You are braver than you believe, smarter than you seem, and stronger than you think.
Thanksgiving morning we sat cuddled up on the couch watching the parade. The turkey was in the oven cooking, I was still cozy in my jammies with fresh coffee in hand, and my girls were all around me. Thankful.
In years past I remember tearing up over the St. Jude commercial that comes on during the parade. You know the one… Marlo Thomas comes on to remind us to “be thankful for the healthy kids in your life, and give to those who are not….” Every year I would do just that. Thank God for His many blessings including my three healthy girls. This year I was on the other end of that commercial. “Those who are not.” Liv noticed my tears, so I made my way to the bathroom to clean myself up. Not today. Today, you hold it together.
I couldn’t help but be thankful for Lea and our Thanksgiving at home with her. She was not in the hospital. She was not hooked up to a breathing or feeding tube, like many DIPG kids are in their last days and weeks. She was with us. She is with us.
The day after Thanksgiving we packed into the car to cut down our tree, much earlier than in years past. “Don’t put off until tomorrow what you can do today.” That is a phrase I am living by these days. Do it. Today. Wear it. Burn it. Drink it. See it. Visit it. Visit them. Call them. Hug them. Love them. Today. You have no idea what tomorrow will bring. Do it today.
While stringing the lights on our Christmas tree I said what Mike and I had been thinking all day… “This might be our last Christmas with Lea…” The words felt like a punch in the gut.
We carefully string the lights while Lea naps and when she wakes up, we hang our ornaments. I have a few favorites I carefully position in the perfect spot while the girls put every ornament possible into the smallest space available to them. (Insert eye roll) One of my favorites happens to be the metal miracle ornament I purchased years ago… this year, like many things, it takes on a whole new meaning.
I pull out our family letters. There are 5 of them. M for Mike, C for Christa, L for Livia, L for Lea and K for Keira. I start to cry as I hand them to the girls and Mike. My mind wanders to next Christmas… what if I pull these letters out and she is gone? I decide to stuff it down, refill my wine glass, turn up the Christmas music, and enjoy the moment. She is here.
When I became a mom in January of 2009, like many new moms, I struggled with my “new normal.” I found the job so very challenging, and looked at moms of two, three and (gasp!) four in awe thinking “How do they do it?” Then I had number two, Lea, two years later, and quickly found an overwhelming new normal. Then… surprise! Keira is born three years after that. Yet again, I found a new normal as a mom to three amazing girls under the age of 5. Today, I can’t remember what my life was like before I was a mom. I find this feeling both comforting and upsetting. Knowing and experiencing that with time, we adapt and find a new normal means if Lea dies the pain will eventually lessen… but it also means that I might forget what life was like with her. I struggle to even remember what life was like BC (before cancer) even though it was only four incredibly long months ago.
I can’t look back at what our life used to be. It crushes me and renders me incapacitated. I can’t look forward at what we are not yet facing. It paralyzes me. Both prevent me from living fully present and engaged in the moment. I will continue to fight to find joy in our new normal, and whatever that looks like down the road.
Lea is the same. No better. No worse. She rocked climbed thanks to the amazing staff at City Climb this past weekend. What an amazing moment for us to watch. We head to Dana Farber on Friday for treatment number two of the clinical trial.
I am in a good place most days these days. I have moments, like on Sunday night when Lea pulls up a video of herself from last Christmas, all sparkly and perfect, face, voice and body full of light and joy. I feel so sad for what we have already lost. I continue to mourn the loss of that amazing girl. She is not that same person anymore and I miss her so much.
Lea one year ago
That same night I read about another child with DIPG dying. Twelve months after his diagnosis. I feel some of my hope for Lea die along with every child who loses the battle with this monster. I quickly count the months on my fingers… five. I have no idea how many days we have left with her, but I am determined to find joy and be present in each and every one of them, as I continue to be reminded how resilient the human spirit is. How much more we can handle than we think we can. How quickly we are able adjust to a new normal. I find peace in that, and in the fact that time heals… I hope.
Ways to Help:
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.
Blow-drys for Lea– Sunday, December 24 from 10am-2pm at Meche Beauty Lounge. Book here or call Meche today and book your appointment! 203.626.9963
For a miracle.
For the ability to find joy.