“Why? Because I’m scared.”


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Ronan. It’s official. For as much as I don’t want to slow down, I have to slow down. My body is screaming at me with everything it has to just stop. I have never been more bloody exhausted in my life. Your sister is so heavy that even just walking around trying to do normal things leaves me breathless and feeling like I want to fall over. Not cool. This is not how I roll. I am glad I crammed in every last thing I could before this hit me such as my little New York trip, foundation things, appointment things, etc… There is no way I could have gone to New York now. I can hardly get out of bed to tackle our laundry situation over here or keep up with the cooking/taking care of your brothers. All my body wants to do is rest/sleep. Otherwise known as my personal hell.

I spent the weekend taking it easy. I’ve had a bad cold to go along with this pregnancy that has wiped me out even more. I know this is just another way my body is telling me enough is enough. Your Papa Jim has been in town since Friday. He’s been sleeping in your room which you know always brings me comfort. Just the thought of knowing somebody is in your little room, brings me a sense of peace. I love it even more when I catch your brothers playing in there, with all of your Star Wars toys. They are still young enough to enjoy them every once in a while. I spent all day Saturday at my happy place, otherwise known as your brothers basketball games. They had games starting at 8 a.m. back to back to back. I felt like crap but there was no way I was going to miss their games. One of my favorite things in life now is watching those two play basketball. You would be so proud of them and how well they are doing, Ronan. Your two brothers constantly leave me amazed. They are such good sweet souls, even after all of this. I am so lucky to have them.

One of the things I did with Dr. Jo on Friday was go over our timeline that we sat together and wrote out about a year ago. It started from your diagnoses and ended the morning you died. You know I don’t have much of a memory of anything and one of the things I really struggle with is regret. She asked me to change anything I wanted to in regards to things I would have done differently with you and your treatment. Of course I changed things. A lot of things. I would actually like to change almost everything because what if by changing one little thing, your outcome would have been different? We will never know this. Your daddy still swears to me that your disease was so aggressive that it wouldn’t have mattered. It matters to me and I don’t know that I will ever be able to forgive myself, Ronan. I don’t care if at the end of the day, you would have died no matter what we did. I will forever hold on to you were my child and I should have been able to protect you and save you from anything and everything. Even stupid fucking cancer.

The first thing I told Dr. Jo I would change was I wouldn’t have had you die at all. Obviously. If only it were that easy, right? We then moved on and went over the doctors, hospitals, treatments and ended all things at the Ryan House. I sat there and sobbed while talking about this and told her I wish I would have never taken you there. Looking back now, I understand it was what we needed to do, to get your pain under control because feeding you morphine every hour on the hour was just not cutting it. But that little voice in my head will always go to the very painful place of at the end of the day, after everything you went through, you just wanted to be at home, in your house and I should have listened to you and not everyone else. It’s the least I could have done as your mama. I know a big part of not having you die at home was to protect Liam and Quinn, but I really don’t think having you here, would have hurt them as much as we thought it would have. They were with us when you died, it just happened to be at some strange place that it all happened. They will always have that memory of you there and I don’t think having you away, out of our house, will make that memory any better for them. How could anything possibly make the memory of their little brother, the most precious thing on earth to them dying, any better? I told Dr. Jo how I vaguely remember hospice meeting us at the airport after we had returned back from Philadelphia when we were told there was nothing else that could be done for you. How I had a stranger riding in our car with us and I remember being so angry because I felt like I had no control over anything and now there was a stranger riding in my car with us whom I had never even seen let alone talked to in my life. I remember hospice coming to our house and I told your daddy to get them out. End of story. I didn’t care who they were or why they were here, all I knew was that nobody really explained anything to me at all but I was just expected to understand everything that was happening. I told Dr. Jo I wish it had been her with me at this time. Because I know Dr. Jo. I know she knows better than anyone how to handle this very delicate situation. She would have done things in such a way that I would have been open to her. She would have had the decency to gently first of all, ASK me if it would be alright for her to be with us, to help us with anything that we might need or not understand. She would have ASKED to meet you and not just pretended like you were a baby who was already dead. She would have cried with me and understood my pain in only a way that a mother whom has also lost a child, can do so. Her expertise on all of this would not just come from a book or a class she took. It comes from so much more than that and I know I would have been able to feel all of that. I wished it would have been her, sitting with me, helping me, explaining to me everything that was happening/ going to happen. I wish it would have been her that would have told me I could have spent as much time with you as I wanted to after you died. That there was no rush to have your little body placed in a bag and wheeled away, never to be seen again. I wish it would have been her to have sat and wept with me, held me and helped me find my way back out into this bright, bright world in her oh so gentle way. It certainly would not have been her saying, “See you later, have a great summer,” never to really be checked on again. I wish I would have found Dr. Jo before you died. It did not happen this way, Ronan and because of this, I know one thing for sure. Dr. Jo could not be with me for your death but she will be with me for the birth of your baby sister. I’ve been thinking about this for a long time. I’ve talked to your daddy about it. Our conversation was brief and simple. I was laying in bed, crying I think.

