A death day and a birthday

 

 

 

Ronan. May 9th came and went. It was a gut wrenchingly hard day. I did my best. I did all I could do. I did not die. It was a rainy day, as it should have been. I got up, showered, dressed. I went and had lunch with your daddy and brothers on this awful, awful day. We had planned a day of hiking. Just as we finished lunch, your purple balloons arrived. 5 of them. Sent by the most thoughtful board members and little intern on the planet. The one’s who put so much thought and effort into sending us off, on this trip, that we have had gifts to open every single day that we have been gone. All things inspired by you. Things that have made us laugh, be silly, and wild and free. Things that have made us cry, like the 5 purple balloons. Who thinks to have purple balloons sent to our hotel, so we can let them go for you because they know we are in a small town, and wouldn’t be able to find them anywhere? My board members. My intern. My sisters. My family. This is why they are the one’s I trusted with your candy cart for Phoenix Children’s Hospital for your birthday. This is why they sit on your foundation board. Because they know this is not just business. This is about unconditional love, thoughtfulness, and helping when help is needed most. They know this without me having to say a word. This Ronan, is the truest form of unconditional love. This Ronan, is why after all of this, I still think I am lucky and blessed. So very blessed even without you. I know these little blessings are all gifts from you, to keep me going. Thank you so much. I don’t know what I would do without them.

After lunch, I grabbed the 5 purple balloons and hugged the front desk girl and told her thank you with tears streaming down my cheeks. One of my lovely little board members, filled her in on the reason for our “vacation.” She knew the reason for us being there. She looked at me and said, “You are welcome. Please, let me know if you need anything.” I told her I would. We headed out for our hike. We drove to somewhere that was recommended to us. I let your daddy navigate and take us to our destination. I sat, numb, and totally zoned out. I tried to let myself get lost in the beauty around us, but it was impossible to take me away from the world I live in, without you. Once we arrived, we scoped out the trails. We ran through the woods down towards the water. I carried your 5 balloons. We all stood together and each of us, took a purple balloon. Your daddy and I held yours, together. We let them go and watched them float away. We clung on to each other, and I buried my head into your daddy’s shoulders. We stayed that way for a while. Your brothers didn’t really know what to do as they seem to be pretty unfazed by everything that is going on around us. As 8 year olds should be. We went on a long hike through the woods. Every stick I saw, ever rocked I threw, every mud puddle I stepped in, was a slap in the face to me. It hurt, so much. It is so wrong that you are not here, running through that forest, with your brothers like you should have been. You would have loved every second of our family hike. It was the most exhausting hike of my life. It wasn’t physically hard. It was the mental part that I struggled with. Hiking on the day that you died, because you died, because nobody knew what else to do. Talk about a mind fuck of a day.

I heard about the storm in Phoenix on your death day, Ro. A spicy storm on May 9th that could have only been caused by you. I have no doubt about that. I loved hearing all about your storm. Nobody could believe it. The people that love you the most, could. You made it pour down on me, in Maine, and you proved your point with your spicy little storm in Phoenix as well. You are such a little badass.

I don’t remember the rest of the day or night. All I know is I went to sleep, exhausted. No Ambien needed. I have not taken that, since the first night we were on our trip. I have slept alright without it.

I have been so preoccupied with your death day, that it is as if your birthday has come up from nowhere and knocked me down so hard on my ass, that today, I did not know if I could get up. I did. I mustered up the energy to go out for a while to explore our new surroundings as we switched locations last night. A new destination was a good change of pace. We explored for a few hours and then headed back to our hotel. I had a raging headache probably due to all the crying I had done. I crawled in bed while your brothers played outside and your daddy worked. I needed to just shut down for a couple of hours, so I did. I got up when I got a text message from one of our lovies here. She was close by our little town and came by to see us. The two of us went out and grabbed a quick bite to eat. She knew I was having a hard day. She knows first hand, all too well about this life. We quietly talked about all things that two mom’s should never have to talk about. Kids getting cancer. Kids dying from cancer. The how’s, the why’s, the unfairness of it all. I spent the hour at dinner, looking across the table at my friend who has the same eyes as mine. One’s filled with so much pain, that it is palpable. But there is a fire there, too. I see her son, in her eyes, every time I look into them. It gives me strength. I left her still feeling pretty sad, but feeling better about your upcoming birthday. I left there, feeling like I could get through tomorrow, without you.

