15 days after Henry left this reality ~ and today (nearly 6mo later...)

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me and little man - from my book


I just looked at the last entry I made, on March 19th, and I oddly finished with, "life is so unpredictable..." 


My 14 1/2 yr old son, Henry, died on March 27th. Two weeks ago yesterday. Eight days after that last post. 

My superhero side-kick, my little man who I worried over for his entire life, just passed away. I know I am still in a bit of shock, as just the act of typing out these truths makes me feel as if I might be sick, or need to run, or both. It's a strange thing to grow up always hearing that the worst thing that could ever happen to you is the loss of your child. You're supposed to be outlived by your babies, right?

My biggest fear, as Henry grew older, was that I might die before him. I didn't know how anyone else could possibly love him as fiercely as I do, could advocate for his needs as persistently as I do, who could make him laugh when some idiot stared too long or said something straight up insensitive. How would my little boy be okay in this fucked up world without my protection?

And then I got MS. 

Seriously? Like I need a handicap to this already daunting task? Fine. We'll work with this. And so far, we have. And guess what? I learned that other people do love him as fiercely as I do, that others could learn how to advocate for him, that others could protect him from all the hurtful things people say or do. He was okay. Turns out I wasn't his higher power after all. 

My MS has taught me how to slow down. It's taught me that self-care is more of an 'inside' job than I used to imagine. What I mean by this, is that you have to actually believe you're worth the effort and time self-care requires before it can really give you what you need. At least this is my belief. I used to honestly believe that my needs should be last, after everyone else is well cared for. Christ, I could wait to take care of myself until after the clothes were ironed! And this has changed, thankfully.

I thought I would record what it feels like, 15 days in, so I might look back on this time.

It hurts. Emotionally and physically. My chest feels like a wrecking ball has crushed into it. My throat feels tight at times. I'm even more tired than I typically am. I try not to worry about having a MS relapse from the increased stress. 

I am also laughing with my daughter, going out of town with my guy, having lunch with my friends. Tomorrow I am bringing some of my books to sell at another shop. Life hasn't stopped, but I sure don't feel right. 

It's as if I'm moving through everything with a film or bubble around me. Like something has shifted in the universe, and I'm the only one who feels it. But this thinking disappears when I see others who loved him like I did. 


****Update****

Today is September 20th, 2019. It's been nearly 6mo since Henry died. I feel different. I still fall apart at times, remember moments that I know I will never re-live, and this hurts. However, I also feel a certain calmness around the experience of living on this earth. I feel more connected than ever with all humans. I feel more accepting, understanding, empathetic of our struggles to 'be good' or 'do right' by others. This is an interesting journey, life in a physical body. We are constantly walking through hardships when, and only when, we love and live big lives. I'm okay with this agreement. I wouldn't trade a thing with how I engage. I truly believe that there are only two things I need to remember to have a beautiful time here: Be LOVE and Be of Service. Always. 















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