Fiesta of Tears

Ronan. Hi little man. I missed you so much today. We had a lot of things going on that kept us busy at the beach. I packed the car full of your favorites; Quinny, Liam, Macy, and Nana. We ran a couple of errands and stopped at Costco on the way back home. It wasn’t very exciting, but it was nice to be out. We had to hurry back to get your brother, Liam, packed to go to Washington to see Papa Jim. It was kind of a last-minute decision, but he really wanted to go. I’m trying to look at this as a positive thing, but I am mostly just upset about it. I’m upset in the respect that if you would have been here, we would all be there together. I am upset in the respect that we have to be separated from Liam. It makes me most upset that our family is now broken, damaged, and so sad due to losing you. This is the first time in Liam and Quinn’s life that they have ever been away from each other on a vacation. It all feels weird and wrong. Thank GOD I still have Macy here as well as the Kotaliks. Quinn is getting a lot of time with the girls in and he is eating it up with a spoon. I talked to Liam and he arrived safely. He sounded so excited to be there. Papa Jim will bring him back Sunday night and the will stay a few days with us. That will be fun. I only wish you were here to play with all of us. For a split second, I thought that you would be and I imagined you playing outside with him. But then I remember. The fucking one thing I want not be true…………is.

I hate cancer. I texted that to Mr. Sparkly Eyes tonight. Blubbering about how this is the first time in 14 years that I have not been home during the summer, how it is the twins’ first time being separated during a Washington vacation. How I hated cancer and how I was having a pity party. He replied back he does too and I am allowed to have as many pity parties as I need. He was so sorry. Everybody is sorry and sad. I hate that too. I hate the sadness that people now feel for us. I don’t want people to be sad around us. I want happy back before all of this existed.

Ro. I have to cut this short tonight as my Ambien is really kicking in. Also, that I have Macy and Quinn asleep beside me and they both seem so snuggly. I am tired. I miss you so much, boo. I hope you are safe. I’ll talk to you tomorrow. Please give Esther a kiss for me. Her mommy needs her tomorrow as it has been 2 months since she passed away. Make sure she spends some time with her tomorrow, o.k. Ro. I love you to the moon and back my sweet baby. Time to go into my Ambien coma now. The numbness is the only way I can fall asleep.

xoxo

Ronan. Hi baby boy. I think I started this yesterday. Last night maybe. I can’t really remember. Everything is blurry. I’m not sure how the days have been filled, but somehow they have been. I think a majority of my time is being filled with keeping Quinn busy and happy. Macy is doing a great job of helping me while your daddy and Liam are away. She is here with me still. I am so glad; she makes everything better. Today, we woke up a little late to the blaring sun. We decided to take Quinn out to Carlsbad to go Strawberry picking. We go there every time we are in San Diego during the summer. We were on our way, almost there, but I had to stop for gas. I decided to get a car wash too so we just ran through a little drive through one. We were sitting there and I was telling Macy how you used to love to go to the cheap drive through car wash in Phoenix with me. I remember it like it was yesterday. I started to cry and so did she. Quinn just sat in the back quietly and watched us. Thank god we were distracted by a very minor “the car wash just ate the gas cap of my car emergency,” otherwise, I think we would have both sat there forever, crying. We took care of our situation and headed off to pick our Strawberries. It felt so wrong to be there without you today. I remember the last time we were there, with you. I snapped pictures of you and your brothers in the Strawberry fields together. Today, Quinn was an only child and I watched him as he wandered through the day without you and Liam. It made my heart heavy.

