11/9/2016

‘I used to be afraid of a lot of things and was never really in a mood to try new things. I didn’t know how much I could put myself through and still keep going…and that got old. So, I decided to start pushing myself. In school, I chose a degree in something I’m passionate about rather than something that would get me a lot of money – math and physics. For me, passion is actually more fulfilling than money is. So, I stepped out of my comfort zone and got into something intimidating because math and physics are really hard but I’m staying with it and I’m doing well. I’d say I found the nerve a few years ago when I was going to go on a mission. I realized to myself, though, that I really didn’t believe in it, so I went home and that was really tough. I felt like I was being judged. I was insecure and scared and I didn’t know what I was doing. At the same time, I could feel my life opening up to me. I started small with making little decisions to explore and, at the same time, kept good standards and morals.15032150_1359376877408102_4178868476607823059_n

For someone out there in the same boat, who’s trying to find the courage to take the next step…I would suggest to close your eyes and do it because that’s what I did…and to trust yourself. As long as you can believe and trust yourself, it will be OK. You won’t know unless and until you do it. If you don’t move in some direction to take the next step, there’s almost a certain death in not knowing. If it works out, great and if it doesn’t…at least you know and that’s OK, too,’

11/8/2016

6

‘I love to travel…I’ve been to Costa Rica and Thailand, so far. All my older siblings have taken humanitarian trips to Africa and Thailand, so I was able to join them there for a while. They build houses and playgrounds for the poor. My oldest sister went to Africa with Youth Linc and helped kids there. My brother also went to Africa and my other brother went to Thailand to do the same thing. I’ve always known that this is something I want to do. I just want to help people. I’m a very happy person and helping other people to be happy in whatever way I can to make a difference in their lives makes me even happier.’

11/7/2016

Part 4 of 4

‘The gofundme campaign we’re running is a saving grace for us. With Darby not being not been able to work for several months due to a seizure disorder, things have been difficult for us financially, plus the children’s medical needs are not cheap. A lot of things are not covered by our insurance. Darby and I only go out on a date once a year on our anniversary because it’s too expensive to find three babysitters. One sitter cannot watch all three kids at once because that’s unsafe and insane. So, we go out very rarely even though it would be nice to get a break every once in a while. The gofundme campaign has gone a long way to helping to take a little of the weight off our shoulders.

We’ve wondered why we were given our challenges and we sometimes wonder it again and again because there are new challenges that come up…challenges we haven’t figured out yet. Our religious beliefs come to us and confirm that Jackson, Ellie, Ivy, and Jonah were given to us…for us to give them the best and fullest life that we possibly could so that we can return, after this life, and be with them in eternity. We think of it as, ‘they came here to remind us of where we want to go and that we need to do what we’re supposed to do,’ and they give us the drive to do what we’re supposed to do.

We have wonderful church leaders who realize that not everyone comes from the same cookie cutter and that families are different, whether that be two parents or one, or children with special needs or not. Our leaders have been so helpful. When Jackson started in the Primary program, our bishop extended a calling to someone to be an aide to Jackson to help him through Primary and for the time when we’re in church but not together. Now, he’s in the Young Men’s program and the young men there have taken it upon themselves to make sure Jackson is OK…and they’ve done the same thing for Jonah. We’ve been accepted without regard for the trouble the kids cause sometimes. They realize that we’re doing the best we can and, even if it’s easy to be frustrated with something you might not understand, we know that we’re loved and accepted.

At the same time, in spite of the challenges, we wouldn’t change a thing. We might wonder, sometimes, why things are the way they are, but we wouldn’t change a thing. We love how perfect they are in spite of their medical challenges. We’re glad they chose to be with us and we’re proud of who they are…we worry about what their futures will be like when they’re older. We wonder how they will be treated and we’re scared for that but we’re grateful that we’re all together. We’re trying to teach them to embrace the fact that they’re different and that it’s OK to be different. We all have different strengths and weaknesses and, together, we can keep going. Our family diversity is our strength and it helps us to be less judgmental of other people and their weaknesses or strengths. Most of all, we’ve really tried to build on the fact that, whatever happens, we’re always going to be together and look out for each other.’

Dear Salt Lakers!

These are my new friends, Darby, Sarah, Jackson, Ivy, and Jonah. I was awed, amazed, and touched by their story as I hope you will be, too. If you would like to contribute to their gofundme account, their campaign can be found under the gofundme website by typing ‘Cuvelier Kids Medical Necessities.’ Please consider making a contribution to help this very special family. Every little bit helps!

7

11/7/2016

8

Part 3 of 4

‘When you talk about the autism spectrum, Jackson and Jonah are on totally separate sides. You can get a little eye-contact from Jackson but the more you’re with him, the less he’ll look in your eyes. Jonah, on the other hand, will seek out eye-contact. There’s just a huge range. It has been said that when you meet one autistic child, you’ve met one autistic child. No one definition covers everybody. Jackson’s big topic is Star Wars and Jonah’s is cats. They have a very focused understanding of one particular topic.

We are all beautiful people in one way or another. Jackson has an ability to forgive people that is unprecedented. He could be punched in the face and, in the same breath, he would forgive and never bring it up again. He’s not bent over it and has no bitterness. I try to draw on Jackson’s example to be as forgiving, every day, even though that might not be easy, and I find it amazing that my child can be my teacher. He might not understand the ups and downs and the guiles of the world, but he does understand that people are trying to do their best and he gives everyone the benefit of the doubt and, in that way, he’s beautiful.

