You and Ben. Ben and You.

Ronan. I have had so much go on the past couple of days but all I can think about is Ben died today. Those are the words that jolted me out of my Ambien induced coma last night at 12:11 a.m. I was asleep, in Quinn’s bed and you know once I take my Ambien, World War II could be going on in our house and I wouldn’t know it. Last night, I was ripped from my sleep and straight up in my bed, not knowing why. I reached for my phone because something just felt not right. That’s when I read the words, “Ben died today.” My stomach dropped. I immediately sent your Mr. Sparkly Eyes a text that simply said, Ben died. Fuck. Fuc (which is our code word for Fuck You Cancer) I got up, I kind of remember going into our bedroom and just saying out loud to your Daddy, “Ben died. FUCK!” I don’t remember what happened next except my face was very wet. I woke up in the morning, back in Quinn’s bed praying that I had only dreamed of Ben dying. I grabbed my phone and read the words, once again. No. No. No. No. Not Ben. I got up, showered, got your brothers up as we were running late. I was in the middle of making lunches. Your brothers came out to grab some breakfast. Your Quinny was complaining about the shorts your daddy had picked out for him to wear to school. They were just normal, corduroy shorts and I told him how handsome he looked. He started to say how he didn’t want to wear them, how it wasn’t fair. I stopped in the middle of making his sandwich, looked at him and I said, “Ben died. Ben died and you are going to complain about the shorts you are wearing? You are not allowed to do that.” Was this too harsh for an 8-year-old? I don’t fucking think so. It’s real life. It’s real life where I’m sorry but we don’t get to complain about things that don’t fucking matter anymore. There are bigger problems in life. I refuse to let your brothers, forget that. I refuse to let them grow up in a world where they are ungrateful that they are alive and get to wear stupid shorts that look nice when all they want to do is wear Nike Basketball shorts. It’s not happening when you and Ben would have given anything to wear nice corduroy shorts.

So Ro. I knew that day I saw Ben at America’s Taco Shop that it was really you that I was seeing. It was not just a coincidence. It was a very well orchestrated plan thought out by you. I knew that day, that Ben probably was not going to be around much longer. I knew that this was your way of telling me this, but it was also your way of telling me that you were going to take care of him. I knew this then, but I know this now for a fact. I have not told his mama this. I talked to her today. I wanted to tell her this, but I could not find the words. I was the one, crying on the end of the phone while I listened to her tell me that she was fine. How she was cleaning the house, but she was fine. What do you say to that? I did the only thing I know how to do. I simply said, “Barb. You are not fine. You are in shock. You are having a physical reaction to Ben being gone and your mind and your body are trying to protect you.” She said she wasn’t sure, that she really felt fine. The tears slid down my cheeks. “O.k.,” I said. “Please just know that I am here when the shock wears off. I’m much further down this road, so I kind of get it. Not entirely, but kind of.” All I wanted to do was reach through the phone and wrap my arms around her. All I wanted to do was to bring Ben back so she wouldn’t have to be fine. I felt so useless and so helpless. I tried to think back to what happened right after I lost you. I don’t remember much but I think I wrote to you. I’m sure there were so many people out there going, “Has she LOST her mind?!! Who writes a blog post, not even 24 hours after their child dies?!!!” I guess that was my version of being fine. Everybody deals with things differently. There is no right answer. You know what else, makes me love Ben’s mom even more? The fact that when she did do her update (I’m assuming it was her) that she simply titled it, “Ben died yesterday.” That was very Maya like if I do say so myself. Regardless if they are religious or not, it was so fucking refreshing not to read, “HALLELUJAH! Ben is with our Lord Jesus Christ! We are so happy!” The next caring bridge that I have to read, that says something like that, I’m going to punch my fucking computer screen. I don’t care how much you believe in God…. stop fucking lying. No parent is happy and rejoicing that their child is dead. Let’s call a spade and fucking spade. I don’t care if God is your fucking BFF. The fact of the matter is your child is gone and let’s just be honest for .2 seconds and be honest about it like Ben’s mom. Ben died. That says enough. That says everything and more. It is enough. Just let it be enough and nobody needs to scream Hallelujah about it.

