Losing you is like somebody just turned all the lights off

Ronan. I had a bad day. A day where I didn’t get out of bed until 1 or so this afternoon. I am in a funk and I can’t seem to shake it. I cannot shake being in this condo, which as I told you before, is exactly like the one we stayed in when you were so little. Everywhere I turn, I expect you to come running into the room. I think about you 24 hours a day. Today, everywhere we went, I was reminded of you. I hope someday this makes me happy, but as of now, it only brings me to tears. We had a family day out today. Once I was able to get myself out of bed that is. I tried so hard to enjoy life today, but the screaming in my head kept me from doing so. I can put on a good enough show to fool your brothers though. Thank god I’m such an amazing actress.

We took your brothers for pizza and wound up at the movies and saw, “Kung Foo Panda 2,” together. Seeing a movie used to be one of my favorite things to do. Now, it is so hard for me to sit still and focus on a thing and I was so grateful when your daddy asked for a refill for our soda,  so I could be the one to get up and get it. Before all of this, it was always your daddy’s job to refill our pop for us. Just something silly that I would always insist on him doing. Now, I happily was the one to do this for him tonight. I was crawling out of my skin during that movie. At one point, I started to cry. I was sitting between your daddy and Quinn. Quinn was holding my hand and saw the tears. He just took my hand and kissed it. I kissed the top of his head and told him I loved him. The movie was actually really cute. I know you would have loved it. It was all about finding your inner peace to be the best you can be in life. What I wouldn’t give for that. I used to have total inner peace. It is so hard to finally achieve that in life and then to have it ripped away over circumstances that you have no control over. You were the creator of my inner peace. You completed it all. Will I now forever be tortured, destroyed, and half of a person?? Walking around so numb and in so much pain that I am just thankful to make it though another day without you just so I can go to sleep in hopes of seeing you. Because that is what my life is now. I am trying my best to find the joy in the beautiful things that surround me, but the world seems so ugly without you. It’s as if the blue sky has disappeared, the birds have stopped singing, and the sun has stopped shining. I am thinking I am becoming severely depressed as I’m so tired of this life without you.

We are not going to Washington this summer to see Nana and Papa. It’s the first time that I haven’t been home during the summer in 18 years. Washington summers, especially after I had you boys, has always been one of my favorite places in the world. And to think last year, when we were there, your little body was so invaded with cancer. And we had no idea. We had the BEST time, just soaking up nature and enjoying the simplicity that comes with being there. It has always been such a peaceful place for me but this year, the thought of going there is much too painful for me to process. I’m so sad about missing the time with your Nana and Papa Jim as having you boys there for the summer makes their entire year. I feel like I’ve let your brothers down as they have been asking to go. I told them maybe for Fall Break. I tried to explain why I can’t take them there, but I don’t think they truly understand. I suppose anywhere we go, is going to be painful. But for some reason the thought of going to Washington without you is something I am not ready for. To be in my old bedroom, from when I was a teenager, where we spent every year, for the past 3 years together, snuggled up in my old bed…… I just can’t do it as of now. I don’t have the strength and that whole inner peace thing that I am now lacking would eat me alive if I were there. I’m sad about it and you know how much I am going to miss the time with Nana and Papa Jim. It is the first summer of missing so many things. Most of all, you.

So, I started reading this book called, “Growing up in Heaven.” I’m about 60 pages into it and I am really trying to keep an open mind about it as well as the author, as he claims to be a Medium whom can bring to light the journey of children who have passed from earth to heaven. You know I am all for that Medium stuff and I was hoping this book would give me some peace of mind. The first chapter or so, I was really getting into it. I then made the mistake of Googling this James Van Praagh guy as I was convinced that I needed to seek him out, asap, so he could help me get to you. Bad idea. As soon as I got to this guys website, I was instantly turned off. There was NOTHING authentic about it. It’s all glitz and glamour…. and it felt fake and phony. But guess what? For the small price of 4 grand, I can take a cruise with this dude and he will do a reading for me! I think I said it best when I sent a text today and it said how I was reading this book and how I was about to call BULLSHIT on James Van Praagh and his exceptional gift for communicating with the dead. So, I’m guilty. I’m totally judging a book by it’s cover. I’m a skeptic. Not because I don’t believe in things like this, because I truly do think that there are many people who are blessed with extra spiritual gifts in this world. But this man is talking about how the child’s spirit just comes to him and he is able to see them plain as day. I wish I could say thank you to this man because according to him, you are up in heaven, where everything is white and colorful, riding a fucking Shetland pony, all while getting an education AND helping others. If he would have left shit like that out, I may have bought what this guy is selling. Some of what he says, seems to be spot on with what I believe in about a person’s soul…. but the other stuff just seems like smoke and mirrors to me. He sure does have the part down about the grieving parent role though. Although, it is not rocket science. No shit that I feel like I have lost my identity, that I am in a robotic state, that I am numb. And no shit that physical fitness is a wonderful way to deal with stages of grief because I HAD NO IDEA that exercise releases endorphins into the bloodstream! This guy  is a genius!!! Oh Ro….. I have no idea where this feistiness from me has come from tonight…. you must be hanging around, channeling it into me. I loved it when I would call you feisty and you would scream back to me, “I NOT SPICY!” Still makes me laugh on the inside all of the time. I miss your little voice and how you would call me, “Mama.” Never mommy or Mom. Always mama. I miss it so much.

