I am not writing this to sound ungrateful, humble or mean, but I have to challenge the good people and friends, (family even) who, for more than 10 years now, have commented that our adopted daughter, who lives with, and has suffered from Juvenile Myositis (JM), a rare autoimmune disease, is fortunate to be with us.
Why do I question this? From one perspective I am so glad that we are able to provide the healthcare she has needed. But from another perspective, this is not something she, or we, chose to have happen. Yes, we chose to adopt a child and we feel fortunate to be blessed with this child, (who was healthy for several years), but we didn’t get to “choose” her, she was “next in line.” Does that sound crass? It simply is the way it is. She didn’t choose us either, we were next in line.
After adoption we became her parents, and like any parents, we did whatever we could for our child’s health and well being. If there is any “fortune” involved in her coming to us it is these facts of chance. A) We live in the United States where there is the possibility of decent healthcare vs. Guatemala, where she came from. B) We are highly educated people and are able to negotiate the healthcare and insurance mazes. C) We speak English. D) We have enough income, so that when our child got sick and it necessitated one of us quitting our jobs, we were able to make ends meet. My husband, who had health insurance coverage, kept his. E) This may be the most fortuitous but also random fact of all: when she got sick, none of our doctors locally were able to diagnose her. We went from one to another for over a year. Finally, as the result of several other events, I called my step-father, a neuromuscular disease expert who lives in another state. We travelled to see him and after a few tests, he and his colleagues were able to diagnose her. So began our long journey of treatments, education and understanding of this rare disease.
While JM is life changing, it is not the only important thing in her life. And whether she considers herself “lucky” to have us as parents, is for her to decide. If she is like most kids, she has positive and negative thoughts about us. She has other issues to contend with besides her illness; adoption is one of them, the challenge of growing up Latina in a dominantly Caucasian household is another, and then just plain “growing up.”
I often turn the tables on this idea of good fortune and think how lucky I have been to have her in my life. Loving her has opened my heart in a way it wasn’t open before. I acknowledge my own vulnerability; my greatest love is walking around in the world with my heart attached to her and I can’t control what happens to her. I am pretty sure this is true of parenting any child.
I would never wish this disease on anyone or any family, but in the process of learning about, and dealing with it, I have grown both spiritually and intellectually. I have learned what is really important to me, and health and quality of life are at the top of that list. I don’t sweat the small stuff, what her grades are or the fact that we don’t get to do as many physically challenging, outdoor activities as we used to before we adopted her. But as she’s gotten healthier we have been able to do more.
I have become more flexible. Quitting my last job as the sole proprietor of my own landscape design business to care for her, opened up the opportunity for me to take my writing to another level. For years writing was one of my outlets for creativity. When she got sick I wrote to relieve my stress; writing about my experience allowed me to find some “order” in a life that was suddenly turned upside down with her diagnosis. I have since gone back to graduate school to get an MFA in Creative Writing. Even before that, I had started writing/support groups for parents who also have children living with chronic illnesses. As my child became an adolescent I started writing groups for teens living with chronic illness and will continue this work and offering reflective writing courses/workshops for healthcare professionals as well. I love the fact that I can return, in some sense, to an earlier career, that of mental health counselor with the added benefit of incorporating a creative outlet in my work.
So when people say how lucky my child is, I think, well maybe, but she does have to live with this, as yet, incurable disease, so what’s lucky about that? And I think, how lucky we are to be able to help her. I am not a big believer in fate or God, but I am a believer in making the most of what is given to us in this life, things we choose and things we don’t choose. I hope, like the first part of the Serenity prayer by Reinhold Niebuhr says, I am learning what I can change and what I can’t change.
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference..