Tag: sarah matheson

4 Months feels like 4 Years. Thanks, Cancer. You’re AWESOME.

Ro. I can write tonight. I need to write tonight. It’s been a couple of days I think. I don’t know that I’ll be able to sleep tonight. It’s creeping up. The 9th of every month date. 3:30 a.m. will be here soon. I’ve been dreading it all week. Consumed by it. 4 months is almost here. What was I doing at this time, 4 months ago? Laying with you, while Fernanda sat and watched you so we could get some sleep together. I was cuddled up beside you, which was always my favorite place to be. I’ll bet you Fernanda was rubbing you, trying to sing, “Twinkle Twinkle Little Star,” but she didn’t know the words, so she had to Google them on her phone. I love that story. She watched you because she knew that I needed the rest and I wouldn’t sleep if someone wasn’t keeping their eye on you.  She knew when it was her time to go and I think she left around 2:30 a.m. She kissed us goodbye and left the two of us in the room, alone together. She knew that it was time for you to go. She knew that we needed to be alone. She knows so much. I remember watching you. Your little breaths got so shallow. I remember The Ryan House nurse standing over us and how fast my heart was beating. I looked up at her and asked if you were gone. She told me not yet, but it was going to be soon. I remember thinking how unfair it was that my heart was rapidly beating, yet yours was getting ready to stop. I kissed you all over. I told you I loved you and whispered to you, “Come on baby. Come with me. Let’s get out of this place.” I asked her to go and get your Daddy. You waited for him to come in and kiss you goodbye. Then your little heart just stopped. Just like that. I go over this night in my head, at least 10 times a day. I pray that you know how much I love you, I pray that you were not scared as I worry about that so much. I still can’t believe you are gone and that I am still here, living this life, without you.
I had a mini freak out today. Panic took over after I dropped your brothers off at school. I knew I could not go home to an empty house. I went to Starbucks and sat with my computer and went through emails and paid bills. I emailed somebody at www.spirithoods.com and told them about you and asked them if they had ever thought about donating their amazing “hoods,” to kids with Cancer. I told them how much you loved yours and how many cancer kids would comment on it, but probably couldn’t afford to buy one. I asked them to consider donating some. I actually got a response pretty quickly and I was very impressed. I’m working on them and I have a feeling they won’t let me down. Could you imagine how many smiles their Spirit Hoods would bring to the faces of kids everywhere. Hospitals are notorious for being cold. Remember how much we loved wearing ours together. You looked so cute in yours. I could have gobbled you up and am sure I tried. I miss your little face so much.

One of our favorites met me for a bit today. I was a wreck, but tried my best to remain calm. I don’t think I put on a very good show. It’s fine. I have never been one to pretend with our lovie. No reason to. I talked about how this date is hard for me every month. I tried not to cry and just listened to the words that came my way. I tried to keep an open mind and to not be angry at the fact that you are not here. Our lovie sat and told me that you are not really gone, that you are everywhere. That you will never be gone. I know this deep down, but it does not take away the pain of your physical self not being here. It does not take away the pain of not being able to hear your squeaky voice or look at your beautiful face. Our lovie asked for a smile. I refused as my smile seemed nowhere to be found today. I’ll bet you I went the whole freaking day without smiling. And I always smile for our lovie. That’s how you know it was a really, really, bad day. I know you know. I know it’s on my really bad days, that you find some way to make me feel a little happy. I found that today when I went to visit my new friend, Katie, at her boutique. Her kind heart and kick ass music playlist made me feel good. I joked with her that she must secretly have access to my iPod because I swear she always has my favorite songs playing while I am in her store. Tom Petty’s “Last Dance with Mary Jane,” was on when I was telling her that. Oh, Tom Petty…. how I love thee. And Miss Katy…. this new gorgeous girl you have put in my life, Ro. Thank you. I can tell she is going to be a big part of this new, strange, life without you. Another one of your little gifts. Thanks baby.

The rest of the day was spent in therapy. Therapy with your Daddy and than I went off to therapy alone with Sarah. I felt like my head was spinning most of the day. Than I decided that it should feel that way, as I have many hats that I am wearing right now. I am not sure if this is a good or bad thing; but it is where I’m at. You want to hear all of the hats I’m wearing? I’ll tell you.

The Maya Hat- Trying to take care of me. Whatever that means.

The Ronan Hat- Trying to connect and still trying to take care of you. It’s all I want to do.

The Mama Hat- Trying to be a good Mama to your brothers. I’m naturally a good mom, so this is not hard. But it still takes a lot more effort than it used to.

The Wife Hat- Trying to be a wife to your Daddy. Failing.

The Therapy Hat- Sarah, Dr. Rachel, Dr. Joanne, and Dr. Beth with Liam and Quinn. FUCK. That is a lot of therapy, but so necessary.

The Friend Hat- Trying. Failing. I miss my friends.

The Foundation Hat- My busy work. Trying to get everything figured out. I like this hat. It gives me HOPE that I am keeping  you alive; even though you are gone.

