I’m having a white party tomorrow. Do you think P Diddy would want to come?

Ronan. Do you know how I feel tonight? Hollow. Empty. I swear, it’s just one thing after another. I just had a Mother’s Day that no mother would ever want. All after your death day, your birthday/the day you were cremated (on your fucking birthday), Mother’s Day, and now tomorrow, is the day we had your fucking services, last year. May is a sick fucking joke. Next year, I am going to Iceland for May and living in a fucking igloo and ignoring May, all together. I came home from our trip, numb. I am totally numb again. How can I not be? I’m numb without the help of any anti-depressants. The one’s that everyone wanted to numb me with and still want to numb me with. I’m still here screaming that I don’t want to be numb. I will feel this, the way I am supposed to feel this and not by taking medications to help me not feel this. I want to feel this. I deserve to feel this pain. I am strong enough to handle it, no matter how much it hurts. I think my body is having a natural numbness physical reaction, all on it’s own. Because these dates, right after another, are just too much.

Mother’s Day was banned. Well, at least it was in my head. I let Liam and Quinn still think it was happening, because I don’t want to ruin everything for them. I took Mother’s Day and turned it into a day, all about them. I had a Liam and Quinn day and didn’t make a peep. I don’t think I even cried. See, I told you I was numb. We went to a Red Sox game, which they LOVED. We went and had a BBQ dinner at our friends’ house and they loved that just as much. We let our 4 kids run around and play with each other, but it still should have been 6. We sat with our friends into the night, talking normal talk and cancer talk. That’s the way it will always be. But it was easier with these friends, to be around them on Mother’s Day. I took comfort in all of our sadness on this “Happy Day,” of the year. I sat and thought a lot about your Fairy RoMo. I texted her it was indeed not Mother’s Day but Fairy RoMo day instead! I told her how you would have went craaaaazy over her Goldilocks hair and I know she would have loved you like her own. I am changing Mother’s Day to Fairy RoMo day. Because the love/kindness/support/and heart of your Fairy RoMo should be celebrated on this day. So it was, for her. I let my thoughts soften a bit while thinking about all the beauty that just exudes out of her, all the time. Like there is just sparkly glitter falling from the sky, when she is near. That’s how I feel anyway. It makes me feel peaceful, happy and inspired. There is that lucky world again, Ro. I am so lucky, to have her in our lives. Thanks for bringing us to each other. Another one of your little gifts, I know.

We made it home now and all I want to is run screaming back to Maine. Preferably Cape Elizabeth where I totally left my broken heart. I could see my broken heart mending there, quite well. You know what I felt while we were there, besides sad? Peaceful, calm, quiet, relaxed… I felt the pieces of me, that I miss so much. Your brothers felt it too. For such an awful reason to go away, Ro baby, it was the best place we could have possibly went. Maine and Cape Cod. Your brothers were so in their element there. They were so happy and carefree. They were so sweet and we spent so much time, outdoors playing in the beach, on rocks, on logs, in the water, in the woods, getting lost with each other and slipping into their childhood that they should know. The only childhood they should know where their baby brother, does not get cancer and die. It should have been the 5 of us there, Ronan. My heart is ripped to shreds that it is not and never will be again. But your brothers, they are happy. I guess that means your daddy and I are doing a good job, despite all of this. I don’t know how, but we just keep skipping along, not missing a beat because now, only their happiness is what matters to me. Mine can wait. I can put mine on hold, forever. Liam and Quinn will not be robbed of anymore happiness. They are too good of boys to have anymore hurt come a long. So, Ro… I still cry in front of them. But not as often. I laugh more with them and hide all the guilt that washes over me when I do. Guilt that they do not need to see or hear about. Adult guilt that I hope they never have to know about, in this way. Your dead child guilt where everything you do feels wrong… even telling another little boy at a hospital how brave he is while you are in visiting him. FUCK. Did I really just tell him he was brave. OH MY GOD. I only used to tell Ronan that. I just betrayed, Ronan. Fuck. I have to leave. I do. Tears pouring. Ronan. I’m sorry. You were the bravest little boy, I’ve ever known. I’m sorry if that hurt your feelings. I tell you thinks like this all the time because the guilt never goes away. It’s heavy to carry but that’s just the way it is. Once your child dies, you don’t stop taking care of them. It just continues on in a different form. I still have 3 kids to take care of. Why else would I be doing your Foundation, Ro? My number one reason is it is my way of still being your mom, still taking care of you, and still doing a really good job at it. A job that is going to be done, so well due to how much I love you and you love me. This is why your foundation will change things. Because our love is powerful enough to do so and because I promised to fight for these kids and families until things start to get better. Like a freaking CURE for Neuroblastoma. Let’s start with that. That is what we are going to do with our passion, drive, energy and love. We are going to help these doctors but we are also going to help these families. No family should feel so alone in this, the way we did. It was wrong, wrong, wrong. I have a big list of things that need to be fixed. I’ve been working on that list with Dr. JoRo. We will get to each and every thing, one by one so that maybe a family will not just feel like another number. They deserve so much more than that.