I know I worry about you being safe, Ronan. But I don’t worry about Ben, because I know he is with you. Does that make sense? I may not know that you are safe, but I know you are now watching after your little buddy and I know that you two are together and so I know you have a little friend to pal around with. I pictured you two, today playing with each other and running all around. I actually pictured you both on this earth and how you would have been great friends. You don’t get to be here together so you being somewhere else, will have to do. It was easy for me to picture the two of you, together which is weird because we didn’t even know Ben that well. We only had a few interactions with him but they were always one’s that I could not forget. I never could get his little mischievous smile, out of my mind. It was so much like yours.

Words failed me today with Ben’s mom. There are no words that could ever be good enough. I’m so sorry was all I could really do. If I had to tell her some things, it would be this.

This should not have happened. It should not have and you don’t ever have to be o.k. with this. You won’t ever, “get better,” or get over this. And you should not. He was your Ben. Your one and only sweet Ben and this just proves that life is not fucking fair. Nobody will ever have a Ben like yours. This is o.k. You are the only one that was special enough to have him. People will try to understand but they won’t. This is o.k. too. He is your best kept little secret. Your love is your best kept little secret. The best kept little secret that nobody can take away from you because it lives closest to your heart and your heart, ONLY. Nobody else’s. Ben knows how much you loved him. Ben knows you would have traded your life for his in an instant but it was not your choice. You will learn to accept this and let his love, guide you for the rest of your life. Don’t question your heart. Ever. With anything you do anymore. Even if that just means deciding what to cook for dinner. Everything will eventually mean so much more than it did before because Ben will be behind everything you do. Not that he wasn’t already before, but now his light will become that much stronger even on your darkest of days when you don’t want to get out of bed. Don’t fight this. Stay in bed and have lots of dark days. He is worth every single tear. He is worth your shattered, broken heart. He will help you put it back together when it is time. There is no time frame for this. Don’t listen when you hear this gets easier as time goes on. Time is irrelevant. Time means nothing. Time has stopped. You were his teacher for an amount of time, that was cut way too short. Let him be your teacher now. I know he has so much he wants to teach you. I know he has so much he is going to teach you. He will keep you safe. I promise. I’m so sorry. I’m so sorry and I wish I could bring him back. I can’t so Ro will watch over him. I don’t believe in much these days, but I believe in this. I don’t just believe in this, I know this. I love you. I love Ben. I love the love you two have for one another. Not had. HAVE. You will always have that. Always.

Alright Ro baby. It’s been a long day full of too many tears and homemade potato latkes. I peeled the fuck out of the potatoes today while I cried for you, me, our family, Ben, and Ben’s family. I made some pretty kick ass potato latkes. You would have loved them. I’m sorry that cancer is an asshole, therefore you couldn’t be here to eat them. I’m sorry. I’m sad. I love you and I hope you are safe. Thanks for taking good care of Ben. I love you both to the moon and back. Sweet dreams, baby doll.


25 thoughts on “You and Ben. Ben and You.”

  1. It’s not fair!! It’s not fucking fair! I hate cancer. Fuck you! I’ve cancer, too. ALL. I hate this Cancermosterfuckingthing so much. Ro and Ben will be the friends ever, I know. I’m so sorry. I’m sorry.

  2. Thank you, Maya. I never have sufficient words to engage your words, but, I’ve felt alienated by the messages of rejoicing over a child’s death. I get that we each have out own stories to tell ourselves, to make sense of the senseless, the wrongness of life’s only certainty coming way before its time. No parent, no family, should ever have to endure such pain and insane heartbreak. It makes life so cruel. I guess that’s why they do it. I respect people’s beliefs, but still can’t wrap my head around the uber-Christian (in particular) way of grieving. I’ve felt like I’m on the outside, like every kid subjected to this torturous disease is super-religious, and am I messed up that I’m not? Is my way of seeing things insufficient? No, we are who we are and that’s the way it should be. I just can’t believe in a god that takes kids so violently fir his plan/glory or whatever. Sounds too fucked up. My god loves and the energies of our lived ones persist. That’s my story. No matter what, I’m sending love your way.

  3. I saw that poor little Ben had died yesterday. I made a donation in his name but it just didn’t feel like enough. I think I’ll have to pay it forward in some other way today in Ben and Ronan’s honor. It’s just never enough.