The Not Slitting my Wrists Hat- Want to. Everyday. Everyday I survive without doing this is a fucking miracle.

The Grieving Hat- I’m doing this. In my way, alone. Or in the presence of therapists. I’m working hard to do this. I don’t want to stuff away any pain because it will all come back to haunt me later if I do.

So baby. What do you think about all of that? That’s A LOT of stuff. Remember back in the day, when all we had to worry about was naps and grocery shopping? That life does not even seem real anymore. I feel like I’ve been living this life now, forever. What a stupid, spoiled brat I was. I’ve got a lot of making up to do for being such an ignorant human being. I’ve got a lot of work ahead of me. It’s fine, baby. I’m not scared. I know you are going to help me, therefore, I can do anything. Fuck You, Cancer. Right, Ro?

My new friend, Heather, also stopped by for a visit. She is the Queen of random, surprise drive-by’s. I just happened to be home and was so glad to see her face. We sat in the kitchen today and talked for awhile. She is another one of those peeps with such an amazing heart. She always seems to appear when I need  a bit of cheering up. When I need a little kick in the ass to remind me of how strong I am. She told me that she tells someone, at least once a day, that I am going to do for Childhood Cancer, what Lance Armstrong has done for Cancer in general. WOW. What a compliment. Talk about picking a girl up, when she is down. I took a minute to think about what she told me. I started to get overwhelmed, but a calmness washed over me. I think she is right. I think she is right because I have you to fight for and the strength you give me will help me change things, in a drastic way. Everything I used to be scared of, Ro…. no longer exists. I am here, on this earth, to change things for you. Because you know that you did not deserve to die, nor does any other child suffering from Cancer. Somebody has got to take this fucker down. Super Ro to the rescue!!!!! I know we can do this, little man. Heather, knows we can do this. She lit up like a little Christmas Tree when she was telling me this today. It was so stinking adorable. It was so beautiful. It was so you.

Oh, Ro. Nice song pick tonight as I was just getting to end this post. Seriously! That just got you the BIGGEST SMILE! I love you to the moon and back, baby. I hope you are safe. You are so right, this is absolutely not the end.

THE BRAVERY

Tell me
Come on tell me what you can
Even as you wait for death your wiser than I am
Tell me what does it mean to exist
I am not a scientist I must believe there’s more than this
And I can not accept
That everything that’s real
Is only what our eyes can see
And our hands can feel

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
Are just as real as the time we spent
You’ll always be close to me
My friend
This is not the end

I see
I can see you’re still afraid
Weathered like the silver moon, on you even fear looks good
I wish, I wish I had some words to give
But all that I can think to say
Is I’ll be with you everyday

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You’ll always be close to me
My friend
This is not the end

La la la la la
This is not the end
La la la l al la
This is not the end

I don’t care
I don’t care what you believe
As long as you are in my heart
You’re just as real as me
Maybe
Maybe even more
Someone who’s touched so many lives
can never, ever die

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You always be close to me
My friend
This is not the end

Excuse the rambling novel tonight… it’s just the screaming voices in my head

Ronan. Today was real. I think. I honestly don’t know what is real and what is fake anymore, but here is how my “real day,” played out. Woke up after another restless night of sleep. Went through all the motions of the morning, eg: getting out of bed, showered, dressed, boys up, showered, breakfast made, water bottles filled, lunches packed, drove them to school, sent them off with the usual, “I love you so much. I’m so proud of you both, try your hardest, be kind, help others, have a wonderful day, see you at 3:15…. YES, I will be here to pick you up, please don’t worry.” FUCK. I’m exhausted already. I got into my car, to headed to my appointment with Sarah. Stopped at Starbucks drive thru to grab my breakfast of champions…. Non-Fat, Vanilla Latte, please. Pulled up to the window to pay for my order. The girl goes, “The car behind you has taken care of it.” I looked up; in disbelief. “What??” I replied. “No, no, um…. o.k….. but really??” Starbucks girl smiled, “Yup, it’s taken care of.” I was in awe. “Please tell her I said thank you.” I tried to see who it was, this sweet stranger of mine… but I didn’t want to be all creepy and stalker like. So, I drove off, and waved to the White Range Rover lady behind me. I don’t know if she knew who I was…. or if it was just somebody who felt like being nice today. Either way, it doesn’t really matter. It made me smile and think of you and just the kindness of people in general. It was a great start to my new normal of a day. Thank you Starbucks stranger for making me smile.

I went to my therapy appointment with Sarah. It was good today, as always. I love that I feel like she knows you so well. It brings me comfort that in your last few days, she took the time to come to The Ryan House to sit with me and I let her peek in at you. Or the little shell that was left of you. She loves you. And me. The fact, that she knows you really did exist, and I didn’t just make you up in my head; makes me feel less crazy. Many days, a lot of days; I think you weren’t real. I always knew you were too good to be true. I always knew you weren’t mine to keep forever. My mind still tries to trick me into thinking you did not exist; as protection mostly.