Anyway, back to the book baby. I’m being awful about it. But I’m going to finish it and I hope that I do end up believing in this guy because I would love nothing more, besides the obvious like you coming back, than to think that you are up in heaven, playing with your pony, helping others, and that you are so happy and free. I would love for that to be the truth because if you cannot be here with me, that is exactly where I would want you to be. Except the pony thing is a little weird. I’d rather have you playing with Master Yoda and Captain Rex instead.

I’m tired tonight my sweet boy. I’m going to take my Ambien and go to sleep with your brother, Quinn, who is right next to me. I love you so much. To the moon and back, forever and ever. Just you and me. Sweet dreams my monkey. I hope you are safe. You are forever loved.

xoxo

I’ll follow you into the dark

Ronan. Hi baby. I miss you so much. This morning I woke up late and so did your brothers. I didn’t fall asleep until about 3 a.m., so we slept in until around 9. I don’t know what exactly happened this morning. Actually, I do. A couple of things. Your daddy called. He was upset. He said he had awful nightmares about you all night long and did not sleep well. His dreams of you are always the same. He dreams of the two of you playing together, and you are so happy. But then you die. Hearing your dad’s voice today shook me to the core. He was so upset, which in turn, upsets me.  I then got on the internet and I was obsessing over Neuroblastoma stories, treatments, doctors, etc…. It was like I was in a black hole and could not come out. Even though you are gone, and your little life could not be saved, I sit and obsess about what we could have done differently. It’s pure torture, but I also find the need to educate myself as much as possible. I cannot get this Dr. Sholler out of my head either. After an hour of reading, I was in a bad place. I came out of my room to make your brothers breakfast and the fighting between them started up. I lost it. I mean, completely lost it. I started bawling in front of them, telling them how I could not handle their fighting today. I told them how it was not fair that you just died, and how they need to be so thankful that they have each other and LIFE, as you didn’t have a choice to live life anymore. I told them, as I was hysterically crying, that I was so sad about losing you that I don’t even know what to do anymore. Uhhhh… maybe a little too heavy for 7 year olds, but today, I couldn’t calm myself down. I think I scared them and I know it upset them to see me so upset. They both ended up crying and wrapping their arms around me and telling me they were sorry. We sat for a while and cried together and talked about how much we miss you and how much we are all hurting. I told them how it is good for them to cry, how I understand that they are boys and they are going to fight, but today, I needed them to cut me some slack. Today, I just could not emotionally handle the fighting that I know is a natural part of being brothers. But today, I just needed a break. They gave it to me and after we cried and I got them settled down, I had them sit at the table and do some writing and workbooks. I mainly did this so I could get in my phone call with my therapist, Sarah. I closed my bedroom door and as soon as Sarah picked up, I was a blubbering mess. I don’t remember much about the beginning of the conversation, but I ended up calming down. I think she even got me to laugh about a tee-shirt we were joking I was going to have made. In fact, I know she made me laugh which is why I love her so much. She has that same dark sense of humor that I do. I eat that stuff up. It works for me. We talked a lot about you, of course. She told me how it’s like I’m living in a paradox world. I couldn’t agree more. That is so how I feel. We talked about your old soul, as we are both convinced that you are one. She thinks I am one as well and we both think that I have known you in a past life. I have no doubt that we have been together many times before you were born, Ronan. It is why our bond is so strong. After my talk with Sarah, I felt better. She pulled me out of the hole that I was ready to bury myself in today. I got off the phone with her and got Liam and Quinn ready to head out to the Padres baseball game with your Papa Charlie, Uncle Larry, and all of your cousins. They needed a day out and the baseball game was the perfect place for them.

