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  • Writer's pictureJenny

I'm at Guilt Beach and the waves are crashing down on me.

Updated: Aug 9, 2019

Dahlia and I are sharing a lifetime together, truly, unless a cure is found. She will live to around just as old as I am, today. How’s that for a mind f***? Needless to say, the pressure is on to make every day a full, worthwhile, joyful day.

Yet, lately, I still yearn to get away, I still count down the minutes until bed time most nights. I work every day and my daughter’s time is mostly spent in the arms of someone else, a caregiver, instead of my own. If I let my mind go there, to the notion that each day is a ticking time bomb, my brain feels like it could explode, and my heart starts pounding out of my chest. It’s a back and forth struggle: put effort into making each day wonderful and amazing; hold her longer, read her another book, sing her one more song than usual. Or, plop her in front of the TV, skip the last book, put her down 10 minutes early so I can have some alone time or catch up on things.

I’m doing a good portion of avoidance: doing what I should be doing as a mother, but wanting to get away, imagining being somewhere else, doing anything else, putting on blinders to the saddest part of my life. And I can now go hours, almost a full day, feeling like all is totally fine, focusing on other things, until I remember my daughter has a terminal brain disease, and then I feel guilty. It crashes in, and it’s like I got swept away by a wave unexpectedly after I had my back to the ocean.

The holidays are coming up, and I’m dreading them. I see them as a marker, a countdown of how short the healthy part of her life will be. How many good Christmases will I get? With Dahlia moving, happy, pain-free? 13? 25? Stephen Romero got six, just six Christmases. He died in the Gilroy shooting. His mother did not plan on just six. So of course, none of us know how many we get. We should cherish each one. That’s almost the motto of having a child with BPAN, in our little community. That none of our days are promised to any of us. But it still screws with your mind to have a probable storyline already written for your kid. It’s still something that looms over you and makes you feel crappy, guilty, scared, nervous, dread, and infinitely pressured.

And then there is Teddy. He gets a ton of attention when we go out, I think because of the curly red hair and his big fun personality. It is hard to give him all my attention and affection when I have the time to, and just be grateful with the fact that I am raising a typical and healthy kid. I instantly feel guilty when I do that. Which is not fair to him. It's okay to be thrilled to have such a fun, smart, easy kid. He is so patient, especially for a three-year-old. He’s fine with leaving places because Dahlia is having a hard time, he knows she’s not as strong as other kids her age. He understands she can’t talk or walk and that she goes to “classes” to help with that. But he doesn’t like when she screams, he runs out of the room, it scares him. It’s also astonishing to see him pick up something new in an instant, a saying or a song, and it’s so easy to teach him almost anything in a flash. I do not compare them and their abilities though. Dahlia is in a league of her own, going down a very unbeaten path, and as I said before, I happily shed that habit, comparing her, even to other kids with her disabilities. And I find her learning things that we didn’t try to teach her and weren’t watching for, like wrap her little fingertips around our door keyhole to pull herself up and try the door handle, feed her baby doll a fake bottle, and drop her shoes and try to slip her feet into them while standing. She surprises us almost every week now with a newfound skill. And better yet, I’m not seeking them out, looking desperately for her to do something new anymore. I’ll just notice them one day and smile.

The guilt I feel is like a fun house of mirrors where every way I turn the result is always the same: I’m guilty, but just for a different reason.

Guilty for not making every day special.

Guilty for making it special and leaving Teddy out.

Guilty for enrolling her in so many classes and therapy, and not Teddy.

Guilty for enrolling Teddy in something she can’t do.

Guilty for loving on Teddy too much and being happy that it’s so easy with him.

Guilty for not allowing myself to love on Teddy so much and let myself be happy that it’s so easy with him.

Guilty for counting down Christmases when I shouldn’t be thinking of life that way.

Guilty for being pissed off at all the pressure.

Guilty for not even caring about the pressure and blowing it off.

I finally talked to a therapist this week. Only on the phone, I still cannot get one to commit to seeing me regularly. We spoke for almost an hour. He told me I’m not escaping my kids when I want to leave or get away, I’m escaping the pain. And that I shouldn’t feel guilty for that. Ha.

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