Tag: MISS Foundation

Sometimes even I need a reality check

Ronan. I woke up yesterday morning with a Halloween grief hangover. I felt like I had been hit by a bus. I was determined to not stay in bed all day, like every aching bone in my body was begging me to do. I had to talk myself out of doing this and it took a lot but I wasn’t about to give into my grief and let it chain me to my bed all day long. I got ready for the day instead and headed over to my office. Thank god for that place. It is helping me so much. I pounded out a few things that I needed to get done. I had an interview at 1:00 that I so did not feel up for, but the person interviewing me was coming to my office so I told myself just to stick it out and I would go home and crawl into bed, after it was over. Little did I know, that this 22-year-old kid was about to make my day.

I never know what to expect when doing these interviews. They can be emotionally draining most of the time and quite honestly, I don’t love doing them. I would rather just hide behind my computer all day wearing my spirit hood, glasses and pajamas. But I also know that I am very lucky to have the opportunity to get your story out there in a way that will raise awareness for childhood cancer. I know this comes with the territory and is a part of me being an advocate for you and all of these other kids who have been dealt this shitty hand in life. They don’t have a voice. I do. I will use it and scream for you and them as loudly as I can. I will use this platform to do great things and hopefully help change this devastating world. As soon as Tyler walked into the room, I knew I was going to love him. He was so nervous and I could totally tell. He sat down and told me a little about himself and why this story struck such a nerve with him. He had me at hello and the fact that he was wearing a skull shirt, made my day. “Tyler! You have on a skull shirt, I have on a skull necklace! You could be my 22-year-old soul mate!” I tried to put him at ease as much as I could. He had his notebook full of questions and it was so refreshing to see that he had really done his research on my blog and all things you. That made me like him right away and automatically made me respect him right from the get go. It was so refreshing to see he was serious about us, our story, and helping to get our message out there. Our interview went on for about 2 hours. We had a good little thing going back and forth. I was so impressed by him at one point I thought, “I hope Liam and Quinn turn out to be like this kid. His parents must be so proud of who he is and all he stands for.” I told him being interviewed by him was one of the greatest interviews I’ve done yet and I truly meant it. I know he is going to do a great job on our story and I can’t wait to see what he does with it. He left me by saying, “Please don’t go home and throw up because this was so hard.” I told him that in no way did I feel sick and the interview was actually really great. I gave him a big hug and told him thank you. I felt like I had just spent the afternoon with my little brother. It was a great afternoon for once and I left feeling totally inspired by the youth of today. Mark my words, that young soul will help change this world in one way or another.

I left shortly after Tyler left. I ran home to do some things. There was a support group going on at the MISS foundation and Dr. JoRo was leading it. As much as I hate support groups, because to me they are so painfully hard, I dragged my butt down there to attend. I’ve only been to one before and it was so awful that I refused to go back. I sucked it up last night for a couple of different reasons and I have desperately been missing Dr. Jo, so I knew that seeing her would be great. My favorite mom’s were there. The mom’s of a baby boy named Noah. I was so happy to see them and was able to spend some time with them. I adore everything about those two except for the fact that they have a dead child, just like me. I got settled into group and we all went around and told a little bit about ourselves and our kids. I felt vulnerable, sad, and scared sitting in that group. I know everyone in the room is there for the same reason so it should feel safe to me, but to me it just feels like the saddest place on earth. Every single person in that room, has a dead child. It is always a wake up call to me, as if I need anymore wake up calls in life. But it honesty is like a slap in the face. I sat and listened to the horrific stories of everyone else. The drowning, the car accidents, the ecstasy story, the stillbirths, the mental illness, the sudden death at school, etc….. Newsflash! Cancer is not the only way kids die. I know this. It made me want to run home and lock Liam and Quinn up forever and beg them to never touch a drug in their life, not drive a car, or leave the house. You think you are immune to your kids dying? You think you are too perfect of a family, for this to happen to? You are not. Nobody is. I think the sooner we as a world start to realize this, maybe we will take less things for granted. Maybe we will enjoy every single split second with our kids because nobody can say when our time is up. Maybe parents will start understanding that being a parent is a privilege, not a right. No matter how much money you have or how protected you think you are. Sitting in that room last night is the most humbling place in the world. Even I myself, need a reality check once in a while to be reminded that I am not the only one hurting this badly. That is why the MISS Foundation is such an important place in the world. Without it I can guarantee you about half of the parents in that room tonight, would have ended their lives. I know I would have. Dr. Jo is part of the reason that I am still here. If you don’t know about the MISS Foundation, please check it out. They have such little funding and need it so badly. It is such a safe haven for all of us parents going through the worst thing possible and Dr. Jo is my absolute idol in life. She is one of the rarest most beautiful souls that I have ever known. http://www.missfoundation.org/

After group ended, Dr. Jo came up to check on me. She knew I was a wreck. She looked at me and said, “How was that for you?” I said, “So Poppy is going to be born dead, right?” I was so shaken up by the still birthing stories. She just looked at me with that wise motherly look in her eyes. “I knew you were going to say that. I know that was hard for you to listen to. Poppy is going to be fine. She has Ronan looking out for her.” I keep telling myself I have to trust in that. I know that Ro. I tell myself that about 100 times a day. I left group beat and exhausted. I came home and crashed out until early morning. I woke up, showered and went to wake up your brothers. Liam was burning up. I put him in a luke warm shower and told Quinn to get ready for school. I had a lot to do today, but canceled it so I could stay home and take care of Liam. He was so sweet and so thankful for everything. I ended up taking him to the doctor to rule out strep because that has been going around. His strep test came back negative and his fever is almost gone. He does look miserable though, so he spent the day resting while I spent the day being domestic around the house. I hate being at home doing all the same things I used to do. Today, I forced myself to cook all day long so Quinn would have a nice meal to come home to after school. Cooking used to be our thing and now it’s just so hard for me to cook without you. Doing anything around the house is hard for me now. I don’t have your clothes to wash, your breakfast to cook, your dishes to do. Not having all of those things to do for you makes doing them sting so badly. Today, I took the day, set myself aside and did things that I knew your brothers would be thankful for. I was right. Quinn must have told me about 10 times tonight, “Thanks for the homemade soup, Mom. It was really good.” This broke my heart in a million pieces. It made me realize that I need to work a little harder around here doing the things I used to do, every single night, such as cooking really great homemade meals. I think the every night thing might be pushing it, but a few nights a week, can be a start. You know why cooking is the most hard for me? It’s because dinner time, with a homemade cooked meal means we have to sit around the dinner table without you. I don’t think that will ever become an easy thing. I often find myself getting anxious and sick to my stomach. Quinn sits in your chair now. I’m just glad someone is sitting there, I guess. He is a good little seat filler.

Your brothers have their last basketball game of the league tomorrow. I hope Liam is feeling well enough to play in it. I’ve made him rest all day and I fed him a good dinner tonight. Hopefully, I can get him to go to bed early to get the rest that he needs. I’m tired too. An early bedtime sounds like a good idea for both of us. G’nite Ro baby. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

Grief, Pregnancy and Pies

 

Ronan. I think I told you that I tried to “prep,” with Dr. JoRo about this whole getting pregnant thing. We spent hours upon hours talking about it. Nothing could have prepared me for what it is like to be pregnant, after losing you. I am a natural born mother. I am a good mother. The fact that I still don’t really feel all giddy and excited about this baby, scares me a little bit. I still think this baby is going to die, so therefore I am trying not to get too attached to it yet. I guess I wrote a lot about having another baby when you were still here. I know we talked about it, but I don’t remember all the things you told me. A lot of my blog readers have been posting that you said you wanted a baby sister. I don’t remember that, but apparently I wrote it so it must be true. My foggy grief brain still makes a lot of my memories of you, hard to remember. Whatever this baby is, it will be loved. I know I love it, but I also know it will never take the place of you. It will never fill the empty space in my heart that feels like a gaping hole. I can’t even begin to think about a nursery. All I know is we have 3 bedrooms in our house and yours will not be turned into a nursery. I’m not sure what we will do. There is no way I can even fathom the thought of taking down your things and packing them away. I told your daddy he needs to build a new room for this baby because it’s not having yours. I cannot part with your toys, clothes, stuffed animals, books, blankets, pictures on the walls. I cannot take the things down from your room, only to fill them with something new. I cannot get rid of your bed and the Master Yoda that hangs above it. I won’t do it.

