Being an Advocate!

31 for 21 Challenge: Day 19

Again and again I learn that as parents of Wysdomn we MUST be the strongest advocate for our child. We have learned this from Wysdom's open heart surgery, several months in the hospital and a battery of medical visits and appointments. At first we used to think that professionals had all the correct answers and best practices in mind for our son. That the pediatrician would remember which medication they prescribed. That our doctor would have an idea of the side effects of the drugs they prescribed for our son. This has especially been the case when Wysdom was first born. I mean I have never had a baby with Down syndrome before, and especially never had a baby with a heart defect. Truly neither had any of my friends or coworkers. So naturally I looked to the medical profession to tell me what is best. What formula to use, how to feed him, what medications to go on and so on. This was really compounded by the fact that my son has a heart defect. That created a sense of fear and dependence on the medical field to help keep him alive.

Still all in all it is our right and responsibility as parents to ask questions? It is our responsibility to discuss things that are a concern to us and to get a second opinion if we are not sure of something. We as parents are ultimately the ones responsible for our children. For example, now when I am in the hospital I ask more and more questions. What is the name of the drug? What is it used for? What are the side effects? Why does he need it? These are things that at first, I took for granted. I used to just trust that the medical field would know more about certain matters and that the right thing would be done.

Over time my husband and I have learned that we can and must monitor and get the doses of medication adjusted when we feel it is needed or has been neglected by the doctors. It is us who double checks what he is being given in that tiny needle or syringe while in the hospital. It is us who states that our child is not well and insists extra tests. It is us that know how hard it is to get a vein for and IV site. We know our child best. This is not only the case in the medical field but also when dealing with therapists and other professionals. After having a visit from a therapist who stated that she had never worked with babies before, let alone anyone with Down syndrome, my husband and I were concerned. How could someone who states openly that they have never worked with children and have only done physical therapy for seniors, be chosen to work with our son. At some point in my life I may have settled for it, but not now. We have to speak up daily to ensure that we are getting the correct services and care for our son.

We are responsible for our child’s well being. I think this especially rings true for parents with little ones that are medically fragile and are exposed to numerous medications, tons of test and multiple surgeries. We the parents, are the central hub of all the information. We tell the ENT what the surgeon said and then we tell the pediatrician what the cardiologist said and so on and so on. There is no system developed for specialist to communicate and share information with each other. They often work independently in their own little area and often don’t communicate with others. We are the nucleus that takes in all the information and disseminates in to all.

We are there to comfort and love our child, to be their cheerleader but also there is a need to advocate on their behalf, to say what they cannot say, to see what no one else sees and to protect them with all of our being. We are their advocate and their voice!