had to realize, is that just “being”- just existing in their physical absence- is a courageous act of love and honor. Being (what others perceive as, or we feel is) weak *is* being. And to exist in a world without our Beloved is, indeed, strength.

    It is a tragic privilege to walk with you…

  10. Desiree

    My heart & stomach hurt every time I read your posts…. Just wanted you to know we’re all still out here, thinking of you, feeling your pain (even though it’s not even an ounce of what you’re experiencing), sending you hugs and love from all over…. I wish all of this was enough to take away your pain and bring Ronan back… Take care.

  11. S.

    Yes, yes and YES!! Dr J., nailed it! That is the best description I have read about a being a bereaved parent! I, too, wish Hollywood would do an accurate depiction, so everyone would understand and know this pain lasts (what seems like) forever! Thank you SO much for sharing her words! Thank you SO much for sharing your thoughts and daily struggles! It always makes me feel “normal!” Haha!

  12. Pingback: Don’t Ask | My Blog

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