I have written often about the struggles that come with being a grieving mother. The loss of my daughter can be all consuming, especially during this busy season that has included the anniversary of her passing, the holidays, and eventually yet another birthday where Olivia is missing.
But what I don’t talk about as often is the incredible toll the loss of Olivia has taken on her brothers. Their experiences are vastly different, and yet they both struggle with the loss of their sister in their own unique way.
My oldest son, Wyatt, was Olivia’s twin brother. He knew his sister more intimately than any of us did because of that bond that started very literally while they grew together in my womb. And because of that (and the tremendous loss he suffered when she died at their young age of 20 months) he struggles a lot to this day with living a happy life in spite of missing his other half.
My younger son, Landon, on the other hand, was born about a year after Olivia died, so he never got to meet his big sister. Despite being the spitting image of his sissy, he feels like he got robbed of ever knowing her, and that breaks his heart. He has a lot of questions about what she was like and talks often about how sad he is that he has only ever seen pictures of her.
Their grief is different and yet both are completely valid and very real. They both suffered a huge loss and they will both have to navigate through life with the undercurrents of that grief shaping how they live.
I hope as their mother that I am teaching my boys how to live a joyful life in spite of the tremendous loss we all suffered. I tell my boys often that it is possible to miss their sister terribly and still live a really happy life. I also remind them that Olivia would want them to live happily and to honor her in the way they love one another.
It is equally important to me that my boys know it is okay to be sad and to miss their sister. There is no shame in the days when the tears won’t stay away and their little hearts ache for Olivia. My husband and I spend time helping the boys to know how to grieve in a way that won’t be harmful to them in the long run. We tell them to let the tears fall, talk about what’s on their mind, and then do something to help their heart feel better. That could be spending time with their family, taking a hot bath, seeking out a friend, or just getting a big hug from their dad or I.
I think that’s good advice for all of us and something that I practice in my own walk with grieving my daughter. I used to spend so much time bottling up my own feelings because I was afraid I wouldn’t be able to get back up if I ever let it take me over. But now when I feel the grief coming, I embrace it. I let my tears fall. I hole up for a while when I need to. And then I do something to pull myself out of it.
What have you done to help yourself or your children grapple with a big loss in your family? Please feel free to share any tips or tricks you have learned in the comment section or send them to me via email - email@example.com.
November is here and many of us are already starting to think about the holidays - will there be travel involved this Thanksgiving? How many do we need to cook for? How will we afford it this year? Will we even be home to celebrate?
There are so many questions we might be asking ourselves already depending on our circumstances. So I’d like to share a little bit about the art and science of gratitude, since that’s what the first Thanksgiving was all about!
Why art and science?
Some may say that gratitude is more of a mindfulness tactic or a religious affair and it really has nothing to do with science. And some on the other end of the spectrum have argued that it must be science because the act of gratitude can be traced through the brain and its effects seen throughout the body. Well, I’m no scientist and hold tightly to my Christian faith, so in my humble opinion I think we can have the best of both worlds however you choose to look at it and all sit at the table together this Thanksgiving (and beyond)!
Gratitude - the Art
Gratefulness or gratitude is something done within relationships. We can be grateful for an act of kindness someone did for us and that thankful feeling is directed towards the kind person. Oftentimes this is reciprocated with an act with the feeling like saying, “Thank you!”, writing a note, making a social media post, giving a hug, however that feeling moves you to express your gratitude toward the other person. Depending on your gauge of spirituality, this can also easily transfer over to God or your higher power. Sometimes people are overwhelmed with a sense of gratitude for a beautiful day or a closer parking spot or a feeling of comfort given in the midst of trial. However this looks, we’re going to try to find ways to take the art to a level that also affects our physical well-being!
Gratitude - the Science
Here’s something for a little self-reflection:
“People generally do not make efforts to actively infuse their daily experiences with greater emotional quality….Although most people definitively claim that they love, care, appreciate, it might shock many to realize the large degree to which they are actually experienced in their feeling world. In the absence of conscious efforts to engage, build, and sustain positive perceptions and emotions, we all too automatically fall prey to feelings such as irritation, anxiety, worry, frustration, self-doubt and blame.” (Rollin McCraty, “The Grateful Heart,” The Psychology of Gratitude, 2004)
Science has proven that people who tend to be grateful experience fewer aches and pains, improves sleep, reduces stress, and in general causes a “healthier” life. Mental health is stronger with greater ability to overcome traumas. There are more opportunities for friendships and overall better self esteem - doesn’t this sound pretty awesome? (For a quick taste of what this could look like and the studies, check out this link.) I’m feeling grateful just thinking about all of the benefits that come from being grateful!
