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Why I Talk About My Illness and Other Hard Topics With My Daughter


I am the mother of a 10-year-old spitfire of a girl. She is on her way to middle school and the whole idea of that blows my mind. She is smart but laid back, strong but sensitive, and everything I wish I was as a kid. Sometimes I wish I was able to spend more time with her, to learn her better, because sometimes we feel like strangers already and that scares me.

I am honest with her when it comes to my disease and I think that’s an important aspect to discuss. We need to be more honest with our children, about more than just disease but things like the government and politics – things that that can change their day-to-day life like school shootings and terrorist attacks, and good things too like how to make your grandma’s “Famous Sunday Sauce” and meatballs, and what it means when someone calls them beautiful.

The times we live in demand it because what we do now directly changes their future – from the appointment of Supreme Court judges to the changing of fracking laws in the middle of the country to the curriculum offered to our kids in schools, and the closing of libraries across the nation. We need to raise educated and aware children. Children who understand themselves (to an extent) and other people (also to an extent) and know how to stand up for their rights, and the rights of others if need be.

We need to raise warriors.

Because lately, that’s what life demands on all fronts. At school, they battle more than we could imagine and more than most will ever really probably share. In the real world, they deal with a president that doesn’t care about children that look like a lot of their friends, they deal with violence aimed at them for no reason.

They deal.

If you pile a parent with chronic illness into that equation it can obviously be a ticking emotional timebomb ready to explode at any moment, a live walking grenade with a loose pin.

We have done all we can to help with this process. We have taught her there is no shame in expressing her feelings to me, her father, her guidance counselor or her therapist. I wonder if it’s too much or if it will ever be enough. I wonder if that’s why she knocks on my door for random hugs or takes all the love I heap on her because I am afraid of the day I won’t be here to do it anymore. It makes me think of the things I miss, the things I will miss and have missed with not only her but others. All of it is just the hardest maze to make it through and the hardest knot to unravel.

I also understand that we have to learn to let them be kids too. To teach them to be soft and accepting of things that happen to them. We must learn to show them that bad things happen to good people, in all walks of life, every day. Ice cream will always be delicious, and the sun on their faces is a feeling they should love. We have to show them that bubbles and fireworks will always be magical, like the flash of a lightning bug on a summer night.

It’s such a hard line to walk.

I try and believe I will be here to see her graduate college or get married. Sometimes I close my eyes and try to imagine a future and the lights are very dim lately. I try to see her in the future and there is this muted place that doesn’t seem to be where she is, but is, at the same time. I don’t know what that means, or if it’s good or bad, but it just what it is right now. Since I am feeling muted, dimmed, tired – maybe that place is too and it’s spreading in a way that makes it impossible for me to find happiness in just about anything.

I hope and pray that I learn to trust in the process of what comes naturally to me in being her mother and that these diseases don’t take even more time than they already have from her, from us. It isn’t easy, to say the very least, but when I have the opportunity to do something special with my daughter, I always try to take it.

The energy that I have gets expended on the people who love and care for me – then, now and I believe in the future.

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