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 email@example.com. 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."
It’s time to hit the books! First days of school are popping up across Wyoming in our different districts and that comes with cheers, tears, fears and sometimes all of the above for parents and kids. I hope everyone had a wonderful summer break and I also hope to give a few helpful tips on how to have a successful school year, especially if you have a child with a chronic illness or medically complex condition that can make school time tricky.
#1 - Embrace Your Child’s School Team
As sports, clubs and extra activities start back up, we all know that having a good team makes the experience and the effort go the extra mile! Our schools are filled with excellent teachers, guidance counselors, nurses, administrators and staff that are ready to be a good influence on your student’s life for the next nine months. Having strong, open communication with those within your child’s school that can be supportive while your child learns and grows and deals with his or her illness will be a major win for you all. If your child’s medical needs affect his or her school experience, having the right people in the know about specific needs, absences, and extra support will not only bring understanding for the staff, it will prop your student up to be successful. Start making your A Team on day 1 if you haven’t already!
#2 504 Plans
If your child needs a few accommodations or protections during the school year to ensure they are getting what they need without feeling like they are being punished, a 504 plan could be a great option! This is a free service for all children with documentation of a medical and/or mental health disability. Does your child struggle to see the white board or to hear the instructions from the teacher? Need to have timed breaks to visit the nurse to check blood sugars? Visits with the guidance counselor? A 504 Plan can help put these needs in place to help the student receive the support they need while at school. A 504 Plan does not change the education standards that your student needs to meet according to his or her grade level. It allows your student to have the seat in the classroom they need to ensure they are receiving the instruction they need to understand and complete their work. It makes sure that your child can keep up with their medical check ins with the nurse and not miss out on critical class time. It helps your child process and deal with the issues at hand in order to be able to focus on learning. If you think this may be a benefit to your child, contact your teacher, principal, school nurse or guidance counselor to start the process. If you’d like support behind the scenes or help setting up those meetings with the appropriate staff members, I’d be happy to help you! I can even attend your 504 plan meeting if that would be the most helpful for you.
Individual Education Plan. These plans are also free for families and require a formal multidisciplinary psych or neuropsych evaluation by school personnel. These plans can alter the education standards to set your child up for his or her greatest success. There are different categories of disability according to IDEA. They are Other Health Impairment (OHI), Traumatic Brain Injury (TBI), and Specific Learning Disability (SLD). You can talk to your school psychologist about these different categories to learn more about where your child might benefit from a plan to help him or her in school. Chronic illnesses and medically complex diagnoses do not need to hold your child back! Our schools are ready to help your child achieve the greatest success possible in his or her education. I would be happy to help connect you to staff personnel if you’d like to start a conversation about an I.E.P.
#4 Food Fuels the Mind
Sometimes our medical bills can make other costs of living more challenging to provide for our children. If you are struggling financially because of your child’s healthcare needs, you may be able to provide school meals for him or her in another way! Free and reduced meals are available for children that meet a certain economic guideline. But did you know that even if you do not meet that guideline on paper but are still struggling financially from your child’s medical bills, you can talk to your school principal about receiving free and reduced meals for your student? Having a good breakfast and lunch will help your student through their school day. If this is a challenge to provide at the moment, please don’t hesitate to talk to your school’s principal for more information about how to sign your child up for free and reduced school meals so that he or she can be bright and alert in class! If you would like more information or want support approaching your child’s principal, please reach out to me.
#5 Send your child with love!
School can be an exciting and nerve wracking experience for your child, especially if they have a chronic illness or medically complex condition that can set them apart from their peers. Remind your child that they are loved and accepted! Allow them space to process their feelings and expectations with you about the new school year - and throughout it. Encourage your child to make new friendships and strengthen old ones. Let him or her know that there are safe adults at school that are willing to listen and be supportive in good times and hard times. And have fun! School is a wonderful opportunity for your child to discover the world we live in and find lasting interests that could shape careers.
Happy back to school everyone! If there are other areas that you may want to be supported in for your child/family as you balance school with a medical diagnosis, I would be happy to walk beside you as we search out good resource options for your family. You can call me at the office at 307-333-1273, email me at firstname.lastname@example.org, or find us on social media and our website!
There is a lot of planning that goes into a successful fundraiser golf tournament. From the first day of planning a few months in advance to the week after the tournament and everything in between it takes a team of people to ensure no details are left incomplete. I wanted to give you a sneak peek into what goes on the day of our golf tournament.
As much as it takes our full staff to ensure the tournament goes off without a hitch, it certainly wouldn't be possible without a dedicated board of directors volunteering their time and we feel like we have the best board around to make sure the job gets done. Our board and staff start solidifying dates with the venue and other vital companies as much as a year in advance. We have some amazing companies in Casper that see the value in supporting OCF and we greatly appreciate their willingness to save the date for us. As the day of the tournament rolls around, it’s time to put all of the planning pieces into action!
