The wound is where the light enters you
We have a table of family photos that sits behind the couch in our living room. Today I went in and noticed one photo had fallen over. I picked it up and my face softened as five faces smiled joyfully back at me. It was one of my all time favorite family photos.
I went to stand it back up and it immediately fell right back over. When I studied it closer I noticed the frame was chipped in two different places and the kickstand that holds the frame up was broken. Isn’t that ironic, I though to myself. Certainly seems fitting for where this family is right now, a bit broken… a bit wounded, a bit feeling like my legs have been kicked out from underneath me. I laid it back down and added “frame” to my next Target run list.
I think one of the hardest things about going through this is that you feel like you are alone on an island. I know I am not alone. But despite the thousands praying and the strong network of family and friends we are blessed with, no one I know personally has ever gone through something like this. No one knows quite what to do or what to say. So they say things like “every thing happens for a reason, right?” Like the girl at the coffee shop last week when she saw me for the first time after hearing about Lea. The smile quickly left my tired face as I answered “No. I don’t believe that.” Or they give you books titled “How Not to Die.” Or they send you diet advice for your six year old on steroids. Or they tell you that “God only gives you what you can handle.” I am sure all those things were done with good intentions, from a place of care and concern, but they were certainly not helpful to me during this time. Maybe you have said or done something like this because you don’t know what to say or do, and that is ok. I have done similar things when faced with unimaginable situations that I could not relate to. What I have come to learn from my own unimaginable situation is that sometimes… ok, almost every time, saying nothing is more powerful than asking “How are you? How is everything going? How is Lea?” Sometimes a warm hug is better than a book or advice you found on the internet. Sometimes a squeeze on the arm is better than saying “everything happens for a reason, right?” And a kind smile is always better than a look of pity and sorrow.
Imagine one day you are walking down the street, the sun on your face, a skip in your step, and suddenly someone sprints (not runs, not walks, but sprints) up to you, rips your heart out of your chest and puts it into your hand. You stand in total shock, struggling to breathe and keep your feet underneath you, bleeding heart still pumping in your hand. Before they walk away they say, I have no idea when it will stop beating. It could be two weeks, it could be nine months. Oh, and there is no way to get your heart back in your chest.
All your friends, family and social media “friends” find out about your horrible situation and suddenly you are bombarded with advice. Rub some kale on your heart, I hear kale can fix this! Are you eating blueberries? Because you should. Are you eating carbs or sugar? Because you shouldn’t. Rub some essential oils on your heart, it will for sure put your heart back where it belongs. Think positive! That will help your heart keep beating. I had the same thing happen… except it was my toe… and they were able to re-attatch it… but I know exactly what you are going through. And on and on the advice goes, which only makes you feel more and more alone as everyone giving you this advice still has their heart in their chest. Where it belongs.
My own heart feels like it is ripped from my chest every time I think about life without Lea’s sweet smile or “I love you momma’s.” She is the only one of my girls who calls me momma. Or gives me hugs whenever I ask. Last week Liv ran by and I yelled after her, “Liv! Can I have a hug please? I need a hug.” “No thanks mom.” Keira buzzed by next and I posed the same question to her. “No mom. I’m doing something.” Lea came shuffling around the corner a few moments later, sweet smile across her face and I asked her the same question. She didn’t answer me, simply waked into my open arms wrapping her powerful arm around my neck. I helped get the other “less powerful arm” (Lea’s words to the doctor on our last visit) around my neck and soaked it all in. Every smell, every second of this embrace, thinking about how awful life will be without this incredible little person. Lea is different than my bookends Liv and Keira. She is cut from a different, and very special cloth. She slows me down and teaches me so many lessons. Lessons from Lea and it’s hashtag was actually started one month before her diagnosis. If you search #lessonsfromlea on Instagram you will notice the first post is from July 18, 2017. One month and one day before my heart was ripped out of my chest and handed to me.
Tomorrow is Easter, Lea’s favorite holiday. The pit returned as I pulled out three Easter baskets from the third floor. And again as I counted three sets of pajamas, three crafts and enough candy for three. There was a time where I wondered if she would make it this far, and I am so grateful she is here with us, but every holiday we ask “is this the last one with Lea…”
Lea’s last MRI showed stability. Right now, it does not appear to be growing, and it looks as if the tumor is dying. It could be from radiation, it could be from the clinical trial, they don’t know, and won’t know until about 9 months out. May. That dreaded nine month marker that most DIPG kids don’t make it past, and the month Lea is supposed to turn seven.
Lea and I have both had trouble sleeping lately. She has been up with headaches, which sends me to a terrible place. This past week she has been on the couch more and eating less as a result of another attempt at a steroid wean (or so we hope.)
We are hoping to make it to Florida one more time before summer arrives. It is Lea’s favorite place and we had such a joyful time the last time we went. We are hoping for one more glorious trip before we face May and beyond.
Lea has her next treatment at Dana Farber this coming Wednesday and another MRI and treatment is scheduled for April 25. Please continue to lift us up in your prayers. Prayers for sleep, for a successful steroid wean, for complete and total healing, and for one last trip to Naples. Thank you for your blue lights, tight hugs, “I’m thinking of you’s” “You are in my constant prayers” and cards of encouragement. You provide the support I often times cannot provide myself and I continue to be blessed by this incredible community. xo
#lessonsfromlea #bravelikelea #defeatdipg #morethan4