LOVING SPENCER - How One Mother Discovered the Meaning of "Family"

When my daughter with LGS was a tiny baby, someone told me something huge. It’s funny how it seemed insignificant then. She said, “You’ll be surprised by who accepts her. And you’ll be surprised by who doesn’t.” Now my daughter, Spencer, is 14, and we’re living the truth of those prophetic words.

It took a while to kick in. When she was little, she was cute as can be! All little kids are cute, regardless of their health and abilities. Her family on both sides adored her. It was fun to play peek-a-boo, she was cute when she was naughty, and she was precious when she was in the hospital. Spencer was just like any young grandchild, niece, and cousin. In fact, it seemed that she was loved even a little extra because she was so special. But kids with LGS grow. As her body grew, her mind didn’t. She didn’t outgrow her diapers. She didn’t outgrow the behaviors. She didn’t outgrow the hospital stays. But, apparently, she outgrew her cuteness. And, as my child aged, most of her extended family faded away.

It was subtle at first. I was busy with the mammoth undertaking of preparing my sweet girl for elementary school. Orienting the team of teachers, aides, therapists, and nurses with my child, and willing myself to give up some control to this caring village, kept my brain busy and my soul on the ledge for months. The demanding management of an unhealthy child kept me from noticing her family pulling away. And, I’m sure, I didn’t want to notice.

A few moments stand out, like the day my daughter’s aunt asked me to stop talking to her about Spencer. Though she’s one of the strongest women I know, she explained that hearing about my child’s struggles was too much for her to handle. My shock and hurt at this admission didn’t faze her as she said bluntly, “Just tell me something good now and then. Otherwise, I’ll just look at her pictures on Facebook.” Once the rose-colored glasses are off, they’re off. It was then that I realized that one set of her grandparents were happily involved in their other grandkids’ lives…but not my daughter’s life. In spite of this, I know they love her. I know that all of the family members who intentionally

retreated from her, love her. I also understand that because of selfishness and fear, my sweet daughter will never feel the love which envelopes the healthy children in the family. Yet, as that darkness befell her, a bright star shone through: Spencer’s grandma.

Spencer’s grandma’s devotion puts her in the Grandma Hall of Fame. Like her other grandchildren, Grandma pines for Spencer when she’s not around. While the others choose to love Spencer from a distance, Grandma can’t see this special grandbaby enough, loving her deeply through the tough and the vulnerable and the silly and the pain. And because of her genuine love, only Spencer’s grandma receives all the benefits of Spencer’s beautiful personality and tender heart.

Over time, however, I learned that “family” can have many definitions. And now I see clearly that our lives are awash with rays of sunshine! There are those who love my child as though she was their own, even after Spencer’s time in their lives are done. Her former Sunday School teacher moved away and misses her dearly, continually sending her trinkets, books, and cards, while asking me for updates on her life. One of Spencer’s classroom aides visits her in the hospital and even showed up at her middle school graduation. Another former aide drops by on Friday evenings to see her sweet Spencer and give her heartfelt hugs, and the list goes on: side-walkers at horse therapy, a volunteer at her exercise program, and many more.

These wonderful people are open to Spencer’s beauty, and they feel their lives are enriched by knowing my child. I cherish those who cherish her. Like I was told…I’m surprised by those who don’t accept my daughter. And yet my heart is full, thanks to those who do.

Elizabeth & Spencer

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