Somedays, the littlest things are too much

 

 

Ronan. Tonight, I am sad. As in, really, really, really, sad. I suppose that was bound to happen, after the build up of the marathon, the actual marathon itself, and now it’s over. I am sad, every single day, but today I just miss you so freaking much. I had a quiet day. Those are the days when I miss you the most, because if you were here, there would have been nothing quiet about my day. I hung out at the beach with your brothers and cousins for part of the afternoon. That pretty much sucked. For as much as I love seeing Liam and Quinn, soak up every single thing that they should be, it still feels wrong to me. I am still constantly still looking for you, over my shoulder. Doing normal things, is still not easy and it still stings. Today, I tried to get lost in the ocean for a bit, on my surf board. Not even that could wash away my pain today. I stayed out only for about 40 minuets. The waves were big and I  kept getting tossed underneath the water, again and again. At one point, I got tossed so hard underneath the water that I thought I might drown; but then I remembered I was wearing my wetsuit. I may have hoped to drown for a few seconds, but my headed popped up above the surface of the water where I could breathe again. Lucky, aren’t I?

After our afternoon at the beach, I brought your brothers back up to our place. I played the role of the best mama ever. I made them dinner, sat and ate with them, did laundry, cleaned up, watched a movie with them, and tucked them both away in sleep, in bed with me. The big huge gaping hole in my heart won’t go away, today. The lump in my throat, won’t go away today. The alligator tears, are never-ending, tonight. Somedays, I get tired of being so strong. Somedays, the screaming questions of why, why, why, are unbearable. Somedays, I get tired of hearing how our story has made people, better people. Somedays, it stings to hear how much of a better mama or daddy people are, because of us. They all get to tuck their kids in at night. I do not. I will not, ever again. Where is my prize? I just want you.

I’m sad tonight, so I’m going to end this now. But I’ll leave this sad little post, with something sweet down below. A little slide show of how I got though May, how I ran a marathon, without training, and how I will continue to get through this life without you physically here with me. With the help of a lot of a lot of inspiring people out there, who remind me that I am strong, even when I think I am not.

I love you. I miss you. I hope you are safe. Sweet dreams, baby boy.

xoxo

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Training is for suckers! 26.2 Easy breezy, baby!

Ronan. I might be awesome. I woke up this morning at 4 a.m. and thought to myself, “I’m running this marathon today. It’s going to be easy.” I showered, dressed, tucked a baggie full of your ashes, inside my little carrying belt and woke up your daddy and brothers, to drop me off. I had your daddy take a sharpie and write your name all over me as well as Ava’s and our little dragon friend, too. Because you are all worth fighting for. They dropped me off at Balboa Park and off I went, alone, to wait for my race to start. While I was waiting, I sat in the grass, took my sharpie and wrote some more things on my legs like, “Fuck Cancer.” I had some girl come over to ask if I would write on her too, so I did. I put her friend, Christy’s name on her arm, her mom’s and then I asked her if she wanted your name on there as well. She said she would love that so I wrote “RONAN,” in huge letters on her arm. She told me she was only doing the half marathon and thought it was awesome that I was doing the full. She asked how long I had trained for and I told her I hadn’t trained at all. She looked at me like I had 3 heads and said, “What?! That’s crazy!” I just smiled and told her I knew. The funny thing was, I wasn’t nervous at all. I hadn’t set any expectations for myself except for I just wanted to finish, and have fun. I secretly in my head had thought to myself that I would like to finish in 5 hours, but I didn’t put a ton of pressure on myself about it.

I got to my corral and before I knew it, we were off and running. I was running, running, running. My pace felt good and I felt relaxed and almost as this was a little too easy which did not make any sense because I really have not been running at all. I kept my mind focused on you most of the time with bursts here and there of everyone who I knew, that was rooting for me. That made me smile and pushed me to run harder. Heather and Sam were waiting for me around mile 9 which I loved. Heather was all dressed up in some crazy purple outfit and they had about 20 purple star balloons for me. I carried those balloons for about 3 miles. People kept yelling at me that the balloons were slowing down my pace and to let them go. I didn’t care. They made me smile. I kept holding on to them until I found a little kid on the side of the road, to give them to. He was so excited and it made my day, to make his.

