Now that summer is in full swing, it’s interesting to note how we react to the slight relaxing in schedule and structure.
We don’t have to get the kids ready for the schoolbus in the morning. We can make a picnic and eat in the park or have dinner at home. We can take a hike, on the spur of the moment, or visit family or go for a bike ride. All of these possibilities open up when we don’t have to be somewhere specific at a specific time.
We’ll sometimes feel this kind of freedom during winter vacation and over holidays, but it’s most real in the summer. And when we’re talking about parents of children with special needs, summer is often the only time they have to rest and recharge.
There’s no question that every parent deserves a break from the stressful days and sleepless nights that often accompany children with special needs. But maybe, in the moment, there’s a way to see the situation in a positive light.
Isolation or satisfaction?
As we’ve mentioned in previous columns, there are a lot of things we don’t do when Avi is home. We’ll often forego things like shul attendance, neighborhood events, classes, and even simchas. It’s not a difficult choice: We know where we’re needed.
When Avi’s away, we have to pick and choose which events we want to attend, which we’ll feel guilty for missing, and which we’ll feel guilty for enjoying (and not spending time with the other kids). Is it worthwhile to relax at home for an extra 15 minutes, or to get to shul earlier? These struggles disappear when Avi’s home, because our priorities become abundantly clear.
Our Rabbi – Rav Yaakov M. Twerski – often shares a powerful story that brings this point home.
Several years ago, a New York family welcomed a new baby into the world. Soon after the delivery, they were told the child has Down Syndrome. The parents were trying to come to terms with their new reality when they realized that their two sons, who were studying in Israel, would be calling soon to find out whether their new sibling had arrived. They didn’t quite know how to share the news and how to convey acceptance and confidence yet, so they reached out to a famous magid shiur (Talmud teacher) in Yerushalaim, Rav Michel Zilber, with whom their sons had formed a relationship.
Rav Zilber said, “I’m glad you called me. I will explain the diagnosis to your boys and help them gain perspective. I’m not sure whether you’re aware, but I also have a son with disabilities, who’s now in his 20s.”
The father did not know about Rav Zilber’s firsthand experience, but he was grateful for the assistance. “While we’re on the subject,” Rav Zilber said, “Do you feel like you have a good perspective about your child?”
“To be honest, I haven’t really found a hashkafa (perspective) that will help me adjust,” the father replied.
What does Hashem want?
Rav Zilber continued: “Let me tell you how I see it. Many times, when I’m preparing my shiur, the payphone outside the study hall will ring. It’s my wife, calling to tell me that our son needs help with toileting and bathing. He’s a grown man, and I’m the only one who can pick him up and clean him.
“I close my gemara and walk home, get my son cleaned up and dressed in fresh clothing, and then I head back to the beis medrash. The whole process takes anywhere from a half-hour to an hour. But do you know how I feel as I’m walking back? I feel the same way I do at Neilah (the final prayer) on Yom Kippur.”
“Yom Kippur?” the father interjected. “I can understand if you’d say it feels like Tisha B’Av, but Yom Kippur?”
“Yes,” Rav Zilber answered. “There are many times in life when we are not sure what our mission is or where we should focus our energies. I am a magid shiur. But maybe someone else would do a better job teaching the gemara class? Maybe I should spend my time putting up posters that advertise the other person’s shiur! I enjoy teaching, but how do I know that it’s what Hashem wants me to do?
“There’s one time, though, when I know without a doubt that I’m doing exactly what Hashem wants at that moment. When I’m taking care of my son, I know there’s nobody else who can do it the same way I can. It’s my job and it’s where I need to be.
“On Yom Kippur, at Neilah, nobody is wondering whether they’re supposed to be somewhere else or doing something else. Everyone’s purpose is very clear, at least for those moments. I get to feel that every day.”
Let’s be clear
The lessons of this story aren’t just for parents of children with special needs, and they’re not even just for parents. Freedom is a gift, but when circumstances curtail that freedom, the resulting clarity of purpose is also a gift, and maybe even more valuable.
We hope everyone enjoys a relaxed and refreshing summer, and that we all feel confident and clear in pursuing our individual missions.
By Michelle and Yaakov Steinhart