The best gift I ever survived.

"Imagine, if you will--a gift. It's not too big--about the size of a golf ball...It's going to do incredible things for you. It will bring all of your family together. You will feel loved and appreciated like never before and reconnect with friends and acquaintances you haven't heard from in years. Adoration and admiration will overwhelm you. It will recalibrate what's most important in your life.

It will redefine your sense of spirituality and faith. You'll have a new understanding and trust in your body. You'll have unsurpassed vitality and energy. You'll expand your vocabulary, meet new people, and you'll have a healthier lifestyle.[hopefully.] And get this--you'll have an eight-week vacation of doing absolutely nothing. You'll eat countless gourmet meals. Flowers will arrive by the truckload. People will say to you, 'You look great. Have you had any work done?' And you'll have a lifetime supply of good drugs.

You'll be challenged, inspired, motivated, and humbled. Your life will have new meaning. Peace, health, serenity, happiness, nirvana. The price? Fifty-thousand dollars, and that's an incredible deal...This gift came to me about five months ago...It was a rare gem--a brain tumor, hemangioblastoma--the gift that keeps on giving."

She finished, "And while I'm okay now, I wouldn't wish this gift for you. I'm not sure you'd want it. But I wouldn't change my experience. It profoundly altered my life in ways I didn't expect...So the next time you're faced with something that's unexpected, unwanted, and uncertain, consider that it just may be a gift."

-Stacey Kramer, "The best gift I ever survived." TED Talk. https://www.ted.com/talks/stacey_kramer_the_best_gift_i_ever_survived

 

I watched this once before. But as I see it again, it just fails me.

I do not look back on Amelie's journey in the same way, because, as a mother, it's simply torture. I am tortured. In telling my therapist all the trauma Amelie had to endure during her short little life, he sat quietly, visibly saddened, after awhile he replied simply, "I think it's safe to say you've suffered trauma yourself." He's right. I'm 50 shades of fucked up. and not in the sexy, perfectly airbrushed, exotic type of way. Rather, the quiet, regrettable, hands dirty, helpless feeling of fucked up you experience when someone you love has suffered so cruelly, that it leaves a unsightly mark on your soul like a cow's branded ass.

That being said, Amelie's cancer was a gift. I haven't quite figured that all out (or rather, allowed the next level of consciousness to set in). I read in Kate Merrick's book (yep, been reading a lot. avoiding all sorts of real responsibilities, in case it's not obvious yet) how, at some point, bitterness set in. It sort of crept in and had "taken residence" in her heart in the most subtle of ways. I realized upon reading this quote again that so, too, has bitterness crept in and taken up residence in my heart. I'm unpacking it, but it's there. like an unwanted house guest.

[OMG that reminds me, in college I lived in the dorms in USD. We had 4 girls living in a two-bedroom apartment, so much fun. NOT. it was NOT fun. One of the roommates bestie's had taken up residence on our couch. and wouldn't leave. She didn't attend school, and was there 24/7. and she smoked. We even had house meetings about it. and she straight up said, "NO, i'm not leaving." what?! who does that?!?! One roommate was bulimic. We found vomit stored in her closet in plastic bags. SERIOUSLY. the other roommate was an over-eater and a slob. I'm not being judgmental, I'm being literal. If you looked up the definition of a slob, that was it. they were all nice girls, but holy hell. The floor was BLACK and sticky from coke (A-COLA, calm down, we ain't no Narcos) and dirt. My roommate Jen and I were mildly traumatized from that experience, and it's lucky we made it outta there close friends, bonded by the shared....insanity.]

So yeah, I have some bitterness seated in my house like the unwanted college couch crasher who won't leave no matter how many times you ask her to, how many nights you stay away, how much you try to ignore it, or pretend to be 'ok' with it. and it stems not just from one thing. The "you'll reconnect with old friends", that is true. Unfortunately, that also meant old enemies, and worse yet, frenemies. I get angry now thinking about how they couldn't just leave me the hell alone in my darkest, lowest moment. They sent TEXTS offering feigned support. TEXTS. puhlease. One text began with an excuse of 'was gonna call BUT....'  One text called Amelie 'AF'! who? who's AF? She had about 20 nicknames, that was a new one. and not a good one.  It was a subtle slap in the face. Luckily, I was too distracted with the task at hand to respond. The sad thing is they didn't even realize it. In their mind, it was an honest attempt to express concern. If you don't know what to say, the best thing you can do is just PRAY. or send a beautiful card, or donate. or raise awareness or something. not a half-assed insult that makes a person feel even worse. To be clear, however, 99% of texts I rec'd were UNBELIEVABLY supportive, inspiring, helpful, and kept me afloat many days when I thought I was literally gonna suffocate from stress and heartache. But the texts from frenemies and enemies, who in past-lives sought out to destroy me, didn't stop when my daughter was sick. see?! Bitterness. it's gotta go! bc for every lame text that was sent, I got about 500 MORE that expressed love and vulnerability and caring. I haven't deleted one beautiful text that I received when she was diagnosed, just knowing that love is there in my phone is a constant reminder of how good people are and can be, and how lucky I really am. But bitterness is a crafty bitch. It conveniently distorts the past. Bitterness is the opposite of gratefulness. Bitterness is gratefulness' evil stepsister.

Kicking bitterness to the curb where it belongs next to the college couch crasher, another memory is able to emerge: the FLOWERS. Stacey is right, flowers DID arrive by the truckload. the flowers were lovely and magically uplifted me emotionally. I would come home from a grueling hospital appointment to flowers on my doorstep. like a scented, delicate hug from mother nature saying, "you.are.loved." My bff Mel once sent me so many peonies (my fav flower) that my ENTIRE LIVING ROOM was blanketed, and they lasted for weeks. it was magical. I would step out of Amelie's room, her oxygen tank pumping, her puls-ox machine beeping at me, and I wanted to vomit...(NOT in a ziploc, thank you. ew.) then I'd see the flowers and stop. take a whiff, and somehow a smile would spread across my face, through no effort of my own. Therein lies the doorway...Amelie's disease and suffering certainly did "recalibrate what's most important in [my] life."  It is getting harder and harder to get back to that moment--smelling the fragrantly perfect peonies and smiling in the midst of total suffering.

So, armed with that, at some point I hope to view my journey, ALL OF MY JOURNEY, like Stacey Kramer, as the best gift I ever survived. I've taken some major steps back. more like, steps DOWN. I hadn't even THOUGHT about those hurtful texts (honestly, there were very, very few) since. The fact is my marriage might also be the best gift I ever survived. but, like I said, bitterness is cunning. It's forces me to remember crap that is irrelevant, inconsequential, and wants to distract me from the door to consciousness. Feels sorta like I'm in the basement and I gotta climb 10 flights of stairs with weights on my feet...got a long waaaayz to go....Bitterness is crafty bitch but, luckily, I'm a strong bitch. so the dance goes...

xo

Amelie's Mommy