Romama’s Busy Day

Ronan. I don’t have time to dig my hole this week, because due to a last minute invite…. I am so busy. And so tired. But in a very good way. I got an email from a lovie from T-Gen a few days ago. She wanted to tell me that Dr. Giselle Sholler was coming into town for a conference. She attached the info. I looked up the conference info and it said registration was closed. I emailed this lovie back and said, “Please, if there is anything you can do…. I’d love to attend this conference!” About an hour later I got an email back saying that I could indeed attend the conference and T-Gen would happily take care of my registration fees. So nice, Ro. I told your lovie, thank you so much! She replied back with, “Anything for Ro.” Thanks so much, T. You have no idea how much this means to me.

The conference is Monday-Wednesday and it’s all on Pediatric Cancer Genomics. Otherwise known as a foreign language to me, but I think I’m starting to understand parts of it. Just when you think you are starting to understand pieces of this childhood cancer thing….. you find out that you really have not a clue. I did not get home until 7 tonight and getting someone to help with your brothers was so last-minute as well. Thanks Sarah, so much. You saved me. I sat in a room full of so many amazing people. I felt honored to be among them. I saw your Dr. Eshun there. He is such a kind soul. He look surprised to see me. I gave him a smile and he tried to just shake my hand like he always does as he is so polite. I grabbed him for a big bear hug instead, like I always do. He asked how we were and wanted to know what I was doing at the conference. I just smiled and told him that if I was going to be an advocate for you, that I felt it was necessary to educate myself on what it is that I am advocating for; besides the obvious. I told him how I have been quietly watching Dr. Sholler from afar for a while and how I was interested in T-Gen as well. He said to me, “You probably know more about this stuff, then I do.” I just laughed and said I doubted it, but I was a fast learner. I told him I’d see him tomorrow. He smiled and said to have a good night.

Tomorrow the conference starts at 8 a.m. but I won’t get there until after I drop your brothers off at school. It goes on until 6:30 or so. It’s a long day but it’s a good long day to have. I love to learn and it comes easier to me when it is something I am very passionate about. You would be the passion behind this, of course baby doll. I was sitting in between 2 men all day. The one to the right kept falling asleep and snoring. I almost elbowed him and said, “Seriously dude?! My son died from cancer, can’t you at least act like your interested in being here?” I kept trying to read his name tag to see where he was from. It said his name and that he was from COG. I tried to give him the befit of the doubt, like maybe he had bad jet lag or was sick. If that were the case he should have just went back up to his hotel room because he slept though pretty much everything. The guy on the other side of the guy I was sitting next to looked nice. I caught a glimpse of his name tag. He was there for the Team Finn Foundation. I grabbed my phone and googled him right away. I don’t waste any time. I read about his son, Finn who died from Rhabdomyosarcoma. I grabbed Finn’s dad on the arm and held it there. I said, “I Googled you. I’m sorry about Finn.” His eyes started to tear up. “I lost my son, Ronan, almost 9 months ago to Neuroblastoma.” I don’t remember what we said next. I think Finn’s dad asked me, why I was here, besides Ronan. I said that was the only reason I needed to be here, was for Ronan. He is my teacher now and he knows I need to learn everything I can on this so we can hopefully help them if we believe in what it is they are doing. If I am going to support T-Gen, I need to do my homework. This is not a test I can flunk. This is not a test you can do over. I am here to learn what they are going to do with pediatric oncology that it will impact this disease in a big way. I am here to meet Dr. Sholler, so I can at least tell her thank you for being so kind to us as she was going to take Ronan on one of her trials in San Diego, but then your little liver starting failing baby…. and there was nothing else we could do. We were trying to get a plane to take us out there and everything. But you were dying even though we still had hope. So much hope. You organs, just started shutting down, one by one. I’ll never get the mental image of your skinny little body out of my head. It will haunt me for the rest of my life. I think about so much, all the horrible treatments you were put through. So much chemo, pokies, oral meds, sedations, surgeries, radiation….. none of it worked because if it did, you would not be dead. Your daddy asked me the other day, what I thought would have happened, had we done nothing? I can’t answer that question yet. Did the chemo kill you faster than just letting you be???

I remembering after you died that I was in such shock. I was sitting with your Mr. Sparkly Eyes and I just said to him, “How did he die? I mean, what happened?” I don’t  medically understand how he could just die.” Sparkly sat and explained it to me in a way that I could understand. Basically all of your organs started failing, then stopped working. Your heart just stopped beating. I thought why couldn’t we just get him new organs and a new heart? Somebody had to have those just lying around, right? How could his heart just stopped beating? That’s impossible! He loves me too much! I still think this way. Sometimes my heart feels so full of love like it did tonight when I met Finn’s Dad, that I swear it doubles in size. I think your heart lives inside of me, Ronan. I think that’s why when I feel really strongly about something or someone, the love I have for them gets twice as big. That’s all because of you. Our love is so strong. It is so amazing. It is going to change the world. I may have broken my promise to you about saving you…. but I’m not breaking this one, Ro. Our LOVE WILL CHANGE THE WORLD. Just watch baby. Just watch.

