I am going to take my anger out on my surfboard with some very mean looking waves. I will surf for Ronan and Ava, and all the other kids, who will never get the chance to.
F U Cancer.
I am going to take my anger out on my surfboard with some very mean looking waves. I will surf for Ronan and Ava, and all the other kids, who will never get the chance to.
F U Cancer.
Ava Ann Holder
7/20/2007 ~ 5/28/2012
Ronan. I am mad. Angry. Sad. This is an epidemic. This has to change. I am not going to sit here and scream the hundreds of swear words that I want to scream. I will leave that for another post because I will be respectful of Ava and her family. I’m sorry to them, Ava, and you.
I am done walking Ronan. There is no time to walk with this disease. I am going to take everything that is coming my way and run like I’ve never run before. Nobody is going to stop me.
I love you. Take care of Ava, please. I miss you. I hope you are safe. I promise to make you proud.
Ronan. Fucking fuck fuck fuck. We left AZ. Had to leave AZ. Just like we do, every summer. This year, I couldn’t get out of there fast enough. Last summer, I was in such a fog coming here. I think I was highly medicated. I don’t remember any of it, really. I left you at home. I left your urn and your ashes at home. This year, I didn’t. I put your urn at my feet in the front of the car with me. Safe and sound. I was not about to leave you behind this time. Who reads that last sentence that I just wrote, and is able to just go on with their lives? Who reads that sentence and just goes, “Oh, that’s nice, she tucked her child’s urn, at her feet because he died of cancer… I’m off to go shopping now and not help in this fight against childhood cancer.” I think a lot of people. I think a lot of people who still live in the world of puppy dogs, unicorns and rainbows. Those people, suck. I am thankful for those who read my words, close their eyes, are thankful for all that they have, but that is not enough. I am thankful for those people who do not just go on with their days, without thinking about Ronan or Ava or Esther or Ben or Liam or Hazen or Ezra or Saoirse… I could go on and on and on with the kids’ names that I know now. I am thankful for the people who take the time to donate what they can, because they know want to help against this war that we are in. I am thankful for all the love and support friends, family and strangers. Without all of them, things would not be happening the way that they are.
So, today we packed up our car and headed out of AZ. Out of our house that is slowly killing me. I could not get out of that state, fast enough. I could not take another day of walking past your empty room, not hearing the pitter patter of your little feet or your squeaky little voice. I don’t know how I’ll ever get used to not having you around. I feel like I am a shell of a person. I feel like I am a shell of a person yet I look back on last year and fuck… even that kind of scares me because I was in such a bad place. I think I spent the majority of the summer, in bed, crying. I think I was out doing crazy things like swimming in the ocean in the middle of the night and taking way too many sleeping pills. Looking back, I clearly was trying my best not to live. I seriously could have cared less. This year, I’m not better. Because you never get better from something like this. I’m just different. I want to be around to tuck your brothers in at night. Last year, I did not. And I don’t think it’s such a good idea to go swimming in the ocean, at night. But I am also aware that I still have that streak of crazy that exists in me and I never know when it’s going to come out which in turn usually means my pain needs to be fed by something other than sheer pain. Usually something crazy like a night swim or this marathon that I am running on Sunday and I have not trained a lick for. 26.2 miles without training is a little insane. But whatever. So is watching your baby throw up in bed from the chemo poison that is being injected into his body that is supposed to be saving him, but it turns out, is not. That is truly fucking insane. So is driving to San Diego with your baby’s body burnt to a crisp. Nothing is more insane than that.