Quinny is stuck to me like glue. And not in a good way. Poor little guy. He cannot leave my side for 2 minutes. This has been going on pretty much since your funeral. It has gotten really bad over here though. I am doing my best to be patient with him as I know he is so scared. I am trying to talk to him about everything as much as possible, but I have mostly just been smothering him with love and attention that he seems to be craving so badly. He worries so much about everything… especially when I leave to go on my runs which is pretty much the only time that I am away from him. We have a lot of work to do when we return back home as far as getting us all into therapy. I am trying my best while we are here to work though things with him, but there is only so much I can do. Having Macy here for as long has she has been has been really helpful with everything. She is so good with me, the boys, with the Wooddawg. She is scared for us though. She told me last night about how hard it is for her to watch us all try to go on with our lives. How unfair this whole thing is and how she see’s the toll it is taking on our entire family. She is watching me struggle to breathe every second of the day. She is watching as I continue to push everyone away. She is watching as I continue to drown. I know what I look like. I know what it looks like from the outside because I often feel like I am watching myself from above my own body. I see myself, from above, all the time. I see myself under the water, trying to get to the surface for air, but I never do. I watch the bubbles reach the top, but never my body. I watch my eyes and I can tell you that I can see them crying the tears I cry, while I’m trying to get to the surface for air. It never happens. I see my eyes, and the bubbles and the dark, black ocean. I see Ronan. I think about this a lot during my runs when I am having a hard time breathing because I am running so fast. It makes me run faster. So does the thought of my “slayer,” attacking me. I daydream about that…. about the day that someone will come out and grab me on one of my runs and they will kill me, but not before I have the time to send Woody a text message saying how much I love him, Quinn and Liam, how they are all my soul mates but I have to go and be with my other soul mate now. Which is you, Ro. I daydream about the day I will be reunited with you all of the time and I go over all the different ways in which it could happen. I’m not scared of it. Even when I picture my eyes as I am drowning in a sea of black water…. my eyes are still vibrant green and they are happy; even though they are filled with tears. I’m not scared of death anymore. I watched you die right before my very eyes. I know when my time comes, it will be a beautiful thing and you will be waiting for me on the other side. I cannot wait for that day, until I see your little face again. To kiss your sweet lips and to hear your squeaky voice. I miss you so much.

After the Strawberry fields, we had nowhere special to be. We decided to drive down PCH and enjoy the scenery and sunshine. We opened the sunroof, blasted Pearl Jam, and watched the ocean come alive with surfers, people, birds, and sparkling sand. We stopped for lunch at a little Mexican food place as none of us had eaten today and Macy said she could not take being on the “Maya diet,” for one second longer. We sat and ate and started to talk about you. We talked about Dr. Kushner and have decided that the way he was with us, is just his personality. He cuts off all emotional ties when he knows the outcome is not going to be good. He has had to desensitize himself so he can do his job, the best way he knows how. Unfortunately, that means often making people feel more awful about their situation and leaving them feeling let down, helpless, and regretful. He is like a robot as I’m sure he decided a long time ago this is how he was going to be when he decided to become a Pediatric Oncologist. That still does not make it right and I will  have my sit down with him and he will look me in the eyes. I promised Ronan and myself. I will get this done. Sooner, rather than later. I want to go out there in the Fall. I’m not going to put this off.

I was telling Macy about your amazing hair color and how I was so sad she never knew you when you had hair. We started looking at pictures on my phone of you and the tears started again. At one point, I was so consumed by guilt for being in San Diego, at the beach, when there are so many sick kids with cancer right now. I felt like running right to the nearest hospital just so I could be in the presence of all of those amazing kids. I felt guilty that I wasn’t doing something for them, at that moment. A lot of the guilt came from knowing I was sitting there with Macy and Quinn, with the sunshine on our backs, the memories of you flooding in, and how many kids are trapped in hospitals and do not have the freedom that we do. I don’t like this freedom I have without you, Ronan. It gives me major anxiety and I will never be able to enjoy it again. I look at people around me, who have no clue, and they are just so happy. Happy at the beach, happy together as a family, happy because they all still live in their little bubble of a world. It makes me want to throw up. In fact, I did throw up tonight after we came home. Just driving through the town of Coronado is enough to do me in. I get so sick to my stomach that we are here and you just died almost 2 months ago. FUCK. July 9th is coming up soon. It will have been 2 months since you passed away. That is not going to be a fun day. Please watch over me on that day, Ronan. I know you do everyday, but especially on that day. I hope you were with Esther last night. I wish I would have dreamt of you two, together. My dreams are black and empty. Just like my heart.

