What a day!

What a day! So glad it is O.V.E.R! Our usual Thursday morning started out by heading over to the clinic, with our Mimi Kay in tow. Ronan seemed like he was in a good mood, until we pulled up and I think that he remembered that it was Thursday, which means Broviac dressing changing day. Holy tantrum! I had to pry him out of the car and he proceeded to kick, scream, arch his back, and cry. He is so strong that I can barely contain him anymore. I was trying to hold him to carry him into the clinic and it took a good 10 minutes outside to even pick him up. He ripped my favorite good luck necklace off, my gold four leaf clover that Woody got me for my birthday last year. Ripped it right off my neck like he was the Incredible Hulk or something. I finally got him picked up and into the clinic but he was still screaming and trying to run away. I took him out into the common area, where the coffee lady is and held him in my lap at the table. He was still kicking and hitting me. I finally broke down and started crying and this is the only thing that ever gets his attention and makes him stop. I cried and did my usual whispering in his ear and he just watched me and soon snuggled up to my neck and settled down. Finally. It was a hard morning. Thank god I had Mimi there to help me carry my stuff and help with his dressing change. His blood levels and ANC counts are still good so he did not need a blood transfusion today which is always a plus. We were able to get out of there fairly quickly. I thought Ronan was getting used to all of this but it is days like today, that I know he is not. I never know what or who I am going to get with him. It is the worst pain in the world to see your baby suffer and hurt. It is beyond emotionally draining and physically exhausting. After we were finished there, Mimi, Papa, and Kathy took Ronan home for me and I went off to see my therapist.I needed it…. my nerves were shot after that visit. We had a good chat and I have started working on some breathing techniques to help calm myself down during the day when I am feeling anxiety. We also talked about things I can do at night to help my mind wander to sleep. I’ll try anything at this point… well, except sleeping medication. Just not going to go there.

After my appointment I met my sweet friends, Jen, Trish, Bethany, and Niki for a nice girls lunch. We had a little pow wow about some things that are in the works for Ronan’s Foundation and Pediatric Cancer in general. I’m telling you, these are the kind of girls you want on your side. Very genuine, smart, honest girls. I felt so lucky to be sitting in the middle of all of them<3 I am very excited about the things we have in store. We are going to turn this into something very beautiful and positive. I will never give up on my vision or hope for all of this. When Ronan is well, it is something I will devote my life to. Right now, I am just going to have to take baby steps to get to where I want this to go. I’m o.k. with that. Baby steps are steps in the right direction.

After lunch I ran a couple of errands and went to pick up Liam and Quinn from school. Such a treat for me. There is nothing I love more than seeing their faces light up when they see that I am there to pick them up from school. It has always been one of  my favorite things, but now it means so much more to me because I am often not able to do it. They were very happy and excited to tell me all about their day. I love that they are doing so well in school and seem to enjoy it so much. One less thing I have to worry about.

Mimi, Papa, and Kathy stayed all day and for part of the evening tonight so Wood and I could go grab dinner. We went to Chelsea’s for a quick bite. It was nice to be out alone with him. We talked a lot about New York and our plan and have the dates pretty much finalized. Woody will take me out there and when he is not there, Mimi Kay will stay with me. Karen, Tricia, and Sarah have all offered to come out during part of the time too and I just may take them up on that. I’ve got a couple of people out there that I know so hoping to connect with them as well. The more support we have, the better. It’s going to be quite a journey.. I am going to have to gather all of my strength to get him though this next chapter.

That’s all for tonight. Very tired, hoping for some peaceful sleep without nightmares. Goodnight, friends. <3

Angels waiting in the wings

I am amazed at the people who have come out of the woodwork to help us. People that we know and complete strangers just because they are touched by Ronan’s story. I put something out into the universe today… and I am getting amazing responses. People who are willing to go above and beyond to help us any way they can. It is people like this that the world needs more of. Selfless people who stand by their word and pour all the energy they have into helping out people like us. I’ll never look at the human spirit the same again.

All has been pretty quiet around here. Ronan is still storming right a long. He had a few fits today….bouts of anger and hitting me for no reason. Well, I guess he had a reason…. his reason. He was that angry that Liam and Quinn were not home. He likes to take it out on me and when his little temper hits, I bear the brunt of it. Not fun to see or watch. He’s like Dr. Jekyll and Mr. Hyde. I never know what his moods are going to be like. I am doing my best to discipline him but sometimes nothing works and I’ve come to find out I just have to let him let his anger out. He’s got to be angry about a lot and I know he is having a hard time processing what he is feeling. It’s heartbreaking. I keep telling him that we will get through this and he will get better. He talks all the time about getting his “Iron Man” out. I don’t blame the kid.

We go to the clinic in the morning and then Mimi Kay and Kathy are going to watch Ronan so I can get some things done. It will be nice to get out of the house and take a break from Ronan. I am meeting my friends Jen, Bethany, and Trish for lunch and to go over some things for Ronan. I am so lucky to have girlfriends who are willing to drop whatever to see me and work on some ongoing projects with me. All of their support has been keeping me going.

I can’t believe the holidays are right around the corner. It’s my favorite time of year to live here. I am hoping to take Ronan to a pumpkin patch this week or next. We will of course talk Liam and Quinn as well. Last year we lived at the pumpkin patches and I took all of the boys half a dozen times. We are a pretty active family and I love taking my 3 little guys off for adventures. It’s been awhile since we’ve done anything like that. Ronan seems to be feeling just fine so a pumpkin picking we will go.

I’m still trying to find my balance and where my life fits into all of this. Before this happened, my life consisted of a daily routine of healthy outlets. I’ve let all of those things go and can’t seem to get back into them. I miss my workouts, running, hiking, boot camp, etc…. Any time I have free from Ronan, I find myself feeling guilty. I feel like I need to be with him 24 hours a day. I know that’s not realistic or heathy, but time away from him feels selfish to me. I know I need a break and I am going to try to start doing some things again. To be quite honest, I feel like if I put myself back out there, there world is just going to swallow me whole. It’s that whole anxiety thing that I’m now dealing with I guess. I feel safer trapped inside my little bubble with my little guy by my side. It is something I will continue to struggle with but I will also continue to work on. There has got to be a happy medium somewhere… it’s just going to take work to find my new comfort zone.

It’s 3:10 in the morning now. I’ve been up off and on all night long. I finally feel like I am tired enough to sleep a few hours. Thanks for reading this, thinking of us, and praying for our family. Love to you all<3 Goodnight, friends.