My little reading crasher

I awoke this morning from an email from my friend, Diane, who lost her little boy, Jack, to Neuroblastoma, a few years ago. She and her husband, Ed, held our hands through this entire process and are still continuing to do so. Something that I know cannot be easy for them. The four of us unfortunately, share a very special bond, but there is no one I would rather share it with then two of them as they are an amazing family. Diane’s email was from late last night, and she was wanting to know if I was up. I didn’t see it until this morning but as soon as I read it, I called her right away. Every year, Di visits a “Medium,” and she started doing this a year after Jack passed away. I totally am into this sort of thing and I know when the time is right, I absolutely plan on finding the right person to go to. Di went a couple of weeks ago, after Ronan had passed away and she told me that Ronan totally crashed her reading. Her medium went on and on about this little boy who is now with her son, Jack, and has a large crowd of peeps surrounding him. She also told Di that Ronan knows I write to him and it makes him happy and he knows it is helping me process things. While I was listening to Diane tell me these things, I was sobbing hysterically. There is not much I believe in anymore at this point in my life, but I totally believe that Ronan can hear me still. Maybe that is why I cannot seem to stop writing to him, because this entire time, although I didn’t even think of it this way, he can hear me and knows what I am writing to him. I don’t know where my writing comes from. It is something that just pours out of me at night from my heart and soul. It is something I cannot seem to stop doing and maybe this is my way of really communicating with Ronan. It is our way of staying connected. Whenever I sit and write, I feel so connected to him. I sometimes feel like he is the one putting all the thoughts in my head. He is the one who gives me the strength to continue doing so. This is one of his many gifts to me. All I know is I can’t seem to stop and I don’t want to. It is cathartic to me and Ronan knows this, so he continues to inspire me and push me. As long as I feel like I have things to say, I will continue on. What I write may not always be easy to read, and I so appreciate all of you for staying with me and not judging me. What I speak is the truth, raw, and real. It is the way Ronan would want me to continue on with his story. He never held back a thing; something I would like to think he got from me. He wouldn’t have my writing any other way. So Ronan, my very special soul. Thank you. Thank you for crashing Di’s reading and letting her know you are o.k. I know you are because of all the love that still surrounds you. I know I will see you again someday, little man. But now, I have to work my ass off on what we set out to do from day one of your diagnoses, which is raise awareness. I will not stop until things in pediatric cancer have drastically changed. I will fight harder for you than ever because I have to make you proud and I promised you we would tackle this together until people listened. Even though you are gone, I know you will be working just as hard with me right by my side. Together, we can do anything.

So, Ro. After I got off the phone with Di, I woke up your Daddy and Quinny so we could get going on our day. I got Quinn all ready for Legoland and Mimi, Papa, and Liam came to pick him up and off they went for their little adventure of the day. They had a great time. Your daddy and I got ready to head out to meet Denise from your favorite clothing line, Fore, Axel&Hudson. We decided to meet her in Laguna and I was so quiet on the car ride there. I was feeling such a mixture of emotions. I was anxious, excited, happy, but also really, really, sad. I have talked with Denise for months now and one of the thing I always said to her was how I couldn’t wait for the day to come when she could meet you and see in person and see how adorable you looked in her clothes and hats. Nobody could pull off a Fedora like you, Ro. Having to meet her today, was devastating to me without you. On our drive there, as we had just gotten to Laguna and we were driving in town, the tears were streaming down my face. I was begging you to give me a sign that you were with me. I was staring out the window and on my right was a store called, Esther. I almost couldn’t believe my eyes. I mean, how often do you hear that name and just when I was wanting a sign, there it was. 2 minutes later, I looked to the left and there was a store called To the moon. I couldn’t ask for a bigger sign than that Ronan. You and Esther together in Laguna. How random is that? It was almost so amazing that for a slit second I thought I made it up in my head. But I didn’t. I can’t wait to tell Doriet about this. I know this will make her as happy as it did me. I know the two of you are together.

