Certified Meditation Coach & Facilitator, Acting Coach (The Grounded Actor), Expressive Arts Coach, Theatre Director & Vice President of the Board of The Players (a historic theatrical club on Gramercy Park in NYC)
So precious, looking at me with those sparkling eyes. I can’t help but smile. She’s been so good all day, sitting mostly quiet by my side. Asking for attention but letting me go back as I need. I hate to disappoint her so I’m sure to bend down and give her kisses on her big ‘ole noggin.
I cannot understand why anyone would judge her simply for what she is. She had no choice, and we will love her all the more for it.
I can’t wait to be done with my daily commitments so I can get down on the floor with her and see that beautiful pink belly looking up at me as I give her the love, she deserves.
It’s time to emerge. Emerge and embrace where I am and what’s next. It’s certainly not what I planned but I think it’s something we all think about – How will I react sitting in a doctor’s office getting bad news? The dreaded news that your life is about to change. I realize now I’ve been wandering through life with the ignorance of a teenager who thinks or at least lives as if they’re immortal. Turns out that, well, WTF! I’m not!
I survived Meningitis as a baby and a brain tumor and surgery as an adult. Luck? Who really knows? It’s a silly question really. Luck is just a trick we play on ourselves when we don’t have practical answers.
This time, last year I went on a meditation retreat at the Omega Institute with Jeff Warren, he’s awesome by the way, check him out. It was amazing. I had never gone that deep for so long as we did. Over 100 people in a room, not to mention virtually, sharing space and energy. I absolutely thought more than once I’d fall asleep, but I didn’t. I stayed present, I was awake. Awake to myself, to commitment and belief that this was meaningful. Oh, and I had one of the best massages in my life, I get them fairly regularly – so that’s saying something. I will say there is something to be said about a masseuse who’s also an energy healer – but I digress, maybe another time.
After the retreat later that week, I started to feel off. I thought, wow, I went deep and brought up all the shit deeply embedded, and I was realizing it. Two weeks later I was still sick and now on day four of fevers, I went to urgent care, nothing. Went to my doctor; nothing. Test after test, then specialists: hematologist, infectious disease, rheumatologist, nephrologist – Check – check – check. Finally, the hematologist looks at me and says, well, something’s not right there’s a reason you don’t feel well. My blood numbers were off the charts. We clung to his words – I really don’t see this coming back as cancer. He was certain it was some autoimmune issue, and it didn’t take much to convince me to do a bone marrow biopsy when he said it was the most efficient way to find what was wrong.
After three months of tests, specialists, daily fevers, no sleep etcetera, he was right. I was sitting on the couch, two friends over, it was recommended I not be alone in case I fainted. I was severely anemic. We were sitting chatting and I got a call (I’d begun to answer numbers I didn’t know since all of this had happened).
It was my hematologist, very excited –
We got it, we know what it is, it’s Multiple Myeloma! I’ve called my colleague at the Myeloma Center, he runs it, and he knew what it was immediately. He’d absolutely seen it before. Here’s his number, he’s expecting your call. This is great news, this is treatable.
Great? Ah, thanks. I hung up, my friends only hearing mm-hmms and okays then taking notes. I look at them both and say – umm… It seems I have cancer. Multiple Myeloma, blood cancer. Now, I have feared blood cancer for years (ask my therapist), always afraid my good health had a hijacker. I had all these questions for years getting things checked because of a pain or a strange shift I felt in my body. Everything is normal, every time. I’d think – well, what can’t they see? I know my body, something is off.
It is a specialized illness and I clung to the doctor’s words, “it’s treatable”. I used them hard, and so did my husband, over and over.
I started treatment Immediately was out of work for six months and went on an educational trip through the internet trying desperately not to Google generally. Because yes, it is treatable, but for how long? Turns out this is a cancer that, though rare, is the second most common blood cancer in the world. Who knew? I’d never heard of it. In the past five years so many treatments have come to fruition -but – there is no cure, and it is guaranteed to come back. This is a lifelong, chronic illness, a ticking time bomb that I now must learn how to live with. That teenage immortality has been eaten away by vicious plasma cells invading my bones. I’ve learned a lot, I joined a support group, I’m taking a writing class, and I’m working on getting back to coaching after this lovely relaxing hiatus. Seriously!?!
This is honestly something that could kill me much sooner than my plan in life. It is also something that holds hope. I can live a good and long life. I’ve often felt when others have struggled or suffered, why me? Why am I OK? What did I do to deserve so much, and they not? Such fucking stupid questions! Sadly, it has nothing to do with what we do or who we are. This is simply the TRUTH – life is hard.
So – here is my new question and how I plan to see things as I move forward…
Why not me?
Why should I not be healthy – lucky – fortunate?
I can and should survive. I can and will be fortunate. I will live my life fully and for a long period because why the fuck not me? I’m young. I’m strong. I’m determined. I’m terrified, but come on, who isn’t? We’re all afraid. But it’s no reason to give up. It’s exactly the reason to get up and take that next step.
