New York Miss Macy and the Candy Store Girl

Ronan. Hi my baby. Nighttime is here. The stars are out. Everyone is asleep. Slumber party in my bed. I hate the time between now, and when I actually fall asleep. It’s too quiet, too calm, too still,  and too lonely without you. It’s the time when my heart feels the heaviest and my mind is so restless. Thoughts of you being gone fill my head and cannot be stopped. It’s as if my mind is screaming that you are gone, but my heart refuses to believe it. I cannot fully accept what is the truth, as true as it is. The magnitude of life without you is too much to take. This is a big part of why I write to you. I write until I can take no more, until I am so tired, that my mind and body finally give in and sleep comes to me. I have no idea how I am getting through this thing called life, especially with the lack of sleep that now consumes me. Somehow, I just keep on going, trying to do my best to ignore everything that is telling me to stop. I want so badly to stop being strong. I would give anything to have you back and to float through life, without knowing this pain. Who the fuck decided this was my lot in life? I want a refund.

All I can say is thank god for New York Miss Macy. I was this close to jumping off our balcony today. Ok…. not really, but she could not have come at a better time. Your brothers and I need a distraction and some laughs. She provided both of those things today. As soon as she arrived, there were hugs all around. We got her settled in and decided to walk to go and get some lunch. We took her to Burger Lounge, where and we all had lunch. Afterwords, we stopped at the candy store to get some treats. The same candy store that has toy pistols and rifles handing on the walls. All I wanted was for you to be with me so I could buy you one. I imagined you running down the street with us, shooting everyone. I stared at them for a minute and caught myself starting to get choked up. I am so glad for what happened next as it has kept me giggling all night. I watched this scene play out like a movie. Let’s call it: “New York Miss Macy and the Candy Store Girl.” Ready……scene….. ACTION!

– Maya goes to the register to pay for her candy and the grouchy teenaged girl working, gives her the total bill with a scowl on her face. Maya watches as New York Miss Macy is standing next to her and takes a couple of pieces of candy out of her bag, before paying, and starts to eat them. Maya watches as the Candy Store girls eyes glance over to New York Miss Macy and a look of annoyance comes over her face. Maya thinks to herself, “Is the Candy Store girl really getting mad because Macy is eating a few pieces of her bulk candy before she pays??” She decides it is only her imagination as isn’t it a given that you munch on a few pieces of candy before you pay when you go into a  bulk candy store?? Not 3 seconds later, the Candy Store girl looks at Macy and goes, “I’m going to actually need you to PAY for that candy, BEFORE you eat it.” Macy, whom is clueless as to what she was even doing because it is just second nature, looks up and goes, “Um…. what?? Yeah, o.k.” Maya is trying to hide her laugher. Macy pays and we scurried out of the store. As soon as we exited, we burst into laughter. Macy goes, “Wait, did I really just get reprimanded for eating a few pieces of my candy by a 15-year-old girl? What is she, the candy police???” This is so something that would only happen to Macy. It made for a lot of laughs tonight.

After our candy store incident, we continued on our walk back to our condo. As we were all 4 walking back, we were looking out at the ocean. Dolphins appeared. We stopped to watch and ended up climbing down some rocks to sit on the beach for a while. We watched the dolphins and played in the sand and water. We ended up having a sand and water fight because sometimes in life, it just makes sense to do silly things like that. It made perfect sense tonight. You would have loved every second of it. At one point, Liam and Quinn were in the distance, playing, just the two of them. It was surreal to watch and I felt as though I was having an out-of-body experience. I will never get used to it just being the two of them, without you injected in the middle. Nothing is right anymore and nothing makes sense. As we were walking back, I got a text from Danielle. It was if she had read my mind from a few minutes earlier as her wording was almost eerie. Something along the lines of how she wants you back so badly for me that it hurts. How you are the light, the finishing touch, the pistol that keeps me alive. She then ended it with, “Fuck. I hate life.” Danielle is one of those people in my life who just gets it. She gets everything. She has a lifeline to my soul and to yours. Her words brought me comfort, for as sad as they may be; they are always true and real. She takes the time to really sit and think about all of this that we are going through and when we do talk about it, I feel as if she is living inside my mind because she says everything that I am thinking. We have a very strong spiritual connection. Thanks, D. Miss you much.

Now that Macy is here, I was able to get in my run tonight. I was totally unmotivated and dreading it. I almost didn’t go. The little voice in the back of my head would not have shut up if I didn’t. I knew this so I headed out the door and ran a fast 6 miles. It actually ended up being a really good run. I’ve missed the pain and release of running these past few days. I broke my record on my NIKE iPhone app for my fastest 10k. Guess I was feeling it after all. I returned feeling better and hopped in the shower before we started movie night. The boys and I decided that we would introduce Macy to one of our favorite movies, Ro. “Zombieland.” She had never seen it and it had her laughing within seconds of turning it on. The more I watch that movie, the more I love it. Seriously, Top 10 favorite movies of all time for me. She loved it too. I knew that during all that laugher, one thing was going to get to her. That one line that will forever cut like a knife. “Take away a man’s son, and you’ve truly given him nothing left to lose.” I watched her wipe the tears from her eyes. I’ve decided that I would like to live in Zombieland because this normal life without you is for the birds. If I have to live without you, I would rather do it by being a badass and killing Zombies than living in this painful life that now exists. At least I would have a lot of things to take my anger out on, besides myself and the nobody who answers to me. The nobody that is to blame, the invisible being that took you away. Somebody should have to answer to me and to explain why. I hate that nobody can give me a reason for this because there should be a reason. If you had to be taken away, I want to know why. And I don’t want to spend the rest of my life trying to figure out why this happened to you, but I don’t know how I can ever come to peace with any of this unless I have somewhat of an answer. Gee, fuckwad. Thanks for the fucking journey that I now get to figure out in life. Thanks for taking my beautiful life and smashing it into a million pieces. I HATE YOU.

