The feeling of conflict is one I'm growing weary of. The feeling of not knowing which to feel, heartbroken or elated.
I remember having a conversation last January with Amy.. She shared that she was afraid of 2012. Of the things that would unfold during the year. Two of her fears happened. She lost her big sister and she lost a grandparent. My delight of 2012 came to life on April 25th. I knew the year could be hard but I knew I was going to meet my son, so what could bring me down. Besides, I say it every year.. it is just that. A year. A season of time with a different number at the end of it from the season before but still everything happening between the numbers is life. Life never stops with a number. It doesn't get better with a number, it doesn't necessarily get worse. I feel tempted to hope for a good 2013 but I think, the saddness I have from losing family will still be here no matter the year. The joy I have from my boys will still be here no matter the year. So why focus on "the new year" or "last year" ...life keeps going no matter the date.
My Nana used to take my sister Catie and I to the SF Ballet to see the Nutcracker when I was young. My mother would send us with our prettiest, matching dresses. Curlers often sat in our hair on the drive down to South City to Nana's house. Nana would pull them out and brush through our curls often leaving us crying. We must have driven her nuts. Then came the tights and slips.
"my tights keep falling down nana, can I please not wear them?" I'd ask, hoping to get away with it just this once.
"no. if they don't stop you can stick your panties over them to help hold them up." she said with an irritated voice. Trust me, that never happened. I just continued to pull them up. We'd walk along the street in our little dress shoes, cold from the cool winter air in the City. She'd take us to our seats and just before the ballet started she'd say, "enjoy my loves." and it would begin.
This year while laying on the couch, I was complaining to my husband about my tights. "I hate that they come up so high and then they fall down." He quietly listened (well, uh. I think) while sitting at the computer.
"I have always hated tights. I don't know why I even wear them.." Then I started laughing and sharing my "panties over the tights" story. A little conversation later he said, "I'll take you to see the nutcracker."
"No no.. you'd be so bored, you don't wanna do that. Its ok! I'll see it another day." I said.
He looked up at me with his sweet blue eyes, a little smile on his face and told me, "really, I'd be happy to take you."
And so we went.. We got dressed up, he treated me to The Melting Pot (hello favorite!!) and we hurried down the street to the ballet in our dress shoes. Heels are more uncomfortable to speed walk in than tights and dress shoes by the way.
I sat holding my husbands hand and watched the ballet. I loved every minute of it. I kept looking over at my (yawning) husband and couldn't believe how handsome he looked. How romantic he was to take me. How lucky I was to be holding his hand. Still, I felt conflicted. There were so many young girls all dressed up with their grandmothers. I felt sad and anxious to see my Nana again or see Catie beside me. I was so overwhelmed with love, gratitude and excitement all thanks to the love of my life and still I hurt.
Its hard to understand this conflicting time. I feel guilty for being happy, like I shouldn't enjoy a wonderful time. I also feel bad for feeling sad when I should just be happy. I should just take my own advice, "Do less thinkin' and more drinkin'" of course, that is a joke. Don't get your tights in a twist :)
We grew up seeing Santa at the police department every year. My mother would dress all of us in Christmas attire, (don't forget the tights!) and drive all 6 of us to my Daddy's work. It was always a highlight of the season. There were crafts, food and most importantly our dad in uniform. I still feel proud to see him all dressed up in uniform like I did when I was little. Even when he was a detective I felt so proud to see my dad in a tie with an office (as a kid, his cubicle was an office lol). This year I dressed up my boys (no tights!) packed them off and headed to the P.D. for the Christmas party. We didn't sit in a cubicle this time, we sat in the Captains office. We visited with the Chief. I did crafts with my son and then watched as my little boys sat on Santas lap with such excitement and joy. It was like watching myself as a kid! The way Joey looks at his Poppie in uniform, so proudly. The way he was so excited to ask Santa for a bike. The way Owen cuddled into Santas coat. It felt so amazing!! All of it. The excitement of my dad's promotion, the excitement of my boys seeing Santa and loving it. It all felt amazing like I could just burst with happiness. At the very same time though, I had to hold back from bursting into tears. I watched as my parents sat Annie on Santas lap. In the same place Catie sat just last Christmas. Catie loved Santa! Now she was gone and my parents were soaking in the moment with Annie before it becomes just a memory also.Whats a promotion when you have just lost your mother and your daughter? Whats a visit to Santa when your daughter, the biggest Santa fan, isn't there to enjoy the moment with you? My parents are hurting and I see it. Theres nothing I can do to fix it.
