Balance is one of those words.  It’s trendy and people love to throw it around.  We hear it all the time in different parts of our lives whether it’s finding a work/life balance, or a balance between being a parent and our own self-care, or how you spend your money or your time.  Like the word breathe, the word balance takes on a much deeper meaning for me. And sometimes, what I’m balancing can seem like life or death.

As many people know, Aurora has battled with nausea for over four years.  Although the slogan of Boston Children’s Hospital is “Where the world comes for answers” we have no answers.  We know she has slow gastric emptying, which means she digests at a much slower rate than the average person.  But that doesn’t explain the extreme bouts of nausea and vomiting that she suffers from on a regular basis. There is no consistency to Aurora’s nausea.  She can eat something one day, have the same meal the next day and become violently ill.  There is no specific food, time of day or activity we can pinpoint as the cause.

During our hospital admission after Disney, at Boston Children’s, Rory received a pyloric Botox treatment. Pyloric Botox is a treatment where a small injection of Botox is used to relax a tight muscle at the bottom of the stomach called the pylorus. This helps food move more easily from the stomach to the intestines and can relieve the symptoms of nausea, bloating and stomach pain. In the past, this has given her relief for months at a time.  This time, I’m not so sure since we are in the hospital AGAIN for nausea and vomiting. She vomited and wretched for almost a full 24 hours on May 30th.  It is awful and this is no way to live. When she is in these extreme states of distress, we will do whatever it takes to make it stop. This doesn’t come without its consequences.

The medications she takes to help her get relief are causing damage to her heart.  So now, in these moments of distress we must balance getting her the relief she needs, knowing the consequences the medications can have on her heart. So now in moments I must balance her distress versus giving her medications that could send her into cardiac arrest. How is that a decision I can make? I can’t let her suffer, but I also don’t want to put her in harm. There are no good answers and every road leads somewhere I don’t want to go.

Nausea is a terrible feeling. She can’t live out her life, complete her bucket list or enjoy food she wants to eat. It’s the nausea that may kill her in the end, not her lungs. We are trying every alternative to the meds we can think of from edibles, acupuncture, to a neuroscience clinic. If we could get rid of the nausea, she could actually enjoy her life. Aurora’s comfort is my number one priority and advocating for her has become even more complicated and stressful.  I’m fairly certain I’ll be faced with these decisions in the Emergency room, in the middle of the night, watching my child in distress, alone.