When things are difficult, it can be hard to find those things to be grateful for - those people to be grateful to. So what can we do to help relieve some of the holiday stress and tap into these benefits? Here are a few easy steps to add to your daily life:
Parenting is wonderful and exhausting all at the same time - which is a statement any parent would agree with. Between the hustle and bustle of school, sports, homework, and trying to stay on top of the never ending piles of laundry, parenting is a daily marathon that is sure to test your patience, while also stretching your heart to new limits of love.
Having a child with a complex medical condition only makes that parenting marathon more difficult. You have all of the normal stressors of parenthood, while also adding on your child’s special needs that require even more careful management. This medical super marathon of parenting is something I have experienced with two of my own children, and it is anything but easy!
When my daughter Olivia was 4 months old she was diagnosed with brain cancer. Her journey required a lot of special care, including learning how to access her mediport and give her IV fluids at home when needed. I also had to give her liquid feeds via her feeding tube, keep track of a whole slew of medications, give her steroid injections, balance doctors appointments with a whole host of therapists to help her developmental skills, and more. Caring for her was a full time job and one I would do all over again in a heartbeat!
The day after Olivia’s funeral her twin brother, Wyatt, was diagnosed with Type 1 Diabetes. His own diagnosis has presented a new medical super marathon all its own! For him I’ve learned the delicate (but time consuming) balance of making sure he never runs out of his medications or supplies. I have to make sure I don’t order too soon for insurance to cover the cost but also not order too late that he runs out of supplies. I’m also constantly changing his insulin levels on his pump, keeping track of when his last pod was inserted or when his CGM sensor will need to be changed. There’s also doctors appointments to keep track of and constant communication with anyone else who takes care of him to make sure his needs are met and his diabetes is cared for properly even when we aren’t in the same place. Thank God for technology to help with our communication, including a CGM that sends information about his glucose levels to my cell phone.
These experiences with my children have taught me a lot about advocating for my children while trying to maintain my own sanity. Here are a few tips I would love to share:
I hope this advice will help you in some way if you are navigating through life with a child who has a chronic or complex medical condition! If you have any other tips you would like to share, please reach out! We would love to hear from you. You can email me directly at firstname.lastname@example.org.
I'm not here to talk about everyone’s obsession of pumpkin spice lattes and the early (dare I say too early) introduction of Christmas decorations in October. No, today we’re going to talk about how the change of seasons can bring a feeling of hope but only if you let it.
It's in our nature to be resistant of change. Though we might enjoy each season for its individuality, and though we might appreciate a change once it's taken place, there's an anxiety that comes with that build up to the actual change. Knowing change is coming tends to spark a bit of nervous energy within us, making us feel like we need to prepare ourselves or brace for impact.
And even though summer seems like a distant memory at this point, we still have lots of changes to come as winter nears. So while we might be excited about things like sweater weather and Halloween parties, we can't help but hesitate to embrace the new season.
So how can we learn to let go of the fear and anxiety around change in order to embrace the new season and become hopeful for all it can provide?
Have you stopped and taken the time to truly soak in the beauty of nature during this time of year? The changing leaves with brilliant pops of yellow, orange and red. Seeing the glistening snow on top of the mountains. The massive swarms of birds flying across the sky during their migration. If we take time every day to stop and appreciate the natural beauty of this season we will form a gratitude for all this season has to offer. One of my favorite things to do is to look out my window in the morning and see the beautiful sunrise colored sky with the snow-capped mountains in the background- it’s stunning and immediately places my mindset in a gratitude state.
The arrival of winter no doubt will bring lots of snow making travel difficult and potentially impossible. We have had plenty of snow days for the kiddos which definitely throws a wrench in our plans. But instead of letting the anxiety of all the difficulties snow can bring- that’s totally out of our control so wasting our energy worrying about it doesn’t serve us- instead, can we think about all the benefits the snow provides us? Sledding, cross country skiing, downhill skiing & snowboarding, snowshoeing, moisture for spring, the list goes on.
