Salt on an open wound


 

 

Ronan. Life goes on. One thing I am learning, is no matter what happens in life, it goes on. I hate this. I want everything and everyone around me to just stop. It’s apparent that this is not going to happen. I had no choice but to wake up today. It happens to me every morning, over and over again. Like groundhogs day. I woke up to the sunny sky and the ocean breeze. I told your daddy that we should go to The Hash House for breakfast. Do you remember when we went there a couple of summers ago? I think you had just turned 2. You were at that age where you would never sit still, but I somehow managed to keep you entertained as we enjoyed our breakfast. My friend, Kelly, took us with her husband and little girl, Gracie. Seems so long ago, Ro. But it wasn’t. I sat on a bench this morning, while we waited for a table. There was a mom sitting right next to me with her baby girl who was just 6 weeks old. I didn’t even know what to feel. Normally, I would have been all over this mom and sweet, new baby girl. Instead, I sat there quietly and tried to ignore her. Today, I felt a mix of jealousy, sadness, and emptiness. I thought about you when you were that little and what a gorgeous baby boy you were. I wished I could turn back time to have you all over again, as a baby, even if it still meant you ended up dying of cancer. I would do everything we just went though with you, all over again in a heartbeat. I don’t care how hard it was; at least you were still here. At least I still got to look into your big blue eyes and hear your little voice. I can never have those moments back now because some asshole named cancer has stolen them from me. I still can’t believe you are gone. I still cannot believe things like this happen in this day in age, especially to kids. Especially to you.

After the Hash House, we ran some errands. We then came back here and had a kind of lazy day. I took a nap with Quinn and your Daddy worked while Liam played on the iPad. It was a quiet day. The days I hate the most. We went over to Mimi and Papa’s condo for dinner. Liam is sleeping over there and Quinn is here with us. I can tell he is missing you so much. We watched some videos of you on my computer tonight from when you were about a year old. You made Quinn laugh like no other. He laughed so hard tonight as you Β were up to your usual mischief and Quinn was your favorite target. He loved all the trouble you used to cause so much. I never thought I would complain about having boys that are so well behaved, but I am going to tonight. I miss your trouble making ways and the way you and Quinn would cause it together. Now, Quinny has nobody to cause mischief with as you know Liam is such a little rule follower and gentle soul. I cannot describe to you the absence you have left in all of our hearts Ronan. It’s like a whole new life. I life none of us ever dreamed of or wanted. A whole new, unwelcomed life where we have to struggle everyday to fill our days with something to make us smile. Today, we smiled over talking about you. Today, we cried about missing you too though. Those things seem to go hand and hand.

Tomorrow. Tomorrow, I actually have something to look forward to. Mimi and Papa are taking Liam and Quinn to Legoland which they are so excited about. Your daddy and I are going to drive to Laguna to meet up with Denise from Fore, Axel & Hudson. She is part of the amazing company who sent you all of your adorable hats and clothes. I have wanted to meet her for so long and we have been trying to coordinate meeting up. I can’t wait to give her the biggest hug for you. I need you to be with me tomorrow, baby. I cannot do this without you. As much as I am so excited to meet her and to tell her thank you in person, it is going to be hard not having you with me. I used to dream of the day that we could both meet her together, after we had gotten you all better. Your daddy is going with me so I will have him there to hold my hand. We will watch for your little signs all day tomorrow to know that you are with us. It will be the first time in a long time that your daddy and I have spent alone; just the two of us. I hope I’m not a wreck; it is hard for it to be just the two of us. Hard for me because I know your daddy is hurting just as badly as I am so it is like looking at myself, in a mirror, with my heart ripped out of my chest. The two of us together, alone, Ronan. It is just plain sad. The times that it is just the two of us, we basically just sit around, stare at each other and cry. I look in his eyes, and I see your eyes. Someday, I hope this will make me happy. But as of now, it’s like pouring salt on an open wound. Too much pain, everywhere.

I ended tonight by turning on the T.V. which I rarely to anymore. A movie, that I used to love, “Life as a House,” was on. Oye Vey. Bad idea to watch that movie. So good, but so sad. And of course it has to do with cancer. It was like a bad car accident though. I couldn’t stop watching or turn it off. I ended up bawling my eyes out. Cancer is just awful all around which is why things have to change. We are on to something though. That event for you, The Brightest Star in the Sky, that was put together in just a few weeks, raised 50k for you foundation, Ronan. 50K! I can you believe that?!?!?! I am still in shock and I am already hoping to turn this into an annual event. Think of all the awareness we are going to raise! My friend, Carolyn, said it was because of my words and your eyes that the event was such a success. I think she’s on to something. I’ve got a message to get out there and your beauty is going to help me do it. I was talking to Mr. Sparkly eyes today and you know how he is with his words. They always hit me hard. Today, he called me powerful. I laughed out loud at that, because I have never thought of myself this way. But after thinking about it, I feel like being powerful is something that I know I can be because I do have the passion and you on my side. I will use my power to make people aware of Neuroblastoma. Something most people have never even heard of. I am going to use my “power” in such a positive way and make such an impact. I have no choice. You will forever be my inspiration, my hero, my role model in life. You have changed me forever. Thank you, little man.

