Every teardrop is a waterfall

Ronan. Ouch. As I sit here and write, my fingers are aching with pain. The kind of pain that shoots all the way down to the tips of my fingers. This only happens to me when I am crying really hard. Like I’ve been doing all day long. I cannot stop. Guess what else I did? I got on a plane to fly back to Phoenix. Alone. As I was walking through the San Diego airport, it hit me that this is my first flight without you since you were diagnosed. We flew everywhere with you to try to get you better. Today, I stepped on that plane all alone without you to take care of anymore. There were no looks of pity from the other passengers because of your little bald head. If anything, people were full of smiles, someone complemented my tan, someone else told me I had pretty eyes and they liked my shoes. All the while in my head I was thinking, “What the fuck is going on?? Don’t you people know my son just died?” I sat on the airplane in the aisle with nobody beside me. Across from me sat a boy. A very cute boy who reminded me so much of you. He had tan skin, light eyes, and gorgeous hair. I thought to myself, I’ll bet Ronan would look similar to this boy if he would have grown up to be his age. The boy was holding a book about running. He also had some rubber bracelets on his wrist that he was wearing. I was content just to sit by myself with my thoughts of you, but then I noticed this boy kept looking down at my foot. He looked over at me and asked what my tattoo said. I smiled and told him that it said “this too shall pass.” He asked what it was for. I smiled again and told him that I had gotten it for my almost 4-year-old son, while he was sick with cancer. The boy didn’t know what to say after that except that he was sorry. I told him it was o.k. I took off my F U Cancer bracelet and gave it to him. He read it and smiled and put it on. I asked him about his running book. He then asked if I wanted to come over and sit with him. I said sure, why not. I sat with this boy and we talked about his running for a bit, but he really wanted to know all about you. For all the crying I did today, I sat with this boy, whose name is Bryson, and we talked about you for the entire flight. I told him about this blog that I write for you and how I had over a million hits on it. He was shocked to say the least and seemed confused as to how many people could know about you and your story. I told him it was because you are such an amazing soul and have so many things to teach to people in life. Turns out, Bryson is 17 and lives in Utah where he is the oldest of 6 kids. He has a little brother who is 4. Bless his mama.

As we were landing, Bryson told me that he wished that I were flying to Utah with him because he loved talking to me. I told him he was sweet and handed him a card with your blog info on it and told him to keep up his running. Shortly after that , I got a message from Bryson saying he looked up your blog and told me how touched he was by our love. He told me that even though he is only 17, he knows I’ll see you again and he could really feel our love and your spirit today. He thanked me for telling him about you and said I have changed his life and have inspired him. I sent him a message back and told him to think of you every time he runs and that you will push him to do great things in his life. I’m not sure why I met this Bryson boy today, but I feel like there was a reason. I feel like you were behind this. It was too random of an instant connection for there not to be a reason. Even if that reason for meeting him was only because of the few minutes I sat and looked at Bryson, before I knew anything about him, and I smiled to myself and felt happy because he reminded me of you in the way he looked. If this is the only reason, it is a good enough reason for me because for those few minutes, I felt like I was staring at an older version of you. So, to you my Bryson friend…. thank you for being such a sweet soul. I told you I felt like you are an old soul and I know you will do great things with your life because of my Ronan baby. He will watch over you:) And keep up your running and your mama too. I love that she is a runner as well.

After I landed, I grabbed a Taxi at the airport and headed to our house. I know I could have had a hundred different people pick me up, but I didn’t want the hovering. I wanted to be brave. I wanted to walk into our house, alone; and do whatever I needed to do. I needed to come home and do this by myself. You’ve been pulling me there for a couple of weeks now. I walked in, threw down my stuff and started screaming for you. I called out your name 20 times and then I ran into my bedroom and there you sat, on our dresser, in your urn. I grabbed you, kissed you, picked you up and held you. I took you into your room and sat in there with you for a long time and screamed for you, talked to you, and cried for you to come back. I opened up your urn, which I have been so afraid to do. I was so scared to see you in there. I took the cotton out and peeked inside to find all of your ashes in a clear bag. I took out the bag and held you and stared at you. Your ashes look like sand. I stayed with you in your room for a long time and wept. I read the sticker on the bag that said that these were the remains of Ronan Sean Thompson. Cremated on May 12, 2011. I almost passed out. You were born on May 12, 2007. I don’t even know what to think about this except it makes me physically ill. And it is insanely cruel, sick, and twisted.