Tomorrow is May 15th. The day we had your services last year and I remember NOTHING about it. I think I smiled a lot. I think I did the “Thank you for coming.” I think I thought I was floating on air and I probably was. I wore white. Everyone did. So for tomorrow, it only makes sense to wear all white again. I’ll do this, on this day, every year for the rest of my life. I’m having my own White Party and P Diddy is not invited. Unless he wants to donate a fuckton of money to Ronan so we can start to put our master plan into place. The master plan starts soon. I’m running with it because I have to. Because it is a good idea. Because it is so needed. So, P Diddy, you can come to my White Party tomorrow but be prepared to bring your big fat checkbook. I only need about 10 million dollars. My White Party might suck compared to the fancy one’s you throw every year. With all your fancy people, cars, clothes, etc…. My white party is just going to be me and my son’s Urn. We might have a dance party together. He loved to have dance parties. My party will probably involve tears, but they will be the saddest tears you’ve ever seen for the most beautiful little boy who ever lived. They don’t all have to be sad, they could be happy ones too because I think you might come to the conclusion that my White Party kicks the shit out of yours just for the cause alone. You know, just trying to save some kids’ lives. Cancer Kids who live right here, in the U.S.A. We’ve got a lot of problems of our own, right here. I wish you celeb types would stop and look around here. You could help save so many of these babies who don’t even know how to fight, but they are the strongest fighters I’ve ever seen in my life. They are the true heroes, warriors, fighters. They deserve to have a strong voice to start stepping up and helping them. They deserve to have a chance at growing up. I don’t want anymore families to go through what we have gone through. What we have lost which is everything. Ronan was EVERYTHING to our entire family, not just me. He was everything to Woody, Liam and Quinn. I don’t want what happened to us, to happen to anyone else which is why people like P Diddy need to start helping. People listen to celebs.They need to start focusing on Childhood Cancer. It is worth fighting for with everything you have. Because what if it were your child? Wouldn’t you want to know, the best of everything was out there and the survival rates had improved?? Of course you would but this takes work, money, research, education, and dedication. All of those things seem so easily accessible when you look at these kids whom you are fighting for. Each and every one of them, are worth it and they need to stop being overlooked.

Yeah. That would be my rant and rave for the night. (shout out to AMBIEN) which I have not taken in weeks, but tonight, coming home to your empty bed about threw me over the edge. I needed a night to peace out. So, tomorrow is an all white day for me. That’s what I’m doing. I also might just take Ro’s Urn out with me everywhere I go. I’m kinda serious about that. I do need to invest in that baby Bjorn. Grocery store, here we come!!!

G’nite Ro baby. I miss you. I love you. I hope you are safe. I’ve come to the conclusion that you were just too perfect and beautiful for this world, so you are someplace so much better… just waiting for me. I’ll see you when it’s my time. I love you, little man.

xoxo

The start of many firsts without you. A.K.A. Fucking firsts. Thanks, S:)

Ronan. I’m tired tonight. I have not been sleeping well and I know it is because I am missing you so much. I don’t really know what it feels like to be depressed, but I think that’s what I’m feeling lately. I’m still going out, doing things, but my heart is so heavy that I sometimes feel like it is just gone. I don’t even feel like my heart lives inside of me anymore. It’s too heavy to carry around and I feel like when you left, you took my heart with you. I’m so sad. My tears are endless. My hurt is unbearable. I miss you every second of the day. Life is so strange without you here. We all feel it and we don’t know what to do with it.

