The ocean didn’t swallow me whole

 

 

 

Ro baby. One of our favorite movies is on. “The Fantastic Mr. Fox.” This is the first time I’ve watched it without you. Quinn is sitting next to me, eating a sandwich I just made for him. It is late but we are still awake. Daddy and Liam are asleep out in the other room. Quinn and I wish you were here with us watching our movie. You used to crack up at it, which in turn would make us crack up. There is none of that now. Watching this movie will never be the same again.

Did you see us today? I sat and wondered if you were watching us. I wondered if you would have been happy to see me smile. I smiled today while I watched your brothers play in the pool with their cousins. They laughed a lot and there was a lot of wrestling and horsing around. They looked so happy. As I watched them, I was overwhelmed with a mixture of happiness and sadness. It made me happy to see them so happy, but it also made me sad. How can they go on, how can the laughter continue without you? I know it is a beautiful thing and I know it doesn’t mean they miss or love you any less. But it still felt wrong to me. Will it always feel this way, Ro? I hope not. I hope someday I will learn to feel happy again and not have to sit and second guess it and not have to feel guilty about it. It still feels like I am betraying you.

I spent the day with your brothers. We enjoyed the sun. I went boogie boarding in the ocean. I ate a bit for you too. I tried to soak up the time with your brothers. I am watching them form a new kind of relationship now. They seem to fight less and love more. They seem to be aware of how lucky they are to have each other. They seem to be developing an understanding of how precious life is and how we have to make the most of everyday. They are being respectful and there is less sass and chaos. We are getting them back into a stable routine which they are thriving on. I know how important structure is, how important our family time together is to them. I know how much they have missed it. I’ve missed being able to give it to them too. I won’t say it feels good, because nothing feels good yet. But it gives me a purpose in life which I really need right now. Knowing that I have to work hard to help them get through this is something I feel so lucky to be able to do.

I went on my nightly run on the beach tonight. It hurt and I ran hard. I ran with a lot of anger tonight. Guess who I was angry at tonight? Everyday it is somebody or something different. Tonight, I directed my anger towards Dr. Kushner. I know, so not fair and so pointless. I know he is a good doctor, Ronan but I am pissed about the way he ended things with us. It wasn’t right and someday I am going to write him a letter and tell him all of this. I wrote it in my head tonight on my run, but I don’t have the energy to sit and have it out with him now. The way he sent us off, without even giving us a proper goodbye; I’m sorry it just doesn’t sit well with me. And why didn’t he look me in the eyes, Ronan. I don’t care how badly he felt; the fact of the matter is he wasn’t the one who had just been told in not so many words that there was nothing else that could be done for you. Nobody was hurting more in that room than me. He just sent us on our merry way and had his freaking assistant call us the next day to tell us he thought we should go to Chop. That will never be enough for me and it will never sit well with me. He owed you more; he said he would fight for you and not give up. He did give up and that is not right. Someday Ronan, I will fix this. I will make sure he never forgets you and I will give him another chance to make things right. I know he has this in him and although it may seem so pointless, it is not to me and I know it is not to you. I need closure in so many ways and this is one of them.

Did you see me after my run, Ro? It was such a long and dark run tonight. I still had so  much energy running through my body so guess what I did?? I went down to the beach, threw off my shoes, my hat, my shirt and ran into the black ocean. I swam in that deep, dark ocean until I could now longer breathe. I waited for it to swallow me up, but it didn’t. So, I swam out as far as I could and let the strength of the waves carry me back to shore. I did this for about a half an hour. The beach was empty, the ocean was mad, and I screamed and cussed at it until I physically could do no more. I told the world to fuck off for taking you away from me. I told the world that I was going to kick it’s ass. I told the world a lot of things tonight. After my swim, my mind calmed down a little bit. I think it was the physical exhaustion that kicked in and did it. I did it for you tonight, Ronan. I swam in that dark ocean because I am lucky enough to be alive and I am lucky enough to be able to do something like that. You will never have the chance. So tonight, when I jumped into that water, I took you with me. I wasn’t scared because we did it together. I wanted you to feel the coldness with me. I wanted you to be able to do it too. Everything I do in my life, it will be with you. I will always take you with me, Ronan. Just you and me, Ro. Just like you used to always tell me. You’ll be with me everywhere I go and with me in everything I do. I promise you that.

Alright my little monkey. That is all for tonight. I hope you are safe. I hope you always feel the love surrounding you. There is so much of it in the world for you. I miss you so much. Every second of every day. G’night my love.