I’m going to snuggle up to your brother and your blanket, GiGi. Miss you so much, Ro. Sweet dreams. Come and cuddle with me tonight. I love you.

xoxo

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35 thoughts on “Salt on an open wound

  1. Glenda

    Maya, stay strong. You and Woody need each other more than anything. You both know the pain the other is feeling. I hope tomorrow you hold each other up. Enjoy Laguna and the sun! Beautiful Rockstar Ro! Love the pictures of all of your boys. All 4 of them! Peace and strength! Hope Ro comes snuggle up in your sweet dreams. To the moon and back! XO

  2. Hisham

    Maya –
    Congratulations on the big night for Ronan’s foundation! It is breathtaking and heartwarming to see a community come together for a common cause – moved to action by your words and the story of Ronan’s life. And your friend is right, you are powerful — and you will be in a position to bring about awareness and affect change for those whose lives have been altered by this horrible disease. So thank you again for sharing Ronan’s and your family’s story with us. Your words are so heartwrenchingly honest that they move me to tears again and again. With every post you write, you capture the truth that there is nothing as powerful or pure in this world as a parent’s love for their child. Undying and limitless, it is the greatest expression of the human spirit that I know of.

  3. Mary

    Maya! Albertsons is asking everyone as they check out this month if they want to donate $1 to childhood cancer . Think about it,if all shoppers gave one dollar this month?! They give you a card to complete to hang on the wall, I will put ronan’s name on it to hang in the store where they will post all the cards. Tell all to shop at Albertsons this month! (I will look into it further, I believe the money goes to childhood cancer research at St Judes). Love, sister Mary

  4. Annie :)

    50K!!!!!!!!!!!!!!!!!!!!!!!!!!WooooHooooo GO RONAN GO!!!!!!!! wish we could get one of those goin in Washington πŸ™‚

  5. jenn

    Maya I wish I could say I was as strong as you after losing someone but after losing both my parents in a year and a half I completely stumbled and it took me a little while to regain myself.Cancer is such a horrible disease and I totally agree with the whole cancer needs to get cancer and die cause its taken to many wonderful beings. I love that you continue to write and be an inspiration to many. When your ready I as well as many will be here to join in your fight!! Sweet dreams and I hope Ronan visits you in your dreams!!!

  6. Lorna

    Wow Maya – 50 k ?!?!?
    How amazing are you and everybody that organized it and everybody who contributed. I’m stunned at that figure. Seriously!

    It’s just another sign that Ronan’s legacy is going to be world-changing.

    I don’t believe Ronan died for a higher cause. I just believe that was rotten stinking bad luck. BUT amazing things can from from this tragedy and although you’ll never be grateful it happened, I believe people the whole world over will be grateful for how you’ve dealt with it and they’ll be grateful because you’ve helped save their lives! I do think it’s the beginning of the end for cancer.

    Thank you Maya and sweet boy Ronan and also thanks to Liam and Quinn and Woody for enabling you to share it all with us.

  7. Therese in Ireland

    Still reading and crying for you all, every day. Every photo you post is more beautiful than the last, such a gorgeous family. Aren’t you blessed to have your lovely boys to live you and carry you through? They’re a credit to you Maya. I noticed that someone mentioned that there are fewer posts to you these days and I think it is because people don’t know what to say. I don’t think the words exist to be able to quantify your loss, I am just so sorry that it happened to Ronan. I’ve never seen a more beautiful child and I think you’re right, his wondrous beauty and you’re sheer determination will make a huge impact. Congratulations on the fantastic result with the recent fundraiser. Ronan is working his magic. Prayers and best wishes for comfort and peace for all of you.

  8. Lisa F

    Maya,
    You talk about wanting signs from your Rockstar Ronan….. I know he’s going to be with you tomorrow….you know how I know, I check in on you a couple of times every day to see how you are & to make sure you’re okay. Today, early afternoon Tuesday (Sydney, Australia) time I clicked on your blog at the exact same time as I was watching a movie……Groundhog Day! I am not kidding….
    I read the first paragraph of your post…..Your feelings of Groundhog Day & was stunned, your post had only just gone up!
    Your little man reaches far & wide, he never leaves your side. I really felt a connection to you today & sent you thoughts of love & peace, hope you got them. You are in my thoughts regularly.
    Lisa xxx

  9. Stefanie

    You at that beautiful baby! Those eyes make anyone listen and pay attention. You have the world on your side maya.

