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.
It's been two years now. Losing a sister is rough. The thought that I'll one day get to say hello again to her in a perfect body and perfect mind, with no wheelchair, no memory loss, no limitations of any kind is everything. 💗 It's always the thought I hold onto when grief hits. Camile I'm so proud of your dash, I hope you can be proud of mine.
The Dash
"I read of a man who stood to speak at the funeral of a friend.
He referred to the dates on the tombstone from the beginning to the end.
He noted first came the date of the birth and spoke the following date with tears.
But he said what mattered most of all was the dash between the years.
For that dash represents all the time that they spent life on Earth.
And now only those who loved them know what that little line is worth.
For it matters not how much we own, the cars, the house, the cash.
What matters is how we live and love, and how we spend our dash.
So, think about this long and hard. Are there things you'd like to change?
For you never know how much time is left that can still be rearranged.
If we could just slow down enough to consider what's true and real,
and always try to understand the way other people feel.
Be less quick to anger, and show appreciation more,
and love the people in our lives like we've never loved before.
If we treat each other with respect and more often wear a smile,
remembering that this special dash might only last a little while.
So, when your eulogy is being read with your life's actions to rehash,
would you be proud of the things they say about how you spent your dash?"
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.
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.
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. 💙
We were able to spend eleven full packed fun days in Utah and it was everything we wanted and more. The boys and twins flew for the first time, we met four nephews, met my future sister in law, took advantage of all the cousin and grandparents time our kids could get, saw our favorite Santa, spent time with family and friends, saw some snow, ate food we've been missing in Texas, remembered how much we love seeing mountains, spent some time at my sister's headstone, did her temple work as well, and created new memories that hopefully the kids will take with them until we can see family again.
Day 1 ( Mon Dec 18th) - I thought I would be nervous for our first flight as a family but I was so excited. The kids were so excited as well. I couldn't have asked for a better flight, they all did fantastic. You would have guessed that they were frequent fliers with how well they did. On my row I had Rylee by the window, me in the middle and Quinn to my left. Directly behind me I had Hudson at the window, Addie in the middle and Grant to her left. Danny was given a seat a couple rows in front of all of us but he switched with a guy that was seated closer to us which was really nice. Not only was this the first flight for four of the kids but it was also the first flight that Danny and I have ever been on together (even though we didn't get to sit together). It's a fun milestone.
11 pieces of luggage for a family of 7. The big suitcase is empty except for coats and an empty duffle bag and will be used to bring back presents.
This girl is always reading. She reads anywhere and everywhere.
These girls had Mickey Mouse on and could care less about anything else.
We landed in Utah where Dave and Donna were waiting for us. They brought two cars which allowed us to borrow their vehicle for our stay there. Super generous of them. We were pretty hungry by that point and headed to the Crown Burger. We'd never eaten there before but just the sight of fry sauce again was so nice. We then hung out a little around Temple Square. We spent about an hour at the family history building and then walked around and saw some lights. It was a fun but cold night. We got to my parents house after 7pm and Hudson was able to open up his birthday present from Oma and Opa before we got everyone settled in their sleeping arrangements for the trip.
Rylee (spotted coat) Quinn (solid coat)
Day 2 (Tue Dec 19th) - Danny and I started our morning at the Jordan River Temple where I was able to get temple work done for Camila. It had been awhile since I have been able to find time to do a session so it was nice to do it again in her honor. Meanwhile the kids were able to decorate Christmas cookies and decorate a Christmas tree that we would use for our time there.
We then headed to see Grandma Great. We always love seeing her and being at her place. The kids felt right at home being back on her property. Grandma seems to be repeating herself a lot which is kind of sad. I hope she still has many more years to go before she returns to be with Grandpa Great. We love her so much and appreciate any time we get to have with her.
That night we saw almost all of Danny's family as we met up at the Riverwoods to see their Santa there. One of the only things Addie asked for us to do during this trip was to go see the Santa at Riverwoods. We saw everyone but Rand's family, Jaina, Jackson and Joey. We were able to meet baby Milo, Oliver and Tommy for the first time. When we left Jack was one and Max had just turned two. They both seemed so grownup to us. I'm sure that's how everyone else felt about Rylee and Quinn who were just 17 months old when we moved out of Utah.
