Tag: The Ryan House

Rain from Ro

Ronan. So many people made today, not an awful day. Friends, family, strangers and even you. As much as I was dreading today…. too many things happened for it to be anything, but beautiful. For as awful as I was feeling inside, there were too many things in the Universe, spinning around, not in my hands… making today bearable. I survived today and even made it though the day with a smile. Something I don’t do very often anymore. Something I miss doing so very much.

The day started off normally. Well, kind of. I was tired from not falling asleep until early morning. I heard Quinn come into my room around 6 a.m., saying he had a bad dream. I had just fallen asleep a few hours earlier. I wrapped my arms around him and we both fell back asleep. It was 8 before we woke up and I thought about just staying in bed and keeping your brothers home with me today. I knew if I did this, that it would not be a good day. I would have ended up hiding in bed, and not coming out. That is something your brothers do not need to see and I do not need to do. It only makes me feel worse. I got up, got Quinn up and we rushed to get out of the house before school started. We barely made it. I dropped your brothers off and went to Hava Java to meet N and Fernanda for coffee. I found a table outside, which never happens; as that place is always packed. Fernanda showed up and N soon after. I just happened to get a table right next to Susan Levine. She came to visit us when you were there. Gosh, she is beautiful. She knows, N and said Hello. I went up to her and gave her a hug and I thought I was going to have to remind her who I was, but I didn’t. She remembered. Even in my running shorts, no make-up, baseball hat self. She still recognized me as your Mom. I tried not to cry and thanked her for her amazing Ryan House. It was strange seeing her today, on your 4 months, but it felt like it was supposed to happen. Like it was meant to be.

I sat outside with N and Fernanda. We talked and caught up. N had to leave after a short amount of time due to a work call. It felt nice just to see her face. After N left, I sat with Fernanda and we talked about how I want to go back to NYC…. to have a few words with Kushner. We both know it will not do any good, as we are sure he is not capable of dealing with an emotional, angry mother. I don’t care if I don’t get though to him at all. I just want that man to look me in the eyes and tell me he is sorry. How he promised things that he should not have, and that when he couldn’t deliver, he abandoned us. He owes that to you, Ronan. I need closure. It is something that I cannot do without. It is part of my healing process. It may seem stupid and trivial, but it is important to me.

As Fernanda and I were sitting outside, we weren’t really talking, we were just being. I do this with her a lot. As we were both just being, we looked up at the sky. It started to rain. Rain in September. Rain from Ro. The sky opened up and I swear it was just over Hava Java as the clouds were nowhere else to be seen. Fernanda and I both looked at each other and just sat, held hands across the table and cried. We both know the rain was from you. You know how happy rain makes me. It is one of my favorite things in the world. I felt the little drips of the rain, on my lips and the tip of my nose. Kisses from you. It was such a perfect moment. So simple and filled me with a bit of joy. The fact that I had this moment while Fernanda sat across from me, made it even better. I know you saw the two of us today. You wanted us to know that you are still around and that you are taking care of us now. I really believe this to be true. We sat with the rain and it stopped after a few minutes. I didn’t want to leave but had to get on with the day. Inferno Hiking was waiting. It wasn’t much of an Inferno Hike today. You out of towners are going to laugh when I tell you how “Cool,” the temperature was. It was only 101 today so the Inferno did not exist. I cannot believe I am even saying that. Anywhere else, and 101 would be boiling. Not here. It felt chilly today as I climbed the mountain in that degree of heat and not the 115 that I have been hiking it in. I got to the top and sat down on my bench. I actually laid down and cried my eyes out all while watching the most amazing clouds roll in and the wind thrash back and forth. It was really windy up there today. I listened for you. I talked to you and told you I love you. I hope you heard me. I stayed up top for a good 30 minutes and ran all the way back down. Right as I was ending my run, The Bravery song that I played for you last night, came on. So funny. So fitting. So you.

I came home, showered and the doorbell rang. I went to answer it and it was a delivery guy with the most gorgeous purple flowers. A card was attached, and said something about making this day brighter, but no name was signed. So, I have no idea whom these flowers came from today but I am going to say Thank You, anyway. So thoughtful, sweet, and made me smile. They are gorgeous. What’s even more gorgeous is the fact that somebody out there sent me these flowers, without needing me to know who they are. I love deeds such as this. That says so much about a person. So, lovely stranger or friend. Thank you for your kindness today. I love that no recognition was needed. But I’m still dying to know who sent them! If you want to tell, feel free to send me a little message;) If not, that’s o.k. too. I totally understand.

I headed over to see Katie at her boutique. I brought her a Green Tea from Starbucks and a slew of bracelets. She said her phone had been ringing off the hook all day and her email was flooded with requests for your bracelets. I could not believe it. I am still in awe of the support and love that is coming from all of this. I sat at the counter, while she rang up customers. I am surprised at how much at home I feel in Katie’s store and with her. I hardly know this girl, yet her store feels like a second home to me. So strange. I feel like I’ve known her my entire life even though I only met her last week. I am such a skeptic of people too and their intentions. I feel only good vibes when I am with Katie. I know she is helping me because she is just a good-hearted person; not because she wants anything from all of this. She has nothing to gain, she has no reason to put herself out there to gain anything. Her intentions are so true and pure. I love this. As I was sitting at her counter, while she was gift wrapping something for a customer, guess what came on while I was sitting there? Stevie Nicks, “Landslide.” I just looked at Katie and gave her a hard time about putting that song on, on purpose. We both laughed and then the tears started to well up in my eyes. We just kept staring back and forth at each other, both getting teary eyed, while trying to keep our composure in front of her customer. Katie yelled out, “O.K. I can’t even look at you right now.” I just smiled and wiped my tears away. It was such a funny moment. I left there shortly after to grab your brother and cousins from school.

I had a crazy house full of boys. Wild, funny, happy boys. I had 4 of your cousins over to play. 2 of them are staying the night. It’s been a really great night. I love nothing more than being surrounded by kids. It’s my happiness. I took your brothers and cousins to basketball practice. Your daddy is coaching their team again. I watched my two little hoopsters and what amazing players they have become. You would be so proud of them. After practice, your Daddy went to the ASU football game. I took the 4 boys and we decided to try a restaurant, “Beckett’s Table,” for dinner. We have wanted to try this place out for months now. I was so excited to go somewhere new, with my date of 4 boys all under the age of 8. All the boys were really excited too. We sat outside in this amazing weather and had the best service. A really sweet server came out after we had been there for about 30 minutes. We were the only one’s on the patio, eating, but she came out to say Hello and to tell me that she reads this blog. I was surprised, as I guess I kind of forget that I’ve put myself out there in such a way that strangers recognize me. I gave her a big hug and told her thank you. She asked if I Inferno Hiked today and I told her yes. She than said something about how she felt so voyeuristic about knowing all of this stuff about me and asked me if it felt weird. I told her I honestly didn’t think about it at all and I still think that I am really only writing to you, and that nobody really reads what I write. I told her how much I appreciated her coming up to me and saying hello, because I do. So many people won’t and that just sucks. I would rather have someone tell me they are sorry than say nothing at all. As I was gathering up the 4 best dates in the world, we walked out of the restaurant and I smiled and said thank you to the people who were standing by the kitchen. One of the managers chased me out to tell me that our dinner, was on them tonight. I tried to put up a fight but she just was not having it. I wanted to cry but I put on my brave face and told her thank you so much. The kindness of this big city, is really something remarkable. The chocolate covered bacon was amazing. Actually, everything was amazing. Thank you, Beckett’s Table tonight. It was truly one of the best dinners out that I have had in a VERY long time. We’ll be back, for sure:)

I missed you today and tonight, Ro. In everything I did. Even driving in the car. I looked in my rear view mirror today, at the place where you used to sit, behind me. It was empty and felt so wrong. I almost had to pull the car over to throw up. I can’t believe I don’t have you behind me anymore, throwing things at my head, squeezing toothpaste that you had found, all over yourself and smearing it on the windows. This is so fucking wrong. So unfair. So permanent. I still can’t believe that you are never coming back. I still feel like your Daddy is going to come bouncing through the doors with you. I still feel like I made you up in my head, because the pain of knowing that you were here, and are now gone, is just too much. People say this gets easier over time. I’m here to tell you, it does not. 4 months later, and the pain is worse. Your Daddy agrees too. Time does not heal wounds. If you survive something like this, you just learn to live with the pain. You learn to fill the holes here and there, but there will always be a big chunk of your heart missing. That is a fact. It does not get easier, you never forget, the pain does not become less over time. It stays with you, every second of the day until you just becomes used to it. It is just a part of the person you are. Pretty soon, you are so used to the pain of all of this, that you don’t remember what it felt like before. It is as if you have felt this way your entire life. Well, this is my experience anyway. To each his own.

