I'm Done with these Pixie Sticks!

For Halloween last year my parents bought my grandpa candy to hand out to the neighborhood kids. Apparently he was furious when he discovered that Pixie Sticks were, "just sugar!" He told my mom in a fit, "I'm done with these Pixie Sticks!" We thought it was hilarious and ever since that's been our families way of saying we were over something, done, exhausted to our very ends. That is how I feel right now.

Sometimes life is just so incredibly hard, isn't it? I know that Ruby is truly fine right now. My ever-growing prayer list is proof that there are many other children who can not be described as such. But one of the things I have learned is that just because stress is different for everyone doesn't make it any less stressful! Pain is pain, worry is worry, panic is panic regardless of how it comes about. I am NOT saying that me panicking about Ruby's tube/pump situation is the same as the terror or pain of losing a child or anything like that. I am merely saying it is still terrifying when happening. Does that make sense?

Anyway, saying that the last 24 hours have been stressful would be an honest assessment of events. Ruby's G/J was pulled from her body around 1AM, and after much confusion, anger, time-wasted, and sleeplessness she now has a MIC-KEY G. We were admitted to the hospital and experienced all of the awfulness that goes with it. Ruby was so scared, and will I'm sure be more touch-averse than ever after this latest stay. The poor thing was shaking at the sight of a nurse or stethoscope. We as parents often talk about having PTSD but there is no doubt in my mind that Ruby suffers from this worse than I could imagine. She is easily frightened and disturbed by crowded rooms and people touching her. When she encounters strangers for the first time she is extremely, if not painfully, shy. And every trip to the hospital, every time she is restrained, every needle that enters her skin acts to reinforce that PTSD. I truly hate the hospital and so does she.

As she gets older the look in her eye becomes more discernible as sheer panic and desperation. And she looks only to me, her mother, the one person who is supposed to protect her with such immense horror. She is undoubtedly thinking, "Why? Why are you letting them do this to me?" Sometimes it amazes me that she can still find comfort in my arms. I feel such a failure when she gazes upon me with that expression. And today I felt that same familiar pang after we were discharged and were finally getting comfortable at home, when her pump began to malfunction again. And then when we realized the MIC-KEY they had placed was leaking, I was done with these Pixie Sticks. I could not breathe, and I began to sob uncontrollably. I felt like a failure once again.

You see, when Ruby's tube is in place and her pump is functioning I find it easy to forget her utter dependence on this hardware. But when it all breaks down, I realize how I can not even feed my child without mechanical assistance. I could not keep her alive. I felt useless and unworthy as a mother. I know these feelings aren't rational but they exist when the mind is fearfully jumping from one thought to another. I am now more calm, but the burn of those emotions is still with me. I wish I could provide sustenance for my baby like other mothers can. But I can not.

Right now, Ruby is resting peacefully. The poor thing was so exhausted she fell asleep while I was changing her diaper. Her pump is working and new ones have been sent. Her MIC-KEY is still leaking but we can stay at home and take her in tomorrow if it is still leaking significantly. So far she is handling the G feeds well but only time will tell if we need to switch back to a G/J. Most importantly Ruby is here and safe. Thanks to everyone who offered support online, through phone calls or texts, or by being with me. I really do feel loved.