Today, I took your little surfing brothers to camp. They both did really well but it was a cold day for them out there. I let them pack up a little early as they were excited to play with Laura and Kasey who came to see us today with Cameron and Chase. They arrived just in time to watch your brothers catch some waves. We spent the entire day and night with them. It is always so comforting to me to be with them as you know how much they mean to our family. It was a little hard today though too. Mainly because of all the time we spent with them with you. You and Cameron are so close and age and when the two of you were together, I used to dream of you growing up, being best friends, maybe dating :), but being together forever. Childhood friends for the rest of your life the way I grew up with Laura and pretty much Kasey too. I met Laura in the 8th grade. We became best friends. She met Kasey when she was 15 and they started dating. My two favorite high school sweethearts and our families blend so well together. Watching your daddy and Kasey together…. well, to me there is almost nothing better. Being with Laura, with all of you crazy kids, running about has always been one of my favorite things  about life.  To know that now that will never happen again with you, makes me so sad.

Tonight, Laura and I were sitting by the pool watching Cameron and Quinn play. Two summers ago, that was you…. “Baby Danger,” jumping off of the edge of the pool, scaring Laura to death all while I sat back and watched you and laughed. To sit tonight and watch Quinn swim quietly with Cameron, was so hard. I sat and cried and Laura just rubbed my back. I told her I just miss you and she asked if the days ever get easier. I told her no. So far, they have not. I told Mr. Sparky Eyes tonight that I don’t think time heals all wounds, if anything they just become deeper. I will be scarred for life after losing you. But I’ve got to figure out how to wear these scars with pride and dignity because that’s how you would have wanted it. I’m trying not to push myself too much as I need to let the dust settle because you left me such a short time ago. I want you back so badly, that I would trade having just one more day with you, for my life. Ronan. I miss you so much. I don’t know what else to write tonight as I am just too sad. I got a very sweet “Dear Ronan,” letter from Melissa that I am going to share with you. It is beautiful, just like she is. Thanks, M. You are so true and genuine which is why I love you so.

