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Thursday, May 29, 2014

Hand in Hand wwith Hashem, an interview with Devorah Leah Kievman

Just thinking about my friend Devorah Leah Kievman brings a smile to my lips. She is a person brimming with simchah — not that wild, unbridled euphoria that is often a camouflage for a broken heart, but a feeling of pervasive joy that comes from a sense of purpose.

The first time I met Devorah Leah, she welcomed me graciously into her living room and, without batting an eyelash, introduced me to her thirteen year old son, Shlomo Zalman, who at that exact moment was throwing all the toys off the shelves. "My son is extremely creative," she smiled, as she firmly put a stop to his destructive activity.

Her second son was sitting in a wheelchair next to the sofa. Lightly placing her hand on his shoulder, she continued, "This is my very special Chayim Yitzchok. He absolutely loves company. That's why, in honor of our guest, we're going to bring out some delicious nosh!" Chayim Yitzchok broke into a dazzling smile. "That's right, your favorite: chocolate chip cookies."

From the kitchen, I heard a voice call out, "Finally! I wondered how long we'd have to wait before we could eat those cookies."

"That's my Eli," Devorah Leah chuckled. "He's ten."

A few minutes later, Eli came out of the kitchen, carrying a tray laden with goodies. As he and his mother exchanged a few jokes, I looked around at the simple furnishings and at the two rambunctious children.

Devorah Leah, a single mother raising three very challenging children alone, , exudes a sense of calmness and self-confidence. Though I am old enough to be her mother, I immediately knew that Devorah Leah is one woman I would like to befriend.

I'm a single mother with three absolutely delicious children: Shlomo Zalman, age 14; Chayim Yitzchok, who will be 13 in Iyar; and my youngest, ten-year-old Eli. Each of my boys is special and unique. My oldest, Shlomo Zalman, has Pervasive Developmental Disorder (PDD) and attends Shtilim, a school for children with autism. He's a delightful young man, who has difficulty communicating, and expressing his emotions or needs. For example, he and his younger brother, Chayim Yitzchok, are best friends, but instead of telling Chayim Yitzchok that he wants to play with him, he might sit on him, or even do something dangerous; and rather than tell me that he's hungry, he might empty the kitchen cabinets. He might dump all the clothes from the closet onto the floor or throw our things into the tiny space between the top of the closet and the ceiling!

My second son, Chayim Yitzchok, arrived six weeks early. In addition to not getting sufficient oxygen at birth, he had meningitis. Although we knew he would have problems, we had no idea how they would affect him. For the first six months of his life, we treated him as a healthy, developmentally ordinary child. I really believe that those six months were a present from Hashem to give me an opportunity to totally bond with my baby, without having to worry about potential developmental issues. When he was six months old, and still hadn’t learned to turn over, he was diagnosed with cerebral palsy (CP).

My youngest son, Eli, is deliciously normal, extremely precocious and challenging in his own ten-year-old way. After having two children with serious developmental issues, I cannot describe the excitement I felt at Eli's every milestone. I was delirious with joy when he took his first word, his first step, and appreciated and rejoiced in these seemingly simple moments.

There is a lot of work involved in taking care of two disabled children, so every once in a while I send them to the Refuah V’Yeshuah Nofshon (in English it's called a hostel, but that word is inadequate to describe their home away from home) so that Eli and I can enjoy an "off Shabbos." Once, after having gone through a very difficult medical crisis with Chayim Yitzchok, I felt that Eli needed some special time alone with me. I surprised him with a trip to England to spend Shabbos with his Bubby and Zeidy. You should have seen the look on that kid's face when, after buying him a new sweater, I asked, "How'd you like to wear that in England?" and then took him directly from the store to the airport! We had a blast, and of course all my relatives spoiled the poor kid rotten!

 Family Support

When I look at my three children, I am grateful that Hashem charged me with taking care of such wonderful neshamos. People often ask me how I manage, where I find the inner strength to do what I do. I owe much of who I am to my parents. They inculcated me with a positive feeling of self. I always felt good about myself, and I'm able to pass that attitude on to my children.

As a child, due to a medical condition, I suffered from repeated infections and spent a lot of time in the waiting room at the doctor’s office. My parents were always matter-of-fact about it. They never let me feel sorry for myself. Perhaps that is why I am so matter-of-fact about my own children's challenges.I don't view my kids' developmental difficulties as tragedies. Yes, they have to be dealt with and yes, it can make life challenging at times, but then again, isn't that what life is all about — facing challenges, overcoming them, and then growing from them? And besides, with the love I feel for my children, the difficulties are just that — small challenges that make my life’s work a bit harder. The love I get in return from my children makes it all worthwhile.

When Hashem gives a nisayon, He spreads a security net to help us get through it. In my case, that security net is my siblings. I have their unwavering support. From the four corners of the globe, they always make themselves available, no matter the time of day or night. At times, when I felt so overwhelmed I had no idea how I could possibly continue, they stretched themselves to the nth degree to give me the support I so desperately needed. I have no doubt that Hashem will repay them for all their love and support.

Aliyah to Eretz Yisrael

My two older children were born in England. We moved to Eretz Yisrael when Chayim Yitzchok was almost two so that he and Shlomo Zalman could receive more intensive intervention. In England, Chayim Yitzchok received just an hour a week of physiotherapy; we were on the waiting list for occupational therapy; and let's not even begin discussing speech therapy! Shlomo Zalman was in an integrated kindergarten for only three-and-a-half hours a day, and that was it; nothing more!

