When you're not writing, how do you spend your time?
We moved to Southern California about four years ago and there isn't a minute I take it for granted after years raising my kids in the basement of our Midwest home. Either we were avoiding snow or a tornado. In So Cal, I am happy doing anything outdoors from riding my bike along the coast to gardening.
What inspires you to get out of bed each day?
My family, my dogs, my writing and my faith. Honestly, I can't wait to see what Spirit has in store for me each day.
You adopted your daughter Emily at birth, not knowing that her birth mother had mislead the adoption team and had taken drugs and alcohol while pregnant, causing brain damage to Emily in utero. How did you come to learn the truth, and how did you fee
From the moment I held her the whole mommy experience was different from what it was with my firstborn (my son). At first, I attributed it to her being a girl. I’m afraid I fell into that percentage of new parents whose own mother had once shaken a finger at her wishing upon her “a daughter just like you” someday, so for many months I just internalized that this was a kind of “revenge” for my own spirited nature as a child. Emily didn’t cuddle and she was impossible to soothe. She cried constantly and it only seemed to be exacerbated by whatever I tried to do to help her. Additionally, over those first few months there were a generous amount of medical issues and as they cropped up, so did the number of visits to medical professionals. In fact, I took her to 38 of them before anyone had anything to say other than I was either imagining things or that I was the worst choice of adoptive mother for her. It took receiving a letter from our birthmother’s brother (who helped orchestrate the adoption) when Emily was about 32 months old to tip us off to the fact that the birth story we’d been told was complete fiction. The 39th doctor was a specialist in assessing children for exposure in utero and he diagnosed Emily with Fetal Alcohol Spectrum disorder in under five minutes. Why 38 other medical professionals didn’t recognize the physical markings of FASD still stuns me.
What was Emily's diagnosis?
At just under three years of age, Emily was diagnosed with full FASD. It is a spectrum disorder so kids can fall anywhere along the spectrum of having an IQ lower than 85 to just having it affect their memory and look like ADHD. Emily fell on the mid-to low end of the spectrum and even with her high IQ she had so many other comorbidities (other mental illnesses) that her issues became increasingly difficult to manage. At age 5 she was diagnosed with reactive attachment disorder (RAD) and at six, bipolar disorder. All wrapped up in it was depression, ADHD, you name it. At one point they had me giving her so many medications for all the diagnosis, I needed an Excel sheet to keep track of them all. And of course, a wounded brain missing white matter doesn’t process the medications the way a child without brain damage, so it is sufficed to say, the medications never really worked anyhow. As the 39th doctor told us on the day he gave us the diagnosis, FASD is not curable. It is a traumatic brain injury that occurs in the womb when alcohol is present as the fetus is developing and there’s no way to undo it.
I know this is a hard question to answer given that you haven't had contact with Emily for a long time, and you had to give her up for her own sake as well as for the sake of your other children, but what is your fondest memory about Emily? What made
When Emily laughed, my heart sang. She had an extraordinary smile and a gorgeous laugh. I hear it in my memory now and my eyes swell with tears in the missing. I find myself pouring over old photo albums wondering how things could have been so completely out of control when we have such beautiful photos of our time together. I idealized perfection in those photos. But it seems as soon as they were shot, there’d be something that vaporized the moment. Even so, the memories of those moments have a sweetness to them.
You did many therapies with Emily, including OT for her sensory processing disorder, and fought hard to get her more services and the medical and psychological help she needed. What did you learn about advocating for a special needs child?
It’s very difficult. Kids like Emily walk around with dollar signs over their heads. They are a liability to whatever school system they fall into and the insurance companies get mighty finicky over what they’ll pay outside of the state services that are or aren’t provided. Often, the school districts are so tight-fisted, that the child like Emily has to actually “fail upwards” and throw a chair or worse, attack a student or a teacher to even be noticed, no less identified as high risk needing support services.
What were the keys to coming to terms with the harsh truth that when it came to Emily's issues, including her inability to bond with you and your family, Mama couldn't kiss it better?
It never crossed my mind to compare my relationship with Emily to the relationships I shared with the other children before she left and began to live with another family. It just felt too dangerous to do that, and in some way, immoral. I mean, I'm me. I'm Mama. Consistently Mama. I didn’t want to feel that I treated them or loved them any differently. It never occurred to me that I might discover that Emily’s inability to bond with me as my other children had was not a matter of my own foibles. I didn't even flirt with the concept of comparing the two experiences or outcomes until a professional suggested it was the means to understanding my own grief.
I had what I call an unrequited love for my daughter, but on the couch, I was forced to look honestly at what happened. The fact was, she did not bond to me in the hours and days after she was handed to me like the other children. That’s RAD. She never found any comfort in my touch, my voice, or any of my attempts to soothe her. I loved all my children the same, but the other two responded to what I gave them, my mother love, and engaged in a trusting relationship with me. She did not. She never reciprocated. So, I kept giving her love and living haunted by the ghosts of my own childhood telling me it was all I deserved. And in that commitment to our one-sided love affair, I kept her alive for 7 tumultuous years and hadn't ever really been honest with myself that I never actually had a relationship with her.
I continue to work intensely on letting go and processing the loss. I sacrificed much, but I have no regrets. The lessons I learned are unprecedented and the depth of loss and grief I feel at her absence merely puts those lessons into perspective. And it consoles me to remind myself that now she is in a home where she feels loved and expresses love, and is functioning well.
What advice do you have for special needs parents who are struggling to provide the help their kids need and feeling that they're just not doing a good enough job?
I guess the most important thing to recognize is that we are all imperfect. I mean that in the kindest way. If we or our children were perfect, we wouldn’t be human. It wasn’t until I realized that Emily’s journey was her own and I was there to walk alongside her and provide whatever I could to support her that I was able to accept my limitations as her parent. As for our children, we need to advocate for them in the highest sense. We need to listen to them and understand what is behind their behavior and then we need to do our very best at communicating that to the schools, therapists, medical doctors and anyone who is in a position to help them be successful, at all costs!
When I was going through this with Emily, I felt like an island. I had the child who was blowing apart everywhere and as the playdates dwindled and the eyes of others found their way to the ground whenever we approached, I felt completely isolated. To combat my feelings of desperation and self recrimination I hired so many therapists that there wasn’t a day of the week we weren’t sitting in someone’s waiting room waiting to be analyzed. It was too much and it’s only in looking back now that I understand why I did it. I wanted a fix. I wanted a cure. I needed to be guided towards a magic pill that could help my daughter and make me not a failure. It’s hard not to want to fix things to reflect what you thought your life and idealized family would look like. But that’s not real life. In real life there are stressors, emotions, challenges, and lessons all of which are part of the journey as a spiritual being expressing as a human in a body. It’s simple and it may feel like a spiritual bypass when I say this, but love yourself. Love your kids. Love your life, no matter what it looks like. Nothing is an accident. Life is always trying to show us something new and grow who we are – as people AND spiritual beings.
There is no doubt in my mind that our mental health care system has to be restructured. Our politicians need to realize that there are virtually no support resources for families raising children with mental illness and other mental disabilities, invisible or otherwise. My vision for the book is that it will wake politicians up. Our story is not rare or isolated, but sadly, it took going public for me to find that out. I am filled with gratitude for my journey with my daughter as I believe it will help me help others who are walking the same path.
Know this: You ARE good enough. What isn’t good enough are the support services for families struggling and that must and will change.
Smashwords Interviews are created by the profiled author, publisher or reader.