I don’t just carry the trial and trauma of Macey’s fight in my heart.
There was a day in September 2016, during active treatment, where I was able to articulate the heaviness of carrying other families’ stories in my heart too.
Macey was having treatment. She wasn’t in isolation (no cold or illness), and the day was routine — very much her new normal. She only let out a small peep when poked and was taking selfies with the nurses. The day was long but happy.
I realized that I was living in a world I never dreamed I would know. I think of the movie Patch Adams because the bald kids in that movie were so far from any reality I could imagine knowing.
You don’t anticipate a world where you’ve held a bald baby, watched her suffer, or are surrounded by other children, many worse off than your own.
The heaviness this September day was that of hearing the little boy beside Macey’s bed scream and cry and shout all day long, “Stop that. It hurts. Don’t do that.”
It included stories from moms living their own version of a nightmare they never thought they would face. It was the blonde mom I spoke with in the waiting room, her 11-year-old son in a wheelchair.
Her son had a tube down his nose and they were living separated from her other three children for months, after two years of battling sickness. He wants to go to public places and really misses swimming.
I met a mom that day whose 7-year-old daughter was diagnosed 3 months prior with bone cancer which had metastasized to her lungs. She told me that amputation was not an option because the cancer was not localized.
The boy in the bed next to her daughter was getting his leg amputated due to bone cancer. This lovely woman said her daughter asked if she would lose her leg because they were learning of Terry Fox in school.
There is the story so similar to ours of a 20-month-old girl like Macey diagnosed with rare cancer. The family also has two boys.
There are names — Hosanna, Molly, Mila, Thea, Tessa, Yanet, Lily, Evelyn, Sebastian, Lukah, Katie, Jack, Percy, Foster, Lewiston, Edwin and others I have met or journeyed with along the way. They do not all have Leukemia, but they all have stories.
All of these children and their families know of survival, strength, and living a reality they didn’t choose and don’t understand.
I have felt this heaviness often and I am at a loss about what to do with these stories other than keep the faces in my mind, check in with those I know personally, and pray.
There is no ‘fairness’ here. No one was bad or deserved this. These are children, with pools to swim in, and games to play. They shouldn’t know pain and struggle.
I don’t know the ‘why’ of it.
Some of these children fought until they could not fight anymore. Now their loved ones have grief awareness days and walk in an alternate reality of wishing they could complain about packing school lunches or messy houses.
I was sharing my story with a local storekeeper just before this September clinic day. I spoke of these stories. Her response was that this is the area of life that makes her wonder how there could be a God.
What I said to her is that as hard as it has been I can see joy in the darkness, and there have been moments of thankfulness in the ugly. I hope for all these parents, children, and connected loved ones that they see glimpses too.
Around this time I watched the movie “Miracles From Heaven,” which is based on a true story. The quote from the mom at the end (played by my doppelganger Jennifer Garner) was, “We live each day like it is a miracle because for us it is.” This sentiment is so true for our family.
The little things don’t matter the way they once did. I guess that is something I am thankful for.
We don’t know what will come next for Macey, but who does know? No one is “safe” from unexpected trials or triumphs.
I hope for you happiness, safety, health, and MOST of all the ability to live in the moment and let go of the reins.
If you are one of the names mentioned above (or one of the unnamed faces) I am still thinking of you, loving you from afar, and wishing for a way to help you as you walk through life with a different lens.
Life is not all hope and it is not all heavy. Hopefulness and heaviness can exist together. I hope you can experience that as you face the heartaches of life.