Time to go baby. I love you to the moon and back. I hope you are safe. Sweet dreams, baby doll. I love you so very much.

Goodnight my lovelies. Thank you to everyone who texted me super early this morning to say they were thinking of me, for all the phone calls, FB messages, emails. smiles, hugs, random flowers and a really sweet dinner. I am in awe of all the love that surrounds us thanks to Ronan. Love you all.

xoxo

4 Months feels like 4 Years. Thanks, Cancer. You’re AWESOME.

Ro. I can write tonight. I need to write tonight. It’s been a couple of days I think. I don’t know that I’ll be able to sleep tonight. It’s creeping up. The 9th of every month date. 3:30 a.m. will be here soon. I’ve been dreading it all week. Consumed by it. 4 months is almost here. What was I doing at this time, 4 months ago? Laying with you, while Fernanda sat and watched you so we could get some sleep together. I was cuddled up beside you, which was always my favorite place to be. I’ll bet you Fernanda was rubbing you, trying to sing, “Twinkle Twinkle Little Star,” but she didn’t know the words, so she had to Google them on her phone. I love that story. She watched you because she knew that I needed the rest and I wouldn’t sleep if someone wasn’t keeping their eye on you.  She knew when it was her time to go and I think she left around 2:30 a.m. She kissed us goodbye and left the two of us in the room, alone together. She knew that it was time for you to go. She knew that we needed to be alone. She knows so much. I remember watching you. Your little breaths got so shallow. I remember The Ryan House nurse standing over us and how fast my heart was beating. I looked up at her and asked if you were gone. She told me not yet, but it was going to be soon. I remember thinking how unfair it was that my heart was rapidly beating, yet yours was getting ready to stop. I kissed you all over. I told you I loved you and whispered to you, “Come on baby. Come with me. Let’s get out of this place.” I asked her to go and get your Daddy. You waited for him to come in and kiss you goodbye. Then your little heart just stopped. Just like that. I go over this night in my head, at least 10 times a day. I pray that you know how much I love you, I pray that you were not scared as I worry about that so much. I still can’t believe you are gone and that I am still here, living this life, without you.
I had a mini freak out today. Panic took over after I dropped your brothers off at school. I knew I could not go home to an empty house. I went to Starbucks and sat with my computer and went through emails and paid bills. I emailed somebody at www.spirithoods.com and told them about you and asked them if they had ever thought about donating their amazing “hoods,” to kids with Cancer. I told them how much you loved yours and how many cancer kids would comment on it, but probably couldn’t afford to buy one. I asked them to consider donating some. I actually got a response pretty quickly and I was very impressed. I’m working on them and I have a feeling they won’t let me down. Could you imagine how many smiles their Spirit Hoods would bring to the faces of kids everywhere. Hospitals are notorious for being cold. Remember how much we loved wearing ours together. You looked so cute in yours. I could have gobbled you up and am sure I tried. I miss your little face so much.

One of our favorites met me for a bit today. I was a wreck, but tried my best to remain calm. I don’t think I put on a very good show. It’s fine. I have never been one to pretend with our lovie. No reason to. I talked about how this date is hard for me every month. I tried not to cry and just listened to the words that came my way. I tried to keep an open mind and to not be angry at the fact that you are not here. Our lovie sat and told me that you are not really gone, that you are everywhere. That you will never be gone. I know this deep down, but it does not take away the pain of your physical self not being here. It does not take away the pain of not being able to hear your squeaky voice or look at your beautiful face. Our lovie asked for a smile. I refused as my smile seemed nowhere to be found today. I’ll bet you I went the whole freaking day without smiling. And I always smile for our lovie. That’s how you know it was a really, really, bad day. I know you know. I know it’s on my really bad days, that you find some way to make me feel a little happy. I found that today when I went to visit my new friend, Katie, at her boutique. Her kind heart and kick ass music playlist made me feel good. I joked with her that she must secretly have access to my iPod because I swear she always has my favorite songs playing while I am in her store. Tom Petty’s “Last Dance with Mary Jane,” was on when I was telling her that. Oh, Tom Petty…. how I love thee. And Miss Katy…. this new gorgeous girl you have put in my life, Ro. Thank you. I can tell she is going to be a big part of this new, strange, life without you. Another one of your little gifts. Thanks baby.

The rest of the day was spent in therapy. Therapy with your Daddy and than I went off to therapy alone with Sarah. I felt like my head was spinning most of the day. Than I decided that it should feel that way, as I have many hats that I am wearing right now. I am not sure if this is a good or bad thing; but it is where I’m at. You want to hear all of the hats I’m wearing? I’ll tell you.

The Maya Hat- Trying to take care of me. Whatever that means.

The Ronan Hat- Trying to connect and still trying to take care of you. It’s all I want to do.

The Mama Hat- Trying to be a good Mama to your brothers. I’m naturally a good mom, so this is not hard. But it still takes a lot more effort than it used to.

The Wife Hat- Trying to be a wife to your Daddy. Failing.

The Therapy Hat- Sarah, Dr. Rachel, Dr. Joanne, and Dr. Beth with Liam and Quinn. FUCK. That is a lot of therapy, but so necessary.

The Friend Hat- Trying. Failing. I miss my friends.

The Foundation Hat- My busy work. Trying to get everything figured out. I like this hat. It gives me HOPE that I am keeping  you alive; even though you are gone.

The Not Slitting my Wrists Hat- Want to. Everyday. Everyday I survive without doing this is a fucking miracle.

The Grieving Hat- I’m doing this. In my way, alone. Or in the presence of therapists. I’m working hard to do this. I don’t want to stuff away any pain because it will all come back to haunt me later if I do.

So baby. What do you think about all of that? That’s A LOT of stuff. Remember back in the day, when all we had to worry about was naps and grocery shopping? That life does not even seem real anymore. I feel like I’ve been living this life now, forever. What a stupid, spoiled brat I was. I’ve got a lot of making up to do for being such an ignorant human being. I’ve got a lot of work ahead of me. It’s fine, baby. I’m not scared. I know you are going to help me, therefore, I can do anything. Fuck You, Cancer. Right, Ro?

My new friend, Heather, also stopped by for a visit. She is the Queen of random, surprise drive-by’s. I just happened to be home and was so glad to see her face. We sat in the kitchen today and talked for awhile. She is another one of those peeps with such an amazing heart. She always seems to appear when I need  a bit of cheering up. When I need a little kick in the ass to remind me of how strong I am. She told me that she tells someone, at least once a day, that I am going to do for Childhood Cancer, what Lance Armstrong has done for Cancer in general. WOW. What a compliment. Talk about picking a girl up, when she is down. I took a minute to think about what she told me. I started to get overwhelmed, but a calmness washed over me. I think she is right. I think she is right because I have you to fight for and the strength you give me will help me change things, in a drastic way. Everything I used to be scared of, Ro…. no longer exists. I am here, on this earth, to change things for you. Because you know that you did not deserve to die, nor does any other child suffering from Cancer. Somebody has got to take this fucker down. Super Ro to the rescue!!!!! I know we can do this, little man. Heather, knows we can do this. She lit up like a little Christmas Tree when she was telling me this today. It was so stinking adorable. It was so beautiful. It was so you.

