Allow yourself to grieve. I remember the devastating pain I felt. I felt like someone had died and I hurt so much. At the same time I felt so guilty about my feelings. The life I had envisioned for my child was suddenly gone and I felt like our future was suddenly uncertain. It’s okay to grieve. You feel the pain of wanting to give your child everything, but some things are beyond your control.
(picture with very awesome grandpa who loved Michael so much and did everything with him. We miss him!)
I have wished a million times over the years that I could switch places with my son. I would give my legs to him in a heartbeat if it would allow him to walk and run even for a moment. But the truth of the matter is that these wishes will more than likely never be granted. It’s also important to move on to next phase of acceptance. You need to be strong for your child. You are his advocate.Seek knowledge.I have made many difficult decisions over the years on behalf of my son. Because cp is not a life threatening disease, many medical decisions are optional. It is important that you educate yourself. Speak to doctors, therapists, and other parents about procedures that doctors may recommend to you. You will be surprised at the wide variety of opinions you will receive from specialists within the field.
So what should you as a parent do? Be prepared to advocate for your child. Study, read, research, and speak to professionals. Knowledge is power. Find a support group in your area. Talking to other parents who have a child with a disability can be a large resource to you. These parents have similar issues and are very willing to share their experiences and resources with you.
One of my biggest sources of information was our local public school system. They have a vast amount of experience for children with disabilities. Their services are also provided for free. Once I received the diagnosis for my son, the school system began to send an occupational therapist and a physical therapist once a week to my home when he was just a year old. He continued to receive services until graduation at the age of 18.
Be open to changes.Our first specialist was located one hour from our home. After four years I decided to see what other facilities might offer. I made an appointment at a larger facility three hours away from home. I was impressed by their knowledge and their pro-active stance. I decided to change physicians and make the three hour drive several times a year (sometimes a month) for the next ten years. When my son turned 15 I again decided to see what physicians had to say at the near by hospital. I was surprised at their advanced technology.Document everything.Before visiting a new physician or considering a new procedure, make a list of questions to ask the doctor. Sometimes these appointments will feel overwhelming and it will help to write it down. Take notes at the appointment to study later.