We start the day bright and early to get everything set up before the first golfers arrive to check in. This year we did a double shotgun start with a morning and afternoon flight. We have a registration area where golfers check in, receive their gift (customized OCF golf towel and poker chip), and purchase any tickets (50/50 golf ball drop, golf helper packages to give them a leg up on their score, and extra tickets for our raffle giveaway).
This is where we coordinate with the golf pros about any last minute changes are made if there are any player replacements or no shows.
We also offer a sneak peek at the silent and live auction items. It takes a team of volunteers in the morning to set up the items to look attractive and create a good flow.
After the morning flight starts we prep for the afternoon shotgun and get to go around the course ensuring everyone is happy and mingle with the guests.
Now it’s time for the second flight to check in and we go through the same process as the morning. Once these golfers are off on the course it’s time to break down registration and move and set up the auction items to the banquet tent!
The golf course event staff are a great help with setting up the banquet so it looks beautiful. We just added a few decorations and coordinated the auction items.
After all the golfing is done, we get to move onto arguably the most fun part of the tournament- the banquet!
Guests arrive for a cocktail reception where they get to chat and start bidding on silent auction items. As dinner kicks off the guests enjoy speeches from our Founder/CEO and board members to remind them of the impact they are making by supporting the event. It is so important to connect the mission of the Olivia Caldwell Foundation back to the reason we are all gathered at the tournament.
This was the first year we did a golf ball drop and it was a blast. Not only did golfers have the opportunity to purchase a 50/50 numbered golf ball but it was open to the public as well. We put all of the purchased numbers into a bucket that was hoisted into the air by a crane. They were released and plummeted to the ground at a target. The golf ball closest to the target was chosen as the winner to split the cash pot 50/50 with OCF. The winner graciously donated the proceeds back.
After the golf ball drop, the live auction kicked off. We started with a Mission Live Auction that allowed guests to donate in such a way that 100% of the proceeds benefit pediatric cancer research and our Pediatric Specialty Clinic. It is pretty amazing how generous our golfers are and we are so grateful for all of the support they provide. The second part of the Live Auction involves auctioning off our larger packages. This is where the energy in the tent goes up. People are bidding against each other in hopes of winning some fun vacations, golf packages and other unique items.
After all of the scheduled events take place the rest of the evening is spent enjoying each other’s company and thanking everyone for all of their hard work and support.
The beauty of a golf tournament vs other fundraising events we host is that there are moments of down time. Most events we are on full speed the entire time but when the golfers are off on the course the staff and board have a short span of time to decompress and enjoy the wonderful weather and guests!
Overall the golf tournament was a huge success. We cannot thank our volunteers enough for ensuring this event went smoothly and for our supporters and their drive to ensure children battling cancer and other serious diseases have the best possible chance and surviving and thriving. We look forward to seeing what’s possible for next year’s tournament!
I have spent a little time reflecting on the work I’ve been able to be a part of as the Patient Advocate the past 6 months and wanted to share a few things that struck me.
Since the launching of the Patient Advocacy Program at the end of January through the end of July, I have been able to serve 75 cases for families! Each family has been unique in their circumstances. Some parents had a sudden illness come upon one of their children. Some experienced a premature birth. Some had been dealing with a chronic illness or medically complex diagnosis with a child for years. Because the landscape is so diverse for our families, it has been clear that the research I do into resources around the state should be as broad as possible. I have needed to call on food banks, Wyoming Health Department programs, counselors, rent assistance (through foundations and federally funded programs), hotels for appointments, summer camps for children with similar illnesses and their families, and even college courses for parents needing to know how to care for their child when they return home from the hospital. Every family is unique and it matters to me to care for the whole family in their medical journey.
It has been amazing to see the chain of connections that bring a family to me! I have worked with social workers and other hospital personnel on behalf of families that I have never spoken to and that has been a great experience. Wyoming takes care of their own, but we do it fairly quietly. Being able to know more local resources around the state has been a huge help to families while they are still at an out of state hospital in need of support now or when they arrive home. It is pretty awesome to be able to pass along to the hospital personnel to make those connections a possibility! It is an incredible process every time to talk to these local resources and see their care and compassion to do whatever they can to help. We live in a pretty wonderful state!
It is also amazing to see how friends and family members will reach out on behalf of their loved ones that need support while their child is sick. I know that it can be hard to ask for help personally, so to have people in our lives who will start that process by reaching out for us can be a lot easier to receive a phone call instead of making one. I have had the privilege of hearing from a school nurse, friends, and other non profits that care for the child who is ill and their family and want them to find as much support as possible. Because they reached out to me, I could reach out to mom and/or dad. In those conversations, we were usually able to come up with a specific need(s) and go from there to help them on their way.
