Day: April 4, 2011

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

 

 

 

Welcome back, hospital insomnia

Beeping machines. Check. Headache. Check. Cold hospital room. Check. Missing Woody. Check. Hospital insomnia back. Check. Check. Check. Where does this leave me? Miserable. With a foggy head. I really, really, tried to go to sleep without my sleepy meds tonight, because I thought I left them at the RMH. I’ve lain awake for 3 freaking hours now. Tossing. Turning. Had a slight panic attack and thought I couldn’t breathe. It was only out of sheer terror and desperation that I dug though another overnight bag and thank the lord, found my Ambien. Waiting for it to kick in and trying to ignore the little voices in the back of my head saying they can’t believe I have to take prescription meds to go to sleep. STFU. Nothing to feel guilty about… but was all so foreign to me, until now. I gag taking Advil. Never in my life had I had to take medication to sleep. Sleep always came so easily and peacefully to me. Guess that changes when your child gets cancer. At least it has for me. Everything has changed.

I tossed and turned and sat and over-analyzed everything like I always do. I worried myself into a panic about a friend who is flying back to Phoenix tonight. I told him I needed to know he was safe so I could sleep better. I texted Woody to let me know when he arrived to Phoenix because I needed to know that he and Quinn were safe. I sat and obsessed over these things tonight for I cannot take something else happening to the people I love. Now, I will sit here and obsess over my mom getting into New York safely and hoping that she easily finds her way to the RMH. She’s never been to New York and I can tell she is nervous. I wish I could be there to meet her but all I can do is sit and wait for her to call so I know she’s o.k. I worry a lot when I don’t sleep and my overactive imagination goes into full effect. Then there’s the damn beep beep of Ronan’s fucking pole again. I have to get up, buzz the nurse, and say, “We’re beeping!” I’ve done this only 5 times tonight. Awesomeness. I much prefer my coma induced state of sleep that I was able to have the past few nights while I slept at the RMH with Quinn. My little blue friends better start working soon or I am going to be a zombie tomorrow and I hate being that way. I was so looking forward to some nice time with my mom and Ronan… do not want grumpy Maya to make an appearance. Nobody likes her.

Our roommate is really sick. So sick that I can’t sleep because I am so sad for him. He has a very rare form of brain cancer. He has a big bump on his head from it and can’t really talk or move. He is a little younger than Ronan, with the most beautiful face and the longest eyelashes. His parents are such good parents too. You can tell that they are as in love with each other as they are their son who is fighting so desperately hard for his little life. They sit and play memory and other games with him all day, but he gets tired easily. Today, he slept the entire day and has thrown up on and off. I wish I had a magic wand to make him all better. If love could fix the problem, he would be healed because the way his mom loves him is one of the most beautiful things I’ve ever seen in my life. She is a very good mom. And you all know I have high standards. It takes a lot for me to call another mom a good mom, and this lady should win mama of the year. Her patience, love, and kindness for her child makes me smile. It gives me hope that he is going to be fine; just like Ronan.

You know how I know Ronan is going to be fine?? Because of my insight. And because of the very insightful people who I surround myself with and they know it too. Like Mr. Sparkly Eyes, who I was texting a couple of days ago after I was having a bad day and I told him I just needed to hear him tell me that everything was going to be o.k. He responded with “I do believe Ro will overcome this.” He wouldn’t just say this to me if he didn’t feel it or believe in it. Same with Fernanda. She has great insight to things and told me this morning that she has no doubt that Ronan is going to be o.k… and she will watch him grow up into a beautiful teenager. There is something about the two of them that I trust and believe in what they are saying 110%. They are my Ronan whispers. I don’t see Ronan not surviving this and maybe I’m biased because he’s my child and maybe this is the way every mother feels when facing this situation…. but I don’t know. I just have such a strong sense that these hard and scary times are going to be worth it because in the end, he will still be here; where he belongs which is on this earth doing amazing things. Woody and I both know it is going to take a lot of work to get our son back, but we both do not doubt that it will happen and we are in the best place where they are going to make sure it happens. I have an inner peace about this. I trust my insights, my gut, the flashes of things I get that pertain to my life. TRUSTTRUSTTRUST. This is all happening for a very good reason. A huge mother-fucking rainbow at the end of the storm!!!!!!!!!

Holla!!! New York better be prepared! Miss Macy is coming for a visit!!!!! I’m so excited! She just sent me a text saying she will be here April 14-17th. I have the most amazing friends that refuse to let me be here alone and are filling in for Woody when he is gone. Trish has her ticket booked, Fernanda is coming, Niki, Stacy, Tiffany, and I have a whole line-up of people who are dying to come out next to help. I love my friends so much. I don’t know what I would do without them.

Alright. Officially getting tired due to my “friends” starting to work. Thank GOD for Ambien. Nighty Night peeps!