Your Mimi Kay asked if I wanted to head over to Fashion Valley with her. I said, of course and we spent the day together. We had lunch and shopped a bit. We had a good talk about you. She told me how Papa dreams about you all the time and how you always have your hair. Mimi says when she dreams of you, you are still bald. I told her how I don’t dream about you. She said she is sure that I do, that I just don’t remember it. I hope she is right. Not dreaming about you is really hard on me. I would give anything to see you, even if it is only in my dreams. That is the best it is going to get for the rest of my life. I don’t even know how to comprehend this. How can you really be gone. How can only being able to dream about you ever be enough? It won’t be, but it’s all I have now, Ro. So please, come and see me and let me see you. I’m not scared and I miss your face so much.

After my day out with Mimi, we returned back to Coronado. Your brothers were on the lawn playing baseball with your cousins. I put on my running clothes and ran a fast 6 miles. After my run, I went and played baseball with everyone. It was sweet and fun but it also hurt. All I could do was picture you playing with us. You are always missing from everything we do and it is so hard to go on with everyday things like playing a baseball game. You would have been proud of the ball I caught in the air that got Liam out. You would have been proud of the way that I thought of you when I caught that ball. I think of you in everything I do. After the baseball game, we borrowed your cousin, Layne, for the night for a sleepover. I told you the quietness of having you gone is eerie. Having someone around to play with your brothers is good for us. The louder the better. It makes them happy and seems to help them. It helps me too. The quiet scares me and is something that I am not comfortable with.

If I could have any wish in the world, Ronan, it would be for you to come back to me. Please. I’m begging you. I don’t know what to do without you. I feel dead. I don’t think I’ll ever feel alive again. I know I have your brothers and I know how lucky I am to have them, but that still does not make the pain any better. How can I live without you? Is this whole thing even real? I said today to Sarah, I feel like I’m on that show “Lost.” Is this what Purgatory is like? I feel like I am trapped between heaven and hell and there is no escaping. All I want is to be with you. I cannot believe you are not here for me to kiss, to hold, to watch you grow up and play sports, to take care of when you are sick. I can’t believe just 30 days ago, I gave you a bath after you died and then had to leave you behind in a room as your body was carried out. I cannot believe the last words  you really said to me were to “Stop being sad, Mom!” That’s it. That’s all I get? It’s not good enough, Ronan and I don’t know what to do. I need you to guide me and to tell me that I can get through this because as of now, I don’t even want to. Everything hurts too much.

I’m sorry for unloading on you, little man. I talked to Doriet tonight and she is in the same place as I am. I hurt for her so much too. Esther passed away May 6th. You, May 9th. Two of the most special old souls that have ever existed. You two have brought us together and I know it is because you and Esther are together now, watching over us. You two will take care of each other just the way Doriet and I will take care of one another. By talking about you, loving each other, and going on because of the love we have for the both of you. Somehow, baby. Somehow I will get through this.

I love you Ronan. I love you to the moon and back baby boy. Sweet dreams.

xoxo

The signs and The stranger

Ronan. I had a hard day. I was missing you extra much today; if that is even possible. We woke up late as we have been doing during these lazy, beachy days. I had a phone appointment to talk to my therapist, Sarah. I walked down the boardwalk and sat on a bench to have our session. I told her how it was easier in some aspects to be here, away from home, but hard as well because of all the memories I have of you here. As I sat and talked to her, there was a little boy about your age playing in the sand right in front of me. He kept taking the sand and throwing it everywhere. So something you would have done. I sat and watched him and cried and told Sarah how much it hurts me to see things like this. How much that deserved to be you playing in the sand and throwing it everywhere. We had a good talk. We talked about how I worry about you and how much guilt comes with having you gone. Guilt for doing silly, normal things. I told her I wonder if you are watching me and can’t believe that we are all trying to do things that make us happy. I wonder if it hurts your feelings. It hurts my feelings, Ronan. I don’t like doing all the things we are doing without you. I told her as much as I would love to believe in the picture perfect world of heaven, with you dancing with angels on clouds with harps playing in the background; that I don’t. I’m having a hard time with the not knowing part. We ended our conversation much like the way friends do. She worries about me and told me to call for anything. I will talk to her next week unless I need her sooner.

