In Ukraine, Giving My Son With Disabilities a Full Jewish Life

As a single mother raising a son with disabilities, Marina M. has never had it easy.  But when she turned to the JDC-supported Hesed social welfare center in Odesa, Ukraine, she and her son Bogdan, now 17, found the support they so desperately needed. This Jewish Disabilities Awareness, Acceptance, and Inclusion Month (JDAIM), Marina describes the challenges of raising Bogdan in the middle of the Ukraine crisis — and how JDC’s support has quite literally saved their lives.

My son is my whole family, and every day we fight for our happiness, our joy, and our lives. Each day, we try to live life as if it were a celebration. 

This isn’t always easy. Sometimes people turn away and pretend we’re not there. Sometimes they even act surprised, like, “Why do you have a kid like that?” 

It’s frustrating and it hurts.

The problems started when I was pregnant. Bogdan was born prematurely, and the prognosis was terrible: The doctor said he’d only live two weeks because of a congenital heart defect.

We rushed to Kyiv for surgery. They operated on him and put him on a ventilator for three months. Then, they had to do another operation on his lungs and diaphragm. Only then did he start breathing on his own. Everyone was relieved — finally, we could go back home to Odesa. 

But the battle wasn’t over. At nine months, he had his first epileptic seizures — a terrible experience for us both — and had to stay in the hospital for months on end. 

From the ages of 5 and 7, everything was more or less stable. After that, his scoliosis progressed and it led to hip dislocation. Not only that, his right leg stopped growing, so now it’s four centimeters shorter than his left. 

These days, we keep fighting. I do everything I can to ensure Bogdan feels healthy and happy: getting him massages, going for exercise and playdates with friends, and, above all, visiting our beloved JDC-supported Hesed social welfare center in Odesa. 

They provide us with all the basic supplies Bogdan urgently needs: food, medicine, winter survival aid, rehabilitation equipment, and more. We also get help buying groceries — I always try to get the best for my Bogdan, to make sure that, in his condition, his nutrition is top of mind, and everything is as easy as possible for him.

We also have a wonderful JDC social worker, Nikolay, who comes over three times a week. Nikolay keeps Bogdan company, playing games with him and checking up on his health. 

Right now, Bogdan loves playing his keyboard with Nikolay. They sing and pretend they’re on “Ukraine’s Got Talent.” Bogdan also likes building towers, he loves summer, he loves outings, and he enjoys spending time with his friends at Hesed and the JDC-supported Migdal Jewish Community Center (JCC). 

In so many ways, he’s just a normal kid. JDC, Hesed, and Migdal make him feel that way. We don’t feel like we’re different, but that we’re just like everyone else. 

At home, it’s just me and Bogdan. We have no other relatives. But outside, we aren’t alone: We have our big, wonderful Jewish family — it’s Hesed and everyone who works there. I get all my energy from them. My motto is “keep smiling,” and the only reason I’m able to smile now is because of the amazing people there. 

Unfortunately, tragedy has come to my country, and now we need this support more than ever before.  Of course, there are the day-to-day difficulties of being a person with disabilities — getting around, going to treatments. In even the best of times, it’s hard to go places because the sidewalks aren’t ideal for a wheelchair.

But the stakes are so much higher now. 

I fear for my child’s life and mine. I’ve tried to make everything more comfortable at home, to protect him as much as possible so he won’t hear explosions, bombings, or sirens. But what if the sirens go off while we’re outside? What if we can’t find shelter?

What will happen if, God forbid, I’m no longer with my son? That’s my greatest fear. 

My son understands that we’re living through a nightmare, but he doesn’t realize the full extent of the problem. And for me, it’s important that he’s not nervous and that he continues to live, smile, and rejoice in each day.

In so many ways, he’s just a normal kid. JDC, Hesed, and Migdal make him feel that way.

Through JDC programs, I know that my Bogdan will be sustained emotionally and physically. For example, AJT FreeDOM, connects teens with special needs with members of Active Jewish Teens (AJT), the JDC youth program in the former Soviet Union (FSU) in partnership with BBYO. Bogdan has benefited so much from in-person and online meetings with these young Jewish leaders. During the pandemic, one teen even partnered with a local JCC professional to invent unique fairytales for Bogdan — it was very special indeed!

I could say I dedicated my life to my son, but I’d rather say that every mother has to do it this way. Because that’s what “mother” means. She should care about how her kid feels, what they say, what they do, and to make them happy, make them understand that they are loved — the one and only in her life.

I wouldn’t be the mother I want to be without the support of those around me. The Jewish community has welcomed me with open arms and a pure soul and is always ready to help. 

That’s why I say JDC is everything to me. It’s my family. It’s my home. And from the very first days of this crisis, it became our big Jewish family — a huge team of people who help not only in word but also in deed. 

Nearly two years into this horrific crisis, my single hope is this: that peace should come, our quality of life maximized, and people’s health improved. I wish there were more trustworthy, loyal friends and wonderful people like the ones in Hesed and Migdal. 

To all of them: I love you, I appreciate you, and we couldn’t exist without you. 

Marina M. is a JDC client in Odesa, Ukraine. 

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