FaceTime with Caide

I was able to FaceTime Caide and his caregiver Olivia today. It was what my soul needed. I was able to talk one on one with Olivia as well for a moment and I asked her a question I've always wondered about regarding the disease that Caide and my sister had. I asked if Caide was aware he has the disease. She thought about it for a minute and then told me that she really doesn't believe that he knows he has it or what he's about to go through because of HDL2. That brings me some relief because I've always feared that my sister was scared of the changes her body and mind were going through. She did tell me that she remembers Camila always being scared for her kids, especially Caide. She told me that she would always bring her pictures of her kids and try to talk about them. It's surreal that Caide used to be someone she knew from pictures to now someone she works with six days out of the week. Olivia says that Caide is very loved and very spoiled. Maybe it's because he's the youngest patient they have but she mentioned several times how much the staff all love him. Caide is very attached to Olivia in particular and just follows her around, wanting to help in any and every way he can. He seems to be doing well but she did say that he is deteriorating very quickly. He's losing a lot of muscle and weight. He needs help with everything. She helps him put on his clothes, shower, cut up his food and open all the things for him. I remember right after my sister's viewing I took him to Chick'Fil'A where I had to help him open up the sauce packet because he couldn't do it back then. That's when I knew he had the disease as well. He mostly just says one letter sentences. During our conversation today he really only said yes and no but he did once say 'horse', 'cute' and 'cool' and at the end when we were about to hang up he told me "love you". Olivia encouraged him to say more words in that sentence so then he said "I love you." It was a special moment. I love this kid so much. I'm glad I was able to have this virtual visit and that my kids also joined in and they were showing each other stuffed animals that they love. Caide showed my kids his babies, tiger, bracelets, puppies and sloth and my kids showed him their babies, stuffed elephant, unicorns, puppies and lego cars.

Caide I love you bud. I'm so sorry you have this awful disease. I love that you have someone like Olivia to be there by your side through this. I wish it could be me. Maybe one day I'll live close enough to regularly visit you before your time here is done. In the meantime I promise to call and FaceTime more now that we have each other's contact information. Love you.. . . I love you.

Long Distance Bonds

I just feel the need to document this. I won't go into details but being able to talk with my brother for a full hour was so good for my soul. I wish I lived closer to my siblings but being able to still have these bonds to lean on is everything.

Another Birthday in Heaven

 Happy Heavenly Birthday C!

Does heaven celebrate birthdays? 

Or would they rather celebrate the day they got to heaven? 

I hope they celebrate both.

Happy Birthday Caide

Happy birthday Caide. I've been thinking a lot about him lately. Maybe it's because it's his mom's death anniversary tomorrow, maybe it's because he has the same disease she did, and maybe it's because I'm bombarded with so much guilt regarding him lately that when my mind goes quiet it always leads back to him. I feel bad that I didn't do more to spend as much time as I could have with him while in Utah. And now I'm in North Dakota so far away while he's in a care center all alone. I feel so much guilt. Just knowing that both of his parents have died should have been enough for me to do more than I did for him and his siblings. A couple of days ago my dad sent out a family group text message saying that he's loving the care center he is at and is doing well. He even has an amazing nurse named Olivia who apparently also worked with Camila. That connection brings me a little bit of joy and I would love to just sit down and talk with her. My dad told me that he even calls her Mom which is cute. I'm not sure where Caide is at mentally because he already isn't able to talk very much. A lot of his words are gone and he's starting to get a bit wobbly as well. It feels like it was just yesterday when he received his official positive results, yet I've felt it in my gut since my time with him at my sister's funeral. Sadly his symptoms are progressing so much faster than they did for his mom and I'm really nervous for him. Today I just wish him all the peace in the world as he turns another year older. Again, happy birthday Caide. I love you more than I could ever express.

Pictures from my dad. The first is of Caide and Olivia.

Pictures sent to me from Moroni.

Rose

I was listening to a podcast while washing the dishes after dinner tonight when I got a video call from my biological mom Rose. We've never talked on video before and I freaked out when I realized that instead of muting the call I had actually answered it. I was instantly and extremely nervous. I took the call to the basement where we had a conversation that actually went better than I thought. I was nervous but a lot of that anxiety went away as we got into a groove of talking. She informed me that Anderson is now a father to identical twin girls which is awesome. They were in the hospital but were doing great. I know everyone says that technically identical twins don't run in your family but how crazy that my biological mom is an identical twin girl and two of her three biological kids also had identical twin girls. Rose's third child Deise says she'll never have kids because she's scared of being three out of three to have twin girls. I believe it's a crazy coincidence but it's still pretty cool. I faced a fear I wasn't even aware I had when I had to accept that call and it turned out just fine. Hopefully next time I'm a little better prepared though. 😅