We arrived here. Unpacked. Your brothers were hungry. We headed out to go to Costco but it was closed. Your starving brothers could not wait to eat and IHop was our best option. We ended up there where your brothers enhaled bacon, waffles, eggs, pancakes… you name it, they ate it. You would have loved our little breakfast for dinner outing. I was sitting there, thinking about Ava. I’ve been checking in on her all day through Facebook and her Caring Bridge. Nothing had been posted. Just as I was thinking about her, I got an alert on my phone. I read it, felt the color drain from my face, excused myself from the table and into the IHop bathroom I went to puke my guts out. I read the words, the Ryan House. Hospice. Not doing well. That was all I needed to see. It was if I was living last year, all over again. Fucking fuck. No. Not again. What is happening? Why is this monster taking all of these babes and nobody gives a shit? Because if they did, this would not be happening at the rate it is. Do you know what this looks like to us parents going though this? It looks like somebody is lining up these kids, one by one, and blowing their brains out. If that were the case, this country would be in an uproar. But because childhood cancer, is such a dirty little secret, everyone can just look the other way. That’s not fair. That’s not right. People need to start stepping up and making such a stir about this so that funding will be a little more fair. Give these kids a chance to grow up and get things like breast cancer or prostate cancer. Give them a freaking chance, you fucking idiot fuckwads.
Back to Ava. Back to the Ryan House. I’ve been quiet about this for a while. I am not going to say I am thankful that we got to go there, because no parent should be thankful that their child is dying, so they get to take them to this place. Ronan. The Ryan House, should not exist because kids should just not die. If only it were this simple. I did not think we were taking you there, to die. But everyone else knew around us. I thought we were taking you there, to get your pain under control. I was in shock. I still had hope. I heard the whispers all around me. I got the whole, “You are so calm.” Of course I was calm. You were not going to die. I was still going to fix you. I didn’t understand any of what was going on. I remember being confused as to why everyone was coming to see us. I felt like we were zoo animals on display. Like I was the mama bear in her den with her baby, hiding behind a glass wall, while everyone on the outside, was looking in at us. I didn’t know they were all coming to say goodbye. I didn’t figure any of that out until probably a day before you died. That we were not going home. I remember thinking that nobody knew what they were doing. Why was I the one asking for oxygen for you? Why was I the one calling your Dr. Maze to ask him what to do for you, in order to get your pain under control? Why were you getting all bloated? Why were you not peeing? Nobody told me this was all because your body was shutting down and you were dying. Nobody explained anything to me. And then it happened. Your little heart, stopped beating. Somebody came in after you had left. They brought in a tub of water. They said they were going to give you a bath. I remember looking up at them and saying, “No you’re not. I’m going to give him a bath.” I remember this person saying to me, “You are very brave.” I looked up, dumbfounded. “I’m not brave. I’m his mom.” I bathed you. I dressed you. I kissed you. I didn’t hold you. I didn’t know I could have. I didn’t know I could have rocked you. Held you or spent as much time with you as I wanted to. I wish I would have known that. I think I stayed in the room for a while with you. But I let somebody else pick up your body and take you away. I wish I would have done that. It was not anybody else’s job. But I knew none of this. I am so sorry.
Then we left the Ryan House. Bye! Have a nice summer! I think we were checked on and I know we were refered to a place called New Song. But nobody from the Ryan House ever mentioned the MISS Foundation to me, which blows my freaking mind. Ummmm… hello. They work with bereaved families. Ummmmm… hello. I know you are aware that they exist and I know you know who Dr. Cacciatore is, because she is a badass and truly has a gift for helping these families. Where was Dr. JoRo when I was at the Ryan House? Why didn’t anybody ever offer her to me, to hold my hand through what it is, that she knows best?? Why is it, that out of sheer desperation for my life, that I had to find her by screaming in bed one day, not able to get out and googling, What to do if you have a dead child in Arizona? I don’t know. This is what this woman does and she only does this for the fact that she truly wants to help these families. This is not about the money for her. This is only about taking her pain, experience, sadness, compassion, and using it for good. That is the thing that upsets me most. She saved my life, yet I had to find her on my own. There is a very good chance, that I would not be here if I had not found her. I thank you, Ronan, for helping me get to her. But it shouldn’t have been that way. Somebody at the Ryan House, should have offered her to me. She is a gift and I was in shock. I would have accepted someone to walk me through the hell I was about to go through. Instead, I went though it scared, abandoned, and alone. That’s the truth. There were so many mistakes made though out this whole your child has cancer, process. I am not going to stop until they are all fixed. Dr. Jo will be a part of everything that I do. She is part of my fixing the world, package. It’s as simple as that.