After I returned back from my talk with Sarah, your Daddy took your brothers over to the Rec Center to play basketball. I crawled back into bed and slept for a couple more hours. I cried and slept and cried and slept some more. I did not want to leave my bed today. I wanted to stay in bed with your blanket and think about you. Right when I was trying to talk myself into getting out of bed, Mr. Sparkly Eyes called. I swear it is always you who tells him to call when I need a good kick in the ass. As soon as I answered he asked what was wrong. I told him, nothing, but everything. He asked if I was o.k. and then said he knows I’m not, that I’m hurting like hell. I cried for the few minutes that I talked to him but he then made me laugh by asking me if I was crying because the ocean from surfing kicked my ass yesterday. I then make some remark that it was the other way around and I kicked the ocean’s ass. He then said, “That’s my girl.” It was something so little but it made me feel better. For about 2 minutes anyway but that’s better than nothing.

Your brothers came back from basketball and were begging to go down to the pool with Jake and Carter. I said I would of course take them so we spent the afternoon down there. I absolutely love being with all 4 of those boys, Ronan. I love to watch them play and laugh and Liam and Quinn are so happy with them. I was watching them run down the boardwalk tonight and I pictured you running behind them, trying to keep up like you always did. You were always so much older than your little 3 years as you could hold your own as well as your brothers. At one point, I looked over and Carter had his arm around Quinn as they were walking together. Such a big brother thing and it made me tear up because that is so something Quinn would have done to you. You would love being here with all of your cousins. They are the sweetest kids.

After our day at the pool and brrrrrr it was freezing, we had Kenny, Stacy, Mac and Kennedy over to grill again. We all sat outside and the kids swam and we enjoyed our time together before we were all frozen solid. The 4 boys continued to jump in and out of the pool and hot tub despite the cold air. It was a good night after a hard day. Everyone is asleep now and your Daddy goes back to Phoenix tomorrow. We are going to miss him. I’ve got to figure out how to keep your brothers entertained. They are pretty easy to please so it shouldn’t be too hard:) I am lucky to be able to take such good care of them.

So, after a hard day I can tell you a few things got me though it. One being this silent auction that is going on at The Biltmore this Friday. I cannot believe all the community support and love that has come of all of this. I am in awe, speechless, and so incredibly proud of the way my son has inspired you all. This all came together in such a short amount of time and the donations and people offering to help in any way they can brings me to tears. I want to be there so badly, but I’m not sure if I can. One of the biggest reasons is emotionally I just don’t think I am ready. Ronan passed away such a short time ago and I feel as if the most important thing I need to be doing right now is just trying to mourn him, respectfully, and to take care of my twins. There is also that whole guilt thing I am dealing with. This is a totally new emotion for me, as I’ve never really felt guilty for anything in my entire life…. and I’m having a really hard time learning what to do with it. I’d be lying if I said I wouldn’t feel guilty for being at this event when it feels like such a celebration for Ronan; which it should be and  I am so thankful for that. But, I, as his grieving mama, am just not ready to celebrate him in this way yet. Please know that I would love to meet all of you who are doing so much to support Ronan’s cause and there will come a time when I can mentally be in that place, but it is not now. Everything is too fresh and raw. I will be thinking of all of you though as you all have impacted my life in a huge way. I now hear all the time about how Ronan has made you review your way of life, but please know all the love and support coming from each and every one of you is changing me as well. You make me believe in the power of selfless love and what it means to be a part of something bigger than yourself. You all make me believe that Ronan and I can change the world into a much more beautiful place. So thank you from the bottom of my heart for making this event happen all of you little busy bees out there. I just know the sky is going to be filled with the brightest stars that night.

A couple of other things that helped me though my day came in the form of some emails that I would like to share. One, I got permission to share. Her email was so sweet and I loved what she had to say. Thank you, Alicia for this. I loved hearing how your day ended. Here goes…..

Maya, Sorry to disturb your family time but I HAD to let you know what I experienced today. After a hectic day, I had to rush to pick up my girls (6 & 4 in 2 weeks) from school, rush home to get them dressed & to a reception for the team my husband coaches during his off season. We made it to the Botanical Gardens with minutes to spare. I got the kids out of the car & they took off running. Taylor (6) ran towards the venue, Ashley (3) ran straight to & through a giant mud puddle. There was mud everywhere, all over her white dress, face, hair. I was PISSED. We’re already late. Now I have to go home & change her. All that was running through my mind is how our being late would look & what people were going to say/think. I ran over to Ash & as I reached to grab her, a HUMMINGBIRD flew between us. My hand was inches from her arm & there couldn’t have been a foot of space between our chests & all of a sudden there it was. I jumped back. It hovered there for a few seconds, flew around Ash 3 times & flew off. It honestly took my breath away. I instantly though of you & Ronan & how selfish I was being. You’d do anything to have Ronan dirty some clothes & make you late. When we released the balloons for Ronan, I promised I was going to be a better mom, wife & friend. Now, here I was worrying about stuff that doesn’t matter, about people who don’t matter. I honestly believe that hummingbird was your son reminding me of that promise. With tears streaming down my face, I picked up Ash squeezed her tight & kissed her all the way back to the car. We never made it to the reception, instead we grabbed some ice cream & walked along the bay front, muddy clothes & all. Thank you, to you & Ronan for opening my eyes!