I left Sarah’s and went straight to Dr. Joanne’s office. FUCK. Her session was hard today. Hard as in she tries to guide me to places I don’t want to go to; ever. The retelling in detail about you and your sickness. The way I felt when I finally knew you were going to die. She digs deep, but she does it in a way that it makes me feel safe, yet vulnerable. She has a gift and I know it is going to help me. I cannot deny my pain, anger, jealously, sadness, emptiness, loneliness, and worthlessness now that you are gone. She knows all too well what that feels like which is why I am tying really hard not to hold back with her. It is a lot of work though and I left there today, feeling like I had just relived losing you all over again.

They say scars fade over time…. I don’t think so. I honestly think they just become deeper, but you learn how to live with them and transform them into just being a part of you. Some people choose to hide them, cover them up, and some people may even pretend they disappear. I know this is not true. If I could, I would take a Sharpie Pen and color in all of my scars in black. I would make them say things like, “Fuck you, my child died.” “Cancer sucks.” “Please stop smoking, it really offends me.” I would fill in my scars with all of my angry words, but I would also have them say beautiful things too like, “He was the best thing to have ever been mine.” “Please be kind.” “Please help others.” “Please know how lucky you are, to have healthy kids.” “Please never take a second or your life with them for granted.” I could go on and on with the things I would write all over my body. I would leave them there for the rest of my life so then I could be a walking reminder to people to stop being so fucking ignorant and making up problems. To stop getting caught up in the petty bullshit, gossip, caring what other people think. If you are lucky enough to get to tuck all your babies in bed at night, then life should be beautiful every SECOND of the day. Enough of the wasting energy on things that do not really matter. Learn to be free. Learn to appreciate. Learn to truly be who you are.

I now have to figure out how to live my life this way, without my Ro baby. To me, that is the saddest thing that could ever happen to a person. I now have to make something “good,” come out of Ronan’s death. It is so trite, but as I have said before; I don’t have a fucking choice. I have to learn to live again, the way he would have wanted me to. Which is with fearlessness, feistiness, happiness, honesty, love, laughter, as the free spirit that I have always been; all while breaking a lot of rules and refusing to give in when I really just want to curl up and die. I have to find a new purpose, meaning, and higher power to my life. I have an idea of what it is…. I just have to heal myself a little more before I can fully commit. Go Big or Go Home, right Ro Baby. I know you know.

I’m leaving you tonight in the realist way I know how. With my honesty. You may not like it; but I know deep down, you all appreciate it. Thank you, my lovelies. Thank you for not being scared of the insanity of my brain after having lost a child. Thank you for being brave enough to let go of your world for a little while, to be immersed in mine. Love you all.

Warning: These are real life conversations I’ve had with people in the past few days. I’m only using first name initials, to protect the innocence of those who I hold dearest to my heart. If you’re going to be offended, worried, judgmental….. stop reading. If you choose to continue to read; don’t say I didn’t warn you. This is my life. My honest hell of a life and living inside of my head is worse than any mental institution could ever be. Here goes…….

Conversation via text message 1) I am the green. S is the white.

Gotta love a girl for trying. That S of mine. She is an angel on this earth. Although her words brought me little comfort, I love what she believes in her heart. But I am still telling God to fuck off.

Conversation 2) vía real life: (N) “What are you doing?” (Me) “Thinking about all the ways I can kill myself.” (N) A lot of yelling on her end…. I can’t remember the words she said, so I just started crying. (Me) “Fuck. You asked what I was doing. That is what I’m doing. Do you want me to start lying to you? You know I’m not really going to kill myself, N, because I’m on mommy duty, so guess what…. I’m going to pick my kids up at school, love them, take them for a play date, do their homework with them, laugh with them, feed them, read with them, and do all the normal mommy things that normal mommies get to do, without knowing what it’s like to have lost a child.”

Conversation 3) vía real life: (W) “What can I do to help you sleep?” (Me) “Blow my brains out.” (W) “You know I would if I thought that was best for you. But you have Liam and Quinn to take care of, and you know that would ruin their lives. (Me) “I know.”

I was told by someone, whom I’m not naming, that watching me is like watching a bird who has just had one of its wings clipped. I am like the little bird, whom is trying so hard, with its one wing to fly…. but it just doesn’t know if it can or not. It just doesn’t know if it wants to, again. This person thinks I am stuck in between those two places. Not knowing if I want to fly again, or if I just want to give up and stop trying. It was one of the most painfully, beautiful things I’ve ever had said to me in my life; because it is so spot on. Thank you, my dear friend. Thank you for never sugar coating and for being such a hard ass with me, but in the most gentle way possible.

