Tag: god

Grief! It’s a tricky mo’ fo!

Ronan. Grief is a tricky thing. It’s one of the thousands of things in life that I will never understand because it is that out of my control. I never know when it is going to be an o.k. day., a really bad day, a paralyzing day, a “crazy,” day. I never know who I am waking up to in the mornings, who I am having breakfast with, who I am showering with, who I am folding laundry with, who I am sleeping with. For somebody that has lived with so much consistency in their life for so long, the living this new life of never knowing is exhausting. But I keep rolling with the punches.

Guess what I feel like today? The really bad mama/wife alter ego. Guess what, Ronan. Today, I don’t want to be a mom or wife at all. Try living with that guilt. I never felt like this before losing you. Now, I feel like this all the time. I want to run away and never look back. I want to be alone with my pain. I don’t want the comfort from your daddy or brothers and I don’t want to comfort them. Does that make me evil and a bad person? Because that’s the way it feels. All I want is to take my pain of losing/missing you and run away and keep it to myself. I want to live in the middle of some dark, dreary forest where it rains all of the time and live in a little house, all alone. Just with you and our memories. I don’t want to see our old friends. I want everyone to go away. But you know how this would end if I actually did this? I would end up killing myself. Sylvia Plath style. Her death was so dramatic, yet it was what she wanted and the way she wanted it. I respect that. I’ve always loved that woman.

I think about death all the time. It doesn’t scare me. It didn’t scare you which in turn means that it is something that I don’t get to be afraid of either. When it’s my time, it’s my time. I know that life is too short to sit around an worry about it. So I don’t. I think about it instead. You know what the 2 things that are guaranteed in life, Ronan? Death and this exact moment. Not 10 minutes from now, not 10 hours from now, 10 days from now, or even 10 years. I’m not going to worry about the fucking future when the future is a lie because it is not guaranteed. I am going to worry about this moment. I am going to put some ideas out there and if they happen, great. But if I die before they do, at least I’ll know I put some things out into this world. At least I’ll know, I tried. I’m going to say the things I fucking want to say, and regret NOTHING. As long as I stay true to you and me…… regrets are not going to happen. I’m DONE. Done worrying about what the others out there, think. The others of the world can fuck off. I don’t care who has a fucking problem with my GOD is an ASSHOLE SHIT. If you are going to judge me for that, then you can FUCK OFF too. There is no God out there…. the good and all mighty powerful God who would do this to parents. Who would do this, to you. So judge me all you want. Keep living in your little bubble and lock your doors, so I don’t turn your kids into Satan loving little devils. If you really think this about me, due to what you read, then you don’t know me at all. You are being judgmental and due to that alone, please stay away. You know the kinds of people that I appreciate so much in this life? The parents. The parents who read this, yet they still invite Liam and Quinn over for play dates and they still let their kids come over for play dates at our house. Even if they do not know me that well… they have taken the time to get to know my children and they see two of the kindest, most gentle souls so they know that no matter what I write….. everything is going to be o.k. They trust me; even though they do not really know me. They are the parents, who know I am in agonizing pain, but who let my children be a reflection of me. This means everything to me. Everything, Ronan. I am a good mom. I am a good person. This is my outlet where I can scream, cuss, and cry because I don’t always get to act this way in the real world. In the real world, I tend to remain calm, cool, and collected. In the real world, I keep it together and for the most part, I am able to act like the “normal,” mama under these hellish circumstances. Hell is real alright but all the devils are here. Tell me I am going to HELL and I will never see my child again. This is HELL. I am living in HELL, right now. I know in my heart, that I will see you again, Ro. I know this and this is the only thing I’m answering to in this life.

Today, I don’t even know what I really did. I think I stayed home which may actually become the death of me. I think I could die from the pain alone of being in our house, without hearing the little pitter patter of your feet and the sound of your squeaky voice, yelling for me…. your giggles. The best giggles in the world. I stayed home and played the domestic good little wife roll that is now like nails on chalkboard, but has to be done. I folded a fuckton of laundry. I licked a lot of envelopes. I got a little last minute text message from my newest/oldest yeah I feel like I’ve known you forever friend, but I’ve never actually spent any time with you that said, “Do you need some help with some things?” I said, “YEAH! Do you fold laundry?!” She said she totally did and within the hour she was in my house where we didn’t actually fold laundry, but we licked envelopes and wrote down lists of shit to get done ideas instead. It was a highly unorganized fly by the seat of your pants afternoon where you don’t know what do expect but that’s always how the BEST things, come about. We have lists of a lot of things that have been piling up in my head that I just don’t know what to do with. Things that I am passionate about, getting done. We came up with some new ideas too. We talked about the importance of keeping everything we do in regards to your foundation, true to you. Trust me, Ro. I know how pissed you would be about me throwing an event full of fancy evening gowns and diamonds. Kinda wasn’t your thing. We’ve got some much better ideas in store.

After our productive day of many lists, I picked up this new little friend of mine for dinner. I got to meet her little boy and it was love at first sight. I only got to stay and hang with him for a few minutes but I really wanted to stay and play with him, for hours. I wanted to get lost in his little world and let everything else, slip away. Maybe next time:) Margarita, took me to a really dangerous part of of the hood, for Mexican food. Well, not really but we pretended like it was. It was pretty dangerous having to watch the little blond boy, skip around our table while we were trying to eat. It was pretty dangerous of us to cry over our food and talk about all this “Ronan is in heaven, playing with puppy dogs bullshit.” I’ll say it again, like I always do. I don’t care if this really is the case. The fact of the matter is, you are not with me, like you should be. That in turn, makes everything so wrong. We took our danger crusade to the neighborhood Ross and browsed the aisles of the best infomercial products you could buy, dangerous chemical filled bubble bath, and some of the best ugly dresses I’ve ever seen. Of course we were walking down the aisle full of random nothingness and some little Star Wars action figures were just staring at me. They were all alone, among a bunch of household items. I grabbed them and told, Margarita, I had to buy them for Super Nate. She then goes, “Well they are kind of just sitting there, screaming at you to buy them.” Yes indeed they were. How could I ignore that??? I couldn’t so I took them home with me instead.

