Like a Little Million Stars Spelling out your Name

Ronan. Just when I think I have a handle on something…. like my sleep, turns out I’ve spoken too soon. This sleep thing, for the past week has been awful again. I can’t unwind, when I do, I toss and turn, or just can’t fall asleep. Tonight was awful. My body is so tired that literally, everything hurts. I swear even the strands of my hair. Your Daddy was trying to get me to unwind, but I was hurting so badly, I couldn’t lay still. I sat in bed with him and just cried while he did his best to comfort me. What did I do? I pulled away and said things like he promised me he wouldn’t let you die, that everything hurts too much, that Romeo died with Juliet so why couldn’t I die with you? I am pretty sure my pain, of losing you, is way worse than their’s was. I got up, rambling something about needing to break a window. Your Daddy followed me and grabbed me to because I think he really thought I was going to. It started to storm out really hard. Quinn ended up in our bed with us, sobbing like a little puppy dog because he said he misses you. I just held him and cried too. It was all I could do. Your daddy was the one doing the talking. He told Quinn things like he bets the storm was your way of telling us, not to be so sad. I think it was your way of telling us, that you are so sad too, because you miss us so much. My head is spinning thinking of the ways we all miss each other now. Of how we were never supposed to be apart.

My body is now so tired that it just won’t sleep. I’m past the point of tired. Can somebody just shoot me in the head? Oye….. started that last night, Ro. Guess I was not in such a good place. But when am I? That’s why nights like tonight, are necessary. For as much as I want to hide and avoid people, it’s nights like tonight that show me that I cannot. Because I am capable of having a slightly good time. Good time may be pushing it, but Ro, it felt better than my nights have felt in a long time. I’ve been really good at not doing anything with ANY of my girlfriends. No more movie dates, dinners out, etc.. Nothing. Not a thing. Well, I threw a little something together, last-minute to try to break up this rut I’m in. I saw that there was a Roller Derby tournament going on tonight. You know me and my big mouth. I have blabbed about this Roller Derby thing since before you were sick. I have had your Papa Jim all psyched up about it, saying he’d fly all the way here, to watch etc, for two years now. I acted all tough and badass and told him I was going to try out. I had your Nana all worried, because she thought I was serious. I had a plan, and I was mostly kidding, but I continued on talking about it because I just couldn’t let it go. And your Papa Jim and I loved seeing your Nana all riled up; upset that her little girl, could possibly get hurt doing something so crazy like Roller Derby. Then you got sick. And all the jokes stopped. And all the teasing stopped. Nothing was funny anymore. Life became……so serious. So much more serious than I ever though was possible.

When I started looking into the Roller Derby thing again, I thought to myself, this could actually be really good for me. I really think this is something I could check out. What a great way to get some of this aggression out. So, I decided to grab a couple of girlfriends, to go and watch. A night out? Yes. It’s time. A night out with just a couple of girls, is way overdue. So, I asked my new friend, Mandy Bee to go with me. She’s from Canada, Eh, and we seem to have some sort of connection. Oh yes… this little Mandy Bee. The one who drops bags full of candy off for me as well as kick ass leg warmers. The one who stalked me and I liked her from the second I laid eyes on her. The one who cusses like a sailor and has a dark side which sings to my soul. This new little Mandy Bee of mine feels like someone who I have known in a past life or something. I like this girl. A lot. I asked her to come with me. She was game, right away. I also asked my dear friend, Melissa to come as well. My dear Melissa whom I never get to spend time with, but she is someone I always want to be around. She makes me feel safe. And sad. And happy. And it feels good to be safely sadly happy, around her. Because she knows. She sat with us so many days at the clinic. You used to laugh when her cell phone would ring and chirp like a bird. She loves you. She misses you. She’s never gone away. She hadn’t met Mandy yet. I thought the 3 of us, together, would make a good team. I was right. Melissa picked us up at our house. We hung out for a few minutes and then we headed out to the West Side of the Valley. The chatter was easy in the car. Honest and true. Just the way I like it. A little dark too. We got to the Roller Derby Rink. Lots of tough looking girls skating around everywhere. We found some seats and got up to talk to some of the Roller Derby girls in the booth behind us. We threw lots of questions their way. Turns out, every Wednesday, you can come and get familiar with what exactly goes into this Roller Derby thing. Turns out, every Wednesday, they have try-outs. Radness. Mandy and I locked eyes. Sign us up, please. Melissa laughed and said she would come and watch. I told Mandy, after this Fashion Show awesomeness, you will find me on the rink. We shall see. What have I got to lose, Ro? NOTHING. What have I got to lose, if I don’t try this out? Regret. Regret is an awful thing to be chained down to in life. I won’t do it. I want to try this, so I think I will. Go Big or Go Fucking Home.

