No one wants to see their child hurt. But when you have a child with a serious medical condition, seeing your child in pain can often be a frequent occurrence. Physical pain is one thing - emotional suffering is another- one I had little experience with until recently.
(Yes, I am struggling, so that's why I am writing!)
When Xavier was initially diagnosed and treated for brain cancer, he was a baby. He couldn't talk, express his feelings or even remember the trauma he suffered. Now, he is older, smarter and more thoughtful - yet too young to understand.
About a month ago we started to see a change in Xavier. He was different. His sleep patterns changed, he was lethargic and other symptoms arose that concerned us. An MRI was immediately scheduled, followed by appointments with multiple doctors. A lumbar puncture has now been scheduled.
I am not concerned they will find more cancer. I am not worried there is anything physically wrong. What has me scared and heart broken is Xavier's emotional reaction to the latest round of hospital visits.
He is worried. He doesn't want more pokes and I can sense he is now afraid to let us know if he feels different because he knows it will mean more tests.
Last night he couldn't sleep because he is worried something is wrong with him. "Mommy I pee a lot and I don't know why," he says after hearing us bring this concern to the doctor. It's almost as if he feels guilty for having shown a symptom he can't control. He tells me he doesn't like the poke when he is awake and asks to be gassed first.
This made me sad and question whether he should be part of our discussions with the doctors. I want him to be informed, to be a part of what is ultimately his life. But on the other hand, I want him to be oblivious. I want him to be a five-year-old boy.
No child should ever have to think about these things. During play with his sister, they have hospital visits and even one of her Barbie's has cancer.
How honest do you be with a child his age about his past diagnosis and current situation? I will never lie to him. I will always tell him (in a way he can understand) what is going on. And like I told him last night, I am extremely proud of what a brave, strong boy he is!
It's during times like this where my own strength is challenged... I tell myself I need to accept this is our life, this will be his life. Nothing is going to change except our attitudes and thoughts if we let them. But I refuse to be anything but positive. And I hope that in exposing Xavier to my positivity, he too will learn how to think for the better not for the worse.
I challenge everyone who may be going through a tough time, to find that silver lining. If you believe in your head it's there, then it is there. Go find it!