Dear Ronan,
I keep thinking back to Saturday, May 7th, two days before you died.  You were lying in bed, your legs were emaciated and your mamma kept rubbing them.  Ro, you were in so much pain. I thought your mamma’s hands would fall off, she never stopped rubbing your legs and little upper thighs. I laid for so long on that bed with your mamma and rubbed her back because I wanted to help her so much.  I offered to take over and rub your legs but you would only allow her to help you. She never stopped.  Your mamma went so long without eating or sleeping that last week you were alive that it was amazing she could function.  I kept buying her coconut water.  I think that was the extent of her nutrition.
I am 42,000 feet high in the sky tonight heading to Rhode Island.  
I am flying on ” A Big Jet Plane ”  Ronan, and I feel a little sad.  I am thinking about the amazing summer Dante and Alessia will experience and how you won’t live a life.  You had such a short time on earth. You were robbed of time.  As my Dante says, ” Ronan was dealt a shitty deck of cards, ” a little inappropriate for an eight year old to say but it is the truth. Your parents raced against the clock.  Time always wins Ronan, time is so unfair. Time has no respect for age, love, or hope. 
I do believe every one of us is on earth for a purpose.  I do believe your purpose is to be the beautiful poster child for awareness and funding for neuroblastoma. A horrific purpose for a family.
Do you want to talk about ignorance?  When your mamma told me you were diagnosed I had to go home and goggle it.  I placed a P where the B is located in that awful word. In August your mamma told me you had cancer, a perfect stranger at that time, and I decided I would be friends with Maya Thompson. Why not?
I brought her a coffee one day and realized immediately that I got so much more out of the visit then I ever thought possible and loved her personality and determination.  Remember how you would throw me out of your hospital room at times when I would visit?  You were so feisty!  I hated leaving your mamma but she did not mind because you were happy.
I was having horrific nightmares after you died.  It all started the day your mamma showed me your ashes while in your home one afternoon.  I told her they scared me and could not believe they were in the kitchen.  The worst nightmare was about your mamma and I in Frys Supermarket.  She was running around screaming, “where is Ronan ?” We looked and looked but we could not find you anywhere and there was a clock on the wall showing us we were out of time to find you.  I then ran all the way to the ocean and when I got to the shore I found a body floating dead in the water and it was Alessia.  I would then awake and my heart would be racing and pounding. 
The dream must have derived from your mamma’s horrific and tear jerking blog, “Where’s Ronan ?”  I read that blog too many times.  I couldn’t help it because I could not believe I watched you drink a coke on Saturday and demand those Star Wars guys be placed in good and bad categories on your bed, then visited Sunday night and then you were gone forever…………
Well, I no longer have that nightmare thank goodness.  I think it is because I finally realized where you are, right in your mammas heart and soul. 
I’m sorry the prayers did not work, I am sorry that time won and I am sorry that your parents had to go through hell to make others realize all the good in their lives.  So many people are better for knowing your sad story.
I am so lucky that Dante, Alessia, Liam and Quinn all go to school together.  We are all going to be friends forever.  We were at your house the day they left for California. I was so happy to see the boys excitement about the trip. I promised your mom she would never be “one of those moms.”   You know, the useless ones that talk a lot but never make a difference.  Mamma and I are going to keep drinking our extra hot vanilla lattes and do a whole bunch of good work.  Your mom has a team.  I have never seen one person have so many amazing friends.  I have always thought it was a blessing to have a few close friends…but not your mom…she has multiple teams of friends.  Maya Thompson reminds me of a tornado, a good one. 
I can’t wait to see what she does once she is a feeling a little bit better.
By the way, my phone still twerps like a bird.  I loved how it would make you giggle.  Your adorable giggle will remain in my heart forever.  
Thank you Ronan.  Thank you for all your life lessons and making me a better person. 
Love,
Melissa 
I’m going to end this post tonight now. I am going to try to get to sleep at a decent hour as I can feel my body shutting down due to the lack of sleep and overdoing things. Ronan. I love you to the moon and back baby. I hope you are safe. Please don’t go too far away from me. I still worry about you so much. G’nite my sweet boy.

Thank you Lulu Lemon girl

Ronan. Everyday without you is stranger and stranger. I am trying to keep super busy, but I am really just existing. Somebody asked me how I was today. I said I was existing so that was better than nothing. I’ve stopped saying I’m fine because I’m not. And I know you know I’m not and you are o.k. with that. Maybe someday I will be o.k.; but as of now , everything is a freaking nightmare. I keep thinking I forgot you at the grocery store or something. I remember feeling this way when you were alive, and if I had dropped you off at school for a few hours. I would go about running my errands and panic because I thought I had left you somewhere when you were really just at preschool. That is how little I was used to be without you. I would give anything to have just left you somewhere now; as awful as that would have been. In the grand scheme of things it would be a whole lot better than this.

Today, I took Liam and Quinn to school. Late. They have been tired lately. Staying up a little too late with us. As of now, Quinn is in my bed with me and is just now falling asleep. He is stuck to me like glue. I don’t blame him…. the poor little guy didn’t want to go to school today. I had a talk with him and told him I would talk to his teacher and if he wanted he could come home later. I think the distraction of school is good for your brothers minds right now. I know I am going to have to get them some counseling. I am meeting with someone Thursday morning to see if she will be the right fit for our family. I cannot tackle this alone. I need some help with my two little guys. As strong as we are as a family, this is all too much for your daddy and I to fully handle. An outside source will be something we will embrace for as long as we need to with your brothers. They need someone else to talk to besides us and someone who has experience in helping out with things like this.

