Because Kids get Cancer, too.

 

Ronan. September 1st. Childhood Cancer Awareness Month. How many people out there, are aware? Not enough. Or if they are aware, they are choosing to ignore it. Assholes. If everyone was AWARE and not IGNORING it, you may still be here. I truly believe that. Was I that unaware Asshole? Totally. Do I wish I still were? If it meant having you here? Absolutely. I would give anything to have you back. You know this. I would sell my soul do the Devil in a heartbeat. It would be so much better than being trapped here, without you. But someone else had other ideas. I don’t like it, but I have to start to accept it; a bit more and more, everyday.

Otherwise, I am going to turn into that bitter mama who is mad at the world. Who has EVERY right to be mad at the world and to turn her back on everything. I don’t want to end up this way, but sometimes it seems like it would be so much easier than to continue on this fight. I know I don’t have a choice, Ro. I know I have to make a difference even when people tell me that I DON’T have a responsibility to anyone but myself, your brothers and your daddy. I know this is not true. I know I still have a responsibility to you. I have to make a difference because this is what you would have wanted. I know you want me to find a bigger purpose in this world than just worrying about if my ass looks big in my LuLu Lemon gym shorts and what to cook for fucking dinner. I know you want me to leave your mark, everywhere. I have no choice but to honor you in the biggest way I can. That means that I will fight this fight until people start to listen. Until huge companies, start to honor Childhood Cancer, the way they do Breast Cancer. Until people stop turning their cheeks because it can’t happen to them. Fuck you. It can. I hope it NEVER does. But I hope if it does, you never have to walk in my shoes because I am going blaze the trails so that Childhood Cancer does start to get the attention and funding that it deserves. So that one day, there WILL be a CURE. So beautiful families, don’t have to watch helplessly as their child dies even after they have done all they can do. The best they could have done. The best will never be enough, because you still died, Ro. I will always feel the guilt of this inside of me. I will never understand why my love was not enough to save you. It should have been. But it wasn’t because Childhood Cancer is that ugly. That real. That scary, that it can change everything in the blink of an eye. But don’t worry. If you choose to ignore it, it cannot happen to you. Bullshit. I am like a flashing, neon sign now people. If you cannot stand to hear this story, because it is too sad, than stop reading, because you are NOT worthy of knowing this beautiful love story. You are not worthy of watching the beauty that is going to come out of losing the most beautiful boy in the world. If you are strong enough to be here, I thank you from the bottom of my heart. I love each and every one of you. I need your help, more than ever. You are all going to help in this fight for Ronan and thousands of other children, who deserve a voice. I feel so blessed that Ronan has touched your lives, even if many of you did not know him. If you are not going to be the loudest cheerleader for me, Ro, or thousands of other precious kids who are going through this…. just knowing that you feel like I have made you love your babies, your family, friends, appreciate the little things more…. still means so much to me. Just knowing that it is because of my Ro, that you feel this way… makes me feel like I am capable of making this world a better place.

I know I have a big job ahead of me, but I feel as if my head is becoming a little clearer, more and more everyday. I feel like the fog is being lifted. I’ve stopped all of my medications. All of them. Even the sleepy meds. Cold Turkey, YO! Just because everyone told me I couldn’t do it, and I shouldn’t do it. Well, I did. I am finally starting to feel free again. I am taking Melatonin to help me sleep. I should have listened to my Mr. Sparkly Eyes at the beginning of all of this as he was always suggesting it. Of course, I had to learn the hard way. Thank GOD for Stacy and for bringing that bottle over to my house the other night. Don’t get me wrong…. my sleep is still not wonderful. I still toss and turn. I still wake up, screaming and crying for you. I am still having very vivid, and mostly awful dreams. But it’s not any worse than it was while I was on my prescription sleeping pills. And at least this Melatonin, is a natural substance. I am a fighter and I will fight though this. I refuse to become one of those moms who ends up going through something awful and becoming addicted to prescription meds. No judgement at all. I just know that is not for me. It is not the way I want to live this life. I want to feel, as painful as it may be. I don’t want to be numb.