I came home to your brothers all curled up on the couch, watching a Pearl Jam documentary on T.V. I snuggled on the couch with Quinn who is still, stuck to me like glue. I mumbled to your daddy that the lead singer of Pearl Jam, Eddie Vedder, was my long lost soul mate in life. He likes to use the word “Fuck,” a lot too and is all about following his heart while breaking the rules. I’ve always been a huge Eddie fan. And the fact that he is such good friends with your favorite, Neil Young is the icing on the cake. I think I need to work on getting those two to do a Rockstar Ronan Rock Concert for you. It’s already on my list, baby boy. I’m going to make it happen. I can see the line up now…….

So, baby boy. Guess what? I have not been taking my Ambien to sleep at night. Guess what I have come to find out. That if I snuggle up in your bed at night, I can actually sleep for hours…. uninterrupted. Last night I dreamed about dolphins all night long. I was in the ocean, holding a baby dolphin and it was so peaceful. No doubt, the baby dolphin was meant to be you. I’ll never forget our summer and how the dolphins would just appear every single time I went out to the beach. I know that was you, letting me know you are around. So last night, I slept in your bed and dreamt of all things peaceful. I cannot remember the last time that has happened. Thank you for that. It’s early and I need to get moving this morning. I miss you. I love you. I hope you are safe.

xoxo

Dear Lovely Little Blog Readers,

I am putting this out into this big, beautiful world that I know exists. If anybody knows of any office space that may be available free of charge…. I so need it. I cannot continue to run this foundation out of my house, alone. It’s too quiet. It’s too sad. And his room, full of his toys is just down the hall from my dining room where I often sit, crying, trying to get things done. Yesterday, my friend came over to help me stuff envelopes and pointed out that me sitting at home, doing these things alone was not healthy. I knew this, but I never thought to ask for anything else because this is just the way it has to be. She quietly told me that I should look around to see if anyone has any empty office space they want to let me use. I would be a really good, quiet tenant. I am really super clean and I smell good, so I have those two things going for me. I don’t really run around screaming obscenities unless provoked so for the most part, I’m a calm collected girl. I have really good references if you need them;) If anybody knows of anything, can you email me at mayawoody@gmail.com. But I don’t want to pay rent. I don’t want any overhead. I would never feel right about taking money out of Ronan’s Foundation, to run things/advertise/etc….. I am not using his money, this way. So if anybody, just has some empty space they know about…. that is just sitting; I’m your girl. I would be SO thankful. I may not end up like Sylvia Plath; with my head in the oven.

Thanks lovies. Oh yeah. Space needs to be in AZ:) I mean Transylvania would be awesome… but the Phoenix area is more realistic.

The Stages of Life without you

Ronan. Productive days are good for me. Days where I am busy, have lots of tasks at hand, and it forces me to feel like I have a bit of a purpose in this life without you. I went this a.m. to meet your Mimi so we could have a meeting with our Foundation CPA. I wanted to meet her and go over a few questions I had. It was a good, productive meeting. Afterwords, I headed out to North Scottsdale to see the Good Doctor. I like to check in with him every couple of months. I told him that I had stopped taking my Zoloft. He asked why and I told him that I was tired of being numb. He said that was a good reason and asked all the usual questions to make sure that I am actually doing alright without it. I told him that I wanted to deal with the pain of losing you, and to actually feel it; even as much as it hurts. We talked about a lot of different things. I told him about the sleep issues I’m still having in a major way and how I’ve taken my Ambien the past couple of nights. I don’t want to take that crap, but I also know that sometimes I need a break from all of this pain. Trying to sleep on my own, with only Melatonin, is just not working. I’m still going to continue to try, but I can only take so much. I hope one day I’ll be at peace with sleeping again. I really miss it.

After my visit with the Good Doctor, I came home and was full of way too much energy/anxiety. I threw on my clothes and drove to Camelback Mountain. I met my Frienemy, Inferno Fuckwad Bob there. I hiked up that mountain, as fast as I could today. It was only 102 out. Just as I was tackling the last part of it, I felt the need to stop and take a break. But then the voices in my head, screamed at me otherwise. They told me to keep going, to push myself harder, because you were waiting at the top for me. I could have been suffering from heat stroke, but I didn’t care. In my mind, I had to keep going, to get to you. I ignored the waves of nausea in my stomach, and continued to the top where I think I almost passed out. I sat and took a lot of deep breaths and drank my water. There were a couple of other people as crazy as me, who were there as well. They were there for pure pleasure though. Not because they know anything about Inferno Fuckwad Bob. I sat and listened to the happy conversations around me and almost got lost in the couples world; while they were snapping pictures of each other and were beaming with excitement about making it to the top. I wished to be that girl that I used to be today….. so giddy and proud of hiking Camelback. I remembered that girl today. The one who used to hike Camelback for pure pleasure, not because she feeds off of the pain. That girl seemed so young, so innocent, and so carefree. I missed that girl.  I wished for a rewind button, before you were sick. I wished so many things today at the top of that mountain. None of them came true.

Somebody asked me the other day, where I was in the stages of Grief. I am aware of the stages, but the question caught me off guard. Stages? I have to follow the stages? I didn’t know how to answer. It seemed so strange to me, as if there is a formula to follow after losing you. I am not like everyone else because everyone else did not have YOU, as there son. I guess I’ve never really taken the time to sit down and process the “Stages.”  I took a look at them the other day. They make sense, but I don’t necessarily think there is an order that I am following them in. I have felt these things, since you were diagnosed. I feel these things, 100 times a day. I don’t think the things below should be named the “Stages of Grief.” It should be written as a manual on, “Welcome to your new life, after losing your child.”

It should also have a side note that says, “Good luck with that. Doesn’t it fucking suck?” Here are the “Stages,” below. Just in case any of you are curious.

Denial

This first stage of grieving helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle.

As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface.

Anger

Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, yourself and your loved one who died, but also to God. You may ask, “Where is God in this?