I think the first half of the marathon, I totally kicked butt. I do remember thinking around mile 10, “Shit, how am I really going to run this whole thing?” I quickly pushed that thought out of my mind which wasn’t hard when I remembered the reason that I was running. For you and all the other kids out there dying from or fighting this disease. I thought about you and all that you put up with. The surgeries, the chemo, the broviac dressing changes, the bone aspirations, the radiation, the traveling back and forth, and being torn out of your perfect little 3-year-old world and transformed into hell, in the blink of an eye. That was the only reminder I needed to shut the “oh my god this hurts,” voices off in my head. I knew that nothing was going to stop me. I hit the halfway mark and started to have a lot of fun. There are P.F. Changs photographers everywhere, I ran past one of them, flipped him off and he yelled out back to me, “HAHA, hey fuck you!” He was cracking up, which made me crack up. I yelled back at him, “That was to cancer!” He yelled back, “I like your style, Rockstar Ronan!” This got me to mile 16 and by this time, my left toes were numb and hurting. I looked down and the entire front of my left shoe was covered in blood. I pulled over, took off my shoe to reveal bloody toes galore. Ouch. I quickly decided there was nothing I could do about this, so I just put my sock and shoe back on to continue on running. I was in a lot of pain so I walked when I needed to. I had a dance party in someones front lawn. I drank a beer around mile 19. Some kids had a table set up outside their house, with cups of beer in it. Why the heck not, I thought and I chugged it. It made me laugh and think of you and how you used to love to sip on your daddy’s beers. Somebody else was passing out Otter Pops. This may have saved my life! Never has an Otter Pop tasted so good! I think I had about 3 of them, also while thinking about you as this was one of the last things that I fed you. I maybe got a little emotional at one point, but I pushed my tears aside because my sadness turned to anger which pushed me to keep running. I saw Heather and Sam again and they covered me in silly string. I stopped to talk to them for about 5 minutes. I wasn’t really concerned with my time as the fun of it all, made me care less. Around mile 20 Becca and Holly were screaming for me. I stopped to talk to them for a while, too. They asked how I was, I yelled, “This is easy! Fuck cancer!” They both looked like their eyes were going to pop out of their heads. They told me they were expecting me to be hurting and hardly walking. They were expecting to see a whole different Maya then the one who was smiling back at them. After I finished chatting with them, I ran off to finish my last 6 miles. The last six, were the hardest. I walked a lot. My left foot, was throbbing and I was limping. I had no clue of my time but I was thinking I was well past the 5 hour mark. I walked for about 2 miles, then once I knew I only had a couple more miles to do, I started to run again, but my running only lasted for bits here and there. The last mile I powered through and ran as fast as I could with my bloody and blistered toes, telling me to stop. I didn’t listen. There was no way I was walking through that finish line.

Your daddy and brothers were waiting for me. I started to tear up for a few reasons. One being because I was so happy to see them, but I was so sad that you were not waiting at the finish line for me, like you should have been. A mix of emotions, filled me. Happiness, sadness, excitement, disappointment, anger, and relief. I also felt pretty proud of myself. I looked at your daddy and said, “Worst time ever, right? That had to be well over 5 hours.” He goes, “No way. You finished at 4:51. That is a great time, for not having trained at all.” I smiled. “Really?! No way!” I could not believe my time was under 5 hours. I totally winged this marathon, stopped a bunch of times to just hang out/take it easy/drink a beer/eat some oranges/pound some Gatorades/have a dance party in some random persons yard. I didn’t take anything about this marathon seriously except for the reason I was doing it and the reason I was going to finish it. I had a BLAST. When I trained for the New York one, my time was 4:27. If I wouldn’t have spent all that time, goofing off for this one, I would have beaten my old time! But I think that would have taken the fun out of it for me. I think I will always do marathons this way, for the rest of my life. No training. Just enjoying the experience of it without any expectations or build up. After I ran the NYC one, I said I would never do another one again because I was so burnt out. After running this marathon, I am so ready to do another one! What a difference a good attitude and a little perspective can make in one’s life. This right here is proof that it really just is mind over matter. If you want something badly enough, and you have a big enough reason to go after it with all that you’ve got, anything is achievable. ANYTHING.