After our fiesta of tears, we hopped back in the car and continued on our way. We ended up pulling over in Del Mar to enjoy the amazing beach. Quinn, Macy and I all held hands and ran to put our toes in the sand. It was such a gorgeous time of day and the beach was breathtaking. Quinn took off, alone, and went to find some rocks. He never does things alone and I could see the sadness on his face as he had to do all of this without you and Liam today. He soon came over and asked if I would help him. I said of course and off we went. We ended finding some really pretty rocks for his collection which he is so into right now. He was so proud of them. Macy and I could have eaten him up with a spoon today. He really is everything, kind, sweet, and full of nothing but love. As I was getting my purse out to pay for parking at the beach today, Quinn goes, “I have money in my wallet, mom. I can pay for it.” Cutest thing ever. He has saved up his money and has offered to pay for anything  and everything. I keep telling him no, to save his money, but I know how proud it would make him to buy a little something for me. I’ll let him leave the tip at a restaurant or buy me a coffee soon. What a gentleman. Some girl is going to be very lucky one of these days.

We finally got home around 7:30 and everyone seemed pretty tired. We put in “The Wedding Singer,” and watched it together. Now, Quinn is in the middle of Me and Mace. They are snuggled up together so sweetly. Macy is like the sister I never had; but I should have. I totally have that sisterly connection with her and it has always come so naturally to us. I swear I’ve know her in a past life as well. Maybe we were sisters then. There has to be something….. the way we met, and had an instant bond. The way Ronan loved her so much and we all know how picky he is about people. He took to Macy instantly too. He knew Macy in a past life too; I’m just sure of it. I feel like the new people I’ve really, truly, deeply connected to since all of this, are people that Ronan and I have both known before. I’ve got my list….. there are about 10 people on it. I will forever hold these people close to my heart as I consider them family now. It’s as if I have a whole new family, thanks to Ronan. Just another one of his little gifts he has left behind. You, my son, amaze me everyday.

Alright my little man. It’s late and Macy told me I needed to go to sleep early tonight. Early means 2 a.m. not 4 a.m. I’m going to snuggle up with them now. I wish you were here to snuggle with us. I miss you baby. I hope you are safe. Sweet dreams my favorite blue eyed boy. I love you, Ro.

xoxo

  

Sunday, bloody Sunday

Ronan. Sunday has always been my least favorite day. Sundays to me are depressing, sad, and I’ve never liked them. Why should today be any different? Let’s start with the fact that I didn’t fall asleep until 6:30 a.m. I had an awful night last night of worrying about you, about life, and I couldn’t get myself to wind down. I ended up popping an Ambien at 5:30 a.m. I was being stubborn because all I wanted last night was to fall into a blissful, non medicated sleep, and dream of you. Instead, I fought off the demons that now live in my head until I could take no more. Ambien induced sleep soon came and as I was halfway between being awake and sleep, I was holding my phone looking at pictures of you. I remember falling asleep and I was touching the screen on my phone with a picture of you smiling. I swear the picture came alive and you were moving, laughing, and smiling at me. I played with your face on the screen of my phone until I finally went into my coma. I don’t remember dreaming of you at all, but I played with you before I drifted off for the next five hours. When I finally woke up, I told your daddy that we should get out and go grab a late breakfast somewhere. We headed off to some restaurant a lady on the airplane had told him about. I don’t even know where it was, except we had to leave the Island of Coronado to get there. It was a really cute restaurant, and I sat on the patio with your daddy and brothers. We all ordered breakfast and I was just sitting there, looking at home handsome your brother, Liam is. I stared at him for a few minutes and then the crying started. I couldn’t stop the tears from pouring, your daddy just looked at me and brushed them away, and I put back on my sunglasses. There was a table of people right next to us. I nicknamed them “The pretty people,” in my head. They must have been in their 30’s and they were celebrating a birthday. Their table was full of so much happiness, laugher and love. I used to know what it felt like to sit at a table like that. Not to have a care in the world and everything was so carefree and pure. Now, the table I sit at is full of tears and sadness with a reality that I never wanted, but will always be mine. I will wear these scars for the rest of my life and they will never fade, because you are missing. Because you didn’t get to be a breakfast with us today, nor will you ever be again. I pictured you with us though. You would have loved the gooey cinnamon roll Quinn and Liam had. You would have gotten the frosting everywhere and probably wiped it all over Quinn. You would have taken the pure sugar chunks they had sitting out to sweeten the tea with and chucked them across the table at one of your brothers. I would have done my best “Ronan Sean Thompson! Use your manners!” to you as I tried to scold you but I would have ended up in a fit of giggles. Your naughty ways were always my weakness. Your carefree spirit, freed my soul.

