Liat Vaknin-Nisan shares a defining moment from her daughter’s hospitalization, when fear, medical uncertainty, and maternal instinct collided—and her voice became essential.
A former lawyer and mediator, Liat never expected her life to lead her from courtrooms to hospital rooms, caregiving, and advocacy. She lives in Israel, with her husband, her daughter Tahel—who has a CAMK2B mutation—and her neurotypical son.
Her journey into the world of disability began long before a formal diagnosis and brought her face to face with moments that required clarity, judgment, and courage. One defining hospital experience reinforced her belief in the importance of using her voice—not because it was new, but because her daughter depended on it.
Guided by her life motto of finding the silver lining in every situation, Michelle approaches even the most challenging realities with clarity, resilience, and hope. She is an active member of the CAMK2 parent board, working to raise awareness, build community, and help other parents trust their own voice.
Transcript
I looked directly into the senior female doctor's eyes and told her, “You have my permission to tube feed her.”
It was October of 2015 and we were deep into our third week stay at the Children's Hospital with our four-year-old daughter, Tahel. It had been two weeks since she collapsed, since the complete shutdown. She wasn't communicating in any way, couldn't reach out for a toy or even lift her head. Our beautiful, cranky, agitated little girl with her iconic bangs lay unmoving in her hospital bed, hollow brown eyes, completely checked out.
By then, hospital stays and emergency visits had become a familiar part of our lives. Four years of countless tests, offering no clear answer other than significant developmental delay. It was the week before that the doctors first mentioned the need to consider tube feeding her, while explaining all the repercussions and eventually saying that, once it was done, she might probably never be able to eat on her own again.
Children with complex medical issues like Tahel, they said, often lose their sense of hunger and, eventually, will require a PEG inserted directly into their stomachs. They even sent a very kind social worker to explain and to prepare us to this inevitable PEG, not as a possibility but as the natural step forward. As if there was not a choice about that, but a certainty.
All the while, I remember this tiny voice inside my head that kept interrupting the conversation, saying, “What is she talking about? That PEG thing is not in Tahel’s future.”
Now, a week had passed, and the doctors kept delaying their decision. Every day, they would say, “We'll start tomorrow.” And every next morning they would come and say, “Let's give it another day,” desperately hoping for improvement.
By that point, Tahel had survived for three weeks on nothing but IV fluids. She was growing thinner and weaker by the day. She was so tiny to begin with, weighing only less than 20 pounds when she was admitted. Now, she was literally wilting before our eyes.
As her mother, I remember feeling this painful mix of helplessness and frustration, knowing something had to change, yet feeling totally powerless to do so myself. I tried to quiet my fears and trust the doctors. After all, they had the expertise, the knowledge, the authority. And I, I was just a mother trying to make sense of it all.
And don't get me wrong, their concerns were real. But even as I kept telling myself that, a sharper, braver voice rose inside me asking, “Was it really possible that the doctors knew more about my own daughter than I did? Could they possibly understand how hard we fought to keep her hunger alive?”
They didn't see the battles behind every tiny bite, how I fought against my mama instinct just to keep that fragile spark of appetite. They didn't know the GI doctor who followed her since birth, week after week fighting with us over every gram. The same doctor that once told me, “You have no idea what a miracle you've pulled off.” And at the time, I truly didn't.
They didn't know what a blessing it was to hear her scream, “Ahhh!” from the top of her lungs when she was hungry, as if she was about to eat a horse. Or how she would light up at the sight of her favorite snack. Yes, she didn't eat much, but what she did agree to eat, she actually loved. They didn't know her before, and that, that was the heart of the problem. They had no true baseline for her. They compared her to either typically developing children or to children with special needs as a category, but not to Tahel. And without knowing that, they couldn't have known what was lost.
And then that same voice turned toward me, trying to remind me of who I was, of the woman who went to law school, the one who knew how to speak clearly, to ask questions, to stand firm. Slowly, I began to understand what those voices were trying to tell me. This was on me. I had to translate her reality, to advocate for her, to be the voice she did not yet have because no one else could.
Standing there in front of the doctor, carrying all that had led us there, the weeks of waiting, the fear, the doubt, the unknowing, and choosing to trust those new voices within me, I finally gave her my permission to place the feeding tube.
Before I could say anything else, she reached out and pulled me into a hug. In a quiet voice, she said, “Thank you. Thank you, that was what we were waiting for. I needed to hear your reassurance.”
And that, that was the moment I finally understood that my voice mattered. And by owning my voice, in a way, I owned my strength as Tahel's mother.
A week later, we finally went home and Tahel was eating on her own. All of this happened in 2015.
Years passed, life moved on, and it was only in 2020 that we finally got a diagnosis. CAMK2, a rare genetic disorder affecting calcium signaling, an essential process for heart and brain activity. The disease can cause, among other things, intellectual disability, motor difficulties, autistic behaviors, and extreme agitation.
For us, the diagnosis didn't change who Tahel was. It gave language to years of questions. And when the diagnosis finally arrived, it met a different me. It met a mother who already knew that her voice mattered and was ready to use it.