I’m in the best place I can be, as of now. It’s not good and I know this. I know I am being hard on myself which is why I’ve named this phase of grief, the Phase of Torture. I am doing a lot of things that are not good for me. Not eating, pushing myself on my Inferno Hikes, throwing up a lot if I do eat, second guessing everything we did for you, mentally beating myself up…… But I am here, I am getting up out of bed, I am being a good mom to your brothers, I am being honest, I am going to a lot of therapy, I am feeling. I AM FEELING. I have not felt for a very long time. I was numb and in shock. I still have those feelings some days, but they are less and less.

Ro. I fell asleep about an hour or so ago, but now I am up again due to my dreams. I hate them. They never involve you, and they are always so scary, sad, and mean. Kind of like my everyday life without you now. Where are you and who is taking care of you? Who is brushing your teeth, rubbing your little back, and singing Twinkle Twinkle Little Star to you? It’s not me. I hate this.

I’ve written to you for days now. Not being able to finish. I have too much to say, too little to say, too many scary things going through my mind, that I don’t want to say. I’m feeling tired, sad, and angry. I’m trying to do my best, to stay positive. Walking through this life without you by my side is utter torture. You spent 4 years attached to my hip. Trying to go on with you gone now, hurts so much. And some days, I just don’t want to do it anymore. I just want to be with you again. I’ll never understand, why it had to be you…. why did you have to be the one to be taken away. Who would be so cruel to do such a thing? I don’t want this life lesson. I don’t want to be grateful for all the little things because I don’t have you anymore. I just want you back. I think I may have to throw up now. We are all here, tucked away in our quiet house for the night. You are not with us anymore and everything about our lives is so different, in the most awful way. I wish I really had an arm missing, or half of my face…. anything but you.

This weekend has been a blur. Lots of family time. We had Kenny, Stacy and the kids over last night. Always good to be with them as they are like family and they just get it. They know how much we need them and they have been such amazing friends to us. I was in a foul mood, talking trash to your Daddy….. being a tough ass. I had a good talk with Stacy, who tried to reason with me a bit. There was no reasoning last night and I usually listen to her. I told her how I didn’t understand how I was just expected to go on and just go about normal things now. Like how could I possibly go on a trip with your Daddy in a few weeks? A trip. Are you fucking kidding me? This is a trip we’ve taken together for years now… and I am supposed to go in a few weeks. Is everyone on crack? This is NOT a normal year. Normal things do not exist yet. Will they ever again? No. But I need some time. I cannot just be thrown back into this life, and be expected to do things that I have done before, in the past, when you were among the living. You just left this earth. I am still here, and trying to figure out how to navigate my way through the fucking grocery store. How am I supposed to hop on a flight to Vegas in a few weeks??? It seems like a sick joke to me. I tried to go to the race tracks in Del Mar over the summer and almost had to be hauled off to the loony bin because I could not handle all the obnoxious people, smoking everywhere, in their stupid hats and clothes. And going to Vegas, during a normal year has never really been my cup of tea. I can stand that place for about 24 hours, on a good day. Can you imagine how I would freak out, going there this year…. it gives me anxiety just thinking about it. If I go, I’m going to wear a shirt that says something like, “My son just died, but let’s gamble anyway.” WTF people?!?! I just want to be left alone. I just want my time to grieve for you. I don’t want to go to Vegas, I don’t want Thanksgiving, I don’t want the weekends anymore, I don’t want to pretend like this is getting easier….. because it is not. Why is everyone acting like just because it’s been almost 4 months, that I need to be moving on, and starting to feel better. I WILL NEVER FEEL BETTER. That I can guarantee you. Do you know what a good day for me is like now? Let me just tell you. A good day now, is a day when my throat does not feel like it is going to close up and I am going to just suffocate to death. A good day is when I can actually swallow, without it hurting. A good day is when I can actually eat a meal, and keep it down. A good day is when I can put on a happy face, and check off some of the things on my shit list. I’ve come up with a new saying that I have adapted. Fake it till you make it. Yup. I’m faking it everyday that I am up out of bed and being productive because I don’t want to be at all. I don’t want any of this life without you.

Did you know Ro, that my mind is so distraught from losing you, that I cannot remember any happy memories of you? My mind cannot even go there. The PTSD is real and it is part of what I am going through now. I’ve talked to all of my therapists about it. They all agree.

 

PTSD can cause many symptoms. These symptoms can be grouped into three categories:

1. Re-experiencing symptoms:

  • Flashbacks—reliving the trauma over and over, including physical symptoms like a racing heart or sweating
  • Bad dreams
  • Frightening thoughts.