I am still pretty sick. The thought of any type of food, makes me nauseous, except pies. What in the hell is that all about? That’s all I want to eat. Peach Pie, Apple Pie, Cherry Pie… yes please. Any type of meat makes me throw up. Any type of cooking smell, makes my stomach turn. I’ve been living off of pie. So weird, but I’ll take it. You know in my obsessive exercising eating nothing world before I was pregnant, I would have never touched a pie. Bring on the pies now. I’ll enjoy them while I can:) I was productive yesterday. Of course this left me wiped out so I had to come home and take a bloody nap. I was going through some emails. I had been going back and forth with your Sparkly on some things. He had read my last blog post about how barbaric the cancer world is. He told me he thought I was being a little harsh. This led to me sending him an email back saying in no way, shape or form, was I too harsh. This led to him calling my phone. We had a little debate that  I took a stance on and refused to back down. You know how he loves to play devils advocate with me. Not because he thinks I am wrong, but I think he likes to provoke me into thinking long and hard about things from every angle, before I take such a strong stance. This is one of the things that I love most about him. The way he makes me exam everything that comes my way, with a magnifying glass. This led to me bawling on the phone. “You didn’t see everything he went through, but you saw more than most people. I won’t tell you everything they did to him, because I feel like I have to protect you. I know how much your heart is broken. Why would I want to break it anymore? Yes, it was barbaric. Yes, it is wrong. These are kids. They deserve more compassionate treatments. I lived in this world. I saw things that you don’t even know about. Someday, I will tell you.” I sobbed into the phone. “Darling. It’s o.k. You are right. You are so right. You don’t have anything to prove to me, o.k. He deserved better. You know you have my utmost respect, always. Come on, settle down. When do you leave for New York? Tell me about your trip.” I wiped away my tears and appreciated the way he tried to change the subject. We talked about New York for a bit. He always knows how to cheer me up, but I was still left a little shaken. I still feel like I have post traumatic stress syndrome over the things we went through. I will not ever forget the way you were treated like a lab rat by supposedly one of the best doctors in the world. What a fucking joke.

I have tried to be as productive as possible. I had a long board meeting last night. As always, it was good. I love our little unconventional board. I love the way we gather around our kitchen table, somebody always brings food, and we get down to business. There is a lot of business to attend to, but that never gets in the way of the love and laughter that fills our house while those girls are here. That means everything to me. We have so much going on which we are all so thankful for. We also know some changes are going to have to come, in order to start raising the serious about of money, that we want to raise. Let the strategizing, begin…

Sooooooo… New York!!! I leave soon. I have some serious business to attend to! I’m so excited. Stacy is coming with me. She needs a break and this trip is just what the doctor ordered. She will be great to have along with me to help with the business things that we are dealing with. We are also going to meet up with my friend, Scott Kennedy, from Solving Kids’ Cancer, another really great organization that is based out of New York. We will spend some time with our Fairy RoMo which is the thing I am most excited about. NYC with our Fairy RoMo is my paradise. It will be a trip packed with a lot of business, but a lot of fun as well. All fueled by everything Ronan. My favorite kind of trip. The only one’s I feel comfortable taking. As long as you are the reason I am going, to keep things moving forward with your foundation, your memory, and your spirit… I know great things will come from this trip.

A lot of you little blog readers have asked why I am calling this baby Poppy for now. It’s because when I first found out I was pregnant, it was the size of a poppy seed. I thought that name sounded cute, so that is why. It won’t be the real name for the baby. We have had those picked out for a long time. Our girl name was picked out even before Liam and Quinn were born. We think we have our boy name too. Ronan will be a part of both of their names, regardless of the sex of the baby. That is important to our family. We have all agreed on that. Anything else I need to address tonight?? Your questions are sweet. I love reading all of your comments. Thanks for writing them.

I think this is all for tonight, Ronan. I miss you so much. I watched your daddy come home from work today. I was laying in bed.(still sick and maybe a little depressed) He put his keys on our dresser, just like he always does, right in front of your urn. Watching him do this, I felt like I was sucker punched. His keys, our son, on our dresser. It is just all so wrong. You should not be sitting there. You should have been causing trouble somewhere like I know you would be doing, if you were here. I’m sorry for everything. I miss you, I love you, I hope you are safe.

xoxo

All good things are wild and free, right Ro???

All the things I wish I’d known…

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.

xoxo

I feel, therefore I am

 

Ronan. This is just how things work now. When things come to me, they just come. For almost a month now, I’ve been hiking my butt off. Worrying about your birthday and what it is I wanted to do. Pressuring myself to figure things out. Some days, ideas came. Other days nothing came at all. I tried not to get too frustrated with myself. Nothing felt good enough. Nothing felt right. Nothing could hold a candle to making this day as beautiful as it should be. As beautiful as you are. I stopped thinking so much. I felt instead. The Phoenix Children’s Hospital plan came together slowly. But I knew there had to be something else. I knew your birthday had to be something that everyone could share. Your love can do so much good. Your love will do so much good. Your love will change this broken world. I know this.

I sat at Dr. JoRo’s office for most of the day. She was not there but let me use her office so I could work without having to be at home. I cannot work from home. It is too painfully quiet. I sat in her office and worked away. It felt cozy and safe. I turned on my computer screen and my hands starting writing away. The words for your Ronan’s Day of Love flyer flew of nowhere. I texted your little LoRo. I asked her if I gave her the verbiage, if she could put together something for me to help spread the word about the day I was wanting to create. She said of course. She was so happy to do it. I was so thankful to have her to ask. It was done within minutes. It is darling. It is sweet. It is pure and came from my heart. It came of a place of feelings not thoughts. I didn’t have to think when I wrote out my words. I often don’t. I don’t usually think when I write on here. I feel. Your day of love came the exact same way. By feeling and that’s it. I felt alright. I felt so much that I spent much of the day sobbing on the floor of Dr. JoRo’s office. I spent much of the day, sobbing over emails, text messages, and writing in my journal. I sobbed over thinking about how wrong everything is, but how right so many things are becoming. It seems everyday I am flooded by words from people about how you have changed them for the better. It seems as if everyday, someone is out in the world, doing good because of you. It is bittersweet to see all the wonderful ways you are still here. I only want you here but as we said before, that simply cannot happen. I will take you in the only way I can now. By feeling you when I do. By watching you change things for the better. By trying harder at everything I do when I really don’t want to do anything at all. By trying very hard, to fix myself because I know that is what you would want. I know you want me to be happy. I know you don’t want me to hurt this badly. I remember your last words to me. You yelled at me. I was crying. You said, “Don’t be sad!!!!!!” I hear your squeaky little voice telling me this. It is so hard, not to be sad, without you. Do you know, every time I laugh, I feel you. Every time I smile, I feel you. My laughs and my smiles are not my own anymore. They belong to you. They will always belong to you.

I’m tired tonight. But I wanted to stay up until midnight because it is someone’s birthday. This someone’s birthday that has been one of the most unexpected gifts to come out of all of this. This someone that I often sit back and think to myself, “If Ronan had not gotten sick, I may have never met this person. I cannot imagine my life without her. I am so lucky.” I call myself lucky when thinking of her. I call myself lucky because I know it was you, that put her in my life just at a time when I thought I was drowning the most. You threw me a life raft and it was her. She likes to be undercover. She likes to be behind the scenes. So all I am saying is a big HAPPY FUCKING BIRTHDAY, to you know who you are. Margaritas to come later over mucho chips and salsa. I heart you. And your little dragon too.

G’nite. Sweet dreams. I miss you so very much. I love you. I hope you are safe.

xoxo

 

 

Life’s not about waiting for the storm to pass…It’s about learning to dance in the rain while jumping in some mother fucking mud puddles.

