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.

Hellllllooooo Philly!

I’m not scared yet. Is that weird? Because at this point I should be scared shitless. And I don’t need to point out the obvious for you all to know what it is I should be scared about. Maybe it’s because I’m too numb, still in too much shock, or in deep denial. But I honestly don’t think those are the reasons for my being fearless. I still have this insane feeling in my heart that Ro is going to be fine. Maybe every parent whose child is diagnosed with cancer feels this way. It’s survival mode perhaps? Whatever it is, I’m not going to question it and I am going to embrace it as much as I can. I’ve questioned so many things today. Why Ronan was chosen for this journey in the first place, but most of all why he has to fight so hard through it. He is fighting like I’ve never seen a person fight before in my life. I know this is a big part of why I can’t give up yet. As long as Ro is fighting, I will not stop fighting for him. How could I? Any parent put in this same situation would do the same thing 100% guaranteed. To give up now would be so cowardly. I have never been a coward in my life and I am not about to start.

Today was one of the most beautiful days I’ve ever had in my life. Fernanda picked Ronan and I up to go to the clinic at PCH. I cannot tell you how good it felt to be back there. Dr. Maze came to see us while we were waiting and I got to watch my friend and see the pain in his eyes. He puts on a very bad poker face even though he tried his best to give me his famous smile and everything is going to be o.k. look. He left after a few minutes and looked at me and told me he was sorry. I just sat and gave him a smile as that is all I could do. After he left, I sat and thought for a few minutes. I have no shame when it comes to telling him the things that come rambling out of my head so I sent him a short text that just said something like, “Please don’t tell me you’re sorry. I cannot have you give up on Ronan too.” He then replied that he would NEVER give up on Ronan and that is not what he meant. He just meant he was sorry that Ronan is in pain as it breaks his heart. I felt better after that as that man has been with us through this from day one. I know he will not give up on Ronan because he gets it. He knows Ro is different no matter how hard this is getting and he knows my child has the spirit of something that is unlike anything on this earth. Dr. Maze is not going anywhere and more mother fucking doctors should strive to be more like that man. Enough with the egos and the ” I am GOD” attitudes. Enough of this cowardly bullshit. Not naming any names, of course. That would be much too easy. Dr. Maze also knows Dr. Mosse and took the time to send her an email in regards to us. He thinks the world of her which is so very comforting to me. He is very good judge of character and the fact that he respects this woman so much, means everything to me.

We were soon called back to the clinic room where we sat for a while and Dr. Eshun, Ronan’s primary doctor at PCH, came in to see us. Another prime example of an amazing doctor who is full of compassion and heart. We sat and talked and the things we talked about were not easy; but not once did he break eye contact with me. That is HUGE in my book. It is a sign of respect and just pure hearted goodness. I asked him hard questions and he answered as honestly as he could. He gave me his warmest smile even though I knew he was sad. That mans smile could melt a room. I thanked him for being so kind to us and told him how much it meant to me that he had the courage to talk with me the way he did. He supports our decision and understands where as parents, we are coming from. I’ll bet he is the most amazing father. I can tell that about him. He takes all of this personally and has tried to guide us as best he could. We will always be thankful for that.

While Dr. Eshun was in the room, our social worker Marcia came to see us as well. She has been so supportive of us from day one as well. I’ve always known she was a special lady but today, she kind of blew me away. She was so hopeful and so supportive of what we are about to take on. She told me what a good mom I am and how proud she is of me. It felt really good to hear from her as I respect her so much. Her eyes were filled with so much light and love today and I know she believes. She believes in miracles and she believes in Ronan. She believes in our love as a family and believes he can do this. She is still standing by our side and is not going anywhere either. I am so thankful for this.

