There’s my bride! Mike jokingly exclaimed as I entered “his side” of our gym early Saturday morning.
Oh yea, today is our anniversary… I mumbled as the athletes in the room clapped for us and Mike made another joke about the past eleven years being all rainbows and bliss.
Eleven years ago I stood on the alter in my satin gown and sheer veil and said the words “in sickness and in health… in good times and bad….” We repeated the words in front of our family and friends, not fulling taking in their meaning.
We had thought about our lives together and what we had “planned” it would look like…house, dog, kid, another kid, and surprise… one more. When you say those vows you have no idea what you will actually face together. Or at least, we didn’t.
Situations like ours sometimes rip families apart. This has brought Mike and I closer than ever and forced two independent people to lean on each other for support and join together as a team. I couldn’t imagine going through something like this without him. Eleven years in I am so thankful for Mike and as our relationship grows, changes and we weather life’s most terrible storms, I know I made the right choice in marrying him.
Let’s go out to eat.
I don’t want to. Two sadsacks at dinner? No thanks. Pass.
In the end, Mike wins and we end up planning to go to Geronimos, as at least I know I can get a much needed pitcher of margarita. Yes, a pitcher.
In preparation for our night out I give Lea a bath and get her ready for bed, brushing her thick wavy hair, which is ready to be woven into her two signature braids.
Her gorgeous hair starts coming out in fistfuls as I brush it and the tears start to flow down my cheeks. They told us this would happen, but I wasn’t prepared for what it would actually feel like, something I am all too familiar with throughout this experience. It never feels the way you think it will.
She continues to lose more and more hair and today she is mostly bald from her ears down, forcing me to very creatively french braid her hair every day. I refuse tell her about any of this. She can’t see the back of her head and I would prefer she remains ignorant to her situation, able to soak up all that is good in her world and enjoy her life.
A few nights ago Liv saw the large white bald spots that now are permanent reminders of this situation. My eyes grew wide and I pressed my finger to my mouth urgently so she wouldn’t say anything in Lea’s presence.
We sit in the playroom and chat after about Lea, the cancer, the light medicine, her hair loss and then she asks me the question… Is Lea going to die? I tell her that we don’t know, only God knows the future. God could perform a miracle and heal her, or they might discover a treatment that can help her…. pause…but most kids with Lea’s condition do die. I start to cry and Liv hugs me tight. It’s ok to cry mom she tells me, wise beyond her years and so kind. I know Liv. I have cried a lot and I am sure I will cry more.
I can feel your prayers at work. This week I feel stronger with less anger, less sadness. I am at peace, able to find joy and happiness much easier than in past weeks. I don’t run and hide when I see someone I know out in public, I actually say hello and engage. Many times they don’t know what to say, or do, or how to act, and that is ok. That is another blog I will write someday soon.
Through all this loss we have gained so much and grown in new ways. We have gained perspective and now see life through a new lens. We have gained a closer knit family and stronger relationships with our friends, who we have seen more in the past month than we have in the past year. We work less. We are more present. We have a new respect for one another. We realize how fragile life is and navigate through it with a new appreciation.
Lea is tolerating radiation really well and for the second week in a row they have dropped her steroid dose. She is still unable to walk on her own and her vision is still blurry, but she is acting more like herself each day, a gift far greater than a full head of hair or being able to walk independently (in my opinion.)
The doctor excitedly reminds us that we only have 10 days of radiation left. I tell him I don’t want radiation to end. I wish radiation could go on forever. This is the easy part. The tumor is shrinking, which means more and more of Lea come back each week. She is happy and enjoying life, teaching us new lessons on how to be brave and what is truly important each day.
Every time I think ahead to the future and what that might look like I stop myself and quickly push those thoughts and emotions away as I know it prevents me from living in and enjoying the now. And right now, I am at peace, happy to have our girl a few steps away, sleeping on the couch as my mom reads her a book.
Follow me on Instagram to see how we are finding joy and view Lea’s latest art creations.
Now on my blog is a gallery of Lea’s art as well as a list of upcoming fundraisers for Lea.