Ronan, my baby. I’m so tired, that I cannot even see straight. I have to try to get some sleep. Please visit me tonight, but in a nice, peaceful way. PLEASE. I am desperate for you and one of your smiles and winks. I miss your squeaky voice, so, so much. I love you to the moon and back, baby. I hope you are safe.

xoxo

One last thing::::::: The MISS Foundation. I cannot say enough amazing things about it. If you are looking to donate to something, other than Ronan’s Foundation, please donate to them. I can honestly say I was in a deep, black hole before I started seeing Dr. Joanne. I’m still there, but I swear I can see a little glimmer of sunshine peeking through. If you know someone who has lost a child…. when the time is right, please help them get help. It is one of the many things saving my life. It is going to take a team of people; I KNOW this. Dr. Joanne is absolutely inspiring in every way. I am finally starting to come to a place where I can see that I cannot do this alone. Nobody can. As strong as I think I am, I am self-aware enough to know that I need help. Thanks peeps. Sweet dreams. Kiss your babies. As in, get out of your beds, off of your computers, and go into their rooms, and kiss them now. RIGHT NOW. I know you all know how lucky you are. But I also know how easy it is to forget that it is a privilege, NOT a right, to be a parent to beautiful, healthy kids.

http://www.missfoundation.org/bios/jcacciatore.html

xoxo

New obsession. Inferno Hikes. My physical Hell.

Ronan. The Sunday Blues. I hate Sundays. Always have. I woke up in an awful mood due to the dreams I had all night long. They were long, intense, and I was mad at everyone in them. I fought with your daddy in my dreams. Quinn and all of your cousins were smoking cigarettes in front of me. I was crying, screaming, and yelling. Everyone in my dream, knew you were dead and it was all they talked about. Is it too much to ask for a little peace in my life? Apparently, yes. To say I woke up on the wrong side of the bed, is an understatement. I woke up, vividly recalling what I had just dreamt about; and then I remembered that I was really waking up to you not being here. I walked around in a zombie state of mind for most of the day.

Hi baby. I started that yesterday, but didn’t finish due to trying to go to sleep. I passed out around 10, but tossed and turned all night long. My dreaming is out of control. I could be sick just thinking about it. I saw you in my dreams last night. Yes, indeed I did. I wish I could tell you it was amazing, but it was awful. I had a dream that I was holding you. You were still alive, but you were being cremated in my arms. Your skin was burning off and it was so hot, that I could feel it. I was supposed to just wait it out and watch you burn. I woke up, barely being able to breathe. I got up, walked around the house, went into your brothers’ room, and tried to go back to sleep in there. I did, but didn’t. I slept for a couple of hours and got up early to start my day. I was so tired of trying to sleep so I just aborted mission. I got up, showered, made your brothers breakfast, got them ready, got myself ready, made myself a list for the day of things to do and headed out to take your brothers to school.

I filled my day with errands. I went over to Gay’s house to give her a hug. I have not seen her since your services. I miss her and her little guys so much. So do Liam and Quinn. We are planning a play date with them tomorrow. It will be so bittersweet without you. After I left Gay’s, I finished up the things on my list. I came home, threw on my workout clothes, and decided to do hike at 1:00 in the afternoon. The temperature on my car read 114. Screw it. I’ve hiked the mountain everyday for a week now. Tricia hiked with me Saturday and Sunday. We are OBSESSED. Inferno hiking is our new Hot Yoga. As I was getting ready to head up the mountain, I decided I’d better tell someone where I was. I texted Trish and told her if she didn’t hear from me, it was because I had died; hiking. I made sure she knew where I was in case I didn’t make it back down. I had a moment of hesitation before I started. An empty mountain, the thought of rattlesnakes, the heat, and god knows what else; was enough for me to think twice about braving it today. But then I thought of you and everything you went through in your little life. All the pain and suffering. My fear subsided and I ran, as fast as I could for 35 minutes, up, up and up. I got to the top, started to dry heave, and threw up the only thing I had in my stomach the entire day which was coffee and water. No biggie. I took about 20 minutes to feel the sun burn my skin and I did my talking to you. I can’t remember if I cried or not as I was in a daze. I headed back down and just as I was thinking in my head, that I must be really be crazy; because nobody else in their right mind would do what I had just done….. a man appeared. I thought I was hallucinating at first. I took out my headphones and watched the man who must have been about 75, with his walking stick, approach me. He was carrying a spray bottle mister full of water in his hands. I smiled and told him I couldn’t believe that he was hiking today as I thought I was the only crazy person on the mountain. He told me to take off my sunglasses so he could spray me down. I laughed and thanked him and he told me it would keep me cool for about 10 seconds. I told him that was better than nothing. I think that 75-year-old man, hiking today, was clearly an Angel. It was a little sign from you to let me know that no matter how alone I think I am, without you… that you will never be far from my side. I really needed that today, Ro. Thank you.

