She never seemed shattered; to me, she was a breathtaking mosaic of the battles she’s won.
One of my all time favorite photos of my “squad” popped up today as Lea was being sedated for her fifth MRI in six months. A lot can change in a year I thought to myself as I sat in the same room we were told the news of her tumor six months and two weeks ago.
Lea gave her last MRI the middle finger. It showed progression, but the last few weeks she has shown improvement. Maybe due to a jump in steroids. Maybe the trial is working. Maybe it’s a miracle. Maybe it’s just the mind f*** of this horrific disease. Our kid gets better, then worse, then dies… usually all within one year of diagnosis.
Lea jumping on a trampoline on Sunday
Every week I do a count. Current count: six months, plus two weeks. The weeks seem to pass more and more quickly, and I measure them in three week increments with every trip to Boston.
In years past I would wish for and welcome the spring. Today I find myself cringing when friends and acquaintances talk about the summer… the pool opening… the warmer weather… anything that signifies to me that Lea might not be with us. The remainder of that conversation is usually on mute as my mind is asking allllll the questions and I am quickly overcome with all the corresponding emotions.
Last week I scheduled something in May and found my eyes drifting to a special day in that month, Lea’s birthday on May 25. The pit returned as I wrote “lea birthday #7″ in pencil and dotted the “i” with a heart.
Lea’s 6th Birthday
Every day I tell myself that the worst possible thing I can imagine is going to happen. And I will be ok. “Lea is going to die. You will be ok.” Every single day I say those words in my head, as if it will keep it from coming true, or that maybe, just maybe, if I “prepare” enough it will make it even just a little bit easier. Most days I sit in defiance, knowing full well, I will not be ok…and then I will be better…and then maybe, someday, find happiness again.
I remember when Lea was first diagnosed it was months before I felt happiness. But here I sit, six months and two weeks into this nightmare with many, many moments of true joy and happiness. I know it is not the same, Lea is here, but it is similar? With time do you adapt to a new norm and find happiness again?
Lea looks and acts more and more like our kid each day. Her hair is growing back, she has lost some of the weight she gained on the steroids, she no longer needs or wears her glasses. Her defiant spirit has returned along with her spunk and sweetly singing voice. While it is wonderful, and I am so grateful, it makes it all the more difficult.
Lea smiling at one of the HUNDRED Beanie Boos she and her sisters received thanks to another outpouring of kindness and generosity from this community.
I know that this thing can take a sharp turn and head south any day. And that makes every single day that much more precious. I don’t ever want to be away from her as I am fully aware that this might be her last “good” day.
My mom and I sat at the edge of my kitchen island several nights ago, a glass of red in front of us. We discussed all the lessons we have learned and how this experience has changed us, and so many others. This horrible situation is doing good for so many, including myself. I have surrendered completely to my situation. I have been brought to my knees. I have felt the grace of God through the support of my friends, family and community. I have read notes from people who tell me their lives are changed because of Lea and our story. I am a better mother. I have learned to let go of control within my business and trust my incredible team. I have seen how much my family and friends love and support me, even at my worst and most fragile. I know what I want from my life and how I want to live each day. I have a new perspective on life and what is important. And I know it could be worse.
I surrender who I’ve been for who You are.
I told that to my friend and she asked me How? “How could anything be worse than this Christa?”
My mind flashed to all the people all around the world who are experiencing tragedy far worse than mine. Their family is without food, and they have no idea when they will eat next. Their children have been taken from them and sold into slavery. They are trapped in a war zone. They have watched as those they love are brutally killed. They do not feel safe. They have no access to medicine, healthcare or a team of doctors. They have no resources. They have no way of escaping from their current situation.
While my situation is one of the worst I can imagine, people throughout the world are enduring far more horrible things.
There are days where I throw my middle finger in the air, full of anger and all of the “WHY ME’s”… but most days I throw my hands up and fully surrender in the mud. So very thankful for the overwhelming amount of love and support we have surrounding us. For the random cards in the mail. For the thousands of prayers. For the random meals, bottles of wine, gifts and gift cards. For access to healthcare and several teams of experts within driving distance. For resources that allow us to pay our bills and do “extras” that have made these six months plus two weeks with Lea so special. For God’s grace and faithfulness. And for all of the sweet moments of joy we have had with Lea and all the lessons she has taught me, and so many others, about life.
#lessonsfromlea #bravelikelea #defeatDIPG