Oh, Ro. Nice song pick tonight as I was just getting to end this post. Seriously! That just got you the BIGGEST SMILE! I love you to the moon and back, baby. I hope you are safe. You are so right, this is absolutely not the end.

THE BRAVERY

Tell me
Come on tell me what you can
Even as you wait for death your wiser than I am
Tell me what does it mean to exist
I am not a scientist I must believe there’s more than this
And I can not accept
That everything that’s real
Is only what our eyes can see
And our hands can feel

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
Are just as real as the time we spent
You’ll always be close to me
My friend
This is not the end

I see
I can see you’re still afraid
Weathered like the silver moon, on you even fear looks good
I wish, I wish I had some words to give
But all that I can think to say
Is I’ll be with you everyday

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You’ll always be close to me
My friend
This is not the end

La la la la la
This is not the end
La la la l al la
This is not the end

I don’t care
I don’t care what you believe
As long as you are in my heart
You’re just as real as me
Maybe
Maybe even more
Someone who’s touched so many lives
can never, ever die

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You always be close to me
My friend
This is not the end

I miss you. But I smiled though my tears for you.

 

 

Ronan. Hi baby. Missed you today. I woke up your brothers early. Well, early for us since we have been lazy beach bums sleeping in on most days. 8 a.m. was early for us today. I was tempted to let them sleep in as they looked so cozy and sleepy. They had to be at surf camp at 9 a.m. though, so waking them up was necessary. They so did not want to go. The both of them have been complaining that I signed them up for surf camp since I told them about it a month ago. Too bad, so sad, is what I basically told them. They kept insisting that they were not going to like it. I told them they wouldn’t know until they tried. It’s all week from 9-12. I got their cozy little buns out of bed, dressed and fed, and we headed down to the very cold beach this morning. They put on their little wetsuits and before I knew it they were off and running into the water. Most parents just dropped their kids off. I stayed and watched, took pictures, helped them and even got my sweats soaking wet as I was helping a little girl named Brooke, get out into the ocean. She was sooooo cute that I couldn’t resist. It was the best 3 hours I’ve had in a very long time. I was surprised how much I enjoyed just sitting and watching them and I was so impressed at how easily they picked up on it. Especially Liam. He really took to it and was really far out in the ocean with the instructor. He surfed up until the 3 hours were up. I am so proud of both of your brothers. They ended up loving it and can’t wait to go back tomorrow. I saw you while I was watching them. Those two little dolphins I saw the other day were out really close to Liam. I told Quinn it was you watching over Liam, to make sure he was safe in the ocean. He smiled and agreed with me. Thanks for that today, baby.

After the surf lesson was over, the boys were freezing so I took them over to the hot tub to warm up. Your daddy came down and brought down lunch to BBQ. We spent the next couple hours at the pool and the hot tub. After that, we headed back up to the condo. The boys were wiped out, but Quinn really wanted to rent one of those Surrey bikes that are in front of the Del. He has begged for weeks. Liam had no interest in going, and Woody had to work, so I headed off with Quinn to rent our bike. We rode all over the Island and ended up the school here. Quinn got a big kick out of my crazy driving and jumping the curb with our bike at the school. He was cracking up and I explained to him the importance of doing “boy,” things like that. I told him if you had been there, you would have made us do it over and over. In your honor, we took our Surry bike and jumped the curb 4 more times. We laughed the every time. It made me miss you so much, but it felt good to laugh with Quinn. I could tell the day meant a lot to him and it meant a lot to me as well. When we finished with our bike, we walked over to the Hotel Del to get him some ice cream. After our big day out, Quinn came back here and 20 minutes later, he was passed out cold. He slept for a few hours and woke up starving so I took him to get dinner. Liam, once again did not want to go. He is such a little homebody.

I have not had a day like today in a very long time. One where I almost enjoyed myself. Spending time with your brothers, watching them do something new, is the closest I’ve come to almost feeling happy since you left us. Happy, but I missed you a lot too. I know those two things will go hand and hand for the rest of my life now. I’ll always picture  you with us, in everything we do. I know today, you would have been out on that beach with me, with your boogie board, watching your brothers and mad that you couldn’t be out surfing with them. You were always trying to keep up with them and I was always amazed at how well you did. Your fire and zest for life was something I have never seen in anyone in my life. You took everyday by storm and that is something that I miss doing with you. Together, we were unstoppable. I miss having you everywhere with me so much. If you can’t tell, I have a  new little shadow now and his name is Quinn. He is stuck to me like glue and I am really trying to embrace him as much as possible. I can feel myself reconnecting to your brothers again, but Quinn is working extra hard to be by my side 24/7. Liam is so independent, that he is happy anywhere and has been spending a lot of time with your daddy. They are such similar creatures. I love watching the two of them together.

That is all for tonight my little monkey. I’ve got to try to get some sleep as we have another early day of surf camp tomorrow. I miss you more than words could ever say. I love you to the moon and back, baby. I hope you are safe. I still worry about you so much. I would give anything to be able to kiss those sweet little lips of your.  Sweet dreams, Ro.

I’ll follow you into the dark

Ronan. Hi baby. I miss you so much. This morning I woke up late and so did your brothers. I didn’t fall asleep until about 3 a.m., so we slept in until around 9. I don’t know what exactly happened this morning. Actually, I do. A couple of things. Your daddy called. He was upset. He said he had awful nightmares about you all night long and did not sleep well. His dreams of you are always the same. He dreams of the two of you playing together, and you are so happy. But then you die. Hearing your dad’s voice today shook me to the core. He was so upset, which in turn, upsets me.  I then got on the internet and I was obsessing over Neuroblastoma stories, treatments, doctors, etc…. It was like I was in a black hole and could not come out. Even though you are gone, and your little life could not be saved, I sit and obsess about what we could have done differently. It’s pure torture, but I also find the need to educate myself as much as possible. I cannot get this Dr. Sholler out of my head either. After an hour of reading, I was in a bad place. I came out of my room to make your brothers breakfast and the fighting between them started up. I lost it. I mean, completely lost it. I started bawling in front of them, telling them how I could not handle their fighting today. I told them how it was not fair that you just died, and how they need to be so thankful that they have each other and LIFE, as you didn’t have a choice to live life anymore. I told them, as I was hysterically crying, that I was so sad about losing you that I don’t even know what to do anymore. Uhhhh… maybe a little too heavy for 7 year olds, but today, I couldn’t calm myself down. I think I scared them and I know it upset them to see me so upset. They both ended up crying and wrapping their arms around me and telling me they were sorry. We sat for a while and cried together and talked about how much we miss you and how much we are all hurting. I told them how it is good for them to cry, how I understand that they are boys and they are going to fight, but today, I needed them to cut me some slack. Today, I just could not emotionally handle the fighting that I know is a natural part of being brothers. But today, I just needed a break. They gave it to me and after we cried and I got them settled down, I had them sit at the table and do some writing and workbooks. I mainly did this so I could get in my phone call with my therapist, Sarah. I closed my bedroom door and as soon as Sarah picked up, I was a blubbering mess. I don’t remember much about the beginning of the conversation, but I ended up calming down. I think she even got me to laugh about a tee-shirt we were joking I was going to have made. In fact, I know she made me laugh which is why I love her so much. She has that same dark sense of humor that I do. I eat that stuff up. It works for me. We talked a lot about you, of course. She told me how it’s like I’m living in a paradox world. I couldn’t agree more. That is so how I feel. We talked about your old soul, as we are both convinced that you are one. She thinks I am one as well and we both think that I have known you in a past life. I have no doubt that we have been together many times before you were born, Ronan. It is why our bond is so strong. After my talk with Sarah, I felt better. She pulled me out of the hole that I was ready to bury myself in today. I got off the phone with her and got Liam and Quinn ready to head out to the Padres baseball game with your Papa Charlie, Uncle Larry, and all of your cousins. They needed a day out and the baseball game was the perfect place for them.

