Monday, September 24, 2007

Epilepsy and adoption

It has been 9 years since my diagnosis. Looking back now, I have no regrets and no anger about what has happened. That does not mean that it has been an easy journey. Everyone handles their diagnosis of an illness differently. Everyone has to come to terms with what they are dealing with and manage it in the best way possible in their own amount of time. What I have found over the years, in meeting others with Epilepsy, is that everyone has their own amount of tolerance and some people may take a year or two to come to terms with living with seizures and then there are others who I have met who have still not reached that point in their lives.

I have met people who have had Epilepsy since birth, who carry around so much anger. I was diagnosed at 30 and was angry initially because I could not understand what happened to cause this to occur. Not knowing what the cause was drove me crazy. I am a very logical person. Things have to have a reason or an explanation, and yet I had no concrete data. The theory is that there was a brain infection. It sometimes makes me sick to think about it. How can one get a brain infection and did I miss signs of it? Could I have prevented it?

One of the saddest things, that I still think about often, was hearing my mother ask the doctor, "Did I do this to her? was it something that I could have done while I was pregnant with her?" It never dawned on me that my own mother would question "why" this happened also. And now, today, I can say that I understand why she asked the question. She too was reaching for some logical explanation and carrying around the burden of not knowing.

After three years of marriage, my husband was done with the experience of being married to someone who had seizures. We separated and then eventually divorced. It was a somewhat silent understanding. There was no anger; there was disappointment. He was disappointed that the person he had married had turned into someone else. I was someone who shook uncontrollably at times, who tremored when I slept, who felt faint often, had a terrible memory, and was so drugged most of the time, my personality was zapped from me. He had not signed up for this. Unfortunately, neither had I.

I have since remarried, and have a wonderful husband who is very understanding of my Epilepsy. He goes to the support group meetings with me and is involved in all of the activities that I am part of in regards to the Epilepsy Foundation and its work.

I was single for almost 7 years, between my first marriage ending and my marriage to my current husband. I was perfectly fine with not marrying again. But then I met my husband...

My husband was injured at the age of 17, in a horrific automobile accident. As a result, he suffered a traumatic brain injury as well as numerous other physical injuries. He went through the stages of a coma, and had to rehab, learning to walk, talk, swallow, and think all over again. He graduated his senior year of high school in spite of it all and went on to finish college at the University of Nebraska. He has spent the last 7-8 years working with brain injured individuals and is involved locally with the brain injury council and is starting to get involved with the legislative portion of people with disabilities like brain injuries.

Two months ago we travelled to China to bring our daughter home. We filed our adoption paperwork about six months after our wedding date. We received a call in January and were told that we had a little girl waiting for us. We travelled in July to bring Ava home to Nebraska.

The adoption process was extremely stressful. As I mentioned earlier, I had eventually accepted my epilepsy and my new husband had lovingly welcome everything about me into his life. But when we started the adoption process, my epilepsy got in the way again and I began to feel a little angry about it, even after all of these years finally feeling comfortable and coming to terms with my diagnosis.

The adoption agency received our application and phoned me. "Your application looks great! The only thing we noticed is that you have marked on your form that you have Epilepsy." You have to disclose all medical information when you file adoption paperwork. I had listed my Epilepsy, along with a fairly newly diagnosed pituitary tumor. The tumor was not an issue. But China did not find seizure disorders acceptable for adoptive parents. Apparently an adoptive parent had a seizure in Tiananmen square and no one was able to give her aid. Ever since the incident, China has been more careful about screening and accepting any type of seizure related disorders.

The adoption agency asked me to send them supporting documentation, explaining in detail more information about my seizures. I did this, and they were able to get a pre-approval based on the information I gave them. Mutliple times during the adoption process I had to back up my medical information with more documentation. I had letters and documentation from the neurosurgeon about my tumor, letters from my epileptologist, and my primary care physician. In fact, in May, two months before we received our travel approval, China came back to our agency and wanted yet more information on my seizures. They wanted to know... how many, what were the symptoms, what medication, how much medication, etc. I was so worried that they would eventually deny our application and dossier paperwork in China. I felt like I was on the edge of my chair for months.

In spite of all of China's lack of information on seizure disorders or their lack of understanding it fully, my husband and I were able to bring our daughter back to the U.S. with us. We would like to go back to China to adopt a second child, but unfortunately, China has changed their laws, as of this past May. These new laws will not allow a parent with a seizure disorder to adopt. Seizure disorders and other types of medical issues are part of their screening process now. Many of the websites and information that I have read regarding their new laws, place Epilepsy into the same category as bi-polar and some of the other disorders.

The theory is that China feels that they need the best parents possible to adopt the children that are left in China. They feel there are mostly children with special needs left in China and that they should have the best possible candidates for parents.

Our daughter came from the special needs or Waiting Child program. She was born with bi-lateral club feet. She now has a mother with Epilepsy and a father with a traumatic brain injury. We are the luckiest people alive! And who better would understand a child with needs than parents who have taken unbelievable journeys themselves?

I will always hold a fond place in my heart for China because they gave us the gift of our daughter. But I will also work very hard to make sure that the word gets out there about epilepsy and seizure disorders. In the United States, we are very fortunate to have so many services available for people with disabilities. There is still alot of misunderstanding and misinformation about epilepsy. I saw it in my marriage and I saw it through the adoption process.

If just one individual with Epilepsy could speak out about their experience with seizures to one other person, that shared knowledge brings us all closer to getting the word out. Read more!