But I love you, Ro. I love you to the moon and back. I am still here, despite my pleas to you. I’ll stay here for as long as you want me to be. I know I have to help change the way of this disease for you. Everything I do in my life will be for you. Everything I have done in my life since the birth of you and your brothers, has always been done by putting you all first. I was so happy to do this. It brought me such happiness. Now, I have to go on and continue to do what I have been doing for so long, which is being a mom; without you. I will continue to do this but I will never stop feeling like I have a limb missing. As well as a big chunk of my heart. This is permanent. These scars are not going anywhere. I don’t know how people say they fade either. If anything, I think they just get worse. They are for me anyway. To each his own.

I love you baby. I love you so, so much. I miss you every second of the day. I hope you are safe.

xoxo

                             Family Forever

New York Miss Macy, Quinny, Mama Maya, and Li Li

A Sea of Sadness

 

 

Ronan. Hi baby. I’m waiting to board my flight back to San Diego. It’s late. I had to leave you tonight and somehow I made it to the gate of the plane. I had an o.k. day. I kept busy and luckily I had enough things around Phoenix to do to keep me that way. I ended my o.k. day with dinner at my favorite restaurant, Chelsea’s Kitchen, with my lovelies, Tricia, Danielle, Marisa, and Stacy. It was a good dinner and it felt good to be with my girlfriends. Tricia took me back home after dinner and she and Marisa helped me pack up my things to get back to San Diego. I didn’t have much to pack, but they helped me with little things too like making my bed and picking up little things here and there. I kissed your urn goodbye and told you I loved you. I had a hard time leaving the bedroom where you sit, all alone in the dark. I didn’t want to go. Marisa left me with a hug goodbye and an I love you. I miss her so much. As soon as I sat down in Tricia’s car so she could take me to the airport, I started to bawl. I stared at your bedroom window and all I could think about was how you were never going to play in there again. Tricia pulled out of our driveway and held my hand. I cried all the way to the airport and said things out loud to her that I don’t really say to other people, but I think in my head all the time. She asked where I thought you were. I told her I didn’t know and how hard that is for me. She told me that she thinks you are always with me. In my heart of hearts, I think that too, but it doesn’t ease the pain any less. When we got to the airport, she insisted on coming in with me instead of just dropping me off at the curb. I didn’t put up a fight.
She walked me to security where we both cried, hugged, and she told me how she would never let me go. How we will get through this. How much she misses me. I just held her tight and told her I knew. I hate so much, that you, her first godson, are gone. I will never forget the day I asked her to be your Godmom. It was such a special moment in my life.  I hate how badly she hurts. She was with your Daddy and I when you came into this world. She was the one holding my hand with your Daddy as I screamed for another epidural. She saw how perfect you were after you were born. And then she stood with me as you were diagnosed with cancer. She held my hand through everything and watched as you got sicker and sicker, but refused to believe the worst. She watched the worst come true. She watched you come into this world and she watched as you left. Along with feeling the pain of missing you, I feel the pain of everyone else around me too. How can one person be given so much to handle in life?? How am I expected to survive this when not only do I feel like dying because you are gone, but because everywhere I look, I see nothing but sadness and tears in everyone else’s eyes. I am swimming in a sea of sadness and all I want to do is drown. I don’t even want to use the word, unfair anymore because that is such a weak word. This is beyond unfair. It’s mother fucking fucked up.
 Today, as I made it though the day without crying, I sat in the waiting room of my therapists office and I was going through all of my new emails. I saw one that was from Dr. Mosse from Chop. She sent me a real, heartfelt email that said things such as she hoped it wasn’t  too disruptive or painful to hear from her. She simply wanted to reach out and say hello, to let me know that you are in her thoughts as she comes to work everyday and thinks of you as she works harder to find a cure for Neuroblastoma. For something so simple and so little, it meant the world to me.  I started crying as I read her words and sent her a quick email back to thank her for taking the time out of her very busy life to check in on us. I told her how I am struggling and a big part of this comes from the what if part of if we would have chosen her path, for your treatment. I told her that I will always second guess our decision. I told her how I was sorry because I didn’t listen to my heart after our first meeting with her. When we first met Dr. Mosse, I sent Fernanda a text that simply said, “It’s her. She’s going to be the one to save our baby.” Then we went out to New York and met with Dr. Kushner, whom I really liked. Whom I really believed too. So, I shoved my “gut,” feeling down as far as I possibility could and ignored what was in my heart. I will always wonder, what if. Your daddy and I have gone over and over this. He is sure if we would have went to CHOP, that your outcome would have been the same. The bottom line is, we will never know. We will never know and you are gone. Something has to be done about this. Someday, a cure has to be found for this disease and it has to be understood because no family should go through something as horrific as this.
