The Silver Lining in the Clouds. I Wonder What it’s All About.


Ro baby. I haven’t been avoiding you. But I’ll admit it. For the first time ever, since starting this blog…..I’m scared. Scared because of the weakness that I gave into. Scared because I’m NOT as strong as everyone is always telling me I am. Scared because of the many days that I don’t think I can survive this. Scared because of the reality that I had to wake up to, after truly trying not to survive this because the pain is sometimes just too much. Scared because I came closer to the dark side than I ever have, and it was so easy to do. Just like that. No thought. Only impulse. Consumed by the pain of my reality, that you are never coming back. NEVER. I know I talk about you dying all the time, but do you want to know the truth? I still think in my heart of hearts, that you are going to come home again. That your Daddy is going to one day, walk through that door, carrying you in his arms. That is how delusional I am. This is how deeply I just cannot wrap my head around the fact that you are never coming back. I cannot accept your death. I cannot accept our pain. I cannot accept our life, without you. I just want you back. I want you back, so badly that I feel like it should so easily be able to happen. This is how my delusional mind works now. Nothing is real, so your death can’t possibly be real, right?

I told Dr. JoRo that so many nights, when I’m out running, all I think about is some van pulling up next to me, grabbing me and pulling me inside of it. Do you know what I see in that van? A bunch of men in white coats and masks. They are holding you and you are alive. They explain to me that you really are not dead. I see your face, your smile, your tears of joy because you are back in my arms, where you belong. These men tell me that this was just an experiment to see how strong a mama’s love, really is. To see how much pain a mama could handle, before she could handle no more and did something really crazy. Like the skydiving I am planning to do on Thanksgiving. I’m just trying to decide if it will be with or without a parachute. If you would have asked me last weekend, I would have said without a parachute. If you ask me tonight, I would say with one, please. Dr. JoRo and I joked about this tonight. The skydiving thing. We laughed as she said I should throw a turkey out of the plane before I jump. Then our dark sense of humor took over as we giggled about the headlines of the news that day. “Runner killed by a flying turkey, on Thanksgiving Day.” And they said turkeys couldn’t fucking fly. Oh, how wrong they were about that.

So, Ro. After the weekend of the dark side…. it was very highly recommended that I go to Sedona on Monday, to see Dr. Jo. I drove up there, happy to do so. I like that time alone in the car, driving to the place that makes me feel a little peaceful. I had a lot of people offer to drive me but I politely said no thank you. I needed to clear my head, before I bared my soul. I was greeted by Dr. Jo, like always except for her hug was a little tighter this time and I had to listen to her apologize for being out-of-town, for work, during my little crises. Nonsense I told her. It wouldn’t have mattered. I knew that we were in for a long session, to figure out what lead up to this. Besides the obvious.

We talked about my week. Shit. I had a lot of shitty shit shit, happen. Too much shit that I wasn’t even aware of, because I had let everything build up and roll off my back. Trying to be the Superwoman, that I so am NOT. I need to remember this, more often. And Halloween. I was not prepared for how hard it was going to be, but I had tried all week to prepare myself for the worst. Our favorite holiday, without you. NO. All of your “friends,” dressing up in their costumes. NO. Thinking about what we would be doing, if you were here, like you should be. What would you have worn? I spent most of the week thinking about not being able to dress you up. I spent most of the week, crying about it. I went to PCH to help Sandra. I ran into a girl there who used to work at the front desk of the clinic. “How’s your baby!?” She said. “My baby?” I replied, puzzled. Do I have a baby?? I couldn’t remember. I said, “You mean Ronan?” She said, “Yes, I haven’t seen you guys in a while.” I must have looked like a deer in headlights. “Oh. He passed away.” I said as the tears formed puddles at my feet. She felt so bad. She hugged me and told me how sorry she was, that she hadn’t heard as she had been out on maternity leave. I told her thank you. I asked how her baby was and did my best to get myself under control. I had to put on my best game face so I could go and try to help my friend. I did an o.k. job. Helping out Sandra, is one of the few things that makes me feel o.k. in life. It reminds me of why it is that I am going to keep fighting this fight when there are so many days that I do not want to anymore. Seeing the way cancer has destroyed Mia’s little body and robbed her of her childhood pisses me off so badly and it is exactly the kick in the ass I need to carry the fuck on. Or so I thought, but it didn’t save me during my weekend of death.