These are just to recent examples of this feeling of conflict. Memories being made with my husband and my boys, but the "firsts" without my "twin." I feel hopeful at times that the feeling will go away, or at least lessen. I often tell Kyle that one thing I hate more than people being disrespectful or impatient about the grief I feel, is the people who have lost loved ones years and years ago who still cry, who share with me how much it hurts still. I hate that more because it makes me realize that this pain isn't going to leave.
This post is all over the place. choppy, messy, feels strange. But thats just how I have felt lately. Conflicted. Choppy, messy, all over the place. Until it changes all I can do is continue hoping in God, because thats the only way the pain is bearable. Rather than hoping the pain will go away. Also, I'm working on not giving into the sad stuff but trying my hardest to soak in the happy stuff as much as possible...
No more rambling, I really should have waited to post this until I could organize it better. Oh, and NO MORE TIGHTS. ever..
Wednesday, December 19, 2012
Saturday, December 1, 2012
Holy Roller
She was a Holy Roller. At least, that is what I called her often. Above is a picture I snapped of her while praying in church one Sunday morning. She was a true believer in Jesus Christ. She didn't have the "christian talk" down.. the elegant use of Bible words and Jesus phrases. She just spoke from her heart and her heart was filled with love for Jesus. When she couldn't speak any longer, she still reflected a true joy and complete peace that I believe could only come from knowing she had a Savior. When I doubted my faith, Catie reminded me to continue believing. When I felt angry and wanted to walk away from my faith, Catie reminded me that life was too short to be so angry. She kept me grounded, she kept me believing. Many people would say that I should be less focused on a human, more focused on God. But the truth is, God used Catie to keep me close to Him. Obviously this post is going to make some people uncomfortable. So be it, this is what I believe. I mean really, if this makes you uncomfortable, you should hear me talk about keeping a marriage healthy..(wink,wink..)
Not long after I found out about Catie's diagnosis, I started digging into the Bible. I wanted answers, I wanted details. I wanted to know just where my sister was headed and where I'd meet her after this life. I found and continued to read Revelations 4. Here, John talks about his moment when he is before the Throne of Heaven. He describes exactly what he sees in detail. He tells us what the angels sing over and over. Because of my love for music, and my sisters love for music, this chapter was very comforting to me. I still get goose bumps when reading this chapter and thinking about what it will be like in Heaven.
Revelations 4: After this I looked, and there before me was a door standing open in heaven. And the voice I had first heard speaking to me like a trumpet said, “Come up here, and I will show you what must take place after this.” 2 At once I was in the Spirit, and there before me was a throne in heaven with someone sitting on it. 3 And the one who sat there had the appearance of jasper and ruby. A rainbow that shone like an emerald encircled the throne. 4 Surrounding the throne were twenty-four other thrones, and seated on them were twenty-four elders. They were dressed in white and had crowns of gold on their heads. 5 From the throne came flashes of lightning, rumblings and peals of thunder. In front of the throne, seven lamps were blazing. These are the seven spirits[a] of God. 6 Also in front of the throne there was what looked like a sea of glass, clear as crystal.
In the center, around the throne, were four living creatures, and they were covered with eyes, in front and in back. 7 The
first living creature was like a lion, the second was like an ox, the
third had a face like a man, the fourth was like a flying eagle. 8 Each of the four living creatures had six wings and was covered with eyes all around, even under its wings. Day and night they never stop saying:
9 Whenever the living creatures give glory, honor and thanks to him who sits on the throne and who lives for ever and ever, 10 the twenty-four elders fall down before him who sits on the throne and worship him who lives for ever and ever. They lay their crowns before the throne and say:
11 “You are worthy, our Lord and God,
to receive glory and honor and power,
for you created all things,
and by your will they were created
and have their being.”
to receive glory and honor and power,
for you created all things,
and by your will they were created
and have their being.”
I'd read this over and over. I'd sing the words written here and "practice" for Heaven. It brought me peace. Then a few years ago, a song was written called Revelation Song. It quotes this part of the Bible in the song. Its beautiful! Its my favorite. Now, I love it more than ever...
