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

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.

I’m sorry my baby boy

 

Not a lot to report today. The day was spent with Ronan waking up bright and early in pain; therefore, he was pissed at the world. We spent the majority of the day playing in his bed and testing out what the correct dosage of morphine for him is as they decreased it last night due to his little falling asleep quickly incident. We did his second day of chemo, and third day of radiation and are still inpatient at Sloan. They are thinking we will be able to be discharged tomorrow and just do the rest of his chemo outpatient. I’m not sure how they will have us handle his pain issue though, as he is getting morphine through one of his broviac lines. We’ll discuss that tomorrow with Dr. Modak. Radiation was a little trickier today because Ronan was in the middle of sleeping when they came to take us down to the second floor. He was mad that he was woken up and crying when it was time for his radiation to start. I got him to settle down and our new friend, Con, who has been doing Ronan’s radiation since day one, started the procedure. It only took a few minutes again and soon we were back up in our room. Ronan fell asleep on our wheelchair ride up to our room and I transferred him into his bed.

While he was sleeping, I snuck out to go back to the RMH to shower, change, clean up our room, and re pack our bags. I had the chance to talk to Tricia on my walk back to Sloan. That felt good. I told her the highlight of my day was getting to shave my legs. Ahhh…. the little things now. They sure do mean a lot. Ro hadn’t napped long while I was gone and fell back asleep right before I returned. He woke up a little while ago and was in a lot of pain again. I called the nurse in and asked her to see if we could get his dose of morphine back up to what it was yesterday which was .3. The on call doctor came in to find a very unhappy boy, so she said that was fine. He is back asleep again and I am hoping he continues to sleep painlessly though the night.

I am beyond tired and am glad that tomorrow is Monday. I love having Woody here with me, but I think he needs a distraction from all that is going on. I’m so used to this hospital life; he really isn’t. Tomorrow will be good for him as he has a lot of work to catch up on. I’m kicking him out of here so he can go back to RMH to work. I will tackle Ronan and all that we have going on. I know that if I really need Woody, that he is only a few minutes away.

I am missing my friends and family back home a lot, but the time here with just the three of us has been good. It has given me some time with Woody that I have needed. We do really well in this city together. It is a special place for us; it is where he brought me for my 30th birthday and we had the best time. Lots of good memories together in this city. I know we are going to make more though all of this… once we get Ronan back on track we will take full advantage of being here and enjoying it with Ronan. We just need to get this pain under control. It’s the worst seeing him this way as I’m sure I’ve told you all a thousand times before. Just like I’ve told Ronan a thousand times since his diagnoses, how sorry I am. I found myself saying this over and over today as he cried about his little arm. I’m so sorry, Ro baby. I wish this were me and not you. I wish I could feel the pain in my arm, and not you. I feel it in my heart, every second of the day though. I am never without your pain and I wouldn’t have it any other way. I will hurt every second of the day with you until you are better.

That’s all for tonight my lovely friends. Thanks for checking in on us. Sweetest dreams.

xoxo

Jar of hearts

Tonight, I honestly sat here and could not remember what month it was. It literally took me opening up my calendar on my computer to figure it out. That is how fried my brain is. What even happened today?? I’ll have to sit back and reflect so that I can tell you. We were all tired from a rough night, so slept until around 10:30 East Coast time…. 7:30 your time. Seemed so late but it really wasn’t as we have not adjusted to the time change yet. Once Ronan was up, we spent the morning playing and I snuck out around 1 to go back to the Ronald McDonald House to shower and change clothes. I called Fernanda and had a hard time talking to her due to just having a hard couple of days. I hung up with her and ended up being hysterical so I called Auntie Karen as I really needed to hear her voice. I just could not stop crying this afternoon, no matter who I talked to. After I hung up with her, I decided that I needed to go on a run. I laced up my shoes, and headed to Central Park. I cried most of the way… WTF?? I cannot seem to hold it together when I am away from Ronan. I do well with him, but when I’m by myself, I seem to have a hard time. My run was alright, gorgeous day, but I only ran about 5 miles due to my pounding headache and lack of energy. I came back to the RMH, took the hottest shower possible, and somehow managed to throw a bag together to head back to Sloan. I ran to Starbucks before heading back to the hospital and caught a glimpse of myself in a window as I passed by it. I had to laugh out loud at the outfit I had dressed myself in. To say I looked like a cute hobo is pushing it…. I was a mess from head to toe and topped it off with my favorite bright green North Face fleece hat on top of my head. Seeing myself gave me a good chuckle which is something that I really needed at the time. I sat in Starbucks and waited for my coffee and called Tricia to check in…the conversation started by me telling her that this cannot all possibly be real, that I still don’t believe it, because no matter how wild of an imagination I have, even I couldn’t make up the crap we have been through the past few days. I ended up bawling while on the phone with her in front of a coffee shop full of people. I don’t even care anymore…. I don’t care how ridiculous I looked, the stares, the wondering on people’s faces. I love that in this city, full of so many people, that I can completely break down and it doesn’t phase me in the least. I’m not going to hide my tears here; I’m tired of hiding them back home due to being so worried about my twins seeing me or because I am so caught up in our everyday life that it numbs me. Here, I am not numb, and as painful as it is, it is therapeutic in a way as well.

