Rain, rain, don’t go away…and please don’t let Poppy be born dead.


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Ronan. It’s the middle of the night and I can hear the rain. It’s pouring down outside. I just went to check on your brothers and in doing so, I have to walk by your empty room. I peaked inside. Nobody was there. That reality never gets any easier for me. I think I ended up losing my shit yesterday. It was really triggered a couple of days ago when I came home in the middle of the day from somewhere and I walked into our quiet house. I had been working at our kitchen table and I had left a bunch of packages on top of it, right where you would normally be sitting. As I turned the corner to our kitchen, I thought there was somebody sitting in your spot. I thought it was you. I imagined it was and how I would react. I imagined scooping you up, kissing you all over, crying tears of joy, and saying over and over that I always knew you were really coming back. This image has haunted me for days now. I was out all day yesterday, being productive and came home after a long day of trying to be a part of this world. That’s when I lost my shit and could do nothing but pace our house, crawl in my bed, and cry for hours on end. Your daddy came home to see me in bed. I had gotten a text from my mom friend, Sarah, asking if I was going to support group tonight at Dr. Jo’s. I told her no, that sitting around listening to everyone talk about their dead kids, was not a good place for me. Especially as of now, due to the life that is growing inside of me. Support group is hard anyway but it’s even harder to go being pregnant. Sarah said she selfishly wished I was coming as she was wanting to see me. I wanted to see her as well and her partner, Rae Ann. Noah’s mom’s. I sent Jo a little text to ask if she was leading group. She said she was and she could see me before hand as well. I threw on some appropriate clothes (pants included) and hardly said 2 words to your daddy as I headed out the door with my tear-stained cheeks and blood-shot eyes. Our house was screaming at me and I could no longer take it.

I got to Jo’s a sobbing mess and told her what was going on. She sat, asked me some questions, gently reminded me of all the stress/crap/petty fucking stupid fucking shit/insane pretend problems that normal people have that I don’t understand anymore that I’ve been trying to deal with and understand/the fact that I’m about to have a baby/ and how your two years is approaching. No wonder I am freaking the fuck out. She knows these next few months are going to be hard. May is right around the corner, you know. I just sat and cried and talked when I could. Before I knew it, it was time for group to start. I had decided to stay mostly because I just wanted to be with Noah’s mom’s. It was a pretty full group. It went a little something like this. Stillbirth, me-cancer, stillbirth, stillbirth, stillbirth, 8-month old unknown cause of death, 3-year-old just stopped breathing, 8th month old-can’t remember, still birth, still birth, murdered child, 8 month old again. Of course you know why I think Poppy is going to be born dead. Because I live in the world of childhood cancer and still births. I talked a little but was mostly too upset to even tell your story. Support group never gets easier. The death of your child, never gets easier. It’s not something we will ever overcome. It’s not like AA, where we can recover from our disease, start over, and live a clean, healthy life. Our disease never goes away. I think about this a lot, especially when I am in a group setting like tonight. How the world is so accepting of people who are trying to recover from alcohol or drug abuse. How there is so much love and support out there for them over something that is a choice for most people. I understand that being an alcoholic or abusing drugs is an ugly, powerful disease in life, but most people, not all, make the choice to do these things. None of us parents, made the choice for our kids to get sick and die, yet there is so little love and support out there for us. Society doesn’t want to acknowledge us, Betty Ford doesn’t fit for us, the government doesn’t care about us. So where do we go and what are we left to do, to get through this?