Tonight, I feel weak, scared, and sad. Tonight, the feeling is back like I cannot breathe. I would like to go to sleep and never wake up just the way you did. Tonight, the pain of being on this airplane all alone, without you, is just too much. Where is my Bryson friend when I need him? There are no Bryson’s on this plane tonight. It is full of people. People who are busy. People who are happy. People who are unhappy. People who are unsatisfied. People who don’t care. People who have no idea how many children die of childhood cancer everyday. People who have no idea what it means to truly feel, to truly live, to truly be grateful for every little thing they have in their lives. At one point in my life, I used to be like these people. Unaware of how precious life TRULY is, because life just WAS. It was a given, not a gift. I never took the time to fully understand how precious life really is, how precious every moment in life, no matter how good or bad truly is because whatever it was…. I was alive and I had 3 healthy children and I never second guessed that things would be any different. Now I know. I know because you are gone and I am the closest to knowing what it feels like to being dead, while being alive. I don’t want this life without you, Ro. But I also respect that this life is not my choice and I cannot decide when it is my time to be with you again. I respect that I have to take care of your brothers, your daddy, our friends, and family. I have a lot of people who I cannot let down. I cannot let you down either.
So sorry for the pity part tonight, my love. I will push though this, pick my head back up, and stay focused on the job that you have given me to do. I refuse to fail you. I love you, Ronan. To the moon and back baby boy.
I wrote that last night, Ro. But was too tired to finish it. I had a hard day today. We spent the day moving out of the unit that we have been in for a month and into a new unit. It’s a different building, overlooking the bay, and it is pretty much the same layout of the unit that we stayed in over here when you were just a year old. This has opened a floodgate of memories for me and I have spent the majority of the day crying. As I was unpacking the car with your daddy, he noticed my tears. He picked me up off the ground and held me for a long time. I hate everything in our new life that we are doing without you. I hate that today, I unpacked the car without having to worry about you running around crazily in the parking garage, as I pictured myself having to chase after you to make sure you wouldn’t be hit by a car. Today, I had none of that worry and it is all I wanted.
Once we got settled in our new place, we went into town to eat. We ate at our favorite Burger place here, just the 4 of us. You would have loved the chocolate milkshake that I shared with Quinn. It had a ton of whipped cream on it and your brother laughed as I fed it to him. You used to LOVE your whipped cream. After we had our lunch, we ran into the grocery store to get a few things. As I was walking through the frozen food aisle, there it was. Your Fettucini. I felt like passing out on the spot. I stopped and stared at the Marie Callender’s Fettucini Alfredo that you lived off of while we were in the hospital at PCH. You always hated hospital food and I cannot count the times we would cook this in the microwave together and how happy it made me to watch you gobble it all up. It was the one thing I could always count on you eating. I loved feeding it to you because of all the calories it had in it. I’ll never be able to look at that Fettucini the same again. I’ll never be able to look at a lot of things the same again.
We came back to our unit and tried to get unpacked a little more. Mimi and Papa came over to take Liam and Quinn to see “Cars 2.” Your daddy tried to talk me into going out on a date with him, but I couldn’t muster up the energy to go anywhere. I was just feeling too sad today. I did get out for my nightly run though. I did my usual route; a fast 6 miles. Around mile five, I started to feel sick to my stomach. You know me and my notorious throwing up ways if I run too hard or too fast. Luckily I found some nice bushes out of sight from anyone and out came my one meal of the day…. lunch. I finished the last mile and now here I sit. I still feel sick to my stomach and I’m sure it’s from the combination of you being gone and pushing myself with my 8 minute mile tonight. I had a lot of anger to pound out on the pavement and it seemed as if my feet were on fire. Too bad my body decided that it was too much because it felt pretty good. I haven’t run in a few days which always makes me extra anxiety ridden, depressed, and leaves me with extra nervous energy that I don’t need. I had to get that out tonight otherwise I was going to end up doing something drastic; like eating a bag of donuts.
Alright my little man. This is all for tonight. I miss you so very much. Sweet dreams and I hope you are safe.
P.S. A very Happy Birthday to my dear Laura Leigh Chase. My friend since we were 14. My friend forever. I’ll never forget the day in our 8th grade P.E. class when we got “married.”  It was the most gorgeous, sunshiny day outside and we skipped off, holding hands, and went to pick the flowers on the side of the hill instead of participating with the activity that we were supposed to be doing. Instead, we decorated each other with flower hippie headbands and had some pretend to marry each other ceremony. 17 years later and here we are, mama. I am so proud to still be able to call you one of my best friends. I love you. And I am so happy you married Kasey in real life. Have a beautiful day my dear, sweet friend.
xoxo