A never normal world

 

 

 

Ronan. Normal will never be my life again. Quinn woke up this morning. Throwing up. Headache. I look at your daddy. He knows what I am thinking. I send him a text later in the day. “Quinn is still not feeling well. I’m sick to my stomach over this.”  Of course it’s because he has a brain tumor or something. It cannot just be he has a little bug. Your daddy tells me to get him into our Doctor tomorrow. To call the Barrows neurologist that we took him to about 6 months ago for this very same thing. A normal flu will never be my thought process again. My stomach will now always drop over the little sign, symptom, or clue. I will always panic on the inside while remaining calm on the outside as I don’t want to scare your brother. That brother of yours with the worry brain the size of china. That brother of yours who now asks if I am going to die over something like a sinus infection. That brother of yours who looks so much like you, but with grey eyes and darker features. That brother of yours who misses you so much that it brings tears to my eyes when I watch him and the way he is trying to find his way, without you. We are all so broken. Sometimes we do things like all sleep in our room because we don’t want to be apart. So, Quinn sleeps in between your daddy and I, and Liam is happy as a clam on the floor. We did this last night. We do this a lot. We spent so much time apart that it’s almost as if we don’t know how to come back together. Nights like last night make everyone feel a little safer I guess. It still does not make things better. I am still always sad to wake up and not find you here, with us. That will never change.

I went inferno hiking today. 111 degrees it was. I don’t care. I didn’t notice the heat. I took my little friend, Kassie with me. My inferno hiking partner in crime. She’s slightly addicted and I think I might be the one to blame. She is always hiking without me while I am away. It was nice to have her with me today. Sometimes the company is nice as my thoughts like the break from the beating myself up over and over again. After our hike, I came home and took care of Quinn. I also tackled the mounds of laundry and chores that needed to be done around the house. I have a list of about 100 things that I need to do foundation wise and I knew that I would not be able to start them, until the chaos that had invaded our house due to being gone, was handled. Mission complete. I can start on your things tomorrow as my head feels a little more clear and after I take Quinn to the doctor.

Am I being paranoid? Probably. Do I have the luxury of not being anymore? No way. Do I wish I did. Of course. But it will never be this way again. I have your Macy flying in on Tuesday. She will stay with us for about a week. She knows how hard the holidays are for us. She is so good about coming to the rescue when we need her most. We are going to Foster the People on Friday night which I am so excited about. Assuming everything is alright with Quinn. He asked me if he could still go to basketball camp tomorrow. I told him no. I have not told him yet that we will be going to the doctor. Fun stuff. I may need to end this post tonight now. It’s been a long day and I am tired. I wanted to leave you all with something that another Neuroblastoma dad I know wrote. He has a son, Will, who Dr. Sholler has treated for a long time. Will is doing great and is basically living with this disease, all thanks to Dr. Sholler. Please check out his page if you get a second.

http://www.willlacey.com/2012/06/oblivious.html

This is from Will’s dad, below. It makes me sad, frustrated, and confused. Why don’t more people care about these kids? Why is the funding for these kids so broken and overlooked? Who the fuck is in charge because they are doing a shitty job. Is anyone in charge? I pay taxes. A lot of them. I would much rather pay for these kids to have better chances then for some stupid war that is solving nothing. You are telling me we can waste money, to put a man on the fucking moon when thousands of kids are dying every year from the number one disease killer in America. WTF is going on? This happened to me. This can happen to anyone. When are we, as a country, going to stop looking the other way? When it happens to us? Not acceptable. If somebody would have dealt with this, like it need to be dealt with, my Ronan may still be here. The fact that I have to live without him because kids don’t get cancer, therefore, they don’t get the funding for research is the biggest crock of shit I have ever heard in my life. I’m stopping now. I’ll let Will’s dad, take it from here.

Despite what you may think from following along here on this website I do not – in fact – share everything about our life or our family.  There are challenges we face and obstacles to overcome that do not have a home here.  What I do share is about parenting a child with cancer and the extraordinary number of challenges that prevent great doctors from practicing life saving medicine and the absurdity that it falls to the parents of kids with cancer to fund trials.

The system to fund research in this country is broken.

It is broken because it is ruled by grotesque cronyism masked as a peer reviewed grant process that continues to fund the same old research over and over again.  And this is all set against a backdrop of dwindling resources combined with societal apathy about the reality of childhood cancer.

The reality is hard to look at.

It is reinforced by the media’s incorrect portrayal of childhood cancer as a “heroic” struggle involving smiling bald kids enduring harsh treatments and then going on to live normal lives. This is what we need to see – what we want to believe – because the truth is to hard to reconcile.

The truth is that the kids who aren’t killed go on to live anything but ordinary lives and their families – like mine – are broken.

The truth is that kids are killed – over 25,000 over the last decade in the US alone.  Their death and the torture chamber that their families live within is the reality. 

These kids die painfully – often slowly – as their parents sit helpless as they watch their bodies become disfigured and waste away.  They do all they can to try and comfort their child and watch the pain break through the impossibly high doses of medication while their souls are being eviscerated.  

A ragged bloody wound is all that remains of their once whole heart.  
A haunted minefield is all that remains of their memories of their child’s last days, weeks and months.

And still the funding does not come.  

And as these families are pulled down to the bottoms of grief and despair another family is unexpectedly thrust into the machinery that will one day churn them out the other end a broken remnant of what was once a whole entity.  

And on and on it goes as the world remains oblivious.

 

Goodnight, Ronan. I miss you. I love you. I hope you are safe. Goodnight all you lovies of this blog reading world. I just wanted to take a second to say thank you to any of you that donated to my Rissy’s mission trip. She just texted me to tell me that they are now 500 dollars OVER the amount that they were trying to raise. That makes my heart happy. She is leaving tomorrow. Please keep her in your thoughts, prayers, or whatever else it is, that you do. I will be praying to my Ronan for her. Love you all. Sweet dreams.

xoxo

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