Me: “Woody. I need to ask you something.”

Him: “What?”

Me: “I want Jo in the room with us when Poppy is born.”

Him: “Why? You are always so calm and you always do great.”

Me: (trying not to get frustrated because I don’t think your daddy understands the depth of this for me, having another child after having a dead child and how mentally hard this is) “I have always done great when I didn’t have a dead child. This is completely different now.”

And then I just said it, plain as can be.

“Because I’m scared.”

Him: “O.k. whatever you want.”

Me: “Thank you.”

I called Dr. Jo today. I asked her. She started crying on the phone. She said she would be honored. I told her thank you. That I don’t know if I can do this without her. She went on and on about how if I change my mind at any point, she will totally understand. I said I knew that. As of now, this is my plan. Did I also mention that Dr. Jo is a doula? Kick ass, Dr. Jo. I see this as a win/win. Not only is she here to help me with death, but also with life. She has been my lifeline through all of this, Ronan. I only wish there were 500 more of her to go around to help all the parents out there, dealing with the loss of a child. Nobody gets this the way she does. She has such a gift that is beyond this world.

It takes a lot for me to feel scared in this world anymore. I am scared for the birth of your sister. The range of emotions I am feeling come with such an overwhelming feeling of sadness and happiness and I know I need her to help me through this. I know when I need to ask for help and I need help with this from both you and her. I know with the two of you things will be a little less scary. In my heart of hearts, I know you are going to make sure Poppy gets here safe and sound. I will always trust in you and the way you are guiding me. I think you want Dr. Jo in the room with me just as much as I do. She should have known you, but since she didn’t she will know about you through the eyes of your brothers, the tears in my eyes, and the birth of your baby sister. Such a beautiful gift she is going to be, Ronan. Thank you for her.

I miss you. I love you. I hope you are safe. Sweet dreams, little man.

xoxo

 

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28 Comments

  1. Shawna

     /  February 18, 2013

    How is it that I can feel such a connection to a little boy and his family. Hugs from Canada, and thank you for continually reminding me of what actually matters in this life. Praying for peace as this beautiful and heart wrenching time draws nearer.

    Reply
  2. Chelsea

     /  February 18, 2013

    We need more foundations like the miss foundation, and they definitely need more funding. Dr. Jo is moving mountains!! This post was so beautiful it brought tears to my eyes. It is so beautiful and fitting to have her in the room when Poppy is born. She’s a doula, too, which just shows how Ro-destined this is :)

    Reply
  3. Jasmine

     /  February 18, 2013

    I get so pissed off reading this because you shouldn’t be writing to your dead son because your son should NOT be dead. He should be in your arms right now getting even more excited for Poppy’s arrival with each day that passes. You’re right, there is no better place for Ronan to be than your arms. That’s where Ro belongs. With you and Woody and L and Q and Poppy. Thank you for sharing this with all of us. I love you and you are in my thoughts every single day.

    Reply
  4. Samantha Martin Sprenger

     /  February 18, 2013

    Oh, this little Poppy… I am holding her in the Light. Her entry will heal so many of us. It’s so good to have women whom we love with us at that time.
    Please take is easy Mama Maya.
    xoxo
    S

    Reply
  5. Melissa V

     /  February 18, 2013

    Love to you, Maya. May Poppy’s entry into this world be as beautiful as all of the people surrounding her.