If you feel your anxiety start to rise when you think about the stress of the holidays, my advice is to stop in that moment and look at the holidays for all the good they provide. Going back to a gratitude mindset is going to help us shift from fear & anxiety to a place of peace and gratefulness. You can go from “how are we going to afford Christmas gifts this year?” to “I’m so thankful we have the ability to spend time as a family and make memories together at Christmas”.
The next time you feel yourself wanting to resist change, try these mindset tricks so you can find yourself in a place of gratitude. I can almost guarantee if you can do this, you’ll be amazed at how much you look forward to the change of the seasons.
Not diagnosis specific? You got it.
Works with other groups? With joy!
These are some of the most common questions we get about the Patient Advocacy Program. And they make sense. For this blog, I wanted to give some real life examples of how it all works together for Wyoming families who need support in various ways while they care for a child born prematurely, with a chronic illness or medically complex condition.
I received an email from a nurse case manager at a hospital in Denver. A family was preparing to discharge with their child, but couldn’t until they found a nurse on duty to help care for their child’s medical needs. In Wyoming, this can be a very challenging hurdle to overcome. The nurse case manager and I shared ideas of who to try and after many calls and emails, we were finally able to connect them to the Department of Health who were determined to make it work. The family was able to discharge back to Wyoming knowing that they had the medical support they would need for their precious child.
A dad emailed me in need of help with rent and groceries because they had the added expense of traveling out of state for several days of medical appointments for his child. The gas, doctor bills, and missed work days left them short when it came to other needs in the budget, but missing the appointments was not an option! We worked on several options not only for the upcoming month’s rent, but knowing this was going to be an ongoing struggle, we worked on options for the future that would always involve these appointments. We found several local food pantries that could help supplement the grocery bill. To help with rent, he applied for the Emergency Rental Assistance Program. We reconnected with the Department of Health program called Children’s Special Health to make sure he understood how they could help with some of the medical costs, care coordination and more.
A school nurse called me on behalf of a mother who was hit hard 2 days before with a difficult diagnosis for her child. I was able to connect with mom and be a listening ear as she processed her grief over the news. When she was ready, I was able to connect her to a disease-specific organization to help walk her through the days, months and possibly years ahead with almost everything they would need.
A social worker at a hospital in Denver called to see if there were any CNA course options for a mom who wanted to be able to care for her child at home herself when they got to come home. I was able to send several options along with possible scholarships and tuition cuts so that she could make her decision.
For several months, I was in contact with a mom walking through very complex medical conditions in one of her children, along with needing help with her older kids that needed some care, as well. We found counseling options, because it is HARD to manage everything in life on our own, travel expense assistance, grocery assistance, therapy support and connections to other families that have children with disabilities to be able to have that understanding and knowledge all through a local program that could help her wade through the State waiver program. We even found a wagon that accommodates her child’s specific needs. There is nothing too big or too small when it comes to caring for the whole family.
I’ve helped find diapers, toiletries and clothes for families when they were emergency life flighted out of state, medical contacts for eye care, childcare, the list goes on! If you have any questions about what the Patient Advocacy Program is and if it could be a help for your family - please feel free to call me at (307) 333-1273 or email me at email@example.com. I’d be happy to hear your story and work with you to connect you to the resources that can help your family during your medical journey.
Fall is a busy time of year with back to school, new sports starting up and the fast approaching holidays. With so much on our schedules it’s easy to forget that this is the start of the season for giving back.
Instead of waiting until Thanksgiving or Christmas to do your one day of volunteering/giving back, consider starting sooner. Not only will you feel good about doing something important for your community or favorite charity but you can involve your family and friends which develops a deeper relationship in the process.
In a world that seems a little out of whack right now, one thing that can keep us all grounded is to do something (small or big) to give back and teach empathy to our kids.
Here are a couple ideas to start your own fundraiser this fall to support your favorite charity:
Host a Chili cookoff
Remember to get as creative as you want and recruit your friends, family and social network to help you so you don’t get so overwhelmed. Also, it’s a good idea to check in with the organization you plan to fundraise for to see if they can help you plan and if they have logos, marketing materials and fundraising software for you to use.