After I dropped of your brother I ran some more “let’s keep you totally busy,” errands. I ran over to The Biltmore to return some running shorts that your daddy had gotten me for mother’s day as they were too big. As soon as I walked in, I was greeted by a bubbly blond girl. She didn’t give me the standard greeting but instead goes, “Heeeeey girl!” I just smiled and said hello. I went about my business and got the things I needed. She met me at the cash register. She asked me what I was out doing and I just quietly told her I was running errands. She then goes, “Oh, getting shit done?” OMG. Who is this girl and how can I be her friend? She totally cracked me up today when nothing is making me laugh. I thought to myself, is this really happening? Did the LuLu Lemon girl really just tell me I was getting shit done?? She did and made my day. As she handed me my receipt, I grabbed one of you F U Cancer bracelets out of my purse and gave it to her. I told her to look you up. She was totally worthy of one of your bracelets. If only more people in the world could be so candid and real. I LOVE REAL PEOPLE. So thanks, LuLu Lemon girl. You made a very sad girl, giggle on the inside the entire day today. It felt nice.

I did a really good job of keeping myself busy. I was only home alone for about 30 minutes and it wasn’t bad. My friend, Melissa dropped by and I had her drive me up to Echo Canyon so I could get in a hike. What is this weather, Ronan Baby? I know you are responsible for it because never in all the time that I have lived here, have I experienced a May quite like this. It has been so gorgeous and almost cool. I hiked as fast and hard as I could today. When I got to the last part, I was starting to get tired. The wind literally picked up and I felt like it was pushing me up the rest of the way. I know it was you. I sat at the top for a long time and enjoyed the sun. It was almost the perfect day except you aren’t here. I guess I’d better get used to those almost perfect days as I know I will have them for the rest of my life. I ran back down the hill to our house. I looked for you in our front window and so expected you to be waiting for me right at the front door like you always used to do when I would hike. You were always so anxious for me to get back to you. It was like a slap in the face today when I returned and you were not here. I slap in the face that I will never get used to and I will never accept. Because all of this is fucking unacceptable.

Tonight, we went out to Tarbell’s for Uncle Jay’s birthday dinner. We went with Jay, Charlene, Lindsey and Mark. It felt weird to be out, but all of those people are family so it was comfortable. It was important to us to celebrate your Uncle Jay as he has been such a good friend to us for so many years. It was a quiet dinner and the food was as usual, nothing but amazing. I ate a bit for you and even had some of the amazing deserts that Mark sent out for us. It was a nice night but we kind of had to hurry home due to Quinny waiting for us. We were on the clock and he called me twice to see where we were. My heartstrings tugged for him, so we ate our dinner, went back to Uncle Jay’s for about 15 minutes and sat outside. We then went home and now here we are. All snug as bugs in a rug. Tired. But restless. I am so very restless all day everyday. I’ve got to find something productive to do with all of this energy. I know you will help me figure it out. Mr. Sparkly Eyes told me he thinks I need to just take a couple of months to regroup and not do anything. I told him, I knew he was going to say that, but I don’t know if that is something I can do. I have done nothing for the past 8 months, 24 hours a day, 7 days a week, but fight for you. And now what? All is expected to be peaceful and calm? When I have  gotten so used to is going, going, going, fighting, fighting, fighting. I know he is probably right, but I don’t know if I am capable of this calmness that he wants me to embrace. I explained to him that I feel like a brand new mom, with my first born baby. Stumbling, lost, scared, worried, with a ton of adrenaline. Except now I am a brand new mom, to a dead child. How the fuck do you figure out what to do with that? Not a clue. I’m just doing the best I can which is not hiding in bed all day and taking care of my twins. As of now, that is all I can handle.

That is all for tonight my sweet baby boy and lovely peeps. Ambien induced sleep coming my way as that is the ONLY way I sleep now. Love you all to the moon and back.

xoxo

This is the tattoo I got in New York. I had “This too shall pass,” with one baby star. The other night, I had 2 more baby stars added for Liam and Quinn. So now I have all my boys with me all the time. 🙂 The stars are in purple. Club tattoo did a great job:)

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



FUCK YOU MOTHER FUCKING CANCER

Text to Mr. Sparkly Eyes tonight: “I don’t know much about life; although I pretend like I do. I know almost nothing about death…. but I am about to learn about it in a very hard way. I don’t think R is going to be around much longer.” I often find myself thinking my truest thoughts and sharing them with him. Those were my thoughts tonight. I don’t like my thoughts, but they cannot be ignored. I wish I could tell you all that Ronan had the best day ever. But that would be a lie. I wish I could tell you I didn’t have to hold my husband as we cried about our son together. But that would be a lie too. I wish I didn’t have to tell you a lot of things about today. But I’m going to anyway.