Ronan. About 3 weeks ago, Dr. JoRo said to me, “Hey, do you want to hike Mt. Wilson with me, on April 26th?” I didn’t even look at my calendar. I just gave her an, “Absolutely.” I didn’t even know what Mt. Wilson was, except for it was in Sedona and I knew it would be an adventure. I could not have imagined in my wildest dreams, the adventure it would turn out to be. I woke up this morning at 4:30 a.m. I quietly threw together my things and headed out the door for the drive up to Sedona. A drive that I have come to love so much. It started to rain on my drive up. Dr. Jo said it might rain today. “That would be the best!” I said to her. I arrived to Jo’s around 7 a.m. She was all ready to go and we called her neighbors to see if they were ready to meet us. They were, so we all piled in their truck and headed out for our little hike. I had on shorts, a tank top, my purple coat and your backpack full of water and your GiGi. This is Arizona, it’s April, and it’s been hot. We don’t really get rain in April, so my outfit seemed appropriate.

We quickly arrived at Mt. Wilson. At 7,122 feet, it is the highest of all the mountains in Sedona. It is breathtakingly beautiful. We started our hike and for the first 10 minutes, I was warm. I was a little bummed out that the sun was starting to peak through. I unzipped my jacket and went, “Here comes the mother fucking sun. Again.” I was really needing a break from the inferno today. Up we went. Dr. Jo climbed a tree to hang some of your bracelets on it. I started snapping some great pictures of her. She is such a little spicy monkey, like you. On her way down, snap went the branch due to it being all rotted and dead. She fell, but caught herself just before landing right on top of a cactus. We starting laughing and the first war wounds of the day, were earned. I noticed the clouds rolling in and the rain that started to trickle. A smile spread across my face. We continued on. Within minutes, the sky had turned and we were getting rained on like I had never seen rain before on an April Arizona day. I was snapping pictures, left and right. We both kept stopping to take in the views. Soon the thunder and lighting started up. “It’s Ronan,” I said. “He’s mad.” Pebbles started hitting us in the face. “HOLY HAIL!” I cried out. “I told you he was mad! Ouch!” It was hailing on us, hitting us both in the face, and we were laughing. The wind started howling and whipping around us. We still had a couple of hours to go up the mountain. The rain did not let up. At all. We were sopping wet from head to toe, but we still continued on, determined to make it to the top.

I felt like we were transformed to a bunch of different worlds today. I said to Jo, “I feel like we are walking to the end of the earth.” She agreed. I am quite certain, that it was you today, Ronan, whom was in charge of this weather. You know how the dreary, rainy weather is one of my favorite things in the world. You know how much I miss it. You know how much I miss you. I think this was your way of crying for me and letting me cry for you. With the millions of tears that poured down on me today. The millions of tears that will never add up to all the tears that I’ve cried since you’ve been gone. Today, the weather was your tears and my tears, combined. Together, the sky and the heavens above, wept for us.

Dr. JoRo summed up our hike like this:

Ecopsychology. Bear. Gigantic falling trees. Hail. Raining four straight hours. 40mph wind. Sloshy mud. Lightning. Tree climbing. 17 miles, and 7000+ feet. 35 degrees. Muddy falls. Drenched head to toe. Never done anything quite like this. It was good to do for a very special little boy who is loved and MISSed. Pilgrimages of remembrance don’t get much better than this. — with Maya Thompson.

It was all of those things and more. So much more than I could have ever imagined. Once we got to the top, it was so cold that we could see our breath. We were not prepared with any water proof clothes, our lips were blue, and pretty much every body part was numb. I could not feel my legs or hands. I think I may have thought to myself, “There is no way we are going to make it down this mountain. They are going to have to send a search party.” We stayed at the top but not for long. Between the rain that was coming down and the wind, it was almost unbearable. I started to lead the way down the mountain. I stayed with Dr. Jo and her neighbors for a bit but I needed to run. I felt myself getting angry and sad and needed to take out my energy on something. Soon, I started running and didn’t look back. I ran as fast as my feet would carry me. I jumped over broken down tree stumps, over boulders, through sticker bushes, slipped all over the place in the red mud that felt like quicksand on my feet. It just continued to pour down rain and did not let up at all. At one point, I had to pee so badly, but it was hailing again. “Oh fuck it,” I said. Down came the shorts and my bare ass was pelted by the hail coming down. I busted out laughing. Today may have been one of the craziest things I’ve ever done in my life, besides skydiving. Bare ass in the air, covered in mud, drenched from head to toe… so totally badass. I felt like I was on some adventure extreme sports show, roughing it in nature. I would have totally beaten all the other contestants today, Ronan…if it had been a competition. I would have beaten them all, done anything and everything, to get you back. That’s how I felt going up that mountain today. Do not stop. Keep going. You are not cold. You are not in pain. You are alive. So you don’t get to have any excuses. You don’t get to wuss out. You don’t get to give up or turn around. You can do this. Ronan would give anything to be here, living life, growing up, and doing these things. He doesn’t get to, so you have to do them, for him. I continued sprinting. I had a baggie of your ashes with me. I haven’t ever spread them out anywhere before, besides the lockets that I wear and the one I gave to Fernanda. I carry your ashes with me, a lot of places, but never leave them anywhere. I wasn’t sure if I was going to or not today. It just didn’t feel right. At one point, I was running so hard and so fast that my legs felt as if they were on fire. I turned a corner and it was out of nowhere, the most beautiful field of the brightest yellow wildflowers appeared. They were so bright, that it was almost blinding. I stopped dead in my tracks. Yellow. Bright yellow. Scatter them here, on top of these flowers. I did. I know you know why. It was the perfect spot. I kissed the top of the flowers all covered with some of your ashes. Just as I did this, the rain started pouring down so hard that I could hardly see. I started to cry. I told you how sorry I was. How much I love you. But mostly how sorry I was. How sorry I will be for the rest of my life. You should be here. I should not. I’ll never understand why this was you and not me. You did not deserve any of this, Ronan. I would have given anything, for this to be have been me. Anything and everything. Fate is cruel. Fate is not kind. Fate is a fucking asshole. Especially when it comes in the form of sweet, innocent babes getting cancer. And then dying from it. Fate can go and get fucked.

I ran as fast as I could down the mountain. I had painted mud war stripes on my face. I live in a war, everyday of my life. They were necessary to wear today. They made me giggle. I purposely jumped in every single huge mud puddle that came my way. I did this for all of you, of course. I laughed out loud. I pictured you watching me and what a sight I’ll bet it was. My purple jacket, against the red contrast of the red rocks, flying down Mt. Wilson today in the pouring rain, laughing, crying, screaming… but most of all feeling something other than the fucking pain I feel 24 hours a day. Feeling something other than feeling dead. Today, I felt alive and it felt alright. And I don’t need any kind of bullshit medication to make me feel this way, Ronan. You know what I need? Exactly what I’ve been doing. Nature. Exercise. Mindfulness. Pain. Honesty. Love. I will survive this, thanks to those things and nothing else. Nothing else that comes in the form of a pill anyway. A pill for grief is absurd. A pill for grief is madness. A pill for grief will only create a bigger problem. There is a simple solution, really. It’s called how about feeling, what you feel, when you feel it, and facing it head on. That’s what a brave person would do. That is what a strong person would do. Those are the two things, you kept saying over and over to me in my head today. I heard you about 50 different times. “Mama. You have to be brave and strong, because I was brave and strong.” I know, Ronan. I know. I hear this a lot from you. I’m listening.

So, today. Today was one of the best days of my life that I have had, since losing you. I learned that I am capable of so much, Ronan. I can do all of this and I know this due to having days like today, which don’t happen very often. I went back to Jo’s after our hike. We showered, ate, played some ridiculous card game, laughed so hard that at one point, her son, Josh, fell off of a chair. I would not be doing alright without her, Ronan. She is such a huge factor in this process for me. She has this grief thing figured out and the funny thing is, it really has nothing to do with science. It has nothing to do with medication. It has everything to do with love, compassion, empathy, pain, laughter, passion, and just letting one find their own way. Whatever that may be.  Without the judgements.

It’s super late. I’m so tired from today. No Ambien for about a week now. Good girl. I hate that shit. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

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A painfully gracefully clumsily beautiful existence

Ronan. I had a rough sleep last night. I think there was a lot of tossing/turning/punching pillows involved. It was 1:45 a.m. when I pretty much said FUCKTHISSHIT and popped an Ambien. Hate it. But sometimes the silence of nothingness is needed. More so than not lately. Nights have been more brutal than they normally are lately. Nights are when the cries from you to me and me to you, scream the loudest. Nights are never quiet.