I came out of the restaurant and I had 16 text messages on my phone. FUCK. I had forgotten about the little insane text message party I had with Rita, before going to dinner. The one where I was laying in bed, sobbing, and she just happened to check in on me. The one where I said I wanted to die, and how many Ambien would it take to overdose? She responded right away with one could not overdose on Ambien, but instead they will lose all control of their bodily functions and shit themselves. Well, that sounded like a shitty plan. I would not like to do that. I then asked her the best way to commit suicide, and told her I was googling it. I was. But not because I wanted to really die; mostly out of curiosity. Rita told me she was not playing this bullshit game with me and gave me the sternest text messaging spanking I’ve ever gotten in my life. I threw my phone in my purse, forgot all about our conversation, and headed out the door to dinner. Once I saw my phone, on text message overload, I remembered what had gone down. I quickly responded that I was alright, so sorry, and I would call her in a few. I got home and called the two people I needed to check in with.

Your Fernanda was first. Ronan. Do you know what she did? It is unbelievable. I left for this trip, and I pretty much left my lovely little board members in charge of Ronan’s Day of Love at PCH. I knew I couldn’t be there, so I left the ones I trust most in this world, in charge of it. I knew they would not let us down. I know how hard this was for all of them to do; but they didn’t blink twice when I asked them. They were honored, to be honoring you in a way that meant so much to me. We have planned for a couple of months now. The candy cart, the balloons, the Star Wars characters to visit the kids. Who would be there, helping. A day of love at PCH, all inspired by you, to make others smile and happy and to forget about the fact that they are in a hospital, fighting this beast that no child should ever have to fight. I had an idea about what it is I wanted for your candy cart, but I gave Fernanda free rein to do whatever it is, she wanted. What she put together, ended up being a freaking masterpiece. I don’t know how she did it, but she did. She spent all day Friday, “Pimping your Wagon,” as she said. She had some great helpers, this I know. Thank you, all. So much. Ronan’s purple candy wagon, complete with an iPod and speakers, for the playlist I made, not to mention a secret hidden zombie underneath, is something you would have gone crazy over, Ronan. It was everything you. It was all you. I could not have done a better job myself. This is the reason, your Fernanda wears your ashes that I gave her, around her neck. Because she knows you inside and out. Because you are her Twinkle Twinkle Little Star. Forever and always.

I called her, I broke down and cried, I told her thank you over and over. I listened to her voice and let her put her little spell on me that she always does. The one where she calms me down and takes me away to a world where only you and I exist and she reminds me to remember this. That you are still here, with me. That you are mine and I am forever yours. Nobody else can do this for me, but her. I hung up with her feeling a little better. I had to call Rita, next. Our very long conversation can be summed up best by this.

Me: I am so fucking sorry. I should not have texted you that I want to kill myself crap. That was not o.k. I thought you knew I was kind of joking. You know me. You know I’m not going to do anything.

Her: You are a mother fucker. You are not allowed to do that to me, set the phone down, and not answer it. EVER! I did not know if you were serious or not. I thought you were really dead. I thought you were really dead, but you know what Fernanda told me? She told me this. “Listen, Rita. I believe Maya wants to die, everyday. But not by her own hands. Do you know how I know Maya will not actually do anything? Because she wears lipgloss. Because she gets manicures and pedicures. Because she puts on make-up and fixes her hair. Because this shows me that for all the pain she’s in, she has a shred of self-love left. She takes care of herself by doing these things. We can all be concerned if she stops showering and wearing lipgloss. Until then, she is alright.”

Rita and I were both in stitches. Only Fernanda could rationalize my madness by saying the key to me not taking my own life, is because I wear lipgloss. Only Fernanda, could make it make perfect sense because it absolutely does. I told Rita, I was sorry again. I truly was. I didn’t mean to make her worry. I was in a bad place and I was venting but it still was not right to do. I know I can be a jackass sometimes. I am thankful she loves me enough to forgive me. I fell asleep last night, cuddled up to your Liam. I was missing you extra much. He felt extra soft and snuggly to me. I soaked him in for the rest of the night, knowing what I had to wake up to. But it was another Ambien free night. I was a good girl, for you.

I woke up, feeling sick to my stomach. Ronan’s 5th Birthday day. I didn’t know what to do. I threw on my clothes with your daddy still sleeping and your brothers were just starting to stir. Out the door for a run I went. A little run that turned into a 2 hour run, partly due the detour I took, to sit in the middle of the forest to sob about you, and partly due to the fact that I got lost. Lost on your 5th birthday, without you. Seemed pretty fitting, actually. I ended up finding my way home, Ronan. I always do.

I made it through the day, thanks to the help of your daddy, brothers, and friends. The 4 of us had a low-key day/night. We all wore purple, from head to toe. I played Lacrosse out in the big, grassy lawn with your brothers. There spent the day laughing and giggling as they should have. I have yet to go on to Facebook but I swear it seems as people all over the world were out doing crazy, kind-hearted things for you. I am moved beyond words by just a fraction of the stories that I have heard. They fill me with a bittersweet hopefulness that I never wanted, but now it will always be mine. I will treat this as a gift. I have no choice. This life I live now, Ronan… is one filled with all things beauty and pain. They will always go hand in hand. I have to learn how to let them work together, while being respectful of one another. It’s a heavy-hearted job but it is my job to do. After today, there is the most amazing proof that I am not doing this alone. So many of my family, friends, ex friends, old friends, new friends, and strangers are in this for the long haul, too. Look at all you’ve done and it’s only been a year, sweet boy. Imagine what we will do, in this lifetime together. So many amazing things. I know this.