When I sing this song now, I not only picture what Heaven is like, but I picture my sister there. I can see Catie singing with a HUGE smile on her face.. dancing like a ballerina, flawless, joyful, peaceful, whole. It brings me so much peace to close my eyes and see this. Even more than that, I feel close to Catie. When I sing this song I feel like we are singing together since the Bible says this is what the angels sing without stopping. Eternally praising God. So when I join in and sing the same song they are already singing in Heaven, its like Catie and I are worshiping together again.
I don't know how to explain it. I guess if you share the same faith it would make sense to you. If you don't share the same faith than you're probably trying to figure out when and how you should drop me off at the nut house. Either way, I believe in Jesus Christ, the same Jesus that Catie so strongly believed in. He is my Savior and one day when I die I believe that by his grace I will be singing the very same words that are in Revelations 4. I'll be singing with Catie, with my Nana, with angels. And until that day, I can sing those words here and feel so close to them knowing that they are doing the same thing while watching down over me.
Catie may have been a bit strict at times on her "religious" beliefs.. all those little things that Christians like to argue about over a hot cup of coffee. But it was her FAITH that stood out the most and what God used to keep me close to Him.
This is the link to the song here
This is the link to the song here
Thursday, November 1, 2012
She's Completely Fine Now
She was lying in bed, right underneath the same painting of the Poppy Flowers that I have blogged about a few times before. Its the painting that I'd nap under while staying for a visit and often day dream while starring into. This time I looked at it and didn't feel safe like I had in visits past. This time I was scared, angry and heartbroken. My Nana was going to pass away any day and this would be the last time I saw her. She was thin and frail. She almost didn't look real. Her brown hair was still parted and swooped over to the side like she always wore it, resting over her tiny face. Her lips were pink and shiny because even sick, she wore her lipstick.
I wasn't going to visit again because I was scared to. I had said good bye to Nana at our family reunion just weeks before this day and she still looked like, sounded like, and left lipstick on my cheek like my Nana. I was afraid that I'd be left with a similar image as I have with my sisters death if I saw her again. So I decided to stay home and wait. My mom was caring for her in her last week of life and I clearly remember the feeling of Catie's last days and hours. They were long and tiring and blurred together. I thought maybe my mom could use a little break and some fresh air so I decided to drive down to south city. My mom had text me and said "its ok not to come, this is very hard to see." I gave it alot of thought, but this is all I could think of.
This is a picture of my Poppie and Nana just 5 months before Nanas death. They were walking down the hall at Kaiser Vacaville, headed for Catie's room. They knew driving to Vacaville that this very well could be the last time they saw their granddaughter and the condition she was in was anything but easy to see. I thought about my Nana sitting beside Catie's bed, holding her cold hand. She and my Poppie sat waiting with their son, their daughter in law and their grandchildren, for Catie to leave this world. I remember starring at my Nana and feeling amazed, once again at her strength. I have known very few, if any women, as strong as my Nana was.
I text my mom back and told her when I'd be at the house to take her to lunch. All the way there, feeling nervous and honestly scared, I continued to think to myself, life IS hard. Math is hard, work is hard, raising kids is hard, lots of things in life are hard. But you get through each thing. I kept thinking how hard it was for my Nana to see Catie die, but she was still there none the less. Seeing my nana this way was going to be hard but she would come see me if it had been the other way around.
I received a sweet hug, kiss and words from her that day that I will forever treasure. I often saw her face in my mind. Sick and weak. It was so hard to remember her healthy until I had this dream...
I drove down to South City with the boys. We were going to pick up Poppie and grab a cup of coffee with him. I walked through the door of their house and searched every room for him. I walked down the hall and turned to the spare bedroom and my poppie was there, standing tall and smiling from ear to ear. He pointed into the room. I peaked around the corner and there was my Nana, standing up making her bed. It was the hospital bed under the painting of the Poppy flowers and all of the blankets were folded in a pile. She looked like her normal self. "oh my Kelly! Its good to see you my love, how are you?" She said as she set the blankets down and reached for me. I looked at her and asked, "Nana, what are you doing? You're not in your bed?" She shook her head and said, "I'm fine now, I'm completely fine now."