Back to my Dr. JoRo session. It was long. Grueling. We made a plan because I cannot have another weekend like last weekend. My plan does not include any sort of hospitalization. Sorry to all of you out there, who think you know best. You don’t have a fucking clue. I know you mean well, I know you care, but please don’t act like you truly knows what this feels like for me so therefor, you know what is best for me. Because you don’t And I hope to RO, that you never do. I do not need to be in an institution. That is not the answer. What would that solve? My safety? No. A hospital cannot save me. Dr. Jo cannot save me. My husband cannot save me. My living children, cannot save me. Only, I, myself, or the self I have left, can save me. ME. ME. ME. ME. Not you. Not my friends. Ronan? Yes. Of course, Ronan. Can you bring him back to me? That is the only thing that would 100% guarantee that I will be able to survive this life. I know I have to keep going, but sometimes I just want a break from all of this pain, this life, these tears, this heartbreak. I have to find that break, without breaking myself and everyone around me. I am thinking of trying out for a fucking roller derby team. I’m thinking I had my little break over the weekend and it was the wake up call I needed. I think I need to figure a lot of things out, so I can start to put myself back together again. I think I need to start letting my husband back in a little more and stop pushing him away so much. I think I cannot do this alone, like I have tried so hard to do. I think this life is totally fucked but it is my life to live now. I think I’d better start figuring out how to do that, sooner, rather than later.

Dr. JoRo is checking in with me everyday. Your Daddy and I went to her support group last night. Together. It was the first time we have done something like that, the two of us. I tried to tell him he didn’t need to come, that I could do it alone. He insisted. I am so glad he did. I arrived first. I sat down, in my chair and immediately felt myself retreating into my dark, alone place that I often tend to go when put into a new group setting. The room soon filled with other parents, all there for the same reason as me. Because we all belong to the same fucking club. The club I like to call My kid fucking died and I don’t want to be here anymore club. The worst club to be a part of in life. Dr. Jo was leading the group which is the only reason I went. She arrived and things got started. Everyone took turns going around to tell their story. It was almost my turn to talk about you. Your Daddy walked into the room, late and sat down next to me but not before kissing my lips. I just looked at him and buried my head into his chest. I couldn’t talk last night so he talked for me. He told a little piece of our story, to this room full of sad strangers. I hid my face in the side of his neck. Dr. Jo asked if I wanted to say something. I told her No. I couldn’t stop crying. I told her I didn’t want to be there. She said she knew. I stayed though. We stayed. Together. For as bad as it felt, it felt good too. The group lasted 2 hours. It was full of so many different people. Young, old, black, white, Believers and Non Believers…. once again I am reminded that death does not discriminate. It can happen to anyone. Everyone is at risk of losing a child. No matter what choices you make in life. Good or bad. It doesn’t fucking matter. After the group broke up, we talked with Dr. Jo for a bit. I was so glad to introduce your Daddy to her, and vise versa. It was like watching 2 parts of my soul, connect. It was magical. Your Daddy talked to some other parents. I sat with Dr. JoRo and watched him. She looked at me and goes, “He has quite a presence, doesn’t he.” I looked at her and told her I knew. He’s always been that way. I am so fucking lucky to have him. I am so fucking lucky and thankful that he loves me so much, that he is willing to put up with me and all of my craziness. That when push comes to shove, he’s not leaving. Ever. And how I love to push buttons. I think it was Sunday night that your Daddy grabbed me and told me enough was enough. That I needed to stop because no matter what I did or what hurtful things I said, he’s not going to walk out on me, the way that my dad did. That when he married me, it was forever so the self-destruction that I am engaging in, needs to stop because he’s not going anywhere. His words slapped me hard. His words shook me to the core. Sometimes I need to shut the fuck up and just listen to him. I did on Sunday. I need to do it more often. The truth of the matter is, we are in this, together. Forever. He lost you too. He can’t lose me as well. I won’t do that to him. You loved him too much. I love him too much. My grief often blinds me of this. I needed the little wake up call I had over the weekend. It had to happen for me to realize a lot of things that I have been forgetting.

