Ruth Kongaika was born in the Rocky Mountains and has lived most of her life in the South Pacific. She travels, gardens and writes.
My Lily Ruth
The above picture is one of many with Lily smiling. Although she was born with spina bifida, her mind is not affected and she is a happy, bright little girl. She is now nine years old and is very smart and witty. She is very loving also, and always tells me (as her grandmother) how much she misses me when I don't see her for a while.
What to my surprise!
I recently went to a reception where I sat next to a little girl about Lily's age. She was totally blind and carried a cane. She was eating some pie and had to touch the food and then put it on her fork to put it up to her mouth to eat it. Of course, she reminded me of Lily although their disabilities are quite different. I talked to her grandmother who told me Ana is also very independent and has won several competitions in Braille. It made me wonder which disability would be worse.
I had orbital decompression about a year ago because of Grave's disease. I was very afraid that I would end up blind and unable to enjoy the beautiful creation as well as my love of art. It was a very traumatizing time of my life and I remember after the operation, the nurses shining light towards my eyes and being so happy that I could see it.
The last time I was with Lily, my granddaughter, we were having our normal chit chat and I asked her candidly whether she would rather be blind or be able to walk. She immediately answered that she would rather be blind. I asked her why, and she said at least then she would know how it felt to walk. Of course, my heart broke for her, but it made me think how we cannot understand what would be the hardest challenge to go through. Recently, Lily asked me to buy her some ballet slippers. She just wants to wear them.
Lily did take a dancing class when she was younger and is very expressive with her arms and upper body when she dances in her wheelchair. She is part of a group called "Friend to Friend", and twice a year, the director (together with many volunteers) puts on a show with children and young adults who have many different conditions. Many of them are disabled intellectually or physically. Lily is one of the few that is not mentally delayed by her condition. I love going to the performances and seeing the performers all doing their best to entertain family and friends.
Our little darling girl has taught all of our family many valuable lessons. She requires an aide at school since she needs catheterization four times a day. I learned how to cath her when she was younger. Her parents have had to sacrifice in many ways to take care of Lily. Both of them are brilliant singers and could have made a career with their voices, but instead chose to be there for Lily. They bought a house and make a ramp so she can go in and out of the house by herself. They also have a van that is wheelchair accessible to make it easier for her to get in and out. She has become quite heavy and so it is hard for anyone to carry her. Her father has injured his back always carrying her before.
Lily is my youngest granddaughter. She has been in the hospital multiple times and has a shunt in her head to keep her from developing encephalitis. She also is an ambassador for Shriner's Hospital. She is not shy, and loves to meet knew people and talk to them. She also has perfect pitch and can sing like an angel. She loves all the Disney shows and has learned most of the songs by heart. Her parents bought her a kareoke machine that she loves.
Lily has very loving and supportive sisters and a brother. They include her in most things they do. They help her be independent as possible, but help her when she can't do something.
Besides singing and dancing, lily loves painting, playing baseball, basketball, swimming and riding horses. Her parents have given her many opportunities to experience different activities.
Our children usually invite us to all our grandchildren's performances, which we love to attend. Lily reminded me that she will be performing this week with her group "Friend to Friend" and I can hardly wait. These performances are always so uplifting and motivating.
Lily as Annie in Special Needs Concert
Donate to Shriners Hospitals for Children
Lily's mother shares what it takes to help children with special needs.
I guess my biggest surprise was hearing that Lily would rather be blind than be unable to walk. It is hard for me to understand, but I'm sure for a while she would give up her sight just to be able to feel how it is to run, dance and walk.
We all have issues - I for one, have a constant ringing in my ears (which nearly drives me nuts), but I am grateful for the hearing that I do have. Not to be able to listen to music would be hard for me because I love it so much. If we could choose what disability we would have, what would it be? How about you? I'm sure we would have so much more empathy for others if we experienced a loss for even a short time.
If you could choose...
I have total admiration for those who despite their disabilities have gone on to achieve great things. They have overcome and given hope to others with similar conditions.
Lily inspires me every day. All of my 12 grandchildren are so dear to me.
© 2018 Elayne