After we watched the match, which is totally confusing by the way. They really have a strategy down, those girls. It’s not just girls in badass outfits, skating around, pushing and tripping each other. There is a reason behind the madness. I wonder if those girls, have a reason behind their madness, like me. I’ll bet not. I’ll bet nobody’s reason behind their madness is because their almost 4-year-old, died of cancer. I have a feeling, I’ll be solo on this mission. It’s o.k. I like being the lone wolf. I always have. I work best this way. So, Ro. After the match we headed out and decided to grab some dinner. We stopped at St. Francis to grab some food. I was wearing my purple F U Cancer sweatshirt and as we made our way through the restaurant to sit outside, so we didn’t have to wait an hour and a half to be seated….. a lady at a table yelled at me that she liked my sweatshirt. I told her thanks and she asked where I got it. I told her my friend had made it for me. She then told me that her sister had just been diagnosed with Breast Cancer and that she would love my sweatshirt. I told her then she had to have my bracelet and I took my Fuck You Cancer bracelet off of my arm for her. She read it and looked up at me, smiling. I knew I was going to have to tell her, about you. So I pulled out one of my little cards, with your picture on it. I started to explain your story. Then man next to her, interrupted me. “What was your son’s name?” He asked. I simply said, “Ronan.” His eyes welled up with tears and he stood up. “Oh my goodness. I am (crap I cannot remember his name) the Chaplin over at The Ryan House. I have prayed for your family, since I heard about Ronan. I’ve read your blog. FUCK YOU CANCER!” He grabbed me for a big hug. “I’m so sorry about Ronan.” My heart sank. But my heart, also fluttered too. The Chaplin of the Ryan House, just said, “Fuck You Cancer!” It totally made me laugh. We stood and talked for a few more minutes. The girls and I then went to sit outside to enjoy some beers and food. YUM. Beer, Food (I ate!) and new and old friends. It felt good just to be sitting outside, on a crisp night, with this new friend of mine and this old friend of mine. And to watch the way the 2 of them, got along. LOVE. LOVE. LOVE, Ro. You know how I love to watch relationships form. It’s like a science experiment to me. The 3 of us, mesh well together. The night ended around 10:30. Your little stalker brother, Quinny, was getting worried. That’s the new nickname, I’ve given him. I was supposed to be home (or I told him I’d be home around 9:30) When the clock turned 9:31, I looked down at my phone and had 8 missed calls from him.(or so we figured out after about 15 minutes of us girls freaking out that 8 missed calls had come from some creepy unknown phone number( our house phone which I don’t even know the number to because we don’t use it) Turns out, it was Quinny, wanting to know where I was. I told him I would be home soon. I then gave him the nickname, Little Stalker. I thought that was pretty PG rated of me. It could have been Little Fucker. The girls and I laughed about the phone thing, forever. It felt nice.