After our support group last night, your Daddy and I had a late dinner out. It was the first time, in so long, that we have went out, just the two of us. We sat at Hillstone, in a cozy booth, and tried to act like the normal couple that we no longer are. The normal couple that I would give anything to be again. The normal couple that we used to be that felt so blessed and thankful and proud of the life we had created which revolved around us and the three of you. We shared the artichoke dip and a burger. We talked quietly but I was soon distracted by the early 40 something couple who was sitting in front of us, making out and feeding each other apple pie. I started stabbing my burger with my very sharp knife, over and over again. “Really people. WTF. Who is THAT happy? At 40? They are either having an affair, or they are having an affair. Nobody is that happy. I think I am going to throw this burger, across the room at their table.” Your daddy looked panicked as he now thinks I am so out of my mind, that I may actually do it. He grabbed my hand. “Stop stabbing your burger. Calm down.” But I didn’t want to calm down. I wanted to really chuck my burger across the table at them. And I wanted to tell them how I used to be that happy, until you died. But I think it is gross to make out in public and that they needed to get a room. And feed each other apple pie, elsewhere so I didn’t have to stab their eyes out with my knife. Your Daddy and I got up and left there, holding hands, as it was the best we could do. We are doing the best we can do, which at this point only seems to be surviving. But surviving together.

I started writing to you last night. I couldn’t finish it. I was so tired that I fell into a deep sleep almost as soon as my head hit the pillow. Your Daddy asked for time with me. For me to put the computer away. I snapped at him and instantly felt guilty. I should have explained to him about the anxiety I was feeling, from not writing to you, for a few days. How I want him to understand and respect that although you are not here, I still need my time to take care of you and now, that comes in the form of writing to you. Without this, I don’t know how I would cope at all. How important this is to me, to still nurture the relationship between a mother and a child. My dead child. How guilty I feel, during the times that I don’t write to you and how that guilt builds up because I feel like I am betraying you. Like you will think I have forgotten to tuck you in at night. My writing is my version of tucking you in, bathing you, kissing you, feeding you, holding you, wiping your tears, fixing your ouchies, and loving you. It is so important to me to continue this, for you. And for me. So, I started this last night, but should have listened to your Daddy because the fight I tried to put up, insisting that I needed to write to you, didn’t even pan out because I was that tired. Without the Ambien. You know what I’ve found is a natural remedy for sleep? Tears. Lots of tears. Endless amounts of tears that never stop so that when the night comes now, I am so tired that sleep is just begging for me. Such a far cry from the insomnia that consumed me for a good year.

I woke up today with a fuck ton to do. I woke up late. 8:00. I was so tired I felt like I could have slept for days. I took your brothers to school and got ready for someone to come over to the house from AZ Central to take my picture. Weird. It was actually fine. But something that I’m obviously not used to in my regular mama/cancer mama/bereaved mama life. I threw on a wrap dress that I have had forever. I took the time to blow dry my hair and throw on some red, spicy MAC lipgloss that I love. Because I heart red lips for everything. Red lips make everything better. As soon as the photographer got here, we settled into an easy chit chat. He was super sweet and I told him to make this picture thing as painless as possible. He laughed and said no problem. I also told him I really wanted to wear my purple TuTu and my Fuck You Cancer shirt, but I was thinking that the Arizona Republic would not embrace that. He laughed and said I should have, but I was probably right. Can’t win em’ all but it was the thought that counted, right? He took some pics outside. I tried to smile but I told him how hard that is for me now. He said he was sorry told me that I didn’t have to. So I didn’t. I didn’t feel like faking it today. I didn’t have the energy to force a smile. No big deal, yo. Just another day in the life of being here. Or just being.