I got up today, running on the little sleep I had gotten, but I had a lot to do. Too much to do so I went into tunnel vision to get everything done. Foundation things. I had a meeting at Phoenix Children’s Hospital that I needed to prep for too. Prepping came with basically giving myself a pep talk and telling myself how I would be brave today and talk about you, without sobbing like a baby. Prepping for today came with a lot of,”You can do this. For him. He would love this.” Rita met me down at PCH. I was waiting in the lobby for her, busying myself with doing things like cleaning out my purse. Busying myself with a lot of things to distract myself from crying. I don’t have a problem with being at PCH. I’m down there a lot still. I had a problem with the reason I was down there today. I didn’t want to be there, without you, asking for permission to do something for your birthday, and you are not even here to celebrate it. I wanted to be down there, with you holding my hand, doing something for your birthday and celebrating the fact that you were here and we together, wanting to do something nice at PCH because we were so lucky to still have you. I fought back my tears today and bravely did this without you. I sat in a conference room with Rita and clumsily/gracefully talked about your upcoming birthday and what it is, we would like to do, to honor you. I am used to hearing the word no a lot now. I am used to getting met by skeptical glances and it usually involves a… “Well if you want to do this, you have to check off this box and this box and this box, to have it done.” I am used to having to work/fight for everything in life. Today, none of that existed. I was met with a big fat, “We love this idea! We love everything about it. We will do whatever it is, you like. How can we help/what can we do/how would you like to see this idea, happen all the time in Ronan’s honor!” I was quite simply shocked. I think Rita almost fell over in her chair. This was not what either of us, was expecting. We left there stunned but smiling. We went for tacos afterwords and talked where we talked about your birthday and how we are going to execute the ideas that we have. We are going to make it a very special day for a lot of kids. I know it would make you smile and so happy.

After I left Rita, I drove to your brothers baseball game. I was feeling alright. I arrived to the game and just as I was sitting there, thinking about an email I was supposed to send today, in regards to an event I am trying to pull off for you in September, a little text message popped up on my phone. A little text message from the person I was going to email, but did not. I read it, sat with it, and the tears started pouring. I don’t want to go into details about what the text message said as it’s not important. I’ll sum it up with a little Taylor Swift lyric instead…one of my favorites. “Don’t you worry your pretty little mind, people throw rocks at things that shine.” I was crying for about 10 different reasons during that moment. 1) Because baseball games are hard in general. 2) Because I miss you. 3) Because this little text messaging person, blows my mind 4) Because I am so thankful that truly good people in the world, like her, exist 5) Because the stars are aligning, right before my very eyes 6) Because just when I start to doubt myself, this person always seems to know it and reminds me that she believes in me and you 7) Because I am so about letting things just come about/not push them and this was a huge reminder/sign to me to continue to do things, this way. There are a few more reasons for my tears, but I don’t want to go into them. Mostly it was just a huge fat thank you, Ronan. For reminding me that you are still here, working away during the times when I feel the most defeated. Or tired. I told your Sparkly eyes that I was just freaking tired of everything. I was quickly met with a, “So what? That’s bullshit. You’re tired? That means nothing.” He is one of the few people who I allow to slap me in the face and I don’t become defensive or feel offended. I am able to step back, assess the situation and say, “You are right. I am acting like an asshole and I need to knock this shit off.” I am learning to let myself take little breaks here and there, but I will never give up on you. I will work as hard as I can, to make some things in this mad world, right.

You know what else you are doing for me? Or should I say, this grief is doing for me? It’s making my heart bigger than ever. I did not know that was even possible, but it is. There are things now that I just cannot look away from. I want to save/help everybody. It’s helping others, that is saving me. Dr. JoRo told me this after a few times of seeing her. She talked about how my heart, would eventually start to turn outward again. I remember being in a fog, listening to her words, but not really understanding what she was saying. My heart would turn outward and grow bigger? Not possible. It is black, broken and shattered into a million pieces. I am starting to understand what she has told me, from the beginning. I’ve always believed her, but I think until now, I wasn’t truly ready to hear what it is, she was telling me. She is so freaking humble. I talked to her today. She is still on her trip and just found out she is getting some huge/really big deal award for being what I think should be called, “The Most Amazing Woman Alive on the Planet Award.” I listened to her talk about it like it was not really a big deal, even though it is. She would never come out and say that because that is just how she rolls. I tried to tell her it was a big deal, that she deserves this for everything she is doing. I was met with a, “Maya. That’s the thing. I’m not really doing anything except just being with you. Just holding your hand as you do this. All I am doing is sitting with you while you feel this, while you go through this, while you find your way.” I wiped the tears off of my cheeks. I told her that what she was doing, was walking through this with me in a way that nobody had done before. By truly listening. By speaking for me when I cannot, even if it’s not saying anything at all. By NEVER judging. By NEVER pushing. By NEVER expecting. By NEVER telling me I am doing this wrong. By NEVER lessening my pain. By never trying to numb my pain by shoving 10 different pills down my throat. By never saying, “Oh, I lost a child too, so I TOTALLY get it. By never telling me it’s time to get over this/move on. By never comparing her pain to mine. By NEVER using the words, “Well at least you have these things/people to get you through this. By never using the words, “You should be grateful for the things you do have.” By never telling me this gets easier. By never giving me false hope. By being brutally honest about how fucking awful this all is and she cannot fix it. She cannot fix it, but she will forever be here to watch me as I do, as I am the only one that can. And finally, by believing and me and trusting me, even when I do not believe or trust in myself. She always does. I know she always will too. She is one of my biggest reasons for continuing to fight as hard as I do. When I grow up, I want to be just like her;) She is beyond inspiring, Ronan. She reminds me a lot of you. She reminds me a lot of me, too. So much some days that I can see my pain, in her eyes. But the thing with her is it never hurts to look at her eyes, full of all of my pain. When I look into her eyes, I see a quiet strength that makes me feel the most at ease. It’s like I can breathe for a bit.

Guess what I did tonight? I did not get to hike today due to my busy day of getting shit done. I was quietly panicking in my head about it. I took Liam out tonight to grab a bag of ice for your daddy. It was dark. It was late. I drove the two of us, to our mountain. “Liam. I didn’t get to hike today, buddy. You want to go with me really fast?” I was met with an, “Ok mom. But I don’t have shoes.” I quickly told him no problem, that we could just go barefoot. He was so excited. “Good thing I have tough feet, mom.” Tears sprung to my eyes. “Yeah buddy. Good thing. I do too, so we will be alright.” We hiked, barefoot, in the dark together. He talked the entire time. We didn’t go to the top but that was not the point. We went as far as we could with bare feet/no flashlight like we didn’t have a care in the world. We bonded. We laughed. We missed you. It was a very sweet hike with a very sweet boy. I bawled like a baby over it and the fact that we were simply doing that crazy thing, because you are dead. If you were here, I would have never been on a mountain, holding Liam’s hand with bare feet and a broken heart. But I was. And I am. And I will continue to be for the rest of my life. This is just the way it is now. This is just the way it will always be. This grief/pain will never leave. I can’t have you anymore so this is what I am left with. A beautifully, painful life. I am noticing that the amount of beauty that I see in the world is endless but so is the amount of pain. They both seem to go hand in hand, everywhere I look. They are never without each other. It is as if they are best friends/worst enemies. You cannot have one, without the other. I wonder if other people notice this or if it is just a bereaved parent thing. I think my friend Rita sees it all the time, as well. Maybe this is one of the reasons I like her so much. That and she is funny as a mo fo. I cannot contain laugher/her snarky ways when I am around her, kill me. Like in an I almost pee my pants kind of way. Laughter truly is the best medicine. I need a lot of it. She is good at providing it. Plus, sometimes she makes me feel like I am being funny and making her laugh, too. So sometimes I feel like it’s just not a one way street;) YAY ME! I can still be kind of funny, when it comes out naturally. I only do this with the people I feel most comfortable around. It’s a weird introvert characteristic of mine.