So today, I am sore. But not as sore as I thought I would be. Today, I am filled with a proudness within myself, that I have not felt for a while. I know you were there, with me yesterday, pushing me when I needed to be pushed, but also reminding me to have fun. I felt your spirit filling me throughout the day, whenever I would laugh, giggle, or do something a little naughty like flip off the photogs. I ran that marathon for you and all the other kids who won’t ever be able to run a marathon because they were cheated by cancer and death. I’m so sorry for that. The only thing that would have made this better, would have been you waiting at the finish line, for me. Your brothers and daddy looked so proud. I know you are proud too. That’s all I want in life, besides a cure for that asshole called Neuroblastoma; is for you to be proud. I think you were yesterday. I think this is why I know I am going to do amazing things for you in life. Just to make you proud. I promise you this.

I miss you, I love you, I hope you are safe. Thank you to everyone who helped support me with this little crazy idea of mine that turned out to be something amazing where our goal was achieved. I will be talking to Scott from Solving Kids’ Cancer tomorrow or Wednesday and we are going to get the show on the road to fund Dr. Mosse’s trial as enough money was raised. This was also for her. For her dignity, grace, braveness, and compassion that she fights for every single day in doing the work that she is does. I am thrilled to be able to support her. Love you, all. Thank you, again. None of this would have been possible, without you.

xoxo

 

Burn baby, burn

Home. That’s where we are heading. No more hospitals, no more clinics, no more. As I sit here holding Ro on our flight home, all I can think about is, “Will this be his last airplane ride?” It can’t be possible. He was supposed to be coming with us, to Ireland soon. He was supposed to be going to Washington with us this summer. He was supposed to go on my most favorite family vacation to the San Juan Islands on the big boat that Papa Jim will drive. We were waiting until he was 4 to take him on this trip. This is the sickest, cruelest joke in the world. When did life become so hard? That’s the scariest thing; because everything changed overnight. I had no idea how precious life really was until all of this. I’ll say this over and over; I will always wish this was me and not him. I’ve done enough in my life to be fulfilled. He will never get the chance.

So after all of this, I’m sorry to say that if my baby boy goes, there is not a God. God would not do this to a child, a family, to a mother. God can fuck off. I’ve put all my faith out there I only to have it ripped away from me. If “God” takes away my child, I’m going to go burn down a mother fucking church. I’m going to go crazy and I have every right to. The pain that is in my heart will NEVER be healed. For those of you who want to judge me, think less of me for writing these words, or to wonder how I could say such things…. You are not allowed. You have not walked in my shoes, even if you think you have in some sort if way; you have not because you were never a mom to Ronan.

I am about to go home, to the only place Ronan wants to be. I am about to have the toughest conversation in my life with my twin boys. Ronan is their best friend and I am about to tell them the thing that they have feared the most. I’ve stopped eating as I have no appetite. It’s been 4 days now and the thought of food makes me sick to my stomach. I ate some cheese and crackers today only to get Woody off my back. Fuck all if this.

You don’t need to worry about my sanity, as it is gone. But as a mom I know it us my job to put on a very good show as to not traumatize my twins. I would never let them see this insane pain I am feeling. I love them too much. I know I will get through this, but now, sitting on this plane ride I am beyond angry. My emotions change from circumstance to circumstance. The moment I step off this flight, I will put back on my positivity shoes that seem to come off every now and again.

I want Ronan back. I want his hair, I want his healthy body, I want his laugh and bright eyes. I want his naughty trouble making soul that always reminded me of me. He is my little clone on the inside. The two of us never skipped a beat. You know who this is going to be the hardest on? My Quinn. Ronan and Quinn are closer that Quinn is to his twin brother, Liam. How us that even possible? Twins are supposed to have this crazy connection, which my two do; but it is nothing like the connection Ro and Quinn have.