Alicia Joseph
This last email came to me tonight from a stranger but it was such a gift to me. I talked earlier about how I have been wrestling with the perfect heaven world. I swear to god, this is a sign from Ronan as my therapist, Sarah and I had a long talk about this subject today and then this email came in tonight. I cried to Sarah on the phone because I told her I’m having a hard time feeling Ronan around me. All I want is to know he is here and I’m not getting any kind of a vibe. I think right now, Ronan is trying to let me know he is here, but he is doing it through other people. Sarah had a dream about him the other night and he was smiling and waved to her. I know he is here still, I think I just have to get though this deep sadness before my mind and body will be more open to letting him in. Anyway, back to the email from the stranger that I got tonight which by the way, made me cry like a baby. Here goes….
Dear Maya:
I am just another person sucked into your blog. Yes, writing from a ridiculous unrecognizable email address.  I chose to email you privately versus posting this to your blog because I hope this message gets to you and resonates.
I lost 2 friends to cancer, sisters.  1 this past September 2010, as your baby’s fight was beginning, and her younger sister 8 years prior. Every day I ask myself how their parents go on. My friend was 38 when she passed, and her younger sister just 26. The baby and middle daughter of 3 girls.
This email is not going to ramble on about my friends but give you some brief insight on why I want to deliver this message to you. Your writing, your thought process, your profanity and your honesty reminds me so much of my dear friend and I cannot help but feel connected to you because of it.  She fought cancer for 22 years having her first diagnosis as a teenager, and bravely battling recurrence after recurrence. Her younger sister suffered for 4 years, before losing her battle.
The one thing I know my friend loathed more than anything was having others bring up comparisons of their 60 year old aunt bessie’s cancer battle, or their uncle joe’s who was 50 something, and so I do not make any comparison of their cancer, to childhood cancer, whatsoever. It would seem everyone who met her or knew her story felt compelled to discuss a friend or family members cancer fight. Enough already with it. This is your life, your reality, and your pain. There will never be any fitting comparison. Live has handed you the most cruel dreadful burden.
I am not a bible beater. This is also not a religious talk…  I get your whole dismissal of God, and though I was raised Catholic I have had so many doubts about why God would allow things like this to happen in the world.
Now that i’ve told you all of the things this email isn’t – please let me tell you what it is… I am hoping to deliver but one simple message, one which was passed onto me about “heaven” – After my friend passed away, I happened into a church where strangely enough there was a priest talking about death. Something he said, sat with me and I share it with you.
He said… heaven isn’t out there… its not up in the clouds or in some imaginary paradise. Heaven he said is a place filled with love and where you are with God. He went on to say that God is in each of us. When you lose a loved one, they are with you in the truest sense every waking hour and resting hour. I will never think of Ronan as being somewhere out there, but with you. With you Maya.
Everytime I read one of your posts about the girl from the store who said shit and caught your attention, recurring songs on your ipod, your need to run up the mountain alone to find solace, or your trip and fall on your recent run, or a flannel clad girl in the end of May who runs back and stops you in the street, I keep saying to myself… he’s there Maya, he is trying to get your attention to let you know he is right there. No one on earth has more moments of serendipity as you have since Ronan passed away.
He lives inside you, in a place where he can feel every bit of love that you could never express to him through mere words, or even actions on this earth. The place you unknowingly created for him, heaven.  Everything inside you that aches from loving him that is where he is. He is not hurting, not suffering. That priest also said that you can go so deeply into meditation that you can talk to that loved one … in the place where you truly can share your feelings, fears, unspoken words, and you will feel them communicate back with you if you get better at meditating deeply, and finding them. When you take your runs and midnight swims and you’ve beaten your body to a pulp so that your mind is sort of blank, you are getting close to that place where you can find him, at least I think you are. Its a place where you can meditate and be alone with him and ask him to talk to you. Do you think I am crazy? Perhaps.
When you worry that Ronan is out there and you cannot think he is safe or is he wandering around without you.. never never never believe that.  Ronan is trying so hard to get your attention… perhaps even through emails, postings, and blogs from random people.  Every time I read something new from you, I believe it even more. I think I have to point it out to you.
