Several months ago, I was walking out of my doctor’s office after a routine appointment and I saw a mother struggling with placing her child in a wheelchair. It appeared that the child’s disability was a permanent one and I imagined her possible sorrow at seeing healthy children walk and run and play. Author Mary Evelyn Greene also had those images of perfect parenthood. A practicing environmental attorney and college professor, she had adopted two toddlers from Russia in 2004, and her book, When Rain Hurts (Red Hen Press; Sept. 2013) is the story of her quest to find healing for her son damaged by fetal alcohol syndrome.
We interviewed Mary for this month’s issue to coincide with Fetal Alcohol Syndrome Disorders Awareness Day, which falls on Sept. 9.
Lori: You tackle several issues in your book; namely, overseas adoption and fetal alcohol syndrome (FAS). What have you learned from each?
Mary: International adoption, and I can really speak only in terms of Russian adoption, is complicated and imperfect. Even more so now than when we adopted due to Russia’s decision to close its program to Americans. There are good agencies here in the U.S. and there are, unfortunately, some bad ones. The same can be true of the individuals and groups working with orphanages and parents in Russia. The process is very intimidating, but this shouldn’t deter one from seeking all of the health and family history information necessary to make an informed decision. In addition, protocols need to be developed between Russia and participating countries to better ensure on a systematic basis that prospective parents have access to the information they need and, equally important, that they are properly educated about the risks prior to traveling to Russia.
In terms of what I’ve learned about FAS? The most important thing I’ve learned is that nothing in the literature — whether academic, medical, or anecdotal — adequately describes what its like to live and love in the presence of this devastating disability. It’s the reason I wrote [When Rain Hurts]. Reading what the symptoms are and what problems may occur as a result of the brain damage does little to prepare a parent or other caregiver for the day-to-day responsibilities and challenges of raising a child with FAS. It is a devastating disorder with lifelong ramifications, even for those more mildly affected.
[FAS] is a devastating disorder with lifelong ramifications, even for those more mildly affected.
Unlike autism, FAS is 100 percent preventable and is directly caused by prenatal alcohol consumption. There is no getting around the fact that, if a birth mother abstains from ingesting alcohol during her pregnancy, her child cannot possibly suffer from FAS. A mother doesn’t want to believe she’s damaged her own child, doctors don’t want to accuse mothers of causing irreparable brain damage (sometimes even in the face of overwhelming evidence) and society is not yet ready to embrace the fact that alcohol consumption during pregnancy, even in moderate and/or infrequent amounts, can permanently alter a fetus’ developing brain — and is more damaging to a developing brain than most illegal drugs.
As a society, we believe that only bad people harm their child. FAS tells us that even good people can make poor decisions, sometimes ignorant decisions, that have dire lifetime consequences.
Tell us about your writing process for this book? How effective was your journal in the completion of your work?
I started keeping a journal long before I decided to write the book. Like the photos that appear in each chapter, I felt the journal entries also provide a snapshot in time to compare against the more linear chronology of our story. In other words, the chapters tell the story of how we became a family and what we did to help reach our son, and the journal entries tell the story of what it means to live with FAS on any particular day. I think the two complement each other and give a more complete picture of FAS than either would alone.
I wanted to be starkly honest about the impacts of FAS on a family, without the kind of made for TV sugar-coating that so often accompanies memoirs and other personal accounts
What feedback from readers of your articles and book surprised you?
I wrote the book to help people and to bring awareness to the grossly under-publicized issue of FAS as well as the damage that institutional (orphanage) care exacts on international adoptees and their families. I wanted people to know they weren’t alone, that there area others struggling with similar issues in an imperfect but earnest way. I wanted to be starkly honest about the impacts of FAS on a family, without the kind of made for TV sugar-coating that so often accompanies memoirs and other personal accounts. What I didn’t expect was the overwhelming outpouring of support. I had intended to offer support, but I’ve received far more than I’ve given. Readers express encouragement, gratitude, they offer advice and worthwhile, mostly gentle criticism. That was a wonderful, restorative surprise.
Was giving up ever an option? That’s a tough question, I know.
Giving up on our son was never an option. I don’t think I could have lived with myself, and same goes for my husband. But many people, including professionals, suggested we consider relinquishment. Unfortunately, I think there are instances where it’s warranted for the safety and health of the individuals involved as well as the safety and health of the rest of the family. Some children are just too damaged, and not all prospective parents are equipped to handle all children. But we were never there — not psychologically or realistically. Although I often felt (and sometimes still feel) that we were at the zenith of our capacities, I always felt there was a path forward and that I would find it if I just kept trying. Part of the real beauty in my journey has been the discovery that my children and I were capable of forming bonds as strong as any forged from birth. But I also know that I was lucky. Others try just as doggedly but aren’t able to find that path or forge those bonds.
How is life with your children now? What activities do you all enjoy together?
Both our kids are doing quite well. Our son has “graduated” from his residential school (Green Chimneys) and is now attending a wonderful special education day school in our area. We moved from New York [City] to the D.C. area this summer and, despite a few rough weeks in the beginning, the kids have transitioned remarkably well. Peter continues to build on the coping and social skills acquired at Green Chimneys and is very proud of all he’s accomplished. He’s on a soccer team and is even attending a mainstream summer day camp for the few weeks he has off from school between summer and fall sessions. He requires much more structure and routine than most, but I think my husband and I have finally gotten that part figured out.
As a family, we like to play board games after dinner or watch movies or play horse (basketball) in the driveway. Pretty normal stuff. On the weekends we opt to be outdoors whenever possible, either swimming, playing sports, exploring the countryside, canoeing or even antiquing. Also, now that we’ve moved to the D.C. area, we have a long list of Smithsonian museums we plan to visit!
What do you hope the future holds for you and your children?
There was a time when I spent countless hours worrying over what the future would bring for our kids, especially Peter. I’ve learned to stop doing that. I hope that Peter reaches his full potential, whatever that is. For my part, I can’t wait to find out. He’s just turned 12, and he’s already accomplished more than most experts ever thought he would. I can now say that he possesses a fully developed capacity to both receive and give love, he knows that he is loved, he is kind and considerate to others and he sets goals for himself that he works hard to accomplish. I know that he will always require support — and that complete independence may be beyond his reach. But I also know that his place in this world, his intrinsic value, is secure. Those are my hopeful thoughts.
My more worrisome thoughts have to do with whether he will be safe, whether he will have the support he needs once I’m no longer here to either provide them or make sure that he gets them, whether his mental health issues will wax or wane and whether he will continue to be able to show startling grace and acceptance as his awareness of his disabilities continues to grow. But again, I no longer lose sleep over these worries the way I used to, and for that I’m grateful.