Fear. Such a simple word but one that is very powerful. All of us have felt fear at one time or another. It's a basic human emotion that one feels from time to time.
CCHS parents feel fear every day. We can hide it and not express it but it is there. We have a special kind of fear, the kind that most parents of children with special needs feel. There are the fears of our child's general well being--are they eating enough, is that little cough going to grow into a big sickness, are they going to be bullied in school. These are just simple little fears that even the parents of "normal" children feel.
Then we have the fears that occur with a rare disease--are they ventilated adequately, will our power stay on during storms, are we seeing enough specialists, should we send our kids to school during the flu season or keep them home to try to prevent them from getting sick, do we have enough supplies for the month and what do we do when things are backordered. These are small fears that we handle on a day to day basis.
Then we come to the greatest fear of all. The fear that our child will not wake up. This is a deep, paralyzing fear that we live with every single day. Most days we can bury it and go about our day to day activities. Then something will happen and the greatest fear will return with a vengeance.
Yesterday was one of those days. Our greatest fear was realized. The CCHS community found out that a little five year old girl named Lucy had passed away. She had a trach, like many of our CCHS kids and her day started normally. Then, as her mom stated, she "crashed like a rock". We are all devastated. Many of us (me included) did not know her or her family. This doesn't really matter. She is one of us. Her parents are in the fight with us, and we feel the loss also. A picture was posted showing her beautiful, smiling face and brought us to our knees. We saw a beautiful, vibrant life cut short and in her face we saw our own child.
This is our deepest fear. We try so hard to keep our children healthy. We fight the medical community, insurance, equipment companies, and schools to make sure our children get the best possible care. We hook them up every night to electronic equipment, checking and double checking everything to make sure it works properly. We sleep lightly (if we sleep at all) waking for each little beep and exhalation of air. We do everything that is humanly possible to keep our children alive. Deep down, we know that sometimes this may not be enough. CCHS is so unpredictable. One day your child is fine and feeling great, the next they are on the vent 24/7. This is our reality.
We cannot let the fear define us. We have to stay strong and provide our special children with a life like every other child. Most days this is not so difficult but every now and then it becomes almost unbearable.
Please remember Lucy and her family in your thoughts and prayers. Never take a moment for granted. Live your life to the fullest so that you have no regrets. Enjoy every moment.
Rest in peace precious Lucy. Your CCHS community mourns you deeply.