Saturday, September 29, 2012

Through Good Times and Bad

I felt some pride, but mostly relief and thankfulness as my Dad spoke softly this morning of my son.

"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.

Wednesday, September 26, 2012

HE'S (been) HERE!

I sat there trying to tell myself not to worry about it, that it wasn't anything worth crying over. It was only a baby announcement. I had more important things to cry over. But I couldn't convince myself of that because I knew I was crying over more than a baby announcement. I was crying over this entire season of my life.

I pulled out Owens baby book to add a few dates to it. He's started eating cereal and sitting up on his own. He has started dancing and shaking his head "no." As I flipped through the pages to fill in little things here and there, I noticed the page was blank where it says, "my baby announcement." I freaked out. Initially I thought, "oh shoot! I sent them out for Joey, I need to send out Owens." then I realized that he had turned 5 months old on Tuesday. I quickly became angry with myself. How could I have forgotten these? I remember taking the photos for it the week he was born! I mean, not everybody even sends them out.. but I do. So how did I give birth to this little boy, take the pictures specifically for his announcements and then not send them out? Then I remembered, "Oh right. Catie died. Catie died and I completely forgot to send these out." and that folks, is why I started crying.

Owen was born Wednesday evening, April 25th. He met his Auntie Catie Rosie Friday, April 27th. She left this world on May 13th, just 18 days after Owens birth. You want to talk about a blur? sheesh.

 Catie went to the hospital the Thursday before she passed and Owen and I went to visit her. It was 8:30pm Thursday night and Catie was wide eyed, alert and speaking. I hadn't caught on to her behavior and what it meant yet. I remember my last visit with my beloved Nonni Ella just days before she passed. She was talking, dancing in her bed, and blowing kisses at everyone. I hadn't caught on that that evening was Catie's last burst of energy and life. I sat and held her hand as my Dad fed O. I looked over and said, "uh dad, can you hold his bottle up a bit more? He's just getting air." Dad laughed and apologized to O, telling him it had been a while since he had fed a baby. I looked at Catie laughing and said, "oh great Cate, Dads feeding the baby." She perked right up and laughed out, "Oh dang!!!" Moments after this she was wheeled out of her room for testing and Owen and I headed home. That was the last time I saw her brown eyes open and her smile.

Days later, after what seemed to be a very long weekend I found myself walking down the hall of the ICU with Owen in my arms. We were waiting for Catie to be moved to another room of the hospital but something had happened and she was still in her original room. I walked down the hall to see what was going on. As I approached the window of Catie's room, I could see my sister Mandy standing next Catie's bed holding her hand and sobbing. The curtain was drawn hiding Catie and mom from my view. I walked into her room quickly to ask what was going on, turning the corner I saw my sisters face and started shouting, "what happened?! why does she look like this?? she is supposed to move to another room!!! this is not supposed to happen yet!" I was angry, panicked and forgot I was even holding Owen. I leaned on the bed as mom explained Catie had had another large seizure while we were all gone. She had gone from sleeping and breathing loudly with pink skin to a dark purple-ish grey color and struggling with each breathe. I walked back down the hall to the waiting area where I knew family would be sitting. As I approached the waiting room, through the open door I could see a long time family friend, and what feels like one of my Aunts, sitting in the chair closest to the door. I remember placing Owen in her arms and telling her to hold him. I can remember people asking me questions and I just kept responding with "no" because I didn't want to be away from my sister one second longer. I heard my Nana grab my Poppie and say, "she's gone Jim." I turned around and said, "not yet" as I frantically left the baby and headed back to Catie. It would be hours after that when Catie passed. I remember sitting at the end of the bed holding onto her feet, just desperate to be holding any part of her. My Nana sat beside her with her hand laying over Catie. People came and went, my siblings, parents and grandparents didn't move. We sat with her and held our breath as she took each of hers. At one point, the same friend that I had handed O over to was in the room. She had just gotten off work and was able to come say goodbye just in time. Her husband passed away many years ago and I remember hearing her telling Catie to say hi to her husband for her. Her daughter, standing behind her, erupted into sobbing. I remember thinking, "all these years later they still hurt so much. I don't want this to happen. I don't want that hurt" as I watched them cry out of their own pain at her bedside.

I walked out to my newborn after Catie passed. Just days old he laid in his car seat, fast asleep. I just starred at him. I wasn't sure what to feel. I had just brought a part of me into this world days ago and watched a part of me leave just an hour before this moment. We returned to the same hospital 7 hours later with Owen because he had caught a virus while spending the weekend in the ICU waiting room. I remember not being able to put Owen down for days. People at Catie's service were congratulating me on him. I remember thinking it was strange.. like he had been here for months. This was the first time he had met any of his extended family. People asked to hold him and I told them no. I didn't want him out of my sight or my arms. The moment I took my eyes off my sister, she died. I felt that if I took my eyes off of my baby he would do the same.

The service ended and life continued. Owen hasn't stopped growing for a minute since. He is so beautiful and happy. This smiley boy, along with his brother, keeps me going. I'm sure when he's older I could tell him his brother had baby announcements and he didn't. I could tell him why and he'd probably not only understand, but laugh... What 18 year old guy cares about such things? But come on. Its me. He has to have one. His, "HE'S (been) HERE" announcements are ordered and on their way. Of course!!!!

If its not clear already, this has nothing to do with birth announcements and everything to do with the memories that come to mind when I realize what a blur my sons first months of life are. I wish I could say things are slowing down but they aren't and wont be any time soon. We have alot of big bumps ahead in our very near future, but at least his baby book is up to date. As of today at least...