I picked up your brothers from school, came home and we did their homework. The rest of the night has been pretty low key. Everyone is tired from the heat of today. Tomorrow, I have a busy day full of therapy appointments. I’m seeing Sarah and Dr. Joanne. I am going to try to go to boot camp at 5….. so please let me get some sleep. I need the rest, emotionally, physically and mentally. I miss you so much. We all do. We spent last night all crying about you. Quinn was hysterical, sobbing so hard that he couldn’t even talk. Liam was crying in your bedroom with your door closed, playing with your Star Wars guys. I cried most of the night as your Daddy tried to take care of all of us; but he was just as sad. I just don’t know what to do with days like yesterday. I almost can’t handle them. We survived somehow. Quinn is watching your favorite movie, “Home Alone,” now. I really can’t handle that. The little boy in the movie is you to a tee as far as the way he acts. You used to quote this movie every other day as you loved it so much.  I so badly wish we would have went on a vacation, and left you at home alone. At least this movie has a happy ending. I don’t see how our life can possibly have a happy ending without you here.

I’m going to go now baby. I’m so tired I can hardly see straight. I love you to the moon and back and hope you are safe. I miss you so much. Sweet dreams, my “not spicy, little monkey.

xoxo

I would like to dream about these sparkly shoes tonight. Something crazy, gorgeous, and girly.

A Sea of Sadness

 

 

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

Just you and me

Ronan. Just another day without you. I wish I could tell you that I am o.k. But, I’m not. I’m just sad. I’m swimming in a sea of sadness and am barely staying afloat. This morning, I took your brothers to surf camp. I sat and watched them for the 3 hours and pushed them as they both complained about the ocean being too cold, etc….. I was the mean mommy that told them to suck it up. My tolerance for their complaining today was at an all time low. At one point, Quinn came in and didn’t want to go back into the ocean. He wanted to stop surfing for the day. I brought up you and how hard you fought for every second of your life. I talked to him about life and how important it is to not give up and to keep fighting. I told him how you would give anything to be living still and if you were having a hard time at something, that you would have never have given up. But life is not fair and now you don’t get to run around, never taking no for an answer, all while pushing every limit, every boundary that came your way. You were just born different from most people, Ronan. Your daddy and I say it all the time. You had a fire and such strength in your soul. That’s  why we were so convinced that you would beat your stupid fucking cancer. I’ve never met a boy stronger than you and I still can’t believe that everything ended so quickly.

After my “get your ass back into the water,” pep talk….. but in a much nicer way, Quinn finished up his class. I don’t know if I’m pushing too hard, but that’s just the way it goes. Your brothers need to learn a little something about fighting to become the best people they can be. To appreciate everything that they are able to do. To never take a second of life for granted. I have no tolerance for whining and complaining anymore. I know what it’s like to watch a little boy go through treatments for cancer and how you never once complained about anything. Except for missing your brothers and just wanting to be home. Complaining about things in our life now just won’t exist anymore, unless it has to do with missing you. That’s the only thing any of us should every complain about. Anything else can be fixed, problem solved, or worked through.

After the boys’ surf lesson, we hit up the hot tub and than came up for lunch. Liam crashed out for a nap, Quinn rested as well and I took my surfboard and headed out for a couple of hours. It was cold, but I welcomed the angry ocean with open arms today. It felt good to be out there and I got tossed around a bit. Coronado is a great place to learn how to surf and the quiet time out in the ocean, when I paddled past the waves to think about you, was nice. After I surfed, I came back up to the condo and hung out with your daddy and brothers. Later in the evening, we went out to our usual spot so your daddy could cook up our dinner. There were a bunch of dolphins out in the water this evening. We spotted about 5 or 6. They were so beautiful and I of  course thought of you. I was than overcome with anger and thought to myself that it was bullshit that a sign from you, had to come in the form of a dolphin. I don’t want any signs…. I just want you. Back with us, the way things should be. I tried to be happy about seeing those dolphins tonight, but it only made me sad and miss you more. You did leave me a lot of signs today, which I am thankful for. I don’t mean to sound ungrateful, Ro. I love all your little signs, but it doesn’t make me miss you any less. Sometimes it hurts more.

After dinner, we came back up to the condo and although it was late…. 9:30, I headed out for my run. (sorry Mr. Sparky Eyes) I promised him I wouldn’t run late at night anymore, due to an encounter I had with some creepy man a few nights ago; but I had to go tonight. It’s the restlessness in me that never goes away. I ran 7 miles…. all the way over to the Coronado Bridge and back. It felt good, it hurt, and I of course thought about you a lot. Sometimes, when I am thinking about you, it hurts so bad that I cannot even cry. I was thinking about being at The Ryan House with you and I felt like I was going to stop breathing as I still can’t come to the realization that you are gone. I think I have Post-traumatic stress disorder. For real.

Post-traumatic stress disorder

Post-traumatic stress disorder is a type of anxiety disorder. It can occur after you’ve seen or experienced a traumatic event that involved the threat of injury or death.

Causes, incidence, and risk factors

Post-traumatic stress disorder (PTSD) may occur soon after a major trauma, or it can be delayed for more than 6 months after the event. When it occurs soon after the trauma, it usually gets better after 3 months. However, some people have a longer-term form of PTSD, which can last for many years.

