You do not get to choose the events that come your way nor the sorrows that interrupt your life. They will likely be a surprise to you, catching you off guard and unprepared. You may hold your head in your hands and lament your weak condition and wonder what you ought to do. To suffer, that is common to all. To suffer and still keep your composure, your faith, and your smile, that is remarkable. Pain will change you more profoundly that success or good fortune. Suffering shapes your perception of life, your values and priorities, and your goals and dreams. Your pain is changing you.
Laptops open, papers askew, Bridgett and I sit perched on the clear purple chairs in the back of the gym discussing to do lists, upcoming events and what felt like one hundred other things. At least. We went down the list…. check, check, check. “Oh and what about that email we got about your speaking at that event?” “It will depend on timing… when is it again” “April.” “That is the month my daughter is supposed to die.” I say the words matter of factly, not believing they are coming out of my mouth. Our fingers immediately stop typing, our minds stop racing and we lock eyes, which are now quickly filling with tears. We hold hands and take a few breaths together to recover from what I just said. “Ok then, so put me down as a maybe depending on what is going on with my life….” Check. Check. Check.
As a parent you are fully aware that you could lose a child… you just never think it will happen. You imagine it, then tell yourself no way, I cannot imagine… and throw a prayer of thanks to the Big Guy upstairs for healthy kids and a happy life. Or at least I did.
Mostly it is loss which teaches us about the worth of things.
Then comes the pain and suffering. The worst thing you could imagine actually happens, and you have to deal with it. Because really, what else are you going to do? I have a business, eight employees, three children, a husband, a dog, and a home… all things that need my love, care and attention. Want to or not (and there have been many days I have not wanted to) I have to face each day as it comes. One day at a time. One foot in front of the other.
I get asked a lot “How are you?” and “How is Lea?” (Those are my least two favorite questions to answer these days.)
I am as you might imagine. Caught in what feels like a nightmare. The days vary from really bad to not so bad. There are times when I feel sick to my stomach over our situation, swallowed in sadness, and so very scared about the future and what it holds for our family and Lea. There are joyful and happy moments within each day, and times when I am smiling… and mean it. Lately I have been smiling more… genuine, real smiles… and that feels good.
Lea is no better, which is worrisome, as they told us our kid might return “back to normal.” Not sure what would be harder. Never having her back, or having her back and then losing her again. Her temperament seems different these days. Every morning when I get her out of bed I hold my breath as I check her gait and balance. A Masters Degree in Occupational Therapy is certainly coming in handy these days as my trained eye quickly scans her balance, coordination, dexterity and strength. I let out a sigh when my checks are done and I realize she is the same as she was the day before. This monster moves fast. I saw it with my own eyes when overnight she could no longer walk on her own. We have no clue when the monster will strike again. She is two weeks into the clinical trial and is not showing any adverse reactions. We won’t know if this trial is working until the effects of radiation wear off, whenever that is. No one knows. Every kid and every case is so different. We will head back to Boston next week for injection number two.
We celebrated Mike’s birthday ten days ago. Lea shuffled over to him, smiling with pride, and presented his birthday card. The first thing that came to mind was if this was the last card she will ever draw him? And will I even get a birthday card this year from her on my birthday in July… the month we started noticing all those changes.
Just a wee bit later that day I scroll through my phone to find some pictures of Mike for the “I am a good wife” birthday post. The one where I post pictures of our happy family and say nice things, like how much I love him (I do) and what a wonderful man he is (he is). I stumble across a video I had never watched of Lea, taken in February when she was still all sparkly and joyful, back when she still had the light in her eyes and the joy in her soul. I can’t apply the right filter through my tears as I post the pictures of Mike and our family. But it doesn’t matter. Lea’s beautiful, sweet face smiles back at me through the screen. I miss that face so much. The steroids that keep the swelling down in her brain also make her unrecognizable. The other night while she was sleeping I put my hands over her puffy cheeks and there she was. My girl. Just as she was before. Or at least on the outside.
She has been going to school on Tuesdays and Thursdays. I love that she gets to be a first grader and do normal six year old things. Today at school meeting Lea was a part of the art project her class shared. As she sat on the floor with “her class,” her photos flashed on the projector and instantly Mike and my eyes filled with tears of joy. It was such a gift to see her up on that screen as a participant.
When people know they are going to die what do they do? They travel. They experience. They work less or not at all. They visit and spend quality time with loved ones. Things like overtime hours, “the daily grind,” the image you are portraying on social media, the number of likes, comments and followers you have, as well as what others think about you seem very small and insignificant. Lea’s diagnosis teaches me so much each day. Whether she lives or dies I made a promise to myself to continue to live the rest of my days, however many are left, like this. I wish I could change our situation, but I can’t. So I will choose to let all of the pain and suffering change my values, perceptions, priorities, goals and dreams for the better, and I will keep doing my best to smile through the suffering.
If Lea becomes another DIPG statistic this will be her last Thanksgiving with us. Every holiday seems that much more special, and so very bittersweet. This holiday, even in the midst of suffering, I have so much to be thankful for. The love, kindness and extreme generosity shown to us by so many, friends and strangers alike, has moved us deeply. Our family and friends continue to stand beside us and hold us up. Thursday as Lea sits next to us at the Thanksgiving dinner table, my smiles will be real.
Owl by LEA T-Shirts are available for purchase until November 26 (that is FIVE days away!). Order your Lea OWL tee here
Pasta Night Fundraiser– Thursday, December 7 from 5-8pm at the Dante Club on Memorial Ave in West Springfield. Tickets are $20 for adults, $10 for kids over 6, kids under 6 are free. Please contact Donnie Felix at 413-330-7399 to purchase tickets.
Yoga For Lea– Saturday, December 9. 1-2:30pm round robin adult class. All ages family class from 3-3:45pm. Breathing Room Yoga Center at 216 Crown Street in New Haven. $25 suggested minimum donation.