Brooke’s Story: Love Beyond Loss

Brooke-1

I first met with Brooke when she was with her young daughter at a new rehabilitation center, and having grown up in the area, I was connected with her about referring bikur cholim services. Since then I had watched Brooke’s story unfold from afar, like thousands of other people who were davening for her sweet Batya, praying that she would get well. This week I had the privilege of hearing the details of this family’s story, a story of unconditional love that transcends this world into the next.

I asked Brooke to start her story from the beginning, “I was 27 weeks pregnant and I was feeling a little lightheaded. My doctor wanted me to come to the hospital to check me out. When I got to the hospital that night my blood pressure was extremely high and I was admitted. Even though they gave me medication, my blood pressure kept rising, and my vision eventually became blurry, and by the afternoon my vision became increasingly worse. Then I completely lost my vision and could not see anymore. They told me that I had fluid pushing on my optic nerve, and they took me for an emergency c-section. This was probably the most scared I had ever been at that point in my life. I couldn’t see and I had no idea what would happen to my baby, or if I would even ever wake up from the surgery. I was petrified.”

Thank God, both Brooke and her baby were doing well after surgery. Brooke’s vision slowly came back, and her baby girl, though born at 27 weeks and 5 days, was doing as well as could be expected. She was on a ventilator, at only 2 pounds 6 ounces. After 24 hours, Brooke was finally allowed to see her daughter for the first time. “It was incredible and beautiful and amazing all at the same time. She was too fragile to be held, so I was able to touch her hand. We were thrilled that she was doing ok considering how early she was born.”

That night things began to shift. The doctor came in to speak to Brooke and her husband Aryeh, and informed them, “Your daughter took a turn for the worse. We don’t know if she will make it through the night. We don’t know what to expect. Her brain is hemorrhaging, and we will do an ultrasound of her head and figure out more in the morning. Right now, pray that she makes it through the night.”

As Brooke and Aryeh stayed up all night, waiting for news about their daughter, they sent Brooke’s father the next morning to name the baby at minyan. Aryeh was devastated that he was not able to name his daughter himself, but he would not leave their side. “Her name originally was going to be different. But the one we chose especially resonated with us at the time. We named her Batya Emunah. Emunah, because all we had at that moment was faith in God, and Batya, because that means ‘Daughter of God,’ and that was our way of saying to Hashem, ‘We are putting this in your hands now.’”

Later that day, the doctors confirmed that Batya had a grade IV brain bleed, which is the most severe bleed a person can have. The pressure was building in her brain, and they placed a shunt in her brain to drain the fluid to release the pressure, her first brain surgery.

When a brain shunt is placed, you are highly susceptible to infection, and if the tube gets infected it needs to be replaced right away. 6 weeks later they had to replace it and then finally she was at a weight where they could bring her home. “She was in the NICU for 111 days, and when we brought her home I was in awe, I was scared and I was excited all at the same time. They put this baby in my hands, who had been through so much and needed so much care. I just didn’t know how it would go. That first night she started breathing weirdly, and we got so scared we rushed her right back to the NICU. They kept her overnight and in the morning reassured us that she was ok. We had to get used to our new normal.”

Brooke described what it was like when the community that had been so diligently davening for this little girl finally had the opportunity to meet her. “We came home erev Yom Kippur, and I will never forget what it was like to walk into shul with her that night. People were just staring and crying. Here was this tiny baby, who everyone had been davening for 111 days, and here she was in real life. A real person. My davening that day was unreal, because I felt like Hashem had finally answered my tefilos.”

A few weeks later Batya developed a fever. They rushed her to the hospital after she turned blue from not being able to breathe. The doctor told them that she needed a new shunt. So Batya endured another brain surgery. “We went through that process 18 times. She was never home for more than 3 months at a time, except for once when she was home for 8 months. Every time she went to the hospital she would have to be in the ICU. We had our son Tzvi, at home, and a year after Batya was born I gave birth to our daughter Lea. There was so much going on, but through it all she was the happiest child. Even though she struggled more than anyone I’ve ever met, she radiated pure happiness. Her joy and her big smile were magical, and was so empowering to me. For her, she was happy because she was alive and surrounded by family that loved her.”

During one of her lengthy stays, the hospital became like a second home. The doctors were wonderful and the whole ICU staff knew their family. When Brooke  would walk in with Batya, the hospital staff would all say, ‘Batya’s back!’ They took an interest in their family, asking about the other children, about religion, about Brooke covering her hair, shabbos and kashrut. “I spent four months living in that ICU with them, and my husband spent 4 months living at home with our other kids.”

Over that time period, the family received so much care and chesed from all over. “People that I hadn’t spoken to in years opened their homes, no matter where we were we always had a hot meal that was prepared for us. People helped us do carpool, would sit with Batya so I could go home and take a shower, playdates for our kids, everything. It was amazing how people responded. I would post something on Facebook that I needed, and then minutes later, I would be flooded with offers of help. It was outrageous how generous the Jewish community was to us during that time in our lives.