Happy Giving Back season!
In talking with parents of kids who have a chronic illness or medically complex condition or even a premature birth, I have yet to hear the words, “Oh, yeah, we totally expected this.” No matter where we are in life, there’s always that bit of shock that “this is happening to me.” Whether you have worked hard your whole life or not, when drastic changes come that we didn’t expect it is a hard pill to swallow.
In general we here in Wyoming pride ourselves on our independence and ability to take care of our own. When that diagnosis comes or you suddenly find yourself on a life flight out of state, we still want to be able to take care of everything that our child needs. And sometimes we simply can’t. So then what? We may have to use that four letter word - HELP.
Before I jump into a few ways to find help covering some of the bills that are adding up in your times of distress, let me first say that asking for help when in need is a sign of strength. A friend of mine and partner at the Orr’s Hope Foundation - Shannon Orr - uses the phrase “a hand up, not a hand out” and I think she’s really onto something. If you are struggling under financial burdens, a hand up is what you need. So I applaud you from the beginning of this blog for considering asking for help to get a hand up to keep moving forward. For your kid(s). For you.
Check and Re-check with Your Insurance - have your provider or a social worker help you get all of the information you need about your child’s medical history and needs to be ready to take on the daunting task of calling your insurance company. And don’t quit calling. Some nurses or social workers can even help make those calls to advocate on your behalf. It doesn’t mean they will always be able to cover everything you need, but you may find some things that, with a little persistence, open up for you. And every little bit helps.
What if you don’t have insurance? These same social workers can help you navigate through the Marketplace to find something suitable for your family, including CHIP if there is a need to have your child covered for some things before you’re able to get back on insurance. There is also Medicaid that your child might be approved to receive. There are options! Don’t give up!
Problem Solve with Your Provider - is there similar medication for a fraction of the price? Have you heard about the medication assistance programs like NeedyMeds that can offer discounts on certain medications? Oftentimes, we need to travel for our child’s care. Does your out of state provider partner with any outreach clinics, like the one we have here at the Olivia Caldwell Foundation with Children’s Hospital Colorado? If possible, maybe these outreach clinics can help with doctor visit costs simply by having to travel a shorter distance and miss less work.
Wyoming-solid Foundations and Organizations - there are so many wonderful foundations, organizations, state programs, churches and individuals who are willing to offer a hand up to support you while you care for your child. Not sure what’s in your area? Not sure what you would qualify for? Not even sure how if you found both of those answers how to apply or connect to that entity? I’m here to help.
The Patient Advocacy Program is all about connecting families with a child who has a chronic illness or medically complex condition to the supports that are all across our state! I can help connect you to these groups.
For assistance with any of these pieces or something unrelated to finances, please contact me at 307.333.1273 or firstname.lastname@example.org. I’d be so happy to help you find your hand up and cheer you on as you keep moving forward in caring for your family!
It is officially September, which means so much more to me these days than it ever used to. September for me is no longer just about the beginning of the school year and the changing seasons. September is now all about Childhood Cancer Awareness Month, which is a cause that has become so dear to me since my only daughter was diagnosed with brain cancer at just 4 months old in July 2012.
Childhood cancer never got a second thought from me before it showed up in my family. I saw the pictures of the smiling, bald, beautiful children on the St. Jude’s commercials and didn’t really understand what an awful disease it is.
This picture here was taken just days before Olivia died at 20 months and 3 days old. With each day the tumor grew larger and made her head and face swell. She could no longer see. She slept all the time. She had no strength left. She was utterly and completely miserable. It is nearly impossible to explain the anguish I felt at that time. Seeing my child die was the worst experience of my entire life.
Childhood cancer is not pretty. These kids fight hard battles that should never, ever be a part of a child’s life. They spend the majority of their time getting chemo, radiation, sitting in hospital rooms, and watching life go by from inside the glass of the hospital building. They see countless doctors, nurses and specialists. They get MRIs, CT scans, and go under anesthesia regularly. They take more medications than most of us have ever seen outside of a pharmacy.
Childhood cancer is a horrible disease that desperately needs a cure. I know the pictures of the reality of what it does are hard to see, but please don't turn away. Childhood cancer doesn’t discriminate. No one ever thinks it will be their child, their niece, their grandson. But I can promise you there’s not a single family affected by childhood cancer that thought it would ever happen to them.