We explored a little gift shop and Quinn and Jack found themselves a little reading area. It was pretty cute.
That night we also met my now future sister in law. Jacob had told me that morning that he would be proposing later that evening to his girlfriend. We got back just in time to put the kids in bed and wait for him and his now fiance Deb to come home. It was a quick visit but we couldn't be happier for him.
Day 3 (Wed Dec 20th) - We decorated Christmas cookies again but this time with Giovanna at her new house. We also met another new nephew, baby Liam. You would think the kids would be cookied out but they had so much fun making new ones. It was so good seeing Giovanna and her family again.
Morning pushups between Opa and Danny
Liam
We then spent some time in Mapleton where we were able to say hi to Margo again. She's looking good and seems to be doing well. Rylee and Quinn loved being outside despite the cold and did not want to go back inside.
Quinn
Rylee on the left, Quinn on the right.
I kid you not they posed on their own. I just took the pictures haha.
Rylee on the left, Quinn on the right.
We met up with Rand and Jayden and played some pickleball. It was my first time and it kind of showed. I got a little better near the end. Hudson LOVED playing. It was so fun watching Rand hit it back and forth to him. I wish I had gotten pictures of those two but I did get a couple of Quinn with her daddy.
We ended the night at Marie and Ty's new house in Spanish Fork. Their house is a dream. Mostly everyone showed up there for dinner and the kids were able to just play together which was great. Dave and Donna made Navajo Tacos for everyone which is one of my favorite meals. We knew it would be a long night and spent the night there.
Day 4 (Thur Dec 21st) - With us waking up in Utah county we had to start our day off with our favorite Kolaches place. They just don't make it this good in Texas. Even before we landed in Utah we had put this breakfast place on our vacation bucketlist.
We had the most downtime I believe on this day. We spent a couple hours at Marie's house before heading out to lunch at Burger's Supreme with Dave and Donna. We have always loved this place. We also went to the Bean Museum while in Provo. I honestly don't even remember what we did after that. I guess we headed back to South Jordan and relaxed?
Day 5 (Fri Dec 22nd) - This was a very fun long day. We spent the day at the zoo with my cousin Allen and his family. The kids had the best time. It's awesome because each of Allen's kids line up perfectly in age with my kids. Their kids are ages 9, 7, 5 and their youngest turned 3 the day before. My kids are currently 9, 7, 5 and will be 3 in two months. It was a great time.
Allen then treated us to lunch at The Pie Pizzeria. The kids thought it was so awesome that we were eating in a basement. They also loved that the walls had names written all over it. Hopefully they don't become inspired and create similar artwork in our own home. One of the employees handed some sharpies to the kids so that they could add their own names to the walls. I haven't been at the Pie since probably high school and that was with Allen as well. It was just as good as I remember. The kids all thought the size of the pizza was amazing. It was really nice of Allen to take us back there.
Since we were in downtown Salt Lake City I felt like we should stop by and see my mom. I felt the same way the first night we landed when we were walking around Temple Square but never brought it up. I was still having some mixed feelings about going after The Pie but Danny knew I would regret it and he drove us over there. I called my mom and told her we were literally two minutes away and asked if we could see her for a minute. I still needed to sort out all my feelings beforehand but it ended up being the best thing for us. She has only ever met two of the kids and it was back when Hudson was one years old so he and Addie didn't remember her. I'm really glad we did get a visit in. I even think it was a bit healing. I think I'm heading into being in a really good spot with our relationship and how it is and will be. It was good for me, good for my mom and good for the kids.
That night we ended the night feeling very happy as we relaxed on the couch with some popcorn and a Christmas movie.