  10. Alyssa Crews

    It really is truly amazing how beautiful Ronan is. And his beauty is still everywhere. I hope today that Ronan holds your hand tight and fills up your heart with his little soul as you go to meet the lady that sent all his adorable clothes he loved. I know you will feel him all around you today. I really wish he was here with you, to touch and kiss. Have fun in Legoland Liam and Quinn! Believing always..
    Alyssa

  11. Jaime Harris

    He was so beautiful, love those new photos. You have certainly informed me of what Neuroblastoma is all about. I had never even heard about it before you and Ronan. That’s awesome 50k was raised! Wow! Great start! Praying for you and Woody today. Hope it goes well and you feel Ro with you both the whole time. Thinking of you daily and sending my prayers! So sorry for the pain you are feeling. I love that, “I wish cancer would get cancer and DIE”. Awesome. God bless you guys!!

  12. dawn

    50K….WOW! I shared with friends I thought it was over 30K. With all the wonderful silent auction items I am not surprised it got to 50K. I look forward to helping in any way that I can every year. I know you have tons and tons of people that would work beside you to make it the event you want.
    xoxo

  13. Kendra

    Just want you to know that even though the comments have dwindled, people are still listening. It’s because nobody knows what to say, which is probably for the best. There are no words. We can only reassure you that there are so many people you’ve never met and may never meet who are on your side and on Ronan’s side. My son likes to look at your pictures and videos with me when I read your blog and always asks if we can see “that cute funny boy with blue eyes” again. His favorite is the Twinkle Ronan slideshow. Your blog is making such a difference. We are all better mothers because of it, and rest assured that we are all out here telling the world about neuroblastoma and how people can get involved and help. Ronan will never ever be forgotten.

  14. An avid reader

    Maya,

    I know you are looking for a way to help spread the word about childhood cancer and perhaps I can help. Take a look at an organization called PCORI which was created to help patients, clinicians, purchasers and policy makers make better informed health decisions. PCORI will commission research that is responsive to the values and interests of patients and will provide patients and their caregivers with reliable, evidence-based information for the health care choices they face.

    They are holding meetings for public comment and stakeholder engagement. The next one is in Washington, DC in July. It will be held at the Westin Georgetown even though the website says TBD. You can request an opportunity to speak or to participate in the stakeholder event by going to the “contact us” section.

    I know you will do wonderful things through your foundation but it is also essential that Tier 1 research is devoted to finding a cure for rare diseases as well.

    I know there are no words that will offer you any comfort so…

    FUCK CANCER,
    An avid reader and cancer patient

  15. Alli Paolone

    There is a boy that lives in Vegas, his name is Corey Laplume, he is currently going through chemo. I just wanted to share with you that he has a “like” page on facebook called, “I wish cancer would get cancer and die”, also Kevin Hoyt from Vegas recovered from Cancer more recently and has a page, “It ain’t chemo” both are great sources of support and think you would enjoy following both. Thinking and praying of you and Ronan. πŸ™‚ So glad to have been part of the Brightest Star event. Can’t wait to see what next year has in store!!

  16. Dawn

    I haven’t stopped reading your blog since I came across it months ago. It is the first thing I do every morning. And I am so glad that you keep blogging and sharing pictures. It is my daily reminder not to take anything this life has to offer for granted, something I could never thank you enough for. I will always think and pray for you and your beautiful family that I have never met!

  17. Vivian Foster

    You ARE powerful! Your words are so raw, so moving. Like most that visit your page, we cry, we laugh, we get angry with what you are going through. I really wish someone would take your story and make a movie of it, then donate the proceeds to Ronan’s foundation. Ronan’s and your story is so compelling. You’re an amazing woman Maya.

  18. Patrice M

    I still feel your pain daily, Maya. But look at all the impact you and Ronan have made in less than a year. Wow. I attended The Biltmore event, and it was amazing. Amazing. So much love for you and Ronan there.
    You must know that as my friend and I were leaving the building, a hummingbird flew right in front of us. This was about 8pm, and I’ve never seen them out that late. OMG. It was incredible. I could only think that it was Ronan saying hello:)
    Peace to you and your family.

  19. Laura

    Hope you have a good visit today. I know the boys are going to have a fabulous time in Legoland, there is a special Star Wars section. You are doing great considering it has not even been a month…so proud of you, just keep taking baby steps forward.

  20. Leona

    50k!!! Now, aint that powerful!!!
    I LOVE Vivian’s suggestion of a movie and donating all proceeds, OMG, imagine!! I say let’s do it, somehow some way, lets do this.
    FUCK CANCER!