Alright babydoll. Turing in for the night. Ambien I hate you but I have to sleep is here. G’nite baby doll. G’nite sweet friends. I miss you, Ro. I hope you are safe. I love you.

xoxo

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There’s Beauty in the Breakdown

Ronan. Did I say that I was in solitude last post? I think I remember something like that. Grrrr…not happening. Turns out, if I really want to go into deep hiding, I’m going to have to abort cancer fighting mission. And that’s not happening. I think I wrote to you last on Monday. Your 11 months fucking shitty asshole day. The week has flown by and I’m not even sure what I’ve done. I’ve hiked every single day, since I started my Inferno Hiking Challenge. It’s kind of sort of, AWESOME. I guess that’s where I’ve done all of my quiet time/solitude. Turns out, I really may need to go to India to a Buddhist Meditation retreat to get some serious solitude time. I don’t have time for that though, so the mountain will have to do. I’ve been thinking about your birthday, a lot. More so then your death day. I have a few ideas about what we will do. I think I remember thinking on Tuesday, as I was flying down the mountain, that Tuesday was an o.k. day. It was the first day in a long time that my head didn’t feel foggy or weighed down. It was the first day in a long time that I thought to myself, alright… this is easy. You can totally do all of this. This meaning the 1 billion ideas I have roaming around my head in regards to you/childhood cancer/bigger picture/cancer is an asshole plan. The hiking and being outside with nature seems to really work for me. That and Dr. JoRo go hand in hand with saving my life. I’ve been doing alright without her here. The best that I can do. I repeat a lot of her words in my head and try to make myself be mindful of every single thing that I am feeling. She’s been checking in on me a lot and I actually went down to the MISS office on Tuesday where I sat in her office to get some shit done. Thanks, Yasaman and Kathy for letting me crash the place for a bit. I was able to be productive for a few hours and it felt nice to get some things checked off of my never-ending list.

I’ve been spending a lot of time with your brothers. They had a friend over this week to play. It was nice for all of us. I miss doing things like that with them. I miss the days when play dates ruled our world and cancer did not exist. I took them swimming and I allowed myself to get lost in a book for a bit. I never read anymore. I’m starting to do it a little more of it. I have to try for my mental well-being… I’ve been a reader since before I could freaking read. It’s always been a part of me. For as hard as it is for me now because my concentration is shot, I really want it back in my life. Your daddy asked me a couple of weeks ago if I ever thought I would start to read again. He said to me, “Remember when you used to read a book, in a day?” Yeah, I remember. I remember a lot of the things I used to love to do that I just don’t do anymore. The self-torture is never-ending around here. I don’t like to do things that make me feel good. It does not feel good to me to feel good anymore. It just comes with a ton of guilt/demons/you should not feel happy about anything because you are gone. Even the one thing that makes me feel o.k. like exercising, comes with a heavy price tag. Don’t think I’m not beating myself up on that mountain to make myself physically feel the pain because I am. I am constantly telling myself if it doesn’t hurt or I’m not puking, I’m not trying hard enough. That nothing is good enough. I couldn’t save you, so why the fuck should I save myself? I know why. UGH. For as much as I don’t want to, I do know why. I see the shreds of happiness you leave around. I feel like I am holding on to them as tightly as I can. I’m trying my hardest not to let go, Ro. I am trying.

I had a board meeting last night. It lasted almost 5 hours. It was beautiful. It was painful. They always are. Nothing beautiful in this world, comes without pain. It’s just they way life is. But once again, sitting in that room with the loveliest little souls alive, I felt blessed. And thankful. They all love you so deeply and so much, that it sometimes leaves me speechless. We talked about a lot of foundation things. We talked about your birthday and death day. At one point, I had no choice but to put my head down on the table and sob. I was trying my best to be strong, but when it comes to talking about your one year shit, there is no being strong. There is no need to be. Especially in a room full of them. I cried. I told them all how nothing seems good enough. I told them all how I have been racking my brain, just waiting for something to come to me, to honor you. But it’s not happening. This is what I have for May, Ronan. The day you died. Your birthday. Mother’s Day. The day we had your funeral. Your Daddy’s Birthday. I mean, really world. Could you throw one more thing in there for me to deal with. May is awful. May is horrific. I wish I could bypass that month all together. I know I have to get a plain in place, otherwise I’m going to be fucked. If I don’t have a plan, May will spiral out of control. Nobody can save me from May. It’s coming and there is nothing I can do about it except try to take the days that I know are going to be the hardest, and try to deal with them, head on. What choice do I have? I can’t bury myself or slit my wrists. I just won’t. I promised two very important people this. I’m not breaking my promise to either one of them. I love them too much.

Babydoll. This is all I can do tonight. It’s late. I’m tired. I have a busy day tomorrow. I have a busy day, but I’ll still get my ass up on that mountain, to have some time with you. I love you. I miss you. I hope you are safe. Sweet dreams.

xoxo

Dear 11 Fucking Months. I think I hate you.

Ronan. This solitude thing… it’s alright. It’s necessary. I’m doing it as much as possible. As much as I can for still being among the living, while really being dead. That’s what I feel like lately. It’s o.k. It’s part of this process for me. For as much as I’m checking out, I am still checking in when I can with the people who love me the most. With the people who I love the most too. I’ve been spending most of the days, solo. Hiking for many hours. Trying to be mindful of the way I’m feeling and not trying to distract with busy, busy things. There is a time for that. It’s not now. Right now, it’s time to check in with myself and that’s about it. Right now is not the time for the business that usually consumes me. Thinking about the past few days I know a lot of things have gone on. I woke up this morning to an empty house due to your brothers staying the night at your Mimi and Papa’s. They were going to be gone all day long which I knew was more than I could handle… you know, the whole being home alone until the evening. I woke up and thought, “Fuck. This is not going to be a good day, if you are home until 5 or 6 tonight, in this quiet, empty house. I threw some things in a bag and headed out the door. I sent Dr. Jo a text that simply said, “Coming up there for the day to go hiking.” Up there being Sedona. Why not? It sounded like the perfect thing to do instead of a sad/lonely day at home. She told me to just come to her house when I got up there and we would go hiking, together. Even better.

I arrived around 11 to the one place that now feels like one of the safest places in the world to me. A place that fills me with solace and gratitude. The comfort of Dr. JoRo’s house and that beautiful place of Sedona that she lives. I am no fool. Without her I am quite sure I would not still be here. I’m not too proud to admit that she has pretty much saved my life. In a weird way I feel like she’s been waiting for me for a long time. Or rather, we’ve been waiting for each other. I’m quite sure we were supposed to meet in this life. Just fucking sucks it had to be this way. I’m just thankful I found her when I did because if I did not, I am sure I would be in a mental ward, doped up on 20 different drugs, because don’t you know, a pill makes everything better/go away. Fucking emotionally irresponsible bullshit that medication thing is. More on that later…

Dr. JoRo grabbed her expert friend/neighbor in all things Sedona/nature/trails to take us on a little adventure. It was a good 2 hour hike where we talked but in a quiet/respectful way. It as nice as nice can possibly feel. Much better than being at home, lifeless, in bed where everything hurts so much that I think the pain alone is actually going to kill me. We returned to her house where I gave her one last hug before she leaves for her trip to NYC. So wish I were going with her. Missing our favorite big city so much. After I left Jo’s I decided I was not ready to go home yet. I drove through Sedona to go on my own hike, with my non existent map. I found myself hiking through the trees, fighting with a lot of sticker bushes/ branches, and scaling the side of some huge rock to perch myself up on a cliff where I settled into a couple of hours of reading/writing/sitting with your blanket while the hot sun poured down on my shoulders. My own therapy for the day, I guess. I left Sedona and drove way too fast with the music blaring way too loud during the entire drive back to Phoenix. I let myself get lost in the world of Pearl Jam for a while which always makes me drive faster/miss you so much more.