The next person I saw was, “A.” This was probably the hardest person that I had to face. I’m not sure why…. actually I am. It is because I am completely in love with that woman and I wanted nothing more but to come back to her with the most amazing news…. I did not want to come back to her this way. She sat with me, hugged me and held my hand for a long time. We talked about really tough things. Things that I think about on a daily basis, but I cannot go there yet. A is logical, realistic, and matter of fact. But this is why I love her so much. I know she is only telling me the things she is telling me because she wants to make sure I am as informed as possible and that I have thought about everything, every possibility, every outcome. She does this for me because of the love she has for our family. All that bullshit about doctors not getting personally involved with their patients is bullshit with A. She is fully invested and proved that by the way she ran out to our car today to chase us down to give us one last hug and kiss goodbye. Nobody at fucking Sloan would have done that for us. I think I may have set the bar a little too high with them. Don’t get me wrong, I still think they are one of the best hospitals in the nation. But they will never compare to my little PCH and the kind of quality care we get there. Today, I felt like I was floating on a fluffy cloud with all of my favorite people waiting for me with open arms. As shitty as the circumstances are that we were back, it filled me with the love that I have so been missing.

Dr. Maze also came back to see us again and say goodbye. We will see him soon and Ronan asked after he left if he could come with us. I told him I didn’t think so, but this time we won’t be gone so long so we will be back to see him soon. He smiled and told me that made him happy. Little love bug.

While I was waiting in the isolation room with Ronan as he ended up needing platelets and blood, I saw the woman who walks on water to me. Dr. Adams. I hesitated to chase her down but Fernanda was like, “Are you crazy?! You know that woman always makes you feel better!” Did I forget to mention that “Nanda,” as Ro calls her sat with me all day long? My darling, F. I don’t know what I would do without her. Actually, I do. I would not be getting though any of this and would be curled up in the fetal position somewhere. Anyway, as I was getting ready to chase down Dr. Adams I looked at Fernanda and said, “I can’t see her, my entire ass is hanging out of my pants!” I’ll have to back up the story on this one. I forgot to mention that I was wearing this pair of pretty thin seersucker pants today and when we first went to the clinic and I was getting Ronan out of the car, I dropped my cell phone and bent down to pick it up. I heard a big, “Riiiiiiipppppp.” WTF?!? I turned around to Fernanda and said, “Did my pants really just rip and is my ass cheek fully exposed?” Indeed they had. The only thing I could do was laugh and roll with it. I spent the entire day pulling down my tank top to cover up my bum as to not expose anyone to the beauty of my milkshake maker. You know, my favorite booty song…. “My milkshake brings all the boys to the yard.” Yup. I fully brought my milkshake to the clinic today and I don’t think Woody would have appreciated it if any boys came to my yard. Fernanda, of course had the problem solved as she had another pair of jeans with her. I threw those on and went down to see Dr. Adams. I peeked around the corner and there she was. I waited for her to see me before I approached her. She had no clue we were back and it took her a minute to register it was me. She looked at me for a few seconds and goes, “What are you doing here. I did not want to see you back.” I calmly explained the situation to her and she teared up and pulled me into a room. She hugged me, held my hand and locked eyes with me while we discussed everything. And I mean everything. She kept telling me that what matters now is the care that I am giving to Ronan, which is 100% my complete love and strength, but I also needed to let him know that we are all allowed to be sad because none of this is fair or right. She was 100% supportive of trying this MIBG therapy. We touched a bit about how his cure rate is now becoming slimmer and slimmer. I told her I knew all of this but I didn’t care if there was a 5% chance that he could beat this. I wasn’t giving up yet. She told me she knows what good parents we are and we know what is best for Ronan at this point. I don’t think I’ve said this before but just being in her presence almost scares me; but in a good way. I swear to god I’ve known her in a past life or something and I also swear to god that she is seriously an angel walking around on this earth. She has such a presence about her and is one of the most beautiful women I’ve ever come into contact with. When I am with her, it is as if she gives me the strength that seems to be surrounding her at all times. She has a very strong aura about her. I feed off of this and I actually felt really calm around her today. I always feel calm and at peace when in her presence.

We had our sweet Patty taking care of us all day. She is not even a nurse to me anymore; she is my friend. She sat with me, cried with me, laughed with me, and helped me with Ronan as much as he would allow. She helped me out to my car and carried all of our things. It was so nice to be back home today and I was so glad Patty was the one taking care of us.

