Is an o.k. day going to be as good as it gets?



Ronan. It was an o.k. day without you. I had to work for it though. I had to work hard to make it that way and as much as I didn’t want to, I did. I spent the day with your brothers and our cousins. We went to breakfast this morning and then the 4 boys ran off to the Rec Center to play basketball. As we were walking back to get the boys changed, I looked back to make sure we had everyone with us. I almost said out loud, “Where is Ronan?” But I caught myself before those words came out of  my mouth. I so expected to see you running behind all of us. I sat out at the pool with Stacy and her little troops while the boys played basketball. It was weird sitting there in the sun and not having anyone to worry about or take care of. Gosh, a year ago…. this would have been paradise to me. Laying in the sun, headphones on, a book to read, and time to just be peaceful with myself. Today, I hated every second of it. I wanted nothing more but to be worrying about you in the water, to be watching you running around, and splashing about. I would have been so happy to have had the privilege to wrap you up in your little towel after you had gotten out of the cold water. To have held you close to warm you up and then I would have taken you up to our room for your lunch and nap time. We would have napped together like we always used to do. Instead, I watched my dear friend, Stacy, do all these things with her 3-year-old, Kennedy. She is such a little firecracker and reminds me so much of you. She had a total meltdown at the pool which I of course thought was adorable. It was a combination of being hungry, tired and a newly 3 year old. She came and laid down on the lawn chair next to me and put her little head down. I went over to her and rubbed her back for a long time and she calmed down and let me do this to her for about 20 minutes. She then popped up and was fine. It was so sweet but it still hurt. I wanted it to be you that I was comforting, but the fact that Kennedy is slowly letting me into her little world feels good to me. We spent the rest of the day at the pool and I then took your brothers, Jake and Carter over to the grocery store to cash in the recycling bottles that they have saved up. They get 5 cents a bottle and were so excited about it. We took a garbage bag full of bottles over to Vons and I think they ended up getting about 3 dollars out of it. It was important to them and I think a very good life lesson to learn about taking care of our environment and responsibility. They were so excited and happy to spend their money at the vending machines at our condo. All of us adults have been laughing over the 4 boys and their obsession with the vending machine here. It’s as if they have never seen one in their life. They live for meeting up there and spending their change. Such little things but so important to boys who are growing up way too fast. Watching how independent Liam and Quinn are becoming is hard for me. The fact that they are starting to not need me so much anymore because they are big enough to go down to the vending machine alone feels strange. I’m so not used to having things this way. I feel like in the blink of an eye, they have become little men. In more ways than one and unfortunately a lot of that comes from losing you. It’s not fair and it’s not right. I don’t want them to ever feel like they have been robbed of their childhood which is why I am trying to encourage them to be boys and  to learn, explore, make mistakes, but also learn right from wrong. They both have such good heads on their shoulders but when they do things like take a stick and put it up a vending machine to get candy out, and then run to tell me about it, I’m not going to get mad. I want them to be boys in every way possible. Just as long as they also learn there are consequences, but honesty will also go a long way in this family. This is all stuff you should be learning too, Ronan. Your brothers would have been the best teachers to you. I’m sorry everyday of my life for them and for you. I will love them so much more because of your absence. Even though it feels like I have a connection to nothing or anyone, I know it will slowly come back with them. It is days like today that give me that hope.

We had Stacy and her kids over for dinner. Afterwords, we drove over to Pinkberry for Frozen yogurt. I had an unexpected feeling of happiness wash over me when I went to cross the street with Stacy’s little girl, Kennedy, and she grabbed on to my hand and we ran across the street together, with our hands intertwined. It reminded me of you. I sat and watched her devour her frozen yogurt and thought about how much the two of you would have loved each other. I had a flash of seeing you two together and the mischief you would have caused. I ached for it so badly. She loves Liam and Quinn and I know she would have been crazy about you. You two would have been two peas in a pod. After our frozen yogurt, Stacy dropped us off and Liam and Quinn were pretty tired. They fell asleep fairly quickly, almost before I could even tuck them in and we said our good nights to you. They are both so tired from their day of swimming, basketball, and playing in the sun. They miss their cousins who left to go back to Phoenix today already. The good news is, there is a new set of cousins who arrived today so I have no doubt they will be just as entertained.

I ended my night with a phone call from my friend, Doriet. I know you remember her little girl, Esther, who passed away just six days before you. We had a good talk tonight and both seem to be in a similar place; struggling a lot but we both know we have to go on. She had the same kind of connection with her little girl that I had with you. One so strong and deep that you cannot even explain it. You two were such similar souls and I feel that way about her mom and I. We loved the two of you so deeply that is was almost not human. This is one of the reasons I know that we have such a special connection. I think about Doriet everyday and Esther too. I hope you two have found each other and are playing away. Doriet says Esther leaves her signs everywhere. She knows Esther is still with her much like the same way I know you are still with me. I want to go back out to New York maybe in the fall to spend some time with her. I want to go back out to take a picture of you to Dr. Kushner and make him look me in the eyes. I want him to acknowledge the way he handled us was not right in the end. I’m going to lose it if I don’t get to close that chapter in your journey. I really wanted to run in the Marathon for Fred’s Team in NYC next year, but I am so pissed that I don’t even know if I can support his cause. How can I support a man who could so easily just brush you off. I don’t care if people tell me to just let this go because I’m not going to. Parents who have just been told the news that I had to be told, deserve more than that. I don’t care if this doesn’t change him or the way he does things, but he is still going to hear me. I need to know that a fraction of him cared and is human, otherwise I am going to forever think we made a mistake in letting him treat you. Maybe he wasn’t worthy of caring for you, maybe it should have been Dr. Mosse all along at Chop. Fuck me. I told Fernanda the second I met Dr. Mosse that it was her,  that she was going to be the one to save you. It was my gut feeling. But then we decided to go with Dr. Kushner because he said he would do whatever it took to save you. He convinced us. Well, he didn’t. He threw us away like an old rag and this will never sit well with me. I’m pretty sure, no matter what road we chose, your outcome would have been the same. At least that is what I tell myself to get though the day. At the end of the day, your dad and I had to pretty much navigate your treatment ourselves and we did the best we could. It should not be this way. We are not fucking doctors. The fact is, there is no cure when there should be. It’s a matter of luck and you got the short end of the stick my baby. I’m sorry a million times over. I’m sorry for you and my heart breaks daily for Doriet. I love her and I know how badly she is hurting because I am right there with her. It’s not fair and it’s not right. When the time is right, I will go and be with her and we can grieve together because that is one of the bonds we have and it is too strong to let it go. It needs to be done for the two of you and for the both of us.