I came home and your brothers were still gone. I jumped in the shower and decided I would meet Rita for a dangerous night out. We went to see “The Hunger Games.” This was totally dangerous for 3 reasons. 1) I never go to movies anymore. I have a hard time sitting still. 2) We went to some totally sketchy theatre (o.k. so not really… just downtown phoenix) 3) We went to “The Hunger Games.” A movie about kids killing kids. Or kids dying. Or if you have a dead kid, you should maybe not watch this movie. I didn’t really think about this, going into it. I didn’t really think about it until there was a scene where a little girl dies and they do such a good job making you feel it that I actually felt like I was the girl in the movie, kissing your lips for one last time and crying out like a mother who just lost her child. Feeling like the mother that I am who watched you die. I know what happens. I actually know what it really feels like in real fucking life and not just by watching it on a movie screen. Rita grabbed my hand and asked if I was o.k. I nodded yes as the hot tears slid down my cheeks. She held my hand until the scene was over and then asked if I wanted to leave. I told her no, that I was alright. I lied, but I really wanted to see the ending. It was a pretty good/entertaining in a Lord of the Flies kind of way, movie. One that I’m sure I would have loved before losing you because the reality of it would have never touched me, right? Yeah right. So we all walk through life, thinking. So thankful I don’t have that problem anymore, Ro. So thankful that I get to have you dead so I no longer know that I or anyone around me is immune to death. I fucking knew that before you. I talk to Jo a lot about how I always had a feeling that you were not going to be mine, forever. How I was never worried about you learning how to count to 100, how I never pushed education stuff on you the way I did with your brothers. I tell her I was always so happy and thankful for the exact moments we lived in. Not the next day moments. Not even the future. Just the present. Just when you were mine and I was yours in that exact second of the day. It made for the best/funnest life in the world. It made for the happiest life I’ve ever felt by just being with you. JUST BEING. There were no expectations. Everything was so pure and organic and real. It was just us and we really did whatever you wanted. You wanted to wash your trucks outside, naked, in the mud? Done. You wanted to rub your little dirty muddy hands all over our windows? Done. You wanted to spray our sliding glass doors with the hose? Totally! You wanted to color on them too? Alright! You want to stab our leather couch with a pen and make big holes in it, big deal, Ro. You were leaning/exploring/pushing boundaries the way you should have been. I was never going be the one to contain you creative mind. A mind that always seemed so much wiser than even mine. You knew what you were here to do. I truly believe that. I know you are still here, baby doll. It’s just the physical part of you that I miss so much.

Ronan. Holy shitballs I think I hate Easter. Actually, I don’t think I hate Easter, I know I hate Easter. Easter without you this year, sucked balls. And not in a good way. We didn’t celebrate Easter at all this year. We celebrated Feaster instead and it was awesome, for being not awesome. We spent the weekend hanging around the house. I cooked a Brisket and and taught your brothers about all things Passover. You cannot have a proper Feaster, without a little religion. So, we talked a lot about Passover and what it means. We went to our own church on Sunday which was in Sedona, at Oak Creek Canyon. We spent Sunday hiking, getting dirty, playing in the water and your daddy even jumped off the side of a cliff. We spent Sunday doing all things that you would have loved. I tried to have the best day possible by getting lost in the world of your brothers who seemed to have a wonderful time. I’m not going to lie. It was an exhausting day, for being as relaxing and peaceful as it was. There was not a better way for us to spend the day, but it was still brutal to spend our first/last holiday with you, without you. I was glad when the day was over and I was able to lay down and fall into my Ambien induced coma. I didn’t have a choice. Sometimes I just have all I can take during the day and fighting with my sleep last night would have thrown me over the edge. I fell into a black oblivion instead.

So, today is 11 months of fuckery. I spent it alone, on a mountain and at the car wash. I found myself at the car wash today and looking back now, as I sit here writing tonight, I can actually laugh at myself and the shit that happens to me on a daily freaking basis. Case in point, victim one today, Danny’s car wash dude.

-Danny’s car wash dude- “How was your Easter, Miss?

Me- “Shitty.”

DCWD- “Really? Why?”

Me- “Because I have a dead kid. Because my son is dead.” -insert flow of snot/tears here/dripping everywhere

DCWD- uncomfortable silence, “Ummm… what? Really? Well, um…. o.k. Well, are you o.k.? Like for real? Because you don’t seem o.k.

Me- “Oh my gosh. Um, yeah, totally o.k., I’ll really be fine.”

DCWD- “O.k… do you want your floor mats washed?”

Me- “Yeah, please. Thank you so much.”

You know what else happened? For the first time today, when some other dude at Danny’s Car Wash asked me how many kids I had, I said 2! I about threw up. I went to correct my mistake, but I couldn’t get the words out of my mouth and I did not feel like explaining myself because I knew I would end up in hysteria. So, I freaked out in my head instead and just walked away, in a daze. That’s when I was approached by the other guy and that’s when the “I had a shitty Easter and I have a dead kid,” came flying out of my mouth. I am surprised I was able to drive my car after that whole incident today. I came home, threw myself in our bed, and sobbed. Then I put on my clothes and went inferno hiking in the hot, hot heat of the day. After my inferno hike, I came home, showered and picked up your brothers from school. I took them for a snack and off to the batting cages where we practiced baseball and all things fun. I didn’t know trying to have fun, would be so freaking hard Ronan. I just want to bury my head in the sand. But I continue to keep trying, for the sake of them and nothing else. Because those little boys’ deserve to have a mom who has not checked out, for as much as I want to, I just can’t. We came home and I was so tired. I helped them with their homework and after having all I could take, I found myself in my freaking bed, once again. Crying. This time, Quinn found me. He cuddled up next to me, and asked me what was wrong. I told him I just missed you. He sat with me as I cried for a few minutes (no mom guilt here at all) and I then made myself get up. We spent the rest of the evening at Uncle Jay’s house (lifesaver) swimming, eating pizza, and watching the Suns game. Thank GOD for that Uncle Jay of yours. Your daddy joined us and this shitty 11 month day is coming to an end.

I’m tired of being tired. I’m tired of being sad. I’m tired of all of this shit in this fucking crazy world. It truly is insane, Ronan. I cannot watch the news/read the paper because of all the things that I just cannot believe are going on. Some lady flushed her baby down a toilet. Facebook just bought Instagram for a Billion dollars. Everyone and their mothers are getting their own “reality” shows. Nothing out there, makes sense to me. It all makes me angry. None of it matters. It’s all “stuff,” getting in the way of real reality like kids dying and parents struggling to stay alive and survive. And wait… why are all these kids with cancer still dying and still being over looked? Shouldn’t this problem be getting a little better? See what happens, when I take a break? A whole lot of nothing gets done. I did hear that Mattel is going to make the bald Barbie though. I have not read the details, due to being unplugged from everything but I hope it is true.

Dr. JoRo is in NYC now. She asked for a little list of some things she could for me, during her one day off. These are the things I told her to do.

1) Run in Central Park at night. Thinking she probably will not do this.

2) Visit Sloan Kettering and kick Dr. Kushner in the balls for me. (she could totally dress up like a Ninja and do this)

3) Eat Fro Yo at 40 Carrots inside Bloomingdales. (this might be a little safer and was one of our favs)

4) Eat Pizza at Delizia’s for us. (another one of our favs)

I miss her so much already. She is not a very big fan of our favorite little city. I am doing my best to make her into a New Yorker, without being there to actually do it. Next time:)

Alright baby boy. This is all for tonight. Yes, I’m still in hiding and I have still been hiking every single day for our month of mother fucking madness. And today, I was EXTRA dangerous and did not wear sunscreen. My inner rebel was loving it. I love you. I miss you. I’m so sorry. I hope you are safe.

xoxo

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30 day challenge of mother fucking madness

 

Ronan. The 30 day yoga challenge. I have a friend who is crazy enough and actually did this. Kudos to D. She is crazy in all the best ways. And she loves her yoga. I do not love yoga. I am quite sure, if I were to try to contain myself in a calming, peaceful environment of yoga, that I would go all turrets on their asses and start freaking out/screaming/crying/puking about how I have a fucking dead kid so NOTHING is Zen, NOTHING is Ommmm and I would like to beat the bloody hell out of the Chakras that surround me. I’m pretty sure I would get kicked out of a yoga class, while offending everyone which does sound pretty badass and dangerous… so it’s a little tempting. If I didn’t respect the whole yoga thing so much, I would totally do this. But I secretly love yoga. I’m envious of those who do it, love it, and are better people because of it. I used to love it, Ronan. Before all of this. Now… I’m just not ready to go back.

