This is a tough one. Trey is fine. We/he had a great weekend with Rachel’s family in town and his trip to the hospital visit yesterday went great (he has a new girlfriend there who is smitten with him…of course). With all due respect to the boy, this post isn’t directly about him.
Rather, this is about the second part of the title, life with a “terminally ill child.” I’ve talked a lot recently about the fact that it never really goes far from your mind. Yes, most of life (for us since he has ceased inpatient treatment), is very much like everyone else’s life. He is a healthy normal vibrant five year old boy. Yeah, there is a dark crow that is always just behind your field of vision that is always lurking and you catch glimpses of it from time to time. Sure, there are moments of sweetness that you want to last forever but I suppose that is quite regular too.
Then there are days like I’ve had the past two days. You see, in general, I allow things in to my mind that keep me grounded. Part of what I let in is planning for what the doctors deem is inevitable, part of it is preparing Joe and Bella for the “worst case scenario.” Lastly, I don’t ever want to miss one day of appreciating his life for the gift that it is. However…however some things don’t come in to my mind and heart in a neat organized fashion. I saw a facebook update on a little girl who was about to finish her battle with cancer (and not the way you would hope and pray). The little girl’s name is Bella (don’t allow this to confuse you, it’s obviously not my Bella). It read…
“Bella continues to sleep and is not really responsive anymore. We continue to tell her how much we love her and how wonderful she is. She is comfortable and not in pain and never alone. Please continue to pray for Bella and our family.”
I immediately went “there.” I pictured the room, I pictured Trey, I pictured us. I wondered about what that would/will feel like. Man, it was dark. Will God be there for me/us? Yes. Will we be o.k? Yes. Does that make those images any easier to see in my minds eye? No, I really don’t’ think so. Then, yesterday, this post came along…
“John 19:30 When he had received the drink, Jesus said, “It is finished.” With that, he bowed his head and gave up his spirit. Bella has now joined Jesus in heaven. She went peacefully, surrounded by love, right after our beloved Father Craig finished praying. Please pray for us now for the strength and peace to continue to #LIVELIKEBELLA”
Tears flowed as I sat on the edge of my bed. Was I sad for them? I suppose. Was I sad for me? Kind of. Was I actually kind of relieved that poor little Bella and her family didn’t have to suffer longer (selfishly mind you, assuming that what lies ahead for us will be similar)? Kind of. Bottom line…I was just sad, real real sad. Sad. After a while, I wiped my tears away and kept on going.
Later that afternoon Trey was driving me absolutely nuts. I was trying to make dinner and he was interrupting me every 3 minutes (if you read my post on Trey last week you know I’m not embellishing). I was working real hard at not flipping out. We made it through dinner as Rachel and Joe came home from Jiu Jitsu. I shared with her how I was barely hanging on. I knew that the posts about Bella had put me on an emotional edge and it hit me. I had to embrace this moment. I yelled for trey and got his treat bag out (they each have there own and get 1 or 2 pieces of candy for desert each night). I dumped his candy on the floor all at once as Trey yelled, “CANDY!!!!!” as he rummaged through it like Scrooge McDuck with his money. We did this several times and I embraced the moment.
Roughly 10 minutes later I could have strangled him again for something else. It’s just how it is.
If there was a lesson for you in all of this I would add that later in the evening I shared the whole story with a close friend of mine. He didn’t give me magic words, he didn’t quote scripture, he didn’t say a word. His eyes swelled a bit with tears that didn’t fall and just nodded. He joined me in my emotion. That is great comfort.
Beautifully written. I read Bella’s updates with guilt. I guess it’s survivors guilt, knowing my princess is still here after her cancer journey. Too many emotions, I think once your child is diagnosed our minds ‘Go There’. Praying that you all continue to enjoy life and live for today.
I’m not sure why, but I have reached a point in my life where I cry at the drop of a hat. It might be a response to something you mention in a “Trey Update,” a particularly sad or even a joyful scene from a movie, a report about tornado victims, an article about Newtown, Connecticut, etc. As always, I have much to be thankful for. However, our temporary home here on earth sure can be such a sad place.