Underneath anger is pain, your pain. It is natural to feel deserted and abandoned, but we live in a society that fears anger. Anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss. At first grief feels like being lost at sea: no connection to anything. Then you get angry at someone, maybe a person who didn’t attend the funeral, maybe a person who isn’t around, maybe a person who is different now that your loved one has died. Suddenly you have a structure – – your anger toward them. The anger becomes a bridge over the open sea, a connection from you to them. It is something to hold onto; and a connection made from the strength of anger feels better than nothing.We usually know more about suppressing anger than feeling it. The anger is just another indication of the intensity of your love.

Bargaining

Before a loss, it seems like you will do anything if only your loved one would be spared. “Please God, ” you bargain, “I will never be angry at my wife again if you’ll just let her live.” After a loss, bargaining may take the form of a temporary truce. “What if I devote the rest of my life to helping others. Then can I wake up and realize this has all been a bad dream?”

We become lost in a maze of “If only…” or “What if…” statements. We want life returned to what is was; we want our loved one restored. We want to go back in time: find the tumor sooner, recognize the illness more quickly, stop the accident from happening…if only, if only, if only. Guilt is often bargaining’s companion. The “if onlys” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain. We will do anything not to feel the pain of this loss. We remain in the past, trying to negotiate our way out of the hurt. People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage in a linear fashion. We may feel one, then another and back again to the first one.

Depression

After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a great loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on alone? Why go on at all? Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. The first question to ask yourself is whether or not the situation you’re in is actually depressing. The loss of a loved one is a very depressing situation, and depression is a normal and appropriate response. To not experience depression after a loved one dies would be unusual. When a loss fully settles in your soul, the realization that your loved one didn’t get better this time and is not coming back is understandably depressing. If grief is a process of healing, then depression is one of the many necessary steps along the way.

Acceptance

Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Most people don’t ever feel OK or all right about the loss of a loved one. This stage is about accepting the reality that our loved one is physically gone and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. We must try to live now in a world where our loved one is missing. In resisting this new norm, at first many people want to maintain life as it was before a loved one died. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganize roles, re-assign them to others or take them on ourselves.

Finding acceptance may be just having more good days than bad ones. As we begin to live again and enjoy our life, we often feel that in doing so, we are betraying our loved one. We can never replace what has been lost, but we can make new connections, new meaningful relationships, new inter-dependencies. Instead of denying our feelings, we listen to our needs; we move, we change, we grow, we evolve. We may start to reach out to others and become involved in their lives. We invest in our friendships and in our relationship with ourselves. We begin to live again, but we cannot do so until we have given grief its time.

So, there you have it, Ro. The Stages of Grief. I do think it was beautifully written. I think it was written by Dr. J’s friend, Elisabeth Kubler-Ross. I’m reading her book now, “On Children and Death.” She was a good friend of Dr. J’s which tells me she is worthy of me reading her book. I’m not too far into it as I am having a hard time staying focused on it as it is one of the many pile of books next to my bed. I want to finish this one first, but I have some homework that I am trying to get done before I meet up with of few of our lovelies next month to go over your Foundation. Homework that requires research and not enough hours in the day.

Ro baby. I spent the rest of the day, playing the good mama role, really well. Except I didn’t cook dinner but one of our dolls dropped off dinner instead. Thanks, Katie. You saved me tonight<3<3<3

Time to try to sleep, Ro. I’m getting up early to run with Samya in the morning. Miss you so much. I love you and hope you are safe. Sweet dreams, Baby Doll.

xoxo

Moneyball, Liz. I told you it was a word!

Ronan. Hi my lovey. Missed you so much today. It was another long day. My mind is drawing a blank at how it even started. I remember now. Woke up, threw on some clothes and ran into town to go to the grocery store. Heidi, Luke and Lily were coming over from Mission to spend the day with us. I got some food at the store for lunch. They arrived around noon and we all headed out to the beach for the day. You would be proud of me as I didn’t spend the day hiding. I spent it enjoying being with your family instead. It’s been much too long since we’ve enjoyed your cousins. It was just what we all needed today. We played in the sand and I actually enjoyed the day as much as I could. At one point, Luke was playing football with your daddy. It made me miss you so much. I miss watching you play. You loved to play with Luke so much.

I had two different women approach me at the beach today just to say hello and they wanted to let me know how much you have changed their lives. It was very sweet to hear and as always, I was so thankful for the kind words that they had to say. I hope you will continue to inspire people everywhere and for as long as I live, I will help you do this. It is one of the many gifts you have left behind and I am honored to carry it on for you, baby boy.

After our day at the beach and pool, we went down to pack up our things. We were gathering up all of our sand toys, boogie boards, towels, beach chairs, etc…. when the dolphins appeared. We all watched them together and Luke kept yelling out, “It’s Ronan, it’s Ronan!” It was pretty amazing that just as we were getting ready to leave, that they came out just in time for us to see them. I’m going to miss those dolphins when we return back to Phoenix. They have been something that I so look forward too. I’m just hoping you’ll continue to leave me little signs, everywhere.

Your daddy had a night out with the boys. He took Luke, Quinn and Liam to a Padres game. They had a blast and Luke caught a ball. They stayed for the entire game, which I didn’t think they would do, but they did as they ended up having a really good time. I spent some time with Liz. We went out to dinner, walked around, attempted to go play Lazer Tag, but as soon as we got there, it was closing….. we drove around, got Fro Yo, and basically just spent some time together. We talked a lot about you, about life, about God, heaven, religion, etc. She has questions now about everything. I’m glad. She is insightful, yet thoughtful about the things in life that nobody knows the answers to. I appreciate that so much.

We are leaving to go back to Phoenix in a few days. I’m nervous and anxious about it. So much reality there that I have avoided. It’s hard to imagine going back to our life before all of this. I don’t have a choice though. I cannot avoid this life without you forever. I am thankful that we spent your last week at The Ryan House and that is where you passed away. I know I struggled with this decision forever, as I just wanted you at home, but I think now the right decision was made. The thought of having to go back to our house, with that memory of you there, would have not been good. It is going to be hard enough going back there with all the good memories I have. I know everything in my life will continue to feel empty. I cringe at the thought of the silence that will fill most of my days. I cringe at the thought of your empty bedroom, full of all of your things. My mind is still in denial that you are truly gone. It’s still in protective mode because when the thought of you, not being here, sets in, my heart drops and my body just wants to sink to the floor. I wonder if there will ever come a day when I do not physically feel this way.

