"He walked right downstairs to Annie and said, 'Hi Anne!' and then he gave her a hug."
I felt as though a weight had been lifted off of my shoulders when I heard that. I was very afraid it may take more than 24 hours for Joey to hug or go near his Auntie.
Annie had gotten off the school bus yesterday and was buckled in the car between her nephews as Kyle and I drove the kids to Kohls. We had her wheelchair in the trunk of the car and her tiara in her hair. We planned to trick people into thinking we were pushing a real princess around the store in a carriage. Annie loved the idea and was very cheerful as we pushed her through the store, Joey sitting on her lap the whole time. The two of them giggled and teased each other. I snapped a picture of the moment in a mirror as we walked by. I felt so happy and excited to share this moment. Unfortunately, it would end quickly.We got in the car and as it was very hot outside I thought I'd sit her in the front seat with the AC blasting on her rosy cheeks. Thank goodness for that thought. I squeezed my wide load in between both car seats in back and Kyle drove. As we pulled out of the parking lot, Annie grabbed her door, opened it and said, "I'm getting out!" It was if a switch had turned on and she began screaming. Kyle reached over, shut her door, locked it and grabbed her hand. I unbuckled and jumped forward to grab my sisters hands, and the fight was on.
This was a daily struggle with her not long ago. This would occur all day every day. These rages consumed her daily life. She hasn't had rages like this for some time and when she does its very unexpected. Its similar to a seizure in the sense that it just starts out of the blue, and ends suddenly as if it had never happened.
It was a 10 minute car ride and I watched as my husband drove our little corolla like it was a race car. I remember feeling as though he were a super hero, a protector. The feeling you get when the good guy saves someone from the bad guy in a movie. He drove so carefully to protect his little sister, wife and boys. He drove with one hand, the other holding onto Annies ankle to keep her from kicking the window like she had been doing. I had a grip on her wrists, holding as tightly as possible as she continued trying to unbuckle or grab the door. The whole time, screaming at the very top of her lungs. The kind of loud scream that makes your eardrums rattle and ache. She continued shouting, "I want to go to heaven!!" Everytime I lost my grip, her fingernails would bury into my skin. I finally was able to use a technique on her fingers where I'd squeeze just right (thanks for teaching me millions of times before Tony. ahem.) and she wouldn't move. She began to sob, giant tears running down her face. "That hurts!!! Just let me go to heaven!" she'd shout. I burst into tears, apologizing to her but knowing if I let go she'd hurt herself.
I looked over to my right and there was my Joey. His whole body shaking, his eyes closed. He had his hands over his mouth and was rocking his head back and forth. He cried and cried begging Annie to stop. To my left was Owen, shaking and crying and looking at me confused as if I was hurting him.
We made it home and Kyle quickly brought Joey into the house. I pulled Owen out of his car seat and with him in one arm, I slowly linked the other arm with Annie and pulled her away from the car as she punched at the windows, and lowered her to the ground. As soon as she sat down she was quiet. She stopped, just like that. Kyle came out and grabbed Owen from me and I just plopped down to the ground next to Annie. I put my arm around her while she sat in the driveway. She told me again, "I want to go to heaven." I just sat quietly and said, "ok. do you want a Popsicle?" "yes." she said. She sat in the driveway eating her Popsicle, sweaty and shaking from her episode. I brought band aids out and sat next to her cleaning my scratches and assuring her that she was ok. It was just over. As quickly as it started, it had ended. She quickly began talking about her birthday, what she wanted to eat for dinner and about prizes she had won at school that day. I just stared at her crying. This is her life. It is not like Caties was. It is a daily battle for her and she has spent more of her life in a behavioral rage like that than not in one. She will be 14 this week and if she lives as long as Catie did she is more than halfway there. How do you process that? How do you accept it? I look down at my wrist.. covered in band-aids (if she messed up my tattoo I'm going to have to have a talk with her haha) and it reminds me of how horrible that 10 minutes were yesterday. It hurts so badly to realize that this will never go away. My sister will forever suffer until she takes her final breath. This isn't a self induced suffering. She isn't choosing to harm herself, she isn't choosing to be angry or fight people. Unlike many people I know, my sisters suffering is uncontrollable and cannot be stopped. I hugged her tight and told her how much I loved her. That I know she doesn't mean to get upset the way she does.
Kyle and I sat with Joey last night to ask him what he thought about Annie and her "fit." He had kept a big distance from her all day and at dinner repeatedly told us he didn't want to sit by her. I told him that she is his Aunt and we sit with our family. He sat quietly and ate but barely looked at her. When she moved he flinched. That is hard to see. I hurt for my baby sister, I hurt for my son. When we talked to him he said he felt "afwaid of Anne." He was also sad. I reminded him that Annie has a boo-boo in her head. Sometimes it makes her scream and get upset but she would never do anything to upset or hurt Joey on purpose. That its her boo-boo doing that, not her. We explained that she loves him so much and that she can still be his best friend. He said "ok" and got back to playing.
This is my normal, my family's normal, my husbands normal for the last almost 8 years, and now my sons normal. It is Annie's normal. Its traumatic and scary. It hurts physically and it hurts emotionally. I can say, now that Catie is no longer here, that it doesn't stop hurting. And that is why knowing my son left yesterdays battles in the past and hugged his Aunt today brings so much joy to my heart. He really really loves Annie and the two of them are so close. I pray daily that God will protect him from the hurt that comes from Batten disease, but I know just like Joey's Auntie struggles, he will also. Just in different ways. Its part of being a family.. our family at least.
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