I was writing last night to Mr. Sparkly Eyes and my exact words to him were, “Ronan completed everything in my life. Everything. After I had him, I finally for the first time in my life felt complete, whole, and perfect. He tied our whole family together in a big, pretty bow.  Now what? What do you do after that is gone? Survive I guess. Float, so you don’t sink. Swim, so you don’t drown. Go on. Move forward. Continue to fight. Fight to stay alive, to get out of bed, for that glimmer of happiness that I sometimes get to feel during the day.” Those were my words last night and you know it’s my truth. I’m fighting baby. I’m fighting every second of the day to hold on to you, to me, to your brothers, to your daddy. I won’t let go no matter how much I want to give up. I won’t let you down.

After our breakfast of tears, we explored the streets a little. Walking down the sidewalk, did you see the 4 of us? I know you did. We were all walking down the sidewalk, holding hands. All of us, linked together. I turned around to find you, expecting you to be running behind us. When I realized you weren’t there, I had to let go of your daddy’s hand. I couldn’t  hold on without you. The tears burned my eyes, but the pain in my heart was worse. Everyday seems to be getting harder and harder. I did forget to tell you about something so silly that happened last night though. Something that made me happy. After the crazy ocean swimming night I had with your brothers, we all went to the hot tub. When we returned back to the condo, Quinn realized he had forgotten his flip-flops down by the pool. I took his hand and told him we could walk back to the pool to get them. We got to the pool, but it was after hours so my card that lets us in, wouldn’t work. Quinn was devastated but I tried to tell him we would come down in the morning to get them and it was no big deal. His eyes got all teary as you know what a little worry wart he is and he was upset that they would be gone in the morning. I told him there was nothing I could do, but the look on his face  told me I had no choice to somehow get into the pool and rescue his darn flip-flops. So you know what I did?? I looked around to see if there was any way I could scale the concrete wall that surrounds the pool. I told Quinn to hold my things and I somehow managed to hoist myself up and over the wall, and I landed on the other side where his flip-flops were waiting for me. You should have seen the smile on your brothers face. I smiled at that and the thought of you and how I knew you were watching me, “break the rules,” as we used to love to do. Quinn told me that I was the best mom ever and now he understands why I like to run all the time and why it’s important to me. He said it’s so I can do things like that and he bets no other mom would have done something “so cool.” It made me giggle. He’s been talking about it non-stop to me since it happened last night. Sweet boy. The smile on his face was priceless. It made my night.

I ended tonight with my late night run and a movie night on the couch with your daddy and brothers. I’m going to say goodnight now baby. My most favorite movie in the world is on, “Lost in Translation.” I’m going to try to unwind while watching it in hopes for some sleep. It’s a movie I will never get tired of, no matter how many times I see it. It’s a good way to end just another painfully hard day. I miss you so much. I hope to see you soon. Sweet dreams, my blue eyed boy. I love you.

xoxo

 

