Requiem for Katie

A light went out in my life Sunday afternoon. My sweet 15 year old niece left this life. I was not with her when she died as I would like to have been. I was away making memories with six of my eight children, and my daughter in law.

I had the privilege of being with her when she was born. Katie had Spina Bifida, and Hydrocephaly. She had an opening at the base of her spine the size of an egg, and her head was the size of a two-year old's--on a little seven pound infant body. I stood there over her isolet in the NICU as silent tears slipped down my cheeks. I reached out a single finger and touched her tiny foot, whispering, "I'm sorry, baby." Immediately, energy zinged through my finger all over my body and I felt her say, "Don't be sorry for me; I am fine!" I knew in that moment, and have known ever since, that Katie was here on this Earth for a unique adventure and her soul embraced the opportunity for it.

Her life was anything but easy. She had surgery in her first days, more than a dozen before she was two years old, and several more over the years. She had seizures and apneas, often many times a day. She was confined to a wheelchair and never learned to walk. But she had a mother who was absolutely dedicated to her care, to giving her the best life possible. She was not expected to live past three years old. Her mother researched and fought for the best medical care available. She struggled with schools and agencies to make sure Katie got what she needed. At home she cared for her tirelessly, meeting her every need. I think it is significant that the only word Katie learned to speak clearly was "Mother." She had the most amazing mother ever.

Katie could not speak to express herself, and some may have doubted how much she knew, but she was definitely "in there" even if she couldn't get her thoughts out. She loved to laugh and found humor all around her--especially in injury. Some of her favorite sources of entertainment were a stubbed toe or a bumped head. She found the sight of her mother mopping the kitchen floor hilarious. When I tended her on Sunday mornings so her parents could go to church together, she got a real kick out of seeing me in hair rollers. 

But one thing Katie had no trouble expressing to those around her was her precious spirit. She emanated....something. I really don't have a word for it, but I know how it feels. Love, truth, wholeness, purpose, joy, and more, all mashed together into...a Something....and she emanated it. You could snuggle up next to her, or just lean a shoulder on hers, and absorb it. I am privileged to have felt it. I am changed by it even if I can't name it.

This year contained a lot of pain for Katie, and we were dismayed by the toll it was taking. These past few months, her joy has been all but gone and we could see that she was no longer loving life. While her mother researched and struggled and fought as hard as ever, there seemed to be no relief available for Katie. She was in the hospital more often than not, and we knew she was on her way out.

When she was hospitalized a few days before I was to leave with my family on vacation, I feared in my soul that she would not be here when I got back. I visited her the day before I left, and she wakened for a few minutes as I said goodbye. I told her, "I'm going away for a week, so I won't be seeing you for awhile. You'll be home when I get back." And when I put my hand on her face and bent down to kiss her forehead, I felt her say, "Yes. Home." And I believed she meant her real home.

I did not have the privilege of being with Katie when she died. I was where I needed to be, and I certainly did not want her to endure the days of pain until I returned. But I had the privilege of being with Katie while she lived. I had the privilege of knowing her, of absorbing her Something, of entertaining her with rollers in my hair, and with many a stubbed toe on the dang wheel of her stupidly designed hospital bed.

She is gone, and I am feeling her absence. I am also feeling her presence in the bits of Something she left in my soul. I am grateful her pain is over but, mostly, I am just plain sad that she is gone.