“You and I Remain” — Day 18

It’s hard to believe it’s been 18 days since we found out about the tumor and the following diagnosis of AML (Acute Myeloid Leukemia) in my two year old daughter, Samar. The initial fear of diagnosis has disappeared and been replaced with the active role of adjusting, focusing and evolving, into the warriors, Samar needs us to be.

The impact pediatric cancer has made on our family has been swift and ever changing. My daughter won’t be home for months. Her brothers are dealing with the split family and the absence of either mom or dad. We take turns sleeping at the hospital, staying at her bedside. The other parent, often caring for her siblings, making their lives as normal as can be.

The unchecked emotions have subsided, and we’re in proactive battle mode, in the middle of Samar’s first round of chemotherapy. We are adapting to a new normal, figuring out the details as we go, partnering with pediatric cancer resources like unravelpediatriccancer.com, theyoungandthebrave.com or the hospital’s social worker, to help us out with things like finances, schedules, and alternative treatments.

My wife and I have become students, taking notes, learning terminology, understanding different drugs and their effects, monitoring our daughter’s day to day. We use this info so we can be better advocates for Samar, when nurses or doctors stop in and ask how she’s doing. We’re learning to read tables with acronyms, understand numbers in blood count, mastering ways in helping Samar deal with all the daily procedures needed to handle the side effects of chemotherapy.

It’s a tough new normal. It’s gut wrenching. It’s heartbreaking. It’s the difficult times that measure your aptitude for resilience in spite of extremely difficult circumstances. No one ever wants to see their child in pain. It’s a slow torture that easily sucks you into fears and worry. We’re told that when she grows up, she won’t remember the six foot IV monster she’s shackled to. She won’t remember the times she screams “Dah-di, Nooooo” as I hold her down, crying in tears, while nurses place eye drops to counter side effects from chemo.

But there’s a silver lining to this all.

A couple days ago, Samar had a fever, one of the side effects of one of the chemotherapy drugs. She was uncomfortably sore and no longer wanted to stay in her crib. I carried her in my arms and played music from a Slow Jam playlist, I often put her to sleep with at home. I swayed with her in our dark hospital room, and a particular song played in the background.

A good friend wrote a song for his wife titled, “You and I Remain”. It’s a beautiful composition he presented to her during their reception on their wedding day. He expressed his love and shared it’s meaning with everyone as a singing group, DnH, sang his song. It had to be one of the most meaningful memories I’ve seen between husband and wife at a wedding. There wasn’t a dry eye, in the house. Every time the song plays, I instantly remember the smile on both their faces. In the midst of a crowded room, as all eyes were on them, their eyes were only on each other. It brought a smile to my face as I held my daughter dancing with her to the song.

But as I listened to the lyrics a bit more, I began to cry. The song suddenly became more meaningful for me. It became my song with my daughter, in the middle of this dark hospital room. The beginning of the song starts…

Nothing has changed, I swear. I’m still the one to hold you when it’s cold. I’m still the one to make you smile when life’s impossible.
Just like before, I’m there. Still ain’t gonna be the one to run, baby, with this ring I swear in front of everyone.
I don’t know the obstacles we’ll face. And I don’t know the path we’ll have to take. We’ll figure it out, all the way, baby I promise we’re gonna make it. If all else falls down around, one thing won’t change, You and I remain.

This song became a personal testament to the road I’m traveling with her, on our journey to recovery. As I held her in my arms, all I could think about was the day we’ll have our Father/Daughter dance, and she’s found the person she wants to be with the rest of her life.

I shared my thoughts with my friend who wrote the song. This was his response.

Wow. What an honor. You know, it’s been over a year since I last listened to that song, so this morning, after reading this message, I played it on repeat. I listened to it from your shoes, and it took a whole new meaning. All I could think about was how powerful, how selfless your love is for Samar. All I could think about was how it’s our job as dads to make our daughters feel safe, help them navigate the tough times, and be their rock even when they may not see it. Right now, this moment, you embody all of that for Samar. I see it in your writing, your posts, the pictures. So thank YOU for that.

There is nothing more powerful, that gets you through your darkest days, than the support of the people around you. We are all connected when we face hardships. We have the opportunity to see inspiration and love from others. Since the first day we started this battle, there have been countless friends and strangers who have shared their experiences, offered their wisdom, and given their support. These are your “keepers”, the people who give you strength when it seems the world is at its end.

Samar’s battle with cancer will never be alone. You and I remain, in this room together. You and I remain, in the relationships we build together. You and I remain, in the love that is here to strengthen, guide and support each other.

Love exists in moments you let your heart reach instead of ache, believe in hope instead of fear, give love instead of grieve. ‪#‎samarstrong‬

My wife and I write more about our experiences on samarstrong.com. You can read about our journey together, and share the resources we gather, as we fight pediatric cancer together.

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