I’ve come up with my own 30 day challenge, instead. I started it on Monday. It’s called Maya’s 30 day challenge of mother fucking madness. And the weather is getting hotter, which makes it even better. I spent 3 hours on Monday and 3 hours today, hiking/running/puking/crying/spitting/tripping/getting a rad tan. Skin cancer here I come!!!! I’ve decided to have 30 days of hiking for 3-5 hours a day in complete and total silence. I’ve already told your daddy, that it’s 30 days of solitude. 30 days of not talking to anyone because I’m really on a retreat to Italy/India/Indonesia like that Elizabeth Gilbert wah wah wah, my life is so bad, chick. When in reality, your life is freaking awesome lady. Plus, you got to travel to all of those places, solo, and figure your shit out. Unfortunately, I cannot do that, due to having a thing back here called 2 babes to take care of and a husband. This is my modified version of your little trip, Elizabeth Gilbert or whatever your name is. I think I totally have a one up on you though, due to having a dead kid, so kudos’ for that! One of those little silver linings in life that just makes everything o.k.! I am being sarcastic. Because I am in a pissy/sarcastic mood.

So, I started this on Monday and so far, I have not died. I have visions of dying out there though due to the heat/rattlesnakes/weird scary men that appear out of nowhere! when I am in the middle of nowhere!, alone! Rita! I freaking told you I needed a machete! You are going to be really upset if I get attacked and have nothing on me, to protect myself! I have many reasons as to why I am doing this. One being because if I don’t, I quite simply will stay barricaded up in my house, in my bed, crying. Two being because I need to be with you, Ronan. And being alone, hiking is where I feel closest to you. Three being I need the quietness in my head, or to deal with the screaming in my head by talking to Inferno Fuckwad Bob, alone. My head feels foggy. It feels less foggy when I am out, being active and dealing with this grief but in my way, the solitude way. Isolation. 30 days of intense hiking/isolation/how the fuck am I going to get through this? You’d better start figuring this out. You’d better start taking some control of some things. You’d better start because Ronan, as you told Dr. JoRo, in her dream…. “I can’t get to my mom, because she’s too angry. Tell her that, please.” She couldn’t tell me that for a while. She just told me that, last week. She has watched me struggle with this anger. I told her I was less angry and just more sad now. She decided that it was the right time, to tell me the last thing that you said to her, in her dream. FUCK. We both figured out when it is that I hide the most. It’s when I’m angry. It’s because to me, anger is shameful. It makes me feel dirty, like I need to take a shower and scrub, scrub, scrub. I’ve never been an angry person. I don’t know how to handle it. I’m pretty sure I have done/said hurtful things while being angry. I don’t want to hurt anyone so when I am feeling super angry, I hide. If I hide, I cannot hurt anyone with the stupid/mean things that may come flying out of my mouth. I’d rather just deal with my anger and take it out on myself, like on a mountain where I can beat myself up. Where I can find moments of quiet. Where I can scream, cry, bloody my knuckles and nobody has to see me. This is what I am doing, every single day until May 2nd. Plus, Dr. JoRo is freaking leaving me for 2 weeks! Um excuse me! If I don’t do this/and she is gone I am going to go bat shit crazy!

So, this is what I’m doing. I have no doubt that I will be up that mountain for hours upon hours for the next 30 days. I don’t know what I am looking for. All I know at this point is I kind of want to die but I also want to kind of stay alive. I’m just leaving it in the hands of the fates at this point. The exercise feels good to me. The not listening to music, feels good to me. The just being with my grief/sadness hurts like hell but it’s not going anywhere. I’m going to go and join it and truly join it, alone. I’m not filling my days with things/lunches/nail parties/all things I need to take a break from. I’m going to fill my days with silence/dirt/nature/barefoot hiking/blisters/cut feet/sunburns/isolation and solitude.

This is my plan. It’s not much but this is what my heart is telling me I need to do if I want to survive this next month that is coming up. Power through April and maybe it will help you to figure out May.

I’m sleepy, Ro. You would be so proud of your brothers tonight and their baseball game. They looked so great and happy. We all miss you so much. Tonight Quinn got blamed for doing something by your daddy that he says he didn’t do. I looked at him and said, “Just blame it on Ronan.” He giggled. We both yelled out, “Ronan did it!” That made us laugh even harder. And then we got sad because you weren’t here to do it, so we snuggled up together and I just held him and we quietly talked about you.

Your Sparkly said it best. Nobody deserves this. But especially not you. Especially not me. Especially not us. I told him it was you I am saddest for. You deserved so much better. You deserved so much more. You were robbed of living the most beautiful life. I am the saddest for you, always. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

I’m not dead. I may be dying. Or I may just be…

Ronan. The weekend is almost over. I spent it with Liam, Quinn, and your daddy. Not sure all of what we did. We stayed around the house a lot. We played in your room a lot. We made breakfast together and sat around at the table, without you. I am never going to stop being sad. None of us will. But slowly we seem to be coming back together; as a family. For so long, everything felt like it was so broken, that it was unrepairable. It’s not unrepairable. I can feel things being glued back into place. It’s because of the love from your daddy and your brothers, that we will be repaired. It just takes time. None of us are in a rush. You cannot rush something like this. Do you know what your daddy says to me, every night before we fall asleep? That he loves me. And that he is so sorry. We both will never stop being sorry. This is just one of the little reasons, that I know we are going to be o.k. Because we are both so sorry. But there is no blame, no resentment, no anger towards each other. We are both just really, really, sad.

It rained here today. It made me miss you so much. If you were here, we would have gone puddle jumping or played in our backyard, in the mud. Your brothers went to a birthday party. I hung out at home with your daddy, in our quiet house. Our now too quiet of a house that is so empty without you. Your daddy asked if I wanted to go to a movie. I told him no. I didn’t feel like doing much of anything. I watched the rain from our bedroom, instead. I’ve been tired lately. I’ve slept really well, which is weird to me.

So, this new friend of mine, Margarita, has been spreading around some rumors that I am not all that dangerous! Can you even believe that, Ro? She totally thinks she has me figured out. I knew I had to come up with a way, to prove to her, that I am in fact, really reckless and dangerous. It was about 6:15 tonight when I suddenly, felt the need to get some fresh air. I texted her and said, “I’m going hiking. Are you coming?” She told me no, she would not be coming, that it was too cold and wet outside and she hated the rain. And she might hate hiking, too. Yoga. She likes Yoga. I do not. Well, that’s not entirely true. I used to love Yoga. Until my life turned into total chaos. Now yoga make me angry. It’s too happy/peaceful/calm. All the things that I used to be, but am not anymore. Maybe someday I will go back to it. Dr. JoRo swears by it. I’m just not ready for it. I told Margarita fine, but I was going… and it was not all that wet outside. She tried to put up a fight, but once she knew I was serious, she decided to meet me. It was starting to get dark as we began our death hike. I don’t know why I decided to go hiking, so late tonight but you know how I am… once I get an idea into my head there is no stopping me. We hiked up, it got dark, we turned on the flashlight on my iPhone. Soon the wind started to howl, (as well as an owl) and down came the buckets of rain. “Ummm, don’t think we are making it to the top, we’d better turn around!” I yelled to Rita. We were about half way up. Crap. It was really raining/windy/dark/totally dangerous. Rita yelled to me, “Maya, you may call this dangerous… I just call it stupid.” I started cracking up. “You are so going to hate me, after this!” I said. We made it down the mountain, without breaking our necks or spraining our ankles. We both yelled out, “Fuck you cancer!!!!!!!!!!” at the top of our lungs. I told Rita I wouldn’t have been hiking on a pitch black, rainy, windy night if you were still here. She said she knew. She asked why she was hiking, with me. I said because you were not here. Same answer as mine. She agreed.