I didn’t really tell anyone I was coming home, but Stacy knew. She showed up at our house and found me in your room, holding you, sitting on the floor crying. She sat and hugged me and rubbed my back. She picked up the phone to talk to your Daddy because I couldn’t answer it. I felt o.k. with her being there. It’s hard for me to break down in front of people and to not push them away. I’m not scared to do this in front of Stacy. I know this is not only because she is an amazing friend, but it has to do with the fact that she lost her sister and she can unfortunately, relate to my pain. This makes it easier for me to let her help me and as much as I try to fight her on it, I usually give in. I gave in tonight and let her stay with me and drive me to where I am staying as I cannot face being at our house right now. She insisted on staying the night, but I pulled a total Ronan move and kicked her out of my hotel room. She didn’t want to leave, but respected that I needed her to. I came home for a couple of reasons and one of them being that I need to grieve about you as I have not had a chance to breakdown fully yet. I cannot do this in front of your brothers and I have been holding this in since you died. I have to let go of these tears that I need to flow for hours upon hours. I’ve cried about you here and there, but not really crying as I have such a responsiblity to Liam and Quinn. I cannot let them see me this way. This is my time that I need with you. Just you and me, Ro.

I’m not here long and I will return back to San Diego on Thursday. I needed to see you. I need to see my therapist. I need to take care of some silly things too. I mostly just need to be, to scream, to cry, to throw things, to talk to you, to yell out loud to you that I need you and can’t live without you. I need to sit in your room like I did tonight and talk to you. I need to do this all alone because I am your mom and you are my son. And there are things I need to tell you that nobody else needs to hear. I need to feel you, to try to sleep without my medication so I can actually remember the things I dream. I need to see you, Ro. I cannot take not seeing you in my day-to-day life anymore, but to not remember dreaming about you is killing me. I need some alone time too. Some quiet to be able to sit and think about you, your life, my life and what the fuck I’m going to do now. How the fuck I’m going to go on because as my dear friend, Charisma, said today, I do not have a choice. She chewed my ass and I mean that in the nicest way possible. I needed to hear the things she said today, as hard as they were to hear because all I felt like screaming back to her was that none of what she was saying, mattered; because you are gone. She is the rational one though; I am not. I know she is right. But now, I need this time with you so I am going to let you guide me little one. I need a day to just cry about you for as long as I need to without having to worry about your brothers seeing me this way. If I don’t do this for you, for myself, I’m going to crack. Mental institution, here I come. I don’t want this to happen so here I sit, alone with my tears and with you. This is exactly what I need now and it is long overdue.

So, my sweet. It’s late, I’m tired without my Ambien so let’s give this organic sleep thing a try. I will wait for you in my dreams. I love you, Ro. To the moon and back forever. I hope you are safe and happy. I miss you so much.

xoxo

Sometimes it takes a really good fall to know where you stand

Where have I been the past 24 hours? Dead. Or the closest I’ve ever felt like dying. Yesterday, Dr. Kushner came to see us and we got the news that Ronan’s bone marrow is now longer clear of Neuroblastoma. All 4 sights from his scans a couple of weeks ago here are positive which explains all of the activity on his MIBG scan. The scans at PCH came back as clear… but that was 6 weeks ago. The most recent scans here show that his bone marrow is positive again which means that his cancer is spreading and we have to get it under control. So, I spent all of yesterday in a thick fog with my head spinning. I made it though the day while Woody worked but by the time he returned to the hospital, I was a complete mess. I spent much of the evening sneaking out of the room while Ronan slept…, throwing up. At one point, I found myself huddled up on the floor rocking back and fourth with my head spinning so quickly I felt like I was going to pass out. It was the first time in my life that I could not get myself back under control. I was sweating, crying, and could not even form a thought. My sense of smell was so heightened, that I couldn’t deal with any of the smells in the hospital. The smell of food and cleaning products combined were enough to make me want to check myself into the loony bin. When Woody returned for the night I told him I had to leave, that I needed some air. I somehow managed to get myself back to the RMH and passed out on the spot. I woke up around 11 p.m. with my raging headache that refused to go away. I got in the shower, dressed and walked down the street to the store to get some Coconut Water to try to rehydrate myself and take my Advil. I returned to the RMH still a wreck but forced myself to take my Ambien(which is the only way I sleep now) and fell asleep with my head still pounding and the thoughts consuming me that I cannot do this anymore, I cannot survive this, I cannot go on.

