Celebrating Camila

Today was a hard day. Today is also a good day though. It's a good day because it's a miracle that my sister Camila gets to celebrate another birthday. She's defied the odds against her and has survived this year when we weren't sure that would be possible. I don't have the power to make things better or go back to before her disease kicked in and wiped her memory, abilities and identity and today as I sat next to her I hoped there was a small part of her that still remembers me. She probably doesn't. But one day she will. Her body will be perfect. Her mind will be perfect. And she'll never have to live her nightmare again. Until then the only thing left to do is love. She might have forgotten me. But I won't forget her.

With that said though, today was still a hard day. I really felt like I should go see her. I don't know how much longer she has here so I was determined to make it happen. The only biological family members that she has had with this disease had all died really young. Today she's 37. She's already doing better than those before her. I decided to take Grant with me because he came with me to my last visit to her care facility and she really seemed to like him. At the time she liked all babies and one of the only few words she could say was "baby". On my drive up to see her I felt every emotion I could. I was excited and nervous and sad all at the same time. There's a lot of reasons of why I felt sad. One is that she even has to deal with this disease. It's very sad. She's a widow who has lost the love of her life and now has a disease that is wiping her memory of the loved ones she still has left on this earth. Including her four beautiful children. I'm also sad that Danny never got to know the Camila that I knew. She was my hero. Pollyanna and I both looked up to her so much and wanted to be just like her. We actually both wanted to be her at times. She was beautiful and kind and she really looked out for her little sisters. I'm really sad that I didn't get to share that person with my own little family that I have created and grown. I'm also sad that I didn't see the first signs of her disease as symptoms to something beyond her control. I judgingly assumed that her symptoms were a result of something else and at times by someone else. I'm also sad for her children. Sad that they lost both of their parents tragically. Their father is gone physically and their mother is gone mentally. That's just horrible. I'm also sad because I know that if Camila knew what her future would have looked like when she was much younger she would have hated this for herself. I hate this for her. I hate this disease that she doesn't even understand she has. It isn't fair to her and to everyone close to her. It is what it is though. I was also feeling excited. Excited because she's still here physically and there's a part of me that wonders if she's still "there" somehow and just unable to communicate with us. I was excited because I believed there was a chance she still remembered me. Just two weeks ago while at the family Christmas party I was sitting on a couch and Camila stood up from where she was sitting across the room and walked over to sit on the spot right next to me. I wondered if this was a sign that she did remember who I am. She's not able to talk to me or confirm anything but I was still excited to see her because I was hopeful. I was also excited for this visit because I had Grant with me and I was thinking that maybe their sweet innocent spirits would connect. That he would feel good around her and get her to smile. I was also nervous. Nervous because I knew there was a chance that my reasons of excitement would turn into reasons for sadness. Nervous because I felt that I would know after this visit if she remembered me or not and I was afraid I wouldn't like the answer to that. My thoughts were taking me round and round through all three emotions for the entire hour long drive until I finally got there.