Day 6 (Sat Dec 23rd) - I was able to spend the morning with some really good friends. I met up with one of my best friends Alyssa Rodriguez and my bonus mom Loraine Rowzee and also my good friend Whitney Lindsay who recently became a widow last month. It was awesome just having a moment to be with them. With Jacob getting married soon I hope to return and see them again. I then headed back and we left to get lunch. Danny and I got Cafe Rio while the kids ate McDonalds. We let them play in this play place for almost an hour. They probably felt like they were in heaven because we never do that. After lunch we took the kids to the cemetery for a quick visit to Camila's headstone. It was freezing cold so we unfortunately didn't stay too long.
Lamoni and Aide hosted a dinner at their place which was really fun. We met Sam's girlfriend and got to spend more time with Giovanna's family, Jacob, Moroni and Tiare, and Pollyanna's family.
Aide was amazing with every detail.
I wish we could get these three together all the time.
A little stair sledding before baths and bed.
Day 7 (Sun Dec 24th) - We got everybody ready and on time for church which is not something we always do. In fact we were the first ones there out of the whole Ferguson family. Jon and Halle had Milo's baby blessing in their ward that morning. It's also the same ward that Grandma Great attends so we were able to spend more time with her. We actually most of our day at her house after. We had Milo's luncheon and then everyone changed for family pictures with all the Fergusons. I'm curious how those will turn out because we had a couple crying kids (Addie and Quinn) who did not want to be out in the cold. Danny also forgot his pants at my parents home so he wore his church pants instead of the jeans we packed. There was one point where Donna and Jaina both assumed we were done with pictures so they left and weren't even in the best ones by the barn that we took. It should be interesting to get those back. I was already happy that we did our own family pictures just a couple weeks ago but now after that experience I'm extra happy about it. Eventually everyone went their separate ways to celebrate the rest of Christmas Eve. We were the last ones to leave but it was nice because we got extra one on one time with Grandma Great.
Once Grandma had to leave for a different family party we headed back to South Jordan where we were able to have a shepherds dinner with my parents, Ben, Jacob and Deb. In my entire marriage with Danny we have never done this before. We've always spent Christmas Eve with his family and then just on our own. This year was his first time doing the shepherd's dinner tradition that I grew up doing. The kids all did so well dressing up as shepherds. The kids all really became obsessed with their uncle Jacob and future aunt Deb. Whenever he was around they were glued to him and Deb. It was also cool seeing the kids interact with Ben. It makes me wish we lived closer so they can continue to build on these relationships.
Quinnie
Grant noticed the new gift from Felix and Santa
Rylee
We don't normally do this but we ended our Christmas Eve with ice cream. The kids were pretty impressed with Opa's selection and all the different options they were able to choose from. We then got into our Christmas jammies that Felix had somehow delivered under the tree while we were gone during the day. Once they were asleep in bed Danny and I were able to get things ready for the next morning. The nice thing about already having done our own Christmas before we left is that we only had to worry about one gift under the tree for each kid which was their Santa gift. My parents were super nice enough to prepare two stockings for our family. I'm really glad they did that, it was really nice of them. Another really nice thing was the note that Oma left from Santa for the kids to find in the morning. I appreciate the small details a lot.
Day 8 (Mon Dec 25th) - The kids woke up around 8am and we were able to start our Christmas day. My parents came downstairs to watch the kids open up the stockings, Santa gifts and the gifts that they had bought our family.
We headed to Mapleton around noon to be with Danny's side of the family. It had snowed a little the day before so the kids were able to finally see some snow. It wasn't a whole lot but it was enough. The kids were spoiled this Christmas by so many people. They got presents from Grandma, Grandpa, aunt Jill, aunt Marie and aunt Halle. We had to get an extra luggage to take everything home. We played the saran wrapped ball game as adults and then the kids played their own version. We had lasagna for lunch and then later for dinner Jill and Mike ordered Chinese food for everybody that was still there while we watched the Christmas Story. We got home really late but it was an awesome full Christmas day.
I'll never get tired of this view.