In my dream of all dreams, after I get this care center built, I want to help Jo with one of her little dreams. That is creating a safe place, almost like a rehab for these parents to come to that have lost a child. A safe place for parents to come, with the proper counselors and proper kind of compassionate care that they so need. A place where bereaved parents can try to process their grief before being shoved out into the cruel, harsh, happy go fucking lucky world again where everyone has a living child, except for them. A Betty Ford for bereaved parents in a way. I would have went to a  place like that. I think it would have helped me a lot in the beginning. Oh, people wanted to send me away alright. But it was only to a mental ward where that shadow would have haunted me for the rest of my life because I’m sure I would have been given a permanent  diagnoses of bullshit that would have followed me around forever. This is a path of life that we as parents, will never get off of. There is no changing our course. There is no bringing our children back. We are stuck here, forever. It’s like the ultimate prison where we as parents have done nothing wrong except for love our kids with everything we have, yet we are serving a life sentence for a crime we didn’t commit. (well, unless you are someone like Casey Fucking Anthony, then you should rot in hell a.k.a. a real jail cell for the rest of your life)

There is no place for parents to go so we are all forced back out into a world that does not exist for us and we are expected to be o.k. Hey, our kid or kids just died but we’ll get over it, right? Life just goes on and we are expected to be strong because being strong is the only choice we have. It’s wrong. We all need a break from being this strong once in a while. Being this strong can be torture at times. Bereaved parents need a safe place to go where their children are remembered and they can take a break from being strong for a while. As much as I think support group is great, a tangible place where parents could go to for longer period of time than an hour a month, would be so much freaking better. Add it to my list of big dreams. It seems so obvious to me and I don’t understand why it doesn’t already exist. I guess it’s because Dr. Jo hasn’t done it yet and she is the only one fit for this job. Someday, I promise this is going to be a reality and I will do whatever I can to help her with this.

I have to run today, Ro baby. I have an interview in a few minutes. I miss you. I love you. I hope you are safe. Thanks for the rain last night.

xoxo

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32 Comments

  1. Stephie

     /  March 8, 2013

    Everybody please remember to VOTE VOTE VOTE for Rockstar Ronan at http://www.arizonafoothillsmagazine.com/battle-of-the-blogs/show_subcat/1.html
    I will literally vote until my fingers falls off. I’m sorry but a stupid fashion blog CANNOT beat a blog with the most deserving cause. As Maya always says, awareness=funding=cures.
    GO Rolovers and vote :) we need to reestablish our 2k lead. Ronan deserves this, all the little kiddies deserve this. <3 it's open until 15/04 and you can vote unlimited amount of times xx

    Reply
  2. Jenn

     /  March 8, 2013

    Maya…I’m so sorry. I’m so sorry there aren’t enough places that care for parents with dead children. I can’t understand why there aren’t either. I think you will make that change, and help all parents in need. I’m sorry you have to feel this horrific pain.

    Reply
  3. Gramma

     /  March 8, 2013

    Sending so much love, so many tears, and an abundance of hope that Dr. Jo’s dream will be a reality soon after yours.

    Reply
  4. Dear Maya,

    It’s hard to accept bereaved parents because it’s hard to accept that everything we do to try to control our lives is just a sham. I don’t have a dead child, but I have had things happen (which I will not go into–because you’re pregnant) which made very clear to me just how much of an illusion it is to expect that things will work out, how ultimately we are not in control of any of it. It’s fucking scary. Where you are right now — in terms of having to live your life without Ronan — is my absolute nightmare. Not everyone wants to look that in the face and I suspect that that’s the root of the lack of attention and funding for pediatric cancers. We are scared. As a society, as parents. We’re cowards. I am a coward. But I hear you. I’m listening.

    Reply
  5. Dani

     /  March 8, 2013

    You are amazing, Maya. No truer words have ever been spoken. You have wonderful dreams and I know you are more than able to get them done. You have been inspiring me for so long. Keep going, mama. You are a badass!!

    Reply
  6. Glenda

     /  March 8, 2013

    RoMama,

    Last night I had a dream with Ronan. I was on top of a tree falling and he was down below with his arms extended wide. I saw his beautiful face and jumped. (crazy I know)

    I woke up to rain this morning and thought instantly of you and Ro!