Mama and Ro baby take NYC <3

Ronan and I arrived to NYC yesterday morning 5:30 East Coast Time. The flight was great, fast and Ro slept the entire time. We headed to our hotel, checked in, and we were in our room by 6:30 a.m. Ronan was chipper and ready to play, but I told him how it was really only 4:30 in the morning at home so we needed to rest before our big day. He didn’t put up much of a fight, crawled in bed with me and we slept a couple of hours. You’d think I’d be a zombie tonight but I’m not. Must be that NYC energy. We woke up, got ready and headed over to Sloan Kettering. As soon as we arrived to the 9th floor it was party central. They were having a parade for Marti Gras. Ronan loved watching all the action. We spent the next 4 hours having labs drawn, getting his MIBG scan injection, and had an Echo test done on his heart. It was a very long day but we killed a lot of time by playing in the playroom and doing arts and crafts. As much as this sucks, today I found myself having the time of my life with Ronan. I feel so lucky to be able to spend so much time with him. I cherish every second I have with him so much. As the day was ending, we went to finish our last thing which was the Echo test. An adorable girl named Penny took us back into her room and I laid down on the bed with Ronan so he could rest on top of me while she did her thing. The test is really simple and was done in about 20 minutes. Ronan ended up falling asleep on me so I sat and watched Ronan’s little heart on the screen as it pitter pattered away. Penny kept telling me how beautiful and healthy it looked. As soon as Ronan’s little heart started beating away and we could hear it, I completely lost it. I told Penny I was sorry that I couldn’t stop crying and she smiled sweetly and told me that it was totally o.k. I explained to her that hearing his heart beat like that reminded me of when I first heard his heartbeat on an ultrasound. I will never forget what it felt like to hear his heart for the first time and now this. Who would have thought in a million years that I would be listening to Ronan’s heart on a monitor again due to cancer. So. Freaking. Unfair.

After the Echo test we scooted out of Sloan quickly to go back to our hotel and meet one of Auntie Karen’s best friends for dinner. We met Krista at Serendipity and it was such a treat. I’ve heard about her forever and it was so lovely to finally meet her. We had a nice dinner and Ronan and I shared the to die for Frozen Hot Chocolate. He was beyond tired from his day and ended up falling asleep in my lap. Krista and I had a chance to finally get to know each other and I can see why Auntie Karen loves her so much. She was a delight:) Just as we were leaving, Ronan woke up not a happy camper. We were going to take him to Dylan’s Candy Shop, but I decided that we’d better just head back to our room. Krista got us a cab and sent us on our way. We came back here and  talked to Woody, Liam, and Quinn via Face Time on our Macs. Ronan got a big kick out of that. The rest of the night was spent just hanging out and playing. Ronan finally fell asleep a while ago and he has no idea what we have in store for tomorrow. I have yet to tell him that he has to get his MIBG scan. UGH. He is going to be beyond mad that, 1) he has to get his sleepy medicine and 2) that Dr. Maze is not the one giving it to him. I did not want to tell him any of this today because I know he will sit and obsess over it. I’m not telling him anything until right before we go back so they can put him under. I am nervous for this MIBG scan even though we just had one not too long ago. Ronan has been complaining of his right arm hurting for a few days now. I had one of the doctors look at it today and we cannot see any bruising or swelling. So, of course my mind goes to the worst place possible which is something I’m not going to even say out loud. We will know by tomorrow if anything new is going on. I am sick to my stomach tonight. Ronan has also been complaining of his right leg hurting and I have pretty much been carrying him everywhere. I noticed him limping tonight. This has been going on for a while now and has been something we have just been watching closely. As I said before, if anything is going on, we will know by tomorrow. Pray that it is not. I’m thinking positive and just keep telling myself it is his bone marrow healing or growing pains. Please let it be one of those things.

As of now, our plan is to stay here until Thursday or Friday. We will then return around March 20th and that will begin our 5 week long stay. Woody will be coming out with me during that time for a while, thank god. It is really hard to be here without him. He is such a big help to me when he is here. We both really miss him this trip. It’s hard to be a single mom, in a different city, when your kid has cancer. It’s hard but I am strong and know I can do it. New York is going to be the best adventure yet.

That’s all for tonight. Sleepiness is starting to kick in. Let’s just hope it lasts. I am tired of waking up every night at 3 a.m. and not being able to go back to sleep. I call it the witching hour around here. G’night, sweet dreams, and lots of prayers for our Ro baby tomorrow. Love to you all!