Your Mimi Kay asked if I wanted to head over to Fashion Valley with her. I said, of course and we spent the day together. We had lunch and shopped a bit. We had a good talk about you. She told me how Papa dreams about you all the time and how you always have your hair. Mimi says when she dreams of you, you are still bald. I told her how I don’t dream about you. She said she is sure that I do, that I just don’t remember it. I hope she is right. Not dreaming about you is really hard on me. I would give anything to see you, even if it is only in my dreams. That is the best it is going to get for the rest of my life. I don’t even know how to comprehend this. How can you really be gone. How can only being able to dream about you ever be enough? It won’t be, but it’s all I have now, Ro. So please, come and see me and let me see you. I’m not scared and I miss your face so much.

After my day out with Mimi, we returned back to Coronado. Your brothers were on the lawn playing baseball with your cousins. I put on my running clothes and ran a fast 6 miles. After my run, I went and played baseball with everyone. It was sweet and fun but it also hurt. All I could do was picture you playing with us. You are always missing from everything we do and it is so hard to go on with everyday things like playing a baseball game. You would have been proud of the ball I caught in the air that got Liam out. You would have been proud of the way that I thought of you when I caught that ball. I think of you in everything I do. After the baseball game, we borrowed your cousin, Layne, for the night for a sleepover. I told you the quietness of having you gone is eerie. Having someone around to play with your brothers is good for us. The louder the better. It makes them happy and seems to help them. It helps me too. The quiet scares me and is something that I am not comfortable with.

If I could have any wish in the world, Ronan, it would be for you to come back to me. Please. I’m begging you. I don’t know what to do without you. I feel dead. I don’t think I’ll ever feel alive again. I know I have your brothers and I know how lucky I am to have them, but that still does not make the pain any better. How can I live without you? Is this whole thing even real? I said today to Sarah, I feel like I’m on that show “Lost.” Is this what Purgatory is like? I feel like I am trapped between heaven and hell and there is no escaping. All I want is to be with you. I cannot believe you are not here for me to kiss, to hold, to watch you grow up and play sports, to take care of when you are sick. I can’t believe just 30 days ago, I gave you a bath after you died and then had to leave you behind in a room as your body was carried out. I cannot believe the last words  you really said to me were to “Stop being sad, Mom!” That’s it. That’s all I get? It’s not good enough, Ronan and I don’t know what to do. I need you to guide me and to tell me that I can get through this because as of now, I don’t even want to. Everything hurts too much.

I’m sorry for unloading on you, little man. I talked to Doriet tonight and she is in the same place as I am. I hurt for her so much too. Esther passed away May 6th. You, May 9th. Two of the most special old souls that have ever existed. You two have brought us together and I know it is because you and Esther are together now, watching over us. You two will take care of each other just the way Doriet and I will take care of one another. By talking about you, loving each other, and going on because of the love we have for the both of you. Somehow, baby. Somehow I will get through this.

I love you Ronan. I love you to the moon and back baby boy. Sweet dreams.

xoxo

Where is Ronan?

Somehow, I am in my cozy bed at my house. I cannot get out of my bed. It feels like quicksand and even when I try to get up, it pulls me back down. My house and heart feel really empty. I hear people, but the biggest voice of all is missing. “Where is Ronan?” That is what I asked Woody. He just starts to cry. But really, where is he? Is he playing in his bedroom? Is he in the backyard? Is he causing trouble and running about the house? Is he playing Star Wars with his brothers? Then I remember. Ronan is gone.

Ronan really left a couple of days ago. His pain got really bad from his little liver failing and all we wanted was to keep him comfortable. The Ryan House was quiet but full of the people who are our family. Charisma spent the weekend, Susie came, Gay, Melissa, Stacy, Bethany, Tricia, Sarah, my mom, Mimi, Papa, Uncle Scottie, Auntie Karen, Aubrey, Marisa, Danielle…. I cannot remember who else. Mother’s Day was quiet and I stayed by Ronan’s side most of the day. I whispered a lot of things in his ear and although he was not responding much anymore, I know he could hear me. I told him all the things that filled my heart. How he was the best thing to ever happen to me, how he changed my life, how it was time to stop fighting, and just relax because I was going to take care of him forever. I sang to him, loved on him, and said our famous little thing we always said to each other, “Just you and me, baby.” As I sat next to him I prayed so hard. I asked for a few things. I asked him to please not leave me until Fernanda returned from her trip, I asked for him to please not leave me on Mother’s Day, I asked him to leave peacefully in the night, with me by his side. I begged the Heavens above to not be cruel in the way that they took him. He had enough and I wanted him to go in the most peaceful way possible. For the first time in his life, my little boy listened to everything I asked of him.

Quinn spent most of Mother’s Day curled up beside Ronan. I explained most of what was going on to him. He wanted to know why he couldn’t understand what Ronan was saying anymore and when he would start talking normally again. I told him that he was so sleepy, that he wasn’t going to be back to the way he was anymore. Quinn cried and slept most of the day away by Ronan’s side. He needed to have his time and his goodbye with him so I let him take all the time he needed. It was hard to watch my almost 8-year-old hurting so badly but it was a chapter that he needed to close in his life with Ronan. I wasn’t about to push him away. I talked to Liam about staying at The Ryan House with us or going home. He said he wanted to stay to be with Ronan and us. I told him how Ronan was not going to get better and that he needed to say his goodbyes. Little tears filled his eyes and he said he knew, but he still wanted to be with his brother. After 8 months of shipping my twins off I had decided that enough was enough and they would stay with us as long as they wanted. Fernanda had a firm talking to with me about this decision. I told her I would meet her halfway and only let Liam and Quinn see so much and how they would not be allowed to sleep in the room during the night with Ronan and myself anymore. They would have to sleep with Woody in the room across from us. She seemed happy with that outcome.

After a quiet Mother’s Day, night soon filled the air. I slipped out and let Mimi and Papa lay with Ronan and I tried to calm myself as much as possible. I was panicking, trying to come up with what I could do to save him and his little body that was failing. I asked for oxygen to be placed by him, to help with his breathing, I texted back and forth with my friend, Doriet, whom just lost her little girl. She was giving my ideas on ways to save him. I talked to my friend, Diane, who lost her little boy to this nasty disease years ago. I said things to her like what if he really didn’t want to go, but was fighting to stay alive and I was just pushing him down with all the pain medicine. She calmly talked me off the ledge and told me that the cancer had invaded his liver and there was nothing medically we could do to save him. I was still fighting for him, even though I knew he was ready to go.