    I hope today is a little better day for you. Always my hopes for you.
    Hope you and Poppy are well!
    Thinking of you and Rockstar Ro
    Always RoLove
    #mayasmafia

    xo

    Reply
  7. Noah's grandma

     /  March 8, 2013

    Maya, Maya…love & huge hugs to you & gratitude for going to group. It meant a lot to Sarah & RaeAnn to “just be” with you.
    XONoah’s grandma
    Sign me up to work on Jo’s place !

    Reply
  8. Amy

     /  March 8, 2013

    I’ve always wondered why bereaved parents don’t get more support. I knew a woman who lost her baby due to stillbirth and there was basically nothing for her. Yet people who choose to ruin their lives by drinking themselves to death have a place to turn with love and support (I do understand that this is not the case for everyone). That seems so unfair.

    Reply
  9. Rachel Brusseau

     /  March 8, 2013

    Oh Maya my heart is breaking for you. Thank you for sharing your thoughts and feelings. It is creating awareness, and I hope it helps a little for you to have a venue to express what you are going through. I don’t have money, but I have a voice and I can continue to spread the word about the murderer neuroblastoma. Love Rachel in Washington State.

    Reply
  10. Tracy

     /  March 8, 2013

    My Dream …. To open a Grief House in memory and honor of my husband . It will be a center for hope and healing for those that have lost a loved one through death. Support groups….. Widowed, Parents, Sibllings, Children who have lost a parent… Education classes, out reach to educate the public, groups for those trying to help someone on their grief journey , yoga, I want it to be a safe haven that people can just drop in if they need to. Ideas swirling in my head , selling a house to fund the project . I need a village to help with the process…. PEOPLE willing to walk the talk and help. My passion is to educate the public about grief and to help people in their journey … We really do need to meet

    Reply
  11. You always teach me so much…I have grief that never ends over friends who died much too soon…and it’s not at all the same level of losing a child. I will forever be wiser with your words with people who lose children and really anyone. The world needs to be kinder, broader and kinder. I don’t understand why everyone wants everyone else to go into this fake plastic…everthing is fine…bubble all the time. Feeling our emotions — even the sad and mad ones is so much better for us in the long run. Thanks for always reminding me what it’s all about and reminding me to be kind to those in my life.

    Reply
  12. <3. That's all. Just <3. Keep being you bc we love you and all you stand for. I read a quote once that said, "Every calling is great when greatly pursued." – Oliver Wendell Holmes. When you are ready to pursue this, just let us know! We are listening and ready when you are. xo

    Reply
  13. caroline poole

     /  March 8, 2013

    i am listening! you are not alone! i have a little boy named ronin who turns 4 this may. please know that i hug and kiss him EXTRA TIGHT out of rolove. and please know that i work really, really hard not to lose my temper with him over silly things (or anything) because i realize i am just so lucky to be with him, every day that i have him. your ronan’s death has made my ronin’s life a little bit better, because i try very hard to appreciate what i have now. please know i’ll do whatever i can to help build a sanctuary for bereaved parents. i appreciate your bravery, your grief, and your voice. you and ronan are amazing!

    Reply
  14. Sending you lots of love!! I saw a stuffed animal set of Star Wars characters yesterday and thought of you and Ro and smiled….

    Reply
  15. Veronica Delcid

     /  March 8, 2013

    That’s actually a really good idea! They do need to make more places for grieving parents to go. Especially Mommys.

    Reply
  16. Liz

     /  March 8, 2013

    A place for grieving parents? what a bright idea! I didn’t go to support groups because it was to hard, I tried 2 times but I couldn’t even talk and like you, I was expecting a baby so I didn’t want to put her thru that. I was so depressed but when I went to see a doctor they said it was just normal sadness. No one could understand my feelings, everyone thought I should have been over “it” a month latter, shit, it’s been 22 years and I’m not over “it” yet and I never will, that was a piece of my heart that I lost.