I woke up this morning, eyes bloodshot and red, still feeling defeated and as if I wanted to die. I cannot pick up my phone at this point to talk to anyone… but this morning when my friend, Ed called, I instantly knew I had to answer it. I was crying, I was still a mess and I didn’t hide it. I was on the floor of my bathroom as I listened to him tell me how he had pulled some strings and that the New York Knicks would like to host us at a basketball game. Did I forget to mention that my in-laws are flying out here on a whim with Liam and Quinn today? They are. We need them. Through my tears, I told Ed how excited the boys’ would be, how happy that was going to make them. My life now is all about squeezing every ounce of happiness for Liam, Quinn and Ronan, that we can from it. After I listened to Ed tell me how everything was going to be o.k., how I was a tough bad ass chick and I could do this it suddenly became very clear to me. I can do this and I will do this… this is not the end. Not even close. I can’t give up no matter how badly cancer is trying to win. I will keep fighting for my family, for my friends, and most importantly, for Ronan.

I picked myself up off the bathroom floor, showered, and headed to Starbucks before I returned to Sloan. On my walk there, I found myself getting stronger again. I texted my Mr. Sparkly eyes who is so amazingly helping me through all of this, even through all of his worry and pain for us. I told him about my breakdown, and how I took all of this morning to think about things as clearly as I can. How I have decided that I can do this because if I don’t, everybody loses and I am too strong to let that happen. How I won’t let cancer take my baby, my family, my friends or me. I refuse to give in but sometimes I have to breakdown in order to get my strength back. He texted me back something about my unbelievable insight, bravery and compassion. I thanked him for loving me and never giving up on me. I have so many people that believe in me and who know I can get Ronan through this. Last night, I got a taste of cancer winning and it was the most awful thing I have ever tasted in my life. I almost let it win. Today is a different story. Today, I walked the streets of New York throwing fists in the air and refusing to give up. I have too many people counting on me to let that happen. I am a mother and that makes me the toughest person in the world; next to Ronan.

We will be discharged from the hospital this evening and Ronan seems to be feeling better. We have taken him off the morphine drip and he is now wearing a little pain patch on his skin. I know the radiation is working just like this round of chemo is. I know we will get his bone marrow clear again. We will scan Ronan in 2 weeks to see how this chemo has worked. Depending on the results, we will either do another round of the same thing or go on to the NK-Cell trial like we had originally planned. I have come to learn that plans cannot be made when your child has cancer. All I can do is pray to God that Ronan remains pain free, he is happy, and we will take everything day by day. As much as I love a plan and how hard it is for me to let everything go, I have no choice. Every second of the day I have with Ronan is a gift and I have to make every second count. He has no idea his brothers are coming tonight and he is going to be so happy. We have decided that Liam will stay until Tuesday and then fly back to Phoenix with Mimi and Papa. We will keep Quinn here with us until April 3rd, and he will fly back to Phoenix with Woody. Ronan needs his brothers and if it means we have to pull them out of school for a bit, so be it. Our as a time as a family together, getting Ronan healthy is the most important thing in the world. Everything else can wait.

To all of my family and friends calling and texting. I’m sorry if I don’t respond. I listen to your every word but the one thing I cannot handle right now is talking, listening, and reading your words as you all cry and fall apart. It scares me to see you all so scared. I need you all to be strong for me right now and I can’t handle your tears. It hurts me to see you all hurting which is why I promise to be stronger for you. I need your words of encouragement… I cannot hear how your hearts are breaking and I know it is unfair of me to ask that all of you hide your pain, but that is what I need right now. There will come a time when I will be able to cry with you and you’d better believe that it will be because of tears of joy. I refuse to think any other way.

Thank you so much for all of your love that surrounds us and please continue to pray for us, for Ronan. We need all the positive love, light, and strength that we can get.

xoxo

Do you know if this hotel is pager friendly?? I’m not getting a sig’ on my beeper.

It’s days like today that make me really angry at cancer. I pretty much sat and held Ronan the entire day. We snuggled in bed and on the couch and watched movies. He won’t let me leave his side; not that I would want to. We watched “The Fantastic Mr. Fox,” and the ever so appropriate, ” The Hangover.” (hence the title of my post tonight) I seriously think that is one of the funniest movies ever and I don’t think I could ever get tired of it. Ronan laughed a lot during the movie in spite of his pain. I’m not censoring much these days from him, especially if it makes him laugh. He is feeling awful and has been fighting a low grade fever most of the day. I’m pretty sure he’s developing Mucositis, just like he did with Round 4 of his chemo. He’s telling me his throat hurts, he’s not talking much, he doesn’t want to eat. He’s in pain and just wants to be held. I’m pretty sure we will end up at the hospital if I can’t get his fever to go away. I am positive his ANC counts are at 0. That means no immune system at all. Poor baby. I would give anything to take his pain away.

