Friday, October 30, 2009

Serenity's Song

Her name is Serenity and she is 6 years old. She is beautiful, full of life and full of fun. She dresses in her own unique Serenity style, the more colors, the brighter colors the better! She loves play jewelry and brightly colored beads adorning her outfits. She doesn't care what anyone thinks, and she is amazing. She is bright and verbal and when she plays the giggles and screams reverberate throughout the house. She is loving and a snuggler and is a small beautiful gift from god. She is perfect. Her kidney's on the other hand are not.

Serenity is in kidney failure. She has weathered a series of surgeries from the time she was a baby. Surgeries to unblock ureters, place stents, remove stents, place nephrostomy tubes, remove them and replace them again. She had her "pee bags" that were attached to her nephrostomy (kidney) tubes that she refused to hide. She would swing them around and put them in her lap for pictures. All this in her short life and to no avail.

She now waits in MUSC (Medical University of South Carolina) still in pediatric ICU after they placed a shunt in her belly for peritoneal dialysis. She has fought fevers and pain and in between bouts, she tries to be "Serenity". She can for short periods but exhaustion kicks in at an alarming rate.

She is on the transplant list. Her relatives are being tested for a potential match. Her Mom and family members take turns staying with her and trying to keep her spirits up and trying to keep her as comfortable as possible. If no family donor is found, she will wait on the transplant list and eventually go home and do peritoneal dialysis at night until a donor is found.

For those who don't know, this means being hooked up at to a machine all night. This machine will do the job of her kidneys and remove the waste from her blood. She is the size of a 3 year old so no one locally will do regular dialysis on her. It is just too scary on such a small person. This is all just too scary for a 6 year old.

Serenity's mom is a nurse, and pregnant with her second child. A high risk pregnancy to boot. Her Mom is a lot like Serenity. She is beautiful and has the biggest heart of anyone I know. She is young, but so strong and has held up incredibly well through this. This is a parent's worst nightmare come true. To watch this beautiful little soul, your own flesh and blood be tormented is bad enough. But to face the thought of potentially losing her is something that no parent should go through, although so many do.

I pray, and I ask anyone who reads this to pray as well, that a donor is found soon. As long as Serenity is on dialysis she won't be able to go back to 1st grade. The risk of infection, or damaging the shunt in her belly is just too great. How her mom is dealing with all of the expenses of this I don't know. The insurance co-pays are huge, and I know she worries about how she is going to pay for it all. But that has so little importance in the big scheme of things. She keeps her focus where it belongs, on getting her child well.

Serenity has a whole lifetime of things to do and experience. She has to fulfill her job as a big sister in February when the new baby comes. She has to go through adolescence and discover boys and be a rotten sullen teenager. Then she will grow up to be the amazing person I know she is destined to become. I know the beauty of her soul as does anyone who has the good fortune to meet and spend time with her.

Serenity's Song is far from over. I have convinced myself that if I keep repeating this, that my thoughts and words will reach the cosmos and will make it so. And so I do. Serenity's song is far from over. I keep this on my lips, in my head and in my heart. It is her song, with all it's pain and all it's beauty, it is hers. I can't even fathom for that song to not exist and so I am putting this all in writing. It will exist in word for all to see and know. Her name is Serenity and she is 6 years old and full of life, and full of life.

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