Meet the Author
-- Barbara Munster (Author)
I had an amazing opportunity come my way recently and was brave enough to take advantage of it. One year ago as I sat on a horrifically bumpy flight to San Francisco on the first leg of our journey to Hawaii, I finished a book called How the Lilies Grow: Considering the Needs of a Developmentally Disabled Child). It was written by a local woman whose daughter had encephalitis as a child, a condition of the brain which resulted in severe developmental disabilities. The book told the story of this woman's journey through heart wrenching grief and healing before special education existed as we know it today. She found strength through education (specializing in social psychology and public administration) and created resources for her daughter and others through training those who work with the developmentally disabled and programs to empower those with special challenges. Her work still benefits people to this day, and she is still working incredibly hard to make sure opportunities exist for people like Erik who have so much to give but are often ignored. I consider her a true pioneer.
For some strange reason, I spotted her name in some literature that came in the mail from our church. Her e-mail address was there, and I had the overwhelming need to write her a note telling my story and how she had helped me through a rough time, hoping I didn't sound like some sort of weirdo. To my surprise, she replied in the same afternoon and said she would like to meet both me and Erik.
She came to my door this morning with a plate of homemade chocolate chip cookies. She was the opposite of what I expected. I expected someone who seemed...well, old, a little tired-looking, and frail. For one thing, she was my height, if not taller, and her voice sounded a little like a cheerful song. She would go on to tell me that she began singing in some local groups because if she hadn't, she would have simply cried all of the time. In looking at her, it was very hard to imagine this wonderfully strong, comforting woman ever cried at all, even knowing the hell she had been through. And, let me tell you, this woman has truly been through hell. Her stories of the mental health care system of the 60s and 70s will always remain with me. She reported that her daughter, now in her 40s, resides in a new apartment now, a far cry from the conditions at the state hospital back in the old days, attends a day program for those with special needs, and has someone who cares for her at night.
Unfortunately, I was supposed to meet Barbara between services at church last Sunday. I explained what happened and my resultant absence, and she reminded me that God isn't only at church. He is working through so many people in the world surrounding our family. While I talked with her, I realized that I am letting my expectations of how life should look clutter the path we are blazing for our son once again. Church is just one example. I envisioned it as a comforting, safe, loving sanctuary for Erik and our family, and it may be at some point, but it certainly isn't now, and I can't force it to be pleasant or easy. She suggested finding something else to recharge ourselves spiritually instead of killing ourselves to do what is "normal" and "expected." In other words, she very kindly suggested thinking outside the box in terms of what feels right and is good for Erik and our family.
I described my quest to find a balance between obsessing about WS 24 hours a day and denying it exists at all. She very knowingly nodded and said she found that taking a more objective look through education regarding the brain and her daughter's condition provided her much comfort and guessed that my medical background provided me some of the same reassurance. She's right. It's amazing what one step back will do. It can enable you to strip yourself of some of the emotion and rawness that can eat a person from the inside out. A lot of the hysteria, obsession, worry, and guilt can be disposed of this way, at least temporarily, for me. When I step back into my life with a clearer, more clinical picture of what we are dealing with, I can cope with the daily challenges more effectively and, more importantly, understand Erik and what he might be tackling developmentally or physically.
I confessed to her that I drive around neighborhood playgrounds in a bizarre search for one without children playing there just so Erik can have peace. I told her how I am unable to attend regular play dates or many activities the mothers I know do. I told her of the fear I have of taking Erik someplace new with new people and strange sounds. If she was thinking I was crazy, she certainly didn't let it show. She said that although we walk different paths, we are still walking together and offered to be at my side anytime I needed her.
As she stepped through the door to leave, she made sure to say goodbye to Erik, who seemed to instantly love her, and asked if she could give me a hug. I said yes. As Erik and I watched her drive away, I felt as if a prayer had been answered.
She was right.
God works through a lot of people out there in the world. To meet them, sometimes you just have to open your front door.