Our favorite gift was this homemade clock that Dave made for each of his kids. He then shared an awesome testimony about how life is all about time and not just what we do with it but who we share it with. He talked about how family is the most important thing and that we shouldn't take our time with family for granted. It was awesome to hear with share his heart with all of us.
Day 9 (Tue Dec 26th) - We spent most of this day in South Jordan before spending the night in Spanish Fork again. We had a relaxing morning and then Danny and I were able to sneak away for a lunch date while Jacob watched the kids for us. We had four places on our 'have to eat while in Utah' list that we really wanted to do. These places were Cafe Rio, Burgers Supreme, the Kolache's place and Zupas. We were able to have lunch at Zupas and check off all the boxes on our virtual food list. It was even better than I remember it. I love Zupas.
We got back in time to see more of my siblings who showed up to spend time with our parents for Christmas. Giovanna and Sophia came, along with Sam and his girlfriend, and Pollyanna and her family came. We spent all day just visiting and being together. After everyone left and we said our goodbyes we headed to Marie's house for the night again. We had told Addie that she and Georgia could have a sleepover at Jill's house but I didn't want to be too far away so we were close by in Spanish Fork. I'm still trying to form my own thoughts on sleepovers as I'm not really a fan of them but this situation turned out fine and she did well.
Day 10 (Wed Dec 27th) - We had chosen the night before for the girls to have a sleepover because we knew we would be in Utah County all day. It was Tommy's first birthday and they were throwing him a big party that afternoon. While the rest of us were at Marie's house Georgia and Addie were able to have a brunch outing which they both said was a lot of fun. We were able to reunite later at the party where they had a hard time saying goodbye later that night. Before the party though we took the four other kids to Rand's house where the kids were able to play cars with Jayden while Danny and I were able to catch up with Rand and Ashley. It was nice. While at the party the kids all had a blast. It was the last time we would see most of them.
Any time we got in the car these two would pass out. They were so tired with our constant on the go no nap schedules and they were such good sports through it all.
Oliver
Tommy
Quinn
Milo
Rylee on the left, Quinn on the right
Day 11 (Thur Dec 28th) - We were able to have everything packed up and ready to go. We said goodbye to my parents before they left for the temple. My other best friend Charisa stopped by to say a quick hello and goodbye. We had tried all week to see each other but she was dealing with some really sick kids. It was good to see her and meet her newest little babe.
We came with 11 pieces of luggage and came home with 13.
Dave and Donna showed up and we were able to load up all the vehicles. Then Jill called and of course Addie had left behind her new Christmas pajamas from her stay the day before so they were coming down to bring those. We're still not convinced that the girls didn't plan this for an additional get together to happen haha. We all had lunch together and then headed downtown. We had talked about going to the Natural History Museum but we then changed our plans and opted for the Clark Planitarian since it's free. We didn't have to be at the airport until later so we were able to spend all afternoon with Grandma, Grandpa, Jill and Georgia.
Once the time came we said our goodbyes again and headed to the airport. The kids were just as excited as the first time to be getting on the plane. We had a similar setup as the first time flying in but switched who would sit by the window. This time it was Quinn at the window, me in the middle and Rylee to my left. Danny was across the aisle on the outside seat. Behind me was Grant at the window, Addie in the middle and Hudson in the aisle. Since Addie had flown before she agreed to be in the middle on this Utah trip to help out her brothers, be on snack duty, and give them each a chance to be by a window. It was really nice to have her help out on both flights. Once again the kids did awesome on the flight. Grant apparently was watching something funny because every once in awhile he would just burst out in uncontrollable laughter. It's a lot better than crying. It was also adorable. I thought at least some of the kids would fall asleep because it was a late flight but they all hung in there with high spirits.
Quinn
Rylee
We landed around 11pm and found that our van wouldn't start. We believe one of the lights must have been left on. It was a minor inconvenience especially with the timing but we eventually got it all squared away and the van running again. While we were waiting for the van to get jumped I got the twins in pajamas and they fell asleep right away. It took us a few days to recuperate from this vacation but even days later I'm full of gratitude that we were able to make this trip happen. It was full and amazing.