Oh, Pandora. How I love you. I was just sitting here thinking about you and our Mr. Sparkly Eyes. The song randomly came on Pandora and that is the song for the both of you. It is one of my absolute favorites and always makes me cry, but makes me feel peaceful as well. I love to put this song on repeat and run to it over and over. I’ll put it on your you tube lullaby tonight. You loved that song so much too.

Everyone is asleep now as it is late. Luck is sleeping over tonight. We gave him your GiGi to sleep with. He seemed so excited about that. He loves you so much. I talked to Liz tonight about Luke and how I feel like he is so different than most boys his age, but how he is still so much the same. He is different in the ways that he really observes things that are going on around him, and he is a deep, thoughtful thinker and speaker. Everything that comes out of his mouth is straight from his heart and soul. I love that about him so much. I know the time he spent with you at The Ryan House was really hard on him, but it was so special. It was the last time I heard you laugh. Luke was doing something crazy and silly and you laughed that great laugh of yours. Gosh, you had the BEST laugh, Ro. I am so glad it was Luke who was the one to bring it out of you. It will forever be a beautiful memory we will cherish.

Tomorrow, we are spending the day in Mission with your cousins. The boys are excited to go and do something off of the island for a day. I’m excited to do something different and to have a reason to get out of bed. I know I have 3 very important reasons right in front of me all the time, Ro. But sometimes I am just so sad, that it isn’t enough. Sometimes I need to have a plan for the day ahead of me so I know I don’t have a choice. I need consistency, a routine, a plan in place. I know what will happen on the days that I am hurting so badly from missing you. I expect to have them, but the less I have the better. I have to go back to being a functioning mom. I’ve been getting by, but I am not even close to the mother I was before all of this. I’m still trying to find my bearings. I’m still trying to come out of this fog. But hey, at least I’m still trying, right. I’ll sleep on that tonight.

I love you my little man. I miss you so much and hope you are safe. Goodnight, Ro baby. Sweet dreams.

xoxo

Barley Breathing

Ronan. Everything with you ended too quickly. I thought we would have so much time left together. We had so many plans to fight so long and so hard for you; until we got you better. We had plans for your brothers to spend the summer in NYC with us while we went through your treatments. I’ll never fully grasp how quickly things spiraled out of control. How quickly the tides turned and before I knew it your little life had slipped from my hands. I’d give anything to have you still here; fighting and all. Just to hear you laugh, to see your smile, to have you sleeping next to me. I still cannot fully sit back and think about our reality. I feel like a fish out of water and I have to fight for every breath I take. I’ve never had to focus on breathing in my life and now this takes up most of my day as I often feel like I am not getting enough oxygen to my brain. I now have to sit and making sure I am not going to suffocate and concentrate on getting air into my lungs. This is what it feels like to have you gone. Every second of the day I feel either numb or in so much pain that my body shakes and everything hurts.

Now that you are gone, I watch videos of you on my computer. I touch the screen, hoping that you will come out of my screen and magically appear in my room. You don’t. Instead I am flooded with hysterical sobbing that I cannot control. I don’t fight it. I take this time during the day to miss you so badly that I am inconsolable. I do this alone when nobody else is here. It’s better for me that way. I’m not ready to grieve for you in front of anyone else the way that I grieve for you alone. It is too painful for anyone else to see.

Yesterday, we did the usual stuff around here. We filled our day with errands and organizing things. I walked past your room and noticed your door was closed. I thought for a second it was you playing in your room, but then I remembered that you are gone. I opened up your door and peeked inside. It wasn’t you playing at all. It was Liam. He was sitting on your floor, alone, playing with your Star Wars guys. I cannot even think about this story without it destroying me. I asked him if he was o.k. He said he was, he was just playing. I let him be. I couldn’t even go and sit on the floor to be with him. I wish I could have, but I’m not ready for your room yet.

I went to breakfast with Tricia, Danille, Julie and Marisa yesterday. We sat at Taylors. The girls ate. I nibbled on some of Trish’s omelette and some of Danielle’s bagel. I sat with the girls and ended up crying about you, telling them that I just don’t know how we are all going to be alright. I wish I could say they had some words of wisdom; but they didn’t. And I’m glad they didn’t. That just goes to show what true friends they are. They know there are no words of wisdom for this and they know not to bullshit me. So instead, they sat and listened to me and got teary eyed instead. That was all I needed from them. After breakfast, I went with Danielle and Marisa to Kirland. All the book stores have disappeared around here so we had to go to the one out there. I wanted to get Liam and Quinn some chapter books to read for the summer. I missed you in the book store. I missed you as we walked past the fountain at Kirland. I remembered how the two of us would go there and I would let you run around in the water. I remembered how amazingly tan your skin would get from the sun. My little brown bear. So happy and carefree.

Liam and Quinn had a sleepover at Luca’s last night. Your daddy and I went out for Sushi with Uncle Jay, Charlene, Kenny and Stacy. I was sitting there, trying to enjoy the ambiance as hard as I possibly could. Good people, food, and atmosphere. I looked up and saw one of the doctors from PCH that works in the clinic. I cannot remember her name; but I’ll never forget her face. She was supposed to help us through transplant. I told you that you are everywhere. Stacy was trying to talk to me and I told her I couldn’t concentrate as I had just seen somebody from PCH. I needed a minute to compose myself and to talk myself out of running out of the restaurant screaming bloody murder. I sat and told Stacy how even sitting at dinner just seemed wrong. How could I be out, trying to do something normal like eating dinner when everything is wrong? To do something even remotely enjoyable feels like I am betraying you. I am hurting so badly inside that I should not be out in public at all. I feel like I should be standing in my imaginary hole in my backyard that somebody needs to dig for me so I can hide in it forever. I don’t want to be out, trying to eat sushi. But I know if I don’t, that is when the real trouble will begin. I know this so I talk myself into being brave and doing the things that are now so awkward and wrong to me. I do this to keep some sense of normalcy for you Daddy. So I can sit next to him in the booth and hold his hand. So I can make him feel like we are a part of something normal, together. I do this but I don’t like it. I wonder if I will ever be able to breathe normally again.  I wonder a lot of things, baby.