I sat in the Sanctuary room with the girls for about an hour last night. Fernanda, my mom, Melissa, Sarah and Tricia. We had a lot of laughs and Sarah told us how she was getting a purple star tattoo this Thursday, on Ronan’s birthday. Before I knew it, everyone in the room had decided to go with her. This made my heart happy as the love of the people surrounding me is unbelievable. They truly are the most amazing girls alive. Around 10 p.m. it was time for me to get back to Ronan so everyone left except Fernanda who said she would stay and watch Ronan sleep so I could get some rest. I had the twins come in and kiss Ronan goodnight and I curled up beside him. I whispered little things in his ear and sang to him. I fell asleep as I could relax a little knowing Fernanda’s watchful eyes were on him. His breathing was becoming softer, his little feet were becoming so cold. Fernanda sang to him and rubbed him. I fell in and out of sleep. She left the room about 3 a.m. and the nurse taking care of Ronan patted me around 3:20 a.m. Ronan was ready to leave. I said to her, “Is he gone?” She replied, “Almost.” I grabbed on to my baby boy, whispered in his ear that I loved him, but it was time to go so he needed to come with me. I kept saying, “Come with me, Ronan. Let’s get out of here.” The nurse went to get Woody and when he got to the room, he kissed Ronan goodbye and that was that. His little heart just stopped.

Somebody came in asking if she could bathe Ronan with warm water and if we wanted his clothes changed. Woody left the room to make phone calls and I asked if I could please give him his bath. She said of course and brought me everything I needed. I stripped him down and washed his little body. I remember looking up at her and saying how no mother should have to do this. She replied, “You’re right. You are very brave.” I remember thinking to myself how I couldn’t believe I was giving my dead child a bath. It was so weird, yet so peaceful. I put on his favorite red Small Paul monkey pants, his Star Wars shirt and little Ralph Lauren socks. I kissed his cold little lips a dozen times and kept thinking I couldn’t believe I wasn’t ever going to be able to kiss them again. Woody came into the room and we sat I just stared at our son. We cried, held each other while looking down at his little body. I kept feeling him and kept telling Woody he was so stiff. It was all surreal to say the least; but I felt like Ronan was right there with me. Just because the shell of his body was gone, his spirit was still in the room. It has been with me the entire day which is maybe why I feel so at peace.

Leaving the room was the hardest part. Woody said his friend that he went to high school with was waiting outside as they were ready to take Ronan away. I told him that I wasn’t leaving him and he grabbed on to my arms and tried to pull me away. I cried that I promised I’d never leave him and it took awhile for Woody to convince me that he was already gone. I went and kissed his toes, lips, and pinky fingers one last time. I walked out of that room and went straight into the arms of Woody’s friend, Ardra, who runs the mortuary. I held onto her and told her to take good care of my baby boy and not to leave him. She cried with me and promised she would. I walked away before I saw them carry out his little body. I went into a room where my mom, Kay, Charlie, Scottie, and Auntie Karen waited for Woody and I. We sat for a while and no words were said as they were not needed. Woody and his family went to pack up our rooms and I sat with my mom and Karen. We talked quietly about what had just happened. We talked about Ronan and his life and how he had inspired so many people. That little boy taught me more in his almost 4 years of his life than anybody I have ever known. He was the proudest, most beautiful child that has ever touched this earth.

After Ronan’s body left The Ryan House, we had to go and wake up the twins. I quietly tapped Liam and told him it was time to go home. He was confused and I did my best to explain things to him. Woody picked him up and carried him out of the house. I snuggled with Quinn a bit and woke him up and said the same thing. He wanted to know if Ronan was coming with us. I explained to him that Ronan would not be with us anymore. He cried and it took awhile to get him out of the bed. He said he needed more time and I gave it to him. I had Ronan’s “Gigi,” in my arms and I gave it to Quinn and told him he could have it now. He wrapped it around his shoulders and I told him he could go into the room where Ronan had been and kiss his pillow. He did so and also laid down on the bed where Ronan had been hours earlier. I let him take his time and Woody then came and carried Quinn out into the car. The four of us drove home together as the sun rose. Ronan’s car seat was no longer in my car and I sat with Quinn on my lap and watched as Liam sat in the back as the tears poured down his little cheeks. We talked a little bit on the way home about Ronan and how he was no longer hurting and how peacefully he went to sleep. We all stumbled in our house and I insisted that we all lay down together and get some sleep. Liam tried to go to his room, to be alone but I told him that was not happening as we all needed to be together because we were all hurting. He listened and snuggled up between Quinn and Woody. I took some sleeping medicine and passed out for most of the day.

I sent my Mr. Sparkly Eyes a text and told him how I could not get out of bed. I asked him how I was ever supposed to face the world again as I never went anywhere without Ro, my little partner in crime. I don’t know the answer to this but I know Ronan will help me in everything that I do. He will guide me for the rest of his life just like he did his entire existence. Nothing I do will be without Ronan’s help and the love that we have for each other. It is eternal.

I know I don’t want to end this story. I want it to go on forever. I want Ronan to never stop inspiring you all just because he is gone. I want his name and our love story to live on forever. I want to keep writing to all of you. I hope that is o.k. I’m not sure what I will write about as that child was my life. But just because he is not here, does not mean our story has to end. He is with me and will continue to fill me with his love everyday. His love alone will keep me going and strong. I will not crumble up and die because he is not here. I will not let him down and I promise to make him so proud of me as I know he is watching everything that I do. Those eyes will forever be burned into my soul, the smell of his sweet skin, the touch of his perfectly plump lips and his little giggle will never be forgotten. My twins will be better boys because of him, my marriage will be stronger, and I will never take a second of my life for granted again. I would give anything to have him back and I don’t know if it has even hit me that he is really gone. I find peace in knowing that he is no longer hurting but cannot deny that my heart is broken beyond repair. All I want is my child back. My healthy child back before all of this.

I feel very angry and let down by a lot of people; but mainly by medicine and the doctors of the world who have not figured out this nasty disease. Mostly life in general as I have learned the hardest way how cruel it can be. Watching my child die from Neuroblastoma t was the most horrific experience of my life and nobody should have to go through that; especially in this day and age. I made a promise at the beginning of all of this to help find a cure and now I am more determined than ever. A cure begins with awareness and funding so I am going to work for the rest of my life on that part of all of this. All in the name and honor of my Ronan Sean Thompson. The brightest star in the sky.

I cannot thank all of my friends and family enough for their love and support through all of this. I would not be in such a peaceful place without them. I have no doubt that Ronan’s journey is not over… it will just come in a different form now. I cannot thank all of you who have been following me this blog and spreading the word about Ronan. We love you all so much. If you see me, please don’t be afraid to come up and tell me hello and hug me. Please don’t be afraid to tell me how sorry you are because of the pain you know we are all in. But please, don’t tell me things like God has a bigger plan for Ronan, how he belongs in heaven, how he is happy with God now…… because all of those things just piss me off. And I will punch you. I will never come to peace with any of those fucking saying and unless you have just walked through my exact shoes, you have no right to say those things. I understand if it is how you will make sense of all of this but to me, you can’t make sense out of nonsense and that is exactly what all of this is. Complete and total nonsense. This will never make sense to me as I know our family did not deserve any of this pain; especially not Ronan.

That is all for tonight my loves. Goodnight to my sweetest baby boy; Ronan Sean. My little seal, my little monkey, my little everything. I love you to the moon and back a million times over.

xoxo



Not a kissing day

I sat here at The Ryan House all day with Ronan, rubbing his little leg that is hurting him so badly. We had a lot of visitors in and out. Ronan slept most of the day while I had the chance to sit in our room and see a lot of friends and family. I was hardly awake when Niki came by. She sat by me on my bed and held me while I sobbed in her arms as I knew I would the minute I saw here. She brings out the raw emotion in me for some reason. I held on to her and stroked her insanely gorgeous red, wavy hair that I am so in love with. After I let go, she sat by me and rubbed my back and I think I fell asleep again. Her visit was so peaceful. I had lots of other visitors…. Melissa, Patty, Sarah, Auntie Karen, my Aunt Sheri, my sweet cousin, Shannon, my mom, Jim, Liz, Olivia, Luke, Heidi, Stacy, Fernanda, Tricia, Tiffany, Dr. Maze, Katie, Addison, Lane, and I think a few more of the cousins. It was busy here but Ronan didn’t seem to mind.

