She's My Hero

Those of you that have been following me here in blogland for a while, know that my daughter suffers from something called Cyclic Vomiting Syndrome (CVS). C (age 8, turning 9 in November),  has suffered from this mysterious illness since infancy. She was diagnosed at age 3 by a pediatric neurologist at Hasbro in Providence, Rhode Island. Never heard of it?  You are not alone, although it is recorded in medical books back into the 1800's.

Cyclic Vomiting is just what its name suggests, vomiting in cycles. Every person's cycle is different. Many people have an episode after a trigger,( stress (good or bad) / or a food perhaps),  has been present. Others, like C, are triggered by time. C is what is called a "Calendar Kid". Since early childhood, we have literally put an estimate on the calendar, and have pretty accurately determined when C's episode was coming. Luckily, as her age has progressed, she has gained a few days each year. When I started recording at age 3, her episodes were 50 some odd days apart, in early 2012, they were hovering around 80 days.

Then, a miracle happened....the summer came and went....no episode. One hundred days....one twenty, one thirty....then this past Sunday, on the 154th day, an episode hit. We knew it was coming that night. How? Every time an episode is coming, C's world spins upon waking. Horrible nausea and vertigo rock her little world. She is then fine for the rest of the day; however, we know it's coming that night.

C always wants to stay up late the night an episode is coming. She knows that somehow, once her little body has fallen into a deep slumber, SOMETHING is triggered within her brain or stomach (this is the mystery), and the episode begins. Sometimes it's midnight. Sometimes 1:00 am. This time, she fell asleep at 9:00pm, and woke up vomiting at 9:45pm. I grabbed the bowl from my spot in her trundle, and prepared for a night filled with wretching, gagging, at times sobbing, speaking in tongues(that's what I call her comatose like confusion). Here is where we experience another cycle. Another oddity. Her starting cycle follows til morning. This time, it was 20-30 minute intervals. Yes, this 40 some-odd pound 8 yr old vomited violently every 20-30 minutes for 8 hours. We have learned not to try to stop it mid-way by letting her sit up and watch TV, because it will come back the next night to finish what it started.

This was by far her worst episode. What she bought in time, was stolen by this wicked illness. I knew that if it had returned the 2nd night, C would end up in the hospital from dehydration, and exhaustion. Luckily, it spared her the 2nd night, and as I kept vigil in her trundle again, praying she would remain in her peaceful slumber, my prayers were answered.

We both stayed home Monday, laying low, trying to recover. C suffered vertigo for a day or two, and then it was gone, C's life back to normal, her cheeks rosy again, her bubbly personality returned.

You'd think our little girl would be bitter, angry with her illness; however, she is not. She had a hip brace shortly after birth, wore a helmet, had torticollis, was diagnosed with CVS in 2007, and then  with Celiac Disease in 2011. Yet she is kind and giving. She lives life to the fullest EVERY day, breathing in what life has to offer, and spreading it to others. She, more than anyone else in this world, is my ultimate teacher. She teaches us all to overcome, to rejoice, to live. She's my hero.