Tag: Papa Jim

Nature is my church and you are my teacher


Ronan. Hi babydoll. We are still at your Nana’s house. It feels like we’ve been here, forever. I don’t miss home. I do miss your daddy. He can’t come out this trip, which is killing us both, but we are both doing our best. All that time he took off during May/June has left him with a ton to catch up on. I hate knowing that he is at home at night, in our empty house with just your urn, to keep him company. It is so wrong, on so many levels. I’m doing my best to play the role of both parents here. Your Papa Jim and Nana have been a big help. Your brothers have been really good. We have been doing so much…kind of going non-stop. Last night, your Papa Jim wanted to take your brothers out on his boat, night fishing. “What do you mean, they’ll be gone until midnight? No way! I already have one dead child, I don’t need anymore!” I said to your Nana with a look of terror on my face. “They aren’t going.” But then your brothers, begged. And begged some more. Normally, I would not give into the begging. I thought it through. Night fishing with Papa Jim. Who knows when this will happen again. New memories for them. An adventure. Something they will treasure for the rest of their lives. “You can go if you both promise me this. No fighting on the boat. I want text message updates every hour. Under NO circumstance does your life jacket come off. EVER. You follow the rules and listen to everything your Papa says. Pinky promise me.” We hooked pinkies. “Thanks, mom!” They were so excited. I got text messages, every hour on the hour. The cutest little text messages. Your brothers are so sweet, it kills me that they have to go through any of this. I am trying my best for them, Ronan. And for you. I think I am doing an alright job. I feel like I am doing much better for them, then I was doing last year at this time. Everyday is still as struggle, but it is easier for me to be more present and engaged with them, then it used to be. I decided awhile ago that for as much pain as I am in, I cannot ruin their lives, even more by bailing out. They don’t deserve that. They don’t deserve any of this, but what happened to you was not in my control. What happens to them, due the the way I react to the loss of you, is in my control due to the decisions I make. I am trying to be a good mom to them still, Ronan. I am trying so very hard. I think somedays, I get it right. I hope they will forgive me for the days that I just can’t seem to pull my shit together. They don’t happen very often. But I hate that they have had to see them at all. 

Your brothers and Papa got home around midnight. They caught a huge Salmon. I am so glad they did. That made their adventure, even better. We all 3 slept in again and I woke up to hearing the giggles and laughs coming from outside. I went out to see what was going on. Ahhhhh… the cleaning of the salmon had begun. Liam was gagging and would not get near it. Quinn was gloved like a freaking serial killer and was cutting away with a huge knife, helping your Papa, clean the thing. I got there just in time to snap away so great pictures. It was a beauty of a fish. Quinn then proceeded to take the head of the fish and inform me that he was a doctor, performing surgery. I watched him as he cut away and dissected the entire head of the fish down to the eyeballs. This might make some mom’s squeamish. Not your mama. I was right in there with him, helping him with all the guts and blood. Sometimes he is so much like me, that it is eerie. I’ve never been one to be squeamish over guts and blood. But it does take me back to you, of course. All of the bloody noses that we had to deal with. I will never forget those, Ronan. They haunt me at all times of the day. I’m so sorry baby. For all you went through and even after everything, nothing could save you. How could that even be? I’ll never ever understand, Ronan. I would have done anything to save you. I would have taken you anywhere. I look back and regret so much. Even though your daddy still swears we did all we could do. That will never be good enough for me.

After the cleaning/operation on Mr. Fish, we went to Oregon to hike Multnomah Falls. These two states, often leave me breathless Ronan. There is never ending beauty, everywhere. I miss it here, so very much. I have for a really long time. We had the best day with your Papa. It was day full of simple surprises. The deer that we saw on our hike, that was just sitting there, eating the leaves not even 3 feet from us. I saw it and immediately thought of you. “Oh, a gift from Ronan.” I think every beautiful thing I see, feel, or hear in my life is a gift from you. It was so perfect, calm and sweet. The deer wasn’t scared of us, it just nibbled on it’s food, while staring into my eyes. It jumped away after somebody came by with a dog. I could have sat and started at it, forever. It was almost the most perfect day. But you should have been there, too. I kept looking for you everywhere and imagining what you would have been doing. I do that with everything we do, without you. I know you would have been right in there with Quinny, dissecting the fish. I know you would have been right there with Liam, throwing rocks into the waterfall. I know you would have made me carry you, halfway up our hike. I know you would have been eating that ice cream cone, with your Papa and giggling with him in the car. I know these things, even without you here to do them. I live my life imagining you this way every second of every day. Nothing I do in my life, is without you.