I went for a little run tonight. I talked to you about Ava. Please do everything I asked. Now is not the time to rebel, little one. She needs you. Take good care of her. I will try to help her mama in anyway that I can, but I feel helpless. There is nothing that I can do or say that is going to make this easier. All I have to offer her is I know what this feels like. And I am not dead from the pain. I am still here. That’s all I’ve got. That and I am just so sorry. I love you, Ronan. I miss you. I hope you are safe. Sweet dreams, baby doll.
Ronan. I had a lot to get done today. A lot of stupid, everyday stuff. I had a my little Mandy Bee, to help me get my things done. Sometimes I need help. This little Bee knows it without me even having to ask. Even if it’s just things like going to the post office, picking up dry cleaning, etc… This little Bee swoops in, drives me around, helps me with all of my little chores because some days, even the littlest things, seem like big things to me. That’s how it was today. I walked into Walgreens with this little Bee. I ran into an old friend of mine. One that has quietly been waiting for me, on the sidelines. The last time I saw her, you were sick. She’s been reaching out to me, but from a distance which I so appreciate. It was pure alignment of the stars, that I ran into her when I did. She was sitting in a chair, waiting for a prescription. It took her a minute to recognize me as I was in my best undercover Fedora Forever 21 hat like I love to wear, when I am feeling in a piss off world kind of mood. I looked at her, without saying anything for a minute. As soon as she recognized me, she got up to give me a hug. I stood with her for a while. I nuzzled into her neck and started to cry. Mandy Bee swooped into grab the items I was carrying, before I dropped them.
We fell into a rushed/emotional talk. I then said to her, “I’m leaving tomorrow. What are you doing, tonight?” We made plans to meet up and to catch up. I had a lot of shit to do, tonight, but I didn’t care. I needed some time with my Janet. We met up. It was as if no time had passed at all yet the entire world had changed. I caught her up on things. She knows the outside of my world like a lot of people do, due to reading this blog, but tonight I got to sit down with her and catch her up on my inside world. She made me laugh with her great stories of me and how we first met. I had forgotten the details as my memory is still long gone with most things in my life that happened in the past. I was telling her all of my crazy ideas about what it is I want to do for you. She just looked at me and said, “Do you remember how you met me??” I said, “Yeah. You were one of my professors. I was one of your students….” She goes, “Oh my god. You really don’t remember? You don’t remember how the course I was teaching was closed, due to it being all full of students? How you tracked me down, on campus, and begged me to let you into my class?” I just looked at her and said, “Ummm, no. I don’t remember that at all.” She goes, “Maya. This is how I know you are going to get this done. I told you, NO, that my class was full and I was not going to let you into it. You didn’t even give me an option. You somehow made me change my mind and open up one more spot for you. I did not want to. I even thought to myself, GOD, this girl is annoying. But you wouldn’t take no for an answer. And I told you no, more than once.” I smiled at Janet. “Yeah… I guess I kind of remember that now. A little bit.” The memory of this is still faint but I can remember parts of it. Janet went on to say, “You told me that I wouldn’t be sorry. You gave me some sassy pants attitude that you would be the BEST student that I had ever seen. Something in your eyes made me believe you. I knew there was something different about you. And so I finally agreed to let you into my class. And you know what, you were my best student. You sat in the front row of every class. You kept all your promises. You were my star student. One of the best I’ve ever had.”
I giggled at Janet’s memory. I guess after being in her class for a while, I also made her agree to go to lunch with me, even after she told me that she did not interact with her students, outside of school. I somehow got her agree to go to lunch with me and after that, our student/teacher friendship flew out the window. We became very close friends. The last time she saw you, we went to Chelsea’s Kitchen. I think you were still pretty little, but I remember you being such a handful even back then. In the best way possible, of course. I have no idea, where you got that from:)
Our dinner tonight turned into a 3 hour dinner. I listened to Janet tell me how proud she was of me for all I am doing. I let her words sink in. I listened to her advice as I have always admired the things that have come out of her mouth. Her words mean a lot to me. They always have. As we were leaving, some man who had been sitting by us for most of the night, was telling us goodbye. He got the gist of your story due to his overly curious mind/really wanted Janet’s phone number. He told me he was sorry about you and he thought it was really great what I was doing. I just looked at him, shrugged my shoulders and said, “I’m here to fuck cancer, in the ass.” True statement. Those are the words that came flying out of my mouth. I don’t think he knew quite what to make of my statement which in turn, made me giggle. My filter did not exist tonight, in that moment. This is just how I am. Love me or leave me. Take me as I am or let me go. I am o.k. with all of it.