After the AZ Republic guy left, I wrote a little, and tried to get a handle on the overflowing mounds of laundry that I have been avoiding. It is all clean, but has just been sitting in our laundry room, piling up to be folded. UGH. I had an interview with Arizona Foothills Magazine at noon so I was trying to chill before that. I wasn’t sure what to expect. I had no idea of the major AWESOMENESS that was in store. My friend, Heather, came over for to hang out for the interview. She knows Michael Dee well, and is really good about breaking the ice and bringing about a positive, crazy energy. She also brought me Starbucks which I was in desperate need for as my weekend of death hangover still seems to be looming about. We hung out and soon Michael Dee and his communications director and amazingly talented photographer, Sarah Love, arrived. As soon as I opened the door, I let out a sigh of relief. I felt the love and connection, instantly. Good people. These are really good people who are here to hear our story because they truly care and want to help. I gave them a little tour of our house. I joked with them about the mounds of laundry and asked if they knew how to fold. They laughed and said they would do it in a heartbeat. I didn’t think they meant it. It turns out they did because that is how our amazingly almost 3 hour interview/therapy/crying/laughing/feeling you everywhere, ended. With the 4 of us, folding my laundry. Our house for 3 blissful hours, was filled with an amazing raw and organic energy as I talked about you and this crazy painful adventure that is beginning. Michael asked how I feel about being an inspiration to others. I told him I honestly didn’t think about it because all I see is you, inspiring me. And if that turns into inspiring others, than that is such a beautiful thing. If others are ready to embark on this ride with us, I hope they are prepared to hold on tight. Because it is going to no doubt be bumpy, rough, scary, and at sometimes, it is going to feel like death. But I know the end result is going to be something out of this world. Something so different, special, and strong…. just like you. Something that is unlike anything this world has seen. Because never was there a boy, as beautiful as you, Ro. The beauty of your physical self and soul combined was so powerful and I as your mama, know this. Guess who else is figuring this out? The whole wide world. The whole wide world who wants to be a part of this change. Not only in the world of childhood cancer, but in the bigger scheme of things as well. They all know, because of you, that there is more to life, than just THIS.

Ro baby. I am so tired. I miss you so much. I know I don’t have a choice. I HAVE to do this. Thanks for reminding me of this.

To my Arizona Foothills Family- Michael Dee and Sarah LOVE. I love you. Thank you for loving me. For loving, Ro without even knowing us. Until now. After today, you will forever be a part of our hearts and souls. I cannot wait for our monthly laundry folding therapy sessions. GO BIG OR GO FUCKING HOME! You are now, family forever.

xoxo

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29 thoughts on “The Silver Lining in the Clouds. I Wonder What it’s All About.

  1. Melissa Vendt

    I am so glad Woody got through to you if even just a tiny bit on Sunday….so glad he is your forever rockstar hubby. I honestly can not imagine how you all are surviving this ….the horror, the pain, the torture, the nightmare. May Ronan’s love for each of you hold you closely together so that you will not only survive, but that your love will be strengthened and produce something more beautiful than ANY of us could have ever even IMAGINED!

    Ronan CLUNG to life, he FOUGHT FOUGHT FOUGHT until he took his very last breath, Maya…you sweets are following in his precious lil footsteps.

    ❤ ❤ ❤

  2. Sara

    Wow…..you are the shiz….you truly capture every definition of the words: mother, wife, friend, force, beautiful…..and so many more….

  3. Jera Hengst Banks

    I am holding on tight and have the super seat belt on. Sometimes a helmet, purple with sparkles of course. I love you mama Maya and your Ro. We have never met and hopefully someday I will get that chance. I do not know how you feel, but you are not alone. I am listening, crying and nodding along. I have been since May and won’t stop. I have really missed you that last few days. When I am with you there is no faking it and I need that so badly.
    Jera

  4. Jennifer Ann

    Im so sorry you had a terrible weekend. Maya I know I have no clue as to how you feel each day and I cant even begin to tell you how mad/sad it makes me feel to know that anyone has to go through what you have. Every time I read your letters to Ro it breaks my heart and I just cry. I know you may not feel strong, but to the world you are super woman.

  5. nicole b

    I have been away on an island (literally) for a few days, but I’m always checking in. Always thinking of you and Ro. And my heart is aching more and more each day because I know how the pain gets deeper. I lost a loved one in 2007 and the way I explained the increase in pain was that with each passing day without her, it was more time missed, and more time away meant more pain. Deep, deep pain. Maya, I send so much love. So much of what we are required to do here on earth is to struggle and survive. And I hope you can access your warrior, your survivor. Because you’ve been through an absolutely unfathomable fucking hell and you have to go through it over and over, again and again. the least and best that any of us can do is stand beside you and absorb so of the blows. I hope you can feel that so many of us are out here, standing beside you, and loving Ronan. Even some of us who never got to meet him before May. He is still part of our lives, part of us.