I am alive and I am grateful. Whatever your situation, I ask the same for you. We all deserve the best, so let’s work to make the best of the things out of our control while bringing joy to all the things in our lives that we can.
So now, I send YOU love and healing for whatever you might be going through.
How have you helped yourself through difficult times?
What is a song you play that makes everything better even for just a few minutes?
What is it about that song?
What do you do for comfort when you’re afraid?
Please share if you’re called to or know someone this could support.
As we sit here together today I take in every breath of you upon my chest. Today is our last day together. I have often thought, perhaps, wasted many days wondering if it would be the last but today I know it to be true.
I don’t know how to say goodbye and I can’t imagine you not here. Somehow its seems you’ve always been. You are what remains of the beginnings of our lives together. Though, I know in my heart that means a new beginning, I could never be ready for this end.
It was devastating when we lost Mojo, our precious boy, but you were here to help us through to remind us of our family and of our beautiful time together. The amazing hikes to mountain tops to watch the eagles soar over the valley, through the forest along the river to play by the waterfalls. Our mutual love of pizza, ice cream and pillows. We did everything together, saw our first buffalos and the first home we could truly call all ours.
I know I will never have human children but you will always be my baby girl, my bubby sweetie and the million other names I’ll add in the end. You are a daddy’s girl, and though sometimes it hurt, you always came to me when you didn’t know what else to do. A gift really, to know your counted on, trusted to help, and there when needed. I think I’ve been a good mom. That I can hold forever.
I still can’t help but question. I can’t say that there isn’t a giant piece of me praying that you’ll be the one to let go, to go when you are ready so I don’t have to wonder for years to come if I read the signs you gave us right or if I gave up on you. You’ve bounced back so many times, our little Tank, it’s terrifying to think we might be wrong. But, as we sit here, your tired body working so hard to simply breathe, you’re muscles limp, your body weak and you’re eyes…so tired, we know; we don’t want to, but we know it’s our role to do what’s right, no matter how wrong it feels or how hard and excruciating that is.
So, I sit here in the sun with you on my chest in the backyard of our beautiful home you’ve helped to build writing this love letter to your life. There will never be another like you, it’s impossible. You are crazy wonderful, fabulously annoying, impeccably irrational, and one hundred percent perfect.
I am truly a better person having been your momma, and Mr Mo and the Belly get to thank you and your brother for that. I know he and Shep will be waiting for you, that Joe will show you around and give you all the pizza you want. I pray there will be sunshine and waterfalls and all the beauty and comfort and love you can imagine. No matter what, I know there will be no suffering or pain.
You have made this world a place to be. Your papa and I will always hold you close, so don’t fear, it’s ok. You take our hearts with you. There is but one my love…we are but one.
I love you precious girl. I will let you go but I don’t think after writing this, I will ever say goodbye. You will always be a part of me and clichė as it is, true love can never die.
Namastè my love.
March 13, 2021, 11 am
Today you’re gone. Your adored little body taken away this morning. We knew it was our last night together, it was both the longest night of my life and yet one I didn’t want to end. I’m so grateful for the hours I had with you sitting on my chest, you looking up to be sure we were still there, and we were, feeling your precious heart working so hard.
We finally gave in to the need to lay down our bodies, and rest our heads. We set the bed, you between us hands on you trying to sleep but unable to rest, ever aware of every breath. We knew how uncomfortable you were and gave you that final dose of medication and a little sedative to help you sleep and give some relief.
Our hands on you at all times we heard you let us know. We laid close our hands together on you until you left us giving us the gift of not making us let you go. Our hearts bursting and tears rattling our teeth we gave you our hearts and souls one last time as we each held you and each other.
With broken hearts we wrapped you with tenderness then laid you in my meditation room wear we laid together for hours, fairy lights glowing, wanting to remember the love and not the loss; there can never be one without the other but the loss is full of joy for having loved you.
My sweet girl, you are as much a part of me as my hands and my spine. You will never be gone, you are an essential foundation of who we have become.
Thank you for loving us, thank you for giving us the world, for teaching us who we are and for letting us go so we didn’t have to. You are my heart and I will mourn you, I will let myself feel the pain so I can embrace your memory. I don’t want to hide from that gift.
Today we went to Miniwaska with the brindles to celebrate you. To remember our many hikes and laughs. Farewell my love, your body has left but your soul lives forever with us.
Happy Birthday my Love,
*Miss Shyann A.K.A The Bubby, Bubby girl, Baby girl, Sweet pea, Peanut, Princess, Princess PePe, Sophie (ask Grandpa Bob), Shy Girl (Grandpa Bubba), the pippee girl, the ole lady, the pillow princess, Beautiful girl, Bubba sweetie, Herself (Bill), Chicken butt, THE TANK
I wrote this speech 5 years ago while I was serving as Vice President. Today 5 years later and after 10 years of membership, my heart still warmly resides within the walls and amongst the ghosts.
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