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

  

Ro baby takes Philidelphia and New York City

I am so happy to tell you tonight that I haven’t updated things in a few days due to a very busy, but fun weekend. It’s the first time that I can remember since before Ronan was diagnosed with cancer, that things around here felt very normal. We spent the weekend hanging out at home, enjoying family time. Woody and I snuck out for a date on Saturday night while Auntie Karen and Olivia watched the boys.’ We had an amazing dinner at Tarbell’s even though I ended up crying a bit in the middle of a conversation between Woody and myself. I tried my hardest to just be a normal couple on a Saturday night…. but the harder I try, the harder things become. We will never be that normal couple again. It’s just not in the cards for us anymore. Everything has changed; nothing is the same.  Not even a Saturday night date will be like the old days. Maybe it is for the better…. because I am so much more aware of the reality of the world around me. But it still stings. I now sit in restaurants and watch the people around me and wonder if they have the sadness in their lives that I do, but in a different form. Or maybe they are lucky enough to be blissfully happy. I know that the world is full of sadness, but as I sat at dinner with Woody, the feeling of complete aloneness washed over me. I sat and thought things like, I bet their baby doesn’t have cancer, or I bet their Grandbabies are totally healthy….Then the guilt washes over me for having these thoughts…. I wouldn’t wish this on my worst enemy. I was once blissfully happy but also blinded by ignorance. Now, I truly know the meaning of ignorance is bliss. What a bullshit way to find that out.

On Sunday I met Fernanda at Hava Java for some coffee. I love that when I was on the phone with Tricia right before Fernanda picked me up and I told Trish how I was going for coffee, Trish goes, “What part of the world is Fernanda saving today?” So adorable. I told her she was saving me:) We sat and had our coffee and she helped me write down all of my questions for the doctors at Chop. We talked about my upcoming week, but the thing I enjoyed most was listening to my new friend talk about the things in her world. Her kids, her funny family stories, the things she’s done in her life. One of the biggest gifts of all of this has been getting to know this beautiful woman. Through this crises, comes the gift of her. I will be thankful for the rest of my life for all the beauty that has shown it’s colors during the darkest time. Fernanda is one of the most colorful things that I have ever seen in my life. I so need color now. This black and white stuff is getting a bit dull and scary. Life is not black and white, Ronan is not black and white, and I wish the doctors in this world would start thinking this way too. I’m about to take all the crayons out of Ronan’s Crayola box and scribble up and down all of their stupid papers and statistics. They do not know my Ro baby.

Woody and I also spent the weekend figuring out our plan for the week. Since Ronan’s ANC counts don’t seem to be dropping and he looks great, we decided to take him out to Philadelphia to Chop. Ro and I are flying out tomorrow morning on a Corporate Angels flight. Woody has a court appearance he cannot miss, so he will be flying out tomorrow late afternoon. We are meeting Dr. Mosse on Wednesday to go over our list of questions with her and to just get another opinion and feel for the place. We decided since we were going to be in Philly, that on Wednesday we would take the train to New York and meet with Dr. Kusher at Sloan Kettering on Thursday. We will fly home Thursday night. It’s going to be a whirlwind of a trip, but one that we both feel is necessary. We have to be prepared as much as possible for what we have ahead of us. Arming ourselves with as much knowledge as possible will only help us decide on what path to take for Ronan. I think we both know in our hearts; but we are keeping our minds as open as possible.

Today, Ronan and I headed to the clinic to have his levels checked. Dr. Eshun thought he looked great and saw no need to transfuse him. Ronan was so excited about not having to get blood, he practically skipped out of the clinic office and to our car. We went home and played out in our backyard and got everything ready for our trip. Liam and Quinn came home soon after and their cousins, Luke and Lily came over to play for a couple of hours. It’s always a treat to have them spend time with us. Ronan especially loves it. It was a good way to get him ready for his upcoming travels. He is a little sad about having to leave Liam and Quinn behind once again. He’s not the only one. I wish they could come on these trips with us but I understand how important stability is in their lives right now. I also understand how important it is to be able to just focus on Ronan, the doctors and get the job done. I cannot wait to get back home to them already though. So glad we will have the weekend together. Ronan is set to start his 8th cycle of Chemo March 14th. Hopefully we will stay hospital free until then. It would be so nice to continue to be at home. There is no place he would rather be.

Woody said to me tonight, “Aren’t these supposed to be the happiest times of our lives?” How do you even respond to that?? I just nodded my head and gave him the best smile I could, which wasn’t much. Fucking cancer. Thanks for robbing all of us of this precious time in life. I HATE YOU.

Hope you all have been well. Wishing you a night full of sweet dreams. Happy Birthday to my Little M today too. I hope you go my message and are having a wonderful time in NYC. I miss you so much and can’t wait to celebrate you when we both get back from our trip and things settle down as much as possible. I love you, Marisa <3

Safe travels for us tomorrow! It’s going to be a very busy next few days!! G’nite friends!!

xoxo


A warning sign
I missed the good part then I realized
I started looking and the bubble burst
I started looking for excuses

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you, so

A warning sign
You came back to haunt me and I realized
That you were an island and I passed you by
And you were an island to discover

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
That I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you so
And I’m tired I should not have let you go

Ooooooooooooooooo

So I crawl back into your open arms
Yes I crawl back into your open arms
And I crawl back into your open arms
Yes I crawl back into your open arms