Auntie Karen picked us up for the clinic at PCH. I saw Dr. Adams as soon as we walked through the doors and gave her a quick hug and kiss on the cheek. The look in that woman’s eyes say so much. She knows it all, and I can read her without her having to say a word. I didn’t like what I saw today; but her eyes cannot lie and I could tell she knows what is about to come.

At the clinic, Ronan’s labs were drawn and we were waited on hand and foot by our sweet nurse, Patty the entire day. I did end up sneaking out for about an hour to go to my twins’ Mother’s Day Tea. Bethany met me a the clinic to sit with me and ended up driving me to the boys’ school as there is no way I am capable of driving these days due to my lack of concentration. I cannot tell you how hard it was for me to be there today as all I could focus on was the thought of being away from Ronan and the reality that I had to go back to. My twins were so happy to have me there so it made it all worth it. I would walk through fire for them. I left there with my nerves shot but my dear friend, Melissa, said I put on a great show. She drove me back to PCH as soon as I walked in and saw the look on Woody’s face, I knew something was wrong.

All of Ronan’s levels were out of whack and his platelets and blood were low as well. He was transfused, and Dr. Eshun came in to tell us that Ronan’s liver enzymes were also high, which could mean that his liver is failing. If this is the case, Ronan will not be eligible for the trial over in San Diego. As of now, we cannot do anything except sit and wait to have his labs redrawn on Monday, to see if maybe it was a fluke and his liver was just off due to Ronan being dehydrated and pumped full of nothing but medicine. I am trying my best to get him to drink for me and we pumped him full of fluids today.

After Woody and I found out that Ronan may not be eligible for the trial anymore we went into one of the rooms in the clinic and both sat and just stared at each other. I remember blurting out things like, “How could his happen to him, to us, what did we do wrong, he is so perfect…. why him???” I remember Woody saying something crazy like he should not have been a lawyer, he should have been a doctor so he could fix Ronan. We cried and tried to put together another “plan.” I feel like Woody is almost more knowledgable than most doctors about this disease. He emailed Dr. Eshun about some phase 1 study that he had heard about and asked if he would do it at PCH for us if San Diego falls through. Woody left shortly after he sent the email and I went back into the room where Auntie Karen was waiting to sit with Ronan. I sat on the floor and rubbed his little legs and cried. I emailed Dr. Eshun and begged him to please help us as he has no idea how much we love our little boy and we cannot lose him. He came to see me shortly after and said of course he would help us if he could. He will do the study that Woody recommended if that is what we wish. We are desperate at this point.

We had a long day at the clinic and I vaguely remember Marisa and Danielle coming by. They sat in the waiting area most of the time due to Ronan kicking them out of the room we were in. It was comforting to me to just have them there to give me a hug. Best girls ever. We then returned to The Ryan House. Ronan was pretty tired from his long day out, as was I.

~ It’s now morning. Didn’t get to finish this last night due to being so tired and just wanting to hold Ronan. It’s early, and he just woke up and asked me for some milk. His wish is my command. Little bug.

Last night, after our long day, I was feeling in desperate need to talk to my therapist. I knew I couldn’t leave Ronan and make the drive out to her office though as it’s in North Scottsdale and I just didn’t feel comfortable with being so far away from Ronan. I asked if she could come her and see me. Without any hesitation, she said she would come after her last appointment. I could not have been more thankful. We sat at The Ryan House for almost 2 hours for my “session,” which just felt more like talking to a really insightful friend. I cried a little bit, but told her how numb and in shock I am…. how I don’t really feel anything yet. She said as of now, I couldn’t be any other way. I’m in survival mode, full force. I told her my fears about how alone I’m going to feel without Ronan. How I had always felt a little lost my entire life until he came along. He tied our family together so perfectly. I told her how I don’t know what I’m going to do without him if he does have to leave. I am going to feel so lost without him to look after. That child is my whole world. And I am so, so, scared to be without him as he is my other half. Sarah talked a lot about something surrounding me….. she called it peace at first but we then decided that wasn’t the right word. I’m still not sure what it is, but I feel it too. It helped talking to her last night and she gave me the best advice as far as what the fuck I am supposed to do next. We decided I can only take things hour by hour now. And if I don’t know what else to do, don’t do anything. That’s the best I’m going to do at this point.