Ro baby. Started all of this a couple of days ago. It’s Sunday Funday now. Or Sunday I Fucking Hate you day. Except today, wasn’t a bad day. I was gone all day, helping out with Fashion Show things. It’s this week! Can you believe that, little man? All because of you. Bittersweet to say the least. But we are doing everything, just the way you would have liked it. Just the way, you would have rocked it. If only you were here, to enjoy it. I so thought you would still be here. Remember how I thought we would still be going back and forth between New York and here? How I was so ready, to pack up my life, to live with you in New York? How I wasn’t scared because I knew the two of us would be together so that was all that mattered. How New York, quickly felt like our second home. As if we had lived there together, in a former life. Remember how we used to spend the days, roaming the streets, not caring that you had cancer because we knew New York was going to heal you? It was going to save you. How the fuck were we so wrong?? How did that not happen, baby? I’m so sorry, Ro. You know I would give anything to change this. I miss you so much. My whole heart feel like it is missing, without you. But I’m still here, fighting for you. Because as I told Michael Dee, Sarah Love and Heather while they sat in my kitchen last week…. what choice do I have? You, Ronan Sean Thompson came into this world, kicking, screaming and crying. I had to watch you leave this world, silently. Not being able to do any of those things because cancer robbed you of that. So now I am fucking left here; and it is my job to kick, scream and cry for you until the world starts to listen. Until this little army of mine, turns into a REALLY FUCKING BIG ARMY and Childhood Cancer starts to get the attention it deserves. Because I refuse to just sit back and watch as these poor innocent children are fucking MURDERED before our very eyes but nobody cares. Because it’s not their child, right Ro? It may not be their child but what if it is someday?? Or what if it ends up being their grandchild or cousin or niece or nephew or Godchild? What assholes, will all these people who have chosen to IGNORE Childhood Cancer, feel like? Fucking Douchebag Assholes, I’m sure. Guess what Ro? I know a whole bunch of people who did not even know you, who DO NOT want to be Douchebag Assholes. They want to help. They want to be a part of something because they know this is something REAL. In a world full of SO many FAKE PLASTIC TREES. The Fake Plastic Trees in life will only get you so far, right Ro. The Fake Plastic Trees will leave you with an icky taste in your mouth that will never go away. No matter how often you CHOOSE to look away. Because guess what Douchebag Asshole People???? Now that you’ve read these words….. It’s a CHOICE now. You CHOOSE. I hope you can sleep well at night. With his big, blue eyes, piercing into your soul. Because they are that life changing. And trust me. I now know a lot more about life, than I ever hoped to. And I had to learn the hardest way possible. As of now, you DO not. So fucking do something. Or do not take his gift. Go on. Carry about your days until you Louis Vuitton luggage, becomes too heavy and your Xanex becomes to weak to numb your pain. Are you still going to look the other way????? That makes me sad. I’m so, so very sorry. Ronan deserved to be here. Do you?????????? If so, make it worthwhile. Because to be any other way, is just not enough. And I know deep down, we all want to be more than enough.

Um, Hi, Ro. Are you still there?? I’m sorry baby. I think my post got hijacked by Inca tonight. Apparently, I had a lot to say. I’m not even sure what just went on up there. Oh well. Fuck it. Most of the time when I write to you, I feel like I’m having an out-of-body experience. I feel like I get so lost in my writing that I am watching from above, while I’m really off somewhere else, playing with you. I love this time, so much. I’m sorry it has to be this way for now. I am trying so very hard to do this. To make you proud of me. You push me and you give me strength. You are a gift to me every second of my life. I love you. I miss you. I hope you are safe. Sweet dreams, little one.

xoxo

This is now on the John Lennon Wall in Prague thanks to the raddest girl who has ever lived in NYC. Miss Rachel Goldman. Thanks Dolly. You made my day with this.

xoxo

Life’s no way to treat an animal

It is with a heavy heart tonight that I tell you we are returning back to Phoenix. We came out here, full of hope; yet Woody and I both knew that it was going to be a tough road to travel. We met with Dr. Mosse about starting MIBG therapy to try to get Ronan’s disease under control; but with much sadness in her eyes she told us that this therapy would never cure Ronan or much less do anything for him. I knew this morning before we left the RMH for CHOP that there was little hope, as Ronan’s pain is getting much worse. I do not in the least regret coming out here. It was something that Woody and I, as parents had to do to make sure we could know in our hearts that we tried everything we could for our son. I believe it was a gift to have Dr. Mosse deliver this heartbreaking news to us, as I would not have wanted to hear it from anyone else. I cannot even express to you what an amazing woman she is and I am so thankful that she has had the chance to spend a little time with our son. I know she will work harder because of him and will one day, find a cure for this disease. After Dr. Mosse told us that the treatment would not work, Woody broke down and I went into complete shock. I could only focus on holding my husband, watching his tears, and just as he started crying, it started pouring rain outside. The rain only lasted about 5 minutes on this sunny Philly day. I know the reason for this rain.