Our Saturday should have been spent at the twins’ basketball game and at our dear friends son’s 2nd Birthday party. I was so sad to miss both of those things today but I am glad Woody was able to go and take the boys. As my Niki said tonight… next year we will all be together to celebrate her little one turning 3. Thanks my friend, for checking on me the entire day even though you were in the middle of your son’s birthday. You are so amazing to me. Woody and the boys’ had a blast and came home so tired. They are now all snuggled up in bed while I sit here and will stay up as long as I can to watch Ro and his fever. I spoke to the on call doctor tonight and she said as long as his temp does not go above 100.4; we don’t have to come in. Hoping we make it through the night.

I still hate the nights. The nights where if and when I fall asleep, my dreams are filled with such vivid nightmares that I toss and turn all night long. The nights where I no longer get to sleep with my husband because Ronan refuses to share our bed with anyone but me. My poor Woo… what kind of a man would allow a child to kick him out of his own bed? Only the kind of man who has a heart of gold and who would give up anything and everything for his son. I feel awful. I miss Woody and our precious time we used to have together staying up late and laughing at silly things that we would talk about at night or watch on T.V. while the boys’ slept. I feel like the rug has been pulled out from underneath me in so many ways. I’m tired and we still have such a long road ahead. Will this nightmare ever end???? Will I ever get my normal life back??? Everything is forever changed; and it better be with a very sweet outcome. All of our blood, sweat, and tears will save our baby. I swear to god on my life. Fucking cancer.

That is all for tonight. Going to try to unwind while watching my sweet lil’ man sleep. G’nite, sweet dreams my loves.

xoxo

Do you know if this hotel is pager friendly?? I’m not getting a sig’ on my beeper.

It’s days like today that make me really angry at cancer. I pretty much sat and held Ronan the entire day. We snuggled in bed and on the couch and watched movies. He won’t let me leave his side; not that I would want to. We watched “The Fantastic Mr. Fox,” and the ever so appropriate, ” The Hangover.” (hence the title of my post tonight) I seriously think that is one of the funniest movies ever and I don’t think I could ever get tired of it. Ronan laughed a lot during the movie in spite of his pain. I’m not censoring much these days from him, especially if it makes him laugh. He is feeling awful and has been fighting a low grade fever most of the day. I’m pretty sure he’s developing Mucositis, just like he did with Round 4 of his chemo. He’s telling me his throat hurts, he’s not talking much, he doesn’t want to eat. He’s in pain and just wants to be held. I’m pretty sure we will end up at the hospital if I can’t get his fever to go away. I am positive his ANC counts are at 0. That means no immune system at all. Poor baby. I would give anything to take his pain away.

Our Saturday should have been spent at the twins’ basketball game and at our dear friends son’s 2nd Birthday party. I was so sad to miss both of those things today but I am glad Woody was able to go and take the boys. As my Niki said tonight… next year we will all be together to celebrate her little one turning 3. Thanks my friend, for checking on me the entire day even though you were in the middle of your son’s birthday. You are so amazing to me. Woody and the boys’ had a blast and came home so tired. They are now all snuggled up in bed while I sit here and will stay up as long as I can to watch Ro and his fever. I spoke to the on call doctor tonight and she said as long as his temp does not go above 100.4; we don’t have to come in. Hoping we make it through the night.

I still hate the nights. The nights where if and when I fall asleep, my dreams are filled with such vivid nightmares that I toss and turn all night long. The nights where I no longer get to sleep with my husband because Ronan refuses to share our bed with anyone but me. My poor Woo… what kind of a man would allow a child to kick him out of his own bed? Only the kind of man who has a heart of gold and who would give up anything and everything for his son. I feel awful. I miss Woody and our precious time we used to have together staying up late and laughing at silly things that we would talk about at night or watch on T.V. while the boys’ slept. I feel like the rug has been pulled out from underneath me in so many ways. I’m tired and we still have such a long road ahead. Will this nightmare ever end???? Will I ever get my normal life back??? Everything is forever changed; and it better be with a very sweet outcome. All of our blood, sweat, and tears will save our baby. I swear to god on my life. Fucking cancer.

That is all for tonight. Going to try to unwind while watching my sweet lil’ man sleep. G’nite, sweet dreams my loves.

xoxo