    Reply
  17. Maya my little girl and I are praying for Poppy’s safe arrival and for her to bring lots of happiness to you and your family.I am blown away by your amazingly wise words and I absolutely adore little Ronan and I wish for you to have him back every single day. Am so sorry for your loss. Your family is in our hearts xx

    Reply
  18. Lisa

     /  March 8, 2013

    Hi, Love reading your blog, agree totally. Lost my son 16 weeks ago to Rhabdomyoscoma, back in that world were I don’t want to be, where he isn’t. xx

    Reply
  19. Chelsea

     /  March 8, 2013

    Maya, If it were anyone else who wanted to open a neuroblastoma center and help Dr Jo with her dream, I admit I would probably think it was unrealistic. But I know that you will do it, I have absolutely no doubts. You and Ro are already moving mountains!!!! Please let all of us know how we can help at every step along the way.

    Reply
  20. Isabella

     /  March 8, 2013

    The reason there’s not a whole lot out there for grieving parents is because children used to die all the time from diseases that there are now vaccines and/or treatments for. When every house in the neighborhood had lost a child or two, the community was the support system. Medicine has helped kids (in America at least) stay healthy and grow up, the children that die are now the exceptions, not the rule. Society hasn’t changed to reflect that, yet.
    Harriet Beecher Stowe lost her favorite child to cholera, and she likely got the 1800’s equivalent of “You have to live for your other children” (she had 7). She turned the pain of losing her Charley into Uncle Tom’s Cabin, a book which opened America’s eyes to the horrors of slavery and helped strengthen the abolitionist cause, leading to the Civil War and the end of slavery in the US. It’s not too hard to imagine Maya’s book will open America’s eyes to the horrors of pediatric cancer, leading to great change. Obviously cancer treatments will change, but perhaps she’ll also spur a change in recognizing and respecting grief.
    Oh, and AA doesn’t cure people of their addiction, just helps them learn to live sober. A recovering addict who assures you they are all better is headed for a relapse.

    Reply
  21. Shamrock09

     /  March 8, 2013

    Maya you once wrote in a blog “life’s No way to treat an animal!”

    Feeling exactly like this tonigh!!!

    In Ireland today we buried a 3 year old girl , her father drowned her and him! Just Si sad I can’t begin to think how her mother is feeling!!! God lifes a mother fucker of a bitch!!!

    Also seen an interview today of a mother in Ireland whos little girl has leukaemia and faces 3 years of aggressive treatment ahead of her!! My daughter is the same age as hers (3) and I can’t fathom how you cope with that, I suppose you just do!!! She has 80% survival chance!!! But that’s just not good ebough in this day and age stop the bloody spending on weapons and cure this disgusting illness!!!!!!

    Sorry in foul humour tonight thinking of all these things!!!

    Love you maya, and LOVE ed sheeran too!!!

    Xxxxxxxxx

    Reply
  22. Val S.

     /  March 8, 2013

    Maya, I have no idea how you feel; grieving for a child gone and scared for the one soon to be born. No one can fix that, ever. Yet, maybe you can devote part of the center(to be built) for the parents bereaved of their children, on the idea of a place to go daily or longer, rather than just once a month. You and Dr, Jo can do that. Hugs to you, so sorry you are so sad and frightened. Xo

    Reply
  23. I think the center you speak of is a wonderful idea, and you are right, why doesn’t it exist yet? I hope someday it will become a reality. Just like the Care Center. I send you love and strength and hope – thinking of your beautiful Ronan – wishing all of you well.

