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,
But I also want to share with both of you what it has taught me because the lessons are significant. This disease has made me not only a better parent but also a better person. It has taught me to let more stuff roll off of my back and avoid getting upset and to have patience. While I may still get frustrated when it takes you twice the amount of time to do your writing homework, I do a much better job each day of preventing it from showing.
You have taught me to stop apologizing for what this disease does by never losing your cool when either of you miss the ball in soccer or softball. So you can’t run fast or catch a ball well when you play on the Rec Center Softball team and you are better goalies than forwards on the Rec Soccer team. While other parents may care, I don’t. It isn’t professional baseball or soccer. All I care about is that you’re having fun with your friends.
As you both know, I have worked with disease advocacy groups for years to help raise awareness. I never truly understood the passion and commitment behind these advocacy groups until I had to advocate for you. Educating about a disease and fighting for research, accommodations and funding is much harder than promoting a product because it is personal and emotional. Just as we have always been your biggest advocates and fans, we recently got both of you classified under section 504 of the Rehabilitation Act and the Americans with Disabilities Act.
Trust me, making the decision to petition for the 504s was hard for us to do, as we were reluctant to highlight the differences between either of you and your peers any more than we had to. Nonetheless, it was time to do so. As your teachers this past year, Mrs. Holmes, Miss Scillia and Mr. Dente (who adore both of you as much as we do) have said, no one would ever know that you have this disease unless they saw you run, try to catch a ball, handwrite or use scissors. However, even they were in full agreement with our decision.
The 504 classification specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary schooling. It also spells out the modifications and accommodations that will be needed for these individuals to have an opportunity perform at the same level as their peers and can never be rescinded like an individualized education plan (IEP). It will accompany you for the rest of your lives throughout your schooling and to the workplace.
For you, Darcy, it meant that you could start using a keyboard in class and for testing immediately, which has made a huge difference in your work.
We promise to keep being honest with you. There are no secrets about what the doctors are recommending and what the future may hold, and there never will be. You are as much members of the medical team that oversees your treatment decisions as we are. You have earned this right with your maturity and attitudes. I have never once heard either of you say “I hate myself because I can’t do this or I can’t do that.” Your attitudes have always been “Never say I can’t. Always say I’ll try.”
You are both amazing girls. You have overcome so much in your 10 and 6 years. You are our inspiration for being better people and fighting to accomplish our own goals.