    I guess when it comes to people proclaiming that there child is with Jesus or HALLELUJAH! he is with our Lord Jesus Christ, etc., I just always remember exactly what you said in this post, “Everybody deals with things differently. There is no right answer.” You are exactly right, there is no right way to think or feel. I think I’m just thankful for those people who’s babies are gone (like your sweet Ronan) have found some comfort. Even if it is fleating and even if I don’t happen to agree with them. I think everyone is just getting by the best they can ya know.

    Thinking of you often. Fuck Cancer!

  4. I usually refrain from commenting because you are right, our situation is not yours, and everyone’s is unique. And sadly, the ten families we’ve gotten to know well and follow their stories, which ended as gravely as yours, have all handled it differently.

    But, the one thing that is a constant thread for the siblings (and even for Wil) is the burden and guilt of being alive. We spent a lot of time and energy talking about how special Wil was for being alive and that he would do great things with his life. We pushed him along to make visits and do charitable works. Was this too much for him as a six and eight year old? an 11 year old? a thirteen year old? Apparently it was.

    In a counseling session with him (and we’ve heard from others) he said he didn’t know what he was supposed to be or do special and that he had been harboring and living with a lot of guilt that we were unaware of. The amazing counselor was a genius! She released him from all of it with a simple sentence. “You’re just supposed to be a regular teenaged boy.” That’s it. Simple. She went on to say that he has a whole life to go on do something “special” if HE CHOOSES.

    Bottom line Maya…your boys didn’t ask for this. They are children, wiser beyond their years because of the circumstance that life dealt. But they need to be able to grow up as carefree and fortunate as they deserve. They shouldn’t wake up to the news of Ben dying and then have to live with that today in their heads at school. There is no way to know what is floating around in those brains, possibly thoughts of why it wasn’t me who got cancer and died.

    As adults we are able to choose our path and make the decisions we want to that affect our lives. If you continue the path of being a torch bearer for neuroblastoma, good for you. But realize, that is for you. Not your children. They didn’t choose it and they should just get to be little boys. Family members, friends, your husband…they all choose the response and path that is right for them. That is the beauty of free will. And their choices won’t always be yours or what you think they should be.

    Condolences to Ben’s family.

    1. Paul–I am so very sorry for your loss. How kind of you to share your Wil’s pain/guilt in an effort to help Liam and Quinn avoid any added ounce of it if possible. Wishing you and your family peace, love, and light…

    2. I totally agree Paul. No one- especially a child should have received an announcement in that manner.
      It makes it appear (in my humble opinion) that to a child, only those who have died are special and I must always gage my reactions and life based on those who died……….

      As a parent it is our responsibility to guide our children and make them feel safe. Children don’t understand death or why one gets sick and lives and one gets sick and dies. It could be the flu or a headache…..a child doesn’t understand the difference between any of those and cancer. They deserve security and peace of mind for as much as they understand. Not at 8 years old be humiliated because they were only thinking of themself. Childhood is over so fast. Let them live a carefree and wild and free childhood. Teach them yes, but with an age appropriate lesson and conversation. Howare these innocent surviving children live up to the death of a sibling…..they shouldn’t “have to”. They must make their own way to be who they are and create their own memory of the brother, sister they lost.

      My condolences to you Paul and for getting your son Wil help and listening to him.
      My condolences to Ben’s family.

  5. I was so heartbroken when I read that about Ben yesterday morning. It just makes me sick how many kids are dieing from the fucking disease!! There has to be a cure and I know that you, Maya, are the one that will help lead that charge to finding that cure….it can and will be done!!

  6. i’m sorry Ben died. I’m sorry you’re sad Maya. I wish I could hug you. I love the words you shared, what you would say to Ben’s mom, spot on! love to you today, hope you have something make you smile today, xoxo

  7. I’m so sorry for the loss of another precious baby. I’m with you, Maya…there is nothing worse someone can say about losing a loved one than “he’s with the Lord now.” That does not help. I so admire your honesty, your courage and your light. You are amazing.

    1. that wasn’t necessary. We do not all believe in a god. If you don’t like the comments of the blog re: no god, don’t read it. Did u realize that god is DOG spelled backwards? The more people I meet and hear from the more I love my dogs.