...and then I woke up. It was a very real dream. I got out of bed and walked to the kitchen for a drink of water, I checked on my boys. Trying to wake up and get a grasp on what was a dream and what wasn't. I cried until I fell back to sleep because I miss her so very much. But I am so so thankful for that dream. It was so real that it is now the first image that comes to mind when I think of her, rather than the image before of her sick.
I want to write more about her. Writing seems to help me really take time to focus on the people and things that I love. It helps me to really remember little details, but as hard as I try to sit down and write about how incredible she was or how much she meant to me I am at a loss for words. I feel like there are no words to describe a woman like my Nana. She was one of a kind. I'm sure the words will come to me eventually, but today I am just left speechless. I wish so badly I could call her and chat like I used to do, but I'm so thankful to at least have had that dream.
I wasn't going to visit again because I was scared to. I had said good bye to Nana at our family reunion just weeks before this day and she still looked like, sounded like, and left lipstick on my cheek like my Nana. I was afraid that I'd be left with a similar image as I have with my sisters death if I saw her again. So I decided to stay home and wait. My mom was caring for her in her last week of life and I clearly remember the feeling of Catie's last days and hours. They were long and tiring and blurred together. I thought maybe my mom could use a little break and some fresh air so I decided to drive down to south city. My mom had text me and said "its ok not to come, this is very hard to see." I gave it alot of thought, but this is all I could think of.
This is a picture of my Poppie and Nana just 5 months before Nanas death. They were walking down the hall at Kaiser Vacaville, headed for Catie's room. They knew driving to Vacaville that this very well could be the last time they saw their granddaughter and the condition she was in was anything but easy to see. I thought about my Nana sitting beside Catie's bed, holding her cold hand. She and my Poppie sat waiting with their son, their daughter in law and their grandchildren, for Catie to leave this world. I remember starring at my Nana and feeling amazed, once again at her strength. I have known very few, if any women, as strong as my Nana was.
I text my mom back and told her when I'd be at the house to take her to lunch. All the way there, feeling nervous and honestly scared, I continued to think to myself, life IS hard. Math is hard, work is hard, raising kids is hard, lots of things in life are hard. But you get through each thing. I kept thinking how hard it was for my Nana to see Catie die, but she was still there none the less. Seeing my nana this way was going to be hard but she would come see me if it had been the other way around.
I received a sweet hug, kiss and words from her that day that I will forever treasure. I often saw her face in my mind. Sick and weak. It was so hard to remember her healthy until I had this dream...
I drove down to South City with the boys. We were going to pick up Poppie and grab a cup of coffee with him. I walked through the door of their house and searched every room for him. I walked down the hall and turned to the spare bedroom and my poppie was there, standing tall and smiling from ear to ear. He pointed into the room. I peaked around the corner and there was my Nana, standing up making her bed. It was the hospital bed under the painting of the Poppy flowers and all of the blankets were folded in a pile. She looked like her normal self. "oh my Kelly! Its good to see you my love, how are you?" She said as she set the blankets down and reached for me. I looked at her and asked, "Nana, what are you doing? You're not in your bed?" She shook her head and said, "I'm fine now, I'm completely fine now."
...and then I woke up. It was a very real dream. I got out of bed and walked to the kitchen for a drink of water, I checked on my boys. Trying to wake up and get a grasp on what was a dream and what wasn't. I cried until I fell back to sleep because I miss her so very much. But I am so so thankful for that dream. It was so real that it is now the first image that comes to mind when I think of her, rather than the image before of her sick.
I want to write more about her. Writing seems to help me really take time to focus on the people and things that I love. It helps me to really remember little details, but as hard as I try to sit down and write about how incredible she was or how much she meant to me I am at a loss for words. I feel like there are no words to describe a woman like my Nana. She was one of a kind. I'm sure the words will come to me eventually, but today I am just left speechless. I wish so badly I could call her and chat like I used to do, but I'm so thankful to at least have had that dream.
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.
"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...
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...
Saturday, August 11, 2012
Heavenly
About 11 or 12 years ago some cousins of ours offered our family 1 week stay at their timeshare in South Lake Tahoe California. They have continued to offer it to us every year since. What a gift. They will never know the impact that their generosity had in our lives and the memories that were made because of it.