I’m going now. My brain will not shut up on genocodes/genomics/phenotypes/functional genomes/translational genomics//////// intense stuff///////// worth the raging headache and red eyes. Ready for tomorrow. Not really. But I need to get some sleep for tomorrow. I’ve been sleeping in your bed. It makes me feel close to you.

I love you my spicy monkey boy. I miss you so much. I hope you are safe. Sweet dreams, baby doll. G’nite.

Hell is empty and all the Devils are here

Ronan. Cancer is stupid. And people are stupid. I try to ignore the stupid people of the world the best I can but sometimes they get under my skin. I try not to let them but as it turns out, I’m still human. For as dead as I feel I guess I’m really not because I am still able to feel. I wish I really were a dead zombie. Then I wouldn’t be bothered by these stupid, ignorant people. I would just rip their hearts out and eat them and then maybe they would be able to feel a quarter of the pain that I feel on a daily basis. Only in Zombieland, right buddy. Sometimes the stupid people of the world say stupid things like, “You know, there are other mothers out their who have lost children. You’re not the only one.” My reply is, “Really? No shit, asshole.” Please hold on a minute while I punch you in the throat. It is as if they are trying to compare my pain, to somebody else’s. Or justify it by saying there is someone else out there, who has it worse. I am not ignorant. I am aware of the other people out there who have lost their children. But guess what? They didn’t have a Ronan. So there is no comparing or justifying. You were mine and therefore, nobody else knows what this is like. I don’t care if they too, have lost a child. This pain is my own, this sadness is my own, this experience is my own. I would never tell another parent, “Oh, I know exactly how you feel.” Because I don’t. I understand some aspects of it. I can relate but to each his own. I am learning to be respectful of that for others going through this process. I’m still new at this game but this is something that I have learned. Unless you had a Ronan, you don’t fully know.

I survived Christmas? I survived Christmas. It was brutal. I took some time in the morning, before I got up and just cried for you. After that, I was able to go downstairs to watch your brothers open gifts and enjoy Christmas the way 8 year olds should. It was as nice as it could possibly be. All that mattered is I was able to get out of bed and watch as your brothers smiled, giggled, and laughed. I lasted a couple of hours but then the pain became too much and I had to retreat up to my old bedroom where you and I spent all last summer cuddling and whispering secrets to each other. I passed out for a few hours. I dreamed of you. This is the second time in a month that I have seen you in my dreams. They are never pleasant and it is always the same theme. You looking at me. I’m trying to save you, but I can’t. I know you are dying, but you always look peaceful. Thanks for that, little man. My heart was extra heavy on Christmas for another mama. Another mama who wrote to me a few days before Christmas to tell me thank you. I was sick to my stomach after her email. I don’t want a thank you from another mama because her baby girl died of Neuroblastoma. She died on December 7th, this year. This mama told me it was because of what I had written about you after you passed away, that she was able to tell her Charlotte all the things she wanted to say, right before she died. I don’t remember what I wrote about you and I don’t want to know. I guess I am glad it helped somebody else although I wish I didn’t have to. I wish I could give her Charlotte back. I told her I was sorry. I wish I had some wise words for her. I didn’t. Sorry was the best I could do. She told me how she just wants to be with Charlotte. I told her I knew. Oh, how I know.

Yesterday, I spent the day in Portland with your daddy. You know how Portland is one of my favorite cities. It was a nice day. We grabbed lunch. I ate a bit of soup but that was all I could manage to keep down. We talked. But not about normal things anymore. Our talk revolved around everything cancer. I played the game that I am so good at playing now which is we didn’t choose the right treatment. If we did, Ronan would still be here. Should we have done this? Should we have done that? We picked the wrong treatment for him. He insists that we did not. He insists the outcome would have been the same, no matter what. I still don’t believe him. But I guess I have little credibility due to being the irrational broken-hearted mama. I don’t need credibility though. I just need someone to figure out this fucking disease. I need the doctors to get a clue as to what it is they are doing so little kids don’t have to sit around playing russian roulette. I’m not stopping until this changes Ro. I promised you that. After the talk about you we moved on to other fun things like Coach Bemis. The coach in AZ who has Stage IV lung cancer and he is NOT a smoker. We moved on to Katie who is the beautiful 15-year-old girl with Rhabdomyosarcoma. We talked about Charlotte, Will, Dr. Sholler, Dr. Mosse, etc….. We will never be the normal couple again who goes to lunch and talks about the weather. We both agreed that this world is fucked. But we left there, holding hands and we’re not letting go. We know what we have to do.

