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

Twinkle Twinkle little star

I had the worst dream last night. It was all about scan day. We woke up and got ready to go. Fernanda was downstairs waiting for us, with coffees in hand and off we went. We arrived promptly, like always, and soon Ronan was called back to anesthesia; I held him tightly as they injected him with his Propofol, and kissed him as he went to sleep. I left him on the table and covered him up with his blanket, Gigi. Out in the waiting room I went and fell into Fernanda’s arms. Leaving Ro for anesthesia is never easy on me, especially without Dr. Maze there to be the one to take care of my little guy. Fernanda and I gathered up our things and pushed Ronan’s stroller up to floor 9 to let the waiting begin. And wait we did. For fucking ever. I think we sat for a good 2 hours. Fernanda tried her best to distract me with her her stories; but there was nothing that could take my mind off of the things to come. Soon, I saw Dr. Kusher, the man I had been waiting for. He was back doing Ronan’s bone marrow aspirations. He breezed right past me without making eye contact. This was my first clue. My stomach dropped to the floor. Fernanda goes, “There he is, let’s chase him down to see what the results said!” I just looked at her and told her no. He knew we were waiting and would get to us when he was ready. By this time, Ronan was waking up from the anesthesia. We went back to get him and my little groggy guy just wanted to be in my arms. I put on his pants and shoes and picked him up. We went back to the waiting room to wait once again, for Dr. Kushner. We sat and waited and fed Ronan some food as he was hungry. As I was getting up to do something, my Claude necklace, the one that I always have around my neck for important days; that has the tooth of St. Claude in it, fell to the ground. It had somehow come detached from the chain and I scrambled to pick it up. I picked it up and tried to figure out where it had come detached. So weird, I thought to myself, as the clasp was not broken. I did my best to ignore the St. Claude incident and told myself it was not a sign. I didn’t even tell Fernanda this which is not like me at all. I tell her everything. Soon, the kid at the front desk told us Dr. Kushner was ready for us. We were taken back to room 7 to meet with him. As soon as I saw him my stomach dropped to the floor. He couldn’t even look me in the eyes. I looked at him and said, “No no no no no no no.” His eyes were wet and he said in his weakest voice something like, “The cancer is spreading. The chemo did not work.” I clutched Ronan, sat down in a chair because I was going to pass out. I don’t remember much more. At some point, he recommended we call Woody on speaker phone. I sat there and listened as Dr. Kushner tried to explain things to Woody. I watched him as his eyes kept getting wet. At one point I asked him if he could please give me just an ounce of hope. Just one ounce… something. He looked at the floor. I went into shock and asked him if this ever gets any easier for him. I told him it couldn’t possibly ever get easier. He got up and turned his back to me. Where did the man go that said he would fight for my baby with everything he had? Because that man in front of me was nowhere to be found. I saw a coward. A man who had completely given up on my child. I somehow gathered my strength and got up. I gave him a hug and told him thank you. I told him he was a good man. I walked out of the doors to his office with Ronan running beside me. Dr. Kushner, the man I had put all of my faith into, had given up on my child and there was no looking back.

