A new kind of normal

Somedays, I can almost trick myself into thinking this isn’t happening to us. It usually doesn’t last more than a few hours, but those few hours are so blissful. Like this afternoon for instance. My neighbor, Niki, came over to bring me lunch. We sat at my kitchen table and enjoyed each others company while listening to Ronan play in the living room with his Star Wars guys. It was just like he was a normal kid, doing normal things like flying his ship above his head and vividly using his imagination to make up battle scenes. Nevermind the fact that he is bald as a cucumber and has cancer invading his little body. And then out of the blue, BAM! It hits you again. It may take something like the hospital paperwork that you forgot you requested in the mail arriving. You rip it open and go over all 65 pages of your son’s disease. Not understanding half of it, but it doesn’t matter. There it is in black and white. Immediately, you feel like someone has punched you in the gut 500 times. You look at your husband who skims over it and you watch the sheer terror and panic come over his face too. He is now pacing the living room talking to himself about why in the world can’t he fix this. He is so used to being able to fix and take care of anything. He wants to know how in the world we not know this was going on in our son’s body. Then he looks at you and says “Promise you won’t leave me.”(which would NEVER happen) You look at him and the only thing you can say is, “Promise me he will beat this.” He promises you, but the terror in his eyes cannot be denied. My stomach feels like it is in 1,000 knots 24 hours a day. There is no way to make that feeling disappear. So, a lot of the time I sit and just stare at Ronan and hold him close to me. We have been having a lot of cuddle time because holding him in my arms is the only thing that brings me any sort of comfort. At least in this very moment, I know he is safe and secure.

Today, we had a visit from my new friend, Joanie, and her son, Alex. Alex is the boy who had this when he was Ronan’s age and he is now living a happy, healthy life. Ronan and I talked all morning about his visit from his “army friend” and he was so excited. But once they got here, it was a different story. Ronan was not thrilled with having people in his house. He’s been acting this way to everyone who has been over. I’m thinking he’s just tired of so many people around, with all the nurses and doctor’s we’ve been exposed to in the last few weeks. By the end of their visit, he warmed up a little bit and we all sat around and played Star Wars. Alex brought Ronan his own army gear to wear and we begged him to put in on so we could get a picture with Alex. Ronan refused but as soon as they walked out the door, he put them on and kept them on for most of the day. He walked around so proud to be wearing them. He told me he wants them to come back and visit. I hope they will. It meant the world to me.

Woody went to the ASU football game tonight. He didn’t want to go but I made him and told him to have the best time. This is our normal now, and we have to continue to do normal things. My friend, Lindsey and her baby girl came over to keep me company for a bit. Was nice to spend some time with her. We had dinner, watched a bit of the game, and went for a little walk in the dark. I pulled Ronan in the wagon to the end of the street and back. He didn’t want to be out for very long. We are now cuddled on the couch and watching the game. It’s extra lonely tonight and I miss my boys and Woody. I would give anything, to have the kind of normal we used to. And I know we will someday. I just miss it so very much.


2 thoughts on “A new kind of normal”

  1. I wish I was closer to help Maya. Reegan never lets a night go by that she doesn’t pray for Ronan & says to “just tell his mommy, she will make him feel all better. She is absolutely right & you’re exactly what Ronan needs. Easier said than done, but keep your head up. -Xoxo Katrina

  2. I want you to know Alex changed his profile picture to one with he and Ronan. I watched as Ronan stole glances at Alex and would allow himself t smile. As i told you at three it’s hard to process all that’s coming his way. Impossible I imagine cause it’s not something we as adults can process very well. You have to always bring to mind, God is bigger than words on a piece of paper. He goes beyond our ability to reason and control. He is amazing and He knows Ronan so well and He sees your distress in your eyes and hears your tears you cry when you think no one is listening. Everyday there are prayers reaching the heavens on Ronan’s behalf. And everyday you will be given the measure of strength to make it through that day. You are in the middle of the storm and it’s a microburst. Hold on and this too will pass. We will visit again as soon as Alex comes home for a visit. I posted the pics on my facebook. You have to show them to Ronan. Sending hugs and prayers and lots of love.

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