    Love to you today and everyday Maya,
    Leona XOX

  21. Meghan M

    thank you
    you are loved
    I miss Ro and I never even met him
    the event Friday was perfect, the music was pleasantly melancholy
    my song for your tonight is Tracy Chapman “The Promise”
    I hope Ro visits you in your dreams tonight

  22. J

    Ha I love that quote ” I wish Cancer got cancer and Died” !!! Never heard it and will never forget it πŸ™‚
    so real so true…That is the grandest wish of all. Let’s make it happen. Kudos on the BIG NIGHT!!

  23. Lindsay

    Maya you are on Fiyah! Mr. Sparkly eyes is completely right, you are powerful! Your words are wonderful; YOU should not be the one that has to console US, the ones who follow your blog religiously, but that is what you are doing each time you write one of these inspiring posts. Girl, you da best πŸ˜‰ Thank you for being you! PS I bet since Ronan is such an ASU fan he is celebrating the Lady Devil’s win right now πŸ™‚

  24. Alana

    I agree with a previous comment that even though the comments have dwindled, there are as many if not more reading your blogs and thinking of you all the time. I just don’t comment all the time. I continue to pray for you every day though.
    I’ve seen some comments that you should someday write a book because you are an awesome writer. I agree and I thought of a name for you book too…. FU Cancer! πŸ˜‰

  25. Erin Riek

    I love reading your blogs. It’s like I am wrapped up in this incredible book that I don’t want to put down and I’m so disappointed at the end of each post because I know I have to wait a whole day before I get to pick up where it left off. Someone had mentioned earlier about making a movie about your story and donating the profits to research on childhood cancer. I have always thought the same thing but a book instead. Most of it is already written and written beautifully.
    I am so amazed by how much money was raised in just one night…actually I’m not. There are so many hundreds and hundreds of people out there who care and love you and your family and want to help fight this war. I hope you felt peace today when meeting with Denise. K
    Keeping you all in my families thoughts and prayers.

  26. Erin Riek

    BTW Little Ro looks absolutely enchanting in the picture above. I also love the one of him on the beach following behind his big brother. It looks like he had just learned to walk. Maybe I’m wrong but my baby boy is just learning to walk and I have a couple snap shots of that same pose with his arms out helping to balance him. He is so precious!

  27. Katie

    I think about your Ronan throughout the day. I think about you and your family and how I am sincerely sorry for what you all are going through. I wish I could see you and cry with you. I find some sense of peace in looking at the pictures of your beautiful Ronan. His silly, loving, and fierce kiddo spirit just resonate from all of his photos. Your family’s love story is the greatest one I’ve ever come across and all of the most eloquent words in the English dictionary could not describe it…. I am blessed that you have shared it with us.

    I have two little ones who have never seen the ocean. When I see the pictures of your three boys enjoying life to fullest on the sandy beach it makes me want to take my own munchkins to experience that pure joy! I’ve decided to go through my “material” possessions and sell what I can so that I can earn enough money for a family vacation to the beach. For some reason, I am only now seriously realizing that none of us are guaranteed a tomorrow and that the laughter and love we share as a family is most important. As I am going through my garage and house full of stuff this evening I find myself wanting to cling on to things I don’t really need or love (it’s the hoarder in me, I’d like to thank my parents for that). Then I think of your baby and the pictures of him by the sea and everything changes.

    This week I am taking my mini loves to get shaved ice in Phoenix, something they have never had before . You and Ronan are such amazing examples of how to live life to the fullest even with something as simple as getting shaved ice. Sometimes I think it is the little things that make the biggest impact.

  28. Prissy

    Amazingly beautiful boy!!!!How could anyone look into those gorgeous eyes and not be touched by your story…As many mothers have already said and I will repeat- you make me want to be a better mom. I have 3 beautiful boys and reading your blogs has put our life into a new perspective.You are the most corageous woman I have ever heard of!!!!!

  29. Amy

    I LOVE that picture of Ronan and Quinn (I think it’s Quinn). That is the most adorable thing ever, but it also breaks my heart.

  30. Christi

    I’m so sorry you lost your little angel. Lawd, he was absolutely beautiful!
    I came across your site because I’ve been searching those that have lost a child since my brother, 22, committed suicide by hanging almost two months ago. My father found him in the shed out back. It’s not at all the same what happened to your innocent little boy; it’s just an awful thing what parents go through having lost one of their own. There’s nothing anyone can say or do to ease the pain they will feel forever now. It helps me when people tell me they are thinking of me and they are so sorry I lost my little brother. So here I am. I’m thinking of you, your family, and Ronan. I’m so sorry. I can tell (as a mother of a two-year-old myself) you are an awesome mom. Ronan will not be forgotten. May a cure to all childhood cancers be found and made available very soon! Hugs to you.

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