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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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Playdate with My Youngest Granddaughter, Lily

Yesterday was a very fun day. My youngest granddaughter, Lily, her mother, and I went to the Loveland Living Planet Aquarium. I had spent quite a bit of time with my other grandchildren this summer, but this was Lily’s time. It was a day of surprises, delights, and laughter.

There was a butterfly room where a guide would let you have a butterfly for a few minutes. Lily was excited. One flew over and landed on my shoulder.

Lily Ruth gets her middle name from me! She is a joy to our family and very precious. God sent Lily to us and we have learned so much from her. Before she was born, I knew I loved her! I was present at the ultrasound on her mother when it was discovered that Lily had spina bifida. But, that little glitch has not stopped Lily from making a big impression on the world she lives in and all of us! She is 10 and loves school, singing, and playing with Barbies! She also is great at playing tennis, basketball, and giving her brother a hard time!!

Lily’s father and siblings are currently on a long excursion with Grandpa to his tiny islands of Tonga in the South Pacific. Tonga is not very wheelchair friendly, so she stayed behind with her mother. So, we made a playdate to have some fun together.

People can be very curious about Lily but she is used to it, so she isn’t bothered by it. I’m so glad because it was annoying to me!

The local aquarium is located in Draper, Utah, not too far from where I live. You can more about it at thelivingplanet.com We got there around 1:00 pm and stepped into a world of wild and amazing creatures. I had bought Lily a blue dolphin and she carried it around the whole time we were there. She named it “Bubbles”. 

A crabby crab! Looking for a fight!

As you walk in, there are several huge whales hanging from the ceiling! The aquarium is huge and has many passageways into different areas. The first corridor we went down was entitled Discover Utah. It was cool! There were land turtles and huge river fish. Some fish had humps on their backs. Utah has a few endangered fish that are in the aquarium. There were also ducks, salamanders, tarantulas, and other land animals. 

Pretty jellyfish, but watch out – the sting is very painful!

I enjoyed the jellyfish display (could stare at them forever)! A running commentary about the critters and sea life went along with “oohs” and “awws”, and a few shrieks and cringes. Lily told us what she had learned at school about invasive frogs in Australia and the traps they make there. 

By far, my favorite displays (along with Lily’s) was a huge two level tropical room where birds flew around you and it felt like we had stepped back in time and space to Hawaii! The air was moist and warm. There was a tiny little sloth fast asleep in a little pouch. So cute!

Lily, you are a star in my book!

Also, there was a great wall where you could peer into the undersea world with sharks and other sealife. It is awe inspiring. 

Another favorite was the penguin window. The penguins wobbled, walked on water (it seemed), and swam to our delight except for one big chubby penguin that looked as though he thought he was the king of the lot (too funny)!

Lily and I at the aquarium enjoying God’s creations

We got to see two movies in 4D. One was about the melting glaciers and global warming. The other was a cartoon of Ice Age (hilarious). As you watched, air would blow at the back of your head from the chair! Just when I got relaxed, it would blow again (stop)!

There is so much to see at the aquarium and we loved seeing the variety of creations that God has made. The whole time I was taking video on Marco Polo (it’s an app) and sending it to Lily’s family in Tonga so they could experience some of it too.

In one station you could touch the round coral and see the stingrays and starfish (they felt like velcro). Lily got to hold a starfish! Then she wanted to get out of her chair and touch the huge turtle on the floor.

Lily loving on the turtle!

At one time, I asked a guide where the place was you could watch the dolphins jump! Silly me, that was Sea Life Park in Hawaii where we often took our older grandchildren. Maybe they should have one here any way.

Here’s Lily with an anaconda much longer than herself (cringe)! She felt bad for some of the turtles that were not moving under the water. 

Lily acting brave by the anaconda!

The last place we went was a tunnel under the water where you could see huge sharks swimming overhead. I felt a bit vulnerable, but tried to act normal for all of our sakes.

As for wheelchair access, the place was great, but some of the exhibits blocked the few at wheelchair level. That was very unfortunate. 

All in all, we had a marvelous experience! Love you tons, Lily!