There will come a time after all of this that I am going to go crazy, mark my words. It may take me jumping out if a fucking airplane, visiting some crazy country, running another marathon, but something is going to have to give. I’m not living a life full of limitations anymore and I’m not saying no to things that come my way. I’ve just walked through hell and back and I’m done with all the superficial bullshit that life has to offer. I will spend the rest of my life, helping others, not because it is good for my ego; but because I’m going to make a difference in this world and change the way people’s warped minds think. I will put every ounce into making sure my twins turn out to be just like their Dad; as there us not a better man in the world. I will make sure they know the meaning if living a life by their rules, as long as they don’t hurt others. I will guide them, love them, and we will never forget out Ronan who has forever changed our lives. They will be raised to have an impact in this world in honor of their brother. The most amazing little soul who has ever existed on this planet.

They will be taught to never judge people, as judgment is my least favorite quality in a person. Nobody has the right. They will grow up open-minded, respectful, fearless, honest, and I will support them, guide them, and love them with every bone in my body. I know that I am going to have to work extra hard to fulfill the love that they have missing from Ro. I am more than prepared to take on that task as these 8 months away from them have been horrific. This has been so unfair to them.

We made it home safe and sound. My little busy bees had everything perfect. I told Fernanda and Bethany I needed all new bedding for Ronan in my bed. All white, all calm, all peaceful, all new. He has been so sick in my bed for all this time; he deserves to now be surrounded by nothing but the softest sheets, pillows, blankets, white everything like a fluffy cloud. I asked for Fernanda to make me dinner so I wouldn’t have to worry about it. Done. I begged NY Miss Macy to get on a flight asap to spend the weekend with us. Done. Time is not on our side and nobody knows how much time we have left with Ronan. Anything I have asked of my friends, has been done and more and I will never be able to thank them enough. I hope they know how the only reason I am still standing is because of them. I would be so lost without them. Thank you my angels. You all know who you are.

We were met at the airport by somebody from Hospice whom I chose to ignore. So rude of me I know, but I am so numb and so in denial that I couldn’t do anything else. She came over to our house and I let Woody deal with her. I unpacked some of our things and just pretended like she wasn’t here. Woody asked if I wanted them here for the weekend. I told him no way and to make them leave a.s.a.p. My manners were nowhere in sight today and for that I apologize as I know at some point we are going to need them. But not yesterday, not this weekend. All I want is one normal weekend where I can pretend like this isn’t real. Which is why we didn’t have any talk with Liam and Quinn yet. Just one weekend is all I’m asking for where we can pretend like we are a normal, happy, family. Liam and Quinn deserve as much normal time at home with Ronan without having to know too much.

Auntie Karen and Liz came over to unpack for me. Heidi and Luke came by so Ronan could play with him as he has been begging to see Luke for days now. I sat and watched as the sweetest little 10-year-old boy cry over his worry for Ronan. I just told him I loved him and all that mattered was that Ronan was so happy to be home and so happy to be with Luke and his brothers. My dear, sweet friend, Aubrey (Dr. Maze) came by to give us his support. It was hard for me to look at him tonight as I had so much to say but nothing was appropriate with all the kiddos around. He sat and watched me buzz around, taking care of Ro, getting food for the kiddos, he watched the complete chaos of my life which I so love. I was so happy to have him here. He is a part of our family now. He loves Ro so much. After he left, I put Ronan in my bed and took the hottest bath alive.

Ronan and I fell asleep shortly after my bath. All cuddled up in our cloud of a bed. Thank you again girls. It was the most peaceful night of sleep that I have had in a very long time. We are up early… 5 a.m. Not sure why but Ronan was demanding that we get up. Whatever that boy wants, that boy gets. He’s watching “Mickey Mouse,” while I finish this post. We are going to the twins’ baseball game today and Woody is helping coach. Tricia and Macy are picking up Ronan and myself as I’m not sure if I can drive. Today we are going to be as normal as we can and normal now consists of giving Ronan morphine around the clock to keep him out of pain. My mom gets in today. Don’t know how I’m going to look her in the eyes. I’m so mad at everything and everyone about this. I’m not ready to let him go so soon. I pray that he stays with us as long as possible. I want to see my baby turn 4 on May 12. I want him here for Woody’s birthday on May 24th, for Tricia’s on May 25th, for Mother’s Day, whenever that is. I don’t want to spend this Mother’s Day without him. Please. Somebody listen. I have been on my knees, begging so much that they are bloody.