Tag: rules

Scrambled Eggies and a Fucking AIMS Test

 

 

Ronan. The weekend is over. I guess it was busy. It’s late now but I actually just got home. This weekend went a little something like this… A baseball game. Dropped your brothers off for a sleep over at a friends. Your daddy looks at me as to say now what? Because another date night of me staring across a table at him, sobbing so hard that I cannot eat and I will blow my fucking brains out. Luckily, we had made some kind of sort of let’s do something with Danielle and Dave, plans. We went to dinner. We caught up. We went bowling. I may have sucked really bad the first game. I may have gotten the high score the second game and redeemed myself. I may have smiled. I still felt sad, but it’s good to be with friends like Danielle and Dave. They are easy. They both love you. Sunday, your daddy went into the office. I picked up your brothers. We all then went to this place called Mike’s Big Breakfast for lunch. Oh, how you would have loved it. This was all I could think of the entire time we were there. I think Liam ate 10 pieces of bacon. And pancakes. We sat at the bar. Everyone smiled at us. It felt weird to me. I wanted to scream out, “Hey! No smiling allowed! We are not the happy family that we may look like! Don’t you know our Ronan is missing? Don’t you know our Ronan is gone? I just want him back! Why isn’t anyone bringing him back?!! But this food is really fucking good.” And I don’t even really like food anymore, so that’s saying a lot. Unless it comes in the form of Airhead Extremes Candy. Or Coke. I will love those two things, forever. Your brothers went over to a friends’ house later Sunday for another play date. It’s good for them and helps out over here so much. I can use the break and so can your daddy from the constant parenting that we are always doing. Parenting that is so exhausting when you are constantly dealing with this pain and grief. Your daddy asked what I wanted to do. It was so sunshiny and nice out. Shiny mother fucking people everywhere. Put me in a dark room please and let’s watch “The Girl with the Dragon Tattoo.” That’s what we did. I had already seen it. Your daddy had not and I knew it was right up his alley. It was while watching this movie, that I found out about our little friend, Jaiel. The 16-year-old girl that I had told Rita about around a month or two ago, who was fighting Neuroblastoma. The girl that was the reason that we decided to go to the anti bullying press conference that Nicole Stanton had because Jai had posted something about how it was nice to know that people who you thought were your friends, really were not because they were all just waiting for you to die. Her post ripped my heart out. She is 16 and she is dealing with real life in the most horrific way. She does not have normal you are so fucking lucky to only have a boyfriend breaking up with you problem, to cry about. This girl was fighting for her life. Something that  so many people, take for granted.

Somebody posted something on Facebook saying she had passed away yesterday. Impossible, I thought to myself. I had just been messaging back and forth with her a week or so ago. She had just had another surgery, so she could continue to fight. I thought she was doing o.k. I should have known better. Because I know first hand, how evil and unpredictable this disease can be. I sat in my bed, in shock. Your brothers came home soon after that. I had to keep it together for the sake of them. Your daddy asked if I wanted to play outside with them. “No,” I quietly said. I would not. I played catch out in the parking lot today of Matt’s Big Breakfast. That’s enough for today. That’s all I can do, for today. Unless Ronan is there too. Then I would like to play. You were not. So I left. I went for a very dangerous, night hike instead. But before my little hike, this is what I did. I parked. I sat in the car and sobbed. I sobbed for Jai. I remember thinking to myself poor Jai. And her parents. I cannot imagine what they are feeling. I cannot imagine what it feels like, to be them. Then I had visions of your little face, your little voice, your little lips and how lucky I was to be able to have all of those things. But then I remembered that you are dead. I had forgotten. My head started spinning and I thought I am never going to see him, again. At least not in this life. How is that even possible? How can this even be real? I bolted out of my car. Luckily, I had decided to wear my FUCK YOU YOU FUCKING FUCK tee-shirt while hiking up the mountain today. I do not think my fellow hikers appreciated it very much. The amount of dirty looks I got was actually quite humorous. Quite a few people gave me dirty looks. I gave them dirty looks back while the black tears poured down my cheeks. I’m pretty sure I looked mad. Like in a Mom’s Gone Mad sort of way. I’m pretty sure I didn’t really fucking care today. I am glad nobody said anything out loud to me because I might have punched them. Maybe not punched, because I don’t do physical violence, but I totally would have assaulted them with my middle finger instead.

I came home and your daddy just looked at me. I had snuck out of the house without him seeing what tee-shirt I was wearing. Score 1 for secret operation ninja Maya plan. Score 0 for OH MY GOD NO YOU DID NOT WEAR THAT Woody. I did. And I’m not sorry. Cancer can be sorry, for killing my child. And this is how I feel about cancer, so I’m wearing it. Plus Jai died. And all of these babes are dying, so yeah, fuckyouyoufuckingfuck, was appropriate. I don’t care who says otherwise.

This is what Quinn said to me about 10 times today. “Mom. We have an AIMS test tomorrow. Can you cook us a really good breakfast??”

“Ummm…. of course I can, Quinny.I will cook it and you will do awesome on your test.”

He asked me this, about 5 more times tonight.