I spent a lot of the day, curled up with Ronan, thinking, thinking, thinking. It’s not a fun place to be right now. Woody and I met with a doctor today about getting Ronan in over at St. Joe’s tomorrow to do radiation on his legs. It will be  a one time treatment, and we are hoping it will subside his pain. The pain medication he is on is just not cutting it. Woody and I both decided he can handle it as we know how strong he is on the inside. It will be fast and painless and we are praying it will give him a little relief. The pain is swallowing him whole as he cannot even move out of bed and even me carrying him to the bathroom is torture to my little guy. I cannot just stand back and do nothing if there is a chance this may help him.

Woody has also been in contact with Dr. Sholler from Vermont. She has a trial that has opened up and I am not going to say much as of now; but if we can get Ronan comfortable enough with his pain, we are talking about making the trip out to San Diego to start this 5 day treatment. We have sat all day and weighed our options. I get that my first priority is keeping Ronan comfortable, peaceful, and happy. But as of now, he is none of those things. I am not foolish and I am not unrealistic. My child is dying right before my very eyes. I do believe in the power of miracles, but our miracle is not going to come in the form of him, lying in this bed, while I sit back and do nothing. I know that God is not going to open up the heavens above and heal my baby. This cancer is going to eat his little body alive and as of now, I am just sitting back and watching that happen. That to me, is not acceptable. I am loving him with everything I have; but if someone out there is willing to take a chance on Ronan, I believe I have to take it. His miracle is going to come in the form of medicine combined with the power of prayers. But prayers alone are not going to save Ronan.

Woody and I have not made any decisions as of yet. Obviously we have to weigh the pros and cons very carefully. But as I said in the beginning, I am not going down without a fight and neither is Ronan. It is just not in our nature. By sitting here and doing nothing, I feel like we are not fighting if there is even the smallest chance that this treatment could help Ronan in any way possible. If this doctor ends up telling us no, than we will accept the time left we have with Ronan. If I know in my heart that Ronan is ready to give up, then I will not push him. I know he is not there yet… I know the soul and spirit of my child and he is not ready to go down so easily. How can I possibly give up on that if there is the slightest ray of hope? It is eating me alive just sitting here, and doing nothing. Loving him is not enough if I can still be fighting for him and his life. I cannot let him go yet. I still feel in my heart that it is not his time.

So, the word inhumane has come up a couple times tonight. I’ve decided it’s a word that should not be associated with parents who are fighting for the life of their child with all they have. I believe to do otherwise is inhumane. We only want what is best for our son and we are struggling to figure it out. We as parents do know that we have to know in our hearts that we have done everything possible for Ronan. Even if the outcome turns out the same. So, as parents we will take the next few days, to watch Ronan carefully and make the decision that we feel is best for our family. If we do decide that enough is enough, it will be because Ronan has led us to that decision. This is still his journey, his life, and we will respect that. But it will not be without exhausting every possibility. We do not want to put him though anymore, but how do you give up when there still may be a chance???? I don’t think that you do. I know my child better than anyone, and today when I tried to kiss him and he yelled at me that “It’s not kissing day!” I knew right then and there that his little feisty spirit still exists. It’s my job as a mom and as the adult to help Ronan fight for I know what is in his soul. He does not want to leave us; he does not want to be anywhere else. We deserve our son, Liam and Quinn deserve their brother, and I am not throwing in the towel. I know this disease well enough now to know that things can change in an instant. I just pray that they change in an instant for the better and not for the worse for us.

We will start off tomorrow of a CT scan of Ronan’s little body, that is so badly beaten up and bruised. We will then do his RT without his anesthesia. I talked to him about it tonight and he said he will do it and make Dr. Maze proud and not need any sleepy medicine. The only thing I worry about is keeping him comfortable enough. I know he can do it, he will push through the pain if he has to. This is something no child should ever have to go through and I am beyond sick about it. Looking at Ronan’s banged up body makes me shutter. Listening to the sounds of his screams from the pain is something I will never be able to get out of my head. I swear to god on my life I will fucking live long enough to see a cure for this awful disease. I swear to god I will do whatever I can to help find a cure so no child has to suffer the way I have had to watch my son suffer. No child deserves this pain and no parent deserves this heartbreak.

That’s all for tonight my peeps. Sweet dreams to you all. G’nite my Fernanda. I miss you so much already.

xoxo

Music to my ears

I’m feeling peaceful tonight. Today, was a very good day in terms of victories for Ronan. It started off with his little words this morning, “Mom, I have to poop.” Praise the freaking lord. It’s been 5 days of him not pooping and we have been giving him Miralax around the clock. I full on had a pooping party dance after my little man did his job. Victory! He was up most of the day, although still in a lot of pain. This morning, our sweet, “A,” from the clinic came by. She sat with us for a while and Ronan normally kicks everyone out, but he was so calm while she was here. He connects with her. Playroom Kathy from PCH also came by with so many Star Wars toys and the most beautiful Star Wars quilt which I am assuming she made. Kathy, it is so gorgeous. Ronan has been playing with his Star Wars guys on it all day. Love you so much. Thank you for sharing your smile with me today. I’m only sorry Ro missed it due to him sleeping. My sweet friend, Kristen, Kati, and Olivia came by as well. It was good to see them all. The usual peeps were here too. My mom, Jim, Luke, Heidi, Liam, Mimi, Papa, Auntie Karen, Trish, Stacy, Fernanda, Gay, and Pam. Christy and Heidi stopped by too with a ton of food. I’m feeling a little braver about seeing people so I ventured outside of our room. Ronan is so loved. I’ve never seen so much love for one little boy in my entire life. It makes me feel so happy.

We have been talking to Dr. Sholler about some other treatment options. I told you we are exhausting anything possible. We are talking about doing radiation on his leg. I’m not giving up yet if there is even the smallest amount of hope. I won’t travel far with him, but if this doctor is willing to see us in San Diego, we are talking about making the trip. We may start radiation tomorrow on his leg. Anything to help him with his pain. We are not committing to anything yet, as we know what the odds are. But we are not willing to close the door just yet. Ronan wants to be here with us and we are going to continue to fight hard for him until he lets us know otherwise. I will know, as his mama, when it is time to let go. It’s not time yet.

I got out for a bit tonight. I was nervous about it but Woody insisted it was fine. I had the chance to call back a couple of people. My angel, Charisma, is flying in this weekend for a quick visit even though she is bombarded with auditions. YAY FOR THAT!!!! Both her coming, and the auditions that are coming her way. I cannot wait to see her and am so grateful that she knows how much it means to me to see her. I called back my other dear friend, Susie, who lives in Colorado. All I had to do was say the words and she is now coming in for a quick visit this weekend as well. I don’t know how much time we have left with Ronan. Could be days, weeks, months….. praying for forever. Regardless, it means a lot to me to have those two see him. It will be good for me as well. It felt good to be out, tonight, breathing in the fresh air, as I sat outside with my dear friend who brings me much peace and comfort. I even managed to eat a taco for him.

I came back to the Ryan house and Ronan has just finished his platelet transfusion. Luke and Quinn were in the room with him and we all sat around together while Luke played music from my iPad for Ronan. Luke was being his normal, very animated self, and was singing and dancing out loud. I could not believe my ears when I heard giggles coming from Ronan. He has not laughed in at least a week. It was all thanks to Luke. I about started bawling. My baby boy is still in there. As much as he is hurting, he so badly wants to come back to us. I heard it in his laugh tonight. I will never forget that moment. Luke has been such a gift to us during this time. He brings our family so much happiness, especially Ronan. He is sleeping over at The Ryan House tonight, as well as the twins. We all need to be together as much as possible.