After she left, I went into full on panic mode. Ronan does not look well. Woody and I have some hard decisions to make as far as where we want Ronan to be. I have said it before, but all I want is Ronan home where he wants to be. This baby has lived the last 8 months inside hospitals. All he wants is to be home and it is making me sick to my stomach that I cannot give him at least that. As beautiful as this place is here, he thinks it is a hospital and it is breaking my heart. He deserves to be home and if we can make it happen, we are going to. Woody said he felt silly for asking me this last night, but he wanted to know what I wanted for Mother’s Day. I told him nothing, but actually I know what I want more than anything. I just want to take Ronan home. If we don’t get to have him much longer, all I want is for him to be at the place he loves more than anywhere else in the world. If only it were that simple.

Gotta go loves. Ro is up. Have a good day.

xoxo

Burn baby, burn

Home. That’s where we are heading. No more hospitals, no more clinics, no more. As I sit here holding Ro on our flight home, all I can think about is, “Will this be his last airplane ride?” It can’t be possible. He was supposed to be coming with us, to Ireland soon. He was supposed to be going to Washington with us this summer. He was supposed to go on my most favorite family vacation to the San Juan Islands on the big boat that Papa Jim will drive. We were waiting until he was 4 to take him on this trip. This is the sickest, cruelest joke in the world. When did life become so hard? That’s the scariest thing; because everything changed overnight. I had no idea how precious life really was until all of this. I’ll say this over and over; I will always wish this was me and not him. I’ve done enough in my life to be fulfilled. He will never get the chance.

So after all of this, I’m sorry to say that if my baby boy goes, there is not a God. God would not do this to a child, a family, to a mother. God can fuck off. I’ve put all my faith out there I only to have it ripped away from me. If “God” takes away my child, I’m going to go burn down a mother fucking church. I’m going to go crazy and I have every right to. The pain that is in my heart will NEVER be healed. For those of you who want to judge me, think less of me for writing these words, or to wonder how I could say such things…. You are not allowed. You have not walked in my shoes, even if you think you have in some sort if way; you have not because you were never a mom to Ronan.

I am about to go home, to the only place Ronan wants to be. I am about to have the toughest conversation in my life with my twin boys. Ronan is their best friend and I am about to tell them the thing that they have feared the most. I’ve stopped eating as I have no appetite. It’s been 4 days now and the thought of food makes me sick to my stomach. I ate some cheese and crackers today only to get Woody off my back. Fuck all if this.

You don’t need to worry about my sanity, as it is gone. But as a mom I know it us my job to put on a very good show as to not traumatize my twins. I would never let them see this insane pain I am feeling. I love them too much. I know I will get through this, but now, sitting on this plane ride I am beyond angry. My emotions change from circumstance to circumstance. The moment I step off this flight, I will put back on my positivity shoes that seem to come off every now and again.

I want Ronan back. I want his hair, I want his healthy body, I want his laugh and bright eyes. I want his naughty trouble making soul that always reminded me of me. He is my little clone on the inside. The two of us never skipped a beat. You know who this is going to be the hardest on? My Quinn. Ronan and Quinn are closer that Quinn is to his twin brother, Liam. How us that even possible? Twins are supposed to have this crazy connection, which my two do; but it is nothing like the connection Ro and Quinn have.

