He is my sun, my stars, my moon above

A bloody nose led us to the clinic for platelets earlier today. As soon as we were ready to head home, Sharon came over to flush out Ronan’s tubes and the saline started squirting out the side. Not a good thing. He had a tiny hole in the line that leads to his broviac which could cause a major infection to go into his system. That got us booted out of the clinic and sent over to the ER to have his tube replaced. It was no big deal; they just clasped  off the top of his tube and replace the bottom where it was broken. Now, we have to stay in the ER so he can get a dose of antibiotics as a preventive to any kind of infection that may have started to grow. He has not been happy to be here. Lots of yelling and screaming that he wants to go home. Can’t blame him. The ER sucks. And not to mention, playing Christmas music in the ER is just wrong.  He is asleep now… Thankfully. But as always, as he sleeps away and I sit for hours holding him; I have way too much time to think.

Do you know what it’s like to cry tears because your baby has cancer? Do you know what it’s like to even fathom the idea of losing your child? I do. Every second of the day I think about Ronan. He is the love of my life; the last baby that we decided to have. He completes our family. He was the perfect ending to all of us. He makes us whole and all around we are better people because of this one little boy. Sometimes, I sit and think about life without him and it makes me sick to my stomach. And for all of you out there who are going to tell me that I shouldn’t be thinking that way; too bad. It is a part of this, as sick as it is. I can already tell you life without my baby would be HELL. I am so sad for any parent that has to live through something like that. It is not right and it is not fair.

I started the day off today by crying, and I’m ending the day the same way. I’ve been sitting here in the ER for 3 hours now staring at the wall saying over and over in my head, “Please don’t take my baby away.” I’ll bet you I’ve said this a thousand times tonight. It’s all I can do right now. If I say it enough, it has to work. A life without Ronan, would be no life at all.

I, on the other hand, got not a thing done  today in regards to our upcoming trip. Tomorrow will be better, yes? It has to be.

My mama

I had a good talk with my mama today. I know I don’t mention her on this blog often enough and I’m not sure why. Every source of strength, hard work, compassion, and love that I have inside me as a person, I got from my mom. You want to know why and how I am such a good mom? It’s because of her. She raised me to always make the best of things, always give people the benefit of the doubt, and that your family comes first. She is the hardest working woman who never asks for a thing; but is always there to help others. I picture her in my head at least a few times a day, working in her butt off in her cafe, all while supporting us and what we are going through by talking about us, thinking about us, and loving us. She eats breathes and sleeps for my brother and I; and for her Grandbabies. I couldn’t ask for a better mom and it breaks my heart that she is there and I am here; especially when I can tell in her voice that she wants nothing more to be a daily part of being here and helping in any way she can. When I am having a hard day, or I am feeling sorry for myself, I often think of my mom and how strong she is. It helps me to pick myself back up and move on while thinking about all of the positive things that are surrounding us right now. I wouldn’t be who I am today if it weren’t for my mom. I cannot wait until the summer when Ronan is in remission and we can do what we do every summer which is spend some time in Washington with my family. It is one of the things my boys look forward to most in life. Our summers in Washington are magical, innocent, and pure. There is nothing like watching the simplicity that comes from my boys spending time with my mom and Jim.

My mom knows that sometimes I am not so good with words and expressing how I feel to her, but I feel like after going through this, it is becoming easier for me. My mom also knows when I don’t have the words; not to ask or push me. She knows when the I need her most, I will ask. She is silently walking through this with me and respecting my boundaries which is something that I really need right now. So even though I don’t say it enough; I love my mom very much and am thankful for her everyday of my life.

Today was a quiet day around here. I swear I went into a sleep coma for about 3 hours. It was a combo of staying up way too late last night and being wiped out from the hospital. I feel like I got caught up on a little sleep which is always nice. We spent the rest of the day watching football and playing outside. I even went for about a 4 mile run. It was so cool and perfect out tonight and I am happy that running is finding it’s way back into my heart. It was just what I needed tonight. Ronan has been running around like crazy, wrestling with his brothers and just enjoying being a 3 year old. I spent about an hour on the top bunk of Liam’s bed tonight just reading to all 3 of my boys. Then Quinn read a couple of books to us. It was priceless and some very special time together that we all needed. Ronan seems to be feeling well but I know next week is going to be when his levels drop. He is usually wiped out after day 13 of being done with his chemo treatments. Today is day only day 6. They say the chemo hits them the hardest 7-14 days from the time you start it. We go to the clinic Monday and Thursday and I will be keeping a close eye on him. Hopefully we won’t have another bloody nose disaster.

I hope you all have a blessed weekend full of laughter and love. Squeeze your babes extra tight<3 Goodnight, friends.

Stupid bloody nose

Stupid bloody nose. Those were the words I heard all day long. Ronan had a handful of bloody noses over the weekend, but nothing that we couldn’t control. Last night, he wanted to sleep in his own bed so I let him. I slept in his room with him, but in the other bed. I fell asleep around midnight and woke up to noises that were coming from the livingroom. Ronan was sitting on the couch, upset over his nose that was bleeding. I don’t know if he was upset because he didn’t know where I was or because of the bloody nose. All I know is he was pissed and wanted nothing to do with me. It took me a good hour and a half to calm him down and get him back to sleep. He was slamming doors, screaming, and crying. I think it was a combination of him not feeling well and me not being in his bed with him that upset him so much. We had an appointment for the clinic at 10:45 this morning, but I called and got us in early. From about 9-4, Ronan had a pretty consistent nose bleed. His platelets were really low so they transfused him twice. He also received some blood. My body physically aches from all we went though today. It seemed like all the pinching in the world could not get the blood to stop. We were covered in his blood by the time we went home and his little nose is so sore and raw. He was so upset by the whole thing that we had our nurse, “A,” give him a sedative, twice. Mimi Kay stayed the entire time with me, thank god. She helped to get me new Kleenexs, and wiped me down with baby wipes when I was covered in blood. Now that’s a good mother-in-law right there;) Finally, around 4:00, it subsided but we waited until 5 to go home. Once we got home, Ronan was off and running full force; despite me trying to keep him relaxed and calm. He threw a bit tantrum about wanting to go and get shaved ice, so I took him to the little place right by our house. I figured after his day, he deserved it. Since we’ve been home, he has been fine. But one more nosebleed and we will have to be admitted into the E.R. Praying that this does not happen.

Sitting in the clinic today was hard. You know what’s sadder than a 3-year-old with cancer? A teenager with cancer. I have decided that after spending the afternoon, surrounded by older kids with cancer. As I watched them, I felt like my heart was breaking into a million pieces all over again. At least Ronan doesn’t understand what is happening to him. He just finds it more annoying then anything. He is so fiercely independent, and I know a big part of his anger is not being able to be independent anymore. But he doesn’t get the jist of it.. the bigger picture of all of this. These older kids, understand everything. They understand mortality and what they are up against. I can’t imagine what they must be going through or feeling. Thinking back to when I was a teenager, I was so clueless. I had no idea that I was so blessed to be a healthy kid… I will never look at teenagers the same again. Especially one’s with cancer. Add them to my list of heroes.

Okay… I am so tired my eyes are blurry. Hope I even make sense tonight. Going to try to get some sleep. Thanks for all of you who were thinking of our precious Ronan Baby today. Big huge virtual hug to you ALL!

Sweet dreams, my angels.

xoxo