    Reply
  6. HI Maya-

    I hate to do this but just got a call from a good friend who asked me to look at a CB website for a girl with Neuroblastoma and to tell me what I thought her prognosis was. . I had just read your update tonight a few hours earlier! I said to my friend, “Not good!” I know you need to rest but I thought maybe if you have not heard of her then you could reach out to the family or the sweet girl. From the little I just read on her site she was diagnosed about a year to the day before Ronan was and then cleared after treatment. She JUST relapsed. Sooooooo bloddy awful. It sounds like they are headed up to UCSF to probably see Dr. Matthay (our son Jack’s doc) and the one you saw with Ronan. Anyway, I think you are an amazing person all around and if nothing else I thought you could visit this darling girls site on CaringBridge. Her name is Katie Hawley.
    Rest rest rest Maya.
    Deborah

    Reply
  7. Glenda

     /  February 18, 2013

    RoMama,
    My heart aches for you! Ronan should be here. Cancer is a fuckwad! I’m happy you have Dr. Jo. I wish she was with you when you were going through your worse nightmare. Always thinking of Rockstar Ro! Rolove always!!!
    Rest rest rest. Poppy needs you to rest!
    XO

    Reply
  8. Maya, I am glad and sad that you are having to rest. Glad because I know you need it and so does Poppy. But sad because I know how it makes you feel to have to lay in bed. Believe me, I hate laying in bed too. If you want, we can call and watch shows together, or text, or just chat. You know I’m always here.
    I really couldn’t imagine you *not* having Dr. Jo in the room with you. This part you wrote struck such a chord with me – “Not only is she here to help me with death, but also with life. She has been my lifeline through all of this, Ronan.” And Woody is so awesome – as usual.
    Sending much love and many hugs your way. Call, email or text – I’m going insane in my bed with the chemo. Maybe we can come up with more crazy plans about kicking cancer’s ass.
    And Maya – I know you know this, but, it’s okay to be scared about Poppy’s birth. Just knowing that you have an amazing support team in the room with you, and tons of us all over the globe, we are all here supporting you.
    xoxoxo
    Jen

    Reply
  9. Tara Jablonski

     /  February 19, 2013

    Oh Mia, there you go, writing your amazing words. Tell me…..when is your book coming out? I think you have a gift f writing and nothing is more soul bearing than writing about your very own experiences. God speed and strength to you during the scary, wonderful, painfully bitter sweet time in your life. The strength of a mother is wonderful, the strength of a mother during childbirth is unmeasurable, the strength of a mother caring for her children is thrice that……you, my friend, are one of the strongest.

    Reply
  10. My dear Maya, I can’t imagine what you’re going through right, so I send you all my best wishes, my heart is with you and I hope that you feel better (from the cold) and that despite all your sadness, your heart fills with joy when you see the face and hold in your arms the beautiful Poppy.
    Take care,
    Giovanna

    Reply
  11. Sara

     /  February 19, 2013

    You don’t WANT to rest,but you NEED to rest Maya.We will always be with you.Love from Albania.

    Reply
  12. Chris

     /  February 19, 2013

    So happy for your decision to have Dr. Jo with you. I too wish there were armies of Dr. Jo’s. I hope she has dozens of staff who are learning to be like her.

    Reply
  13. Angela

     /  February 19, 2013

    Oh Maya, Tears….I am so sorry and wish I could make it all go away….and bring your Rockstar back to you. I feel your pain and your fears and remember it well. Pregnancy and impending birth should be filled with nothing but excitement. After such a loss it’s more like a form of bittersweet torture. I would never wish it on anybody. I’m so glad that you will have your Dr. Jo Ro with you when Poppy comes into this world. Unless you’ve been there there is just no way of understanding the overwhelming emotions. I can only imagine that she will do wonders…

    Reply
  14. terrie

     /  February 19, 2013

    Thinking of you and your family everyday.

    Reply
  15. Sarah

     /  February 19, 2013

    Maya, you are such a soldier. Your blogs never fail to make me cry and remind me what is truly important. You are such a special soul. Thank you for being you. Ronan is loved by so many, just through your words. My prayers are with you as you approach your delivery of sweet Poppy. You’re going to do great. Ronan will make sure of that ;)

    Reply
  16. Katie

     /  February 19, 2013

    Maya love, there are no words, just tears. Wishing your sweet Ronan was here with you.

    Reply
  17. Aleigh

     /  February 19, 2013

    This breaks my heart.