Fernanda and I walked back to the RMH. I remember nothing about getting back to our room. All I knew is I wanted to get home, back to Phoenix, asap. I curled up on my bed while Ronan ran around like mad and Fernanda buzzed in the background making travel arrangements and figuring out what to do next. I remember something being said about needing to get me Valium. I remember sitting on the floor playing with Ronan and drinking a coconut water. I remember taking the coconut water and throwing it as hard as I could across the room while I watched it hit the wall and liquid splashed everywhere. I told Ronan we were having a party and I wanted to see if my water would explode. He then took a can of root beer and poured it everywhere to make it explode like a volcano. I think Fernanda got in on the fun and dumped her Diet Coke all over the floor on a blanket on purpose. We sat and had a fucking pop throwing party because what else could we do? It made perfect sense at the time. She then spent the next 7 hours packing up our room, running all over the city to buy more suitcases for all of our shit, did laundry, cleaned our place, got me my Valium, composed an email to Dr. Mosse at CHOP regarding starting Ronan on MIBG therapy and we finally got Ronan into bed so he would settle down to sleep. Fernanda watched as I rubbed his back and he asked me to sing him “Twinkle Twinkle Little Star.” I sang to him our song as I do every night. We all fell asleep around 2 a.m. Our alarm woke us up at 3:30 a.m. as our car was picking us up at 4 a.m. to get us to the airport. 9 suitcases checked later and we were at our gate. The flight was blurry and Ronan slept much of the way. I did too due to the Valium and Ambien. I asked Fernanda for more Valium and she told me no. I cried on our flight and watched her cry by herself in the aisle across from me. She looked like an angel. I woke up at one point and looked down at Ronan and I saw his pinky intertwined with mine. That’s how I know this is all a nightmare and none of this is true. Because his little pinky of his refuses to let go of mine, even when we are both in a deep, deep sleep. As we were getting off of our flight I hugged Fernanda tight and told her that she was the best friend I have ever had and how nobody else would have done this for me. She told me there were a million people who would have done this for me and I then told her yes, but not the way that she did. She came in, in the middle of the biggest storm of my life and attacked it head on and beat the fuck out of it. I have no idea how in the world she did this and I kept offering to have Woody fly out to help us. She looked at me like I was crazy and yelled at me “For what?!?! We can do this! I’ve got it under control!” I’ve learned not to argue with a Mexican Goddess. You will never win.

I somehow made it home, back to the cleanest house possible and to my twins and in-laws. Before I knew it I was in my bed and passed out. I woke up to my husband and 3 boys playing away. The days are blurred and I’m not really sure what is going on. I went out this morning to meet up with my Mr. Sparkly Eyes. I told him how disappointed I was in Dr. Kushner and how I am learning to lower my expectations of people because I set the bar so high. He agreed with me and also tried help me understand that he is sure Dr. Kushner feels like he failed us and is heartbroken. I told him I understood that, but all I wanted was for him to have a bit of decency and compassion which I felt he completely lacked. I just want somebody to be mad at and I know that is not fair, but I have a right to be mad at the way things were handled. Dr. Kushner had his freaking assistant call Woody today to tell him he thinks we should go to CHOP for MIBG. He didn’t even call Woody himself. That is not only rude, but classless. And this is a man that I completely respected, but I have come to find out that when push comes to shove and times turn to the darkest hour, the people who you think will be there until the end for you, can turn on you in a heartbeat. I told Mr. Sparkly Eyes that we refuse to give up and as long as Ronan is still fighting, we will fight as well. He more than agreed and promised to never give up on Ronan, told me that he, himself, is not going anywhere and all I have to do is say the word and he will be at our home to sit with me or whatever I need. I told him how I didn’t know how I was going to write this post, as I have been trying for days but lacked the words. He told me to just be honest, like I always have been. So here I sit, writing the most honest words that I have ever had to write in my life.

I had my house full of my dear friends and family today helping to get everything unpacked. Stacy, Karen, Liz, Fernanda, Heidi, and Mrs. Martin all buzzed around doing everything they could. I don’t think I’ve done much of anything except Heidi got me out for a pedi/mani and I got to see Marisa who met me at my nail salon to hold me.

What’s next? First, I have to wake up from this nightmare because I refuse to believe it is real. Ronan is running around like mad, playing with his brothers and having lightsaber wars with his favorite cousin, Luke. Once I wake up, we plan on getting on a plane this Tuesday to take Ronan to Chop to start him on MIBG therapy. This is a fairly short therapy, but intense. We will get Ronan through this. As my friend, Ed said to me, “It takes one child to change the odds.” That is the best thing I’ve had said to me all week. Until we leave on Tuesday, I’m going to do my best to get thought these next days. I’m going to hug all of my boys extra tight and surround myself with all the love I can get. As much as I want crawl up in my bed and not come out, I have 3 boys, and a husband whom I love more than the stars combined to try to remain strong for. I still have hope, faith, and a belief that Ronan will be the miracle to come out of this.

I love you all. Thank you for your continued love, support and prayers. This is not even close to being over and we will never give up on our Ro.

xoxo

P.S. If any of you ever see that angel of mine, Fernanda Borletti on the streets, at the grocery store, at school, wherever….. please wrap your arms around her and whisper to her that she is an angel on this earth. She deserves a god damn Noble Peace Prize.

