Tag: Axel & Hudson

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

The path is not clear, as the road is long

I feel like I’ve run a marathon today because of everything I got accomplished with a lot of help from my friends. This morning started off busy and I woke up overwhelmed by everything. We still had not heard back from Dr. Kusher from Sloan Kettering to see if he was o.k. with Ronan starting 2 more rounds of chemo here and then having him rescanned. We were waiting to get the green light from him. I called Fernanda and she said she would be over after she dropped her little one’s off at school to help me tackle my “to do” list. As soon as she got over here we started to go over the things we needed to get done. Soon after, we got a phone call from Woody and I put him on speaker. His exact words were, “I need you and Fernanda to take Ronan to PCH now and demand that they start him on his chemo or else we’re taking him to New York tonight. We left the house as soon as possible and it looked like a bomb went off in it. Auntie Karen was sweet enough to come over and tidy things up for me because I was afraid we were going to have to stay the night at PCH tonight and did not want Woody to come home to a messy house. Thank you to the best fairy godmother in the world. Woody would have had my head if he had seen that mess!! Fernanda and I busted into PCH to explained our situation as best we could. I knew getting them to start the chemo today was probably not going to happen, but we insisted that they put the order in and start it tomorrow at the latest. I don’t think they were too happy with us but we don’t have a choice and waiting even a day to get things going is not o.k.  We finally got everyone on the same page and tomorrow Ronan will start his 7th cycle of chemo; one he has never had before. He will be starting Temozolomide and Adriamycin which are supposed to be tolerated fairly easily. We will do these two rounds of chemo and then take Ronan out to Sloan Kettering for his scans. We are basically buying ourselves more time to make a decision and exploring every possibility for our son. If these two rounds of chemo work, and Ronan has less disease, we are keeping the transplant door open. We are also going to squeeze in a consult in San Francisco, Philadelphia, and New York. We have no choice but to explore everything that is out there.

Ronan’s chemo will be done at the clinic tomorrow and Friday so we don’t have to stay the night at the hospital. We will check in to PCH for the rest of his chemo Saturday-Monday. I feel very comfortable with the plan as of now. I have a great feeling that these two more rounds of chemo are going to give us the results we want to see and will lead us to the direction we need to go. I am so thankful for the beautiful soul of Doctor Adams yesterday in suggesting this. For the time being, we are back on track with a plan. This gives me peace ❤

After we got home from the clinic, Ronan and I took a little nap together. It was so sweet. There is nothing more precious than having Ronan say to me, “I’m going to cuddle you mom.” And then nuzzle his little head into my arm. I wasn’t really tired but he was so cozy and peaceful that I fell asleep with him anyway. My friend Gay came over and helped play with Ronan so I could get some things done. She also got me a phone call with a woman named Karen Kudro. Her daughter, Hailey, was diagnosed with Neuroblastoma at age 5. They did a lot of her treatments at CHOP in Philly and Hailey is a healthy and beautiful survivor. I was so grateful that her mom took the time to talk with me today, even though they are in Disneyworld for Hailey’s Make A Wish trip!! She didn’t have to take the time to call Gay back at all, but did and she gave me a lot of insight that was very helpful. People out in this world are so amazing. I am blown away everyday by the kindness of strangers. Having this happen to Ronan has made me realize that I need to work so hard to be the best version of myself that I can possibly be; even though there are many days that I just want to give up, I just can’t and won’t. I find myself doing things I wouldn’t have normally done in my so called busy life before all of this. There is a lot less unnecessary anger in my life and I have such a high tolerance for not letting the little things get to me anymore. It is much easier to find the beauty in each and everyday than it used to be. The most beautiful things are the simplest.

After Gay left, Stacy called to asked if I needed her to come over to help me get ready for tomorrow. Nevermind that she had just worked a full day and had her gorgeous babies and husband waiting at home for her. I couldn’t pass up the chance to utilize her help. My pile of papers, bills, receipts, has been eating away at me and I told her Woody was about to divorce me over it. She showed up and we tore through everything and got a ton of my to do list done. Talk about an amazing feeling!! I could not have done it without her. Seriously Stacy, you may have saved my marriage tonight;) And my sanity. I can go to PCH tomorrow with a clear head knowing that most of what I need to get done, is done. Thank you my dear friend. I am the luckiest girl alive to be surrounded by these amazing women. Thank you all for taking such great care of us and helping in any way you can even if it’s little things like dropping off a coffee (Heidi) or calling to check if I need anything from the grocery store (Melissa:) Ed- (So excited about the Zico Coconut Water that arrived today!)  I have the best group of girlfriends one could ask for and every second of the day I am so thankful.

I am ready for what the world has to throw at me tomorrow and can go into my day with a clear head. One day at a time, baby steps. Today, I sent my Mr. Sparkly Eyes a text and it said… “Ronan is going to get through this, I just know it. He is so strong.” His response was, ” You and Ro are BOTH going to get through this.” He knows it, he feels it, he believes it. I like to call him my very own Master Yoda and the fact that he believes this is true, tells me my feelings are 100% right. Everybody I know feels this way and that says so much. It’s just like Woody said to me today which made me laugh out loud. He said, “Ronan is a superfucker. It would only make sense that his cancer is too.” He means it in the sweetest way possible… that Ronan is so strong, that of course his cancer is as well. It would only make sense that this is the road we have to take; Ronan wouldn’t have it another way.

Goodnight sweet angels out there. Goodnight Moon. Goodnight Ro Baby, Liam, Quinny Q, and Daddy Woo. Goodnight New York Miss Macy. See you in my dreams. Sweetest dreams to all of you.

xoxo