What makes a person just up and crack? Because I think if anyone is entitled to, it’s me.

 

 

Ronan. I woke up this morning to the awful news of the shooting that happened in Colorado, during the new Batman movie. WTF is going on in the world? My heart is heavy for all those people who lost their loved ones due to some senseless act of… I don’t even know what to call it. Senseless act of nonsense I guess. Or senseless act of fuckwad fuckery might be even better. What in the world must be going through someone’s mind, to do such a thing? Do they have a dead child? Are they so angry/hurt/sad/defeated/lost/broken and so full of extreme pain all day everyday that they finally just crack one day? Well I am. And to do such a thing would never even cross my freaking mind. I don’t think there is any reasoning behind this madness. A mental illness perhaps? I don’t see any other answer, but I guess we will just wait and see. All I know is that kid, made a fucking choice to hurt so many innocent people. And all for what? All for nothing. Why can’t people like this, get cancer and die before they have the time to plot and scheme to do such a thing. Why didn’t that kid get cancer and die instead of you? Yeah, I said it. Fucking asshole. I am glad he didn’t die. Do you know what I wish? Instead of letting him get off by putting him in some prison somewhere, let’s put him in his own private cell and hook him up to chemo treatments for the next 50 years of his life. Let’s put him through chemo, radiation, a stem cell transplant or two, over and over again. That would be the ultimate punishment, without a doubt.

Your brothers were dying to see the new Batman movie today. They knew what happened at the theatre, before I did. We had a long talk about it. I felt weird taking them to the movie… but I did. I still feel weird about it. How could I possibly sit in a theatre, to watch a movie when all these people’s lives have been shattered? It seemed morally wrong. I did it anyway. I don’t feel good about my choice… but it was one I made today, for the sake of your brothers and honestly, I wanted to get lost in the world of something else for a couple of hours. Movies aren’t easy for me to watch but today, I forced myself to sit through this one. I could not stop thinking about all the parent’s who will now know what it like to have a dead child. Something a parent should never have to know. I’m so sorry to all of them. I had a breakdown in the shower today, for all of them. I had a breakdown, much of the day. There were a lot of tears shed today. Sometimes I truly do think you were too beautiful for this ugly world. It is ugly, Ronan. Things like this unnecessary tragedy, proves it. There is not explaining or justifying this. It is unjustifiable, just like all these kids getting cancer and dying from it. Just like your death. No reason or answer for such things, will ever be good enough.

Today, I hung out with your Nana. I stayed at her cafe for a bit while she closed it up. I talked to the group of men that come in for their coffee, right before she closes. So sweet. They all know all about you. Everyone does. They all told me how proud you would be of me. One of them told me, he was worried about me, until he saw me in person. Because after seeing me, he knows that I am going to be alright. I wasn’t sure how to take that, but it made me smile. I told him thank you. That I was trying my best which was all I could do. A girl came into get some of your bracelets. You know how much I love meeting your little lovies. I went over to her and introduced myself. She was so sweet. We talked for a while. She was having a hard time, holding back her tears. It didn’t take long before we were both crying and I embraced this stranger, for a hug. I am always thankful how it seems that you are inspiring a whole world of people, who never even knew you. It truly does warm my heart.

Do you know that I miss you every second of every single day? That it makes me so sad during the times that I am teaching your brother really important things about life, that you are not here to take part in this too? Here are my examples for the day, Ronan. The 3 of us were driving in the car today. A super important life lesson was learned. We had the radio on, of course. That Quinn of your is so obsessed with music that it makes me smile. A Tom Petty song came on that he hadn’t heard before. I squealed with excitement. But he went to change the station. I quickly said, “Nooooo! You cannot change the station. It’s a Tom Petty song! Rule number one in the car, boys… NEVER CHANGE THE STATION WHEN A TOM PETTY SONG IS ON!” They both laughed. Stevie Nicks came on next so they were also schooled in the amazingness of her as well. Very important life lessons indeed. Here is my other funny story. I was playing the game Life with the two of them the other day. It came to my turn and I had to stop to get married. I looked at your brothers and said, “I’d like a wife, please.” They both giggled and Liam handed me a pink lady, to ride in my car with me. We continued to play and at one point, Liam knocked my car over and my little peeps fell out. Quinn goes, “Move, Liam! I’m trying to put mom’s wife back in the car!” I thought this was so cute, so funny, and so very sweet. I felt proud of your brothers who are being raised to learn that love comes in all forms and it does not matter your race, sexuality, or what anyone else thinks. It was a proud mama moment, to say the least. I am sorry you are not here to learn these things, too. Somedays, this still doesn’t feel real to me. A lot of days, I pretend that you are still here with us. It helps me to get though the days that still seem to drag on.