PTSD can occur at any age and can follow a natural disaster such as a flood or fire, or events such as war, a prison stay, assault, domestic abuse, or rape. The terrorist attacks of September 11, 2001, in the United States may have caused PTSD in some people who were involved, in people who saw the disaster, and in people who lost relatives and friends. These kinds of events can produce stress in anyone, but not everyone develops PTSD.

The cause of PTSD is unknown, but psychological, genetic, physical, and social factors are involved. PTSD changes the body’s response to stress. It affects the stress hormones and chemicals that carry information between the nerves (neurotransmitters). Having been exposed to trauma in the past may increase the risk of PTSD.

Having good social support helps to protect against PTSD. In studies of Vietnam veterans, those with strong support systems were less likely to get PTSD than those without social support.

People with PTSD re-experience the event again and again in at least one of several ways. They may have frightening dreams and memories of the event, feel as though they are going through the experience again (flashbacks), or become upset during anniversaries of the event.

Symptoms

People with PTSD re-experience the event again and again in at least one of several ways. They may have frightening dreams and memories of the event, feel as though they are going through the experience again (flashbacks), or become upset during anniversaries of the event.

Symptoms of PTSD fall into three main categories:

1. Repeated “reliving” of the event, which disturbs day-to-day activity

  • Flashback episodes, where the event seems to be happening again and again
  • Recurrent distressing memories of the event
  • Repeated dreams of the event
  • Physical reactions to situations that remind you of the traumatic event

2. Avoidance

  • Emotional “numbing,” or feeling as though you don’t care about anything
  • Feelings of detachment
  • Inability to remember important aspects of the trauma
  • Lack of interest in normal activities
  • Less expression of moods
  • Staying away from places, people, or objects that remind you of the event
  • Sense of having no future

3. Arousal

  • Difficulty concentrating
  • Exaggerated response to things that startle you
  • Excess awareness (hypervigilance)
  • Irritability or outbursts of anger
  • Sleeping difficulties

You also might feel a sense of guilt about the event (including “survivor guilt”), and the following symptoms, which are typical ofanxiety, stress, and tension:

  • Agitation, or excitability
  • Dizziness
  • Fainting
  • Feeling your heart beat in your chest (palpitations)
  • Fever
  • Headache
  • PalenessYup. That pretty much sums me up. Except for the paleness, but that is only due to the sunny Cali weather:)

I thought about the lecture I was going to get from Mr. Sparkly Eyes about running so late at night and thought about how I would tell him that I was sorry; but fear is a word that doesn’t exist in my vocabulary anymore. I have already lived through the thing I was most scared of in my life. So now what? What else do I have to fear? Nothing. Of course, I worry about your brothers and Daddy, but when it comes to me… I just don’t give a fuck. I’m not going to live my life being scared of anything anymore because I know whatever else is thrown my way, will be nothing compared to losing you. So , I will run my runs when I want, say the things I feel, swim in the ocean at night, and not be scared. It’s actually very freeing and liberating. To live a life of not being scared of things is how all people should live, otherwise what’s the point? Before all of this, I don’t know if I would have ever taken up surfing, because I was scared of sharks. And forget about running the dark. I used to make up things in my head to be scared of. Well, I’m done with that. At 33 years old, after losing you, I’m done with fear. I’m going to live my life the way you would have lived yours. Head on, embracing every adventure and pushing the limits for the most beautiful outcomes. I will live my life this way for you, because I know as an adult, this is the way you would have grown up to be. Life would have been scared of you.

I came home to your daddy and brothers watching a movie and soon Quinn was ready for bed. We came into our room and as soon as we turned on the T.V. guess what was on, Ro. “Zombieland.” One of our very favorite movies that we used to watch all the time. That’s where you got the saying, “Just you and me,” from. Another one of your little signs. That was one of our favorite things to do in the hospital was watch that movie on your iPad. Quinn watched it for the first time tonight and laughed a lot. It’s a little mature for him, but he has had so much of his innocence taken away that I let him watch it anyway. We cuddled up and watched it together. I held him extra tight for you.

We say goodnight to you every night. Do you hear us?? I hope you do. I’m going to say goodnight now baby. We have an early camp tomorrow again, hoping those brothers will pick up a little more passion and zest for the opportunities that they are given. I just want them to be thankful for being on this earth everyday, with 2 parents who are so broken, but are somehow managing to make this summer as good as it can possibly be. It’s a lot of work, but as a family, we have to do this. For all of us. I know it is what you would want.