We walked the streets of 23rd for a while. We passed a boy playing his guitar. He was really good. He had his guitar case open so people could throw money in it. He looked to be around 15. He had a sign sitting in his guitar case. It wasn’t the normal sign that read something like, “Help me, I’m hungry.” It simply said, “Help Fight Boredom.” I smiled and laughed as we passed this boy. I looked at your daddy. I had your daddy give me a couple of bucks and I turned around and walked back to this boy. I threw it into his case as well as your little card and your “All good things are wild and free,” bracelet. He said thanks and continued to play. I caught back up to your daddy and we started to walk. I noticed the boys’ guitar playing had stopped. I turned around to watch him read your bracelet. I watched from a far as he read it. He looked up and waved to me, the girl in the yellow coat. I waved back. That boy made me happy today. He reminded me of you. I hope he never gets cured of his boredom. I hope he remains curious to the world and follows his dreams. I hope he has a mom and a dad who know how lucky they are, to have him. I hope he is safe. I hope he is o.k. I hope he is wild and free. This is what I hoped today, Ronan. It felt nice.

Dear lovely little blog reader: I will address your questions but only because you have pissed me off and I am feeling extra spicy today. Here goes dolly.

Why is it ok to take Ambien, but not an anti-depressant? I think you are being slightly hypocritical. You need something to get out of the abyss you are in – other than your youngest son, which, while totally un-fucking fair, will not happen. The fact that you didn’t care if your older sons’ had winter coats speaks volumes. Christmas Eve and you hadn’t bought your twins any presents??? You need some help. You think you might need to check into a hospital…what do you think they are going to do there? I’ll tell you, they will load you up with anti-depressants. They will monitor your food intake and your vomiting. You will lose the control you so relish. The choices will be taken away from you.

You need to talk to a physician. Your constant vomiting is obviously not healthy – don’t your other sons deserve the same mom that lovingly helped her youngest son? While I’m not suggesting you are bulemic, have you ever read what constant vomiting does to your body, your throat, your teeth? Or is this part of your “danger” crusade?

No, I have never lost a child, so I’m sure that will make you totally disregard my opinion, but do you ever re-read your posts? You are on the edge and if you don’t get some perspective, you are going to fall off. Where will that leave your already devastated family?

It is NOT o.k. to take Ambien. For me anyway. I think this drug is the devil. Obviously you are a new reader and have not read all of my posts, therefore you are the one being hypocritical. I talk about this all this time. I hate myself for the fact that I sometimes have to take this drug in order to sleep. Not all the time, but it is during the times that I am struggling the most, when I know the lack of sleep is going to make the crack, so I give in and just take it to get some fucking sleep. It makes me feel mentally weak. It makes me feel like a loser. It makes me feel a lot of things that I hate but sometimes I need a break from the pain and sleep for a solid 6 hours seems to help. This is not always the case and I am proud of the nights that I don’t have to take anything at all. I try every night, not to take that drug but as I said before, sometimes I need a break.

Why is everyone so bothered by me not getting on the antidepressant band wagon? SHUT THE FUCK UP!!! If it helps other people, great! But it’s not for me. I did the anti depressant thing for about 6 months and it only made things worse. I have tried it, and I didn’t like it. END OF STORY. The abyss I am in is called my son just died 7 months ago. I am so sorry you are so bothered by this inconvenience. I am so sorry that you are so bothered by the fact that I didn’t care about my twins’ winter fucking coats and Christmas presents this year. Lady, are you high?!?! Are you on crack? Are you even a parent? Probably not. If you are, I am scared for you. The fact that you think the above things above are a big deal, in the grand scheme of things, disturbs me. I’m a good mom. I know this. I will never second guess this and anybody that truly knows me, wouldn’t either. Even if I didn’t go out and buy winter coats or Christmas presents this year. I think I deserve a fucking hall pass for this first Christmas, don’t you? I don’t care if you do or not. I’m taking it.

And no. I do not re read my posts. For obvious reasons. Maybe you should go back to the beginning and read them all though, before you judge and spew your words of concern. I’m going to go now. I’m off to go skydiving while I throw up my breakfast to continue my “danger crusade.” Opps. I didn’t eat breakfast today which must mean I’m anorexic. Clearly. I am aware what this constant vomiting does to my body. I’m not proud of this but it’s not something I can control right now. I guess having a dead son will do that to you. I hope the hospital that I am going to check myself into, can bring him back so it will stop. Have a lovely day, thanks for your concern but I think you need to go back and reread what you wrote and try a little harder to put yourself in my shoes. This is not a dog we are talking about, dying. It is a child. It was my son. It is not something a fucking pill can make better. Or a hospital. G’day lovely little blog reader.

Ro baby. I love you. To the moon and back. I miss you. I hope you are safe. I hope you are wild and free.

xoxo