The greatest gift that I have come to receive throughout this journey of pediatric illness has been that of connection. Real, genuine, brass tacks connection. Connection to perspective, connection to gratitude, connection to fear, connection to love and most importantly human connection. The bonds that I have forged throughout the past four years have led to my ability to persist, rise and grow.
The amazing thing about true human connection is that it can happen in an instant…I remember the exact moment that I saw Kate pass by my hospital room door heading into hers, I recognized myself in her because that had been me just weeks prior…entering this unknown world of parenting a sick child. It was like looking in a mirror. We were connected before we even met. I had started down this path just before her…I knew the darkness that she felt and that if I shared my steps…showed her my footprints she would catch up and we’d walk it together. Our paths became one, we were no longer alone. There were long stretches where our prints could be clearly seen side by side and moments where only one set remained because we chose to carry each other.
A few weeks back I was feeling low…Riley had been cleared to get out into the world a bit more and I was struggling with what that looked like. Her body is so complicated and finding the balance in exposing her to enough of life to truly live is challenging to say the least. There are germs…everywhere. There is also her own body attacking itself and turns out I can’t control that anymore than I can the viruses looming on the playground. How do I justify preventing her from playdates but taking her into illness-ridden hospitals week after week? Is one really more of a necessity than the other? She's a child and one that requires vast amounts of medical intervention to be here and quality of life is a major component. I visited with a Mom who’s family I have been documenting up at the hospital one day after one of Rileys appointments…her daughter had just be re-admitted. We sat in the Meditation courtyard talking and watching Riley run around while her daughter napped upstairs in her hospital room. When we touched on the subject of “How much we can expose them to?” Keisha paused and said something that spoke right to my core. “I have to always ask myself…what are the things you are okay being left with?” That’s it. There is no right answer. Just the question of what you can be left with.
This life of hers is so unknown. But what are the things I am okay being left with? Days in the sun watching her run free…I’m okay with that. The sound of her belting “FASTER…HIGHER” as I push her on a park swing…I’m okay with that. Dipping french fries in chocolate milkshakes at the corner burger joint…I’m okay with that. Keeping her confined because of my fears when the doctors clear her…I’m not okay with that. Doesn’t mean it’s comfortable. I cringe the moment I see her hands grip the chains on the swing…I can feel the lump in my throat when she climbs into the tub with black bottomed feet from an afternoon outdoors…I seethe with white hot anxiety when I hear a child cough three places back in line to order food. But those are my emotions, my fears and I will not be left with that. I will hear them and sometimes I may even take their advice but they will not be in control. Not of me and certainly not of her.
That weekend I took Riley up to see Elsie…Kates daughter who had fought SCID with Riley during infancy. I needed to see her play…to see her with someone her own age and who better than Elsie. Watching the two of them jabber for hours on end, sprint across the yard and splash in the water I saw their path…it had started together in sickness and it was at a crossroads again in health.
Human connection…it’s not just for adults. I have no doubt in my mind that those two will walk through this life together while Kate and I sit back and watch. We will witness their prints…some will be clearly seen side by side and in moments where there is only one set it will be because THEY chose to carry each other. I'm okay with that.
All of my love to Elsie and big sister Bretta for giving Riley the perfect afternoon in the country. And to Kate...I've got you, you've got me, we've got this. I love you.