Um, yes, hello. I could write a freaking novel tonight while on this red-eye. I should be sleeping but I have too much buzzing around in my head and to much to talk about today. I’m getting so sleepy but I want to touch on this woman Joanna who emailed me today and her email said please call me, I promise I’m not crazy. What the heck, I thought so I picked up the phone and called this lady who lives in Toronto, Canada of all places. Instant connection. She told me the most amazing story about something she had just experienced and swears it is a sign that Ronan is going to be o.k. I believe her. I cannot go into details because at this time, I am seriously about ready to pass out. This stranger picked me up off my feet today when I needed it most. We talked about fate, the timing of all of this MIBG therapy as if we would have started this any later…. Ronan would not be eligible for the antibodies that come after this due to a time period. She said maybe Dr. Kusher kicking us to the curb was a blessing in disguise because now we will start this therapy and if we get the response we are fucking praying our asses off for, Ro will still be eligible for the antibodies. We will cross that bridge when we come to it, but you all know I love a good fate story. Fate and hope are what I’m hanging on too.Thanks Joanna, for reaching out to me. It meant the world to me today.

Also, I am learning such lessons from a little 10-year-old. Not really lessons, but more like what it means to see this through the eyes of a very wise child. Mr. Luke Ashworth, my heart will forever be yours. Ronan’s cousin has been such a blessing to us. He loves my Ro so much and Ro loves him just as much. Luke gets all of this, as he is wise beyond his years. He looked at me tonight and goes, “Promise me you’ll never give up.” I looked at him and said, “Luke, of course I will never give up. I promise you that. I will never give up on Ronan.” We had our moment and I will never forget it as long as I live. He thinks about Ronan so much and is so worried about him. It takes a very special boy to be so concerned about something like this. I am so proud to have him as a part of our family.

This is all I can do tonight. Long enough for you all? Geez! Blabber mouth city could not shut up tonight. Adrenaline I guess. I’m in mama lioness fighting mode. One more thing I want to  mention…. Thought-out all of this I find strength in so many places, but one person in particular is always on my mind. It is someone I never knew, but he is one of my idols; Pat Tillman. I have called Ronan our mini Pat Tillman since he could walk. I often think about Pat and how strong-willed he was and just what an amazing man and role model he is to our family. We all worship him. I think about his strength and bravery and I channel this by thinking about him when I think I can no longer go on. He helps me put back on my fuck you cancer boots and continue to fight. I know if he were here and in a twist of fate, he were to meet Ronan, he would never give up on him. I feel like he is one of our angels watching down on Ronan wherever he is. Ronan reminds me so much of him… just the little I know of him from reading some books that have been written about him. One in particular by his mom. The things he did as a child are so similar to the spirit the Ronan embodies. So, Mr. Pat Tillman…. thank you for being the definition of what it means to be a real man and to fight for what you belive in no matter how many people tell you differently. You will always be a hero and a god in our eyes.

G’night my lovies!!!!!!! Or G’morning I should say!

So proud to have you all by our side and I will never get tired of saying that. You mean so much to us. CHOP here we come. Dr. Mosse, I have faith in you; I’ve known this all along. NOT GIVING UP. Who could give up on a fact like Ro’s?? Only the UGLIEST of souls.  And we don’t allow ugly souls on this blog.

We are here. We made it. I have not slept in 24 hours which is probably why my post was a little “hyper.” Adrenaline. In a turn of events, Ronan’s pain in his legs that he has been having, which has been horrific, is not bothering him at the moment. As soon as we stepped off the plane, he started smiling and told me he loved me so much. He has not complained once since we arrived to our room. I have a good feeling about this Philly place. I sent Dr. Mosse an email at 6:30 this morning telling her we had arrived, we were at her mercy, and would do whatever it takes to get Ronan started on this treatment as soon as possible. Not 10 minutes later she emailed me back saying no child should be in pain and that they will move his treatment from next week up to this Thursday. Now that is an amazing doctor. Talk about class, compassion, and heart. I knew this about her from the first time I met her. This is our time now. Things are falling into place and I am going to keep holding on to my belief of that. As Tricia dropped us off at the airport tonight and hugged me tightly she whispered, “Bring our baby home.” You bet your ass I will, TT. I promise you that.

Time to try to get some shut eye; although it looks like Ronan has other plans as he has set up a whole battlefield of Star Wars guys in our bed. Love my little fighter so much.

I hope you all have a beautiful day.

xoxo