I love you little man. I love you to the moon and back. As I was running tonight, I stopped and blew a kiss up to the moon and said, “I love you, Ronan.” I hope you heard me. Life is so precious and I know it doesn’t’ seem like it now, but I am not going to let it swallow me whole. I promise I will start living it again when I am ready. But ready is not now, and I don’t know when it will ever be. I need more time to pass between your death. I still cry all the time, but mostly over being with you that final night and saying goodbye to you. I still tell myself it just can’t be true. You were true and all I wanted was you. Forever. What am I supposed to do without you my little bug?? As of now, I don’t want to do anything except survive and not totally fuck up your brothers with the crazy shit that goes though my head. All I can do is be present for them and do the little things for them that I know mean so much. I will deal with them first, and myself later. I can wait. The damage done to them cannot be undone, which is why when we get back to AZ, therapy will become a big part of our lives. I have to be proactive about this and it is something we are going to have to do as a family, together.

I also forgot to tell you a funny story from last night. I took Quinn to dinner, on a date. We had finished up and we were walking out of the restaurant and there was a family of 5 sitting on the bench and standing up, smoking. I was holding on to Quinn’s had and I looked at them, straight in the eyes, and said, “Smoking causes cancer,” and kept walking. I thought Quinn was going to fall over. It’s like I have no censor anymore and he wanted to know if we were going to get into trouble for saying that. I said for what, “For speaking the truth? Ronan got cancer because he didn’t have a choice.” The fact that people in this day and age, take it upon themselves to smoke, knowing what the risks are, pisses me off. I’m sensitive to this, especially now. I wanted to say, “You should get cancer, not my 4-year-old child who didn’t do a thing wrong in this world.” You make the choice to suck on those freaking cancer sticks, then suffer the consequences. My child had to suffer for not a god damn reason at all except for bad luck. If anyone deserved to live, it was you baby. I will never stop thinking that. This whole things turned out so unbelievably wrong. For everyone involved. Everyone misses you Ronan. Even though you are gone, you are still changing lives. I promise you, a cure for this will be found before I die. I know I made you a lot of promises, but I promise to keep this one. I owe it to you and all the other little babies out there. Give me some time. Some time to mourn you, but when I feel ready….watch out cancer world. You’ve fucked with the wrong mommy and baby team. You are going to be sorry, but it will never be sorry enough for having to lose you over Ro. I will be sorry about that everyday for the rest of my life. Your fire now burns in my soul, you live with me, in my body. I know you may go away now and again, but when you want to come home, I know this is where your soul rests. I feel you all the time.

This is all for tonight my little monkey man. I love you to the moon and back a million times over. Just you and me, baby:) Sweet dreams. Go and visit some of your favorite people. Nighty Night baby boy.

xoxo

“Take away a man’s son. You’ve truly given him nothing left to lose.” Quote from Zombieland

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 🙂

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

Fucking Hot Lava

Ronan. The days without you are so long. It feels like you’ve been gone forever. I didn’t sleep well last night, despite the help of my Ambien. I fell asleep around 1:30 and awoke bright-eyed and bushy-tailed at 6 a.m. I didn’t have anything of importance to do and everyone else was asleep. I showered and headed out the door 2 hours early for my therapist appointment. I wasn’t sure how I was going to kill the time, but I was restless. There was a little light on in my car that said something about one of light needing to be fixed. Normally, I would have put off this annoying errand for a month. Today, I couldn’t get to the dealership fast enough. I dropped off my car and was told to wait inside. Once inside, I headed for the Starbucks coffee line. The barista was having trouble today as her credit card machine was not working. I sat and patiently waited as she complained about this for 5 minutes and huffed and puffed about how it was the worst day ever. I wanted to reach across the counter and strangle her. If she only knew. I left a few of your Rockstar Ronan cards on her table so maybe she would see them and out of curiosity, she would Google you. Then maybe, just maybe, baby; you could teach her what the worst day of your life really looks like.

My car was soon ready and I pounced out the door to head over to see my therapist Sarah. We had a really good session. She is so sad. She reads this blog so she knows the connection you and I have. I feel like she knows you. She gets it so it is very easy for me to talk to her. We talked about you the entire time. How you were such an old soul. How you had taught me so much in such a short amount of time. We talked about your afterlife and if I ever thought I would see you again. I cried a bit, but told her I am mostly just numb. I told her how I am just waiting for my breakdown to happen as it hasn’t yet. I told her I feel like as I’ve grieved for 8 months now and now that it is over; I’m not sure what to do as I am most definitely in shock. I cried when I told her how I hoped you were not scared at all right before you left. That’s one of the things that kills me most; to think of you being scared. I promised I would take care of you forever and I hope you never stopped believing that.

After my session, I met my friend Pam so she could help me get your brothers their outfits for your service. I found what I was looking for and Pam laughed at the thought of dressing your brother, Liam, up in all white as his nickname is “Pigpen,” from Charlie Brown. Liam tends to get a little messy no matter what he is doing and making him wear white on Sunday should be interesting. We got him some Khaki pants instead.