I love you, Ronan. I’m tired tonight and I miss you so much. I will sleep with you in my heart as I do every night as I cuddle up to your blanket. Thank you for helping me to have an o.k. day today. I really needed it. G’nite my sweet, beautiful boy.



15 thoughts on “Is an o.k. day going to be as good as it gets?”

  1. Maya,

    Wishing you more ok days and hopefully some good days soon after. My heart aches for you daily! You are an inspiration…keep up the fight!


  2. Sweet dreams Maya. Hope you get to see Rockstar Ro in your dreams. Baby steps. One foot in front of the other. Soak in the love of Quinn and Liam. To the moon and back! Hugs mama bear! My heart aches for you. Thinking of you and Ro! Xx

  3. Maya,
    Thank you, for being honest, for being real, and for having such a beautiful boy to make me realize just how special my two kiddos are. Reading what you write about him makes me think the world was robbed of such a extraordinary person. I am new here, but I revisit quite often and I can’t seem to get you or your struggle off my mind. Anyway, as I was driving home from work thinking about your precious little guy I heard this song on the radio and thought I would share. I am sure you have heard of it before, but its called Smile, by Uncle Kracker. I wish for you and your family all the best.

  4. One day at a time. Baby steps. Try to enjoy those beautiful boys. Our love to your entire family

  5. So glad to hear you had an ok day. It may be just one but thats a good sign Maya. Dont feel guilty, not even for a second. Thats why your signs are coming all the time. Ronan wants you to be ok, just as you would want for him and the boys if you were in his place. Loved the strangers letter. It rings so true.

  6. If you can have an OK day with all that has happened, you’re even stronger than you thought you were. We all believe in you and your family and are wishing you many more ‘OK’ days to come, with better than OK to follow when it’s time.

  7. so glad you had an “okay” day, it’s a start! Also wonderful that you have Doriet, what a blessing to have someone to share with who knows exactly how you feel and what you’re going through! God bless your day today, always in my thoughts and prayers Maya!!

  8. and don’t ever blame yourself or the choices you made for Ronan! You did all that you could possibly do to save him!! Believe in that!!

  9. Rock on Ms. Maya…. I will see you this summer. I hope you allow me to buy your Starbucks some morning, and then some. You’ve done so much for so many. And your power is just beginning. Going with the thought that Ronan is with you, in you, and heaven is already here, just imagine what the two of you will accomplish. Awe inspiring doesn’t even begin to describe…

    Much love –

  10. I feel for you every moment of every day. I know as a parent you always question and second guess every choice you make, I couldn’t even imagine having to make choices regarding cancer and your baby especially with no concrete answers out there from any doctor. I’m so sorry Maya. Soak up all the love you can from your boys, family, friends, and the world who have fallen in love with you and your baby boy. Enjoy san diego a much as you can at this time, coronado is beautiful! and I hope more ok days come your way, god knows the world owes you that.

  11. You have every right to feel the way you do about Dr. K, he treated you & Ronan so horribly. Does he treat all patients like that? If so I don’t know how he can look at himself in the mirror. I just hope he reads your blog or someone tells him about it. How dare he do that to Ronan. I don’t think you need to just “let it go” like some have suggested. I’m sure they just have your best interest at heart. HE and HE alone is making you question if you did the right thing for Ronan. No one should make you feel like that. You did more for that angel baby than I thought humanly possible and you DID make the right choices. I think you deserve him to look you in the eye and apologize for making promises he couldn’t keep. Not the promises about saving Ro, he is not God, but the promises of treating your family with dignity & respect. If he can not do this than I have no idea, no matter how brilliant he may be, why anyone would want him on their staff.
    Glad you had an OK day & please continue to know how much you & Ro have helped others.
    Love to you and Woody, Liam & Quinn.
    P.S soak up the cool weather because it’s Hot as shit here today!

  12. Maya, I really feel that you and Ronan are changing this world we live in. Thank you for your honesty, and letting us all love you and your family. I tell every one I can about Ronan, and his fight. The word will get out…maybe soon we will see little yellow ribbons on everything, for Ronan and all the rest of the beautiful children that deserve to beat this awful cancer!!

    I hope today is an “ok” day for you also. I hope you are able to just love on your boys…..and feel Ronans messages. I know with all of my heart that he is with you, and that’s no bullshit!!

    Lots of love from San Diego!!

    Sara M.

    Ps: that poem just broke my heart, I am just so sorry for what you are going through.

  13. You are such an inspiration~ I have a totally new outlook on being a mom. You’ve taught me not to take one moment for granted. I think of you and Ronan daily. Keep on keeping on..<3
    Love from one mom to another,

  14. I’m sti catching up but I’m reading them all. Maybe you’ll never see this but I wanted to tell you I love your happy pics at the end of your blog posts. They make my heart smile.

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