That was yesterday, Ro baby. Today was much of the same. We all slept in and played outside. Your brothers really wanted to go to Derrick’s baseball game tonight. The thought of this gave me major anxiety. A packed baseball game… lots of people…I don’t do well in crowds. I gave myself a big pep talk. “Come on, Maya. It means so much to Liam and Quinn. You can do this, for them.” I really did want to see Derrick play too. You would be so proud of him. He’s grown up so much that it kills me! I remember when that boy was your brothers age. Your brothers have always idolized him. You loved him, too. I’m sad you didn’t get to see his amazing catch that has been all over ESPN. He should have won that ESPY award; he was totally robbed. He had another great catch tonight that made me smile. Your brothers had the best time and I did alright myself. I sat in my little space surrounded by your brothers, Papa Jim, your Auntie Cindy, Uncle Tim and Derrick’s darling girlfriend. I missed you so much. You would have loved the game. You were always so crazy about baseball.

I might end this here, now. I’m sad. I’m tired. I miss your daddy. I miss you even more though. I always will. I will always miss you, more than anybody else in this whole big wide world. G’nite Ro baby. I love you. I hope you are safe. Sweet dreams.

xoxo

Overwhelmed, Insomnia, Anxiety and more

I’m overwhelmed. What do I want to do when I’m overwhelmed? Go into hiding; hence the ignoring phone calls, blog, texts, facebook, etc…. Sorry to those have been calling and I’ve been MIA. I was so ready to leave for New York today. SO READY. I don’t know how much more of this anticipation/anxiety I can take. I told you all I am a die hard plan queen. When things don’t work out; I become an instant anxiety ridden freak. This is me now. Also, hating the fact that we are just sitting in the freaking hospital, when Ronan has not had a fever now for 2 days, but they still insist on keeping him on these fucking antibiotics even all the blood cultures are coming back negative for any kind of infection. I know, I know, better safe than sorry. I just don’t like my baby having to get more medicine than he needs; and especially when he does not need it. It’s hospital rules, I get it. But my inner rule breaker just wants to take him off all of this crap and take him home. We also need his ANC to come back up; hopefully his numbers will be even better tomorrow.

Woody is working on getting the plane situation figured out. I feel bad for Mr. W…. he is trying his best to work it out for us; but time is money, people. Woody is supposed to call him on Wednesday to give him the for sure word on when we can leave. The doctors have been going back and forth on it. Sooner rather than later please. Mimi and Papa have been coming to relive me during the day; and I do the night shift. It helps so much. Except for the fact that I miss my twins like CRAZY. I’ll never stop resenting the fact that I don’t get to be around them very much anymore. Thank GOD for Woody. He wins the best dad of the year award, hands down. He is giving me the best gift ever just because I know that Liam and Quinn are in the best hands, with the best dad in the world.

I don’t have much more to say tonight except thank you to everyone who has been checking in, dropping of meals (Kati- thank you so much for last week and tonight) I wish I could give you all a big hug. We are hanging in there, we will get to New York sooner or later. I just keep telling myself everything happens for a reason. Even though I have come to despise that stupid saying because there is no reason that my baby should have cancer.

G’nite to all of you beautiful people out there. Sweet dreams.

xoxo

P.S. Because I don’t have a lot to say tonight; mainly because I’m scared of the thoughts in my head; I’m going to leave you with an email from my precious Susie who lives in Colorado. She was in town over the weekend and got to spend some much needed time with us at the hospital. It was the first time I have seen her since Ro’s diagnoses. It meant the world to me. We had the best time, talking, laughing, hugging, and crying. I miss her so much and she will always be like a sister to me. She is so great about reminding me of how strong I am and that I can do this. A piece of my heart will always be with her no matter the distance between us. I love you JYD.

