Excerpts from the interview
QWhen Chika was diagnosed with the terminal disease, there was no possible treatment for her in Haiti. Has the medical situation improved since then?
Not really. Haiti remains the second poorest country on the planet. Medical options are very bleak for most people. There are no doctors in many parts of the country, no hospitals, and certainly no health insurance. When Chika was diagnosed, the person who did the MRI basically said “there is no one in Haiti who can help her.” I don’t think that would be any different today.
Q You spontaneously decided to bring her to the US for medical treatment. Did you ever think about the challenges ahead?
To be honest, we were so busy getting her a birth certificate, a passport, a visa and an appointment at an American hospital that we didn’t have time to think about challenges or tough times. It kind of hit us when we sat with the doctor and he told us, to our shock, that this wasn’t something they could just take care of and send her home, but rather, it was DIPG, which is basically a four-letter word for death.
Q What kind of a toll did this take on you and your wife individually and as a couple?
Well, I feel silly talking about the toll it took on me or my wife considering the toll it took on Chika. Of course it was exhausting, and worrisome, and you spent every day wondering if you were looking in all the right places. If there was anything you might have missed. But I must mention that I was countered by the joy and wonder of Chika’s personality. That’s what really got us through. Even when we succumbed to arguing, Chika would be the one to pull us out of it.
Q What were the challenges you faced in terms of dealing with people in Haiti?
The Haitian people have been nothing short of wonderful. They recognize the challenge of day to day life in Haiti, and almost everyone I meet is extremely grateful to me or others from around the world who have come to try to help their children. There does not seem to be any resentment to what you say are “outsiders” handling their kids. I think once you get down to Haiti and start making a life or a world there, you’re no longer an outsider.
QYour conversations with Chika — are they imaginary or did you actually have visions of her?
The conversations I use in the book Finding Chika are intentional on several counts. First of all I knew some people would be hesitant to read a book that was about a dying child, because they’d be afraid to get to the end, they wouldn’t want to read the last 50 pages. So right from the first page I say that Chika passed away so the horror is taken out of it. But I also say that she visits me and talks to me and you get to see that in the very first page too. So in some ways she’s still there. This is indeed a manifestation of times when I go and sit, in my office chair downstairs where Chika used to sit by my feet on my right hand side, and I close my eyes and I imagine what she would be saying right now. So those are the conversations that I’ve transmitted along with some funny jokes and remember interactions of her unique way of talking. You could not write a book about Chika that did not engage in conversation. She was so verbal. All of her soul and light and humor and wit were visible through the way she chose to talk.
QWhat did the two years with Chika teach Janine and you?
The list is too long to write here. Suffice to say that she changed our lives in every way. She taught us how to make a family. She enhanced our marriage. She brought joy and wonder into every day of our lives. She taught us about what time really is and how valuable and precious it really is. She taught us about protection. She taught us how tough children really are, in many cases tougher than their parents and adults in their lives — particularly when it comes to dealing with illnesses. We are the better for having had Chika in our lives, and I don’t look at it as that we lost a child. I look at it as we were given one.
QThere is an emptiness when you lose a loved one. Was this book a cathartic experience for you?
You never really fill that emptiness. You just accept that it will be with you for the rest of your life. The book was very cathartic as I got to revisit Chika and review the amazing two years that she was in our care. Because she only lived seven years she didn’t get to meet as many people as she deserved to. By writing the book, I know that many many more people will be aware of her and know who she was. So in that small way she gets to live on beyond her mortal years.
QAfter Chika, has there been any temptation to adopt a child, since life with Chika was a school in parenting for Janine and you?
Since I am at the orphanage every month, and we have 52 kids, I really don’t feel that temptation. Children are a huge part of our lives — all of them Chika’s brothers and sisters — so we get a very fair share of parenting anyhow. When the kids turn 18 and graduate from our school, they are all planning to attend college, many of them in the United States. Two are already there. We see them all the time. So in that way we have the children around us even when they’re older.