Goodbye little eyelashes, until we meet again


My mamacita made it safe and sound. She showed up to the hospital around 10 a.m. EST, and I didn’t even have to give her directions. Ronan decided last night that he did not want her to come. He kept saying he didn’t want to see anybody except for: Me, Woody, Liam and Quinn. When my mom arrived, he screamed his head off. She waited in the hall for a good 20  minutes before he would even let her into the room. After about an hour, he started playing guns with her and warmed up to his Nana. He is so territorial since all of this has happened. Makes it difficult to leave him with other people because the mom guilt kicks in. After Ronan settled down, it was time to go down to RT. We sent my mom out to pick up sandwiches nearby and Ronan sat in the wheelchair while our escort took us downstairs. I walked and carried his toy guns in one hand, and held his little hand in the other. He insisted on holding my hand the entire way downstairs. I told him it was like we were on a date. He laughed and nodded his little head. When we arrived to RT, we waited for our friends to come out and get us. Ronan was very excited to shoot them all with his new gun that his roommate gave him. They are all very good at playing along. As I put Ronan on the radiation table today, his little eyes were watering non-stop and he was saying they hurt. I looked down to see a bunch of his eyelashes had fallen out and they were in his eyes. I kept trying to wipe them out, but the more I tried, the more they continued to fall out. It almost become to much for me to see. My baby, lying on the table waiting for his radiation, with his eyelashes falling out once again due to the chemo. It was all very surreal to me. After I cleaned out his eyes, I left him for his 2nd to last day of his treatment. Once again, it only took a few minutes and I watched my baby hold perfectly still on the screen while “The Killers,” played in the background. I fought back the tears and won today. Victory.

Once we were finished with RT, we went back up to our room and Ronan actually let me leave to go back to the RMH to shower while my mom stayed with him. I walked back, dropped off my things and changed into my running clothes. I ran my 8 mile loop but it felt like 14. Even the amazing weather couldn’t push me through today. I was tired and feeling it. Running in Central Park sure is different during the day than night. I tried not to get too sad about all the little kids playing on the playground, knowing that Ronan was sitting in a hospital bed…. but I couldn’t help it… it kind of ruined my run. I totally prefer my dark and scary night runs to all the shiny happy people that have taken over Central Park during the day. It stings and it was a constant slap in my face today and I wasn’t able to get my mind off of the fact that Ronan has cancer. I use my runs as an escape from things….. the day run did not do the trick. Lesson learned.

Once I finished up, I showered and headed back to Sloan. I found Ronan asleep and a very tired Nana. She didn’t sleep much last night so I sent her on her way so she could get tucked in for the evening. Ronan has been pretty feisty this evening. Telling me things like he is mad at me, he doesn’t like his nurse here and only wants his nurse back home, Sharon, to take care of him. He also told me he wants “A,” Kristen, and Dr. Maze to move here to take care of him. Made me sad. Made me even more sad when he told me he was never going to see his brothers again. Poor little man. He doesn’t understand any of this… all he knows is he has to be separated from the people he loves most and he doesn’t know why. Breaks my heart everyday.

We spent tonight playing in his bed. Again. His ANC is still at 0. I think this is the longest he’s went with an ANC of 0 for so long. I just want to take him home. He’s mad tonight. He’s been throwing things at me and telling me he hates me and wants a new mom. My almost 4-year-old has the attitude of a teenager. Can’t blame the kid. All I can do is tell him what he is saying is hurting my feelings and he needs to think about the words he is using. I know he doesn’t mean it. He is just frustrated with everything in his life right now. He finally calmed down, told me he was sorry and he loves me. He spent the rest of the night being sweet as pie.

Hope you all are having a good evening. Thanks for checking in with us. G’nite my lovely friends!!

xoxo

P.S. Made it through the day without any tears. Until now. I love you, Suz. You know you will always have a piece of my heart, no matter how far away you are.