To everyone out there, who spent today, honoring my Ronan by being extra kind, spicy, loving, honest, brave, caring, wild and free. Thank you. So much. You are getting me through my darkest days. You are making a difference. You are making him, so very proud. I love you all. Without you, this would not be happening. It is because of your loyalty and love that this world is going to change. Thank you for believing this in your hearts and souls and for being grateful for what it is you have. No matter how much or how little because you all get what truly is important. LOVE and HEALTH. That’s it. Those are the only two things that matter in life. If you have those two things, you have everything.

One last little shout out tonight, Ronan. My lovely little board members, my intern Rissy, and sissy, Liz. I know today was so hard for all of you. Words cannot even touch how thankful I am. You took Ronan’s birthday and made the day of so many parents, kids, siblings, nurses, and staff at Phoenix Children’s Hospital. You made them smile. You gave them a good day full of warmth and love. That is priceless. You all are priceless. Thank you for all of your hard work, love and turning today into a day that was all about Ronan, without it having to be, “All about Ronan.” I am blown away at how perfect everything turned out, but not surprised. Just very, very humbled and grateful. I love you all, so much. I know he is so proud. Thank you, thank you, thank you.

Alright my Ronan. I need to end this now. Happy 5th Birthday. You would have been the most beautiful 5-year-old to walk this planet. This is beyond fucked up. This is beyond unfair. I am so sorry. I made one wish for you tonight. That I of course, hope you are safe. I love you to the moon and back. I will fix this. I will make this better. I won’t break my promise to you. I promise on my life, that I choose to live. Because this living thing is a choice and I am not going to waste it. I will live for you. Until you are ready for me to be with you, once again. I love you. Sweet dreams.

xoxo

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I don’t need words. I just miss you.

Ronan. Yesterday went a little something like this: May 8th, the eve before you passed away. We went into town. It was raining cats and dogs. We all decided it was a good idea to see a movie so into the dark theatre we went. I was fidgety. I was anxious. I kept squirming in my seat. I ate a little popcorn. I had a huge wave of guilt wash over me, sitting in that movie theater, watching “The Avengers,” which is a movie you would have loved. Your daddy looked at me and said, “You can go. Go get a pedicure or something.” He didn’t have to say it twice. I up and bolted before we were even 10 minutes into the movie. I could not have run out of that theatre, fast enough. Out into the pouring down rain of the streets of Portland, Maine, was where I needed to be. Alone. I didn’t have an umbrella. I didn’t care. I just started walking, not knowing where I was, or what I was doing. I walked for a good 15 minutes before I finally found some random salon where I could soak my troubles away. I ran in the doors. “Do you do mani/pedis?” asking like my life depended on it. “We do.” the glossy girl behind the counter said to me. I was so thankful that they had an appointment open.

As I was sitting and waiting, a nice girl was waiting next to me. The conversation started because she was dying over the rain boots I was wearing. You know the ones. Those badass Hunter Wedge heel Rain Boots/my obsession that I never get to wear. I wore them yesterday and whenever I do, I have women stopping to ask me about them. She wanted to know where I got them. I told her. I also told her how excited I was to wear them, because I never get to. She asked where I was from and I told her. Then came the next question. “What are you doing here?” My eyes fell to the floor and the tears starting welling up. “Ummmm…. I stumbled over my words. Somehow I found them, but not without sobbing and apologizing everywhere. I barely got the words out of my mouth and this stranger started bawling too. She got up to give me a hug and told me how sorry she was. We ended up going back to the pedicure area together where we talked all about you. The poor girl that was doing my pedi was quiet as she listened and when I looked down, she too had tears pouring down her cheeks. She didn’t say much for a while. I not only noticed her tears, but the pretty purple shirt she was wearing. Of course it was purple. She finally looked up at me and told me all about her best friend, who had bone cancer. How she watched her struggle through it and how she was leaving for San Diego tomorrow, to go and visit her. I started crying harder. What is it about pedi/mani places, that I always end up crying the hardest? I guess I really miss you when I am there. I really miss you and how I would take you to get your toes painted sparkly and you were always so exited to show everyone at PCH. Sparkly toes for the most sparkly boy.

