CJ’s favorite thing to say to us when he is upset or things aren’t going his way is, “it doesn’t matter.” It’s his not so subtle way of ending the conversation, because clearly he doesn’t want to talk about whatever is going on anymore. Being the amazing mother that I am, and always wanting to have the last word, I constantly reply with, “it does matter.”

Last Wednesday we had our three month follow up at the neurologist for Ella and CJ wanted to come. I had no problem with him riding down to Hackensack with us but I explained to him that it was a long ride. I also told him that Ella needed some imaging done before she saw the doctor and due to COVID restrictions they were limiting the number of people who were allowed in the appointment. He was upset he couldn’t meet the doctor and told me that he had questions that he wanted to ask him. I told him he could give me the questions and I would ask for him. His reply, “it doesn’t matter.”

Despite being disappointed, he was great the entire ride, only asking me once to stop so he could use the bathroom (his bladder always knows when we are in the car). When we got there he sat patiently through Ella’s imaging, which ended up being after her appointment, and while he did ask one more time if he could go in with us, he understood when I reminded him why he couldn’t.

Our appointment went well. The doctor was pleased that Ella’s forty-eight hour EEG did not show any seizure activity and that her current course of medication was doing its job. We talked about the need to keep twenty-four hour nursing for the foreseeable future and he assured me he would do anything necessary to make that happen. We also discussed getting some new monitoring equipment and confirmed that we were all set to go with Ella’s sleep apnea study at the end of July.

As we were wrapping up he asked me how I ended up winning my appeal for nursing with the insurance company after our last denial. I told him I called my local senator for support and wrote a letter to UHC myself. He told me I was amazing. I am a mom who can make one call and get a helicopter ride to the hospital for her daughter AND know enough to call state senators. He said every mom should fight as hard as I do. It embarrassed the hell out of me but coming from such a highly regarded doctor in the field of pediatric neurology it felt damn good to hear.

As he does at the end of every visit, he asked if there was anything else we needed. I said, “there is one favor I have, if you don’t mind.” He didn’t even hesitate before he said sure. I explained that CJ was out in the waiting room and wanted to come in. I told him that he came down because he wanted to meet the doctor who stopped Ella’s seizures and was sad that he couldn’t come in to see him. I then asked if there was any way we could swap out a person in the room so he could come in and meet him. He was flattered, and without missing a beat, asked me his name and said he would go out and talk to him in the waiting room. This way we could all be there.

I walked out first and told CJ that someone was coming out to meet him. His jaw dropped when he saw the doctor and immediately got very quiet. They shook hands and from there my heart exploded. While CJ was shy at first he quickly warmed up and started asking such amazing questions. He and the doctor chatted for almost five minutes and when the conversation was over CJ was complimented on his insightful questions. The doctor also told him he was a great big brother and that if he kept thinking as intuitively as he was, he would save him a spot in the practice for when he got older.

We left the appointment and until CJ went to bed that night he was talking non stop about their conversation. He mentioned over and over how the doctor thought his questions were great and how happy is was that he finally got to meet him. Before he went to sleep I kneeled down next to him to say goodnight and told him how proud I was of him. He thanked me for asking the doctor to come out and wondered why I did after he told me it didn’t matter. I said, “I know how much it meant to you, and that mattered to me.” He hugged me so tight and told me he loved me.

Dr. Eric Segal, thank you. Thank you for taking such great care of Ella, for lifting us up, and for recognizing how incredibly hard Ella’s disabilities are for CJ to navigate. What you did for him mattered. More than you even know. It’s something I assure you he will never forget.

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