Grief

On November 2nd my dad sent me a message telling me that Camila was having difficulty breathing. He also informed me that she was put on comfort care. I had to ask him what this meant exactly. It basically means that at this point the head nurse recommended that they just try and make her as comfortable as possible by easing her pain but will not use any life saving measures should she need it. Her life was very much near the end and they knew it. It was hard as her sister to hear those news. A part of me felt like that was the route that Camila would want for herself at that point if given the choice but it still sucked. 

On November 4th my dad was able to have me and Pollyanna Facetime with Camila. Her oxygen was alright during that call and it was good to see her awake. That would be the last time I would see her awake.

That same night she took a turn and at 11:36pm I woke up to this text from my dad: "We just got a call from the care center. They feel that Camila is transitioning tonight. They have called hospice. I will let you know when we hear something more." I barely slept the rest of the night fully expecting a phone call or a text message informing she had passed. We had to get up early to support a friend's baptism in San Antonio the next morning and I was in two places the whole time. I tried to be present but I kept checking my phone for any updates but hadn't gotten any. After several hours I went outside and called my dad to get the update myself. He let me know that by that afternoon she still hadn't woken up and to expect a funeral by that weekend. I was stressed. Danny had a work conference in Indiana and wasn't even going to be in town that weekend. She did end up waking later that afternoon.

Over the next several days I got daily updates from both my parents telling me about Camila. Her breathing had actually improved but she was no longer able to swallow. That's always the last symptom that gets you with this disease. They would give her food and water but it would just sit in her mouth and she kept having to be suctioned out. During this week they did say that despite her pain she appeared to have some very calm moments which was nice because starving to death is a slow horrible way to go.

Danny debated whether or not he should go to the conference in Indiana and I told him he should go because I knew it would be very beneficial for our future. He was meeting with some people he's been talking to who were connecting him with some possible professor opportunities after this post doc is done and this conference was a huge deal. With that said though I knew it was going to happen while he was gone and he had a feeling as well. He flew to Indiana on the 10th and she passed the next day.

On Friday morning the care center told my dad that it would be a good idea for everyone to say their goodbyes as soon as possible. He called both Pollyanna and I as I was dropping Grant off at school. Camila looked peaceful and was sleeping. She still had a pulse and was breathing although it was very shallow. After a short time Pollyanna asked our dad if she was still breathing. He called a nurse in who came in to find a heartbeat and there wasn't one. It's hard to explain but that moment was really hard. I get that this is the best thing for her but it felt so final. I broke down. My dad had to hang up so that he could talk to the medical team there and I was left feeling crushed. Pollyanna got off the phone to let some of our other siblings know but I wasn't in the headspace to share any news with anyone except Danny. I sent him a message and then just held the twins. I felt so broken and I feel bad that I did. I kept thinking of people who lose their siblings with no warning at all and I felt like I should have been grateful knowing that Camila was better now and that I was able to say goodbye but it was still hard. It's still hard. It was just me in my kitchen with both Rylee and Quinn and those two couldn't have been sweeter. I think they were concerned because they couldn't keep their eyes off of me. They kept giving me hugs and kisses over and over and I think they were just trying to fix whatever was going on with me. My heart broke for them. Pollyanna and I were able to talk again later that night and it made me wish that I was physically in Utah with her and the rest of my siblings. Pollyanna pointed out how poetic it was that it was us two who got to 'be there' with her as her heart stopped beating for the last time. The three of us were inseparable growing up and she said it felt like Camila waited to pass until after we got to have our last moment. I really wish that was true. I really wish that Camila did in fact somehow know she was dying and wanted us to be able to say our last goodbyes before she did. It definitely would make me feel a lot better about this but sadly I'm not able to fully accept that.

That following week I tried to stay busy by helping my dad with getting Camila's photos organized, the obituary written and life sketch figured out. I convinced Pollyanna to speak at the funeral alongside myself and I'm glad she did it. It wouldn't have been the same without her.

Danny came home and took the rest of the week off and then I flew to Utah. The plane leaving from San Antonio was delayed and I was a freaking mess. I was barely going to land in time for my sister's viewing and I felt defeated at the thought that I would miss it. Luckily the plane finally took off and I landed an hour before the viewing started. My dad picked me up and then we picked up Caide. It's hard to be in the same space as Caide knowing he's now lost his last parent. I feel so bad for him and his siblings. This whole thing just isn't fair. It's not fair for him, my nieces and my other nephew. They shouldn't have to live this life without their parents while also wondering if the same thing that happened to their mom is going to happen to them. HDL2 should not exist.

The viewing was small and private. It was perfect for Camila's kids. They were able to use all that time to mourn her and be together without worrying about anyone else in the room. Seeing them with her casket was heartbreaking. I think that was one of the hardest parts of that week. I would be composed and then just the sight of them struggling would tear me apart. Camila looked beautiful. She has looked so different these last couple of years but that night she looked extremely peaceful.

The funeral was the next morning after a public viewing. Pollyanna and I were the first ones up speaking as we read her life sketch and shared our own memories of her. There was time set aside for any of our siblings to go up and share their own memories of her and it was really good to hear them share their thoughts. Cherish stood up with Caide and they said something about their mom. I got to see one of my brothers who I haven't seen in such a long time. It was really good to see him. I only had 48 hours in Utah and it wasn't long enough.

Grief has been so strange. I feel like I've lost my sister twice. It was almost three years ago when I realized she didn't remember who I was anymore and that was almost harder than her physical death which is saying something because this is hard. I'm surprised with how grief has impacted me. I thought I would be embracing how this is the best thing for her but instead I get stuck in these thoughts of anger. Angry that she even had it at all. Angry that her kids missed out on so many years of having a mother she always dreamed of being. Angry that my kids and husband didn't know her the way I knew her. Angry that I felt robbed of so many good years we could have still had if only I knew what was going on when her symptoms first showed. Angry that her whole life just seems so unfair and this disease is the most awful thing I could even imagine. You lose the ability to think, speak, walk and then swallow? How freaking unfair. She isn't understanding what's going on or where she is or who she is and the way to die is to choke or slowly starve? What kind of disease is this? That's where I'm stuck. 

I was riding in the car with dad after he picked me up from the airport and he was counting all the blessings he's seen at the end of her life and I told him how I wish I could be like him and think like that. Before she passed I did speak like that but now that she's gone it feels dark and final. Even though it's not. I know it's not. I do find peace in knowing she's finally free, I just want to figure out how to stay in that peace. I keep telling myself that the other alternative is that she keeps living but she hasn't really been living a life for a long time now and I wouldn't want that for her either. I think that's why I keep reverting to our younger days when things were good and this disease was never in our thoughts.

I go between being angry this disease exists, to being grateful that Camila isn't suffering anymore to just being sad when I think of her kids and what could be in store for them. I'm up most nights consumed with thoughts about them. This nightmare isn't over for them and that fact is where grief keeps taking me.

Grief is a lot. Camila I love you and I'm so sorry you had to go through this.