A mushy messy update because too much has been going on.

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Ronan. At the moment, I am feeling defeated. And really lost, lonely, used, and sad. I look around in the world and all I see are these fake plastic smiles. People who pretend they care, but they don’t. People who say they do, but they don’t. And just when I am coming up to get some air, I get the most devastating news delivered to me, since your death. I don’t think this is my news to share as it hit a little too close to home. I don’t think I need permission to share what it is that is going on, but I’m not feeling right about sharing it on here at the moment. I need to talk to the people in my life that I am closest to about how to handle all of this since this is my very open and honest blog, and when I talk on here it is about what is impacting my life at this very moment. I’m just not quite sure how to handle this. At this point, I am beyond heartbroken, scared, and sad. My family has been through so much. We don’t need anymore pain, but we cannot seem to escape it. I’m just so tired of it all. I’m just so tired of being sad, mostly. I’m learning to rely on my old friends more and seem to be wanting to keep them as close as I possibly can. The ones who I can trust and the ones who won’t let me down. The ones who are my family.

Just when I think my days cannot get any worse as I am trying to absorb the news that I have been hit with, your baby sister looks at me and rolls over for the first time. She feels me with hope, happiness, and a light that nobody can destroy because no matter what happens, she is mine and I am hers. I look at her, take a deep breath, and watch her little eyes fill up with a love that I have not seen in such a very long time. Eyes full of innocence, light and love that know no pain. Her eyes remind me so much of yours. I spent the weekend in a fog but a productive fog like always. Basketball games, time with your brothers, family things. I was out and about with Poppy, running errands in the retched heat. A lady came up to me in a parking lot, telling me her sad story and asking if I would buy her food. She was telling me how hungry she was, how she had lost her house, her life, her everything. I loaded Poppy in the car, grabbed some cash out of my wallet and handed it to her, but I couldn’t even speak. She then said to me, “Bless you child, bless you.” I looked up at her, my eyes filled with tears and I wanted to scream, “But NOBODY is blessing me! My son is dead, and now I am dealing with x,y, and z!” I screamed those words over and over in my head instead of out loud while I drove away into the hot bursting sun that looked like it was going to explode.

This is the part where I say, I know I am blessed to have the things that I have Ronan such as your brothers and sister, of course. I never forget that. But, I think I am entitled on some days to scream that I am in fact not blessed at all because I’m still just so mad, sad, angry and hurt over your cancer, all you went through and that you ended up dying anyway. Some days I am not blessed because I am still too blinded by the never-ending torture cancer killed my baby and I just want you back. And just when I am feeling like all hope is lost, something amazing appears out of the blue, only to be sent by you.

So, I started this post a little over a week ago. I have decided not to go into much detail as to what is going on, as I want to be respectful to my family. Nobody is hurt as of now. My brother is struggling with some issues, but thanks to my mom and her never-ending dying love for her children, he is safe for now. It’s no secret that my brother and I have not had the closest relationship, but at the end of the day, I love him and his sweet soul. I am begging you, Ronan, to help him get through this. I spoke to my brother on the phone a couple of days ago. I begged my mom to make him talk to me. He was resisting. She held the phone up to his ear and I just simply said, “Hey. I love you. I am here for you no matter what.” He told me through is his tears that he knew this and he loved me, too. I then said, “I am proud of you and I know you can do this.” I hope he carries those words with him and all that is he about to go through. I hope most of all, Ronan, he carries you with him and remembers your big blue eyes and how strong and brave you always were. I hope he can channel a little of your strength so he can come out of this healed and ready to start his new life that I know he is so capable of. I am so thankful for my mom for so many reasons, but today I am thankful for her because she single handily has saved my brother’s life. It’s up to him now to do the rest and I just hope and pray that he comes out the other side of this, Ronan. I know you will help him through this the best you can.

So, after my pity party week of feeling super sad, lost and alone, of course something magical appears as it always does when I need it the most. Remember how I told you that amazing company SpiritHoods jumped on board when I asked them to make a Spicy Monkey Hood in honor of you? WOW. I had no idea what this was going to turn into, but Ronan, I think we just did something big. Something so very big that is going to help change this world of childhood cancer that everybody seems to just ignore. I got a very last-minute email from the founder of the company, Alexander. It said something like, “Hey, I’m in Vegas next week, can I come from there to meet you?” You know my rule about never saying no to things, right? I try not to anymore. Ever. So of course I said yes even with everything that I have going on. Plans were made, and as always, I was not sure what to expect, so I just hoped for the best.

Do you know those moments in life when for a spit second, everything just feels right? That’s what if felt like for me the second I finally got to wrap my arms around Alexander and his stunningly gorgeous wife, Shay. Alexander is the founder of SpirtHoods and Shay is his wife, side kick and partner in everything. The two of them, combined, are beyond magic. We spent some time getting to know one another, but honestly I knew from the second I met them, that I have somehow, somewhere, known them before. Or maybe you knew them, Ronan which is why I felt so close and so at ease with them. I’ve been holding some things back in regards to your death and saving them for just the right people, the right moment, and the right time to do something really amazing and powerful with. I have no doubt in my mind, Alexander and Shay are just the right people to share our everything with.