That is all I can write tonight as I need my mind to shut off tonight. I’m having lots of anxiety getting your brothers ready for summer. I have to pull it together for them as they need me more than ever. I know this.

G’nite my little man. I love you. I miss you. Sweet dreams.

xoxo

Rain in May

Ronan. I have no idea how I survived today. Actually, I do. It is because you are amazing in everything you do. You were amazing during your time here with us and you are amazing even though you are gone. Gone. It’s a word that I’ll never get used to. I know that was you today; you who made it rain in Arizona in the middle of May. You knew I was going to have a hard day and you know how much I love the rain. It’s one of my favorite things in life; especially now since I don’t get to see it very often. You knew it would make me smile and think of you. You made it pour and you made take the time to be still in breathe in the clean air and just be for a few moments. I know it is making you uneasy how restless I am. I know you are watching me stumble about and I can just hear you saying, “Moooooommmm! Don’t be sad!” I hear you tell me that a hundred times a day. I felt your little kiss on my cheek today as the rain splattered down on my face while I was watching your brothers play on the playground at school. I keep telling myself you sent this rain to me today to make me happy; not because it was your tears pouring down to let me know how sad you are to be away from me. I know, baby. You don’t have to tell me. If anyone understands, it’s me. I miss you too.

I went off to see my therapist today and I was walking up to her office, I thought to myself…”I’ll bet I’m not even here on the right day.” Turns out, I was; but at the wrong time. Shocker. It’s a wonder I can even dress my self appropriately. Sarah worked her magic and just happened to have some time to see me so I was able to get in. I saw “The Good Doctor,” first. I think we said a lot of fuck words together. He kept telling me how fucked up all this was, I kept saying it was fucking bullshit and kept asking him what the fuck I was supposed to do now. He told me he thought it would be a good idea to go and get my arms tattooed with sleeves because that totally makes sense. He was only kidding and it made me laugh. We talked about if I thought anybody failed me during all of this. I told him, no. Everybody in our life went above and beyond for us. The only things that failed us were medicine, doctors, science, and lack of funding. All of those 4 things right there killed my child. Wow. If I could have all of those things in a room with me it would not be pretty picture. I’m pretty sure I would feel no mercy for any of those things and a lot of words would be screamed and maybe a few balls would be cut off. Thanks for killing my child because you don’t have your shit together and have a cure for this disease. My son just died because if this. UnFuckingacceptable. Don’t worry about me…. my son is just another statistic now. So happy he could be of fucking service to you. Thanks for your time. I won’t ever forgive the “doctors,” until a cure is found. And it better happen before I die because if it doesn’t, I could become very old and very crazy. Old and crazy can be a very dangerous combination. You don’t fuck with an old and crazy person. It felt good to talk today. As much as I blab on here, I’m not the best at actually talking to people in real life. It takes a lot for me to feel comfortable enough with someone to talk to them openly about everything that is going on in my head. It’s a good thing that I feel so comfortable with Sarah. She makes it easy for me to open up and say the things that I’m most afraid of. I like the fact that she is not pushy with me in the way that I am feeling or how I am dealing with things. She is very good at guiding me but not pushing. Huge score in my book. I don’t deal well with pushy people. Unless their names just happens to be Fernanda, Stacy, or Auntie Karen. Those 3 can push me at anytime and I usually listen. They know how to work me like a little puppet. Well, almost;)

After I saw Sarah, I ran to meet your daddy for lunch. We grabbed a quick bite and I ate some turkey for you. I tried. I then put on my best mommy boots and went to Liam and Quinn’s school to help out in their classroom. I was nervous about it the entire day; but I knew how important it was for your brothers. It was hard for me to be there…. but I tried my best to stay calm when all I wanted to do was freak out and run away. Being around a lot of people is hard for me and it just feels wrong. I set my anxiety aside and put on my best smile for your brothers. I love them so much and I refuse to let them down by not being there for them if I am able to. We also had their team baseball pizza party tonight. It was very sweet and I am so thankful for the team they were on this year. It has been so therapeutic for them and they loved every second of it. They are sweet, happy boys whom now have to learn to start over with our family. Do you have any idea how difficult it is to go on without the little baby boy who ruled this house for the almost 4 years of his life? We all ate, breathed, drank, everything Ronan. I am not kidding when I say that baby was our entire world. He kept us on our toes, he kept us laughing, he kept us so blissfully happy. It was the 5 of us and we were unstoppable and loved every second about what we had. Now that he is gone, we have to relearn how to be a family again without him. It is the saddest thing in the world. Woody asked me tonight If I think we will ever be happy again. I straight told him No. Or if we do come close to being happy again; it will never ben in the way that we were with Ronan. Ronan was our sunshine. And we all knew it even before he could walk and talk. He was the missing link that fulfilled our family to a tee. Everyday with him was something magical and special. Everyday with him was a gift and even the twins knew this. So now what do we do?? We go away together for a while and try to reconnect as a family; minus our little guy. We don’t have a choice as it is up to Woody and I to stay strong and fix as many broken pieces as we can. We owe it to each other and we owe it to Liam and Quinn. I’m not going to let Ronan down as I know he is watching us.

