19 months and I hate cancer


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Ronan. I woke up today, not knowing the date. Then I got the little reminder of my phone that simply says, “Ronan. I miss you.” It comes up the 9th of every month because sometimes my scattered mind forgets what day of the week it even is. I didn’t have a danger day, like I used to on the 9th of every month. I miss those. I’m far too pregnant and tired to do anything dangerous so my danger days have been put on hold. I did finally get my manicure though. I decided today I would get a Captain Rex manicure just for you. So I had my fingers painted blue and silver, just like your favorite Star Wars guy. I missed you a lot today, but that is true of every day since you left here. I still cannot believe it’s been 19 months.

I did a lot of nothing today as I just wanted to make it through the day and I did. I ran some errands, took a nap, cleaned out my closet, got all the laundry done and put away. Very exciting things. I have a busy week and I am hoping goes by fast. I just want to be out of here and off to Washington soon. I need a break from this place and some fresh air. I’m tired of the sun.

Teddy’s mom sent me a text today and told me a hummingbird came to visit Teddy in his window today. I still think of you every time a hummingbird appears. I think you came to visit Teddy today to tell him that you will take good care of him. I so wish it wasn’t this way. For the both of us. I don’t want Teddy’s mom to know what any of this is like. She said Teddy is doing alright. They have him on morphine patches. I had a flashback of you having to wear those. I remember how soon they started doing nothing for your pain because the cancer just started eating away at your little body. I cry about this a lot. I wish I could have felt the pain, instead of you. I still don’t understand how everything got so out of control, so quickly. It was like in the blink of an eye, you were hurting so much. I’m so sorry I couldn’t fix you, Ronan. I’m so sorry for all of this.

I don’t have much more to say tonight. I am far too tired and too sad, to write much more. I know you and Teddy are going to be great friends. I just wish it were down here, on earth with us and not somewhere else. You two don’t belong anywhere else. Fuck you cancer. I hate you. But I love you, Ronan. I love you to the moon and back, forever and always. I hope you are safe. Sweet dreams, my spicy monkey boy.

xoxo

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16 thoughts on “19 months and I hate cancer

  1. Kristine Hall

    Maya,
    I hate that Ronan isn’t here. I hate fucking cancer and I hate the pain that you feel everyday. It’s just so unfair. I think about all these sick mothers that kill their children because they don’t want to take care of them, and then you have parents that are so devastated that their child is sick that they would gladly swap places in a heartbeat and die to let their child live…this world we live in is so warped and crazy. I too hope that your lil spicy monkey is safe and in a place where only happiness exists. I’m off to bed…hugs to you, Woody, the twins and lil Poppy.

  2. Kodiak My Little Grizzly

    I have to tell you I have family in AZ… We are coming to a CHARGE syndrome conference next summer… hottest time of year… I hate HOT weather… Anyway, today we had snow… LOTS and LOTS of snow… I have photos of it on my blog… If you want to look at it… NO sun… clouds, snow and my older ones even took their little Deaf Blind brother down the hill on a sled…
    You could come up to WI and MN now… we have over a foot of snow. I know you want to get a way… I was just saying even if you don’t travel… look at the photos. I send our winter photos to family down their when they are enduring the heat. I know it really means nothing… Sometimes we all try to find a little way to help someone have just a little bit better day… even if it’s really so small. Just like I love my job, I love my family, but my kids? They are my life…. What I’ve been through I would not continue if it were not for them. It would snuff me right out. I will continue to help tell others to come and look at your blog read about the kids like Ronan and Teddy. Even though I can’t because everything goes to my DeafBlind kid… my little CHARGER.
    Thanks for telling your feelings…

  3. becface723

    I know this is a hard day for you and not many people can understand the pain you are feeling. I just wanted to let you know that last night my family took a trip to ikea and as soon as we walked in I said ” look a seal its a seal it reminds me of Ronan” and of course my family is looking at me like I’m crazy so I explain how it’s his foundations symbol since Ronan means seal. The seals were all throughout the store and right when we left I noticed there was a huge donation bin for kids who have to stay at the house for pediatric patients at the national institute of health in Bethesda. It was clear so you could see the toys and most of the toys donated were seals. I just thought this may be a small sign from Ronan. Even though I never had the honor of meeting him he has changed my life. I live with several chronic illnesses but look at the world differently after hearing your family’s story. I am making a pretty big donation to Hopkins childlife this holiday season after learning from your story to never make those meaningless things more important than things that really matter. I will be giving meaningless items for sick kids to play with but to kids who are sick those items are more than that as you know. Those items help kids get through tests and procedures and long nights in the hospital. Anyways I just wanted to share my ikea story in hopes it would make you smile. ❤

  4. Ali B

    I can’t believe it’s been 19 months…it just doesn’t seem possible. I wish more than anything in the world that this wasn’t your reality…that this wasn’t Teddy’s reality…that this wasn’t ANYone’s reality. Because it’s fucking bullshit.

