Ronan. If I had known I wasn’t going to have you forever, I would have taken a million pictures. I would have recorded your every word. Because the things that I have left of you, are not enough to quench my never ending thirst for you. You, my everything. You, my 3rd child. You, my baby. You, my best friend. You, my partner in crime who never left my side. Now, I only get you in the pictures I have left. The videos that hurt too much to watch. The beautiful things that I see throughout the day, that remind me of you. The memories that everyone that knew you, continue to share. Nothing will ever be good enough. Nothing will never lift this never-ending sadness of mine that seems to sink deeper and deeper into my bones every single day. I met a mom recently who lost her little boy to Neuroblastoma just a year and a half ago. She is young, beautiful, and funny, but carries around the same sort of sadness that I do. She told me, after being a year and a half into this, that the pain is no longer on the surface of her skin anymore. It is now in her bones. That is the best way I have heard the loss of you, described by another. I would agree with her. The pain is no longer on the surface; it is so much deeper than that. It may not be as sharp and raw as it was at the beginning. Now it is heavy as I think the loss of you has sunk in deeply. All the way to the bones in my body. I will continue to carry this heaviness for the rest of my life. I don’t expect it to ever get easier or lighter. I’ll bet it just gets heavier as time goes on, without you.
Your daddy is in Arizona. I am here, in Coronado with your brothers. This means mama mode, 24/7. It’s not easy. It’s hard to put my sadness on hold for your brothers 24 hours a day. I’ve been doing it as best as I can. I have been only breaking down to cry, when it’s night and they are tucked away, fast asleep. I am alright with crying myself to sleep, solo. It’s kind of what I do best these days. We have been filling our days with the normal things. Lots of beach time. Surfing. Swimming. Baseball. Laughing. Your brothers are happy. I notice that they get sad about you when things are quiet around here and we don’t have your craziness to fill the silence of the room. I can see it in their eyes, the way they miss you and your mischievous ways so much. They don’t have to say a word because I can read them both like a book. It’s tough for me to see. I don’t like to see your brothers hurt. They are such good boys. I’ve got them in bed with me and they both are sleeping so soundly. I know if you were here, this would not be the case. You would be snuggled up with me and your brothers would be sleeping together in their room. Or maybe by now, you would have wanted to be a big boy and sleep with your brothers in their room, without me. Either way sounds like heaven to me. It sounds so perfect compared to where you are now. Being separated from us is so very wrong. It will never be right, Ronan.
I panic about you a lot. I worry about you so much. Where are you? What are you doing? Who is taking care of you? Why is it not me anymore? These questions fill my head everyday, all day long. I don’t think I’ll ever have an answer which only makes my worry, worse. I asked your Mr. Sparkly Eyes a question today. Another one of the 500 questions I am constantly throwing his way. I said, “Do you think if I do enough good things in the world, that I will see Ronan again? He told me that he was absolutely sure that I would see you again. I told him I hoped he was right. That he is right about most things in life, so I would believe him. That may be one of the only things that will get me through this life without you. A life of constant do gooding, so I get you in the end, once again. The separation from you, is eating away at my soul. It’s almost too much at times. And Ronan, is May almost over? Because I hate it. It has been the longest, worst month, ever. May is some kind of sick joke and I feel like it has been 4 months, wrapped in one. I am so ready for it to be over. May can suck it.
I am thankful for the people in my life that care enough about me to shed some light on things that I may say, or write on here, that may not always come off as good. As I always say, I don’t re read what I write on here, and it’s been brought to my attention that I my last post… may have come off in a way that I did not mean for it to. I took a second to go back to my post and actually read it, again. I think it came off as I was bashing the Ryan House. I could see how my words, may have seemed like that. That was not my intent at all. Bear with me for a minute, while I try to take my words and put them a little more eloquently. I’m not always so good at this, so I will try, once again.
Just please put yourself in my shoes for a second. Imagine yourself, as me, going through the worst thing possible in life. Losing a child. To me, every single thing about going to the Ryan House, was scary. I wanted Ronan, to die at home. I did, for him. Because after going through 9 months of treatments, the only thing Ronan asked of me was to please go home. He always wanted to be at our home, with us, and nowhere else. Our house, always made him happy and it was always where he begged me to be. So, after 9 months of hospitals, clinics, strange cities, hotels rooms, and being separated from his brothers, it seemed as if the least I could do, was finally let him be at home to be happy and at peace. I had a lot of people surrounding me at this time. Everything was such a blur, but I vaguely remember going to the Ryan House, once we were told there was nothing else we could do for Ronan, to take a tour. I honestly don’t remember any of this, except for bits and pieces, here and there. I still remember thinking we were only going there to get his pain under control because the every 2 hours of morphine by mouth that I was giving him, was not working. At this point, going to the Ryan House was not my decision anymore. It was decided for me by my husband and close family and friends who I trusted enough to make this decision, for me. Once we got to the Ryan House, I was tucked into a room with Ronan and I don’t really remember leaving his bed much. The place was filled with family and friends and a safe environment was created for my twins which I am so thankful for. Ronan at this point, was still begging me to go home. I remember having to take a step back, and think about Liam and Quinn at this point. Letting them have the memory of Ro being at home, dying, did not seem right so I chose to listen to everyone else, and keep him there. As much as I am not thankful to the Ryan House, because as I said before, no parent should have to be thankful about taking their child to a place to die; I am thankful for the world it created for those around me.
It was at the Ryan House, that I watched death come in and transform my beautiful baby boy, into something that was almost unrecognizable. It turned his eyes hollow, his skin yellow, his body to bones, his lips white, and his flat belly, all boated and swollen. How could I have any good memories of this place? What mother would? Even typing out these words, trying to fix the way that I may have come off, is so difficult that I cannot do it without my hands shaking and tears streaming down my face. I live with these memories of my Ronan, every single day. The last moments of his life, haunt me. They destroy me. But I will be a big enough person to apologize to anybody whom I may have offended. Please know that was not my intent. I am just a mom. A bereaved mom to a child that should have never been taken to a place like the Ryan House because he should have never gotten sick with cancer in the first place. Looking back at everything I went though, I will stand by words and say that mistakes were made. This is my opinion and my opinion only, but to me, when a family goes through something like this, I think every resource possible should be available to them, not just one or two options. I don’t understand why rules, politics, and businesses have to exist, in a world where nothing makes sense. I see things from my perspective that I know, could have made things better. Maybe even a little less traumatic for a mom like me, who was in such shock from what was going on around her, but even then, I would have welcomed a stranger to come in, hold my hand, and gently explain to me what it was, that was happening to my little boy.
Ro baby. I have to end this now. I am not here to burn bridges, I am here to being open and helping to fix them. But I write. It’s what I do. I hope people can respect where I am coming from as I know it does not always seem fair or right. But these are my experiences and I would not be being true to myself if I started censoring my thoughts and feelings. I will be the first to apologize if my last post came off in a way of bashing anyone. As I said before, that was not my intent at all. I have a lot of pain, regrets, and sadness from what we have been through. I also see a lot of light and ways that they can be fixed for others families that will walk this path after me. All I want to do, is make this awful world, a little less awful for others.
I love you, Ronan. I miss you and hope you are safe.