Some families have only needed one resource and they are ready to jet forward. Others have needed several resources at one time. And still others have had a very challenging road that has built into a more long term support team as their child’s illness continues to make waves for their lives. One thing that I have really enjoyed seeing is that no matter where a family is at, no matter what sort of needs they have, and no matter how long it takes, these families LOVE each other and are so committed to making it through the best that they can. I am so proud of how the families I have served have selflessly given so much to ensure that their family is being taken care of in difficult circumstances. I truly count it an honor to walk alongside them for however long they want me on their team!
If you know of anyone who has a child with a chronic illness or medically complex diagnosis, please consider reaching out to me or sending them my way. If you are that mom or dad, please do the same! It is amazing to see what resources we have in Wyoming for the families who need it. You can call me at 307-333-1273 or email me at email@example.com or find us on Facebook.
Living with the loss of a loved one is an incredibly hard thing. Even though there are countless books with ideas about how to move forward, I have found there really is no “one size fits all” approach to living life again after a loss of such magnitude.
We lost my only daughter, Olivia, to brain cancer when she was just a baby in October 2013. Even though she had been battling cancer for nearly a year and a half there was still nothing to prepare me for the magnitude of losing her so quickly and then for learning how to live life again without her.
This year will mark 9 years since I said goodbye to my little girl. The grief still hits me hard, and often, but there are some things I have learned about how to live with the magnitude of her loss. Here are a few of them:
1. Live With Their Memory In A Way That Is Comfortable For You & Your Family
I have developed friendships with many other mothers who have lost their children and what I have learned is there is no one size fits all approach to living with the memory of your child. You have to find what is comfortable for you! For instance, I find it comforting to know where Olivia’s clothes and belongings are in my home, but I can’t be surrounded by them either. That would be too much for me to bear on a daily basis.
We also have a few pictures of Olivia in our home that are visible, but we also have many more pictures of our family today. Living with too much of a reminder of all that we’ve lost would be way too hard for all of us, and it wouldn’t be fair to my living children and the memories we are making together today. I want my boys to know that while I miss their sister tremendously and think about her every day, I am equally as happy they are alive and I enjoy each moment with them.
2. Few People Will Understand Your Loss - Be Prepared To Educate Them
Thankfully the majority of our population won’t have to know the tremendous devastation that comes from losing a child. It’s a club that no one wants to join, but if you do, you will also find it is filled with the most compassionate and amazing people. For those who haven’t experienced this kind of loss though, there are some who will say things that are insensitive or unkind. Usually these comments come from a lack of understanding however, and not because they mean to be malicious in any way, so if you can, be willing to educate them.
For example, I’ve had people tell me I was lucky Olivia made it to 20 months. That was easier than if she had died at birth because “at least I had the chance to know her.” I’ve had others who have assumed that because I run a nonprofit in Olivia’s memory I must live my entire life with nothing but her on my brain, which “must be so hard for my other children.” These comments are just two examples of countless comments I’ve gotten from people who didn’t intend to be hurtful, they just didn’t understand. And how could they when they haven’t walked through this same path!
I could get angry, but instead I choose to educate. I’ve explained that all losses of children are incredibly hard, regardless of their age or the circumstances surrounding their loss. There is no “at least” when you’ve lost a child - there’s just the loss and the need for support and remembrance of that precious life.
I’ve also explained that while my work life is absolutely dedicated to Olivia’s memory and my work here at OCF has given me the ability to keep being her mom in a very tangible way, my home life is different. My family and I talk about her, we remember her, we love her, and we process our grief together when needed, but we also spend far more time choosing to focus on our family now. I want my kids to know that I love them just as much as I love their sister. They aren’t second-fiddle in my heart and I get great joy out of being their mama. It’s also important to me that they learn from my example of how to live with grief without letting it steal all of your joy.
3. Be Okay With Not Being Okay Sometimes -
The final piece of advice I want to share today is that it is perfectly okay to not be okay sometimes! I had always been the person who would keep it together no matter what for the sake of those around me and to guard my own heart. I would stuff and stuff my own grief partly because I had to be strong for the rest of my family, but also because I was worried that actually feeling the fullness of my grief would do me in.
I went to counseling a few years after Olivia’s death and my counselor told me something that still sticks with me today… “Katie, you have to learn to be okay with not being okay sometimes.” She also told me that on the days when I am not okay I had to learn how to let myself feel it, process the emotions, and then take care of myself to get through it. That was super hard to learn how to do! But I will tell you that doing it changed my life and my ability to deal with this tremendous loss.