Dear Mama,

It was so good to hear your voice today.  I miss you more than you know.  You seem so far away from me…..and you are.  I’m sorry that I never know the right things to say on the phone.  I feel like there is so much I’m not doing for you and it’s killing me.  I’m not writing this email so that’s you’ll reassure me of anything. I just want you to know that if my thoughts of you guys could be documented and emailed everyday….you would be inundated with messages.  I think about you and Ro and the boys and Woo 50 times a day.  I truly do.  I HATE every bit of this.  I HATE that I’m not closer.  I HATE that I don’t know how to help.   I HATE that I don’t get to talk to you about silly things anymore.  I HATE that Ro can’t play in Central Park while you snap pictures of him staring at you with those gorgeous baby blues.  I HATE that you and Woody are in two different states.  I HATE ALL OF THIS AND I’M SO SORRY that I can’t wave a wand and make him better.  All I can do is pray.  I pray so hard for him Maya and I know that everyone else does too.  It will work.  I have turned to God my entire life and I know he answers prayers.  Izzie and Jude and I pray at night now too.  It goes like this:
Me-  “Dear God, please protect Izzie and Jude.”
Izzie-  “Amen.”
Me-  “Dear God, please watch over all the children in the world.”
Izzie- “Amen.”
Me- “Dear God, please let us all have sweet dreams while we sleep.”
Izzie- “Amen.”
Me- “Dear God, please take Ronan’s cancer away.”
Izzie- “Amen.”
Izzie- “Goodnight God.  Goodnight Jesus.  Goodnight Amen.”
This is every night for us.  We will keep praying Maya and I will keep thinking about you all the time.
I love you so much,
Susie

 

 

 

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12 thoughts on “Goodbye little eyelashes, until we meet again

  1. Ananda Dasi Nicole Billa

    I am so sorry. I wish I could make it all go away. I can say nothing except that I have a son who had cancer and went through treatment and it was horrible in a way that is unimaginable if you have not been through it. You are taking good care of Ronan and your other sons and your husband and your self. Your tears will help keep you sane and strong. May God’s love be with you, always. Your biggest strength is in your heart and your ability to keep loving through all the pain.

  2. Margie Solberg

    Maya-I am Tiffany Berwind’s mother and she has been so moved by your family and what you all are going through, that I had to look at your blog and meet this family that has touched her so much. I have read it all and I can’t believe what a strong and courageous family you are. I will pray for little Ronan and pray for you to stay strong and positive. Our prayers and love are being sent to you from Montana!

  3. Michelle Hobbs

    Hi Maya~ You are a such an amazing, strong (even when you don’t think so) mom…I’ve said it before but Ronan is so blessed to have you by his side. Good lesson on the central park run…I can only imagine how hard it is too see people going about their lives with what looks like not a care in the world, while you are just taking a much needed break from hospital land. Continuing to hold you in prayer…xo

  4. Meg

    Just checking in on you and beautiful little man losing his eyelashes. You are so strong, Maya, don’t ever forget it. Some day this is going to feel like a dream to you and Ronan and your family.
    Sending so much love, prayers, good happy thoughts and positive energy your way.

  5. Marquita Ward

    Dear Jesus please bring this family more reasons to rejoice. Bring them all through this with Your victory Jesus!

  6. Jen Benedict

    My Grandmother told me once that every Mother gets their heart broken by their child’s words and that the heartbreak happens because our children know they can say anything to us and we will still love them the same if not more. I know it has to hurt badly to have Ronan throw that anger and frustration your way but i’m sure he does it because he knows his mommy will never get mad and walk away and his trust in you allows him an outlet for all of what he is feeling and it is YOU his mother that gives him such a wonderful gift and that’s unconditional Love. This little boy has more integrity then some of the adults I have met in life and he has become an inspiration to many for his ability to triumph and to Love. Have to end with telling you once again what an amazing job you are doing fighting this evil called Cancer. Keep on fighting the good fight and tell Ronan the whole world Loves him and is sending prayers that he will get to see his brothers soon.

  7. hiddenblessing

    Maya, I find you to be such an inspiration – your strength, your honesty, your love for your little one. I pray nightly for Ronan, as I know that thousands others out there do.

    I have a question for you – where do you find your pictures that you put in your postings? I think they are so great, and I’d love to put some on my own blog, but I have no idea where to find them!!

    Love and blessings being sent to all of you tonight.

  8. cynthia

    When he acts like that he may want someone else to hurt or to see you are hurting like him. If you control cry for him, he may even laugh, but this is only a reaction to him always being the one. You should take the hit, if you can and let him for the moment let out his frustration, it may let him be closer and he can be brave for you for a moment. I saw this alot with my child when things got hard. I let her even pinch me and I cryed with her at needle time, but I was not hurt I only wanted her to see even I hurt. She would laugh and I would cry to see her laugh. She was going through it all not me really.
    It was a small price to pay to see her see me getting what she did. Hang it there Maya, he is as you are apart of wanting to be anywhere but there.

  9. Anna

    Dear Maya- Though we have never met, I am praying for your sweet Ronan and your entire family. You are such a strong person and amazing mother. You have been blessed with a beautiful family that god will keep together for many years to come. Sending prayers your way from Florida- Anna J.

  10. Mary

    No heart breaks harder than a mother’s who watches her child in pain. And nobody fights harder than mamas..Every mother out here puts herself in your shoes when she hears your words and even though you can’t see us there is any army standing along side you, pulling for you, praying for you and sending love your way. Stay strong,

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