I have one more little thing to say tonight. I don’t have a high tolerance, for listening to people complain about stupid shit in their lives anymore. Stupid shit such as, ” I am so stressed. I have this party to go to. I have this many errands to run. My kid has an ear infection. I didn’t get time to go to the gym. My life is so busy, stressed, awful and my kids are driving me crazy.” If you complain about this stuff, I can guarantee you, I will shut down. I will not say a word to you because I have mentally checked out. I have already written you off for the time being. I am not doing this to be mean or hurtful. I am doing this because all I am trying to do, is survive. I cannot exist in a world full of pretend problems. I don’t have the mental capacity to handle that. If you think I am being harsh or unfair… please take a second to read this. I think you will better be able to understand, what it is, that I am saying. This is from my friend, Ava’s caring bridge tonight. If I sometimes come off too harsh, jaded or unfair… you only need to read these words to understand why. My heart is sad, heavy and broken. I am so sorry to Christie, Ava, and her family. Nobody deserves this.
Written 7 hours ago by Chrisie Funari
i am sorry – I have bad news. This is so hard to sit here and type. I just got home from the hospital and am exhausted – we all are – nothing in comparison to Ava. Ava’s scans show that she has a lot of new progressive disease in the front part of her right brain, her esophagus/chest, pelvis and stomach area and in her spine. This is in addition to the disease she already had – her brain tumor and her tumor on left pelvis. This new disease did not show up on her scans 6 weeks ago – or on her follow up ct scan just 3 weeks ago. So, it means this new disease is growing rapidly. Ava got extubated last night at midnight. It is almost indescribable what it feels like to watch your child go through that. She will continue on daily dialysis and the goal is to keep her comfortable and keep her pain under control. Ava’s body is not able to handle any cancer treatments as her kidney’s are just not working. She has zero urine output and her legs and stomach are swollen since they are full of fluid. Her doctor said we would come up with a plan of care next week. Ava continues to be in pain so this afternoon she was hooked up to a morphine pain pump and she seems a lot more comfortable. We are so saddened by all of this and thank you for your continued support and prayers. We are taking it one day at a time.
-Is this what is going on, in your life? If not, shut up and be thankful for all the fucking soccer practices, ear infections, homework and graduations that you have going on. Seriously. I feel like I sound like a broken record. If you are going to complain about things that you should be thankful for, please be kind enough not to do it around me. Please continue to keep Ava in your thoughts, prayers, or whatever else it is, you might do. Then get up and go hug and kiss your kids because you are so fucking lucky, to have them. Reading Christies words ripped me to shreds. I know them all too well.
Ronan. Please take care of Ava. I can’t sleep tonight. It’s now 2 a.m. I have not been able to stop thinking about Ava, all week, but today she has been on my mind, all day long. I don’t like this world I live in now. I would like to go back to the world of unicorns, rainbows and puppy dogs where childhood cancer, does not exist. How many kids are going to have to go through something like this, before something is done? I am trying really hard to work as fast as I can, but it is not fast enough. This should not have happened to you, Ava, or the thousands of other kids I am hearing about. Enough is enough. I love you, baby boy. I love you. I miss you. I am so very sorry. I hope you are safe. Sweet dreams, baby doll.
