Comfort in Routine (another seizure)

Tonight Sophi had another "seizure episode" - You'd think at this point I'd feel comfortable saying Sophi had a seizure, but I'm not. I am not in that place tonight. Seizures are not always convulsions like you see and mostly what you hear about. Tonight Sophia had 'erratic behavior' and not the normal two year old tantrum, although that is what it looks like.

She was happy as a clam tonight playing with some kids from church. We have been having some people from church over every other Sunday for couples classes. Really fun, we all enjoy it and we are learning so much about our spouse. The neighbor, Gabrielle, a beautiful spirited 16 year old girl comes over to watch the kids in Sophia's room. They play with toys, tonight I peaked in and saw they were dressing up... Sophia was dressed in her bumble bee costume with a fairy wand, she was twirling around and pretending to sting anyone who came near her. She was perfect. Happy, excited to be playing... and as that moment passed Gabrielle said she climbed into her bed and got her pacifier (yes, she still has a pacifier but we only keep it in her bed), in that instant her joy turned into terror. Gabrielle said she turned around to look at Sophia and Sophia started screaming "You scared me...." We heard her from the living room. Gabrielle came out and Aaron (my sister's boyfriend) ran in, I was right behind him. Sophia was laying in her bed, red faced and screaming. I picked her up and soon realized this was the 'erratic behavior' that she experienced the night we came home from vacation in May, this has happened one other time. She was screaming that she was scared, her teeth hurt, I couldn't understand her words in the midst of her screaming. I kept reminding myself she can't calm down, she isn't in control.... all while telling her 'calm down, it's OK'. Everyone in the room was staring at her, she probably didn't even realize, but I thought how embarrassing for her, I carried her into the bathroom and put a cool washcloth on her head. She was saying that the light hurt her eyes, it's not even really crying just screaming. Tony came in and I passed her off to him. Poor Gabrielle was in the other room with Troy and looked terrified. Trying explaining a seizure that looks a lot like a tantrum... some of the people from church thought she was mad because the other kids were playing with her toys- not the case. I understand why they thought that but their ignorance was aggravating, when I knew she wasn't in control and they just didn't understand. I am embarrassed for her, and thankful that she won't remember it. I went to walk Gabrielle home, while Tony stayed with Sophia who was still screaming... I knew the only thing to do was comfort her and wait for 'it' to let go. While we walked Gabrielle asked me lots of questions, I think she thought it was something she did... she was so kind and brave, how scary for her. Her brother Jonathan is 8 and he had come over with her, Sophia calls him "Johnny", he asked me if it happens everyday, "thankfully no" I said. You know Gabrielle has only watched the kids while we were in the house and I never thought to explain Sophia's seizures with her... she knows Sophia is epileptic but she's never watched her alone and I never talked much with her about it after that.

When I got back Lana (my sis) and Aaron were taking care of Troy and Sophia had just fallen asleep. She was exhausted and sweaty. I got Tony a bottle for Troy. He is the peace in the midst of chaos... smiling, laughing, trilled to be awake past his bedtime. The guests all left, thanks to Lana and Aaron for taking over as host while Tony and I had our plates full. I did call some of them to explain why I just ran out on them.

I went in to sit with Sophia for a moment. Sleeping sound, she may have looked content but knowing what the past half an hour looked like, I felt sadness for her. The wash cloth on her head still, I took it off, she was still sweaty. She loves Vics on her nose at night and I went to her closet and got it, rubbed a bit on her nose before putting it back. She didn't even wake up, I kinda hoped she would so that I could tell her goodnight, say her prayers, and sing songs with her before bedtime. Sophia sleeps with more stuffed animals than I can count and she loves them in a particular order, something silly that only a mommy would know. Her animals were spread on her bed and the floor. Her room was messy from the kids playing. I quietly picked up the toys. I lined the animals up on her bed. "Talky Bear" with butterfly, the camel, "Sarah Dog", "Bingo".... they all have names, it's important to her, and in that moment it was important to me. I hate her dawdling at night while she lines up all her animals before bedtime... but tonight I wished she had been awake with me while I put them all in a row, in her special order. When she wakes up I want her to think she went to bed happy, like she always does. I turned her CD player to the classical music that she listens to before bedtime. I made sure both of her night lights were on. I put "Nina Baby" in the stroller.... comfort in routine, if not for Sophia but for myself. She will be fine in the morning, she won't even remember.

The same emotion every time... so thankful to God that this is all we have to deal with, thankful that she will be fine in the morning, thankful that she won't remember it, sad that this thing has to happen, sad that she isn't in control, scared that it happened again, scared that it will get worse... and still guilt, guilty for feeling sad when I know in the morning she will wake up and sing "it's a new day, a new day, a day that's given to me, everyone gets one you see, every new day is a gift that's free".

She is my baby and I love her, every piece of her, even the pieces that make me sad, I love her always.