You can do something. You can help give these children the future they deserve. You can be the change. Consider getting involved during this Childhood Cancer Awareness Month! We currently have a Miles For Gold Campaign running with our partners at Stella Strong. Join us as we move our bodies to raise funding and awareness for pediatric cancer research! Learn more and sign up today by visiting www.oliviacaldwellfoundation.org.
About a year ago my husband and I went through the Dave Ramsey Financial Peace University and it radically changed the way we see our finances. The concepts are simple, and I won’t go into too much detail here, but the basics are to pay off debt, secure a 3-6 month emergency fund, invest/save for retirement, save for your childrens’ college fund, pay off your house, build wealth & give like no other.
While it would seem like you should follow these steps in order, there actually is quite a bit of overlap. If you’re just starting out with budgeting, steps 1 and 2 are extremely important- you need to get out of debt and save up enough money in an emergency fund to support yourself and family for 3-6 months. There are tons of budgeting apps or programs you can use but FPU suggests the Every Dollar app and honestly, it has been super helpful for my family.
Only 1 in 3 Americans has a written budget so it’s actually no surprise when you see staggering stats like these:
Once you have secured yourself by getting out of debt (credit cards, car loans, student debt) and saving up an emergency fund, this is where you can start to intermix the next steps. Your budget can start to change as you free up more money on a monthly basis to start investing in the future.
I remember being in tears at one point during FPU because they were sharing stories of families who had followed all of the steps and were able to give tremendously because they set themselves up financially to do so. People were paying off their kid’s mortgages, donating massive amounts to their favorite charities and doing so without hesitation.
The biggest “aha” moment for us was when creating our budget based on the steps, we weren’t budgeting any money for monthly giving. We aren’t at the point financially (yet) to be able to donate tons of money but we were able to allocate a portion of our monthly budget to charitable giving simply by adding a Giving category to our budget. Now without having to bat an eye, we know a set amount of our income is going to our favorite charities/organizations. When we want to tithe at church, help a friend after a medical emergency, donate to our favorite nonprofit’s fundraiser we can do so without breaking the bank.
Now, if you’re thinking this isn’t a reality for you because you don’t make enough money, I challenge you to change your mindset. Budgets can work for any size of income and giving can come in all shapes and sizes. You don’t have to donate hundreds of dollars a month to make an impact. Even a simple $15 monthly donation can help make a huge difference for your favorite nonprofit.
Lots of nonprofits have adopted a monthly giving program that makes your donation as simple as signing up for Netflix. On a monthly basis, a specified amount is donated from your account without you having to click a button or mail in a check. I encourage you to look into this option for your favorite organization. Maybe writing a $300 check doesn’t work in your budget but I’d wager you could probably find $25 in your monthly budget to give.
Whether you’re at the beginning stages of budgeting or you are financially secure, I hope you see the potential you can have in this world if you allow your budget to work for the good of yourself and others.
To learn more about how your monthly donation with the Olivia Caldwell Foundation's Circle Of Hope monthly giving program can massively impact the future of children battling cancer and other serious diseases please check out our website.
During my short career as a golf professional, I met a lot of great people. One of those people (or group of people) is the Caldwell Family. Mark Caldwell is retired from the Washoe County Sherriff's Office, and was working at the golf course when I started working there. We became friends fast and worked together for 5 years. During that time, my wife, Janelle and I learned that we were going to have a baby.
During Janelle's pregnancy, I experienced all of the fears of having a healthy baby. At the same time, Mark's granddaughter, Olivia was fighting brain cancer, and passed away. I will never forget that day that Mark came into the bag room with the news. It broke my heart and really hit home, having a baby of my own on the way. I wanted to do something but had no idea what or how. Golf pros aren't the highest paid people in the world, and I wanted to create awareness for the horrible disease and help out these kids who deserve a fighting chance. Mark's daughter in law, and Olivia's mother Katie, had beat me to it and founded the Olivia Caldwell Foundation.
At this time, my wife Janelle had been roping me into doing races with her for years. We had done triathlons and numerous running events together. I figured the next race for me that I hadn't completed was a full ironman. Katie was living in Wyoming, so I chose the Ironman Coeur d'Alene with the hopes that everyone would be able to go to the race, with the neutral location of Idaho. I had never met Katie before, so I told Mark what my plans were and he got me and Katie connected.
