We all woke up this morning thinking it would be a normal day. It was not.
Our 6 year old Axel had seizures for about a year which were sort-of controlled by meds. The seizures ramped up to a few times a week and today, he had a seizure for about 5 hours total. 1 hour at home where I witnessed him lose all mobility and bowel control, and somewhat unconscious through it all. He climbed into the bathtub at onset, his most hated place, and continued to seize until my husband was able to bring him to emergency. The dr called to talk about our options. Even phenobarbital would not stop his seizures. We went to say goodbye. He was on a gurney and could not move. His eyes were nearly closed. But I held him. I talked to him and he cuddled his nose into my neck and I know he could smell me. His breathing was labored but that 20 minutes I spent with him he seemed to be taking peaceful breaths if that makes sense. Almost like relief breaths. His body was done, and we could tell. When the sedative started he seemed so relieved to be sleepy. I held him and talked to him and kept saying let’s go night night in mom and dads bed (what we said every night). I think I said mommy’s here and I love you about a million times.
He seemed relieved to be sleepy. It was more peaceful than I thought it would be. Maybe because my heart was aching to see him in such agony.
I’m home now and just want hold him. I miss him so much. Love you, Axel.