Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up.
“There she is” I thought to myself as I drove Liv and Lea home from school on Tuesday. I could hear her sweet voice from the backseat of the car, and it sounded just as it did BC (before cancer). I smiled and imagined for a moment, my life was not flipped upside down and I was a mom driving her two healthy kids home from school. I love when Lea goes to school and life feels somewhat normal. Picking them up at 3pm feels amazing. Driving home with them chattering and laughing in the backseat makes me smile and I wish it could always feel this good.
Almost every minute of my day is different now. Everyday experiences have taken on a whole new meaning. Like when I put three pairs of matching fleecy Christmas pajamas up on the counter at Carters and start to cry, wondering if next year I will only be purchasing two pairs. Like when we are climbing the floors in the elevator at Smilow and two women are talking about the stress of the college application process and I hug her close, eyes misty as I wonder if we will ever get to enjoy that “stress” with Lea. Like when I all of the sudden have a limited selection of Christmas cards this year as a card with “merry” or “bright” or “happy” would be a big fat lie. Like how I get angry and jealous when I see healthy, happy families enjoying everyday experiences… like we used to. Like how I used to think three kids was just too much and how much easier it would be if we only had two. I regret every one of those thoughts and plead with God to keep me the mom to these three amazing girls.
Every moment of every day is different because of Lea’s cancer.
Every time I see this picture my heart breaks. Lea in February 2016
I get asked all the time “how I do it.” How am I able to show up and smile, and do my job with enthusiasm and energy despite everything going on at home? Imagine a box you would bring a case of wine home in. The box has these cardboard separators for the purpose of keeping each bottle of wine from smashing into another, possibly breaking one or both (the horror and shame!). When I go to work, I slide a divider securely into place, fully immerse myself in what I am doing, and shut the part of my brain off that is always thinking about Lea. In order to do this effectively I had to set boundaries. I asked the Tuff Girl community not to ask about Lea or how we were doing in that space, and for the most part, they have respected this request. Every now and then someone asks a question that feels like a jolt to my system and I feel the divider being tugged away. The worlds collide, the bottles smash, the smile fades, and for those moments I am unable to be effective in my role.
Their questions are coming from a good place… they have no idea what you are going through…I tell myself as I secure the divider once again.
Keeping this divider in place takes a lot of emotional energy. This might explain why I usually drive home with tears running down my cheeks as the dark reality of our life floods back into my brain just like the deep red wine that floods my glass once I get home feeling quite broken.
My role as a strength coach is one that helps people realize how strong they are. Almost every single woman that steps into our gym is stronger than she would ever imagine possible. My job is to help her (and him) realize what she (and he) is capable of and fully realize her (his) strength and power. I always knew that we are stronger than we realize and can handle more than we know.
Our current situation has taught me that the strength and resilience of the human spirit is the same. It can withstand far more than we ever thought possible. There was once a time where I “could not imagine” how I would handle the exact situation we are in, shaking my head no, no, no…. when I would hear about a family with our circumstances. And here we are… handling it. Sometimes it feels joyful, sometimes it feels happy, sometimes we handle it with grace and a brave face… but most of the time it feels like we are slugging through the mud, just trying to get through it, one impossible step at a time.
Before I had given birth the worst pain I had experienced was a broken bone, a very infected finger, and food poisoning. That was my worst. According to me, the most I could handle. Then I had three children without pain medication and set a new standard for what I could handle. I found a new “ten” on my pain scale.
As we go through life’s trials and tribulations, we are only aware that we can handle what we have proven we already can. And then something more awful, and more painful comes along, and we handle it. Again and again, we test our strength and resilience and again and again we (eventually) rise. We are stronger and more resilient than we realize. I hope you never have to face a situation like ours. But if you do, or if you are, know that you are stronger, braver, more powerful and more resilient than you realize. Keep getting up and moving forward, one unbearable muddy step at a time.
How is Lea? Lea received her second treatment at Dana Farber on Friday and continues to amaze us with her bravery and resilience. She is tolerating the treatment well and we were even able to go down a wee bit on her steroid dose. We go back to Dana Farber right before Christmas for her third treatment and she will have another MRI in January to see what the tumor is doing. She has been walking without help and has been (mostly) in good spirits lately. I feel like her strength and coordination is improving, which comes with mixed emotions.
She is in school two days a week right now and we love that she gets to be a first grader for a few hours a week. We enjoy and savor all the moments.
Many ask if Lea is “excited” for our upcoming trip to Disney (THANK YOU MAKE-A-WISH!) or Christmas. Lea doesn’t get excited anymore. The sparkle and shine has faded… the joy in her soul is gone. This is so hard for us as Lea used to be a spark… a live wire in the room. Now her flat affect and monotone voice is her new normal.
How are you? One day at at time and one hour at a time is how we live. I am so thankful to have Lea with us for Christmas. I have moments where my thoughts go dark and I have to shake myself back to the here and now. I have days where I feel completely hopeless. I have days when I have so much anger towards our situation and all the “stuff” that goes along with it. One wrong question asked with good intent, one “puppy dog” look sets me off and I turn into this bitter and angry person. I always let the feelings in, I let them brew and simmer and many times boil over. I cry. I write. I hit things. I lift heavy weights. I push my body hard. I drink some wine. I pray. And then I feel better. I have been diligent with self care as I know I have to care for myself throughout this process. I get a massage every other week and get to Tuff Girl at least three days to train hard. I go out with my friends at least twice a month. I love this fresh perspective, newfound strength, and sense of self… it just comes at too high a cost and I would send it all back in a heartbeat if it meant Lea would get to grow old. I have this constant fear that something bad is going to happen to Mike or Liv or Keira. All the sudden life seems so fragile… so vulnerable and breakable, just like those wine bottles.
Thursday, December 6- My family is putting on a macaroni and meatball fundraiser at the Dante Club in West Springfield tomorrow from 5-8pm. You can get tickets by calling my uncle, Don at 413-330-7399. $20 for adults and $10 for kids over 6.
Saturday, December 9- Yoga for Lea 1:00 this Saturday at The Breathing Room in New Haven. 1-2:30 and family class from 3-3:45. $25 suggested minimum donation per class.
Month of December- Basket Raffle at JH Hair Design- All month long the amazing women at JH will be selling raffle tickets for $25 each. One basket is filled with amazing goodies and valued at $600. They will also be doing a drawing for a runner up. Stop by to purchase tickets or get some hair love from these talented women.
Thursday, December 14- Jingle Bell Singalong with Musical Folk at 4:30 & 5:40. Suggested donation per family is $15. 24 Selden Street, Woodbridge, CT.
Photo credit to the amazing Rachel. Thank you for this incredible gift.