Janelle, Katie, and I got together via phone and emails to brainstorm how to raise funds and the Race for Olivia was born. Katie started a Face book page and I formulated a training plan. Janelle was the brains behind all of the content and fundraising, while I swam, biked, and ran, over and over, and over. Our goal, by the end of the race, was to have raised one dollar for every mile that I trained. Over the next year, I had traveled over 3,000 miles and raised over $7,000 from people all over the country. It was eye opening how much support we were getting.
As if training for a full ironman wasn't enough, that year brought many more challenges. One of my mentors in the Marine Corps had committed suicide, we had to put our beloved Saint Bernard down, and being a father and husband is always priority number one. So, life is simply busy. Through all of the hard times, and spending my days off work completing eight hour bike rides, I had one thing in the back of my mind - none of these struggles is as hard as losing a child. That is what kept me going. People need to fight for these children who cannot fight for themselves.
About eight weeks from the race, I landed in the emergency room with epididymitis. For those that do not know what this is, I will let you look it up. I was given mild antibiotics because apparently what they wanted to give me, would weaken my tendons, and there is a history of it rupturing achilles tendons. Being a less effective drug, the doctors were unsure if it would work. If it didn't, I would've had to switch to the other drug for treatment, and not be able to finish what I had started. That would have been devastating. After 11 months of training, to be forced to stop. Luckily, the medicine worked and I was able to use the two weeks to rest and recover. The last few weeks of training went by fast and it was time to head to Idaho.
The morning of the race was early, cold and dark. I headed to the start with my family and friends that had travelled with me to be a part of this. Everyone was wearing Race for Olivia shirts that we had created as another way to raise funds. This made it easy for me to see them, hearing them was not a problem as they were screaming every time I went by. The 2.1 mile swim was a breeze. Probably my best event, and I was very fresh and rested. Next came the 112 mile bike ride. Cycling is my nemesis, and just happens to be the longest part. But not too far into it, I rounded a corner, looked up and saw Katie, whom I had never met, for the first time. I instantly knew who it was and got a spark of energy. I can't explain all of the things that happen mentally on a ride that long, but it was like the twilight zone. Ironman Coeur d'Alene has a high percentage of people who do not finish, and I experienced why during that day. As I was riding, I saw people rolling around on the side of the street, and many just sitting there in defeat. There were many times that I wanted to turn around and quit. Each time that thought popped up in my head I thought of Bella. I could not bear to face my 3 year old daughter and tell her that I quit. I pressed on, and the pain was over later that afternoon.
Next came the full marathon. That was the easy part. Running has always been my strength. The challenging part of the run was more of a mental challenge than anything. When the sun went down, I realized I had been out there literally all day. Bella knew I needed something and ran out on the course as I passed her, to give me a big hug. There was another surge of energy. The run was three laps, each being around nine miles. So while I was out there, everyone you saw would ask what lap you were on. Man was I jealous of the people who got to turn right to the finish as I turned left for laps two and three. During that run, I was ingesting everything from straight salt to Coke a Cola. Just as I was about to turn right to the finish, someone handed me a Red Bull. I could hear the music and everyone cheering about one eighth of a mile away. Almost home.
Crossing the finish line was one of the most memorable experiences of my life. I had so many people that supported me through the last year there. I immediately went and hugged Janelle and Bella. Mark and the other employees from the golf course were there. Finally, I then got to meet Katie. We hugged and had a special moment, that being the first time we had ever met.
Now that it has been a few years since that day, many things have changed. Janelle and I have another beautiful daughter named Chloe and we have another psychotic dog named Happy. I'm not sure if Bella really remembers that day, or the purpose behind it, but I hope I set an example for her that she can do anything she puts her mind to. I also hope she always follows through on her word. But most of all I hope she will always try to make a difference in this world with whatever she feels passionate about. As for myself and Janelle, we are still doing races, nothing as extreme as before we had two children, but we still stay active. I hope my efforts in the Race for Olivia, brought awareness to the foundation. You don't need to do an ironman, or anything physical for that matter. I challenge you to find what you are good at, be creative, and use that skill to better the world. As they say in the Ironman community, "Anything is possible."