I Persist

Where do I start today? I don’t really know. I’m very emotional today. It is the anniversary of the death of a good friend’s son who also had gliomatosis. I grieve for my friend. It is this friend and this son whose story I found nearly four years ago in my online quest for any information on gliomatosis. Her son had already died at that point. But she spoke of treatments in Germany and I had an inkling of a hope that maybe TJ would beat the beast. No one has ever slayed this beast so far, but my hope remains that someone will and then the beast and all its kind will cower and shrink away. I want to honor Jacob’s memory and give out an act of random kindness (ARK) but I find it so hard to interact with the world today. But I know that any act at any time in his memory will be smiled upon and so when the day comes that I am feeling up to being more public I will give that gift to a stranger.

So in my emotional state I decided that I needed to do something positive for my life and today that meant continuing work on the never-ending project of my basement. The goal is to re-make it into a useable space for my youngest son and myself. He doesn’t like to be alone and I really want him to play with his toys which currently reside all over the house. It’s a big enough space to house all his toys, anything I might want access to while I’m spending time near him, a seating/TV area, and I’d also like to incorporate an area for TJ. I’m not too sure what that will look like. I have TJ sprinkled all over the house right now. For me it’s a way to see him wherever I may be since it’s the only way I will ever see him. There’s a large photo of him and a little area of small photos and shells and such in the kitchen. The dining room is home to his paintings and another little shelf of his Russian nesting dolls, pressed pennies, numerous photos, a shadow box of photos, his ho-ho-ho glasses, items from the funeral, origami….there’s a lot in that room actually. Moving into the living room is his urn placed front and center on the mantle along with an angel, a ladybug, and another shadow box of photos. In my room….in his room….you get the picture. There’s almost no place in the house where I can’t see my boy. I like it that way. But I realize that it can be hard for others. And not only that, I’ve been asked if the “boys’ room” could be used for an office which would mean finding a new place for more of TJ’s things. Don’t be alarmed or take up defenses. I am almost “there”, that place where you know you are ready to DO something with their space and their things. It’s crossed my mind for a long time now but I’ve not quite been ready yet. I know people who packed up there dead kid’s room a mere weeks after the funeral. I don’t know how they did that. It’s no judgement. I just honestly don’t know how they did that, emotionally speaking. So my response to reinventing the boys’ room  was that I need a place for TJ’s things because I can’t pack them up (oh, and Rocco won’t use his room; it houses his clothing and anything else of his that’s in there never gets touched. He won’t sleep alone. He misses his brother who he shared a room with and refuses to sleep alone. The mere mention of even sleeping in there for even a couple hours brings tears and fears!) And so part of recreating the basement is making a place for TJ.

Back to the basement………..I worked down there for an hour and a half tossing junk that hasn’t seen the light of day in probably a decade. I came across some of the sweetest photos of the big kids when they were little. But the best and most heart-breaking item I found was a faded photo strip of me & TJ when he was probably four years old. We ALWAYS grabbed the photo op whenever there was a booth around. It didn’t matter how much it cost, we never missed an opportunity. The third photo on this particular strip shows off the absolute biggest smile, the kind that’s all cheeks. I stared at it, longing to jump into the photo and kiss those cheeks, to hold that sweet boy like I was in the picture. I sobbed…..and sobbed….and sobbed…..

To this day I can’t understand how someone is here one moment and gone the next. I mean, I understand in my head but not in my heart. No, actually, I’m not entirely sure I understand in my head either. It’s quite impossible to wrap your brain around. Even if you’ve been there, are there- and you know what I’m talking about- you still can’t wrap your brain around it. I think when one is logical about death it’s so easy to say “we all die sometime” or “it was his time” or “he did what his soul came to do”; but no one really can comprehend what that means, what the stakes are, of the actual physical, mental, and emotional enormity of what that looks like and feels like and IS.

This is what is on my heart. I am close friends with several moms whose young sons all died at the hands of GC and with this anniversary today, for some reason, I am feeling slapped in the face and reminded that literally every couple months is the anniversary of the death of a close friend’s son. I am- we are- heartbroken but what choice do we have but to love and be kind and smile and try to make some small difference. It’s what our sons would have wanted.

And so I persist. I persist in fixing the basement (again); I persist in my work; I persist in my interests; I persist in my life; I persist in remembering; I persist in kindness; but mostly I persist in love.