I returned back to the hospital to a very happy baby boy who was sweet as pie. He was so happy to see me. Woody was in bed with him and they had been playing Star Wars. It was so adorable to come back to. Ronan was due to get his second round of radiation at 6 p.m. so I told Woody to go shower as I didn’t want to be alone for it again. He left and soon after Ronan got sick to his stomach due to the chemo. They are giving him round the clock anti-nausea meds, but that isn’t enough. I had them give him another dose of something else before we headed down to the second floor for his “pictures.” Woody arrived just in time and we headed down to get started. Once again, Ronan was a champ. I set him up on the table, and watched as they raised him up high to start his treatment. Woody and I both kissed him and said we would see him in a few minutes and we left the room. We watched him on the monitors and talked to him the entire time. I cried once again. It’s really hard for me to watch him do this. The whole thing took was super fast today and took only a few minutes. So glad for that and so thankful he is not needing sleepy meds to do this. It makes it so much easier.

After radiation, we came back to the room and Woody ran out to get pizza from Ro’s favorite place and soup for me. Ronan didn’t eat much due to still being a little sick to his stomach but I did get him to eat a few noodles. We had a little bit of a scare while we were sitting in our room. Ronan was on my lap, shooting his pistol gun, and I looked down and he had completely stopped what he was doing and he was out like a light. I tried for about 30 seconds to wake him up, but he was out cold. I flipped out, told Woody he had passed out and to call the nurse which he did. I got him to wake up and within seconds we had a few doctors and nurses in our room checking his blood pressure and heart rate; all which were fine. I’m not sure what happened.. I don’t think he passed out as in fainted, but passed out as in from exhaustion. I think it was a combo of not napping today, chemo, radiation, morphine and anti-nausea meds that hit him all at once. It scared me to say the least. He ended up being fine and woke up and played for the next hour. I asked the doctor to reduce the amount of morphine they are giving him as I think it is making him a little loopy. They decreased it and he seems to be sleeping peacefully.

Woody is out like a light as well. He is beyond beat and is having a hard time too. It’s hard for me to see him this way, as I am so used to him playing the strong, lawyer, perfect husband and daddy role. Tonight he told me he is scared, which I of course already knew, but hearing him say those words is really hard on me. I’m trying my best to keep my ass kicking attitude going here, but it is hard when I know Ronan is in so much pain. This radiation just has to work on his arm so he can go back to the kid with cancer, who doesn’t feel a thing. I want my “healthy” boy back so badly.

I talked to Quinn and Liam tonight to tell them goodnight. I miss them every second of the day. We all do. I talked to them in my strongest voice and told them how much I love them and missed them. They sounded happy which gives me peace. Thank you Mimi and Papa for taking such good care of them. Thank you Lindsey for the text you just sent me with a picture of the full moon tonight saying you love me to the moon and back. After you sent me that text, I got up out of bed just so I could go and look out the window at the same moon as you. I love you to the moon and back too.

Time to get some rest here. Kisses and love to you all. Hope you are having a beautiful weekend. Thanks for checking in on us.

xoxo

Us right after radiation. That’s my boy:)