Ronan. It’s days like today that make me realize, it can’t rain forever. I have had a really tough week. Grief completely knocked me down and shackled me to my bed yesterday. Literally. Your brothers are wrapping up the school year. It’s been a constant stream of end of the year stuff. We had their end of year, baseball party a couple of nights ago. That’s the straw that broke the already very broken straw on the camels back. I went to it. I put on my face of composure, grace, and happiness. Anybody that looked me in the eyes and truly looked would have seen what was going on. I spent the entire evening, looking for you, everywhere I went. Why aren’t you there, running after your brothers like everyone else’s siblings? Why aren’t you there, giggling and jumping on the trampoline with all the other kids? Why aren’t I scooping food on your plate and making sure you ate a good dinner? I know why. It’s always the same answer and I always hate it. It will never become an easy pill to swallow. I will choke on it for the rest of my life. I made it through the party. I reached my breaking point just as it was coming to an end. I looked at your daddy and said, “I have to go. This is too much.” I left the party without your brothers. Your daddy brought them home about 10 minutes later. 10 minutes more and I would have flipped out, big time. I don’t know what flipping out big time really looks like yet because I always seem to take myself out of the situation, before it happens. I’ll bet it would have ended up as me, huddled in a corner, refusing to leave the party until your daddy went and found you and put you safely in my arms. Where you belong. Where you should always have been.
So, it was the day after that party that I knew I was not going to make it. Your brothers last day of school. I was so shaky, all day. I picked them up, they were all excited about their grades and going to some trampoline park with their friends. I told them I would take them, so we headed over. We parked our car and headed inside. “Oh, shit,” I thought to myself. The trampoline park, looked like it threw up an entire elementary school, on that day. I think your brothers saw the color drain from my face. I just looked at them and honestly told them, “I’m sorry. I can’t do this today, you guys. Is it o.k. if we just go do something else?” They were both so sweet about it. I got an, “Sure, mom. It’s crazy in here.” We bolted out the door before we got sucked into the too much chaos that I cannot seem to handle well anymore. We went and got Mexican Food instead. I tried my best to play the happy mama role when it was all I could do, not to fall apart. I held it together at the restaurant. I did not hold it together, when we came home. I fell apart. I don’t do this often in front of your brothers. I did it yesterday. I went straight to bed at 3:00 p.m. I stayed there for the rest of the night. Your brothers and your daddy came to check in on me, but I had checked out. “Please, just let me be. Please just give me some space.” They did. I shut my bedroom door. I watched some really fucked up movie called, “We need to talk about Kevin.” I needed to get lost in the world of somebody else’s whose life was more fucked up than mine. This movie did the trick. I don’t ever watch movies anymore due to my lack of concentration. I did pretty well with this one. I felt so guilty about shutting everyone out. I did the whole, “You are a bad mama thing. Nice way to end your boys’ school year, you loser.” Yeah. I gave myself a beat down. I do that a lot. I know I am my toughest critic and my own worst enemy. But I did not have a choice yesterday. I had met with Dr. JoRo earlier in the day and we both knew I was going to lose it. I had a very shaky session full of a lot of guilt about you dying a little shame. I can usually gage the rest of my day on how our sessions go. I was a wreck during this one so it was no surprise I cracked. After my alone time, your Quinn came and curled up with me. He had his little head buried in a pillow. I heard him sniffle. “What’s wrong, baby? Are you crying?” He didn’t answer. I grabbed him and touched his little cheeks. I felt his big alligator tears. He didn’t want to talk. This is turn made me start to cry. I laid my head down next to him and started crying with him. I then started talking, while I was crying. “Quinn. I’m sorry. I’m so sorry this happened to your baby brother. He loved you so much. This is so unfair and wrong and he should be here. Nothing will ever make this right and I am so sorry this happened to us. It shouldn’t have. None of this deserved this. He was the best little brother, wasn’t he? I’m sorry if my being sad, upset you today. I just really miss, Ro. I am so thankful I have you and Liam. I love you both so much. I love Ronan so much too which is why we will make our lives even better, because of him. He is still around, leaving us little gifts everywhere. I love you. I love you so much, Quinn.”
We both got up. I told him I bought him a journal/drawing tablet. We sat in bed and I scribbled in mine and he drew some pictures in his, of you. You should see them. The are adorable and one actually really looks like you. I think the writing and drawing really helped him. It seemed to calm him down and he was so proud of his work. Writing and drawing seem to be a good outlet for him. He’s very much like me in that way.