When I did get there Grant was asleep so I waited fifteen minutes until he woke up and I could take him inside. It was also lunch time for Camila and the other residents so I was trying to wait that out as long as I could so that I could have more personal time with her outside of her lunch hour. When I got inside I was directed to a big room where Camila was sitting. She was at a table with three senior ladies who all had different forms of dementia. Unfortunately her food hadn't arrived yet. I was hoping to have arrived right after lunch but that didn't happen. I stood next to her and tried talking but she did not seem interested at all. She was actually glaring at me and I could tell she was in a bad mood. I told her happy birthday and that I was there to spend a little time with her. There were some artwork near the table she was sitting at so I pointed out her drawing to her and told her how great it looked and tried to keep small talk going from my end. That's not the easiest thing to do to someone who can barely only say yes or no. Even though I knew better I did ask her a question that I was really curious about. I asked her if she knew who I was. She didn't react. Then I asked her if I was her sister. She nodded yes. I wondered if she would nod yes to anything so then I asked her if I was her cousin. She nodded yes. I wasn't trying to trick her or anything but right then I knew that her mind didn't really know who I was at all. In the past if I had asked where her sister was she would point to me. This time she just seemed annoyed by my entire existence. It was devastating but I didn't allow my feelings to show. Her food came and she started eating. Not once did she acknowledge Grant. She didn't look at him and the only reason she even looked at me was because I was bugging her by talking. I then decided I needed to leave her alone for a second so I turned my attention to the other three ladies who were all loving on Grant. They had been talking to him the whole time and it made me happy that his presence was having a positive effect on those ladies. One by one they slowly finished their food and then Camila decided that she was done as well. She's not the cleanest eater. She was actually really messy so I grabbed a napkin and tried to clean her up. I was wiping her hands and just trying to be as sweet and helpful as I could be. She didn't like that. She grabbed the napkin from my hands and threw it across the table. She was grunting a little towards me and never did let off on her glare. She pushed the table to try and get passed me so I stood up to make some room for her so she wouldn't fall. I could tell her walking was worse than the last visit. I slowly followed her out of that eating room and into the foyer/lobby they had. This new room had one tv and one chair and while she was making her way towards that chair she kept looking back at me to see that I was still following her. I was and she didn't like that either. She sits down on that one chair and tries to watch whatever program was already playing. I kneel down next to her and asked her if I could stay a little bit longer and just be with her. She said no. I was hoping that she didn't really understand my question so then I worded my question differently and asked if she wanted me to leave. She said yes. She was being as clear as she could and I understood her. I think I even asked a third time but there was no point. She was angry and not happy with me. I wished her happy birthday again and told her I loved her. I then looked for a caretaker who could take me to the elevator to leave (the elevator only works with a worker's badge). Up until this point I was doing really well with my emotions. I really was. Yes I was sad but I didn't blame her. Not at all. That's not the Camila that I grew up with and it's far from her fault. She has a horrible trial she's dealing with and I 1000% know that if this disease wasn't in her life that we would still be very close. I found a caretaker who rode the elevator with me and while on the ride down she asked me who I was there to see. I told her Camila and that I was her sister. Her reply was "Oh I'm so sorry". That's when I broke. That's when I started crying. This visit did make me wonder if my thoughts of maybe there being a part of her that remembered me at the Christmas party was wrong and she actually was just making her way to the couch I was on because it looked more comfortable than the chair she had been on. I took Grant to the car and while still in the parking lot I called Pollyanna. She's the closest person who can understand just how sad this situation really is. Her relationship with Camila was just as special as the bond that I shared with her. We mourned the "loss" of our big sister which I know is very weird to say or write out because she's still here. Her body is still here. She has not passed away yet. But at the same time she's also not here. I can't fully explain it and only those who truly knew the before and after would get it. It's a drastic change. And it's only going to get worse. Soon she won't be walking at all and eventually the next thing to decline is her ability to swallow food. Right now she has to eat really small bites to prevent choking. Right now I need to look for the things that she can still do and be grateful for that. 

Instead of driving straight home I took Grant to the nearest fast food restaurant so that I could get him some food. It was also nice to have him with me and I turned our afternoon into a one on one date. Just me and my littlest guy. I needed some positives in my day and Grant provided that for me. It's funny because I took him with me thinking he would be that person for my sister but instead it was me who needed him most. He was so good for that whole visit. Usually toddlers can have a hard time sitting still and instead would rather explore around. Grant never did that. He sat on my lap the entire time and never whined to get down. It was like he knew exactly what he was doing and I'm especially thankful for him in that moment. 

We also didn't go straight home from there either. We headed to one of my best friends' house (Charisa) for a quick hello and then headed to the Bean Museum in Provo where I knew Danny would be with Addie and Hudson. The morning started off rough but ended with some good quality family time.

Like I said at the beginning of this post. One day she will remember me. Her body will be perfect. Her mind will be perfect. And she'll never have to live her nightmare again. Until then the only thing left to do is love. She might have forgotten me. But I won't forget her. 

Camila I love you and I hope you have a great birthday.

Camila and Eddie

Halloween - We all dressed up in Eddie's clothes and took Caide trick or treating.