  5. Bluejellybeans

    I’m so sorry Maya! You are right, life sucks, children are ment to be playing, at school, laughing…not in hospitals or graves. Is so unfair that you and other moms are living in this situation… I have nothing more to say but FUCK YOU CANCER!!
    Love,
    Giovanna

  6. Carin Bloomfield

    Maya, I just wanted to let you know that even on these hardest of days in the hardest of seasons, you are doing so much good for so many.

    I read your blog all the time, and it makes me so angry that Ronan had to go through this and your family has to still be in so much pain. I try to honor Ronan and all the other children dying from this fucking disease any way I can, but mostly by being grateful for my children. I hug them a little tighter and a little longer constantly ( I think I may be driving them nuts!) but I am sooo incredibly grateful for their health and happiness.

    My father died of cancer, and it was a friggin nightmare, so to see your child go through it, well, unimaginable. I want to tell you Thank you for this blog, hopefully if we all donate to chidhood cancer awareness or even talk about it more, the whole world, not just the white house will be colored in gold next September! And maybe not too far away their will be more and more treatments available and soon the end of childhood cancer!

    Thank you Maya, for giving me perspective on what is truly important, what happened to Ronan fucking sucks..period. But you have opened a lot of eyes, you should be proud of yourself.

    Carin

  7. ...

    OMG you break my heart…..we lost our 9 year old grandson. His birthday was 9th of dec and the anniversary of his death is dec 20th. Our hearts are breaking every day and nothing changes it. I want to take your hurt away I want to bring all the kids back home to their families. Nothing eases the pain……His parents are lost, so hard to visit them and have such a void in the family. Nothing will ever be the same again. So sad for you. Dakota and Ronan have met I feel lsure of that.

  8. Alysa

    As you I hate the 9th of every month… My mom was taken by the same beast, that caused her to have a heart attach the 9th she gained her wings… Every 9th no matter what month it is sucks ass… Thoughts and prayers with you!!!

    XoXx

  9. omi1998

    Maya..
    at the beginnig i didn’t even know who was RONAN!! but three months ago i heared taylor swift song about you’re kid!! it was very emotional!! i cried for 10 hours!! i really liked you’re child and i lovced him!! in every word of the song i feeled you’re tears and you’re pain!! i’m just 14 years old so i don’t really know the pain of loosing a child, i can only imagine!! i hear people that it’s the wost thing in the worl ( like my mom say) at the first time i felt a deep connection with the song, and after that i started to search you’re son name in google and youtube until that i found you’re blog, it’s amazing that you give all the time for you blog so you can talk to you’re child!! i believe that he can hear and feel your happiness and you’re sadness so just keep talking to him and don’t stop!! that while make you feel better!!

  10. Emma

    It’s just so unfair that Ro can’t be with you … you’r right cancer sucks !
    Your so strong and Ronan is proud of you, I’m shure !
    Take care of you, thanks for all
    Love you and Ronan … to the moon and back !

  11. Kris

    Dear Maya,

    I do not know if you ever read your comments but if you do, I would like to tell you I think you are amazing, you will be one of the main reasons they figure out how to cure childhood cancer…
    I learned of your blog from my 14 yo daughter named Taylor! :)… she loves everything Taylor swift,the first song she learned to play on her guitar was “mine” until it had an unfortunate accident, her baby sister broke the neck :(.. anyway she heard the song Ronan and found out if you buy it on I tunes the money is donated!
    Everytime my mom comes for a visit , she buys the kids something, well Taylor wanted an Itunes card, so mom bought her a $50.00 one, then she proceeded to use her card to buy everyone she knew with an iphone or ipod that song! yep all 50.00 of it.. I hope every little penny helps toward your fight to rid the world of fucking childhood cancer…xoxo

  12. Catherine Wallace

    Hi Maya 🙂 I just thought I’d share with you that I completely understand that the 9th will always be engraved in your memory, my very best friend lost her baby when we were just 17 and I never thought I would actually hear someone’s heart breaking and how the pain just becomes a palpable part of them and 2 years on I still cry myself sleep on this date so I can’t even imagine how you are getting by each day with such a burden of grief. But honestly Ronan(beautiful gaelic name <3) would be so proud and your influence has reached all the way to Ireland which btw rains like 90% of the time incase you feel like making a move 🙂 p.s. FUCK YOU MOTHERFUCKING CANCER!!

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