In Eretz Yisrael, children with special needs attend school from a very early age, and are there from eight o'clock in the morning until at least four o'clock in the afternoon. During those hours they are given a multitude of therapies, so that throughout the day they are getting the help they need to develop to their full potential.

Three years after moving to Eretz Yisrael, we discovered that Chayim Yitzchok had epilepsy. The truth is, he had had two seizures in England, but they were both very minor and occurred after an airplane journey, so the doctors didn't take them seriously. But after we moved to Eretz Yisrael, he began to have seizures regularly. We were in and out of the hospital, often spending time in the ICU.

Trust in Hashem

The situation was unsettling; I never knew where I'd be the next night. During that time, I really understood that I was not in control of my life, and as strange as this might sound, it was during this very unstable time in my life that I really learned to trust Hashem. We all learn about emunah and bitachon in school, but I always had a cognitive understanding of it, not a deep, all-encompassing knowledge. Now it was the anchor I held onto as I integrated those lessons into my real life.

A couple of years ago, Chayim Yitzchok had a very severe seizure right before Rosh Hashanah. The doctors spent hours trying to stop it. It got to the point at which they told me there was nothing more they could do to help him. That morning, as I davened Az Yashir, the relevancy of the words jumped out at me. If Hashem could take the Jews out of Mitzrayim and split the Yam Suf, it was obvious to me that He could, and He would, take care of my child, in whatever way is best (we never really know what is the best for us). The knowledge that Hashem is in charge became very real, and extremely comforting.

One night, after I tucked the boys into bed, they started jumping all over the place and acting extremely wild. I was exhausted and almost in tears. I felt so alone and sorry for myself; it was just me and the kids, and I had no one to turn to for help. I began to daven. The tears were flowing down my face as I asked Hashem to help me. Within less than three minutes, the boys were all sound asleep — snoring, actually! What a beautiful sound. Now, when things get tough, I think back to that night. It was so obvious that Hashem was there, helping me. I speak to Hashem all the time.

I once heard that the longest distance in the world is the distance between our intellect — and our emotions. At that time of real challenge, when I was too drained to cope with my children’s shenanigans, I was able to internalize what I had learned, to make it an emotional reality. I have no doubt that the difficult medical challenges that Chayim Yitzchok experiences is just one tiny part of a much larger picture. Someday, perhaps, I'll completely understand how it all fits together, but until then, I know there's a reason for everything, and that Hashem is operating with incredible kindness.

Bar Mitzvah Celebrations

Last year, we made a beautiful bar mitzvah celebration for my oldest son, Shlomo Zalman. Despite his PDD, he puts on Tefillin every day, davens, and really feels love toward Hashem. He is very excited that Chayim Yitzchok will soon have a bar mitzvah, and constantly asks me if he will also have the zechus of putting on Tefillin. The answer is yes, of course! Although Chayim Yitzchok has the mental capacity of a two-and-a-half-year-old, he can say Shema, so although I won't be buying Tefillin for him, he will put them on when he turns thirteen, iy”H, and hopefully on other occasions as well.

I've been giving a lot of thought to how our family should celebrate Chayim Yitzchok’s special day. A regular bar mitzvah reception would mean absolutely nothing to him. He loves music, so I considered making a kumsitz. For my older son, Shlomo Zalman, in addition to the standard bar mitzvah reception, my extended family held a beautiful kumsitz on a rooftop overlooking the Kosel. But although Chayim Yitzchok would enjoy the singing, he would never understand that it was all about him.

This past Tishrei, Chayim Yitzchok was hospitalized for two- and-a-half weeks. The situation did not look good. His health is continually deteriorating, and he often aspirates food (the doctors are considering putting in a gastric tube to avoid this problem). It's obvious to me that this precious child of mine is in real need of a zechus.

My sisters and I were brainstorming about what we could do to celebrate Chayim Yitzchok’s bar mitzvah in a way that would be meaningful for him, while at the same time, be a zechus for his refuah. "He gets excited every time he sees a sefer Torah,” I told my sister. “And he loves to sing Toras Hashem Temimah at the top of his lungs!"

Even as the words came out of my mouth, it occurred simultaneously to both of us that we should donate a sefer Torah in honor of his bar mitzvah. He would love to participate in the hachnasas sefer Torah celebrations.  

As my sisters and I continued to speak, the words seem to topple one over the other.

"He would be so excited."

"I can almost see him clapping to the music!"

"What a zechus — for him and for our entire family!"

My siblings and I started to get the ball rolling. We decided to donate the Sefer Torah to the Refuah VeYeshuah Respite Care Center, my sons' home away from home. I can almost picture Shlomo Zalman and Chayim Yitzchok's excitement when they will, iy"H see Chayim Yitzchok's sefer Torah being taken out of the aron kodesh on Shabbos for kriyas Hatorah! We recently hired a sofer, and are watching the dream turn into a reality. 

Shlomo Zalman is very excited. He constantly talks about how he's going to dance through the streets of Yerushalayim at our future hachnassas sefer Torah. Eli understands the importance of what we're doing. He is looking forward to so many people joining together with us to celebrate Chayim Yitzchok's Bar Mitzvah, and of having the zechus of a sefer Torah leaving from our house. As for Chayim Yitzchok, he gets excited whenever we talk about the haknassas sefer Torah, he sings hachnassas sefer Torah songs all the time, and realizes that it has something to do with him. But he doesn't understand what it really means, or that that this will be a huge zechus for him and, b'ezras Hashem, for his future refuah. As for me, whenever I think about my father and brothers dancing through the streets of Yerushalayim carrying my son's sefer Torah, I become teary-eyed.

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