May is almost over. Thankfully. I’m so done with this month. It was your daddy’s birthday yesterday. I think I gave him a really good gift and it had nothing to do with anything I bought him. The gift I gave him yesterday was priceless. I’ve been working on this gift, for a while. It’s one that has slowly been falling into place. Yesterday, I gave your daddy the gift of team work. Dreams. Visions. And making them a reality. We are both on the same page with what we want to do, for you. We had a little pow wow yesterday. One where we were able to voice our visions and get some feedback on them. I have no doubt in my mind, what we are going to do. Something huge. Something beautiful. Something that is unlike anything else that exists. Because you were that unique, which is why this will be too. Yesterday, the no word did not exist. No matter if it was said or not. All I heard yesterday was, YESYESYES. You CAN do this. I hear the word yes in every conversation I have now. If the no word ever pops up in my life, I’ve already figured 10 ways to get around it and make it a YES. To me, I’ve had the word NO thrown in my face, the hardest way possible, by losing you. Therefor, no will never be an acceptable answer again. Not with anything I do. After our pow wow of ninjaness, we went to dinner. Liam and Quinn were at Mandy Bee’s house and we went to pick them up, but they were not wanting to leave as they were in the middle of dinner/playing. Because of this, your daddy and I went to some random Mexican restaurant in way North Scottsdale. An area that we never go out to. I was all giddy from our pow wow. We sat down at your table. Our waitress came over and asked what we wanted to drink. She was wearing a purple bracelet. I just looked at her and said, “What’s your purple bracelet for?” She shyly said, “Cancer.” I just smiled and said, “Oh, for who?” She then said, “For some little boy, named Ronan.” I held up my hand and waved. “Hi. I’m Ronan’s mom.” She looked shocked. She told me that some of the waitresses wear your bracelets. I told her thank you. That’s when I went off on your daddy. “OMG. Do you see? There are NO coincidences in life. We are at some random place, we’ve never been… we just had this great teamwork of a day…. this is a sign from Ronan that we are doing the right thing. This is what we are meant to do for him. And on all days, this all happens on your birthday. It’s Ronan’s birthday gift to you today. I have no doubt in my mind, we are doing this.” I told your daddy to leave her a good tip and I also left her a bunch more bracelets and Ro cards. We are changing the world. This is not just a cancer story, Ro. It’s our never-ending love story. Our love story that is going to change the world.
We ended the day by picking up your brothers. They had the best time spending the afternoon/evening with our Mandy Bee. Thanks, Bee. They were tired when we got home but they were excited to give your daddy his present and card. It was a nice way to end our day. I signed your daddy’s card from you as well. I will always do that, for you. I also signed his card. I didn’t say much. I simply told him, “I’m lucky to have you.” Because I am. I know this. Your daddy is the glue that is holding us all together. I am so very thankful for that. It was a hard birthday for him, not having you here. That was evident in his face all night long. He loves you so much.
Today, is Friday. Today, is busy. Today, I can get through. I’ve got so much to live for and so much to do, all in the name of you. Today, there is no stopping me. I’m on a mission. I am doing this. In my mind, it’s already done.
I love you. I miss you. I hope you are safe. Have a good day, baby doll.
Get updated on some new things this month. Watch my 10 days of fake training for my marathon, June 3rd in San Diego. I have not trained at all, but I still think I can do this! Meet our intern, Rissy, who we are head over heels in LOVE with! We have a new artist of the month and it had to be Taylor, for obvious reasons. We also have a new lovie of the month, Alexandria, who just turned her entire high school into a fundraiser for Ro! Lots of GREAT things happening, peeps! Thanks for sticking with us. GO BIG OR GO HOME!!!! And F U Cancer!!!
Thank you. For what you did. I know this is all because of Ronan. Because you will never forget the blue eyes of the most beautiful little boy, who was mine, and who will forever be yours as well. You are helping to keep him alive in all that you choose to do, say, and take a stance on in life. You are helping to give these innocent kids a chance and a voice so that the face of this disease, will change. You are pure gold.
Thank you for bringing awareness to this awful world of Neuroblastoma. You are the light that shines through the dark, dark, clouds. We need awareness so badly and what you have just done, will help us to move these mountains, so much faster. My heart, will forever be yours.