Hello you lovely peeps. I hope you are all well. I just wanted to add a little something tonight before I drift off into my restless sleep. As much as I try to keep up on all the comments on here, I can’t. I try to do my best and I love what you all have to say. I checked them first thing this morning which I normally never do and something was written about how a certain person wished the lesson I would have learned through all of this is that there is no such thing as the perfect family. That there is no such thing as having it all. This remark has bothered me all day. Who is it who decides such a thing? To me, perfection can have a million different meanings. To me, I know what the perfect life was because I had it. To me, the perfect life was very simple. A roof over our heads, two parents who are madly in love with each other; who created a very safe and loving environment for our 3 heathy boys. I am living proof that the perfect life can and did exist until Ronan got sick. I now look around and I see all of my beautiful friends and I know they all know that they have the perfect life due to what we have just went though. I know they are all so thankful for the “imperfections” that they deal with on a day-to-day basis that mean nothing because they have a healthy family. My world would be shattered if I didn’t believe that a perfect life does still exist for some people. I have no doubt that my definition of perfection will now become different because Ronan is gone; but I still feel so very lucky. For going through such an awful thing, I look around and see perfection in my husband and my twins everyday because they are full of love and health. After looking up the definition of perfection, I still stand by what I say. It’s sad to me that somebody wishes the lesson I would have learned from all of this is that perfection does not exist. A better lesson for me to have learned through all of this would have been to open up my heart and embrace all the love that surrounds my family. To open up my mind to a world full of imperfection and to try to make a difference. To just be me, which is all I am trying to do to get through this thing called life. Perfection does exist and I had it for 4 blissful years. I will fight for the rest of my life to get pieces of it back here and there because that is what Ronan would want. He would want me to fight for the perfection that existed in our family. He would not give up on me and I have a slew of the most perfect friends who are here to help me achieve this. Perfection is real, perfection can have many different meanings. Perfection to me means not taking a thing for granted and living with the most love in your heart that you are capable of. It means stopping at nothing to get it until your heart is fulfilled in the way mine was when we had Ronan in our family.

I love you all; even the one’s on here who try to knock me down because lord only knows why. It’s not going to happen. I have a message to send and a job to do and if you’re not with me, or you just want to say hurtful things, then please stop reading this. I’ve done nothing except love and fight my hardest for a little boy who deserved so much more than what he was handed in life. If this offends you for some reason, I’m sorry. This is my life, my feelings, and my Ronan.

That is all for tonight. Love and blessings to you all.

xoxo

The oldest definition of “perfection”, fairly precise and distinguishing the shades of the concept, goes back to Aristotle. In Book Delta of the Metaphysics, he distinguishes three meanings of the term, or rather three shades of one meaning, but in any case three different concepts. That is perfect:

1. which is complete — which contains all the requisite parts;
2. which is so good that nothing of the kind could be better;
3. which has attained its purpose.[4]

In a New York minute

As Ronan slept last night, I found myself cuddled up on the single little bed that we have in the room with Woody. It is so tiny but I fit absolutely perfect in it snuggled up to Wood. At one point, he was rubbing my back while I was sitting up, looking at the floor. It was dark in our room and I just started to cry. He continued to rub my back and said something that I will never forget. He told me how sad he is that this is my life, that he only wanted to give me the best life ever. I wish I could say I came up with some uplifting words to say back to him, but I only nodded my head and continued to cry. We ended up whispering to each other about some things back and forth. I cuddled up on the little single bed with him for a while. He made me laugh by reminding me how when we were so young…and on our 30 day trip to Europe,while in London,the hotel we were staying at only had 2 twin beds. I had insisted on not sleeping in my own twin bed, but in his twin bed with him. It was cramped to say the least but all I wanted was to be as close to him as possible 24 hours a day. He said this was just like London and we both had a good laugh. Hardly London, but for a second I pretended like it was. Just the two of us, no worries, no cancer, no tears. Just us, blissfully happy, with not a care in the world. Seems like a lifetime ago. It’s nice to know after all of this, we can still go back there, even if it is only for a few minutes as our baby boys sleeps peacefully beside us in his hospital bed.