Ellie was alive for almost a week. She lived an entire six days with a heart that was half missing and never pumped like it was supposed to. Somehow, she lived for six days and she was smiling and content. At the same time, she was a fighter. We were told, when she was born, that we might have her for a couple hours because her condition was so severe. But, she wanted to be with us as much as we wanted her to be with us. She fought for it as long as she could and she left on her own terms when she was good and ready and she taught us that family is everything. She gripped our fingers with such a strength and we knew she wasn’t going to leave until she saw everyone in her family and, when she did, she closed her eyes and was gone.

Ivy has an emotion, a zest, and a passion for life. She lives every moment to the fullest…whether it’s happy or not, she will fill herself up to her very core and she shares that with everyone. I’ve never seen that in anybody else. Jonah will get upset over something, even if it’s a very small thing…and in a moment or two later, he will apologize for it. As a lot of autistic children don’t feel or express a lot of empathy, he’s working on it so hard that I think, sometimes, he feels it too much. He puts himself in other people’s situations and he’ll go out and do something to benefit the whole family. The other day, he went out and raked the whole front yard and he wanted to do it for his family. Those kinds of unselfish acts, outside of their diagnoses, are what make them the most beautiful.’

11/7/2016

Part 2 of 4

‘We find our strength in each other, as husband and wife. We are a really good team. Where one of us struggles, the other has strengths and vice versa so, together, we are able to get the kids’ needs met. We are extremely involved in our church, the LDS church, and we have found a huge amount of support and comfort from people in our ward and outside. We have a lot of friends and family who have been very supportive. Our challenge has been to figure out that each child has to be raised extremely differently from the other. You can’t be one type of parent for all three kids…you have be three different types of parents at all times and in the same moment and that’s really difficult. One child needs one thing and another child needs something else and one rule does not always apply to everybody…so being able to find a balance to manage that has helped…and, of course, we’re always working on figuring that out together. As the kids get older, their needs change. Having a teenager is different from having a little kid, so, as his needs change, having to accommodate those needs is always tricky.

I’m inspired, day to day, by the small victories. When I had cancer, it was extremely difficult for everyone obviously, but, during that time, Darby became an even more amazing dad…not that he wasn’t an amazing dad before, but he really shined and got closer to the kids which was amazing. When we work so hard on something small, like, Jackson didn’t speak for a long time…he was in speech therapy and when he learned to say a few words, that was huge. Ivy struggles with a lot of anger issues and when she’s able to look past those things and love her brothers and can treat them with kindness, that’s a huge deal. Potty training was a huge victory. It seems like a small thing but we had all three of them in diapers for years and so, getting them trained was a huge triumph. Jonah gets attached to his cat and finds peace and comfort in that. He volunteered at an animal shelter because he loves cats so much and we thought that would help him with his anger management issues. He got really attached to this one little kitten who calmed him down and it was like a balm of peace. They’re beautiful together. We just never thought we’d have these kinds of challenges to deal with in our marriage…challenges that most people probably don’t have to worry about.’9

11/7/2016

10

Part 1 of 4

‘We have four children. Our oldest is Jackson. He’s fourteen and autistic and middle-functioning on the autism spectrum. We have a daughter, Ellie, who passed away twelve years ago from heart disease. She was born terminal. Three years after Ellie passed away, we adopted our beautiful daughter, Ivy. She is smart and funny and feisty. The day we brought her home from the hospital, we found out we were nine weeks pregnant with our fourth child, Jonah. He ended up coming a little bit early so he and Ivy are about seven months apart. Jonah is also autistic and higher-functioning on the spectrum. Ivy has ADHD and some bi-polar tendencies. She also struggles with anxiety from living with two boys with disabilities and other challenges we face.

It never occurred to us that we would end up with special-needs children. We were planning on having two children, so we had our son, Jackson. He was born extremely premature and weighed two pounds so he had a lot of special needs right from the beginning. Once he was stabilized, we decided to try for our second child. When Ellie was born with heart disease and passed away, that changed our dynamic to ‘we have two kids but we only have one with us now.’ But then, we adopted Ivy and we thought we were done and then, of course, Jonah ended up coming, so it seemed like we went from one child to four overnight. We just never expected to have special-needs children…and this life we’ve been given has been a much different life from what we thought we were planning.’

11/3/2016

‘My fifteen year old son recently hung himself from the top of an amplifier I gave him. I drink my whiskey when remembering him gets too hard. I’ve learned from it, though, that life is precious and short. I’d like the world to remember my son for his kindness and for the fact that he stood up to bullies. I think he hung himself because he was different. He was half Mexican and half white and, ironically, he was bullied, too. I want to tell the world that, when it comes to suicide, there’s always another option. If someone wants to kill themselves, for God’s sake, there are other options. You can get on a bus and go to San Francisco and become a hippie…you can do something else to change your life, whatever it is, and be happy. If you don’t like what’s going on in your life, you don’t have to live with it…or, at least, you don’t have to live with it forever. Change it, take control of it, and make it better. Suicide leaves a forever emptiness that answers to no one.’12