Eliza Schleifstein lives with her husband Todd and daughters Darcy, 10, and Emily, 6, in Randolph, New Jersey. Still practicing public relations after all these years, but now as a freelancer, she works with advocacy groups and pharmaceutical clients to help raise awareness for disease categories and new treatments, but only when she is not playing chauffeur. Eliza has been writing letters to her children for them to read when they are older since Darcy was born in 2002. For more information about Charcot-Marie-Tooth Disease, please go to www.charcot-marie-tooth.org.
Dear Darcy and Emily,
Daddy and I then and there made a conscious decision that we would be completely honest with you both about how this disease would shape your lives. We know from the genetic markers that you have the most benign form and will never become wheelchair-bound or severely disabled, but you will have challenges as you go through life. There are many activities that your friends can do that you will have to go without doing, such as ice skating, Irish step class and wearing high heels, and we have never hidden that from you.
I truly believe that this disease has made you both stronger children and will make you confident and compassionate adults. Both of you have an extraordinarily large capacity for compassion and love for anyone with any kind of struggle. You are like magnets for your peers having tough times because your personalities can make just about anyone smile and you always have words of encouragement. You never throw fits or get angry when Daddy and I tell you that either you cannot do an activity or that perhaps trying out for a travel sports team might be less than a good idea because the likelihood of your making it is slim to none because of your lack of coordination. You take every discussion about future surgery on your legs with a maturity and lack of fear that is unmatched by any children of your ages that I have ever seen.
Darcy, people still talk about your determination to learn how to walk again after your bilateral heel cord-lengthening surgery. No one will forget when your nursery school teacher Morah Ronnie wheeled you into the room for your graduation with “Pomp and Circumstance” blaring. She expected to push you down the aisle in your wheelchair, but you stopped her at the doorway. You got out of that chair and walked down the aisle in your pink and purple casts, flat footed for the first time in your life, with your friends supporting you on each side. There was not a dry eye in the room. It was then that I knew that no matter how bad this disease got, it would never stop you.
P.S. – See part 3 tomorrow.