Why hello beautiful boy

Today was actually a wonderful day. Wonderful as in we only had to go to the clinic for the standard blood tests and to have Ronan’s broviac dressing changed. We got to see our favorite nurse, Sharon, which is always a treat. Ronan told me today that she is his favorite person to see at the clinic. So sweet he is. This morning he woke me up at 7 a.m. on the dot demanding scrambled eggs, pronto! I tried my best to put him off as I was so cozy in bed but he wasn’t having it. I got up, made him his eggs, and got Quinn ready for school. Liam is still at Mimi and Papa’s due to not feeling well. After Quinny got off to school, I spent the rest of the morning cooking for Ronan and making him food about every half an hour. He is constantly hungry which is a very good thing, but leaves me exhausted and I don’t get much else done around the house. We headed out to PCH and had a chance to talk to Dr. Eshun about Ronan’s scans. He overall seemed pleased with everything but does not want to give us any concrete statistics until we get the MIBG scan done. This will be the most telling of all of the scans. Thursday cannot get here soon enough. After the clinic visit, Ronan was begging me to take him to Chelsea’s Kitchen for lunch. We met Woody there and watched as Ronan chowed down some of Woody’s French Dip, french fries, and his Grilled Cheese Sandwich. I had my favorite, the Ahi Tuna Tacos. Most amazing things ever. I could never get tired of that place. Ronan was happy to be out with his mom and dad and it was a gorgeous day spent with a gorgeous boy who is feeling wonderful. You have no idea what it does to my heart to see him so happy and carefree. Forget the fact that his life has been overtaken by cancer; today none of that mattered. Quinn came home from school and cousin Luke came over for a couple hours to play. The boys played baseball outside and ran around like crazy. I felt like a normal mom for a minute… making them after school snacks, helping with homework, doing laundry, and getting to hear all about Quinn and Luke’s day at school. It’s days like today that the cancer cloud that hangs over my head disappears for just a short amount of time. It is the most wonderful feeling in the world. I made the boys’ dinner and as soon as Woody got home, I headed out to my gym to get in a quick workout. I’d better try to get in as much exercise as possible before transplant starts because I know once that starts, all of my workouts are going to be gone for awhile. Not looking forward to that but I will just have to suck it up and keep telling myself that this isn’t forever. Soon we will have Ronan back and our lives will return to being somewhat the same; but with much more appreciation for anything and everything that comes our way. After going through something like this, the little things are going to seem so less in our life and we have learned what truly matters. I am grateful in a way for this lesson and I have all the faith in the world that Ronan was put here on this earth to teach us these things and to help us change the world. He has such a special journey planned for all of us and we are going to follow his lead. I have learned to just go with my gut feeling with most everything in my life and it always turns out right. I will follow Ronan to the end of the earth and back and feel so lucky to do so. He is the most amazing little boy. Never in my life have I known someone so strong, brave and beautiful and he is all of this at only the age of 3. Just imagine what he is going to be like as an adult. I cannot wait to see what life has in store for him.

I have learned that my days now are filled with both sadness and beauty. I am o.k. with that because I try so hard to make sure the beauty outweighs the sadness. Maybe Ronan was born such a beautiful boy for this purpose… because this has always been what his journey in life was meant to be and being so beautiful, would help me get through this?? Never has a more beautiful boy existed and I am not just saying this because I am his mother. I am not biased, this is the truth and I now know it was for a very special reason. All I have to do when I am feeling too sad or scared is look into his big blue eyes and my fears melt away. The look in his eyes tells me over and over that he is going to be fine. I truly believe that with every part of my mind, body, and soul. Everyday, I am finding things I am thankful for and it reminds me how precious life on this earth is. Ronan is a gift and I am so happy I get to share him all with you.

That is all for tonight. I am going to hot yoga with Stacy at 5:30 a.m. in the morning. Told you I’m taking full advantage of my freedom and what better way to start my morning than drenched in sweat and tears. Love you all my dear friends. Sweet dreams of peace and happiness.

xoxo

Love my name
Love left dry
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Soon comes rain
Dry your eyes
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Skeleton me