Originally Posted to Facebook Jan 2014
We don’t know what our future will hold. We know what we hope our future will hold, but that’s not the same as what will come to pass. I mean seriously, I have the next 8 years of trips being planned as we speak. I know what I want. That’s life. That’s health, it’s love, laughter, and wellness.
But that may not be my road. And we’ve had to talk to our children about the possible paths our lives may take.
The likelihood is small, but I could die. We’ve had to talk to our children about that. Poor, sweet Agatha has cried so many tears thinking about it. And she’s wrapped herself in a prickly, iron coat to protect herself. I ache watching her go about her days right now, troubled by everything, and nothing. Ella has cried, but mostly she’s stepped up and taken on so many new responsibilities. She’s become a very self-sufficient young lady, who happens to need about a million times more cuddles each and every day.
Cordelia talks about my surgery and when my breast will be ‘chopped off’ several times a week. She has to look at my body every chance she gets, and asks questions about what I’ll look like. And sometimes she cries. But mostly she trusts us when we tell her it’ll be okay. I hope we’re right, and we don’t abuse that trust.
Brom, sweet, snuggly Brom. He hasn’t asked to nurse in a week or so now. I cry each night wishing I could still snuggle him and nurse him as I planned. Yes, we still cuddle him, and feed him with love, and respond to his nighttime needs. We still give him everything he needs. But now it has shifted. Mama isn’t the most important person in his life. And he’s so little. This wasn’t what I planned.
We’ve had to talk about the possibilities of blindness. Who knew that chemo can cause cataracts? Hmm, the information was there, but I didn’t really consider it. Until a nurse became very concerned when I mentioned I needed to start wearing glasses almost all day long instead of just on occasion.
The thought of blindness, even temporary, has left our children really upset. That’s just one more thing for them to worry about. I’d love to protect them from these worries, but how do you do that when they’re here, experiencing this journey with us? Hiding the risks, the possibilities won’t help them if they come to pass. Instead our children would be even more confused, hurt, scared.
Right now things are pretty good. But we have tears, and meltdowns roughly 600 times more than usual right now. Even though things are going well, I still have many doctor appointments, medications, and our future is up in the air for now. We do the best we can to support our children, always talking, and doing what we can to offer them empathy, as well as outlets for their various needs whether it’s art, physical activity, or friends to play with.
We talk, we offer love, and we do what we can to support each member of our family in whatever way they need. This involves a lot of talking, and a lot of patience. I hope that no matter what the outcome of this journey, our family will come through stronger than before. Our children will come through knowing love and light. I do not want them coming through this afraid, anxious, or worried.