“Mama, if Jesus came back today and healed Nani, I’d miss the Nani we have now.”

Tash, age 7

That’s when I knew. Hearing Tash’s declaration that day, so long ago, is the day I knew we were healing.

5 years of living with the impact of Nani’s diagnoses and the ensuing upheaval, chaos and stress left me concerned about fall out, for all of us, but especially my girls.

I wondered if their childhood would look like a minefield of emergencies and trauma.

And our longing for healing for her? How would that impact them? What if that was not God’s plan? Was I setting them up for disappointment?

Was our focus too much on loss and what Nani did not have, could not do? Would Nani’s sisters think we did not see her as a gift, but a problem?

I struggled to find the balance. I prayed for wisdom. I prayed for answers that would hit me in the face. I knew I was too fragmented to hear them otherwise.

A few years earlier at a parent meeting, we did an exercise to help us clarify what it was we wanted for our child with disabilities. My answer? I wanted to love her. I wanted her to be part of our family. I wanted her to know we loved her. I wanted her to know she belonged to us, with us, was one of us. That was truly my heart’s desire. Everything else? Just icing on the cake.

But had I conveyed that to her sisters? Did they know I loved Nani just the way she was? Cherished her Nani-ness even while I longed for healing?

Did they know it was OK for them to not only love their sister, but enjoy her, not in spite of, but with all her differences? Still OK to want more for her, hope for more, but see her as complete.

Did they know I saw her as fearfully and wonderfully made?

But the day Tash made that declaration, I knew. And all I could say was, “Me too, Tash. Me too.”

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