That was Sunday, Ro. It’s now, Wednesday. Hi. Hello. I have too much to say. I haven’t been writing, for a few reasons. The main one being, I just don’t know how to say this so I guess I’m just going to fucking say it. I’m either dying of some horrific disease (more than likely, cancer) or I am pregnant. Or I am having a false pregnancy in my head which could very well likely be a possibility too. The placebo effect is very real and a total possibility, but I don’t think it’s that. I think I am dying or pregnant. Or both. But maybe just pregnant. How in the world could this have happened, you might ask?? Well, let’s backtrack way far back, to right before you were diagnosed. I had that little IUD removed out of my body. I remember driving home from the OBGYN and having the conversation with your daddy which was, “I just had my IUD taken out….. so now what?” Your daddy asked if we were done having kids. I vaguely remember saying, ” I don’t think so… do you?” We didn’t decide on anything right then and there. We just left it as an open-ended conversation. And then, a few days later, we heard the words that a parent never wants to hear which was, “You child has stageIVfuckingbullshitwhatthefuckthiscannotberealcancer.” Our lives changed over night. The baby thing obviously went on the back burner. I stopped talking about it. Your daddy started to bring it up, right around Christmas time, when we went to NYC to have your base tumor removed from your abdomen. Your daddy would bring it up, and ask why I wouldn’t talk about it anymore. I mostly just ignored him and told him we could talk about it, once you got better. He pushed a little. I ignored him and he pretty much stopped bringing it up. I talked about it with you only. We talked about having another baby brother or sister. You wanted one so badly. We talked about names and if you wanted it to be a boy or a girl. You wanted a sister. We joked about having more twins. You liked the thought of that. You liked the idea of a little one or ones, to boss around. We talked about it a lot, the two of us. It was our little secret plan that when the time was right, and you were better…. another baby was in the cards. Before the blink of an eye, you my healthy boy who was kicking cancer’s arse…. was not anymore. I swear you were doing so well, and then *BAM!* within weeks you were dead. I still can’t wrap my head around how that happened…

So, Ro…. since you’ve been gone, the baby thing has come up again. Not many people have brought it up. Your daddy has hinted around here and there, and I pretty much refused to talk about it. I only really talk to Dr. JoRo about this baby thing. We’ve been sitting with it, for a while. I divulged my deepest fears, lots of tears, guilt, I’m betraying Ronan, what if this baby dies, or gets cancer, or I don’t love it as much, I’m not worthy of having another baby since Ronan died…. I should not be allowed to feel any happiness or love that a baby could bring into this world, and how will I know, when the time is right??? She told me there would never be a right time. She didn’t argue with any of my worries/feelings/fears. We talked about them instead. We’ve talked about all these things for a good 4 months now, in-depth. She had her baby boy, Josh, after Chey died. She gets it. Sometimes I feel as our lives or so parallel, that it was fate that we met the way we did. Your fate. I believe you were the one behind me finding her. I am so thankful to you for that. We have too much in common for it not to be something more then just a coincidence.

It’s just been recently that I don’t cringe every time somebody touches me or gives me love and affection in a physical way. I’ve been so detached from everything and everyone. Your daddy and brothers included. I’ve told Dr. Jo that I think a baby is going to be the only way our family can learn to be a little happy again. It’s been in the back of my mind, for a long time now, but it’s only recently that I’ve started to come around a bit to start thinking about it more. Your Sparkly has been buzzing in my ear about it for a while now. Sometimes I’ll talk to him in-depth about it or sometimes it hurts so badly that I’ll say something snarky like, “Not having this conversation with you, today. I don’t want to go there now.” I always see the sad look in his eyes, when I refuse to have the baby talk with him. He always gives me the look and the, “Please think about it. You are the best mother. Please do it, before I get too old. It would be so good for you, Woody, and the boys.” I usually just look at the ground and try not to cry. And then he asks my to smile for him and I am too upset so I’ll just tell him, “No. No smiles today. And what are you talking about? You are not old at all. You are so young…” There are a lot of days when I won’t smile when he asks. I hate those days the most.

So, it was last Monday that it kind of clicked for me that, “Ok… maybe it would be o.k. to start trying to have this baby. Trying being the operative word here. Just once. Not that it would actually happen, but more like, let’s get used to this idea that we are not going to not try to not have a baby. I woke up Friday morning with a very familiar feeling. The same one that I had with you. Mother fucker! I thought to myself. I’m fucking pregnant! I’m not making those words up. That’s what I thought in my head. There were no tears of joy. No jumping up and down. It was complete and total shock, along with a lot of cuss words that followed. Wait a minute. I did not mean I wanted to actually get pregnant right this second. I don’t keep track when I ovulate or anything. I was just getting warmed up to this new idea. And HOLY SHIT. OH MY GOD. My boobs. They felt like they were on fire. That’s how I knew within in a week of conceiving you, that I was pregnant. I remember I went to meet Tricia for a run. I looked at her and said, “My boobs really hurt. I think I’m pregnant.” I was. That’s always been my first and biggest indication. It’s too early for a pregnancy test and I may full on be making this up. My body is so out of whack these days, I never know what is going on. But I’m exhausted. Sleeping like a baby. My boobs are still on fire. I have an appetite and I am eating weird shit like this seaweed crap from Trader Joe’s that no less than 2 weeks ago, I was making fun for Dr. JoRo for eating. Guess where I found myself, yesterday?? At Trader Joe’s, scouring the aisles for seaweed. Who am I?? What is going on?? I think I have a pretty good idea.

I’m mildly freaking out. But I cannot fully freak out until I know for sure. I can of course say, I was not ready for this. If I am indeed pregnant, I’ll have 8 and a half months to get used to this idea. If I am not, I will be totally o.k. with that as well. But I may be slightly worried about the power of my mind and it’s ability to trick my entire body into thinking that a baby is on it’s way. That will really freak me out and I may consider going on a long vacation to the middle of nowhere to try to prevent this nervous breakdown that is clearly happening due to your deathday/birthday/fuckingmother’sday that is coming up. That is a whole other post that I just don’t have the energy to write about tonight.

I sat in Dr. JoRo’s office for a couple of hours today. We talked a lot about you and the possibility of another baby. We talked about how a baby will NEVER take away this pain/sadness/grief I feel for you. How this baby, will never lessen this pain. How this baby will never replace you. How I need to prepare myself for the stupid shit that people are going to say like, “OH!!! A new baby! I’m so glad to see you are over the death of your son! I am so glad to see that you are moving on! This is a sign, from God! This is what was meant to happen! God DID have a plan, it included your child dying, so this child could be born! You are all better, etc….etc….etc….”

I get that people mean well, but I would really like to hear none of those things. I will never be over the death of you, Ronan. Never. I will never move on. I will never be better. I am just learning how to live a whole new life and this whole new life will always include the pain of not having you. I am learning how to manage these feelings that I now have. This life is wrong without you. This life is broken. This life will never be the same. But I am learning to manage all of this. Manage is the new key to this life now. I can’t change the pain, but I can make it manageable so it doesn’t destroy me. I won’t let it.

That was today. I’ve been writing and not posting. I needed some time to digest the maybe baby thing. Your daddy asked me what I thought you would say about all of this. I told him I thought you would be happy, but sad that you are not here, to be the big brother that you should have been. You would have been the best big brother ever. I’m sad for that too. I’m sad for another reason that has had me hysterical the past couple of days too. Today, is Sparkly’s birthday. I’m sad you are not here, to sing to him. I remember exactly where we were, last year, due to it being his birthday. We were in NYC. You were getting better, or so we thought. You were upset that we could not see your Sparkly. We took a picture of you with your big, gorgeous smile and bald little head to send to him. We sent him a text with your picture and said, “Happy Birthday, Sparkly! We love and miss you!” You were so excited to send him that beautiful picture of yourself. I wished him the best Happy Birthday I could muster up, without having you here to do it with me. I made sure my voice did not quiver while I was telling him to have a great day. I got a, “Thank you, sweetheart,” in return. I could hear the sadness in his voice though. I hung up the phone and buried myself in the pillows of our bed, and drenched them with my tears. I HATE THIS SO MUCH. You should be here, singing in the phone. I should not be on the phone, using my strongest/bravest/I am o.k. but really I am not/but have the happiest birthday ever voice. Please come back. I hate doing all of these things, without you.

Little man. I have to end this now. It’s a long, long, post. I love you to the moon and back. I miss you so much. I hope you are safe. G’nite baby doll.

xoxo