Fuck this life that you cannot kiss his sweet lips and hug him and giggle with him, or cry with him. Fuck life that you never had the chance to fight on for years even when you were prepared to. Life is wretched and miserable and I hate your families pain. FU Cancer. I am not one of these people who thinks Ronan wanted to be “with God”. When you said he wanted to be in AZ with his family. I believe that wholeheartedly. I believe that is why he is still with you. He is not about to leave. He will always be your perfect gorgeous baby boy, and I know you will always mourn and grieve his loss as long as you shall live.
For years my friend had dreams of her sister who passed away before her. The day before she died she told me that she had the most vivid dream that her sister was well, and running and laughing, and asking her to catch her and come with her. She was chasing her sister in the dream, and couldn’t catch her. Her sister told her nothing was hurting anymore.
My friend told me it was the most beautiful dream and the one she couldn’t shake because it was so real. None of her prior dreams she said had felt so real. Even the dreams that for years had her walking up with tear soaked pillows. My friend passed away the very next day. I pray those sisters are together and have no pain, and no suffering.
I am sure you are sick of cliché’s and BS. If you decide this is the biggest load of crap and you want to post it and tell others to keep this shit to themselves then I get that too.  But there is a part of me that hopes and prays you will be able to find my message makes sense to you.
When you told Ronan, to come with you and leave that place, he did it. He went with you and that is where he has stayed and where he will stay. Your soul and his will be locked together for eternity. Keep doing what you are doing. Keep writing to him, keep working towards your goal with his foundation to keep him alive, to bring hope to others, to teach everyone about undying love and devotion. You and Ronan speak to masses of people and can make a difference in this world. He has impacted more people in his short life than I could dream of in my 40 years on this earth.  I wish you so much inner peace and the ability to connect again with Ronan in a much deeper spiritual way. I hope you feel him with you, truly feel his presence. I hope he keeps giving you little signs and that you can recognize them.
-A stranger
Well dear stranger… I wish I knew who you were because your words hit me harder than anything that I have been told so far. I believe everything you just said to me and it makes absolute sense. Ronan’s heaven is with me, with his family, and even with all of you. He has left me little signs everywhere, I just didn’t know how true they were until now. The hardest part of this is not being able to physically see my baby boy anymore, not to be able to touch or hold him. I will never get over that but I have to believe his spirit is still here right next to me and someday, I will meet him on the other side. When it is my time to go. Until then, I will be sad for the rest of my life but I know that I will find a new happy as well. In the kindness of strangers, the love from my family and friends, and pushing forward to keep Ronan’s story alive so we can help other children. I want Ronan to be the voice for children with cancer everywhere. He would never give up this fight so I will do whatever it takes to support him. I couldn’t do this without all of you and I do believe the more people we have on our side, the more we are going to be able to do. So thank you again, for believing in my baby, for loving your beautiful, “perfect,” lives enough to know that Ronan deserved to have that too. And since he was robbed of it, the fact that you are all willing to continue to fight so hard for him with me says so much about the kind of people you are. I am honored to have you with us so we can continue on Ronan’s journey. I love him so much. I miss him so much. And I would give anything to have him back. Somedays, I swear I am going to just die from sadness but then I force myself to think about everything I have that is so beautiful in my life. I have to make a difference for everyone around me; not just Ronan. Liam and Quinn deserve to grow up and watch how if you live a life full of fight, passion, and love…. you can survive and do anything you want. I promise to make them proud of me too, by living our life as if Ronan is still here. By laughing about him, by talking to him, by celebrating him, by loving him forever.
Alright my sweet friends. I’m a snotty mess who needs to calm herself down. I wish tonight what I wish for every night. Blessings for all of you and sweet dreams of Ronan. He is safe… I know this now thanks to the stranger:) Tonight, I will fall asleep knowing that he is not roaming the streets of Vegas. Although, he would have made a very nice newest member of “The Wolfpack.”
G’night my sweet boy, Ronan. Tonight and every night, I’ll fall asleep with you in my heart.
xoxo

