The knot


The knot in the pit of my stomach is back and stronger than ever. So bad, that I am convinced I have an ulcer. I spent most of the day trying to get things done, while begin doubled up in pain. I also had to hang up the phone with my mom because I couldn’t even finish our phone conversation due to having to throw up. You see, it’s not enough that my child has cancer. At least before now, he was acting like it was not affecting him at all. It is now. I watch him as he favors the left side of his body more than his right, as he winces as I pick him up and tells me not to hurt him, as he keeps his little right arm stiff by his side because it hurts to use it. It’s not an effect from the chemo…. it is pain related to the Neuroblastoma eating away at his body. The MIBG scan showed a lot of activity in his right shoulder still. I’m convinced this is why he is now in a lot of pain. He won’t tell me though. I’ve asked him 50 times today and he refuses to tell me he is hurting. That is how stubborn and strong he is. This is why he will beat this fucking disease. No matter how hard it’s going to be; he is not going to give into the pain.

Try watching your 3-year-old suffer this way while feeling helpless as FUCK. Try to go on while acting as normal as possible, like every second of your day is not filled with excruciating pain. I cannot even go into the details of tonight but I will just tell you as I was sitting on the bathroom floor with my husband I just wanted to crumble up and die. He is hurting as badly as I am, even though he is trying so hard to be strong. I’m tired of being strong and I’m tired of watching him try to be strong. Nobody is strong enough for this shit. Don’t get me wrong, we can both put on a good show but at the root of all of this is pain beyond belief. I don’t even know how I made it through today. I was a zombie and ended up at my Tricia Boo’s house pretty much broken beyond repair. I sat with my friend and she watched and listened as I tried to put my feelings into words and she tried to fix the things that I told her were wrong. Nobody can fix this. The truth of it is, the damage is beyond repair at this point. Unless somebody were to magically heal Ronan overnight, I will live with this pain for the rest of my life. I don’t know how much more I can take. Somebody throw me a freaking bone already and give us some good news. I cannot stand to watch Ronan hurt while knowing I can’t fix it. I am sick to my stomach thinking about all the active cancer cells in his body just eating away at him and causing him pain. How can something so evil be going on in his sweet little body? I will never understand this. It is so cruel horrific. This isn’t a freaking ear infection or a broken arm. Oh, what I wouldn’t give for that.

We got home late last night. I feel like I’ve been run over by a truck. Ronan is happy, in spite of his pain. Nothing makes him happier than being at home. We have to go back to New York sooner than expected. We have to be back by March 17th. I need more time. Time with my twins, time at home, time to wrap things up before we go away for god knows how long. We have to get Ronan back to New York asap to start the high dose chemo as well as the NK Cell trial.

I’ve got to get in the right mind frame for New York. I know once I get there, I will take it by storm. But it is going to be hard to leave here. Mostly leaving my twins behind. My heart is literally ripped into shreds. I know they are in the best hands in the world, but that does not make this any easier. But we have no choice. We have to get Ronan better and New York is are only chance. I cannot believe New York Miss Macy is not there anymore. I am beyond sad about that. Tricia told me I had to find a clone of her that lives there. I’ll be accepting applications via email. Yeah right. Impossible. There is only ONE New York Miss Macy in this entire world. My little ray of sunshine is gone and I wonder how I will survive.

Time for bed my peeps. Tomorrow will be better. Tomorrow Ronan will wake up and not be in pain. Please. Please. Please. I can deal with him having cancer as long as I don’t have to watch him act like he does. I can’t take the physical signs…. it is more than I can stand.

Sweet dreams, my lovelies.

xoxo

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11 thoughts on “The knot

  1. sonia

    you have to take care of yourself too. don’t let yourself suffer because you think it’s right or going to make ronan feel any better because you’re suffering. you need to be healthy too to be there for ronan. hope you’re pain (at least the physical) goes away soon.

    thinking of you and your family daily!

  2. K.M.

    Wow, this stupid disease is the biggest bunch of bullshit. How dare it do this to Ronan. I can not even stand to hear about it, so can not imagine how you live it. Stay mad and fight this mother f<(£er until it is looses and Ronan wins! We pray and think about Ronan all the time. Posts like tonights make us realize why it's important, he needs all of his fans to be thinking of him, praying for him and ultimately helping him heal. Remember the luck of the Irish is real, kinda ironic your going to NYC on March 17th! That has got to be a good sign! Hang in there warrior Mama!

  3. Rita Dickinson

    I’m back in town and have plenty of time so please call me if you need paperwork managed, grocery shopping, ANYTHING! Rita 602.616.4032

  4. Marquita Ward

    Dear Lord come quickly and heal this brokenness. Bring Your Holy Spirit to comfort Your beloved. Show Your glory and mercy and bring healing. Bring this in the form You choose. Jesus, You are our healer and You are to be trusted. Holy Spirit bring endurance, rebuild faith..Father God Your arm is not too short…neither is Your memory as Your Son suffered for us..show Your mercy…in Jesus name amen.

  5. cynthia

    Maya
    You are needing some hard physical activity, a hard massage, and some accupressure from a talented theripist. and let Ronan have a soothing patsage with you at the same time, hug, kiss and sleep together. three to four times a week together and if your other children feel need let Dad do the same at home with them. This sould take two hours to do. Pray together and let each other see this, so the kids and you are feeling it is O.K. to exspress this with each other. Decompress is good as a family activity. Most of the out- side world will never understand this pain. They do not have to, so do small steps and keep things looking fun, smelling beautiful, smile at your boys even if you do not feel like it, change the mood by changing small things like music, art, cheering other on. Small steps, ver small steps, inbetween the hell.
    Breath deep often and teach the kids to do the same for one min.
    Cry do not drink, it is O.K. for the kids to see this sometimes so they can. Then dance, run, get the music going so the kids can get happy nutty and silly happy after a cry. Change from the sadness. It is never easy.
    Your OK this is normal for what you are going though just move into small steps of Happy for you and them.

  6. Denise Kivela

    again we must all pray for this sweet little soul that God will take away his pain and heal him from this horrible Cancer!!Then after we all pray for him we must BELIEVE!!!!And TRUST!!!!Trust that God will do what he says he will.Thats the tough part,but we can all do it!!

  7. Nori Vial

    Maya~
    I remember the first time I saw Ronan! We were walking the kids into Pre-K at Sequoya-he is such a BEAM of light. You are absolutely right when you say he is different! He is! He will beat all odds. We are praying for you, sending positive thoughts your way, crossing our fingers, basically doing EVERYTHING we can to help Ronan fight his fight!!!
    Much Love~
    Nori

  8. Mary D

    Maya – statistics are based on the past, and everyday Sloan is changing the future. Look at the website you just posted “Band of Parents” – how many angels were there in 2010 compared to prior years?…..1….why? .because the finest minds in the world are on the case and up for the challenge. Don’t lose faith – the cure is there – Ronan’s purpose in life is to be the poster boy for the cure because those poster boys have to be rockstar gorgeous.

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