The rest of today has been a blur. We have Ronan’s pain under control and are planning to head back to Phoenix on Friday. Woody and I have spent most of the day crying, talking, and whispering together. We have made promises to each other that we will keep. As Woody said, “Cancer will not take anything more from us than it already has.” It will not destroy our marriage, our family, our boys. We will take control over the things that we can. While Ronan has been awake today we have been very hush hush about everything, as he does not need to know that our hearts are broken. We have made phone calls to a few people, but that is about the extent of the phone calls today. All of this is just too much. Woody and I have both decided that we hate the saying, “Everything happens for a reason.” There is no reason for something like this.

We have some tough decisions to make yet I have no doubt that our little man will guide us though. We will do what is best for him and respect his body, his life, and his time. I have spent the entire night curled up next to him, singing to him, whispering sweet nothings in his ear, and kissing his little face. Ronan has filled my life with so much more love than I ever knew existed. The almost 4 years that I have had with him have been pure magic, bliss, and we have an unbelievable bond that will never be broken.The thought of being without him is eating at my soul, as he is the best thing that has ever been mine. I don’t know how I am going to go on without him but I have a feeling my twin 7 year olds will be great helpers. They deserve the best life possible after living through this nightmare and Woody and I are determined to give it to them.

I am not brave, strong, or fearless anymore. I am just a mom. A mom to the most beautiful boy that was put on this planet and whom I will think about every minute of everyday for the rest of my life. Being his mom, was the best thing that I have ever done and will ever do.

Tonight, I asked to speak with Dr. Mosse one more time. We went alone in a room and I told her, as a mom, I had to know in my heart that I had done absolutely everything possible for Ronan. She told me I had done that and more. I begged for clinical trials, asked about things I had heard about in Germany, Canada, homeopathic hospitals…. asked for anything. She told me if there were anything, she would have done it for us. I asked if we made mistakes on the choices we made as far as his treatment went. She said absolutely not, and that we couldn’t look back. His disease is everywhere and spreading so rapidly that the best thing we can do now is just love him like we’ve never loved him before. I cried to her, asked a few more questions, and thanked her for her compassion and grace.

There are not enough drugs in the world to knock me out or make me numb to this. Nor would I take them if there were. As of now, you know I am still hoping for a miracle and not giving up. I will never give up on Ronan but I will respect him and his life. He is going to lead me to where he needs to go, when it is his time. I, as his mother, could not ask for a braver soul to surround me at this time. I will not leave his side until he is ready for me to go.

Please continue to pray for Ronan and our family. Please don’t take anything in your life for granted. And please don’t send any mother fucking flowers. I told Fernanda tonight, if anybody sends me flowers, I will lose it. If you feel compelled to do anything, send a card, write on my blog, spread around Ronan’s story, ask for prayers, donate blood or platelets, or donate to his foundation. I will do something amazing with the money we are raising and I know it will come to me when the time is right.

Thank you to all of our friends and family who did not disappear during this time and who chose to surround us with the love that we so need. Thank you to all of you who love our baby even without knowing him. I am so thankful for all of our nurses and doctors who have stood by our side and who continue to do so. Please send us your strength to get though this. We are a strong family, but we are about to walk through HELL, even more so than the past 8 months. We have to come out the other side.

Love you all,

xoxo

THE CHOSEN MOTHERS

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.

As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.”

Finally, He passes a name to an angel and says, “Give her a child with cancer.” The angel is curious. “Why this one God? She’s so happy.”

“Exactly” smiles God, “Could I give a child with cancer a mother who does not know laughter? That would be cruel.”

“But, does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”

“But, Lord, I don’t think she believes in you.” No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps -“Selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them.” She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side.”