And a very special thank you to my Silent Auction Fairy Godmother. Yes, you know who you are. I’m telling you right now, that Ronan is going to watch over you everyday, for the rest of your life. Your generosity and pure love for someone you’ve never even met is unheard of in this day and age. It’s people like you that make this world such an amazing place. Thank you, my dear friend that I hope to meet someday 🙂

The next person that tells me Ronan wants to go home, to heaven, can piss off

Holy Fuck. How did I get here? I’m at The Ryan House; the most beautiful place we have been so far on this journey because my son is going to die? And everybody knows this except me? Am I in that movie, “The Truman Show,” where everything is just pretend and I’m some experiment being watched to see how I’ll react to everything? Please, please, please, somebody tell me that’s the case. I don’t think it’s even hit me what is going on, why we are here, and why everybody has been crying, until now. Until I stepped outside tonight to get Woody some things from his car and in the room across from us was a baby who was on the verge of her last breath and I stood and watched while it was happening. The door was open and I could not look away. The nurses were crying, parents, family, everyone was hovering over this baby. They were preparing for her to take her last breath. In that room, I saw myself, huddled over Ronan, begging him not to go. Is that my future? Does everybody know this except me? Is this the reason that The Ryan House was full of my friends and family today, and when they all came into Ronan’s room they could not hide their tears. Am I the only one who thinks this is not going to happen?? Even though I am hearing whispers of he has days left. Who are they talking about? Couldn’t possibly be Ronan. He gave me the biggest smile today and told me he loved me to the moon and back. So what if he cannot walk anymore because his legs hurt so badly. I can fix that with Radiation, right? Just like I fixed his arm. So what if he is not wanting to eat anymore, I can fix that too with his all his favorite things like Strawberries and Whipped Cream. I can get him to eat for me. I sent Woody and Fernanda a list of people, resources, other doctors to call today. Woody has been on the phone all day. I’m not accepting this until I hear there is nothing more to do from 100 different people. I’m not giving up. I am his mom, I can fix anything. That is my job and I refuse to fail.

I have not been outside in a couple of days I think. Tonight, I found myself on the patio, curled up on the phone, bawling to my Mr. Sparkly Eyes. I don’t think I screamed, but I remember sobbing and listening to him cry with me. I told him over and over that I cannot have Ro leave me, I cannot live without him, please make it go away. He told me I could yell at him, how sorry he was, and begged me to sleep as I cannot remember the last time I really have. It’s been a couple of days I think. I told him how could I sleep, how could I possibly close my eyes, what if I missed Ronan’s last breath?? I will never forgive myself. I’m not going to miss any time that I have left with him although I forced myself to come outside and write tonight while Woody sits with Ro. You see, if I didn’t, I was on the verge of packing up all of our stuff and getting Ronan out of here. Maybe if I take him away from The Ryan House, he won’t die. My thoughts are not rational, but they seem realistic to me and I could seriously see myself grabbing him and never looking back. I don’t want him to die here. Even though everyone is insisting this is where we should be. I want to be home with him, where he is safe and none of this is real. Being here, magnifies everything by a billion. I don’t like the look of all of the sweet nurses, doctors, and whomever else has been hovering about. They all have the same look of pity, sadness, and no hope. I get the feeling they don’t see miracles happen very often with children that come in here with cancer. Why can’t Ronan be that miracle? Why is that asking too much? We are nice people, we deserve a happy ending. There will be no happy ending of this story if my baby is ripped out of my arms. What will they do with him? Where will they take him? I’m not letting him go. They will have to pry my arms off of him with a fucking bulldozer. I’m not letting him go. Call the fucking psych ward because that’s where I am going to end up if this all goes down the way everyone thinks it is going to.

“Everything happens for a reason.” BULLSHIT. “You were given this because you were strong enough to handle this.” BULLSHIT. “God has a greater plan for Ronan.” Bullshit. “Ronan wants to go home, where he belongs, to Heaven.” MOTHER FUCKING BULLSHIT. Who the fuck came up with these sayings because the next person I hear say them to me is going to get punched in the face. They may be true if death is not outcome of this. But if it is, then I am going to write down those sayings on a piece of paper and burn them to the ground. Please think before you speak those words. They are the sickest things I have ever heard. Ronan Sean Thompson does not want to go home to heaven where he belongs. I can guarantee you with my life that he wants to stay at his home, in Phoenix, Arizona with the best mommy, daddy, and brothers alive.

I somehow stayed so strong today, even with people buzzing in and out, wiping the tears from their eyes. Stacy, Pam, Heidi, Tiffany, Jennifer, Sharon, Marcia, Auntie Karen, Sister Mary, Dr. Campbell, Katie, Macy, Sarah, Fernanda, Nana, Papa Jim, Aubrey….. they were all here. I think Niki, Heidi and Christy came by too, but I cannot remember seeing them. I smiled and remember saying to New York Miss Macy, “No tears, my dear.” She looked like she could have cried a pool of water right there in front of me. I’m so confused. I must be in shock still. I don’t remember much else about today except for sitting in bed, and taking care of Ronan. I remember a few people coming in and out. I remember eating my one thing that I have eaten in a week, my favorite things, chips and salsa and I remember throwing it up. I remember holding Quinn on my lap and watching him cry as I tried to explain to him as little as possible what was going on. He tried so hard to not cry, but I told him how crying was so good for us and how we cannot keep our feelings bottled up. And now I sit here. With Quinn and Woody inside, and Fernanda is here too with her overnight back so I can have a break and maybe sleep while she watches Ronan for me. I don’t really know what is going on. I know I have the most amazing friends surrounding me but somehow I can only find the courage to see a few faces.