I’m tired tonight and as I said, I’m feeling somewhat peaceful. I’m going to try to get a little bit of sleep before Dr. Maze and everyone else kicks my ass. I’m not taking my sleeping medicine anymore, but tonight I feel like I can maybe sleep without them.

Somebody posted me this comment on my blog tonight. Loved it and wanted to share. Thank you, friend whom I do not know.

I read your latest blog “the next person that tells me…” I just want to say Sorry for those of us that are inconsiderate with our words and try to say things to make us feel better before we think of how they may affect you. I share your blogs on my facebook and ask my friends to pray for you. I wear a bracelet daily so when I see it I remember to pray for you often. My heart aches for you. My sister recently lost her granddaughter and posted this comment about people speaking, I thought you would appreciate it. She added your comment to her previous post to reiterate the impact of commenting before we think about it.

Before you speak…
by Connie Phelan Iddings on Tuesday, May 3, 2011 at 12:00pm
“Everything happens for a reason.You were given this because you were strong enough to handle this. God has a greater plan for your child. Your child wants to go home, where he belongs in Heaven, so just let him go. At least you had as long as you did with her and you have other grandchildren, at least you can be grateful for that. You’ll be a better, stronger person because of all of this. ”

These are comments given to a Mother whose child is battling for his life and to other Mother’s and Grandmother’s who have lost their babies.

Think about it. Seriously. Stop and think about it. To a Mom and to a Grandma, there simply does not exist any justifiable “reason” for our babies to suffer and die.

I am sure that God is taking care of our babes, but when you say God had a better plan, what exactly are you implying? That we somehow didn’t deserve our children-our parenting plan didn’t suffice while millions of others did? That God handpicked our babies to pluck out of our arms because he had a better plan? God is not cruel. His plan is to bless and not to harm us. (Jeremiah 29:11) I’m pretty sure it had very little to do with “God’s perfect plan.” I like how William P. Young author of The Shack puts it,

“Just because I work incredible good out of unspeakable tragedies doesn’t mean I orchestrate the tragedies. Don’t
ever assume that my using something means I caused it or that I need it to accomplish my purposes. That will only lead you to false notions about me. Grace doesn’t depend on suffering to exist, but where there is suffering you will find grace in many facets and colors.”

Never tell a parent their child is better off or tell a mother that her child wanted to leave her even to go to heaven, it’s like sticking a knife in her already broken heart. We don’t want our children to suffer. No good mother does. But, to add guilt to her grief by suggesting she is being selfish for going to any and every length to help her child survive and for wanting to hold onto her child as long as absolutely possible is unforgivable.

Don’t think for one moment that we aren’t eternally grateful for every millisecond of time we were given. Whether it is a few moments, or decades it matter not, our baby is now gone. We are grateful for all the yesterdays but we still want the tomorrow’s. We want our children with us today, right now and would give absolutely anything to have them.

Don’t get us wrong, we love and are grateful for all our children and grandchildren that are still with us, as we’ll also be for those we’ll be blessed with in the future, but that does not diminish our love or desire for those lost.

Please never, ever tell a grieving Parent or Grandparent that they will be stronger, better people because of the death of their child. No one wants to benefit from the death of a child. We know you mean well, but it plants thoughts in our mind like, “What if I was a stronger and better person to begin with? Would my baby have been spared?” Is that your intention? I highly doubt it.

Before you speak, pause to hug us and think. Tell us you are sorry. Let us cry and talk as much and as often about our baby without being made to feel guilty that you feel uncomfortable. Please don’t tell us that you think it is time we move on, leave that to the well-trained therapists. Our grief may remind you that we live in a world where children die before they are suppose to; a fact you may want to forget, but we don’t want anyone to forget our babies. We also don’t want anyone else to suffer needlessly if there is anything we can do about it. Therefore, we will keep talking about our children and about their death if we think it will help someone. It is important for everyone that we do.

We know it is difficult. Believe me, we know! We understand most people have no idea what to say or that some things are far more hurtful to say than they ever realized. I tell you now so that you will know. I, myself most likely said these very statements in an attempt to comfort others in their grief and offer answers for questions we all have, that there are simply no answers to-at least for now.

I close with a statement from a grieving Mother, “I love you all as always, as long as you don’t say any of those idiotic things…to me. Even if you think them, please don’t say them. They don’t give me strength at all.”

Strength is what we need and what we need more than all is your unconditional love. Before you speak, pause and just give us your love.

God Bless, my prayers are with you continually

G’nite to you all. Ronan and I love you to the moon and back.

xoxo

The next person that tells me Ronan wants to go home, to heaven, can piss off

Holy Fuck. How did I get here? I’m at The Ryan House; the most beautiful place we have been so far on this journey because my son is going to die? And everybody knows this except me? Am I in that movie, “The Truman Show,” where everything is just pretend and I’m some experiment being watched to see how I’ll react to everything? Please, please, please, somebody tell me that’s the case. I don’t think it’s even hit me what is going on, why we are here, and why everybody has been crying, until now. Until I stepped outside tonight to get Woody some things from his car and in the room across from us was a baby who was on the verge of her last breath and I stood and watched while it was happening. The door was open and I could not look away. The nurses were crying, parents, family, everyone was hovering over this baby. They were preparing for her to take her last breath. In that room, I saw myself, huddled over Ronan, begging him not to go. Is that my future? Does everybody know this except me? Is this the reason that The Ryan House was full of my friends and family today, and when they all came into Ronan’s room they could not hide their tears. Am I the only one who thinks this is not going to happen?? Even though I am hearing whispers of he has days left. Who are they talking about? Couldn’t possibly be Ronan. He gave me the biggest smile today and told me he loved me to the moon and back. So what if he cannot walk anymore because his legs hurt so badly. I can fix that with Radiation, right? Just like I fixed his arm. So what if he is not wanting to eat anymore, I can fix that too with his all his favorite things like Strawberries and Whipped Cream. I can get him to eat for me. I sent Woody and Fernanda a list of people, resources, other doctors to call today. Woody has been on the phone all day. I’m not accepting this until I hear there is nothing more to do from 100 different people. I’m not giving up. I am his mom, I can fix anything. That is my job and I refuse to fail.

I have not been outside in a couple of days I think. Tonight, I found myself on the patio, curled up on the phone, bawling to my Mr. Sparkly Eyes. I don’t think I screamed, but I remember sobbing and listening to him cry with me. I told him over and over that I cannot have Ro leave me, I cannot live without him, please make it go away. He told me I could yell at him, how sorry he was, and begged me to sleep as I cannot remember the last time I really have. It’s been a couple of days I think. I told him how could I sleep, how could I possibly close my eyes, what if I missed Ronan’s last breath?? I will never forgive myself. I’m not going to miss any time that I have left with him although I forced myself to come outside and write tonight while Woody sits with Ro. You see, if I didn’t, I was on the verge of packing up all of our stuff and getting Ronan out of here. Maybe if I take him away from The Ryan House, he won’t die. My thoughts are not rational, but they seem realistic to me and I could seriously see myself grabbing him and never looking back. I don’t want him to die here. Even though everyone is insisting this is where we should be. I want to be home with him, where he is safe and none of this is real. Being here, magnifies everything by a billion. I don’t like the look of all of the sweet nurses, doctors, and whomever else has been hovering about. They all have the same look of pity, sadness, and no hope. I get the feeling they don’t see miracles happen very often with children that come in here with cancer. Why can’t Ronan be that miracle? Why is that asking too much? We are nice people, we deserve a happy ending. There will be no happy ending of this story if my baby is ripped out of my arms. What will they do with him? Where will they take him? I’m not letting him go. They will have to pry my arms off of him with a fucking bulldozer. I’m not letting him go. Call the fucking psych ward because that’s where I am going to end up if this all goes down the way everyone thinks it is going to.

