The Bob Marley Pandora station plays through the speakers of our white rental car, as we drive down 5th avenue in our favorite place, Naples, Florida.
“What song is this?” Keira asks, as she always does with her curious three year old mind. “A lie” I mutter, just loud enough for Mike to hear and respond with a comment.
The song was Three Little Birds, a Lea favorite, and a lie.
“Don’t worry, about a thing. Because every little thing, is gonna be alright”… the song lies to me. “IS IT BOB?!?!” I scream in my head.
A few moments later the same station tells me about “a wonderful world” and then “don’t worry, be happy…”
All lies, set to a steel drum. I used to dance around the dark hardwoods of our kitchen to those songs, actually believing their words. Then, my six year old got the worst form of childhood cancer possible, and I started to see the world as an ugly place.
They call this the “honeymoon” phase of DIPG. The few months following radiation, when your child’s symptoms improve, often times to return to the perfect state they were in before the monster started growing in their brain. I call it a mind F***. False hope. Another lie.
Our second day in our favorite place, Lea walks independently for the first time in two months. (I shared this moment on my Instagram page if you want to see it for yourself.) While I am grateful for these improvements and more time with our amazing girl, the thought that everything might be taken away once again is too much to stomach, so I swallow it down, just like I do to the margarita sitting in my hand.
Our trip, although very different from past trips, is enjoyable. We swim, and laugh, and float, and dive, and eat and drink and rest. No hospitals. No daily reminders of this nightmare. I feel happy, most of the time, something I have not felt in months.
We take our family fountain photo, just as we have been doing for the past seven years. Ironically the fountain is broken, and it feels about right for our situation. This one stings, and my mind returns to those horrible places.
There are moments when Lea is sleeping, or beating grown adults for the hundredth time at Memory, and it is just the four of us. I wonder if this is the future for our family. And how does it feel? And will we be ok? Then I am jolted back to the now, reminded of how precious the present is. I do not know the future or what it holds, I need to stop worrying about what has not happened yet. I tell myself I have to prepare for what might be, but the truth is I don’t know so why do I do that? It is not serving me well. I must stop and savor every moment with our family now, all five of us.
The last night of our honeymoon ends with the most perfect sunset on the beach. Belly deep in warm, salty water, with a family of dolphins splashing just a few feet away, the sun sets on my family of five and I am reminded of all the beauty that I can still find in this world.
Ways to help: Upcoming Fundraisers for Lea
MOANA Movie Night Fundraiser Friday, October 27
Flair For Hair Cut-A-Thon FFH 19th ANNUAL PROOF
For Our Prayer Warriors:
Thank you for your prayers. They were working while we were away. You are amazing and we are so grateful for you.
Please continue to pray for Lea, that her tumor continues to shrink, and never returns.
Please pray for the team running the clinical trial, for wisdom and guidance in caring for Lea and the other children.
I am starting to feel very anxious about Lea’s upcoming clinical trial. Please pray for peace and the ability to find joy and happiness in the everyday with Lea.
Please pray for a Framingham, MA family who lost their 6 year old Devin today to DIPG. Pray for peace for them as they deal with the unimaginable.