After my pedi of tears, I met back up with your Daddy and brothers. We went to grab some dinner at this place the girls in the salon told me about called, “Silly’s.” And silly it was. In the best way possible. You would have gone crazy over it. Quinn went crazy over the purple kool-aid that they just happened to be serving that day. Liam went crazy over the deck of cards they had in the special lunchbox on the table. Your daddy went crazy over the chocolate milkshake. I went crazy over the fried pickles. Fried pickles, Ro. Can you believe that one? You would have went crazy over them, with me. Your daddy pointed to a table of two girls that looked to be in high school. They were sitting at a table together, playing cards, drinking cokes. Your daddy kept saying, “This is totally a place you and Salina would have come and hung out. You two are such Jacksons.” (his word for silly) I smiled. I watched the two girls at their table. They reminded me of my youth. With my childhood bestie, Salina, and the world of complete and utter silliness that we created and always lived in. The two girls didn’t look silly though. They looked serious. Like the two of them lived in a world, where they were fighting for everything they had; but they were doing it together. It made me ache for my youth when everything was so uncomplicated and easy. Well, compared to now. I know the world of teenaged drama all too well. I remember the “problems,” I had back then. I look back now and know that they actually weren’t problems at all. They were lessons learned and part of growing up. I am thankful for all of them. As we finished up our food, your daddy took Quinn across the street to get some snacks. The waitress brought out check. I told her I would like to pay for the girls’ sitting across from us, as well, so to please put whatever they had, on our tab. She looked at me, wide-eyed. “Do you know them?” I just quietly told her I did not. I told her to give them 2 of your F U Cancer bracelets for me as well. She smiled and said she was sure they would be grateful. What I really hope is that they will just remember this small act of kindness and do something else nice, for somebody else someday, just because.

We all came home, tired from the days events. I tried to lay down but it was early. I don’t remember what happened next. The time you passed away, was getting closer and closer. You want to know something, Ro. I don’t know the exact time you died. I’ve been too scared to look at your death certificate. That makes this all too real. I think it was around 3:25 a.m. I know what time it was, that I sent my one and only text message, after you left to your Mr. Sparkly Eyes. It was 3:32 a.m. It simply said two words. “He’s gone.” 2 words, but so earth shattering. Two words, but how could there have been more? 2 words were all I needed because any other words I had, would not touch the fact that you had left this world. You leaving this world was enough to dim every single star in the sky for that night. I know the sky was covered in a blanket of black.

Your daddy lit a candle for you last night. Everyone fell asleep. I did not. I watched the candle flicker. I went in and out of sleep. 1 a.m. 2:30 a.m. 3:00 a.m. and I was wide awake.  3:32 a.m. came. I sent my only text message, once again, to our Mr. Sparkly Eyes.

Except exactly one year later. This time it read:

Fuc. (fuck you cancer)

I love you.
He loves you.

Always.

I cried. I fell asleep for a couple of hours. I had the most vivid dream about being back at PCH. You were dead. Dr. Adams was there with me. She was dressed in all purple and looked so stunning. She held me like a child and I just told her over and over how I wished I had not taken you to Dr. K. The rest of my dream just consisted of the both of us sobbing and I remember her purple dress being so bright and pretty. I woke up to my phone chirping like a bird alerting me of a text message from your lovie at around 5 a.m. I read it, cried again and fell back asleep until my phone rang around 8 a.m. I threw on my Uggs, warm sweater and ran outside to pick up the phone for the only person I knew I would be talking to, today. Your Sparkly. I ran out into the cold, fog, and drizzly rain. Of course the weather is this way, today. Of course it is.

“Hi.” I was already crying

“I’m sorry. I’m so sorry.” the talking stopped and I just listened to your Sparkly cry.

I went quiet on my end and we sat there this way, on the phone for what felt like an eternity. Crying. Sobbing. What else could be said? No words were even necessary.

I babbled out a lot of “I don’t understand,” over and over. I babbled out a lot of why’s. Why him? “I’ll never understand this.”

I asked him, “How am I supposed to do, today?” in between my tears.

He said, “Don’t. Don’t do today. Spend the day in bed. Have a fuck it all day because this is fucking bullshit and there is no explanation.”

I told him I couldn’t. I couldn’t do that to Liam and Quinn.

“O.k. then. Go play in the sand. Do something that Ro would have loved to do. Who cares if it is raining. It should be raining. It should be raining, everywhere.”

“Alright. I will do my best.”

” I will check in on you later, o.k.?

“O.k.” I said.

“My heart is broken for you. I’m sorry.”

I crawled back into bed for a couple of hours. I knew I had a long day ahead of me and I had already felt like I had run a marathon.

I’m ending this right here, Ro. I’m tired. I don’t know if I can write much more about all the went on today. I will try, later.

I love you. I miss you. I hope you are safe. I am so sorry, baby doll.

xoxo