I thought to myself, don’t I always cook a good breakfast before school? Then I remembered that no. No I do not. I used to. I used to ALWAYS cook a good breakfast for all of you. Your eggies. Your scrambled eggies. Bacon. Sasauge. The works. I would feed you all, scoop you up in your P.J.’s and throw you in the car. We would drop your brothers off at school and come back home to play for the rest of the day. Now eggies only really happen, on the weekends. During the week, it’s every man for himself here is some cereal and shove some yogurt down your throat if we have time. Eggies pretty much kill me, without having you to feed them too. Tomorrow, I will cook eggies on about the 4 hours of sleep I am going to get tonight. Tomorrow, I will get up extra early to cook the eggies without you. I already hate tomorrow.

This is the other conversation that has gone on for months now. May. May consists of telling your daddy, I think we need to go away.  I do not think it would be a good idea for us to be here, in May. Your daddy wants to know, where I want to go. China. Thailand. Vietnam. Australia. I think it may be a little late for those places. I don’t think I can plan a trip like that. I cannot make a decision to save my life. Why can’t I plan a freaking trip? What is wrong with me? This is easy! Turns out, it’s not so easy. I think I am having major mental block out May issues. If you block out May, it won’t come. It’s coming. I cannot be in Arizona for it. East Coast. I think it’s going to be an East Coast trip. I told your daddy this tonight. Maine? Boston? All of it? “Whatever you want,” was his reply. Just please plan it. Fuck. A plan? How can I plan this let’s get the fuck out of here, because Ronan’s 1 year of everything is coming up??? Because if I do not, I know what will happen. And it is not good.

I tucked your sweet brothers in tonight and sent Rita a text. “Hey. Do you have HBO? I do not. And “Girls,” is premiring on HBO.” It’s our fairy RoMo’s good friends show. I don’t watch T.V. but I did tonight due to Rita’s response  that she did indeed have HBO and she lives close by. We sat and watched, laughed, and LOVED it. I stayed over there late. We talked about May. She has been trying to help me make a decision for weeks now. I’ve been ignoring her. I thought she was going to fly off the couch with happiness when I said, “I’m thinking East Coast…” She seemed to think that was great idea. Maybe tomorrow will be the day that I can make your daddy proud, by figuring this shit out. Maybe tomorrow is already here and it looks bleak. We shall see.

Eggies to cook in the morning, Ro. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

I just want to be home

Am I staring in Bill Murry’s movie, “Groundhog Day?” That’s what the days feel like around here. I texted Woody today and said is it Thursday or Friday today? I had no clue what day it was. I ran home to shower and repack my bag, hit up the grocery store for Ro, then headed back to PCH. Today I’m depressed, tired, and sad. Hospital living at it’s finest. I just spent the past 30 minutes staring out the window at all of the cars on the freeway, wishing I was the one with somewhere to go, with not a care in the world. I had a mini breakdown this afternoon, tears and all. Thanks to my sweet Mrs. Sangria😉 for being on the other end of the phone for me and listening to me as I was a blubbering mess. I’m better now. But that as we know, can all change in an instant.

Ronan’s ANC is still not coming up. He looks great, but they are not letting us out of here until his counts start to rise. I’ve asked everybody. I told my friend Bethany tonight that I was about to throw Ro in a duffel bag and smuggle him out of here. She offered to be my get away driver;) That’s a true friend right there. So we just sit and wait. I asked why couldn’t we just go home and keep Ronan on lockdown there. I know the reason why, it’s obvious hospital policy and rules…. but wouldn’t he be safer at home without all the hospital germs floating around?? Makes sense to me, but I know these rules can’t be broken. So, I will sit and wait while listening as my 5 month old roommate, who has cancer, gets the spit suctioned out of his mouth because he can’t swallow on his own. I will sit and wait as this little baby has to be at the hospital all alone for days because his mom is at work.  I will sit and listen to him cry and struggle to breathe and watch as the nurses try to take the place of his mom for the time being. I will sit and listen to Ronan cry that he just wants to go home because he misses his brothers so much. I will sit and wait and be patient and comforting to my son because that is what he deserves. I will sit and be thankful too. Thankful that I can be here with Ronan, thankful that I don’t have to work and leave my son alone. I have to find the silver lining in all of this somewhere. On the inside, I feel empty, tired, and numb. I want this all to go away; now.

Today was spent keeping Ronan busy and his mind off of being in the hospital. We sat in his bed and played Star Wars and watched movies. We broke out this adorable “finger ink” book that some mystery person dropped off the other day… as well as a bag full of other goodies. Still don’t know who this was but thank you again:) We sat and pressed our fingers on the ink pads and made silly pictures. Ronan then decided to dot my nose with a the color green. Well, that led to bigger and better things and before I knew it, I had inked his entire head and face  all orange and made him look like a pumpkin. He inked my face purple and green. We were laughing the entire time and thankfully, the ink was really easy to wash off. Messy but very well worth it. Being in a hospital so much you have to get crazy sometimes. That was our crazy for the day; and we had a blast.

Short and sweet tonight because that’s all I can do. Hopefully tomorrow we will see a rise in Ro’s immune system counts. PLEASE. Love you all. Sweet dreams.

xoxo