“Everything happens for a reason.” BULLSHIT. “You were given this because you were strong enough to handle this.” BULLSHIT. “God has a greater plan for Ronan.” Bullshit. “Ronan wants to go home, where he belongs, to Heaven.” MOTHER FUCKING BULLSHIT. Who the fuck came up with these sayings because the next person I hear say them to me is going to get punched in the face. They may be true if death is not outcome of this. But if it is, then I am going to write down those sayings on a piece of paper and burn them to the ground. Please think before you speak those words. They are the sickest things I have ever heard. Ronan Sean Thompson does not want to go home to heaven where he belongs. I can guarantee you with my life that he wants to stay at his home, in Phoenix, Arizona with the best mommy, daddy, and brothers alive.

I somehow stayed so strong today, even with people buzzing in and out, wiping the tears from their eyes. Stacy, Pam, Heidi, Tiffany, Jennifer, Sharon, Marcia, Auntie Karen, Sister Mary, Dr. Campbell, Katie, Macy, Sarah, Fernanda, Nana, Papa Jim, Aubrey….. they were all here. I think Niki, Heidi and Christy came by too, but I cannot remember seeing them. I smiled and remember saying to New York Miss Macy, “No tears, my dear.” She looked like she could have cried a pool of water right there in front of me. I’m so confused. I must be in shock still. I don’t remember much else about today except for sitting in bed, and taking care of Ronan. I remember a few people coming in and out. I remember eating my one thing that I have eaten in a week, my favorite things, chips and salsa and I remember throwing it up. I remember holding Quinn on my lap and watching him cry as I tried to explain to him as little as possible what was going on. He tried so hard to not cry, but I told him how crying was so good for us and how we cannot keep our feelings bottled up. And now I sit here. With Quinn and Woody inside, and Fernanda is here too with her overnight back so I can have a break and maybe sleep while she watches Ronan for me. I don’t really know what is going on. I know I have the most amazing friends surrounding me but somehow I can only find the courage to see a few faces.

I want to go home but nobody seems to think that’s a good idea. I don’t know what to do as the twins and the way they remember everything is the most important to me, but I also want to respect Ronan and take him home to be the only place he wants to be. I don’t know if I want strangers surrounding him if for some crazy reason he has to leave me. I just want him in my safe bed, in my safe house, the place he loves more than anywhere. I want that not only for myself, but for him as well. I’ve been so open and honest about everything and not the least bit private, but now I want to protect him from strangers hovering about. I don’t want those faces around my baby as he takes his last breaths. I feel a jailbreak coming on. And Ronan has his pistols in his hands to bust us out. Not that we would really need them, because I know the people here are so respectful of what you want to do. But a little cowboy action never hurt anyone.

That is all for tonight as I have officially lost my mind due to lack of sleep and oh, just the little fact that my son has cancer and I am just supposed to sit back and watch him die. FUCK YOU WORLD.

But I love you all as always, as long as you don’t say any of those idiotic things I mentioned above to me. Even if you think them, please don’t say them. They don’t give me strength at all. They even piss my husband off and it takes a lot to get him pissed.

G’nite all you cowboys out there. Sweet dreams.

xoxo

My sweet friend, Charisma sent this to me from her friend, Amber. I love it. Bittersweet. I love you, CC. I love you, Amber and I don’t even know you.

Ronan. Here’s a little prayer for Ronan,  beautiful eyes. Seeing the other side. Courage beyond any man.
He will be there. In the trees. In the leaves. It will make her live life, hate life, love life beyond…
Rebirth. Always more chances.
Those eyes. Those eyes. Those eyes.
Fabulous eyes.
We will light a candle at dinner for Ronan tonight and celebrate life.
~Amber

Please don’t leave me

Please tell me today didn’t happen. Please tell me I didn’t have a conversation with my husband about what we are going to do for Ronan’s services. Please tell me I then didn’t go to Hava Java and sit with Fernanda, Stacy, Marisa, Danielle, Tricia, and Macy about planning everything. This all happened so fast. Too fast. All I want is more time with him. I am so scared now. I’m left with nothing except for waiting for my baby to go. He spent all of today in my bed, sleeping, and crying out in pain. Morphine, Morphine, and more Morphine. I couldn’t get him out of my bed so I sat with him, rubbed him, and tried to comfort him. Nothing was working and I couldn’t talk him into going outside, playing with his brothers or anything. I texted Dr. Maze and asked him if it was the Morphine that was making him so tired or was it because he is getting close to dying? I almost threw up writing out those words. He responded back it was the Morphine. I don’t think he would have told me otherwise as I know he does not want to say those words to me. I decided that I was not comfortable with Ronan being home, as his pain is not getting better. We have taken him down to the Ryan House where they can hook him up with a drip of some stronger pain medication. I’m not sure how long we will stay here, but it is such a gorgeous place, for being in the worst situation. Woody and Tricia dropped us off. I spent the evening trying to get Ro comfortable. It’s not working. Nothing is working. I have been rubbing his leg for an hour, listening to his shallow breaths, watching him twitch and whimper in his sleep. I’ve been talking to him all night, telling him I’m not going anywhere and neither is he. He is hurting so badly and all I can do is hold his hand and rub his little body. Aubrey came by tonight to sit with me and love on Ronan. He knows there is not much time left even though he refuses to tell me. I can read that man like a book and he doesn’t even have to say a word. His eyes say it all.

I’m trying to be strong for the sake of Ro. I’ve done an o.k. job but tonight, I lost it in front of him. I was whispering to him about how he cannot leave me, how he promised. How we had to fight and still be strong so we could always be together. The tears were pouring down my cheeks. He looked up and goes, “Please don’t cry. You’re making me sad.” Ugh. Wise little man. I stopped, until he then told me the the medicine he is taking is making him so sleepy that he can’t even play and that is making him sad. Unreal. All of this. I am so desperate at this point… there has to be someone out there who can help my baby. This cannot be the end. I cannot let go so soon. I need more time with him, so a cure can be found and he can be healed. I cannot lose my baby. Please God. Let him stay here with me; he is so happy with us. Our lives will be so empty without him.

I cannot get Ronan comfortable. He has tossed and turned all night, asking to go home. We had Mimi and Papa wake the twins up around 10 and bring them down here to stay with us as Ronan was begging for them. Quinn is sleeping with Ronan and myself. Liam is in the room right next door with Woody. We are keeping the twins home from school tomorrow. They need all the time with Ronan they can get. We have still not had the talk with them. I keep finding a reason not to do it. Once it is done, that means this is real and I am not ready to accept that yet. I’m not sleeping. How could I possibly sleep at a time like this? I have to watch Ronan at all times to make sure he is still here, he is still mine. His breaths seem labored and forced. His tummy is hurting and he seems confused. He told me tonight that he wants to go home, but doesn’t want to have to get back on the airplane to do so. He also told me I wasn’t saving him. If he only knew how I am trying everything I possibly can to save him.

I’m having Woody call Doctor Sholler tomorrow. Her name was thrown around quite a bit tonight when I put out a desperate post on the Neuroblastoma website. She is supposed to be one of the doctors that thinks outside the box. Woody seems to think that nothing can be done, but I refuse to believe that. Somebody out there has to be able to save my Ronan. I’m not accepting anything until I hear it from everyone I possibly can. I’m not giving up on him. I’ve got to get him more comfortable so I can buy myself some time. I cannot stand seeing him in pain.

He is awake, he is restless, so I am going to rub him and sing to him. G’nite Twinkle Twinkle Little Stars. I love you all so much.

xoxo