xoxo

An old soul

Ronan had his clinic visit this morning. His levels have dropped just as we were expecting. We are so used to this chemo thing now that we know where his counts will be. What I didn’t expect wash his platelet counts to be so low. They were 10,000 today. WHAT?!?! 10,000 and not a bloody nose in sight? How is that possible? Since we started this chemo journey, anytime Ronan’s platelets drop lower than 20,000-30,000 we are guaranteed that he has the dreaded bloody noses that we cannot control. I told “A” today that maybe it’s due to having the tumor out of Ro. She smiled and I know she doesn’t think there is any correlation between the two, but I am going with what I have been saying all along…. He really is a brand new boy. He was so sweet as we were waiting at the clinic today. He sat and talked to me about all of the nurses who take care of him. As “A” walked by, he goes, “She’s so nice, Mom.” The he told me how much he loved Sharon and Kristin. He is so full of love today and is just so grateful, even though he is feeling so crummy. His ANC is at 60… which means his immune system is almost wiped out. I’m expecting it to hit 0 tomorrow. We will have to keep a close eye on him…knock on wood no fevers or bloody noses. It would be so nice to stay out of the hospital until Transplant time.

I spoke with Erin from Transplant today; she is basically Dr. Adams go to girl as far as scheduling and preparing us goes. She told me to expect to start Transplant on February 15 or 16th. Assuming all of Ronan’s tests come back with the results we are wanting to see. She didn’t see any reason why they wouldn’t, but he has to have everything from his heart, liver, and kidney checked to make sure they are functioning properly before we can get the green light. He has those tests scheduled for February 9th. So far, every time he has had his organs checked, everything has looked great. It is amazing how much the human body can take. After we get the green light for transplant, we will then be randomized to see if Ronan will have two transplants or one. You know we are hoping for two…. even though I am scared shitless at what this is going to do to my little guys body. Woody keeps saying we’ve got to throw the kitchen sink at Ronan’s cancer… and two transplants is definitely throwing the kitchen sink at it. If Ronan’s cancer comes back, it will be because we didn’t kill all of the cancer cells the first time around. Two transplants we feel, will increase the chances of killing all of his cancer.

I am trying to mentally prepare for Transplant/Isolation. I am wracking my brain for everything that I can possibly think of to keep myself and Ronan happy during his stay. I’ve been trying to think of it more like… If I were stranded on a desert island rather than… if I were trapped in a solitary confinement… what would I need?? Something tells me George Clooney may not be realistic. So far, I’ve come up with easy things such as: my computer(duh) my camera, movies, books, my coconut water (have I mentioned that I am OBSESSED with the stuff??) my yoga mat, Ronan’s favorite toys, Art supplies, his favorite bedding, his Wii and PS3. We will have to set up Skype to keep in touch with Liam and Quinn. I am trying my hardest to turn this into something really positive. Not many people get the opportunity in life to just simply “be.” I am hoping something really good will come out of this and it will make Ronan and myself even stronger. It will be a time for great reflection and learning. Tricia and I were laughing the other night because I told her I was going to study Buddhism while in Isolation. She told me she was going to make me a little sign to wear around my neck that says, “Cannot speak,” due to respecting the silence that comes with this religion. The image in my head totally made me laugh. Don’t think I’ll take it that far, but I love her for making me laugh.

I talked to my NYC Miss Macy today. That crazy pants. She texted me to see if the boys’ would like a King Cake from Nola. She is going there on a business trip soon and wanted to ship the boys one. I had no idea what a King Cake even was so I listened as she Googled it and explained it to me. I also told her that I needed her to come stay with me in Isolation. I was half joking and told her I needed her purely for selfish reasons. She told me to say the word and she would be on a flight if that is what I needed to keep me sane. I told her that we would save her visit for when we are finished with this Stem Cell Transplant and that way, we can all enjoy Miss Macy to the fullest. We are going to have such a reason to celebrate! I know Ronan is going to soar through this transplant with flying colors. He is so tough and has done so well with everything else, how could he not.

For now, I am going to soak up being at home with the boy and Woody. These past couple of days have been so sweet. I am thankful every second of the day, for all the blessings we have in our life. Ronan being the biggest one of them all. One of the night nurses that takes care of Ro whenever we are admitted to PCH says the same thing to me every time she comes in to check his vitals. She always tells me that she can tell Ronan is an old soul. This always makes me smile because I have known this since the day he was born. He has always been different; almost like he has been here many times before. He just has that look in his eyes that tells me not to be scared, not to worry, because everything is going to be alright. Looking into his eyes, I know this. This cannot turn out any other way; he has way too many hearts to break and way too much trouble to cause.