Missing and Found

Last night was quite stressful. I got a text message from my sister Pollyanna informing me that our brother Ben was missing. Apparently he left work during his break and didn't return which is not like him at all. He left and went to his biological mom's gravesite and send a message to my dad with a video of her headstone and the message "Thanks for being my dad goodbye." It's a miracle that my dad replied back because he's terrible at texting back right away. Luckily he saw the message though and replied with "Thanks for being my son! You are an inspiration to me! Is this headstone your biological mother?". His reply was "Yes I'm joining her soon." After that my dad tried both texting him back as well as calling him but there was no answer. With worry he contacted Pollyanna and asked her to check out the gravesite to see if she could find him. My parents are still serving their mission in New York and my dad was trying to navigate all this from afar. Thankfully Pollyanna went and found his cellphone on the ground by the headstone but no Ben around. From that point more of my siblings got involved with the search for him. They went to his work and checked out the surveillance videos which showed Ben leaving. They searched and searched but didn't come up with any more clues. The police had a missing person's search going on for him that included searching all the hotels and hospitals in the surrounding area. This was the point that Pollyanna reached out to me. I felt so sick inside with the news. It sucked being so far away from family and wishing that I could be there to help in the search. I looked through my phone to see if there were any pictures that showed his face well and came across one that we took together when I was in Utah for Camila's funeral. I cropped my face out of it and sent it to my dad who then forwarded it to the police searching for him. Even though I couldn't be there it felt nice to be of help even if it was just a little. We all went to bed last night believing that he had done something to himself and that he was now with Camila in heaven as well as his biological mom. It was a long and sad night. I just kept picturing Camila welcoming him and giving him a giant hug. They're exactly 14 months apart and were so close growing up. I hoped he was alive but honestly felt like he wasn't anymore.

This morning just before 9am I reached out to my dad and asked if there were any updates. Thankfully there was. He had just gotten off the phone with Ben who was alive and well. I guess not exactly well but he was alive. Turns out he did intend to end his life. He tried by overdosing but didn't succeed. He woke up this morning and decided to head home which is where his landlord saw him and had him call our dad on the landlord's phone since Ben didn't have his. He's so lucky that Pollyanna was the one who found his phone. I guess the police even searched the hotel that he checked into and Ben could hear their voices calling for him. I don't understand exactly what happened to lead Ben to this decision but apparently he's been pretty paranoid the last couple of weeks and something happened to really spook him. He felt like someone was after him so hearing voices call out for him probably only made this scenario for him scarier. I'm so thankful that whatever Ben tried didn't work and that we still have him around today. He might have a long road of emotional healing ahead of him but he's agreed to get some mental help and I hope he's able to find some peace through all this. Ben I love you and pray that you don't feel alone. You are cared for probably more than you realize.

Here's the original picture of us two plus two old ones that I just pulled from his old Facebook profile.

Caide 💙

I found out today that Caide officially tested positive and will be in the same care center his mom was in. I hate to say it but this news actually was a huge relief to me. I suspected already that he had HDL2 on the night of Camila's viewing. I knew it in my gut so I'm not too shocked. The truth is that I have been terrified that he'd end up homeless on the streets never testing and ultimately passing with no one knowing who this kid was. I honestly was scared that we'd go through life not knowing what happened to him because he's so hard to get a hold of. When I was in Utah for both Christmas and Jacob's wedding I would search the homeless people on the streets of downtown Salt Lake City almost hoping to see a familiar face because I just needed to know he was alive and okay. I guess he found help himself. He admitted himself into a hospital after trying to hurt himself and from there he was able to get some help and get tested. Knowing that he will be cared for by the same people who cared for his mom is comforting. I just wish that I could be close by and visit him while I might still be recognizable to him. Caide I love you and I'm so sorry for how life turned out. None of the trauma you have endured is fair. Please know you are so loved. So so loved. 💙

James DeVore

My brother in law James passed away this week on the morning of March 24th after a battle with liver cancer and kidney disease. He was the king of dad jokes and will be missed. He leaves behind my sister Melanie and their six boys (James, Thomas, Henry, Edward, Charlie and Timothy). Melanie has been on my mind all week as we knew his time was coming close to an end. I also keep thinking of the fact that I now have three sisters who have experienced being a widow. My heart is heavy for all of them, especially Melanie at this time.

Rare Disease Day 2023

For Rare Disease Day I shared some new thoughts and pictures to my social media platforms. Of course I'm posting them here in my journal as well. Camila I love you and miss you.

 

In case the words are too small.

Picture 2: 

3 months ago my sister died from complications of HDL2 (Huntington Disease Like 2)

- HDL2 is most closely similar to juvenile Huntington Disease but it cannot clinically be diagnosed as it because the mutated genes are different between HD and HDL2.

