As Ashley gets older she becomes more aware of her limitations due to her liver disease. As she learns what having a liver disease means for her daily life and her future, she hates life more. Her words to me today as tears fell from her face was, "I hate my liver disease, I wish I didn't have it, It's not fair." "I want a liver transplant now."
Her tears started after I reminded her that tomorrow she is scheduled to have an ultrasound and a full set of labs. Usually, this is not a problem and produces excitement from Ashley. But I suppose now at 9 1/2 years old, going to the hospital is not fun anymore. I suppose after 9 1/2 years of needles, ultrasounds, CT scans, MRI's, medications and restriction, one gets tired of the drama. All Ashley wants to do is spend the night over at her friend, Rachel's house. All Ashley wants to do is play with her friends without being interrupted with daily medications, and trips to the hospital.
As I explained to Ashley that I wish she didn't have liver disease too, the tears just kept falling. Her cries got louder and harder. It broke my heart that I couldn't do anything to make her feel better. She asked me if having a liver transplant would mean she would stop going to the doctors, having labs, taking medication, etc. And when I told her that at first nothing would change but as years passed the hope is that she would not need to see a doctor as often or require labs or other tests as often. The tears kept falling as she struggled to understand why this was happening to her.
What do I tell Ashley when she just wants to be a normal child? For nine and half years I have focused on making sure Ashley was treated as a normal child, that her life would be normal. But her life isn't normal, who am I kidding. A normal life doesn't include a liver disase, trips to the hospital, blood work, tests and a liver transplant. Her life isn't normal; normal is being able to spend the night at a friends house without worrying about a bleed, normal is being able to climb the monkey bars at school without an adult hovering over you to make sure you don't break a bone, normal is not having to worry about what your liver disease will do to you if you don't get a liver transplant in time.
As Ashley's tears fell, my heart broke.
Her tears started after I reminded her that tomorrow she is scheduled to have an ultrasound and a full set of labs. Usually, this is not a problem and produces excitement from Ashley. But I suppose now at 9 1/2 years old, going to the hospital is not fun anymore. I suppose after 9 1/2 years of needles, ultrasounds, CT scans, MRI's, medications and restriction, one gets tired of the drama. All Ashley wants to do is spend the night over at her friend, Rachel's house. All Ashley wants to do is play with her friends without being interrupted with daily medications, and trips to the hospital.
As I explained to Ashley that I wish she didn't have liver disease too, the tears just kept falling. Her cries got louder and harder. It broke my heart that I couldn't do anything to make her feel better. She asked me if having a liver transplant would mean she would stop going to the doctors, having labs, taking medication, etc. And when I told her that at first nothing would change but as years passed the hope is that she would not need to see a doctor as often or require labs or other tests as often. The tears kept falling as she struggled to understand why this was happening to her.
What do I tell Ashley when she just wants to be a normal child? For nine and half years I have focused on making sure Ashley was treated as a normal child, that her life would be normal. But her life isn't normal, who am I kidding. A normal life doesn't include a liver disase, trips to the hospital, blood work, tests and a liver transplant. Her life isn't normal; normal is being able to spend the night at a friends house without worrying about a bleed, normal is being able to climb the monkey bars at school without an adult hovering over you to make sure you don't break a bone, normal is not having to worry about what your liver disease will do to you if you don't get a liver transplant in time.
As Ashley's tears fell, my heart broke.
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