That is all for tonight my loves. I love you, Ronan to the moon and back. I love you all gorgeous followers. If you give me some time, I will start taking orders for bracelets. I just ordered 1,000 of them but they will take a while to get here. As soon as they arrive I will let you know and take down your info. You can pay for them by making a donation to The Ronan Thompson Foundation. Let’s get the word out to as many people as possible! Ronan’s work is only just beginning! I forget to add tonight that while I was walking out of Fry’s on Tatum and Shea today I saw a big bucket on a display table. It had little flyers about donating to childhood cancer. I got so excited! I then looked in the clear bucket and this was late in the afternoon and it had about 3 dollars in it. I mean really, 3 dollars?? I almost went inside to talk to someone about how maybe they could promote this a little more…. like by putting Ronan’s face on the jar… but I was in a hurry to get to the boys’ school. I threw a 20 in it and I think I’ll go back tomorrow to talk to somebody. Baby steps, baby steps. It’s better than nothing as it’s a start.

I am leaving you tonight with something that many of you are not going to be a fan of so you’d better stop reading here.

But this is what I thought while driving to my therapist today. I had a huge rush of anger wash over me and I said in my head,

“FUCK GOD.” Yup. I said it and I have the balls to say I said it because it was how I was feeling at the time. Angry at this so called “God,” person that just decided to take away my child and not fix it even after all of the prayers and I know there were hundreds of thousands. So why weren’t they answered? Was it really asking too much for you to just help my baby be o.k. and give him back to me? Or maybe you are just a selfish person who wanted him all to yourself because you had never seen such a beautiful boy exist on this planet. Either way, you are a Dick. If you are really all so mighty and powerful like people think this should have been an easy problem for you to fix. I’ve decided that I’m going to have a “FUCK GOD,” shirt made and wear it whenever I hike Camelback Mountain. I have every right to be that pissed. And anyone who gives me crap about saying this…. you’re not entitled. You didn’t just lose the love of your life-like I did. Like Woody did. And like Liam and Quinn did. We have a right to be pissed off and it comes in many different forms. Today, I was pissed off at God and I am second guessing everything he supposedly “does.” He has a lot of making up to do but nothing will even come close because Ronan is not coming back and that is the only thing our family wants.

Sweetest Dreams. Thanks for not judging only embracing. Love you all

xoxo

FUCK YOU MOTHER FUCKING CANCER

Text to Mr. Sparkly Eyes tonight: “I don’t know much about life; although I pretend like I do. I know almost nothing about death…. but I am about to learn about it in a very hard way. I don’t think R is going to be around much longer.” I often find myself thinking my truest thoughts and sharing them with him. Those were my thoughts tonight. I don’t like my thoughts, but they cannot be ignored. I wish I could tell you all that Ronan had the best day ever. But that would be a lie. I wish I could tell you I didn’t have to hold my husband as we cried about our son together. But that would be a lie too. I wish I didn’t have to tell you a lot of things about today. But I’m going to anyway.

Auntie Karen picked us up for the clinic at PCH. I saw Dr. Adams as soon as we walked through the doors and gave her a quick hug and kiss on the cheek. The look in that woman’s eyes say so much. She knows it all, and I can read her without her having to say a word. I didn’t like what I saw today; but her eyes cannot lie and I could tell she knows what is about to come.

At the clinic, Ronan’s labs were drawn and we were waited on hand and foot by our sweet nurse, Patty the entire day. I did end up sneaking out for about an hour to go to my twins’ Mother’s Day Tea. Bethany met me a the clinic to sit with me and ended up driving me to the boys’ school as there is no way I am capable of driving these days due to my lack of concentration. I cannot tell you how hard it was for me to be there today as all I could focus on was the thought of being away from Ronan and the reality that I had to go back to. My twins were so happy to have me there so it made it all worth it. I would walk through fire for them. I left there with my nerves shot but my dear friend, Melissa, said I put on a great show. She drove me back to PCH as soon as I walked in and saw the look on Woody’s face, I knew something was wrong.

All of Ronan’s levels were out of whack and his platelets and blood were low as well. He was transfused, and Dr. Eshun came in to tell us that Ronan’s liver enzymes were also high, which could mean that his liver is failing. If this is the case, Ronan will not be eligible for the trial over in San Diego. As of now, we cannot do anything except sit and wait to have his labs redrawn on Monday, to see if maybe it was a fluke and his liver was just off due to Ronan being dehydrated and pumped full of nothing but medicine. I am trying my best to get him to drink for me and we pumped him full of fluids today.

After Woody and I found out that Ronan may not be eligible for the trial anymore we went into one of the rooms in the clinic and both sat and just stared at each other. I remember blurting out things like, “How could his happen to him, to us, what did we do wrong, he is so perfect…. why him???” I remember Woody saying something crazy like he should not have been a lawyer, he should have been a doctor so he could fix Ronan. We cried and tried to put together another “plan.” I feel like Woody is almost more knowledgable than most doctors about this disease. He emailed Dr. Eshun about some phase 1 study that he had heard about and asked if he would do it at PCH for us if San Diego falls through. Woody left shortly after he sent the email and I went back into the room where Auntie Karen was waiting to sit with Ronan. I sat on the floor and rubbed his little legs and cried. I emailed Dr. Eshun and begged him to please help us as he has no idea how much we love our little boy and we cannot lose him. He came to see me shortly after and said of course he would help us if he could. He will do the study that Woody recommended if that is what we wish. We are desperate at this point.

We had a long day at the clinic and I vaguely remember Marisa and Danielle coming by. They sat in the waiting area most of the time due to Ronan kicking them out of the room we were in. It was comforting to me to just have them there to give me a hug. Best girls ever. We then returned to The Ryan House. Ronan was pretty tired from his long day out, as was I.

~ It’s now morning. Didn’t get to finish this last night due to being so tired and just wanting to hold Ronan. It’s early, and he just woke up and asked me for some milk. His wish is my command. Little bug.