Shortly after Batya turned 2 years old, Brooke and Aryeh decided to take their whole family on short trip to 6 Flags Great Adventure. The park staff made it easier for them to enjoy due to Batya’s special needs, and they let them into the safari right away, without having to wait in the 2.5 hour line. Batya was thrilled to be there and enjoyed all the sights, and together the family had a wonderful day.

A few days later, they realized that something was really bothering Batya. She wouldn’t stop crying and her parents could tell that she was really uncomfortable. They took her to the hospital and the doctors informed them that Batya had a type of flu. She was put on a ventilator again.

“One day while I was with her in the hospital, my husband was playing with our children by the pool. During that time, Batya’s heart rate started dropping, and the ventilator was no longer helping. The doctors performed CPR on her, and I called Aryeh and told him, “Come to the hospital, Batya’s dying.” He didn’t get there in time to say goodbye to her, but I was there. All I could do the entire time while this was happening was scream ‘Shema Yisrael’ at the top of my lungs. I didn’t know what I should do with myself. I was saying every piece of tehillim I could think of and finally Aryeh got to the hospital. They explained to us what had happened, and that there was nothing we could have done.

They told us they would clean her up, and give us time to say goodbye to her. We called our family, close friends, community leaders, and other people who had been there for us. I wanted the people who had given so much to Batya to be able to say goodbye, too.”

The funeral was a blur for Brooke. “I remember walking out of the car at the funeral, and there were over 200 people present. I just walked around hugging everyone I saw, crying my eyes out. I don’t remember who spoke, besides for Aryeh, the whole situation is still so fuzzy for me. My husband was holding me up because I couldn’t stand, I was falling over, I couldn’t look people in the face. When her casket came out, I couldn’t believe it, because it was the tiniest thing that I’ve ever seen in my entire life. We went home and we had our seudah, just me and Aryeh. We sat on the floor of our bedroom in shock.”

They decided to wait to tell their 3 year old son, Tzvi, about Batya’s passing until after the funeral, so that he could go to camp the next day unaffected. The night they came home from the hospital, they had to pretend that nothing had happened. Tzvi could already sense that something was wrong. “Having to tell Tzvi that Batya was gone, was the hardest part for me. Having to tell him that his sister wasn’t alive anymore, was unbearable. Somehow, he understood what it meant. We told him that Batya passed away because she had no breath left, and that he would not be able to see her again until Mashiach came.”

Batya passed away on a Tuesday. All week people were coming to the shiva and telling the family that it was such an adjustment for them to stop davening for Batya, because her name was so ingrained in their tefilos, for the last 2 years. “Come Friday night my husband was about to go to shul, and I was about to light candles. I completely lost it. I realized I was lighting candles for someone who wasn’t there anymore. It was the most heartbreaking, gut wrenching feeling. My husband and I stood there for about a half and hour, crying our eyes out.”

Brooke and Aryeh were surrounded by family and friends during the shiva, and it was both very distracting and therapeutic for them. “We got to speak about her, and kept us away from reality. In general our emotions were all over the place. During shiva, something silly happened, and Aryeh and I laughed for literally 10 minutes. We could not stop laughing. A dear friend that was there said to us, ‘I know it’s so hard, your emotions are all over the place.’ Sure enough I immediately started hysterically crying instead of laughing. It was a complete emotional roller coaster.”

In that moment of pain, many people came to bring them comfort. “We saw people from all walks of our lives. Old teachers and friends we haven’t seen in years. All these people came in and told us how Batya was such an inspiration, that her strength was incredible, and what a powerful impact that this tiny person could make on the community. She brought the community together through tefilah, it was a way for people to become united. She was able to bring together thousands of people, in just the two years of her life.”

These foot and hand prints were presented to Brooke and Aryeh by the hospital after Batya had passed. She keeps them by her shabbos candles, as a precious reminder of Batya, and a way to keep a part of her with them as they bring in shabbos in their home. It’s amazing to have that physical reminder of her small hands and feet, like a memory pressed into permanence. When they took it out to show me, it was hard not to get emotional.

There was a lot of specialty equipment that Batya had been fitted for, right before she passed. She had a special wheelchair that was built just for her body along with other devices to make her more mobile. Unfortunately, Brooke needed to return the equipment, “When asked why I was returning these special made things, I had to tell them that she had passed, and that we wouldn’t need them anymore. Every time I had one of those conversations, or saw her things in our house, I would think about what could have been for her.  These devices could have helped her walk, take steps- she could have striven for more.”