It was easily the highlight of our family's year, every year. Saturday through Saturday, there was nothing but relaxation and family fun. My mom would cook ginormous feasts for every meal. You'd catch her "resting" for a quick moment on the couch during the afternoons just long enough to make a list of what she needed for that evenings dinner recipe. I've got two words for you: Philadelphia Cheesecake. If you're interested in how good it was I can show you my right thigh where some of it, even years later, has stuck with me. My dad was very predictable on these trips. You'd wake up in the morning and he'd be sitting on a chair right outside the back door with a cup of coffee sitting on the table next to him and his Bible in his hands. If he wasn't sitting there he was either by the pool or getting into whatever my mom was trying to cook in the kitchen. My siblings and I spent every day in the pool. We'd take breaks to watch a movie, go for a walk or play some soccer, but 90% of our day was spent in or around the water. The biggest (and I don't mean that because of her size) fish of us all, was Catie. You could not get that girl out of the water. When we first started going to Tahoe in the summers she swam without a life vest and over the years got to the point where she had a life vest on and had to be pushed into the pool. Sounds horrible.. like we would just grab our blind sister, too immobile to step into the water, and push her over the edge of the pool. But you have to understand that she loved this!! She would fall into the water, her legs bent stiffly and her arms in front of her. You'd see her fall under the water for a split second and pop right back up with an explosive laugh. Because her face would dip into the water, her hair would always end up wet and stuck down over her eyes and nose hiding her entire top half of her face. All you could see was her beautiful smile reaching from ear to ear. I remember the last summer that she was able to be in the pool, someone had to be behind her the whole time so that her face would stay out of the water. She would float there, smile side up. The last summer that she ever went to Tahoe she didn't make it in that pool. I can't even think about that.
She loved those weeks in Tahoe. We all did. My moms mother, our Nonnie, would come up and always take us shopping. My Dads parents always came up for a few days and we'd spend the evenings painting Poppie's toes and playing cards with Nana. They were completely wonderful weeks and some of my very favorite memories made in my life.
My family spent a little bit of time up in south lake this last week. Not at the townhouse, but still in the same area. We spent an entire day at Pope beach as a family and I lost track of the times that I counted all the heads in the water and on the beach. Constantly trying to figure out who was missing and every time holding back tears when I realized it was Catie. It was a wonderful day together, only because of God's faithfulness and His mercy. But it was a very hard day. How do you explain that to people? Oh the times I've been asked, "you're leaving again?" "Lucky you, another vacation, huh?" If only I could explain that it isn't a vacation, it is an attempted escape from reality. A hope that if you get away from the busyness, you can breathe, maybe not feel any pain. Maybe feel completely happy? Maybe maybe. But enough of that rant. We did get to be away as a whole family that day and we did rest. We were able to talk about Catie uninterrupted by the busyness of life and we were able to laugh. We even ate really well. Not cheesecake, but it was still good. Like I said, because of God's love toward our family we can still enjoy moments together even through the pain.
Now I don't know if its survivors guilt or a coping mechanism. I'm not going to bother trying to figure it out because I'm still having a difficult time trying to remember what day it is and what I have going on. But whatever it is, made me go for a run the morning after the beach. Ever since Catie left I have been addicted to exercise. It gives me something to focus on every single day. My vice. While I am working out my mind is either completely focused on my work out so I'm not thinking about the loss of my sister, or it allows me to work off the anger I have from losing her. Its different every day but either way, its helping me. Keeping me busy. On this day in Tahoe I was feeling angry. Also guilty. I was in South Lake Tahoe with my entire family, except for Catie. I felt horrible for being there, in one of her very favorite places, without her. For enjoying time with my boys, siblings and parents the day before at Pope Beach without her. I also felt incredibly sad. Like the kind of sad that physically hurts my body and takes my breath away. So I decided to try and relieve some of these feelings with a good work out and one that would help me to really focus on her. I ran and walked up to the townhouse where my family used to stay. Alot of people would tell me thats not healthy, or that I shouldn't put myself through something so emotional. Alot of people however, don't know what its like to lose a sibling, or have, and have dealt with it differently. For me, this was very healing. I felt like I had spent the entire day before with everyone in my family and was about to do the same for the second day in a row but I had to spend time with Catie. I couldn't be in Tahoe and not set aside quiet time by myself to remember her. So off I went. 5:30am came and I stepped outside into the fresh, crisp Tahoe air. I headed down the street with my ipod in and headed toward the townhouse. I cried the entire way there. Stopping at different times to catch my breath, wipe away some tears and remind myself to keep going like Catie always did. I came up over the hill and there was the Heavenly Townhouses sign. I began to sob while I sat underneath the sign for a minute. I closed my eyes and could see and hear my sister.
