I know you are a good teacher…and I know you really do care about the well-being of my 16-year-old daughter. And yes, I am more than aware that she has missed a lot of school this year. But perhaps you are not aware that recently she received the diagnosis of “significant gastroparesis.”
Let me help you to understand what this means to her and her daily life.
Gastroparesis is the literal paralysis of the stomach. In short, her stomach does not empty properly. On days when her symptoms are flaring, she is dealing with chronic vomiting, diarrhea, nausea, gastrointestinal reflux and stomach pain. She also struggles to eat and absorb vital nutrients. There is no cure for gastroparesis and treatment options are very limited.
Perhaps you are not aware that she is on multiple prescription medications right now to help treat her gastroparesis symptoms, but there are no options left as there are only three drugs approved to treat this condition, and she is not able to take two of them because of her other medical issues. It might also help you to know that our local GI specialist wants her to be seen by a doctor located out of state at a Children’s Hospital who “specializes in treating the real sick, medically complex and fragile kids,” according to the nurse I spoke to by phone recently.
I know you are aware of her moderate to severe bilateral hearing loss, and that she has additional medical challenges, as I have sat in IEP (Individual Education Plan) meetings and explained each condition in great detail to you and the others at school. I am sure it is hard for you to relate to…as many of our friends and family members still struggle to fully understand our family’s challenges.
But please trust me that I have seen firsthand how pain affects my child. I have sat with her many nights while she has cried in pain. And, I have been with her through more than a dozen surgeries, including brain and spinal surgery. And, I was the only one with her when she had post-operative bleeding, not one, but two times…and trust me, I can do one hell of a Shirley McClain impression at 1:00 a.m. in the lobby of the hospital’s PICU.
Why? Because I know my child better than anyone else on this earth.
I know in my gut when something is really wrong…call it instinct or whatever, but know I have a damn good track record of meeting my kid’s needs. So please do not question my ability to read her pain levels and know I will do whatever it takes to help relieve her suffering.
Yes, I know it can be confusing, because when the pain starts to get really bad, she begins to shut down. Almost as if willing it to stop. When this happens, you and others might think that she is being lazy, stubborn or just plain rude. But I know differently.
When I see her eyes glaze over, her shoulders hunch and her head drop down, I know she is doing all she can to not give into the pain.
It makes me so angry that my baby girl hurts every damn day, both physically and emotionally.
In addition to dealing with gastroparesis, she is also dealing with chronic pain and fatigue from multiple medical conditions, including chiari malformation, Ehlers-Danlos syndrome, Klippel-Feil Syndrome, congenital scoliosis, congenital heart block, insufficient mitral valve, dysautonomia (causing hypertension) and hearing loss. Let’s not also forget the fact that at times she often feels depressed about her health challenges. Most importantly, please know that the pain and symptoms must be very severe before she will complain, because it has, in many ways, become her normal.
She is stronger than most adults I know.
This child, my beautiful daughter, has powered through premature birth, low birth-weight, multiple medical diagnoses, surgeries, lost hearing and developmental delays, both physically and socially, since the day she was born.
She is resilient.
Throughout her life, she has worked so very hard despite her pain, fatigue and hearing loss and she has become an incredible violinist, student and young lady. And through it all, I have been right there beside her each and every step of the way.
She has the strength of a warrior packed into her petite frame, but when she says she is not feeling well, she means it.
Please do not question her.
And know she continually “powers through” more pain and adversity in one week than most people will in their entire lives.
So please, be patient with her.
And most importantly, please know she does not need to be pushed as much as she needs to be understood.
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