- It's almost as if they don't know what to call it. If you google HDL2 the first thing that pops up are tires. They call it a look alike disease because the symptoms are so similar.

Picture 3: 

It can be described as having Alzheimers, ALS and Parkinson's disease all at the same time. One big difference is that usually those with HD don't get symptoms until you're in your later adult years (anywhere between 45-60s). This starts in your 20s (Not in your 30s like I have said in the past).

Picture 4:

Camila getting her diagnosis was a miracle in itself. My parents were living in Europe when Camila's bio aunt found their information and reached out asking about her. My dad told her how she wasn't doing well, losing all her abilities and no one knew how or why. Turns out Camila's mom passed at 25 from the same disease and her grandmother also at the same age and symptoms.

Until then their doctor in Brazil just called it a mystery disease. Those emails led to genetic testing for HD and were surprised when it was negative for that. After further testing they found the right chromosome that was mutated and came to HDL2.

Camila getting her diagnosis gave us some answers and also gave her bio family answers to questions they've had for several generations. After Camila passed I learned that no one in her bio family line who had it lived past 27. Camila died at 39.

Picture 5:

In this picture she could still say a few words like yes, no, baby and kids. She could still walk, just not very well. She could still eat (small soft bites).

My favorite thing is that she still knew who I was. She would point to me and try to say sister.

Two months later she didn't know who I was anymore. And then Covid hit.

Picture 6:

When the world shut down so did visits to her care center. I didn't see her again until June of 2020 when they made an exception for our family to see her. They called us and told us to say goodbye, that she wouldn't live through the weekend. In the 6 months since seeing her she was now wheelchair bound, couldn't talk at all, and could barely hold up her head. She ended up pulling through and lived for another two years.

Picture 7: (A quote I found and loved)

It's easy to look back and question decisions you have made in the past, but it's unfair to punish yourself for them. You can't blame yourself for not knowing back then what you know now, and the truth is you made each decision for a reason based on how you were feeling at the time. As we grow up, we learn and we evolve. Maybe the person you are now would have done things differently back then, or maybe you are the person you are now because of the decisions you made back then. Trust your journey; it's all going to make sense soon.

Picture 8:

I think about the time when I was 22 and I invited my friends to come camping with my family. Every Labor Day weekend my parents would rent some cabins and this year I was excited to bring along Megan and Britney. We stayed up late playing Wearwolf and I remember getting so annoyed at Camila for keeping her eyes open the whole game even when she wasn't the wearwolf. It's such a stupid thing now when I think about it and I remember also feeling a little embarrassed that she wasn't playing right. I was seriously so dumb. The truth is that it had nothing to do with me. She literally could not grasp the concept of the game and it makes me wonder how many other times there were for her where she was in a setting with no clue what was happening. Thinking now makes me feel sick to my stomach of how much of a miracle it was that she even drove there in the first place.

Picture 9:

Which then takes my mind to wondering what it must have been like for her to drive to any place. Near or far. How many times was her mind in a fog trying to remember where she was going? I'll never know. Were those drives quiet? I try to picture how my own kids act in the car when we are going places. Was she ever frustrated by her kids possibly asking her how much longer or where are they going?

My parents used to rent out a skating rink every January and we did this every year for a long time and yet Camila would act like she had no idea where the rink was. I remember being on the phone trying to explain how to get there but she was so lost that by the time she got there it was pretty much over. She didn't even live far from it.

How were her kids in the car during that drive? These are some things I think about at night. Was she calm and quiet or was she loud and frustrated as I probably would be? I think about the version of her that I grew up with and feel sad that her kids didn't get the version that I did. Why did I never try to get to the root of why she was slowly changing until it was too late to do it? I wish I could go back knowing what I know now. I have so many questions that I would ask.

Picture 10:

I wonder why she never said anything to any of us about what she was going through. I keep coming back to two options. Either she could tell she was slowly losing her mind and maybe that terrified her to think she was going crazy and didn't want to admit anything out loud for fear of judgement or people not believing her at all. Or maybe she was naive to it and didn't realize that she was forgetting things or that life was changing. Both scenarios make me sad. I worry that she lived feeling so scared for herself. Maybe a part of me would rather the second option where she didn't know what was happening but I know deep down it's also because that would explain why she never talked to me about what was going on. Because she never did. Not once.

Picture 11:

November 2021. A year before she did. Her hands were stuck in that position. Her neck was stiff. Her body would sometimes twitch. This is the ALS and Parkinson's part of her disease. Add in dementia and this disease is one of hell.

Picture 12:

My dad might be a literal angel. I'm forever thankful for all the FaceTime calls he would do so that I could still 'visit' her after I moved.

Picture 13:

I feel like that was a lot shared and maybe it was all over the place. HDL2 is awful. Camila was the best big sister. She was funny, positive, inclusive, and I was blessed to even know her.