Beauty, Cultures, food, Grandchildren, Hawaii, health, home, Parenting, photography, Religion, travel, Uncategorized

God Bless the Child Who Suffers

Baby Lily Ruth

The lyrics from a Shania Twain song beseeches God to bless the child who suffers. Halleluiah! Every time I hear it, I cry a little. It reminds me of my youngest granddaughter. In the womb, her backbone did not develop correctly so she would never be walk alone on this earth. I know that we all have something wrong with us, either physically, mentally, or otherwise. None of us are perfect. Our DNA may be tainted so that we are predisposed to certain conditions. God give us hope. We all need someone to hold our hand and help us through this life.

My journey with Lily began before she was born. Her birth was abruptly followed by two surgeries, one to close her back and one to put a shunt in her head to drain out extra fluid. She has had no feeling below her waist since then. Lily and her family have made the best of what she was given.

Lily was a poster child for a wheelchair company

Lily has a pitch-perfect voice and she is not too shy to sing alone on a stage before hundreds of people. Thanks to Friend to Friend, she is able to participate in musicals every six months.

Now it is ten years later and she just finished three surgeries. She has been blessed with goodly parents who have raised her to participate in many activities, no matter how hard. She has played softball, basketball, tennis, wheelchair dancing, and she recently rode in a hot-air balloon! There is hardly any limit to what Lily can do.

Lily skiing.

Lily had been so active going up and down stairs unassisted until her leg got swollen and it was discovered that she had broken one of her legs. Because of where her leg was broken, that leg stopped growing.

Lily is outgoing and makes friends easily. Her personality overcomes any obstacles that may get in her way.

Lily is very expressive in her dancing.

Lily’s father and siblings recently made a trip to the South Pacific with her Grandpa ‘Isi. For those with disabilities, traveling internationally can be very challenging. Third-world countries rarely have ramps or doors that open for wheelchairs. Lily stayed with her mother and waited for news from the islands. America is quite aware of and make efforts to help people in wheelchairs, but not all places are accessible. The LDS church just put out a video which is quite telling.

Thought provoking video.
Lily loves the beach. This was on a visit in Hawaii!

Lily’s family, including both parents and siblings, were born and raised in Hawaii. The medical care there was not sufficient to handle the needs of a child born with severe spina bifida. So, the family moved to Utah.

Primary Children’s Hospital in Salt Lake City as well as Shriners have helped immensely when she got sick or needed special medical help.

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Lily has brought so much to our family. More empathy, more kindness, more understanding, more service, and so much more. I can’t imagine my life without Lily!! I love her so much!


She has enriched our lives and make us feel closer to heaven. She recently gave me a ride on her chair lift up and down the stairs. Her parents have done all they could to meet her needs.

Lily Ruth Kongaika

We are so grateful she came to earth and look forward to a time when Heavenly Father will bless her with a whole perfect body.

Here is an exceptional young man with spina bifida who made the best of things, Aaron Fotherinham!

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