And every day, the world will drag you by the hand, yelling, “This is important! And this is important! And this is important! You need to worry about this! And this! And this!” And each day it’s up to you to yank your hand back to your heart and say, “No. This is what’s important.” -Iain Thomas
My eyes lit up as I approached the rows of colorful planners at Target. One of my favorite things to do each year is purchase a new planner, pages all white… fresh and clean and ready for a new year. Each year, before throwing the prior years planner away I flip through it, taking the whole year in at a glance. I looked back to where I was one year ago. Thinking back to then, I never would have imagined we would be in this place, dealing with something of this magnitude. The months passed quickly before my eyes as I flipped through the worn pages covered in ink and lead. Then I came to August. The worst month of my life to date. I looked back and tried to pin down the exact date I started to notice the change in Lea. I thought back to our last “normal” family vacation and the alarming changes we noticed in her. And then I came to the day they found the tumor… and the next day when she had the biopsy… and the days after that we spent in the Yale PICU… and the week after that when they told us of her DIPG diagnosis which gave her weeks to months left with us. The feelings of nausea, panic and worry are still so fresh in my brain and it was as if I was back at YALE, in that nightmare yet again. I closed the book unable to go any further through the year, which ended in a blur.
A new year means my oldest, Liv, celebrates a birthday. This year I decided to make her 9th birthday cake (and frosting) completely from scratch. I’ve been on this earth for 38 years and I’ve never made a cake from scratch, but one of the motto’s I currently live by is “there is no time like the present,” and so, I set out to bake my first cake.
I googled “the best vanilla cake” and then “butter cream frosting recipe” and sent Mike to the store with a list of ingredients I had never had in my kitchen before (as well as more butter than I had ever used at once). Lea and I spent the morning of Liv’s birthday together in our pajamas, baking a cake and mixing up frosting.
As I mixed the batter for what felt like an hour (bakers usually have large mixers, I learned) I sort of felt like that cake, being built from scratch. Or in my case, re-built. This experience has completely leveled me. It has forced me to reevaluate my values, what I want for my life, and who I want in my life. It has forced me to re-prioritize and has shown me what is truly important to me. This horrible experience has brought me to my knees and made me fully realize my vulnerability and humanity. Looking back at 2017, there are so many things in that planner I would never say yes to again. Things I would never make a priority again. Things I would handle completely differently. Things I no longer want. Things I want more than ever.
This was never more clear to me as I filled out a “passion plan” at a strength and conditioning workshop this past weekend. After I rolled my eyes and got over the activity presented to our group, I floored myself with that I frantically scribbled on that paper. What I want now for my life is completely different than what I wanted just six months ago.
In the past, a messy kitchen, paint all over my kids clothes and my beautiful new barstools, paper-mâché ground into my hardwood floors, and a table full of crafts would have sent me over the edge. Now, I know the importance of experiences and moments… fully present and engaged moments, over a clean kitchen, paint free clothes, social media fame, or the “appearance” of success. In the past, I wondered if three kids was too much, too busy, too crazy… now I beg God to keep me a mom of three girls, and contemplate having another baby if that is not His will.
In the past I would have told myself I was too busy to bake a cake and would have purchased one instead. Now I savor the moments that happen, the lessons you learn and the memories you make when you share things like baking a cake from scratch.
Livia’s 9th birthday card from Lea
Every day has value. Every day is precious… something that became painfully clear when we were told we only had weeks to months left with our Lea. Those annoying “Make everyday count!” memes that used to make me roll my eyes are now one of my mantras.
Choose to bake the cake rather than answer emails. Choose to sit on the couch with your kids rather than do the dishes. Choose experiences over things. Rather than filling your planner with things that don’t matter… that you don’t really want to do anyways… put yourself and your family first and say yes to the things you really want to do and the people you really want to spend time with.
The greatest good is what we do for one another. -Mother Theresa
Lea continues to bring this community together. Your love for her and for us is mind blowing and I continue to stand in awe of the fierceness of this community. We have experienced such generosity and kindness from friends and strangers and it always makes me so emotional. There are kind, loving, generous people out there. You bless us daily with your gestures and generosity. Last night as I drove home from work I noticed bright blue lights on a home I had not seen before. Those blue lights serve as a reminder to me that we are not alone. We are supported and loved by this community, and it means more than you even know. Thank you.
How is Lea? As far as we can tell, the monster is still sleeping. Radiation has taken away it’s size and power and given us our girl back. One of the worst things about DIPG is that you never know when it will start to grow again, and once it does, we know the result. It crushes me to think about. I still hold my breath every morning when I go into her room. I start to breathe again once she tells me she feels good and I watch her walk. She had treatment number four at Dana Farber on January 12 and we return February 1-2 for a MRI and another treatment.
We have cut her steroids dose down to .25/ every other day, which has started to bring down her puffy cheeks and belly, and brought back her amazing personality, sense of humor and feisty nature. Her hair is growing back, and she looks more like herself each week. Her humor is back along her defiance and feisty nature. I have never appreciated it more.
How are you? I have been in as good a place as I can over the past few weeks. I can keep my eyes dry when Lea talks about when she grows up, or when she turns 12, or when she has a baby… things that probably won’t ever happen for her. I am getting better at enjoy the present with Lea and have been less sad. She is here, she is stable, she is laughing and making me laugh, and I am soaking in every precious second with our amazing girl.
Many of you may have seen this post on USA today that I shared on Lessons From Lea. When I saw that photo I started sobbing. The photo clearly expressed how I feel inside every day, I am just getting better at hiding it. I guess I am getting used to this horrific situation. It’s funny how time does that to you.
Every night I kiss the back of Lea’s head, right where the monster sits and her hair is starting to grow back and beg God for complete and total healing…. for a miracle.
There is a Paint for Lea fundraiser on Monday, February 19 (President’s Day) at the Clay Date in New Haven. More info can be found on our Fundraisers page.