At first, feeling that grief was debilitating. For those first months I spent many a day in a dark hole where I would cry and live in my pajamas because it was hard to do just about anything. Sometimes I would have a few days like that in a row or several in a month, but each time I would diligently allow myself to work through it. And then before I knew it I realized that I was having less of them, and when I did have a day like that it didn’t take me as long to recover because I knew what my heart needed to get through it.
Find out what you need when you aren’t okay. It could be a good cry in a bubble bath or a long walk. It could be curling up in bed under a heavy blanket alone or it could be time spent processing with a loved one. Just figure out what it is for you and know there isn’t a right answer and each bout with grief might require something a little bit different. It just needs to be something that is safe and that helps you heal your heart little by little.
While we all long for specialized care to be fully accessible in every community in Wyoming, the reality is that travel is still more often than not a part of managing a child’s medical diagnosis. To some of us, this may be a new world to navigate. To others who are a little more seasoned, this is not necessarily “easy” but it has worked itself into family life to be part of the new normal. I would like to pass along a few tips and tricks that I’ve heard can make a real difference to make these drives - no matter how far or how often - more manageable.
#1: List It Out
For those of you who are not Type A, lists can sometimes feel more of a burden than a help. But hear me out, as this may help keep us Type B’s a little more in our laid-back-go-with-the-flow skin.
A packing list may seem obvious, but when life is already overwhelming, trying to keep everything in our busy minds may be asking a little too much of ourselves. It may take a few trips to hone in on the perfect packing list for your family, so that’s why it may be handy to keep the list on your phone. We all typically have our phones with us at all times and there are plenty of apps that can help organize us. I have come to appreciate Google Keeps as I can add others to the lists and we can all put our great ideas into it. Plus, if I think of something while I’m on the go, it’s right there in my purse or pocket for a quick edit. For those of us who like paper - I get it - write it out and stick it somewhere just as accessible. Or type out something in a doc and print it each time you need it! It can be very satisfying in a busy time to be able to check, cross, or full on scribble a line out that’s been completed!
#2: Home Away from Home
It is not easy to pack up your family and household necessities for an appointment (or 3), reach your destination and realize that you’ve landed in a neighborhood hotel that is not in your preferred sort of neighborhood! This is especially true when traveling to the bigger cities like Denver or Salt Lake for care. The cheapest or closest hotel may not always be the safest, cleanest or in general a star-worthy experience for your family in an already stressful trip. If you’re not sure about where a good place to stay is, ask those who know the area (other parents, hospital Navigators, groups that help with travel). I’d also be happy to help point you in some good directions!
Know you’re going to be there often? Get to know your new neighborhood. Find places to stay that have the amenities you will need access to (i.e. grocery stores with/out delivery services) while you are there. New to the game and not even sure what you may need? Don’t hesitate to reach out to that same group of people in the know for some tips. Again, I’d be happy to help you!
#3: Make it Memorable
Navigating through your child’s illness is incredibly hard for the entire family! And traveling for treatment only makes that harder. So why not make time for a little bit of fun as a family when you are traveling to make some memories? It doesn’t have to be anything big or fancy, but it is amazing what a quick trip to the zoo, trying a new ice cream shop, or discovering a new park can do for everyone’s spirits during a difficult time!
If this trip is going to be more regular and the child recognizes to their own degree the hardship of it, do not feel bad for wanting to add something positive to their memory bank and future expectations that there will be something to look forward to, as well. And you don’t have to tell your kid(s) - but that memory could be a huge breath of fresh air for you, too.
Even though it might feel like you are alone in this medical journey, I can assure you that you are not! Countless other families have traveled similar paths and would love to help you get connected and feel less alone. Ask other families who have gone through a similar path of miles to help care for their child. Ask the Navigators, nurses - anyone - in the hospital or clinic what they know about and would recommend. Let’s also be real about the expense. The medical bills are enough on their own to oftentimes warrant (if possible) second jobs to cover it all. Add to that the gas, wear and tear on a vehicle, hotels, meals, and everything else that can pop up while you’re not at home and all of sudden these trips - that you will take no matter what for the sake of your child - are eating away at savings at a rapid pace. Please ask for help - there are so many wonderful organizations in Wyoming that want to help families like you with gas cards, hotel and meal vouchers, etc. Don’t know how to find them? I can help! It’s an honor to work with so many of these groups and I would be so happy to connect you to the group(s) that fit your needs the best.
If you ever need anything along your child’s medical journey and aren’t sure where to turn, I would be so happy to walk a few miles with you. Give me a call at (307)333-1273, email me at firstname.lastname@example.org, check out our website or find us on social media! Whatever is easiest for you, we’re here to help and cheer you on!