  6. Katie

    How does air get in when you wake up and you can not breathe? You amaze and inspire me. Everytime I sit and read your love letters I cry and think how can she do this. How can the world be so fucking unfair? I have an 18 month old boy. I could not fucking even try to imagine or want to. You were so strong for Ronan. You made him feel safe. You have posted so many pictures of him. He is absolutely beautiful and smiling and happy in all of them. This is because of you. Your boys, husband and you. Continue to be strong for Ronan and we will keep fighting right along with you. I can not take you pain away. No one can. You need to breathe it and feel it for Ronan and yourself. I will breathing right alongside you though in Baltimore.

  7. Farrah

    Keeping all of you in my thoughts and prayers. I’m so glad Dr Jo has come in to your life and I hope she continues to be a tremendous blessing to you and Woody. Lots of love to you!

  8. Jaime H.

    Thinking of you, praying for you and your family, wish I could end this nightmare for you. I know you will accomplish great things through all of this though! You have a sea of support and love around you! Sending love and hugs, xo,

  9. kazisharon

    You are always in my thoughts, I always wish for moments of peace for you. Ronan would want you to stay, fight and live. Much love to your family…..we cry with you.

  10. Rachel New York, NY

    keep going maya…one minute at a time…we hear you and you’re making a difference. ronan and your family are truly making this world a better place. i rarely respond to your posts even though i read them all – i just kind of absorb them because sometimes i feel there are no earthly words adeuqate enough. your thoughts give me fuel to keep doing more in this fight against childhood cancer. my loving friend’s son liam died in january – it’s unthinkable. i truly truly believe a mother’s love is so strong that it’s a gargantuan source of universal power, strong enough to change the world entirely. wishing you strength daily from new york city, rachel

      1. ann r. in ny ny

        Pressed buttons to quick. U r a true fighter I wish I could take away all the pain all the tears. I am sorry

  11. Kendra

    I don’t have any words but I wanted you to know that I am still here and still listening. Like so many others. I’m so sorry you’re in this dark, scary place. I wish so much that I had a magic wand that I could wave and put your world back together for you.

  12. s. wallace

    you matter. your beautiful son Ronan matters. His story inspires me to love better and be better each and every day. I think of you daily and hope you have peaceful moments. I do not understand your pain, won’t pretend I can even come close to knowing the heartache you deal with each day, but I do care. you and your baby boy are touching lives and making a difference.

  13. LS

    Maya, I’m not clear what you’re saying here. Did you, or were you on the serious verge of, harming yourself? That seems to be what you’re implying. You’ve scared us a few times with your words but your “razor blades” quote at the top and then your words that follow are really scary. Please put our minds at rest if you did not actually do anything which would risk the boys ending up without a mom.

    1. Jenny

      No. Our minds are not at rest because this is Maya’s reality, and it’s scary and awful and it SUCKS. Maya – sending you love and hope.
      “Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come.” ~Anne Lamott

    2. Melissa Vendt

      None of this is about our minds. EVER. Our minds should not be at rest again anyway. Ronan is gone. Too many other babies have been lost and too many more are still fighting. If we know this story at all, our minds will not and should not achieve rest–just striving to be and do better for the children, for the future, for our world. See: How to Live Like a Rockstar….

      Love to you Maya.

    3. Ali Barnes

      I feel that if Maya wanted to elaborate then she would’ve. Really, it’s none of any of our business. She is writing to Ronan, not to us, so she owes no one any explanation. She owes us nothing…but we owe it to her and to Ro to be supportive and spread the word about childhood cancer.

      1. Ali Barnes

        I wasn’t sure whether or not it would be appropriate to post as I don’t know you personally, Maya, and I wasn’t sure if it was overstepping a line and I didn’t want to seem like I was speaking for you or have any real idea of how you feel, so I’m glad I didn’t offend.

        Sara, ‘really?!” was my initial thought as well!

  14. Laura

    Maya,
    I cannot begin to imagine the pain you and your family are in right now, nor do I want to give you some lame old line like it will get better with time…FUCK that. You are right, FUCK CANCER and FUCK anyone who judges you and how you are dealing with the loss of your baby!! You are an amazing woman and a true inspiration to others, don’t ever forget that!

  15. Desiree

    This might be the most heart-wrenching post you’ve written since Ronan’s passing…. I literally felt like I was going to throw up, reading & feeling your words of such intense pain, and that’s not even remotely close to how you feel on a regular basis… Oh Maya… I’m so so sorry. I’m thinking of you EVERY single day, sending love & support always. Keep hanging in there, Ronan is by your side every day, every moment, every step of the way.

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