. Author manuscript; available in PMC: 2023 May 31.

Published in final edited form as: J Child Neurol. 2022 Feb 23;37(6):451–460. doi: 10.1177/08830738221076285

Table 2.

Grief Association With the Diagnosis by Age at Diagnosis.

Younger children at the time of diagnosis	Older children at the time of diagnosis
Acute onset of grief at time of diagnosis “We had to go out to the car, and I had to Google this as we were driving home. It was on Googling it that I began to have any real inkling of how serious it was. I remember this was—sorry, I’m gonna cry now. It was December, and the appointment had been at the end of the day. It was daylight when we went in and dark when we came out. I just always felt this was some analogy of our life, that we just came out into the darkness. The first night was so bad. You just bring your child home, and all of a sudden, I felt very disconnected from her. I felt like I didn’t know who she was anymore. She was living, but her diagnosis felt like a death sentence to me. She was this living body and nothing else at the time. We just felt such desperation. We felt so low.” (participant 25) “I guess it was—I don’t know. You had hopes during your pregnancy and after she’s born. She’s born healthy, so you assume. You’re told that the seizures might go away, so you hold on to hope it will go away, and if nothin’ more, but then when you find out that there’s a diagnosis, and the blanket expectation of what CDKL5 was, all of our hopes and dreams felt like they were thrown away.” (participant 4)	Episodic grief associated with life’s milestones “We went through stages where we still have stages of grief as she gets older. She just had her 16th birthday. That was a really hard one for me. All the “should haves” always come back up, it seems, a lot around birthdays. ... I feel like I have this at every birthday but especially her 16th. We should have been going and getting her driver’s license, and we should be looking at colleges, and we should look at finding her prom dresses. Instead, we’re making sure her wheelchair fits or make sure her seizure meds are helping. You completely realize, over and over again, the reality of her life is never gonna be what we thought it was gonna be.” (participant 14) Grief prior to diagnosis and excitement at the time of diagnosis. “Well, like I said, this was a slow burn for us ... she’s premature and then she started having seizures and then we were concentrating on our therapy. Getting her back up to speed. Then, we were realizing she’s not caught up, which that was probably my plateau. She’s not caught up and she’s never going to be caught up. Starting with school and IEPs and things like that, that was—those were some of my grief times. My sadness times. Finding out that we had a specific name for what she has was pretty exciting. It really wasn’t sad for me. We worked through all of that. Seriously.” (participant 8)

Younger children at the time of diagnosis

Older children at the time of diagnosis

Acute onset of grief at time of diagnosis
“We had to go out to the car, and I had to Google this as we were driving home. It was on Googling it that I began to have any real inkling of how serious it was. I remember this was—sorry, I’m gonna cry now. It was December, and the appointment had been at the end of the day. It was daylight when we went in and dark when we came out. I just always felt this was some analogy of our life, that we just came out into the darkness. The first night was so bad. You just bring your child home, and all of a sudden, I felt very disconnected from her. I felt like I didn’t know who she was anymore. She was living, but her diagnosis felt like a death sentence to me. She was this living body and nothing else at the time. We just felt such desperation. We felt so low.” (participant 25)
“I guess it was—I don’t know. You had hopes during your pregnancy and after she’s born. She’s born healthy, so you assume. You’re told that the seizures might go away, so you hold on to hope it will go away, and if nothin’ more, but then when you find out that there’s a diagnosis, and the blanket expectation of what CDKL5 was, all of our hopes and dreams felt like they were thrown away.” (participant 4)

Episodic grief associated with life’s milestones
“We went through stages where we still have stages of grief as she gets older. She just had her 16th birthday. That was a really hard one for me. All the “should haves” always come back up, it seems, a lot around birthdays. ... I feel like I have this at every birthday but especially her 16th. We should have been going and getting her driver’s license, and we should be looking at colleges, and we should look at finding her prom dresses. Instead, we’re making sure her wheelchair fits or make sure her seizure meds are helping. You completely realize, over and over again, the reality of her life is never gonna be what we thought it was gonna be.” (participant 14)
Grief prior to diagnosis and excitement at the time of diagnosis. “Well, like I said, this was a slow burn for us ... she’s premature and then she started having seizures and then we were concentrating on our therapy. Getting her back up to speed. Then, we were realizing she’s not caught up, which that was probably my plateau. She’s not caught up and she’s never going to be caught up. Starting with school and IEPs and things like that, that was—those were some of my grief times. My sadness times. Finding out that we had a specific name for what she has was pretty exciting. It really wasn’t sad for me. We worked through all of that. Seriously.” (participant 8)