The Spicy Monkey SpiritHood that was only just a dream of mine, is coming true. With 100% of the proceeds, going back to your Foundation. I am so thankful and humbled to be partnered up with this amazing organization. But the SpirtHood is only the beginning. After we got to talking, an idea came about because Alexander believed we could really take this story, to the next level. So, we made a short film. And a long documentary, as well. One full of days and nights of real footage, B-roll footage, interviews from our dearest souls, not a lot of sleep, lots of tears, sadness, laughter, honesty, love, and what day is it today?! Ronan, it is going to be so powerful. I held NOTHING back with all the sadness, truth and pain that the world of childhood cancer is really about, but nobody wants to show.

Little man. I will finish this post and this story, but not tonight. I started this over a week ago but between all that has been going on, I have not had the time to finish. Book writing is #1 priority right now, after your sister and brothers, of course.

Poppy and I took the red-eye out to NYC a couple of days ago. We needed a break before September, so to the Hamptons we went to see our Fairy RoMo. I so needed this break. I so needed to clear my head. I so needed to spend some time with one of our favorites and your Poppy sister’s Godmama. It’s lovely here. Beyond words.

I need to get some sleep. Everything is fuzzy and hurts. I’ll finish the rest of this, tomorrow I hope. Just wanted to give you some sort of an update.

I miss you. I love you. I hope you are safe.

xoxo

 

The silence scares me because it screams the truth

A week. It’s been a week of sharing a room. Hospital beds. Hospital clothes. Hospital T.V. Hospital seconds/minutes/days/nights. Hospital tears. Hospital depression. Being home last night for the entire night with my twins felt so good that it hurt. I took them to breakfast this morning and we looked just like the perfect little family. Just another mom with her sons’ on a gorgeous Sunday morning, happy, smiling, laughing. Nobody in the restaurant knew the reality of my life. They didn’t know that soon my horse-drawn carriage was about to turn into a pumpkin. They didn’t know about the 3-year-old that I have with cancer who was waiting in his hospital bed for his mom to return. That’s my reality everyday and nobody knows the pain and sadness that comes with it. It hits me hard during times like this… when I get a second of my sweet life back and then have it ripped away from me once again. I fucking hate hospitals. I fucking hate RSV season. I fucking hate cancer and all the time it is stealing away from my family life. How lovely that I was able to go home last night and spend 30 minutes with my husband and try to act normal the way a husband and a wife do, but then that turns into him saying to me while looking at an old picture of our 3 boys… “I just keep thinking, did he have cancer then? Fuck. How long has he had this?” That in turn makes me cry and I get to sit and stare into my husbands eyes as he watches me cry because some days are harder than others. Today is one of those days. Do you know why my little 7-year-old who was exhausted from the days events stayed up until midnight  with me last night insisting we finish watching “Talladega Nights?”  He told me he didn’t want to go to sleep because he didn’t want the time with me to end. I couldn’t agree more and he is so right in the way he is feeling. Just pile that on top of the things that are ripping my heart out at the moment and smashing it on the floor.

Today, I couldn’t pull my shit together and had to have my friend, Gay, come and sit with Ronan so I could get out of the hospital for an hour and cry my freaking eyes out. The tears wouldn’t stop pouring and I thought getting out of the hospital would help; but it didn’t. It’s was one of those day. Bloody, bloody, Sunday.  Sarah the Saint stayed with Liam and Quinn all day today so I could come back to the hospital and Woody could go to the office and work for the entire day. Ronan has been a handful with a lot of energy, but is still not wanting to leave his room. He keeps talking about going home and wants to know why he can’t because he says he is all better. I try my hardest to explain things to him as simply as possible but he doesn’t get it. None of this makes sense to him and it shouldn’t.

We still have our baby roommate, with no parents in sight. The nurses have been working non-stop tending to him. The second they try to put him in his crib, he starts to cry and will not stop. Poor thing. All he wants is to be held. Makes me sick to my stomach. Reminds me to be thankful. Thankful. Thankful. Thankful. Things could be so much worse. Ronan’s counts were still around 50 today. The same as yesterday. They have got to be higher tomorrow… I don’t expect a major jump, but in the low 100’s would be nice. We just want to go home. We have isolation coming up soon and this is cutting into our time with Liam, Quinn, and Woody.

I’m being rotten tonight and I know it. Time for a positive attitude adjustment. I feel better after my day of tears. Guess I just needed to clear my head and let some things out. I’m going to snuggle up with Ro now and do my favorite nighttime activity which is to watch him sleep and wonder what that sweet little soul is dreaming about. I hope only beautiful things. G’nite dear angels out there. Thank you Sarah and Gay for your help today. I don’t know what I would do without you two. Love you.

xoxo