Last night, after our long day, I was feeling in desperate need to talk to my therapist. I knew I couldn’t leave Ronan and make the drive out to her office though as it’s in North Scottsdale and I just didn’t feel comfortable with being so far away from Ronan. I asked if she could come her and see me. Without any hesitation, she said she would come after her last appointment. I could not have been more thankful. We sat at The Ryan House for almost 2 hours for my “session,” which just felt more like talking to a really insightful friend. I cried a little bit, but told her how numb and in shock I am…. how I don’t really feel anything yet. She said as of now, I couldn’t be any other way. I’m in survival mode, full force. I told her my fears about how alone I’m going to feel without Ronan. How I had always felt a little lost my entire life until he came along. He tied our family together so perfectly. I told her how I don’t know what I’m going to do without him if he does have to leave. I am going to feel so lost without him to look after. That child is my whole world. And I am so, so, scared to be without him as he is my other half. Sarah talked a lot about something surrounding me….. she called it peace at first but we then decided that wasn’t the right word. I’m still not sure what it is, but I feel it too. It helped talking to her last night and she gave me the best advice as far as what the fuck I am supposed to do next. We decided I can only take things hour by hour now. And if I don’t know what else to do, don’t do anything. That’s the best I’m going to do at this point.

After she left, I went into full on panic mode. Ronan does not look well. Woody and I have some hard decisions to make as far as where we want Ronan to be. I have said it before, but all I want is Ronan home where he wants to be. This baby has lived the last 8 months inside hospitals. All he wants is to be home and it is making me sick to my stomach that I cannot give him at least that. As beautiful as this place is here, he thinks it is a hospital and it is breaking my heart. He deserves to be home and if we can make it happen, we are going to. Woody said he felt silly for asking me this last night, but he wanted to know what I wanted for Mother’s Day. I told him nothing, but actually I know what I want more than anything. I just want to take Ronan home. If we don’t get to have him much longer, all I want is for him to be at the place he loves more than anywhere else in the world. If only it were that simple.

Gotta go loves. Ro is up. Have a good day.

xoxo

Not a kissing day

I sat here at The Ryan House all day with Ronan, rubbing his little leg that is hurting him so badly. We had a lot of visitors in and out. Ronan slept most of the day while I had the chance to sit in our room and see a lot of friends and family. I was hardly awake when Niki came by. She sat by me on my bed and held me while I sobbed in her arms as I knew I would the minute I saw here. She brings out the raw emotion in me for some reason. I held on to her and stroked her insanely gorgeous red, wavy hair that I am so in love with. After I let go, she sat by me and rubbed my back and I think I fell asleep again. Her visit was so peaceful. I had lots of other visitors…. Melissa, Patty, Sarah, Auntie Karen, my Aunt Sheri, my sweet cousin, Shannon, my mom, Jim, Liz, Olivia, Luke, Heidi, Stacy, Fernanda, Tricia, Tiffany, Dr. Maze, Katie, Addison, Lane, and I think a few more of the cousins. It was busy here but Ronan didn’t seem to mind.

I spent a lot of the day, curled up with Ronan, thinking, thinking, thinking. It’s not a fun place to be right now. Woody and I met with a doctor today about getting Ronan in over at St. Joe’s tomorrow to do radiation on his legs. It will be  a one time treatment, and we are hoping it will subside his pain. The pain medication he is on is just not cutting it. Woody and I both decided he can handle it as we know how strong he is on the inside. It will be fast and painless and we are praying it will give him a little relief. The pain is swallowing him whole as he cannot even move out of bed and even me carrying him to the bathroom is torture to my little guy. I cannot just stand back and do nothing if there is a chance this may help him.

Woody has also been in contact with Dr. Sholler from Vermont. She has a trial that has opened up and I am not going to say much as of now; but if we can get Ronan comfortable enough with his pain, we are talking about making the trip out to San Diego to start this 5 day treatment. We have sat all day and weighed our options. I get that my first priority is keeping Ronan comfortable, peaceful, and happy. But as of now, he is none of those things. I am not foolish and I am not unrealistic. My child is dying right before my very eyes. I do believe in the power of miracles, but our miracle is not going to come in the form of him, lying in this bed, while I sit back and do nothing. I know that God is not going to open up the heavens above and heal my baby. This cancer is going to eat his little body alive and as of now, I am just sitting back and watching that happen. That to me, is not acceptable. I am loving him with everything I have; but if someone out there is willing to take a chance on Ronan, I believe I have to take it. His miracle is going to come in the form of medicine combined with the power of prayers. But prayers alone are not going to save Ronan.

Woody and I have not made any decisions as of yet. Obviously we have to weigh the pros and cons very carefully. But as I said in the beginning, I am not going down without a fight and neither is Ronan. It is just not in our nature. By sitting here and doing nothing, I feel like we are not fighting if there is even the smallest chance that this treatment could help Ronan in any way possible. If this doctor ends up telling us no, than we will accept the time left we have with Ronan. If I know in my heart that Ronan is ready to give up, then I will not push him. I know he is not there yet… I know the soul and spirit of my child and he is not ready to go down so easily. How can I possibly give up on that if there is the slightest ray of hope? It is eating me alive just sitting here, and doing nothing. Loving him is not enough if I can still be fighting for him and his life. I cannot let him go yet. I still feel in my heart that it is not his time.

So, the word inhumane has come up a couple times tonight. I’ve decided it’s a word that should not be associated with parents who are fighting for the life of their child with all they have. I believe to do otherwise is inhumane. We only want what is best for our son and we are struggling to figure it out. We as parents do know that we have to know in our hearts that we have done everything possible for Ronan. Even if the outcome turns out the same. So, as parents we will take the next few days, to watch Ronan carefully and make the decision that we feel is best for our family. If we do decide that enough is enough, it will be because Ronan has led us to that decision. This is still his journey, his life, and we will respect that. But it will not be without exhausting every possibility. We do not want to put him though anymore, but how do you give up when there still may be a chance???? I don’t think that you do. I know my child better than anyone, and today when I tried to kiss him and he yelled at me that “It’s not kissing day!” I knew right then and there that his little feisty spirit still exists. It’s my job as a mom and as the adult to help Ronan fight for I know what is in his soul. He does not want to leave us; he does not want to be anywhere else. We deserve our son, Liam and Quinn deserve their brother, and I am not throwing in the towel. I know this disease well enough now to know that things can change in an instant. I just pray that they change in an instant for the better and not for the worse for us.