When we got to Denise’s brothers place today, and I finally got to wrap my arms around her, everything just felt right. You would have loved her. She is one of the most real, pure, kind-hearted people I have ever met in my life. Everything she has done for you has been out of love for a little boy that she didn’t even know, but you captured her heart. Your daddy and I told her how happy all the clothes and hats she would send, made you. You were always so proud to wear them as you should have been because they are the so special and unique, just like you. We had a beautiful lunch and Denise wanted to know a bit about what we wanted to do with your foundation. We explained to her that research was our number one goal. I told her how I cannot get Gisele Sholler out of my head, even though I have never even met the woman, but she was the one who was going to help us in the end. I really want to meet her and I am really interested in the cutting edge things she is coming up with for Neuroblastoma. I also talked about Dr. Mosse at Chop. I believe in her and what she is doing as well. I believe in Dr. Kushner too, but my personal feelings are getting in the way of wanting to help him, although I know I should put these aside because he is a brilliant man. Like I said, when the time is right, we will know. I know you will help us make this decision. Funding research is our number one goal, but raising awareness is where my heart is truly at. Something has to be done to make people open their eyes. Baby steps, Ro. But we will get there, I promise my love. After talking to Denise about what we are considering, she had a proposal for us. She said she has talked with the two other owners of her company and they really want to get involved and make a difference. They have decided that they want to design a line of hats in your name and they want me to be involved in the design process. With a part of the proceeds going to your foundation. She had both your daddy and I all choked up at lunch over this. What an amazing thing to be a part of. We are so honored. The fact that one simple message from me, and this company jumped on the chance to help out by making you so happy with all the fancy clothes you used to love so much to wear, and they wanted nothing in return but your smiles. As of now, Neiman Marcus carries their line and The Garage in Scottsdale. They say certain people are put in your life for a reason, and it is clear that Denise is going to be a big part of our lives. I feel like I’ve known her forever and the connection that you have given us is such a blessing Ronan. We felt you all around us today as it was the most gorgeous day outside. I know it was you, smiling down at us. I know you were with us all day long. After a wonderful afternoon, it was time to get your daddy to the airport. He headed back to Phoenix today and it was hard to see him go especially after how emotional we both were today. I hate the fact that he is at our home, without us. But I know he is there with you and your ashes, so that makes me feel better. I hope they bring him comfort like they do me. I know you will take good care of him tonight and play with him in your dreams like you have been doing.

I came back to our condo and put on my running clothes for my nightly run. It was much needed after today. I only put in 4 miles again, and they were fast and easy. My running seems to come easily to me now because all I do is think of you. Time passes quickly that way. I didn’t do my nightly swim as I was wanting to get back to pick up your brothers from Mimi and Papa’s. They are both sound asleep, tired from their long day out. We all take turns sleeping with your blanket and Liam has it tonight. We treasure it so much.

Time to try to get some sleep, Ambian induced of course. I am convinced this is why I am not dreaming of you…. because it puts me into such a deep sleep. I am too scared to try to sleep without it now. Someday, but as of now, I’m not ready. I will know when I am ready to try to sleep like I used to. If I don’t take it, I stay awake all night and just sob about you. It’s too painful and I need the sleep to get me though the days. It takes a lot of energy to try to hold it together and being sleep deprived is something I don’t think I can mix into this madness now. I know you know this, but I miss you so much. I think about you every second of the day. You will always be a part of our family and we will never forget how you lived your life with such pride and dignity and you were never scared. Everyone could learn so much from you. You never felt sorry for yourself and you never stopped fighting; until I told you to. Thank you for listening to me for the first time in your life. As much as I wanted you to fight forever, I had to let you go to be free of your pain. Whispering those words to you was the hardest thing I’ve had to do in my life. But you loved me that much that you honored what I said to you. I am so thankful for that. I had to let you go and live your new life, the life you deserved to live here with us. I know you are free now and as sad as I am, I am happy for you. So go and play, baby. Go and cause all the trouble in the world and know that I will always be right by your side, loving you every second of my life. I will see you again, I promise you. I dream of that day, Ronan. I have a lot of work to do first and it starts with your daddy and brothers. I have to make sure they are going to be o.k. I worry for all of them and we have so much healing to do. Everyday that I see your brothers smile, it gives me hope. I am so lucky to have them and so were you. We all know this and treasure our time with you so much.

G’night my little man. Go spread your love around tonight and visit everyone who loves you so much. Twinkle Twinkle my baby star. I love you to the moon and back.

xoxo

Salt on an open wound

 

 

Ronan. Life goes on. One thing I am learning, is no matter what happens in life, it goes on. I hate this. I want everything and everyone around me to just stop. It’s apparent that this is not going to happen. I had no choice but to wake up today. It happens to me every morning, over and over again. Like groundhogs day. I woke up to the sunny sky and the ocean breeze. I told your daddy that we should go to The Hash House for breakfast. Do you remember when we went there a couple of summers ago? I think you had just turned 2. You were at that age where you would never sit still, but I somehow managed to keep you entertained as we enjoyed our breakfast. My friend, Kelly, took us with her husband and little girl, Gracie. Seems so long ago, Ro. But it wasn’t. I sat on a bench this morning, while we waited for a table. There was a mom sitting right next to me with her baby girl who was just 6 weeks old. I didn’t even know what to feel. Normally, I would have been all over this mom and sweet, new baby girl. Instead, I sat there quietly and tried to ignore her. Today, I felt a mix of jealousy, sadness, and emptiness. I thought about you when you were that little and what a gorgeous baby boy you were. I wished I could turn back time to have you all over again, as a baby, even if it still meant you ended up dying of cancer. I would do everything we just went though with you, all over again in a heartbeat. I don’t care how hard it was; at least you were still here. At least I still got to look into your big blue eyes and hear your little voice. I can never have those moments back now because some asshole named cancer has stolen them from me. I still can’t believe you are gone. I still cannot believe things like this happen in this day in age, especially to kids. Especially to you.