I’m going to end this here tonight now, Ronan. I am a blubbering mess and I am trying not to cry too much because I don’t want to wake up your brothers and make them sad. They are both sleeping right next to me. We miss you. We wish you were here. I love you, little man. I miss you so very much. I hope you are safe. Sweet dreams, baby doll.

xoxo

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Cancer is a whore. My friend, Robyn, told me so.

 

Ronan. I am tired. Living this life without you is exhausting. I hardly remember the days when I used to think you wore me out due to your never-ending energy. I used to think taking care of you was a lot of work. Well, let me assure you, taking care of a dead child is 100 times more exhausting. It is 100 times more exhausting than the temper tantrums, throwing up, crying, teaching, arguing, potty training, bathing, feeding, reading, singing, playing, snotty noses, laughing, loving, and all the other beautiful things that come with raising a child. Taking care of a dead child is 24 hours of pure and non-stop torture that on days like today, leaves me feeling more exhausted than running a fucking marathon.

We are still in Washington. I do well here. It’s no secret. My heart is not in AZ. I won’t live there forever. There will come a day when I will leave. Your daddy knows this. He is on board with this. He will go wherever we decide to go, as a family. I’ve already thrown out a few places as options. It’s a decision we have both made. My heart does not belong in that state. It never has. I have only a couple of things keeping me there, as of now. But those couple of things mean too much to me to leave. As long as they are there, I will stay there. I’m not saying what or who they are, but I know you know. Because you’ve always known. Right now, we are there because it is where we need to be. Because right now it is what is best for Liam and Quinn. I can put myself aside for the sake of the two of them for the time being. I can sacrifice myself for those boys’ no questions asked. But Phoenix leaves me feeling restless and chaotic. The only peace I get is when I am hiking up a mountain in 110 degree weather. That tells me right there, that there is a problem. I know what my main problem is… that being not having you anymore. But Phoenix only seems to add fuel to the fire. I can make due for now. I can be thankful that we have your Nana’s house to come to so that I can have a little peace and quiet. I can be thankful for things like rainy summer days, scratches from sticker bushes, muddy feet from exploring the never-ending rivers/streams/ponds that surround us… I can be thankful that your brothers have this place to come to, to experience childhood the way it should be. Simple, calm, and beautiful. You don’t get much more beautiful than this state. I have always thought so. It makes the 8 months of rain, totally worth it. But I am also a big fan of the rain so I may be biased. I am an even bigger fan now because I feel like my body and soul are in a constant state of rain due to all of my tears. It’s nice to not wake up to the blinding freaking sun every single day. The mornings here are damp and foggy. The air is clean. The sun comes out just in time to kiss my lips for a few hours and then it goes back to sleep. My heaven.

I’ve been doing a lot of playing with your brothers. So much playing that we are all 3 falling into bed and we hardly have the energy to say goodnight to one another and you, before it’s lights out. That never happens in AZ. It’s been a constant stream of baseball, board games, swinging, basketball, and Papa time. That Papa time is my favorite time of all. Your papa and I took Liam and Quinn to Mount St. Helen’s yesterday. The world that I watch Liam and Quinn slip into around him is magical. It’s one of my favorite places to be. The laugher and adventures are endless. He is the youngest 72-year-old that I have ever known. It’s like I’m watching 3 kids play whenever I am with him. He was one of your best friends and vise versa. He misses you so much. Yesterday, when we stopped to explore a little bit, we were throwing some rocks into the water. There were a ton of sticks and wood pieces floating around. The kind that you used to make your papa load the back of his truck up with. “More papa, more!” you used to yell to him. We would always bring home 10-20 pieces of wood and sticks for you. Your papa found a really good one yesterday and said, “I’d better get this one, for Ronie.” “Ronie, Ronie, Macaroni!” he would often sing to you. I just looked at him and said thank you. What I really meant was thank you for being the best step-dad ever. For being the best papa ever. For being the best friend to my 3 boys. For never forgetting you, Ronie, and for never being afraid to talk about you, sometimes like you are still here. I know how hard this has been for him. He loves you so much. He would have traded places with you, in a heartbeat. I know he is constantly asking himself why you and not him. We all are baby boy; we all are.

