Where do we find hope and inspiration? Our daughter Julianna is a 10-year-old cutie-pie with dark hair, bright grey-green eyes, and the softest fair skin. She does not walk or talk, she eats though a tube in her tummy, and breathes through a small hole in her neck. Our reality for the last ten years has been filled with multiple hospitalizations, medications, and surgeries for a condition that looks a lot like cerebral palsy but is, as yet, an undiagnosed metabolic disorder.
When Julianna Aviva Gerber Goldstein was born on April 1, 2007, five years younger than her brother Joseph, she was a “perfect,” baby who would soon show evidence of seizures and profound delays in all areas. These issues have continued and multiplied. Julianna is completely dependent on adults for everything. She has a nurse with her at school and a nurse monitoring her all night.
Managing Julianna’s day to day needs makes me profoundly dependent on others, not a comfortable feeling for an adult. I depend on caregivers, nurses, doctors, therapists, the insurance company, the board of education, even school bus drivers, to provide the services and care that she needs. Helpers are in and out of my house all the time. A friend of mine dubbed this The Julianna Industrial Complex. And with so many moving parts, something inevitably goes wrong. This is chronically stressful.
Now, this sounds like a lot, IT IS, but all of that is not about Julianna. Julianna is very cute and sweet, spunky, cuddly, and beautiful, and finds ways to make her needs known and endear herself to others. She has a fan club. Julianna loves looking at books, listening to music, having me sing to her. She can now make clear eye contact which any of her caregivers will tell you, feels like a very powerful connection. She goes to school everyday in her wheelchair with a fantastic nurse, and receives all kinds of therapies at school and at home from a very dedicated team. We are lucky for all the support and the inspiring helpers.
Ten years after the original diagnoses, I am over the initial trauma and the feeling that the world is upside down and backwards. Don’t get me wrong, things remain upside down and backwards but now I know the reality of the situation – the name of this game is, there is always “something,” and it is not anyone’s fault. I arrived at this place through all kinds of help, including a strong marriage, a terrific son with a great sense of humor, unwavering friends, and an amazing support group of other mothers who have special needs children; therapy, psychiatry and family have also all played an important role. And I will continue to need all of these supports as we face whatever is to come.
One thing that has sustained me, is that Julianna as a person, feels complete and whole to me as she is. Perhaps because she is no way “typical,” I cannot compare her to other children. It’s way beyond apples and oranges. Despite how sad and tragic things feel at times, I have a deeply found connection to my daughter that does not need words, though it is certainly different than the one I expected. There is a grace to balancing the feelings of sadness and gratitude, anger and amazement.
And I continue to work on this. There is, also, surprisingly, a lot of laughter, both at the absurdity of some moments, and of the magic of others. I continue to find hope and inspiration in the coexistence of joy and sadness, in our ability to rectify unexpected mistakes, in the sharing of our stories, in the bridge I have found to Julianna through singing, and in our ability to begin again.
After ten years, I still feel still amazed that both the difficulties and the joys in our lives keep coming. How can they coexist? And yet, as Yehudah Amichai wrote, we “laugh and cry with the same eyes.” I take tremendous hope and inspiration from so many of Julianna’s therapists who take such joy in her. Julianna’s newest caregiver, who literally seemed to fall from the sky at just the moment we needed her, said to her recently “Julianna, I was looking to make a new friend just like you.” Not everything is a struggle.
Having Julianna has helped me appreciate small, joyous moments. When Julianna heard Julie Andrews sing “A spoonful of sugar helps the medicine go down” for the first time and started giggling, we could all feel how special and magical the moment was. Identifying something that makes Julianna happy and being able to share in that laughter does not happen every day. And we wanted to enjoy it thoroughly. Lucky for us, it went on for several minutes.
But of course, there can be fear in being happy. We knock on wood all the time at my house, because when things feel so unpredictable, you pretend you have some control — but good moments do not prevent bad ones, and nor do they cause them, because honestly, everything is simultaneously okay and not okay a lot of the time, at the same time.
For several weeks before and after Joseph’s Bar Mitzvah, we were in the ICU with Julianna with new medical problems. Smack in-between these two hospitalizations, Joseph had a wonderful Bar Mitzvah. I remember how happy and proud we all were. Joseph was confident and calm, we were belting out songs with Cantor Lisa and Rabbi Strassfeld, our families participated a lot, and Joseph told me afterwards how “just right” everything had felt to him.
Perhaps seeking joy is actually a commandment. Rabbi Nachman of Braslov, a disciple of the Baal Shem Tov, taught “It is a great mitzvah, commandment, to be happy always.” Always isn’t possible of course, and he knew this, but that was why he offered specific ways to cultivate joy – because he knew that life would also be full of sadness and suffering. I think this idea of nurturing and developing ways of being joyful has a lot to offer us as we navigate Julianna’s chronic illness and we all face stressful situations and anxious times.
I make mistakes. Often. Sometimes those mistakes aren’t even the ones I saw coming. Though it may not sound like it, I try to be very strong and together at home, because both of my children need to know I am taking care of them. But in trying to show our son Joseph that “everything is okay here,” he has felt he cannot truly complain about how hard this is on him. We didn’t quite see it, because he has a lot of support, and no offense to Joseph, he didn’t seem like the “perfect” kid they say that siblings of special needs children can feel pressure to be. But the strain on him came out in other ways. Once we recognized more of Joseph’s experience, we were able to make some changes for him at home and at school so that he had more freedom for his feelings, both good and bad.
Yesterday the Rabbi mentioned the importance of stories, in listening and sharing stories with each other. Perhaps in sharing my story it may encourage others to open up and share theirs as well, because everyone has a “story.” Very often my mentioning a little about Julianna to a new person will soon lead to their telling me about a struggle or painful time in their own life, because the most challenging parts of my experience are in no ways unique. The overwhelmingness, the helplessness, the anger. And though of course speaking about these feelings is painful, it can also help us feel more understood and connected to each other, whether our stories are exactly the same or not. It is beneficial to share my story and hear someone else’s and realize it is not about assessing who has it harder, but that perspective only happens for each of us when all of us share our stories with each other.
D. Singing as a bridge
I have always loved singing, and singing has been a constant in my relationship with Julianna. My biggest role as her mother, in addition to heading up the Julianna Industrial Complex, is being chief cuddler and singer of songs. I sing show tunes, camp songs, and make up countless songs using her name. I realized recently that perhaps I sing to her because I don’t always know what to talk to her about. I can’t be sure of what she understands. But singing has always been my bridge to her. And sometimes when I’m holding Julianna, and just humming, it feels like a nigun. A way of reaching out to her and finding her in a melody that doesn’t need words. “There are gates in heaven that cannot be opened except by melody and song,” said Rabbi Shneur Zalman of Liady, the founder of Chabad. And singing feels like opening the gates between Julianna and me. Which brings me to my last thoughts about opening gates and song….
E. Begin Again
Recently I stood in our kitchen, shaking and in tears as I realized Julianna’s school bus had left without her. It’s a long story, but over the course of the day I made the situation with her bus driver better and worse several times over. I felt sick from yelling out of helplessness and frustration. I ended the day knowing I had to apologize and start over. And it wasn’t that I was wrong exactly, it was that I couldn’t stay in that place. I had to begin again. I had to repair my relationship with the bus driver. This of course is one small example, but I have learned the hard way over many years, the necessity of having to begin again, with myself, my family, my relationship to the daily struggles. But I have also realized what a privilege, opportunity, and relief it is that I CAN, begin again. In the New Year, may our joy, our stories and our singing help us to find hope and inspiration, and to begin again with ourselves and each other.