We will start off tomorrow of a CT scan of Ronan’s little body, that is so badly beaten up and bruised. We will then do his RT without his anesthesia. I talked to him about it tonight and he said he will do it and make Dr. Maze proud and not need any sleepy medicine. The only thing I worry about is keeping him comfortable enough. I know he can do it, he will push through the pain if he has to. This is something no child should ever have to go through and I am beyond sick about it. Looking at Ronan’s banged up body makes me shutter. Listening to the sounds of his screams from the pain is something I will never be able to get out of my head. I swear to god on my life I will fucking live long enough to see a cure for this awful disease. I swear to god I will do whatever I can to help find a cure so no child has to suffer the way I have had to watch my son suffer. No child deserves this pain and no parent deserves this heartbreak.

That’s all for tonight my peeps. Sweet dreams to you all. G’nite my Fernanda. I miss you so much already.

xoxo

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

Burn baby, burn

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

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

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

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

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

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

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

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

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

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

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

The rebirth of Ronan Sean Thompson

I seriously feel like I’ve just been through labor again. I am that tired, exhausted, and so relieved. All of the same feelings that come with childbirth. Ronan’s surgery was smooth sailing. Dr. La Quaglia is a God, is blessed by God, and has angels surrounding him every second of the day. We met with him and he told us how perfectly the surgery went, how he was able to save every organ, and how great and healthy they all looked. He was very confident that he got all of the base tumor. He looked everywhere, even in his chest and under his arteries and did not see any other signs of Neuroblastoma. This does not mean we are out of the woods yet…. The Neuroblastoma is still in Ronan’s body, but the base tumor is gone. He said the tumor was about the size of the golf ball but wouldn’t let me see it due to it already being sent off to the lab. I don’t care that much; it is gone, Ronan is here, and we are so thankful. After meeting with Dr. L, we soon were taken back to see Ronan. I was so nervous but it wasn’t as hard as I thought it was going to be. Waiting for him to come out of surgery was way harder. He looked so brave and big in the bed, all hooked up to everything you could possibly imagine. The tubes didn’t freak me out at all because underneath all of that stuff was my baby boy… waiting for me. I kissed on him and told him how proud I was of him, how brave he was and how we could finally put this part of our life behind us. He kept nodding his head and was listening to every word I said. After surgery we had to be transported across the street to the Picu. The guys who were transporting us wanted Ronan as sedated as possible, but Ro wasn’t having it. They had to give him tons of medicine just to keep him calm. We heard a lot of “Wow, what a strong kid you have.” And also a lot of “He is really tall for 3.” There was a lot of laughing about Ronan and his strength. Everybody kept telling us what a good thing it was. This is par for the course with Ro… nothing is going to stop our little guy. After they finally got him sedated enough, he was transported across the street to the Picu. I rode in the ambulance with him and we were quickly moved into our room. Woody and I have been up for almost 24 hours now… my eyes are barely open. Ronan is just now getting his breathing tube out, or excavating him as they call it.

Awwww…. I tried my best to update you all last night, early this morning, but I was so tired and taking care of Ro. It is 7 a.m. here now and Ronan is asleep. He has been having a little trouble breathing on his own, so they have hooked him up to machine that is giving him a little extra oxygen. This is normal after such a major surgery. We will be moved over to Sloan this afternoon considering all goes well today. Woody slept most of the night; I did not. That’s a mama bear for you though. And Woo needs his rest; he requires much more sleep than I do. The nurses and doctors here have been amazing. So very sweet and attentive. We could not be more pleased with the job they are doing. Our nurse looks like she is about 12. She is the cutest little thing and is so great with Ronan. What a doll.

Guess how many views Ronan’s blog got yesterday?!?! 8,122! Can you believe that! In one day alone! You all were so busy spreading the word on Ronan to make sure we had everyone praying for him. I cannot say thank you enough. I know it is because of all of you, your prayers, and positive energy, that he got through yesterday with flying colors. Our little guy is going to change the world and you all are helping him. He WILL be the poster child for this awful disease. Please keep spreading the word and sharing his story. Thank you all for holding his heart in yours and going with us on this journey. We still have a very long road ahead of us; but I feel like today is a fresh start for Ronan. He is finally free of the tumor our of his abdomen. It’s as if he has been given a new life; this is his rebirth. January 3, 2010 will forever be Ronan’s second birthday. And that makes him a Capricorn, just like his mama:) Us stubborn goats can get through anything!!

Please know how much you all mean to us, even though we don’t know half of you. Your words kept me going yesterday and If it wouldn’t have been for all of you, I would have locked myself in a bathroom somewhere and would not have come out until Ronan’s surgery was over. To all of my family and friends, I love you all so much. I am so blessed and thankful for your support and love during this time in my life. I also could not have made it though yesterday without the most amazing man alive, my husband. He truly is one in a million and the best husband and father in the world. I am so lucky, thankful, and humbled.

I am seriously in the middle of an episode of Grey’s Anatomy right now. Well, minus all the sex. I was just visited by the most amazing woman Dr. and her “team” of residents. I am beyond fascinated, impressed, and the Doctor could not have been more knowledgable, kind, and positive. I got to watch her ask her questions to her residents and see them scramble for the answers. It was awesome. She said it is not often that she see’s children respond so well after such a major surgery. She said most kids lay in the Picu for days. Her exact words were, “I don’t know Ronan, but maybe he is just such a rockstar that this is just how he is.” How awesome is it that she, this incredible woman, called Ronan a Rockstar without even knowing his nickname! I loved it!!! Made my day:) Ronan will be transported back over to Sloan later this afternoon. He has been so corporative and listening to everything we tell him to do. He really is a brand new boy!

This mama has had no sleep and I don’t see sleep happening anytime soon. I am over the moon with how well Ronan is doing and I feel so fortunate that we were able to bring him here, to the best surgeon in the world. I know we made the right decision. We are right where we need to be and today we can breathe a big sigh of relief that this part of Ronan’s journey is done and over with. Bring on the Stem Cell Transplant!!!! Ronan has proven time and time again, that he can get through anything. He truly is such an inspiration and a Rockstar!! What a little blessing to the world he is.

Love you all so much. Thank you again for your support and love!!!

xoxo