…something very beautiful happens to people when their world has fallen apart: a humility, a nobility, a higher intelligence emerges at just the point when our knees hit the floor.
Unlike the Macy’s Santa we saw just one day prior, the Santa at the Jimmy Fund clinic in Dana Farber knew better than to wish us health in the New Year.
I know it’s “the most wonderful time of the year,” but this year I felt much more akin to the Grinch, or Scrooge than my usual festive, merry and bright self, toggling back and forth between anger and extreme sadness… two emotions that now live with me day and night.
Sadness as I browse the Christmas cards and after a few moments hastily type “hope” into the Shutterfly search bar as the gold foiled “merry and bright” cards were burning my eyes. One card came up and that is what I went with. No hours of deliberation as in years past. No side by side comparison. Click, click, done. This years card was a reminder to me more than anyone else. It is easy for people on the outside looking in to say “Don’t lose hope!” But the angry part of me thinks every time “Your child was not given a death sentence by a disease that leaves no survivors. Your family is not a part of this nightmare. You are not the mom who is getting emails of support from other amazing, strong and brave moms who have already lost their children to DIPG… after 9 or 12 months of battling. You are not a mom counting the months left on your fingers, waiting “for the other shoe to drop” and for your six year old daughter to die.” I could lie and tell you that “every day I have a renewed hope…” but I don’t… and so I won’t. I made a pact to be honest to a fault with the story I tell here and so there it is, in it’s ugly glory. The hope on that card is a reminder to me.
As a part of this awful club you certainly meet some kind, generous and amazing people. We have been on a wild ride the past few weeks with Disney, NYC and Dana Farber all stacked one upon the next. I have not had time to write, or cry, or be, or any of the things I usually do to cope with our situation… which might explain in part why I have been in such a dark place during such a joyous time, and why I have so much to share tonight.
Our fun filled trips were like a tiny blinking light working so hard to cast some light on the darkest night. There was still darkness, but there were more moments of joy and happiness than usual. We saw Disney in a way that we never could again, and I am so grateful to Make-A-Wish CT for the incredible opportunity and all they did to make our visit so special and so amazing.
We returned home to find every home in our neighborhood (including our local fire department) glowing with blue Christmas lights to show their support for Lea thanks to the careful orchestration of our dear friends and neighbors. I was still smiling as I approached our side door only to find two enormous boxes of toys from Colin’s Crew with the instructions “don’t open until Christmas!” They were the first two boxes under our tree.
After being home for just three days we were able to see NYC in style thanks to the organization LivFree. We saw the Rockettes, dined at Carmines, stayed at the W Hotel (a Lea fav!) and had brunch and a shopping trip at American Girl. I continue to be amazed by the kindness, generosity and support from friends and complete strangers. There are some really amazing organizations out there, many that started from a place of tragedy, and our family has been blessed to be the recipient of many of them. Thank you so much. It means so much to our family.
Dana Farber the very next morning was especially hard for me this time. I was unable to hold my tears back and found myself taking extra bathroom breaks to dry my eyes. A children’s cancer clinic where your beautiful child is a patient is one of the very last places you want to be three days before Christmas. The little boy in the infusion bay next to ours was receiving his last chemo treatment. The staff came out with a cake and sang “happy last chemo day….” to the tune of Happy Birthday and I lost it. As I choked backed sobs I found myself wishing that my kid had leukemia. I know leukemia has a 90% cure rate to DIPG’s 0%. I’ll take those odds. But that is not the hand we have been dealt. I shut my eyes tight, kiss the back of her head, right where the monster sits, and pray as they give her back to back injections. I always pray for a miracle. Every single time.
Two days later is Christmas Eve, which is usually my favorite night of the year. A night I look forward to with excitement. This year it was met with sadness, and another round of “Is this our last ____ with Lea?” I meet Lea in the bathroom to do her hair for Christmas Eve and she starts to cry, big crocodile tears rolling down her full cheeks. She asks me through the tears and big staggered breaths when her hair will grow back. She tells me she doesn’t want people to laugh at her head because she doesn’t have hair, and that no hairstyle looks good. When I realize how much she knows, sees and understands I match her tears. I try to convey to her how amazing she is, hair or no hair, through my sobs. I tell her how sorry I am that she has a tumor and that she has to go through all of this. I tell her I would give anything to take it all away. I tell her how proud I am of her, and her bravery and strength through it all. I tell her that her friends and family love her because of how she makes us feel… how funny she is, how much fun we have with her, the conversations we have and the friend she is to us. That is why we love her. And then, I wipe away our tears, do my very best braiding work, and we hug, for what feels like forever, but still not long enough.
Later that night I feel sadness and a bit of nausea as I gently stuff Lea’s stocking, her name stitched neatly in ivory thread. My mind races to next year and I quickly have to slap it back to today. I have many of these moments a week. Moments where I get sick to my stomach thinking about life without her. It is an indescribable feeling to look at your child and know she is dying. To know her body is trying to kill her. To watch as her body fails her, multiple times a day.
I am doing my best not to lose hope, but right now, my only hope is in my great God. I do have hope that He will guide us through every outcome, even the very worst one.
Every blue light, every enormous cardboard box, every small gift, every colorful card, every kind donation, every fund raising effort large and small reminds us that we are not alone. Feeling that support is one of the things getting us through this time and we are so grateful for those that support and stand by us.
This blog started as a way to let the many supporters know how we were doing in a way that felt right, as well as an outlet for my stress and emotions. To hear the reach it has had is incredible. I have heard that Lea and our story has changed some lives, changed the way some are living their lives, made people think and act differently, as well as re-evaluate what is important.
My goal was not to inspire, it was to honestly convey what is going on, but I am so glad that it has. I am glad our tragedy is bringing about some good. Lea continues to be brave and strong in the face of every obstacle, smile sweetly and genuinely, and belly laugh heartily despite being dealt life’s very worst. If she can do it, so can I… right?
How is Lea? Lea is good. She is tolerating her treatment well. She continues to tolerate steroid titration well and we will be attempting to drop another .5 mg this Friday. With this drop in steroids it seems her amazing personality and sense of humor is returning. That has been such a gift for us.
How are you? I am struggling. We both are. Desperately wanting the joy, the hope, the light, and struggling to find it.
What do you need? We certainly don’t need any more owls or art supplies! I am pretty sure you have sent us every one in the US! Thank you for that! Lea can no longer sleep in her bed thanks to all the stuffed animals, and now sleeps on the floor next to them. Kidding of course! Lea received a kindle for Christmas and has been reading faster than we can purchase! Amazon gift cards to purchase more books are welcome, but right now we have everything we need. We will always take more prayers.
What do you want us to pray for?
- A miracle and complete healing for Lea
- That Keira will go the F to sleep every night without raging a war. Amen. 🙂