After the Hash House, we ran some errands. We then came back here and had a kind of lazy day. I took a nap with Quinn and your Daddy worked while Liam played on the iPad. It was a quiet day. The days I hate the most. We went over to Mimi and Papa’s condo for dinner. Liam is sleeping over there and Quinn is here with us. I can tell he is missing you so much. We watched some videos of you on my computer tonight from when you were about a year old. You made Quinn laugh like no other. He laughed so hard tonight as you ¬†were up to your usual mischief and Quinn was your favorite target. He loved all the trouble you used to cause so much. I never thought I would complain about having boys that are so well behaved, but I am going to tonight. I miss your trouble making ways and the way you and Quinn would cause it together. Now, Quinny has nobody to cause mischief with as you know Liam is such a little rule follower and gentle soul. I cannot describe to you the absence you have left in all of our hearts Ronan. It’s like a whole new life. I life none of us ever dreamed of or wanted. A whole new, unwelcomed life where we have to struggle everyday to fill our days with something to make us smile. Today, we smiled over talking about you. Today, we cried about missing you too though. Those things seem to go hand and hand.

Tomorrow. Tomorrow, I actually have something to look forward to. Mimi and Papa are taking Liam and Quinn to Legoland which they are so excited about. Your daddy and I are going to drive to Laguna to meet up with Denise from Fore, Axel & Hudson. She is part of the amazing company who sent you all of your adorable hats and clothes. I have wanted to meet her for so long and we have been trying to coordinate meeting up. I can’t wait to give her the biggest hug for you. I need you to be with me tomorrow, baby. I cannot do this without you. As much as I am so excited to meet her and to tell her thank you in person, it is going to be hard not having you with me. I used to dream of the day that we could both meet her together, after we had gotten you all better. Your daddy is going with me so I will have him there to hold my hand. We will watch for your little signs all day tomorrow to know that you are with us. It will be the first time in a long time that your daddy and I have spent alone; just the two of us. I hope I’m not a wreck; it is hard for it to be just the two of us. Hard for me because I know your daddy is hurting just as badly as I am so it is like looking at myself, in a mirror, with my heart ripped out of my chest. The two of us together, alone, Ronan. It is just plain sad. The times that it is just the two of us, we basically just sit around, stare at each other and cry. I look in his eyes, and I see your eyes. Someday, I hope this will make me happy. But as of now, it’s like pouring salt on an open wound. Too much pain, everywhere.

I ended tonight by turning on the T.V. which I rarely to anymore. A movie, that I used to love, “Life as a House,” was on. Oye Vey. Bad idea to watch that movie. So good, but so sad. And of course it has to do with cancer. It was like a bad car accident though. I couldn’t stop watching or turn it off. I ended up bawling my eyes out. Cancer is just awful all around which is why things have to change. We are on to something though. That event for you, The Brightest Star in the Sky, that was put together in just a few weeks, raised 50k for you foundation, Ronan. 50K! I can you believe that?!?!?! I am still in shock and I am already hoping to turn this into an annual event. Think of all the awareness we are going to raise! My friend, Carolyn, said it was because of my words and your eyes that the event was such a success. I think she’s on to something. I’ve got a message to get out there and your beauty is going to help me do it. I was talking to Mr. Sparkly eyes today and you know how he is with his words. They always hit me hard. Today, he called me powerful. I laughed out loud at that, because I have never thought of myself this way. But after thinking about it, I feel like being powerful is something that I know I can be because I do have the passion and you on my side. I will use my power to make people aware of Neuroblastoma. Something most people have never even heard of. I am going to use my “power” in such a positive way and make such an impact. I have no choice. You will forever be my inspiration, my hero, my role model in life. You have changed me forever. Thank you, little man.

I’m going to snuggle up to your brother and your blanket, GiGi. Miss you so much, Ro. Sweet dreams. Come and cuddle with me tonight. I love you.

xoxo