    2. This comment is so rude and unnessesary!! It’s so easy for ppl such as your self to write this crap! I wonder if that would be the case if you lost a child? I follow a family who lives in my neighbor who has a daughter battling this fuckityfucked up fuckwad called cancer and it makes me sick when I read some of their blogs because EVERYTHING thing is praise GOD, and GOD is good, and they have
      Comfort knowing her illness is in GODS hands because GOD will walk them thru it! I would never post on their blog what I truely feel, like if GOD is such love then why allow these innocent children and families to go thru such pain and suffering? Why put them in these shitty situations in the first place!! You know why I would NEVER post that? Because its plain fucking RUDE!!! Everyone IS entitled to their own opinion and belief. But, if for them it’s comforting to believe in GOD in such a way great. But, if Maya doesn’t, then to post such bullshit is complete disrespect! You want to pray circles around her family great, but keep it to your self when CLEARLY you know this HEARTBROKEN mama does not want to hear it and in fact it pisses her off!!!

  8. Dearest Maya — I’m going to try to articulate what I mean the best way I can.. Hopefully it makes sense .. ? You said that you worried whether Ronan was safe, but that you weren’t worried about Ben because you knew Ben was with Ronan. I believe that when Ronan passed away, somebody else’s son or daughter was there for Ro too. I don’t believe that any child is alone or lost after they pass away.. I believe that they are together, and they help each other send signs to their families to say that they are okay. The other day, they helped Ronan send you a hummingbird.. and when the time is right, they’ll help Ben send his mom a sign too. I believe the older children watch the younger ones.. and I belive that moms and dads watch over all of them until the families can be together again.

  9. The words from this Momma who lost her beyond warrior son a little over 15 months ago hit me as so powerful today. I thought I would share this with you as I wondered if it would have any meaning. Of course it may have none. She has begun to take a gardening class as it was something she and her son were passionate about together.

    “Much of what is true about trees, shrubs and bushes is also true about people – I came to that conclusion during yesterday’s lecture. I could go on and on but I have limited time to indulge in pondering and writing today. The one fact that struck me the most I want to share with everyone….. If only I had air-time. I’ll settle for facebook and caringbridge to help me shout it from the highest mountain today.

    After trimming, pruning, cutting, wounding a tree or bush it NEVER HEALS really. Our instructor made a very definite point to teach this. PLANTS like woody ornamentals DO NOT HEAL from trauma – they compartmentalize over the wound. Plants seal off (compartmentalize) the wound area in an attempt to prevent the whole plant from succumbing to the damage.

    WOW !

    Epiphany moment.


    We will NEVER, NEVER, NEVER heal and be ‘all back to normal’ ever again. Ryan’s life was too important, too central to our growth and survival for us to simply ‘heal’ and go on.

    Instead we COMPARTMENTALIZE the wound. IT IS ALWAYS THERE – in the same spot, same intensity, same breath-taking permanence (if we stop and think too much about The Loss and not the wonder of Ryan’s Life). We can never heal this wound so the BEST we can do is seal it in a way (safely so that even the seal does not break us) – seal the wound properly in an attempt to allow us to continue productive Life.

    We cannot minimize this wound’s impact or turn back Time to when Ryan was with us.

    What we can do is deal with The Loss in a way that promotes continued growth, reinforce our structure,’compartmentalize the damage’ to promote our survival.

    Healing is different.

    Healing from a boo boo oft times does not leave even a scar or change the way in which one lives, depending on the size and scope of the boo boo that’s been healed.

    We get over a cold and never give that cold another thought – that is ‘healing’ in my book.

    NO, we are like trees. We NEVER heal. We will compartmentalize our wound – seal off the gaping hole – so that we will always remember but we can continue to grow and thrive – incorporating The Loss into our very structure and growing AROUND and With the wound safely tucked into our being. A tree never forgets – neither do we.

  10. Shit. I’m so sad to hear about Ben :(. It’s all just so effed up. I’m so sorry. Thinking of you and Ben and your families. Sending you thoughts of love.

