When Ruthie Lou was alive we called it a “time out of time”. Time was passing in the world that rotated around us, but not in our life. In our life, time had stood still. And then after she died, then came “the after”.
The after time was filled with empty space. It was a quiet time, isolated, alone while the outside world continued on but we didn’t. Sure, there were meals delivered, text messages, invites from friends but a lot of time, there are was emptiness. So many hours that I just sat, whether in the backyard, on the couch, or on my bed. I sat there, in silence. No TV, minimal phone calls, moderately responded to texts. I just sat there with thoughts swirling in my head. And now, I couldn’t even tell you what I was thinking about as my brain jumped from one event to another, from one emotion to the next, from the present and then back to the then recent past of my daughter’s brief life.
Now I tell you this because I am both here in another time out of time while simultaneously sitting in empty space. When Ruthie Lou was alive, we had her to occupy us and to tend to, to make memories with. So the empty space didn’t occur until after she was gone and all we had left was ourselves.
But now, I have no distraction. My boys are not really here and when they are, I am in my bedroom to escape the noise, their energy, and a possible magic wand to the face. So, there isn’t much distraction in my day to day. I require minimal efforts to take care of and as long as my water is full (as well as my belly) there isn’t much I need.
On the days that Chris has been working (because I send him out of the house) and the boys are away (because I cannot tend to them) I just sit. In that empty space. I couldn’t tell you what I do with most the day.
I watch a little TV.
I do minimal reading.
I sit outside and watch the birds.
I respond to a text or phone call here and there.
I make sure my water (and belly) are full.
I open a card or gift or package.
But mostly, my mind wanders. Mostly to safe places. Sometimes to the scary ones. (I quickly get myself out of those.) I think about my sore muscles, what my boys are doing, that I should get up and walk around, and that I wish it were cooler so I could sit outside. I contemplate taking a nap, but although I am tired my brain won’t stop so I settle for laying down “resting” instead. I wonder when my last pain pill was and about tomorrow’s surgery, or how radiation and chemo will affect my body. Once a day, I make sure to flip my meditation cards and when I remember, I write them down and marvel how they’re so relevant to each particular day.
Overall, I consider myself in good shape. I allow my body and brain to do what it needs to process and heal during this time of little control. I listen to what I need and then give in to what that is. And mostly, it’s just sitting in silence… or a little music...or a sitcom to lighten the mood.
And I am grateful. I am recovering as expected from surgery. I am ready (mentally) for another surgery tomorrow. I have treatment options after recovery. My son can’t wait to see what my head looks like bald. My baby is oblivious to any change in our home or on my lap. And my husband loves me through all the good and the bad and in the times out of time. Again.
So, I am just sitting here in the empty space in another time out of time.
What’s that saying?
You want to hear God laugh, tell him your plans.
I thrive on plans. I love consistency. I hate surprises.
To feel safe growing up, I thrived on consistency. Unpredictability causes me such anxiety. So I have created a comfortable life, a safe life, a life filled with love. I have the kindest husband whose self-proclaimed motto is “nobody tries harder” and he couldn’t be more right.
I never felt more loved by him than in the days he parented Ruthie, in the months he had to care for me in my grief, and again last night when the surgeon called to say that chemo is recommended to my already scheduled treatment plan of 2 surgeries and radiation.
The thing is, my prognosis is good. This type cancer is super responsive to treatment. Those facts will not and did not change with the discovery of my lymph node capillary extension.
But, have you ever loved someone so much and felt completely helpless?
Maybe it was a hurt or sick child.
Maybe you watched someone suffer from a life-limiting illness. Maybe a loved one suffered from addiction or mental illness.
Maybe you had to call hospice and hold dying hands of someone you love.
It’s debilitating. It’s terrifying and it’s horrifying. And you would give anything to take it from them, but that’s not the choice you were offered so you have no alternative to stand by and bear witness to life or the ending of life. It’s awful. I know because I’ve done it, more than once. And now my husband has to do it again. And I feel so sad for me, but I feel even more awful for him. He doesn’t deserve this. Neither of us and nobody does.
So, another curve ball thrown. Another wrench in the plans.
Treatment is scary. I am hopeful, but terrified. I smile, but I feel fear.
The difference is, I will keep getting up and keep trying again. Because I refuse any other option.
So I will rock this badass scar (and most likely a bald head) with a smile on my face and tears in my eyes. Because this is life. Real life. And our job is to love each other and make the best of what we are given.
I love my husband (and babies) more than life. So, I am doing this for them. I am doing this for our life with the belief that it will be calm and boring again soon enough. I'm hoping for January...
Sometimes I am angry.
Sometimes I am sad.
Most the time I feel anxious and exhausted.
But, always I am a WARRIOR.
The past two months have been filled with grief. I am grieving the summer I thought I would have; time with my boys playing by the pool and getting to be a stay at home summer mom. I am grieving the end of breastfeeding Adam to which I was given one hour’s notice before heading to one scan that piggy backed another scan while facing surgery and radiation. I am grieving all the normal parts of life; having energy, deep slumber, my appetite, feeling peace, and being in charge of my own schedule. And the PTSD from Ruthie’s short life transferring into this experience is real and it’s hard.
But, I am allowing myself to feel all those feelings because this is how you move through them. It’s important for me to acknowledge all the energy flowing through my body. Moving the energy through allows it to release and reminds me to remember who I am at my core, while allowing who I am becoming to develop too.
I have a hard time catching my breath through the anxiety, but am reminded to breathe fully and deeply.
Falling asleep is challenging but once I am there, the dreams are full and vibrant.
My appetite is lacking, but once I take that first bite of fresh food I am reminded that food is life...and is tremendous joy in my life.
And music. Music raises my spirit always. Through the sadness I feel, the anxiety I am experiencing, there are so many nights where you will still hear music flowing from the windows of our home and a dance party happening in the living room or kitchen.
Life is (still) good. Ruthie taught me that through tremendous pain, there is tremendous beauty and lessons to be learned if you are open to it.
So, I am scared, sad, anxious.
And simultaneously, I am grateful, I am loved, I am supported, I am a WARRIOR.
I don’t want to do any of this, but I wouldn’t want you to do it either. So why not me? I am not naive to think that I am immune to hardship because I’ve experienced loss before. If I had to choose this experience between me and my husband, or boys, or family member or friend-if ONE of us HAS to do THIS, I would choose me over and over again because I know I will be ok. It will be hard, but I will be ok. And sometimes I wonder if it’s harder for those who love me. It’s so hard to be powerless in a situation watching someone you love suffer or struggle. Nobody deserves this, so why not me?
This is merely a bump in the road.
Let me remind you:
I am a WARRIOR.
...and please remind me when I momentarily forget!
I am mama of three beautiful babes; two sons whom I have the privilege of raising and my daughter who lived for 33 sacred days.