Before she had passed, Brooke and Aryeh had moved into a new house to make life more accessible for Batya. She would have had her own space, a bedroom on the first floor, space for her wheelchair. “All of this was happening as she passed away and it felt like our life was in shambles. Here we were, walking into this new house without her, and it felt so dark and sad. We were still moving. The community came in and helped us pack up our stuff. They returned and donated all of the medical things that would bring us pain when we saw it.”

A few months later Brooke gave birth to a daughter, and they named her Shira Zahava. “We named her with Batya in mind. Shira means song, and when Batya was distressed, uncomfortable or anxious, the only thing that would calm her down was singing to her. Zahava means gold, and everything about Batya was golden. Her smile, her curls, her joy, her energy. We wanted Shira to be a song that continued in our house even though Batya was no longer physically present, and we wanted Batya’s golden presence to always be there as a shining reminder.”

Brooke explained to me the struggle that she deals with daily. “Every second of every day we think about Batya. What could have been. Every time someone asks me, ‘how many children do you have?’ What’s the right answer? Is it that I have 5 children? Or that I have 4 children? If I don’t want to engage in a long conversation, I just say 4. But the real answer is: I have 5 children.”

Watching other children Batya’s age grow up is sometimes painful for Brooke. “It breaks my heart that we don’t get to enjoy those things with her. Just a few weeks ago would have been her 6th birthday. She would have gone into kindergarten and then first grade. But she isn’t here. I don’t know if people think about her anymore. Sometimes it feels like we are left in a lone cold world, where it’s just the two of us, me and Aryeh, and no else really thinks about it or talks about it. Besides for my family. My kids talk about her, they ask us questions, we watch videos of her, look at pictures.”

On Tzvi’s first birthday after Batya’s passing he got a bunch of balloons. He took them outside and let one drift off to the sky and said, “This one is for Batya.” He wanted her to be a part of his day. Another day it was raining, and he told his parents, “I guess Batya is having a bath up in shamayim.”  Once he made a project where he had to make wishes, and he wished that “Mashiach would come, so he could see his sister Batya again.” Brooke shared with me, “Our kids are keeping her memory with us, even the ones that are too young or never met her. We are always talking about her and thinking about her at home. Her story will never end because she is still an active person in our lives and our minds. I don’t think the pain of missing her will ever go away.”

The time that I spent with them was inspiring. It was amazing to see how Brooke continues to incorporate Batya into their everyday lives. Even their youngest child, who had never met Batya, was looking at the photo of her and knew exactly who it was. Brooke told me that last week would have been Batya’s 6th birthday, and she made sure that the whole family celebrated it together. She also told me that her children sometimes argue “I knew Batya!” “I love Batya more!” When I was with them, it was so evident that this precious soul was still with them too.

I was also deeply in awe of Brooke and Aryeh’s relationship. Every couple and individual deals with loss in their own way, but these two individuals stand by each other and truly support each other, playing integral roles in keeping the other buoyed through the pain of loss. Aryeh sat by Brooke’s side throughout our whole interview, and behind the scenes, participated in every aspect of this project. The anecdotes they shared about the moments that passed between them were heartbreaking, but it was incredible to hear how they guarded and gave to each other. I loved hearing about their beautiful partnership, Brooke and Aryeh go through life working for the same team.

I asked Brooke what she would want people who are struggling with loss to know. “I want people to know whether they are going through a loss or are in any kind of pain, they are really not alone even if they feel like they are. There are other people out there who have gone through similar situations. I can be here for them. After shiva, it can feel very lonely, because people don’t know what to say, or how to act, or address you, but know that you are not really alone. You will come out stronger. Batya was a precious gift, and we came out stronger than we had ever been in our lives because of what happened to us.”

What Brooke said next, might be the most important lesson of her story. We so often do not know how to engage with people that have lost loved ones. We worry if mentioning their names will bring them pain, so we often choose to say nothing. This is how Brooke feels about the need to talk about her daughter. “Batya is a person, who is active in our hearts in our minds. Don’t be afraid to mention her to us. It won’t make us uncomfortable or cause us pain. When I think of her I think of joy, strength and happiness. Those are the memories that you will bring up for me if you talk to me about her. Sometimes I will think about the things I am missing out on, but I want to feel those things. That means that she did something for me, she left me feeling more whole, and more strong – so don’t be afraid to talk about her. She left a very strong impression on a lot of people.

It’s more painful to pretend that nothing ever happened. I want to talk about her. I need it. It’s my way of coping.”

Shira Lankin Sheps graduated from Hunter College School of Social Work with an MSW in clinical social work. After working in the clinical field, marketing and photojournalism, she decided to start The Layers Project to help break down stigma and promote healing within our Jewish community. She feels strongly about presenting women, who are so often shown as shallow characters or fully removed from Jewish media spaces, as three-dimensional individuals whose lives are full and rich with resilience. Shira is the founder, Publisher and CEO of The Layers Project Magazine.