I think about you all the time. I told your Sparkly that I swore I think about you, 24 hours a day. He said he knew. I know he knows this because he thinks of you everyday too. He misses you. I have been thinking about a lot of things lately, trying to give myself some peace of mind which won’t ever happen, but I need just a sliver of it, to get me through this. For me to say that I 100% know where you are, who you are with, and what you are doing is something I am not willing to eat up on a plate of bullshit. Hello! Am I the only crazy one out there, who will admit this?!! NOBODY REALLY KNOWS where you are, Ro baby. WTF! I can fully respect what people believe… but I am so tired of hearing, “Oh, hello… I am 100% sure of where Ronan is. He is safe and happy and he is where he should be. ” Fuck off people. That is not the right way to approach me. Why don’t you just be honest and say, “Oh, hello… I don’t 100% know where Ronan is, but this is what I believe.” Thank you. I can deal with the “I believe part.” I don’t have a problem with the “I believe part.” I won’t even tell you to fuck off. I will politely smile and tell you thank you, instead. I just want some freaking honesty. Is that too much to ask? I don’t think so. Unless you are officially hanging out in heaven, with Ronan, dancing on clouds and then you get to come back here and tell me about it, and put it on a DVD for me to watch…. I am not going to 100% be sure of anything. That’s honest. That’s real. It fucking sucks but I am not willing to sugar coat the life and death of my child just because it makes other people comfortable.

I know what I think I believe. I know what I think I don’t believe. I know that I am still learning and growing, but no matter how angry I get, I still have a shred of faith that I hold on to. It’s dear to me no matter how different or how out of the norm it is. I don’t like normal. I grew up with a dad who used to mediate on top of compost piles. Is that weird? Maybe to some. It wasn’t weird to me. It was his way of teaching me to love nature and the world around us, but mostly to connect to ourselves, our hearts and our spirituality. I know that my beliefs are ever-changing and ever-growing. What I believe today, may not be the same, tomorrow. I find that fascinating and it makes me proud that I have the strength to question everything out there when I could easily just believe in it all, instead. If I want to question if the sky is blue and the grass is green, that is my business. Nobody has the right to try to take that away from me. Not even God himself.

I found a picture of you today, Ronie. I don’t know if I’ve ever called you, Ronie, on here, P.S. Which is weird… because I used to call you that all of the time. Anyway, it was your preschool picture. The one where I can vividly recall the day so well which is unusual for me due to not having much of a memory anymore. You are so beautiful. I put you in one of your favorite orange shirts. Your hair almost matched it in the picture as the color of your hair was so unusual. A copper color almost. Blonder in the summer, but copper was the true color of that mop of hair of yours. I stared at that picture for a long time, before tears sprang to my eyes. I sent a couple of text messages to Dr. JoRo and to my new friend, Robyn. I haven’t really talked about Robyn yet because it just hasn’t been the right time. It’s only been within the last few weeks that we have started to get to know each other. Even though we have more in common than I would like. We both have dead babies thanks to that fuckwad, Neuroblastoma. We met at the NB conference in Austin, Texas. We went out afterwords as a group and I quietly sat back and watched this girl who continued to crack up the entire table with her witty comebacks, smart mouth and silent gun shooting laughter (because she says no sound comes out when she laughs so she shoots guns with her hands instead) Ummmm… who is this girl and can I please be her friend? I got to know her story a bit. I later learned that she not only has one dead child, but two as she had twins after her son, Ezra, and one of them, Price, died due to complications from a very early delivery. It took me a while to wrap my head around this. Wait, two dead babies? Her? Not possible. Not this drop dead gorgeous, funny, young thing sitting right in front of me. Not this gorgeous creature who looks like she is about 19, but has the pain in her eyes of someone who is 3 times her age. But she looks happy. And she can laugh and be carefree and funny! All of the voices in my head were saying, “Whoa. What’s wrong with you? This girl is alright. This girl can function in the normal world. And she has 2 dead babies! Why can’t you?” I left Texas being totally intrigued by this Little Miss Robyn thing. Our friendship has now developed over a series of Instagram/Twitter/Facebook/Texting love. I told her that it had to be the two of you, you and Ezra, who are the one’s making our friendship blossom. Because you know we can help each other, through this. I truly think this is the case. Now that I’ve gotten to know Robyn a little better, I can see that she still hurts so badly from losing her babies. That I know she thinks about them as much as I do you. That will never change. Things will never be alright or better. They are just different. And somedays, different can be o.k. and you can still smile and laugh, but the pain never fades away. As she puts it, it moves from your skin to your bones. It never goes away. I sent Robyn that text below tonight. She called cancer, a whore! I told you we were meant to be friends!

I think we are going to make a good team, me, you, your daddy, Robyn, Ezra and her husband, Kyle. I kind of think that Neuroblastoma, doesn’t really stand a chance. I am sorry that any of us have to know this life. I wish it wasn’t this way. Robyn says to tell you, “Hey,” though. Thank both you and Ezra, for helping us find each other. Please be sure to get into some trouble together. I’ll bet you are the best of friends.

I’m ending this novel here tonight, Ro baby. Much to say still but my eyes are red, blurry and sleepy. I miss you. I love you. I hope you are safe. I am always so sorry. Sweet dreams, baby boy. And of course it is now pouring down rain with a side of extra angry, thunder and lightening. Thank you. I hate being apart from you, just as much as you do.

xoxo

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