The excitement would build as we pulled into the parking lot each summer, telling Catie, "we're here!!! yeah baby!! Tahoe here we come!!! We made it!" she'd start clapping her hands and then slap them down onto her legs while she lifted her feet and then clap again. Her smile would reach ear to ear and she'd shout and holler, "woo hoo!! yeah baby!!! gotta love it baby!!" and thats how the vacation would start each year.
I sat there eyes shut, playing that memory over and over in my head. It was so clear that I felt as though I could hear her happy voice and touch her clapping hands. I'd also replay the memory of her being pushed into the pool, over and over.
I continued up the hill to a special spot kyle and I found years ago where'd we'd sit and watch the sunset together. I sat there that morning and cried and laughed and cried some more. I thought about the name of the townhouses as I looked out over the lake. It never crossed my mind really. But that day it did. Heavenly Townhouses. Called that because it sits at the base of Heavenly right across the street from the ski lift. Heavenly, because its considered one of the most beautiful places in the world and we had been spending time there as a family all these years. I chuckled as I realized that Catie now knows what Heavenly really looks like. For years, she spent time in a place named Heavenly and was blind. Unable to see what people travel across the world to see, and now she has perfect vision and can see a kind of heavenly that we could never even imagine. A true heaven. I just sat there blown away watching the sunrise over the water, amazed by the beauty that God created. I felt thankful that I could see this place and enjoy it knowing my sweet sister could see a more perfect sunrise along with me that morning
I enjoyed the rest of the time in Tahoe with my family. We really rested together. But I couldn't have enjoyed it as much if I hadn't spent that time remembering my sister. I feel like even though she's not here, I was able to see her more clearly that day than any other time since she passed. I miss that girl so badly...
Monday, August 6, 2012
Dancing Queen
Our froyo date quickly came to an end and we got in the car to head home. Hopeful that she would respond in a positive way, I turned on the radio and found some Garth Brooks. With Annie, you never know if turning on the radio will get you yelled at or start up a round of karoke but on this day it was a hit. I saw that she liked the song so I turned it up as loud as I could and rolled down her window.
"hey girl!!! shake it!!! lemme see yo dance moves honay!!" I shouted to her.
She immediately sat up in her seat and started dancing her tail feathers off. Along with her dancing was a lot of laughing. REAL laughing!! I just stared at her and tried to keep my eyes on the road at the same time. It was one of those very rare moments with her where you felt light. I'm not sure really how to explain it other than using the word "light." Like, you aren't walking on egg shells wondering when she will start screaming and raging which leaves your whole body tight and tense. Instead, you feel light like a feather, floating carelessly through the sunshine. Finally, I pulled out my phone and started video taping her. This was a moment that I had to be able to look back at, especially on bad days.
"Kel!! I'm gonna kiss boys!! don't tell dad!" she shouted as she laughed uncontrollably. Her light brown hair was pulled back in little rubber bands with soft frizzy whispies curling around her hairline. Her eyes were bright and happy, opened all the way except for when she'd squint out of laughter. She was relaxed and enjoying herself and with that came a big smile. Usually, if you ask her to smile, like for a picture or something, she does this weird forced smile where her cheeks are pulled across her face like a rubber band. But this was not one of those smiles.. it was natural and explosive. She waved her hands all around and shook her shoulders. She looked so much like Catie.
We continued down Elmira road. I was so caught up in the moment that I wasn't paying any attention to where we were until I looked over and just passed this little dancing queen, outside her window were the large iron gates to the cemetery where Catie is laid to rest. My stomach turned and my throat felt as if it had shut. My eyes filled with tears and I felt like everything was suddenly paused. In a split second I thought to myself, "there is no way. She is so so happy and she has no idea that we just drove past her future resting place. Its empty now, nothing but a spot of green grass next to Catie's grave sight. Before I know it, this laughing, dancing, singing sister of mine will be gone also. Unable to be seen, heard or touched, She will leave this world just like Catie did."
I did my best to keep laughing out loud knowing that as long as I sounded happy Annie wouldn't know I was crying.
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