Re-experiencing symptoms may cause problems in a person’s everyday routine. They can start from the person’s own thoughts and feelings. Words, objects, or situations that are reminders of the event can also trigger re-experiencing.

2. Avoidance symptoms:

  • Staying away from places, events, or objects that are reminders of the experience
  • Feeling emotionally numb
  • Feeling strong guilt, depression, or worry
  • Losing interest in activities that were enjoyable in the past

Things that remind a person of the traumatic event can trigger avoidance symptoms. These symptoms may cause a person to change his or her personal routine. For example, after a bad car accident, a person who usually drives may avoid driving or riding in a car.

3. Hyperarousal symptoms:

  • Being easily startled
  • Feeling tense or “on edge”
  • Having difficulty sleeping, and/or having angry outbursts.

Hyperarousal symptoms are usually constant, instead of being triggered by things that remind one of the traumatic event. They can make the person feel stressed and angry. These symptoms may make it hard to do daily tasks, such as sleeping, eating, or concentrating.

It’s natural to have some of these symptoms after a dangerous event. Sometimes people have very serious symptoms that go away after a few weeks. This is called acute stress disorder, or ASD. When the symptoms last more than a few weeks and become an ongoing problem, they might be PTSD. Some people with PTSD don’t show any symptoms for weeks or months.

I relive what I went through with you, over and over through the day. I don’t have any other memories of you as of now, besides you being sick, you dying, and the love we had for each other. I am trying to work past this but as of now, I’m stuck. Maybe that’s why I cannot dream about you. I’m stuck in such an awful place in my mind, trapped in between awful memories, and my reality, which is Hell on Earth.

I went Inferno Hiking at 1:00 today. Nobody else was on the mountain. It was nice but I hardly remember any of it. I have decided that the reason I love it so much is because it is so painful. So hot that my socks burn the bottom of my heels. It is dangerous and it is the only time during my days that I have to let go of the memory of you not being here. When I am on my run, down the mountain, I have to stay so sharp, so focused on what I am doing…. because one wrong step and it is goodbye Maya, hello broken arm and face plant into the sharp, burning rocks. Bring it on.

I know you know about my intuition that I have had my entire life, Ro. But here is just another example. As I was driving home from The Inferno today, I started thinking about the neighbors that we brought flowers to, on your Random Day of Kindness. I was getting close to their house and I was beating myself up, because when we met them, they told us about their baby girl that they had lost. Their sweet baby girl, whom never even made it out of the hospital. I knew that she passed away sometime in August and I started getting really mad at myself because I could not remember the date, and I had really wanted to put a card in their mailbox, just to let them know I was thinking about them. It’s September now, so I knew that the time had passed and I was so disappointed at myself for forgetting. As soon as I got home, I parked the car and went to get the mail. I pulled it out, I saw a letter addressed to me, from our neighbors. That is weird, I thought to myself, as I had just spent the past 4 minutes, thinking obsessively about them and their baby girl. I ripped open the letter and it was from the wife. She had taken the time to write me a beautiful letter, more about who they are, who their kids are, and how the daughter that they lost, would have been 22 this year. I started to sob. It was such an honest, beautiful, and kind letter. She wrote to me about how she had read my blog before meeting me, and that I had seemed so strong from my words. But then when she saw me, face to face, that I seemed so fragile. She gets it. She knows why I look that way. It’s because she is a mother, who has lost her little girl. It’s almost like a secret handshake that we have. She can easily see the pain in my eyes, when others cannot. Getting that letter today, reminded me that for as fragile as I am…. I still cannot give up on this life. That I cannot give up on myself. I am on to something with the way I have some of these things in life figured out. I need to listen to my instincts a little more and trust in myself that the path that I am on, is going to lead me to where I was meant to go. As much as I want to fight this stupid life now… I have too much to go on for. You are still my number one reason for living. You are keeping me alive, Ronan. You will take me when you are ready and I just need to trust and believe in that. It is the only thing I trust and believe in anymore.

I’m going to go baby. This has turned into a novel. I hope it even makes sense. I love you so much. To the moon and back, forever and ever. Sweet dreams little one. I hope you are safe.

xoxo

This made me laugh. I will take a laugh wherever I can get it:)

 

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