I want to go home but nobody seems to think that’s a good idea. I don’t know what to do as the twins and the way they remember everything is the most important to me, but I also want to respect Ronan and take him home to be the only place he wants to be. I don’t know if I want strangers surrounding him if for some crazy reason he has to leave me. I just want him in my safe bed, in my safe house, the place he loves more than anywhere. I want that not only for myself, but for him as well. I’ve been so open and honest about everything and not the least bit private, but now I want to protect him from strangers hovering about. I don’t want those faces around my baby as he takes his last breaths. I feel a jailbreak coming on. And Ronan has his pistols in his hands to bust us out. Not that we would really need them, because I know the people here are so respectful of what you want to do. But a little cowboy action never hurt anyone.

That is all for tonight as I have officially lost my mind due to lack of sleep and oh, just the little fact that my son has cancer and I am just supposed to sit back and watch him die. FUCK YOU WORLD.

But I love you all as always, as long as you don’t say any of those idiotic things I mentioned above to me. Even if you think them, please don’t say them. They don’t give me strength at all. They even piss my husband off and it takes a lot to get him pissed.

G’nite all you cowboys out there. Sweet dreams.

xoxo

My sweet friend, Charisma sent this to me from her friend, Amber. I love it. Bittersweet. I love you, CC. I love you, Amber and I don’t even know you.

Ronan. Here’s a little prayer for Ronan,  beautiful eyes. Seeing the other side. Courage beyond any man.
He will be there. In the trees. In the leaves. It will make her live life, hate life, love life beyond…
Rebirth. Always more chances.
Those eyes. Those eyes. Those eyes.
Fabulous eyes.
We will light a candle at dinner for Ronan tonight and celebrate life.
~Amber

Blowing kisses to the heavens above

Today, was a great day. Woody worked for a few hours and I took care of Ronan. We spent the day getting him to do normal things like walk around, pee, and drink. He is in a lot of pain; even though he won’t really tell us. He has such a high pain tolerance, but I can tell by the look in his eyes that he is hurting. We are working on getting his lungs to function as well as they are supposed to be. This means he is doing treatments like blowing bubbles and blowing into a little machine for us. He is wiped out from today and his demeanor has been very serious and business like. He knows he has a job to do.

After Woody was finished working, he came back to Sloan. Dr. Kusher stopped by for a visit and I have totally fallen in love with that man. (Not really, but you get what I am saying) First of all, to say the man is a genius is an understatment. Not only is he brilliant, caring, funny, and nice… he also really cares about his patients their parents. He stood and talked with Woody for a good 30 minutes about Ronan and he is elated at the way he is responding to treatment. He told us that Sloan is always an open door to us should we choose to come back her for radiation or whatever else. I talked to him a little bit about running. He runs in Central Park every morning. A.M.A.Z.I.N.G. Woody asked questions and Dr. Kusher gave him an answer to everything. He also said we could take Ronan home this weekend since he is doing so well and do Round 6 of chemo at PCH. We have decided to just stay here and finish it. I want to make sure Ronan is totally healed before heading back to AZ and taking him home on Saturday, just to check him in to PCH for Round 6 just does not make much sense. We may as well just stay here and get it over with so that way, when Ronan can go home, he can actually stay home for awhile.

After Dr. Kusher left, I ran out to go back to RMH. I put on my running clothes and ran to Central Park in the dark (sorry Marisa… stop with the panic attacks;) I got in about 8 miles. Tonight, while I was running I felt like such a weight had been lifted off of my shoulders. I looked up at the sky, said thank you and blew kisses to the heavens above. It was the most gorgeous run. To be in the middle of a park, surrounded by beautiful buildings and lights in the distance; and for such a busy city, my run was so quiet and peaceful. It was heaven on earth tonight. I am going to miss New York so much. This city has been such a positive experience for all of us; I feel like a new person and I know Ronan does as well.

After I ran I went back to RMH, showered and packed my bag for the night. Ro is asleep and Woo is playing on his laptop. I am going to snuggle up to my hubby now and watch a movie. What a perfect way to end this perfect day.