While Ed discourages me from reading too much about these children, I feel drawn to honor their struggle by reading about them and praying for their families. For weeks, I've felt this shift in my life. A shift very similar to when you become a new mother. You feel your lifestyle and interests and preoccupations pulling you away from dear family and friends. Not many people can understand the daily toll of a life threatening illness, nor tarry long with us under the shroud that cloak's our family. Truly, it is a heavy burden to be friends with me right now: I'm a distracted, watchdog of a mother married to a medication schedule and an infusion pump. Our daily living is measured in milliliters of input and output. After months of procrastination, I've finally found familiarity by joining a medullo/PNET support group. The simple act of reaching out to others directly affected by this was a huge relief. My friends are no longer my sole outlet for my frustrations. It feels good to move towards reclaiming my friends for me and not solely as a sounding board for our medical concerns. It's a foothold back into my old life.
Our life together now is a chiaroscuro: an interplay of light and dark. Moments of singular clarity and beauty pierce the struggles: Sitting on the floor, I looked up and watched Meaghan cradle her daddy's face in her hands and sing to him "Right Here Right Now" from High School Musical 3. Or when Meg asked Maddy for a hug after they've squabbled, "because I love you, Maddy." And the other night when Meg, Ethan, me and our two dogs were all piled on Meg's bed, snuggled under blankets watching TV. I want those moments branded into my memory.
Meg and I need those memories when we're sloshing through the rain to get to our audiogram appointment. I need those memories more when the results aren't what we'd hoped. Meaghan is already showing a drop in hearing for very high frequency sounds. The chemo is already eating away at her hearing. The start of hearing loss is a minor setback on our new spectrum of normal. Though it is certainly disappointing as we have nine more months of chemo.
We, as a family, are prayerfully pacing ourselves. We are cautiously making very modest plans for the upcoming summer. Anything less seems disrespectful to all those who have gone before us.