This morning I got a wonderful visit from a wonderful boy. Yes, I say boy, because he is only 26 and 26 feels so young to me, even though I am not too much older. I have talked about Ronan’s last roommate at Sloan on my blog before, Phoebe. The beautiful Phoebe, with the sparkling fighting spirit just like Ronan, and the bravest soul. During our stay at Sloan, while sharing a room with Phoebe, we became friendly with her cousin, Jonathan. He spent a lot of time with Phoebe having intense talks with her and teaching her all about life. Tricia, Macy and I all fell in love with the two of them. We have kept in touch and Jonathan stopped by this morning on his way to take the train to spend the week visiting Phoebe and her family at their home. It was so nice to see him and introduce Woody to him. He spent about an hour with us, and I got to hear all about the trip he just took to India,  before Ronan gave him the boot:) We had a good chuckle about that and Jonathon made Ronan laugh by telling him not to worry about it, that he was used to getting kicked out by ex-girlfriends, parents, etc;) He had Ronan is stitches even with how terrible he is feeling. It warmed my heart to see him and I sent him on his way telling him to give our love to Phoebe (who is doing wonderfully) and her mom, Ellen. I hope to see him again soon as he is now a friend for life. Tricia and Macy were both very sad that they were not here to see him too. That just means both of those girls have to come back here so we can orchestrate a reunion with Jonathan. Before we all do the NYC Marathon together once Ronan is well.

Woody went off and worked for most of the day. I sat and cuddled with Ronan and played Star Wars with him in his bed. We sang a lot of songs and I got him to get up a little bit so we could look out the window and shoot the snipers on the roof of the NYC buildings. He is still hurting and now is saying that everywhere hurts. I am doing my best not to panic and hoping it is just he hospital blues. We had a visit from the floor doctor today and his team as they were doing their rounds. It’s the first doctor here the I have met that I immediately didn’t like. He was condescending to say the least. As soon as he left, I gave Woody “the look” and he started cracking up laughing saying he knew I was going to bitch about him. I think my exact words were, ” I want to punch that guy in the face.” Woody agreed. The guy was a douche and I did not appreciate the way he was talking to Ronan, Woody or myself. He used some really stupid analogy on Woody when Woody asked if we could be discharged today. We both knew that the answer was going to be no, due to the pain control, but the way the doctor went about telling us no, was not necessary. We are not idiots and he could have said it a little more nicely instead of treating us like we were morons who came so far away from home. All the way from the Wild Wild West of Phoenix, AZ, where apparently, we have not evolved. I did also did not appreciate the way he made us feel like radiation and chemo was not going to do the trick for Ronan’s pain. We were told not to expect the pain to ease up until the end of the week. It is only Monday, you dick. Give some very scared parent’s a little ray of hope instead of going straight into what our options are if this doesn’t work. I don’t want any other options now, because this is going to work. I hope I never have to see that doctor again because I may just give him a swift kick in the balls.

Dr. Modak came by just as I was freaking out in my head over Ronan’s pain. He asked how he was doing, I said not well, and I told him we were very worried. He reassured me that everything was going to be o.k. and that the radiation was going to take some more time to kick in. I straight asked him if he feels like we can still get this under control. He told me without a doubt. Dr. Modak would not lie to us; my faith is in him completely. He said the combo of the chemo and radiation will work. We will take care of this little bump in the road and get Ronan back on track. I have no doubt about this.

After Woody returned to Sloan after a long day/evening working, I ran out to go back to the RMH to shower and gather up some new clothes. I was tempted to go on a run, but it was already 9:00 p.m. here and I wasn’t feeling up to being dangerous tonight. I had Marisa’s little voice in the back of my head chirping away about running in Central Park at night. I was way too tired anyway. Hopefully tomorrow I’ll sneak in a some time and get a run in. Lord knows I really need it even though my energy level is shot due to hospital life. It really takes a toll on me emotionally and physically, no matter how fun we try to make it.

Back at Sloan now and all is peaceful. Ronan is sleeping, Woody is on his computer, and our adorable roommates are listening to some show on their computer and laughing. The girl we are sharing a room with is a senior in high school and she has a girlfriend spending the night with her tonight. Her sister has been here every other night. They are adorable Jewish girls and I have a had a blast watching them celebrate Shaushan Purim all last week and it ended last night. They have been dressing up in costumes, laughing and talking all about their religion, beliefs, high school, etc…. It has been very sweet and uplifting. Never mind that one of the girls is very sick with cancer. Has not dampened their spirits at all. It is roommate heaven, as far as having to share a room goes.

It’s officially very late here… and I am a sleepy girl. Please continue to send Ro your strength and love…. please let his pain subside. And New York Miss Macy…. no more tears tonight my love. He is going to be fine. I love you.

G’nite all you beautiful people. Sweet dreams to  you all.

xoxo