  11. Thinking of you, RoBaby, Ben and Ben’s mama. I will pay it forward Maya in honor of Ronan and Ben. In the name of two gorgeous little boys, one with the most beautiful blue eyes I have ever seen and the other with the most beautiful red hair I have ever seen. ❤ I hope Cancer gets fucked soon. Seriously.

  12. Way sorry about Ben dying, f u cancer. What I do see is momma Mya has traveled forward in the journey of grief so as to have words of comfort/advice for Bens Momma. That is progress in your new world without Ro. Baby steps girl.
    Looking forward to see the foundation plans for research grants etc. try to sleep.

  13. other posted info I recently read:

    Helping Surviving Children Cope with a Sibling’s Death

    Often when a child’s sister or brother dies, the child actually feels that he has lost three people: the sibling and both parents. For the parents, the death of a child is so devastating that they have very little left to give to their surviving children. However, these children have important needs to be met and fears to be addressed, and if they don’t get the help they need, there can be long term emotional damage. A surviving child is trying to cope with the loss of his brother or sister AND to the change in his family situation along with the behavior of his grieving parents. The child needs to be reassured that even though his parents are grieving profoundly over the death of their other child, it does not in any way diminish the love they feel for the surviving sibling. When a child loses a sibling, he loses a playmate, a friend and sometimes even a “surrogate parent.” Below are some feelings and thoughts that a child may naturally have:

    “Will my other siblings or my parents die?”
    “Did I do something that made my brother/sister die?”
    “Things will never be the same again.”
    “I can’t let my parents see me cry, because it will upset them.”
    “No one cares about my feelings, only my parents’ feelings.”
    “I feel left out.”
    “If I act like my brother/sister, maybe my parents won’t be so sad.”
    How to help:

    Reassure the child that he is not going to also die, and that he is loved and wanted.
    The child’s parents should try to keep the family’s routine as normal as possible.
    Expressions of grief should be shared. Encourage the child to share his feelings and talk openly; let the child know that he shouldn’t be afraid to talk about the sibling who died.
    Give the child plenty of comfort in the way of hugs and holding.
    Reassure the child that he is not responsible for the death.
    Keep in mind that surviving children cannot be expected to “take the place” of the deceased sibling.
    Try to answer all the child’s questions about the death as honestly as possible, but don’t feel obliged to have all the answers.

  14. I am so very sorry about Ben – and I wish I could write something that could help more. I too believe that Ronan and Ben are playing in a cosmic playground – I believe that is where my sons are as well. I hope that they are all safe and having fun until we can be with them again.

    Sending peace, hugs, good thoughts and a gigantic Fuck you Cancer!!

  15. Maya, noone–or at least I know I am not here to judge you or any parenting decision you are making with your precious babies. The decisions you must make every minute of every day are ones I personally know nothing about and parenting is hard enough without death lurking at every corner and missing the perfect piece to your family’s unique and amazing puzzle. Absolutely children should not have to face that the only guarantee in life is this very moment…and yet yours do, whether or not they left the house that morning with the knowledge that Ben died–they obviously know that Ronan di–it is a constant smack in their face, hole in their heart, and wound to their soul. I did truly appreciate Paul’s point as he appears to be part of that shitty club that noone wants any part of and as everyone’s journey through life being part of the fucked up club is unique and their own, some themes and experiences have to have some similarities here and there. I was comforted to know that Quinn would worry about something as silly as shorts–to me it means you are doing something right and he is having some typical worries/complaints. Also I wonder if some of the little things and while clearly unimportant things in life become a bigger deal to your babies…as they are well aware that these are probably the only things that they have an ounce of control over. Not if and when they are beyond sad and missing their baby brother–or when Mommy or Daddy are going to be doing the same. Sending you love and support forever and always.

  16. Words did not fail you. As I read what you said to Ben’s mom, I think you said the perfect thing to her. You gently stated your opinion based on your very personal experience was really going on with her – you did not waste time and energy arguing with her – and then you said the best thing you possibly could have. You said you were a little further along this road and that you were there for her when she needed somebody to talk to when the shock wears off. How much more perfect could it be that that?
    Most importantly, you knew not to force it and risk saying the wrong thing because you have heard the wrong thing so often. You know to avoid those mine fields and when in doubt say next to nothing and offer support. Perfect.

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