    Reply
  18. Daniella

     /  February 19, 2013

    I love the connection you have with Dr Jo. I can hear the love you have for each other in your writting. She is such a beautiful gift. Sending you thoughts of peace during your downtime and rest. Poppy is already so loved, Ronan is loved, Liam is love and Quinn is loved – what an incredible mama you are!

    Reply
  19. Tisa

     /  February 19, 2013

    I know we have never met…. But I love you! I’m holding space for you.

    Reply
  20. Shay

     /  February 19, 2013

    Glad you have found a soulmate in Dr. Jo (I don’t believe we are limited to one soul mate, that notion seems silly to me). Ro brought you two together in your time of greatest need and that is a beautiful thing.

    Hindisight is normal but please know that you did everything you could for your sweet baby boy. Everything. And then some. But his cancer was so malignant and so aggressive that there’s just nothing out there that could cure it. Yet. I know that you and others are working hard for better treatment options, so that future Ronans don’t have to go through what he did. It is ok to rest sometimes, though, pregnant or not, and Ro would want you to rest when you need it.

    Congratulations in advance for what I’m sure will be a beautiful birth experience.

    Reply
  21. I am so glad that Dr. Jo will be there with you. Having a baby in of itself is scary. Having a baby after another child has died is petrifying. It is more than ok to be scared.

    I had our twins after our oldest son died. I am still amazed that I made it through that pregnancy. I am so thankful for our 5 year olds that there are times I can’t stop hugging them.

    I had an early miscarriage after our youngest son died. I do not know if I will ever shake the feeling that my fear/stress caused the miscarriage. Sending you hope and hugs Maya. And as always a big FU Cancer!!

    Reply
  22. Katie

     /  February 19, 2013

    You are amazing! I am so glad that you are going to have Dr. Jo with you. Best decision ever.

    Reply
  23. Im so glad she will be there after poppys born. It would b really special for her and ronan will be there when poppys born safe and sound. You get so much connection with daughters and moms. They hve alot n common and when u go shopping, its good to kbow someones there with you to agree with you for whatever fashionable things you should buy. Im always happy taking out my daughter with me and so will you! She looks so much like ronan in your womb! I cant wait when the news cones and shes here. Be sure to send us lots of pics and keep us updated! I worry alot when you dont but
    i do respect tht u need lots of rest.

    As usual, u hve inspired me so much!
    – s

    Reply
  24. I had my son after my first born son died. I was terrified that I’d somehow go into some delayed grief and reject my new son or something or that I’d be too stricken with flashbacks I wouldn’t be able to care for my newborn. Luckily none of That happened but I sure could’ve used a Dr Jo at that time in my life! So glad you have her. ❤

    Reply
  25. Phaedra

     /  February 20, 2013

    I am so excited Dr. Jo will be there with you! I think that is beyond brilliant! And what a wonderful gift that will be for her, someone who helps so many with their loss and pain. Just wonderful.

    Reply
  26. Peyton

     /  February 20, 2013

    Life sucks, doesn’t it?🚀
    I mean it’s just not fair… It isn’t fair that Ro got cancer and that other kids have diseases and infections and scoliosis and that there are perfect looking teens that prance around like they are sooo great and snicker behind our backs. the people that are mean get perfect lives but the ones that are the kindness get The painful lives. I have scoliosis and I think it’s hard but look what Ro had to go through… He went through way worse
    Someday this disease will end… All because of an amazing little boy… Ro

    “carry on , carry on, cause nothing really matters, as anyone can see, nothing really matters to me”
    – Queen

    Ro deserved the best life…. I hope with all my heart that someday this disease will be beaten

    ” everybody hurts, and everybody cries, sometime, so hold on hold on”- R.E.M
    Sometimes it’s okay to let it out, to cry with all your heart

    Love,
    Ro’s biggest fan

    Reply
  27. Maria

     /  February 21, 2013

    if there’s one thing i take away from reading your blog it is gratefulness for having my son, here, healthy, with me. i sniff his hair and blow raspberries on his neck and i tell him i love him and, sometimes, i say a quiet prayer for you, and for ro, and for the pain you’re feeling, and i thank you for reminding me how grateful i am for being alive, really. i wish it wasn’t so difficult, but i see that it is, and so i say a quiet prayer for you and i wish you well. good night, maya.

    Reply
  28. Rach

     /  February 21, 2013

    Love

    Reply

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