Hi Mama- 

I just wanted to send you a quick note to tell you how much this morning meant to me.  You are absolutely the strongest woman I know.  Seeing you at the hospital with Ronan was pretty fucking intense.  Although I’ve been hearing about everything from the beginning and have been reading about it everyday since, nothing could have prepared me for seeing you two in that setting.  It was scary and very real.  Ronan is a darling angel and I hated seeing him stuck in that bed. With that being said, you are doing EVERYTHING you need to in order to kick this shit and that is apparent even from hundreds of miles away.  I know that very soon things will be back to normal.  Maybe not before you briefly glimpse hell (during isolation for 30 days amongst other hurdles) but very soon nonetheless.  I love you so much Maya.  You are a wonderful mama and your love alone can conquer all of this.  It has to because I said so and I’m the JYD mother fucker!
Stay strong and know that I think about you EVERY SINGLE DAY.
All my love,
Suz

Magic Medicine… Day one, Round 3

This chemo is going to be rough. This is the stuff that causes major vomiting… and a few other side effects that we will PRAY hard, do not happen to Ronan. Hearing loss is a big one. High pitch hearing loss to be exact which I can absolutely live with, if it means keeping him alive. I am hoping and praying that Ronan tolerates all of this well, without a hitch. If he can get though these 4 days, this baby can get through anything. Our poor roommate next to us. He is an older boy, feeding tube in his nose, his parents are nowhere in sight… working I’m sure. Every once in a while I hear him on the phone, crying about how he can’t eat. Poor sweet boy. As awful as all of this is, I am so thankful that I am not a working mom and can devote all of my time to taking care of Ronan. We are so fortunate for being in such an awful situation. I can’t imagine having to leave Ronan in the hands of others to go and work. Thank god for Woody, I thank god for him everyday of my life.

Today has been great so far. We spent the morning home, getting ready for our week here. I have the laundry all done, house all clean. Niki stopped by to bring me coffee and Ronan actually came out of my room and played with her for a bit. We headed over to the clinic to have Ronan’s counts checked to make sure he was good to go to start this round of chemo. Ro was very excited about seeing our nurse, Sharon and followed her around the clinic while we were there. We didn’t have to wait long to get a room which was nice. We got checked in very easily and fast. Once we got up here we played in the playroom for awhile. Ronan was full of energy. He is sleeping now.. he didn’t nap today and is taking a late nap. They are going to start his first dose of chemo soon. I am anxious to get it started asap. The sooner we get it over with, the better. Trish is going to come by and bring me dinner and Woody is going to pop in as well.

We are in the same exact room that we were in when we were first admitted to the Oncology floor. It gave me major anxiety, walking in here. I tried to talk myself out of a panic attack but it didn’t work. I almost passed out on the spot. I am fine now.. I had Woody stay with Ronan so I could go downstairs and have a conversation with myself about how I need to suck this up and be strong for Ro. This whole floor brings back so many awful memories for me. It was a very hard 3 weeks when we were first here. I keep telling myself if I survived three weeks of this before, a week will be a piece of cake. Fucking cancer. I still can’t believe this is happening to our precious baby. It is a parents worse nightmare.

It’s going to be a long night. We are still waiting to start the chemo. It has to be double approved by the pharmacy before they can even deliver it, and the person who has to approve it, does not even get in until 9:00 p.m….. hopefully Ronan will stay asleep during the whole process and will not have any side effects. Trish came to visit and brought some homemade pumpkin soup. It was delicious. Woody also came by and brought CPK for all of us. While they were here, Dr. Maze stopped by to check in. It is always nice to see him, Ronan talks about him all the time and always asks me if he is going to carry him to sleep. So sweet and funny. We talked to Liam and Quinn tonight and it sounds like they are having a great time in Colorado. They got to spend some time with one of my best friends, Susie, who lives there. Wish I could have been there with them. Ronan talked to them both on the phone tonight. He misses them just as badly as I do. I hate that they we all have to be away from each other so much now. I will never stop being bitter about that.

Wish us luck tonight. Hopefully Ronan won’t even notice the chemo and will sleep right through all of it. Goodnight dear friends.