Once I returned home, I came to find your restless brothers. They were begging for their new best friend, Luca, to come over. That is Fernanda’s little boy. They have been spending a lot of time with him. You would love him, baby. He is such a sweet soul. As we were waiting for Luca to arrive, I was in my room and walked out to find you. I asked your brothers where you were. My heart instantly dropped because I remembered that you are gone. I started panicking and it is very hard to be at home, in our house, without you. It all feels so wrong. I knew I had to get out of our house so I told the boys’ we could walk to Uncle Jay’s to go swimming. Fernanda brought Luca over and I took all three boys swimming. I jumped off the diving board for you and pictured you laughing at me. I saw a lot of you playing in the pool with us and thought about how different it would have been with you there. I miss you so much.

After we went swimming, we came back home and played outside. Heidi brought Luke over and pretty soon our house was filled with friendly people. It was good for me as I need the distraction when I am here. Your brothers and their friends played basketball with your Daddy and Uncle Jay. I sat with Fernanda, Heidi, and Tiffany and we talked about a lot of things. Soon, I became restless and jetted out the door just to get out of the house. Gay called me as soon as I was in my car and we decided to meet for a pedicure. I was nervous about it, as all the girls in the salon know you; but I decided to hold my chin up high and go in for you. You would have been proud. Just before I was trying to get up the courage to go in; Mr. Sparkly Eyes called. You must have told him I was having a hard time. I ended up sobbing on the phone to him and he did his usual listening and tried to give me his best pep talk. He asked where I was and I told him I was trying to go inside of my pedicure place. He told me in his sternest voice, to basically get my ass out of the car and get inside. I listened. I am glad I did. The girls greeted me inside with lots of hugs. It was hard; but nice. I then sat with Gay and we laughed a little and talked about you. She has not told her 3 sons yet about you being gone. They are going to be devastated.

I came home to your Nana, Daddy, and brothers. Danielle was here to to bring me Fro Yo and go over some things about your service with me. I was having her help me with the music and pictures. You cannot deny the feeling of emptiness in our house. Tricia stopped by and I went back into the laundry room to do something. Your Nana was in your room and I as I was walking down the hall, she asked me to come in and look at something. I took 3 steps in your room and SHIT. I turned around as fast as I could. Fucking Hot lava. Remember the game we used to play, baby? The hot lava game at the hospital and we could only step on certain parts of the floor, otherwise we would die in the hot lava. Well, your room to me is hot lava and I forget tonight. I am not ready to go in there yet. I screamed something and ran into my room and locked myself in my bathroom. I held myself and sobbed for a few minutes. Your daddy came chasing after me, begging me to open the door; but I would not listen. After some time, I opened the door and ran out into the living room and screamed something at everyone out there about how I didn’t want to look at Uncle Shawn’s stupid shirt that he is wearing for your service because I was not supposed to go into your room. I then ran back to my room and only remember your daddy putting me in my bed and sitting quietly next to me. He spoke about you and how much he misses you. I cried about how I just wanted you back. All I want is you back. More than anything in the world.

You daddy drew me a bath. It was extra hot tonight. I thought about how you would have wanted to get in with me, but it would have burned your skin, baby. It was a mama’s only bath tonight. I sat and looked for you. I look for you all the time. I saw you tonight. You were in the reflection of my white curtains that I had closed in front of my bathtub. I’ve taken a bath in that tub hundreds of times; and never in my life have I seen the light that flickered on the curtains in front of my tub. They have never been there. Tonight, they danced about and I reached out to touch you. We held hands for a long time. I told you how much I love you. I asked if you were o.k. You teased me with your dancing about and I could just hear your little giggle and see those bright eyes of yours. I stayed with you this way for a good 20 minutes. I then told you, “Sweet dreams, baby.”

I am now sitting on the patio with Quinny. It is so nice out tonight and the air is so crisp. I blew a kiss to the moon and told you I love you to the moon and back; because I do. A million times over. It is your birthday soon, baby. We will celebrate you tomorrow. We will celebrate you in the best way we know how. Whatever that means now. It all seems so very strange and very dream-like. Everything is still foggy. Quinny is cold so we are going to go inside in a few minutes. He is taking very good care of your “Gigi,” for you. It still smells like you. I love you, Ronan. I will see you in my dreams. G’nite my love.

xoxo

Dear Friends,

I know a lot of you have been asking about Ronan’s services this weekend. We have decided to do something very small and private for Ronan as we want to keep things as we know how he would have wanted them. Ronan never liked to be the center of attention. We also had to consider our twins in this decision as everything is very overwhelming to them. We have invited only the people that Ronan knew intimately, especially over this past year. You will be contacted via phone call, email, or text if you are invited.

I hope you know how much it means to us to feel the impact our little guy has had in our community and all over the world. We want to include you all in honoring him so we have thought of a way that you can do so. We will be releasing all different colors of balloons at his service at 7:15 p.m. on Sunday. We ask that you all join us, and release balloons as well. Lets fill the sky with love for our Ro baby. We know he will be smiling down from above at all of your beautiful faces. It would mean so much to us and I hope it means just as much to all of you. Again, thank you all for you love and support, especially during this very difficult time. One day, I hope to meet each and every one of you and give you the hug that you deserve.

Sweet dreams, my lovely friends.

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