It takes a big person to tell me when I have maybe crossed a line. It takes an even bigger person, for me to listen to.


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.

xoxo

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15 Comments

  1. Jenn

     /  May 31, 2012

    My heart weighs so heavy for you. I am saddened by every word you write and every picture I see. I cry for you on a daily basis. We are the same age and I have two small boys. I cannot imagine ever having to go to s special home for my baby to die, that is horrible. I can understand your feelings for the Ryan House, I think any mother could. They should provide every resource imaginable to you and other families. It’s sad that they don’t. Hopefully you will change that and make a difference to someone else. I think of you daily and cry for you often. I hate that cancer destroyed your family and many other families, it’s not fair and it sucks. Much love sent your way.

    Reply
  2. Cheryl

     /  May 31, 2012

    So well said Maya, and told with true feeling. No parent or child should ever have to deal with death, bit sickly it is a fact of life. I know Ro is so proud of you. Never feel bad for what your feeling. Just be true to yourself. This is your story so tell it like it is.
    XOXO. Cheryl

    Reply
  3. Mike

     /  May 31, 2012

    You shouldn’t feel you need to defend your comments. I read your post and you pointed out a deficiency in their process. They should relish the direct and honest feedback and make changes where appropriate. There are some here in Boston who have worked hard to affect change in pediatric hospice and have made progress. Keep at it.

    Reply
  4. Glenda

     /  May 31, 2012

    Always thinking of you RoMama and Rockstar Ro! Always Ro! xo
    I love your honesty and raw words. You’re keeping it real and true.
    No parent should ever have to go through what you, Woody, Liam & Quinn went through (are going through)
    This is your story… your experiences… raw and real… Rock on RockstarMama!!!
    xo

    Reply
  5. Hurray for the end of May. Thank you for making this world a little less awful for me. xo

    Reply
  6. Laura

     /  May 31, 2012

    Here is to June. Our love and thoughts are with your entire family always.

    Reply
  7. melissa

     /  May 31, 2012

    I hope people that might have been hurt by your experiences at the Ryan House will look beyond their feelings and make every single change you discussed and not stop until every family walking out of their doors without one of their precious babies will do so with more love, support, and knowledge. Things only improve when we learn from our mistakes, I must believe the Ryan House aims to help. families and you have only share opportunities for growth. Love to you and your beautiful boys..Happy end of May Day!

    Reply
  8. Katie

     /  May 31, 2012

    I know June won’t be all rosey & full of unicorns, but I wish & hope strongly that it will be at least a slight bit easier to breath & enjoy moments in, than May was for you. I don’t know if you realize just how many people are hoping for smiles for you!
    And if it helps you accept May being on the calendar still, think of Ro (sweet, beautiful INNOCENT Ro) was still with you in May. You got to hold his tiny hand in May. You got to tell him you love him to the moon and back! There is at least one good thing about the God Awful month!

    Reply
  9. phaedralbh

     /  May 31, 2012

    I didn’t take it as bashing on The Ryan House. I heard a sad momma talking about her pain… But hell, maybe I read it differently than others.
    I give you major “big ups” for ‘clearing’ it up for people though. Some people may not hear it in the way you intend but you got all of us who do!!
    Loves from the PacNW all the way down the coast mama. xoxo

    Reply
  10. I didn’t think you were bashing Ryan House at all. I remember you wrote that Ryan house was a beautiful place when you were there. I think we all wish that a place like this didn’t exist because parents should never have to take their babies there. I remember all you wanted was to take Ronan home but you also wanted him to be comfortable. As much as he wanted to go home, I think it really was for the best. You hate being in that house as it is…I don’t know how you could be there at ALL if it’s where Ronan had passed away.
    I don’t have anything else to write tonight except I love you xo

    Reply
  11. Mom too

     /  June 1, 2012

    I agree Ali. That vision would be too much to bear in your own home. Peace and relaxation to you in SD.

    Reply
  12. Sue Brigman

     /  June 1, 2012

    Maya,
    Your Sunday marathon is coming so very soon, and I just wanted to say that my heart will be with you every mile of your way. Your Mom said you will finish, she says she knows you will finish. I know you will too. Sue Brigman

    Reply
  13. Leslie Lax

     /  September 15, 2012

    I don’t know you Maya and I didn’t Know Ronan until Taylor Swifts song came out. I have been reading about Ronan’s life and all that you have endured and will continue to for the rest of your life. I am a Mom too and when I read your words about your baby boy I realize I would feel EXACTLY like you do and I would say fuck a million times. I did not take any offense to ANY of your words and feelings. You are a Mom going through the worst hell anyone can imagine. I know if it weren’t for Liam and Quinn you would have truly died. You go on for them. All that you’re doing in honor of Ronan is heroic. Instead of laying down you have stood up. You are fighting for all the kids and parents going through this. You are kicking cancer’s butt for Ronan !! I don’t pity you Maya but I am so very sorry for you. So sorry that you have this cross to bear. I wish this wan’t happening to you or your family. I wish it didn’t happen to any family. Children aren’t supposed to die before their parents. End of story. I wish I could put my arms around you. I know it’s not going to change anything but I just want to. Please don’t ever apologize to anyone for your words, thoughts or feelings. You’re a Mom whose lost a child. The haters can go to hell. I’m sorry if I’m getting a little crazy now but it just makes me so mad how people can judge others when they know nothing.
    I know my losing my 90 year old grandma isn’t the same but I read something that brings me some comfort. It says: “Those who die in grace go no further from us than God, and God is always near”.
    I don’t know how you’re feeling about God these days but I just wanted you to know Ronan is near you always. Those words bring little comfort now but maybe someday they will help.
    I know you’re pain is forever. I also know you are going to make a big difference in the lives of families going through cancer too. You are remarkable ! Ronan would be proud.
    Love and prayers, Leslie

    Reply
  14. Claudia

     /  September 15, 2012

    Mrs. Maya i knew about Ronan because Taylor Swift and every time I listen to her song i cant stop crying and now im crying too because of this story told by you. Ronan was a really brave little kid he is my idol even though i just knew about him, your strength is admirable i don’t know if i could ever get though the things you have been through. Ronan i now an angel and he is protecting you, your husband and the twins :). I was really interested about this little warrior story and i wish i knew him. i dont know you too but i hope someday i get the honor of meeting you because you are an example of women and a example of mom, at least for me. I am from Latin america and im 13 years old and i am really inspired by you and Ronan. You are definitely not alone in this :)

    Reply
  15. claudia24199

     /  September 15, 2012

    Mrs. Maya i knew about Ronan because Taylor Swift and every time I listen to her song i cant stop crying and now im crying too because of this story told by you. Ronan was a really brave little kid he is my idol even though i just knew about him, your strength is admirable i don\’t know if i could ever get though the things you have been through. Ronan i now an angel and he is protecting you, your husband and the twins . I was really interested about this little warrior story and i wish i knew him. i dont know you too but i hope someday i get the honor of meeting you because you are an example of women and a example of mom, at least for me. I am from Latin america and im 13 years old and i am really inspired by you and Ronan. You are definitely not alone in this our prayers are with you and your family.

    Reply

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