Dear Healthcare Professionals,
I’ve said this a thousand times but today is important. For the record my voice as his/her parent, caretaker, and advocate needs to be heard. It needs to ring from the hospital corridors and into your offices. Acknowledge my voice, understand I pray no matter what the diagnosis may be and I believe in God. I know though the diagnosis is grim I still trust and believe in God’s miracles. I have faith over fear. I have a mighty belief in his power please don’t plague it as a silly whim when it comes to my faith. It doesn’t mean I won’t trust your expert and scientific methods, or medication don’t condemn me for having faith.
Secondly, acknowledge my voice and don’t act as if I don’t know my child. Please listen to me and hear me because the goal is to work as a team I am valuable. Don’t assume I don’t know and the very moment act as if this never happen. Yes, I am emotional you're talking about my child not a specimen. I am angry and irate because I sat in an emergency room waiting for a bed, or just heard the worst news, a child of mine who is not ill will be mad because this evening I was suppose to be at her recital, his game, their play or celebrating their birthday but I had to be at the hospital. Do you understand what it is like to be a hero to one child and a villain to the others? Do you understand how I feel because I’ve disappointed the other children and we ate cake in the hospital room for the past three years? Please don’t tell me they should understand and it should be explained. Would you as a six year old understand? Maybe it is not your problem and only my concern I get it. I want to voice my opinion. I want you to listen and not just hear me.
Understand every day isn’t easy and for goodness sake have compassion. Have the ability to know it is deeper than you know. Stop saying to me you sympathize with my situation because I don’t want your sympathy I want understanding. I want you to have a realistic moment that it is hard to be multiple people, and still keep your sanity. There is no turn off switch and I as a parent is fighting like hell for his life, maintain sanity and employment.
Lastly, take heed and understand I am expert too if only in my child. I am an expert and I too sacrifice. I too fight and all I ask is you hear me the parent. All I ask is you make me a partner in his or her care. You acknowledge I am important and know I want nothing but the best for my child.
Parents of Chronically ill Children