    Reply
  24. Maya, You & Dr Jo are right. I have not lost a child but I thought there was a place for Family that has lost a child. I know you have a lot on your plate but I think There should be the initial stay/visit, a monthly visit and a yearly week long reunion/stay respice. I don’t know what the correct terminology would be. I have a special son and sometimes I would like those breaks from daily care to feel normal. I think being with others in the same situation you would feel more like your new normal. I personally can only take so much of a regular mom (A Mom that does not have any special needs kids) mostly because I got to get back to my son and they complain that they are so busy because their kid is in alot of activity’s and I think to myself shut the hell up my kid is ten and can’t talk, use a toilet or a spoon. I want to scream, just shut the F Up. I know they are just talking about their normal life. But it pisses me off because I had wanted my son to be normal, have a normal life, but that is not what I have. (Sorry I can Blab alot.) I guess what I am saying is I see where you need to be with people who truely understand and live in the same knowledge you do. You wanted Ronan to have a normal life and instead he got some m fing pain and suffering followed by death. It is bullshit! You no longer have that normal life you once had. It’s hard to feel comfortable around everyone who has no Idea how you feel. I couldn’t even imagine someone complaining about be busy driving their child around and the fact is they should shut up because you will never be able to drive Ronan to all of his activities.I think it’s a great idea to have a place to just be you! Poppy has to be just great, She has to be. When I first started to read your blog a few weeks ago I felt horrible until I read you were pregnant. I felt the calm, the peace and the hope that everybody needs to have and you need the hope, you are carrying the hope with you! Lots of Love, Wendi

    Reply
  25. I think it is hard to know what you can do for bereaved parents…do you leave them alone, do you pop over just to see how they are? And there lies another problem- because no one wants to talk about it, no one knows what to do. This needs to stop being brushed aside- it’s a big issue.
    I think the centre for bereaved parents is a beautiful idea…and if Dr Jo has anything to do with it, it will be pure gold.

    Reply
  26. Poppy is not going to be born dead….that won’t happen. Your little Poppy girl will be just fine, I mean, she has her very own Angel to guide her all the way.
    I say this from experience from losing my own son when he was born too soon. Two years after I lost him almost to the day….Miss Haley was born weighing just under 4 pounds but perfectly healthy.
    There was no doubt in my mind that my son Johnny was there that day, looking over his little sister just as Ronan will be looking after his.

    I am so happy that you are having a little girl soon, she will help heal your heart because Ronan is a part of her and you will feel that as soon as you hold her in your arms.
    When I first held Haley, I felt so overwhelmed with emotion on so many levels but the emotions were good and I didn’t expect that. I was scared before having her, scared of losing her of course but equally as scared of losing him, if that makes sense. Anytime I would think about feeling any kind of joy after my son died, I would feel guilty, like how could I be happy ever again with him gone? I didn’t want his memory to fade with a new baby, like that could happen…nope.

    What I learned during Haley’s birth is that it is ok to happy again, to feel love, to give it. To laugh and to have fun again. My little boy taught me that because when his sister was born, it all became so perfectly clear…it just flooded me and the tears just fell and everyone in the room could feel it too, it was almost as if she arrived with a message….and I heard it.

    Haley is 7 years old now and she knows of he brother, we talk about him and she has this connection with him and it may sound like I am a crazy person but I am not. The connection is there, he is always with her. She remembers his Birthday every year before I do, it’s wild.
    When she was four, she walked into the room while I was looking at some of his belongings, I had tears in my eyes and she walked in and gave me a big hug and then looked right at me and said “It’s ok Mommy, he just went home”.

    We believe in God and all but we have never been church going people….I have no idea where that could have come from so I figure it came from her heart and from that little boy who loves her so.

    Sorry for the length of this but I had to share this with you….Please just hold on….sometimes we just can’t see what is around that corner for us. Just keep moving along and you will get there. Your heart is so real, you are such a great mother and you will find joy once again and Ronan will be a part of it all.

    Much love and respect,

    Jennifer

    Reply
  27. Cambria Beuchert

     /  March 9, 2013

    Maya,

    Thank you for making me aware of childhood cancer, and for helping to open my eyes a little more.

    I was having my second surgery for melanoma when I found out I was pregnant with my son. This is around the same time I found your blog. He is six months old now. Luckily we are both ok. Although my ordeal was relatively small, I had similar worries about his birth, that you are having about Poppy. You have helped me by sharing your experience. No man is an island.

    Thank you for opening my eyes, helping me to see what really matters, and giving us opportunities to help childhood cancer research.

    You are in my prayers. Thank you for your strength.

    Cambria Salt Lake City

    Reply
  28. I’ll work in either one of those – the hospital or the JoRo clinic. :)

    Reply

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