There will come a time after all of this that I am going to go crazy, mark my words. It may take me jumping out if a fucking airplane, visiting some crazy country, running another marathon, but something is going to have to give. I’m not living a life full of limitations anymore and I’m not saying no to things that come my way. I’ve just walked through hell and back and I’m done with all the superficial bullshit that life has to offer. I will spend the rest of my life, helping others, not because it is good for my ego; but because I’m going to make a difference in this world and change the way people’s warped minds think. I will put every ounce into making sure my twins turn out to be just like their Dad; as there us not a better man in the world. I will make sure they know the meaning if living a life by their rules, as long as they don’t hurt others. I will guide them, love them, and we will never forget out Ronan who has forever changed our lives. They will be raised to have an impact in this world in honor of their brother. The most amazing little soul who has ever existed on this planet.

They will be taught to never judge people, as judgment is my least favorite quality in a person. Nobody has the right. They will grow up open-minded, respectful, fearless, honest, and I will support them, guide them, and love them with every bone in my body. I know that I am going to have to work extra hard to fulfill the love that they have missing from Ro. I am more than prepared to take on that task as these 8 months away from them have been horrific. This has been so unfair to them.

We made it home safe and sound. My little busy bees had everything perfect. I told Fernanda and Bethany I needed all new bedding for Ronan in my bed. All white, all calm, all peaceful, all new. He has been so sick in my bed for all this time; he deserves to now be surrounded by nothing but the softest sheets, pillows, blankets, white everything like a fluffy cloud. I asked for Fernanda to make me dinner so I wouldn’t have to worry about it. Done. I begged NY Miss Macy to get on a flight asap to spend the weekend with us. Done. Time is not on our side and nobody knows how much time we have left with Ronan. Anything I have asked of my friends, has been done and more and I will never be able to thank them enough. I hope they know how the only reason I am still standing is because of them. I would be so lost without them. Thank you my angels. You all know who you are.

We were met at the airport by somebody from Hospice whom I chose to ignore. So rude of me I know, but I am so numb and so in denial that I couldn’t do anything else. She came over to our house and I let Woody deal with her. I unpacked some of our things and just pretended like she wasn’t here. Woody asked if I wanted them here for the weekend. I told him no way and to make them leave a.s.a.p. My manners were nowhere in sight today and for that I apologize as I know at some point we are going to need them. But not yesterday, not this weekend. All I want is one normal weekend where I can pretend like this isn’t real. Which is why we didn’t have any talk with Liam and Quinn yet. Just one weekend is all I’m asking for where we can pretend like we are a normal, happy, family. Liam and Quinn deserve as much normal time at home with Ronan without having to know too much.

Auntie Karen and Liz came over to unpack for me. Heidi and Luke came by so Ronan could play with him as he has been begging to see Luke for days now. I sat and watched as the sweetest little 10-year-old boy cry over his worry for Ronan. I just told him I loved him and all that mattered was that Ronan was so happy to be home and so happy to be with Luke and his brothers. My dear, sweet friend, Aubrey (Dr. Maze) came by to give us his support. It was hard for me to look at him tonight as I had so much to say but nothing was appropriate with all the kiddos around. He sat and watched me buzz around, taking care of Ro, getting food for the kiddos, he watched the complete chaos of my life which I so love. I was so happy to have him here. He is a part of our family now. He loves Ro so much. After he left, I put Ronan in my bed and took the hottest bath alive.

Ronan and I fell asleep shortly after my bath. All cuddled up in our cloud of a bed. Thank you again girls. It was the most peaceful night of sleep that I have had in a very long time. We are up early… 5 a.m. Not sure why but Ronan was demanding that we get up. Whatever that boy wants, that boy gets. He’s watching “Mickey Mouse,” while I finish this post. We are going to the twins’ baseball game today and Woody is helping coach. Tricia and Macy are picking up Ronan and myself as I’m not sure if I can drive. Today we are going to be as normal as we can and normal now consists of giving Ronan morphine around the clock to keep him out of pain. My mom gets in today. Don’t know how I’m going to look her in the eyes. I’m so mad at everything and everyone about this. I’m not ready to let him go so soon. I pray that he stays with us as long as possible. I want to see my baby turn 4 on May 12. I want him here for Woody’s birthday on May 24th, for Tricia’s on May 25th, for Mother’s Day, whenever that is. I don’t want to spend this Mother’s Day without him. Please. Somebody listen. I have been on my knees, begging so much that they are bloody.