On The Road!
The Patient Advocacy Team is hitting the road this summer! I am excited to have Eileen Ford - our new Foundation Assistant - on board as we continue to reach out to individual counties in Wyoming.
In May we get a few days in Gillette. June sees us in Lander and Riverton. And Sheridan is in the works! It is shaping up to be a fun summer with more events to come.
Why do we travel?
The Patient Advocacy Program is a free, state-wide support opportunity for families who have a child with a chronic illness or medically complex condition. That can be anything from a premature birth to asthma to a rare genetic disease to cancer. There is no specific diagnosis needed to qualify for support.
Our families come from the four corners of the state and everywhere in between. It makes a big difference to them to know what is local, even if that means within their county or neighboring counties. Their needs can be as varied as the diagnosis: help finding an affordable cell phone and plan, gas cards to get to out of state appointments, tax assistance, affordable housing, groceries, respite care, funeral costs, school support, sibling care and summer camps, rent assistance. These are just a few examples from the past month that have come up. In order to make sure that we have plenty of resources and good connections within each community, we do our research from homebase in Casper and then go to where the families are to shore up our relationships with community partners and see those we’re supporting face to face whenever possible!
Get the Word Out
The world we live in is stressful, no arguments there. Fact: as more stressors get added to our plates, the harder it is to manage. Another fact: that doesn’t make a value judgment on our humanity, just proves our humanity. If you or someone you know has a child diagnosed with a medically complex condition or a chronic illness, those stressors add up quickly and some things just cannot get done because there isn’t enough of you or them to do it.
We want to make sure that every family that needs support receives it. It is a win-win for us when we know what exists in communities and that communities know we exist. For a real life example, knowing about respite providers is not exactly in every parent’s or guardian’s wheelhouse. But when they need a break because they spend most waking hours caring the energy to pinpoint that help often doesn’t exist. In this situation, it took myself and another organization that I referred the family over to for other support that eventually made connections to two wonderful respite providers possible. That saying “it takes a village to raise a child” explodes into greater depth of meaning when we can all work together for the family’s good.
Still Available on the Go
While we may be out and about in different counties or other events, we are still “here!” If you or someone you know lives in our great state of Wyoming and has a child diagnosed with chronic illness or a medically complex condition, please contact us! Our website (www.oliviacaldwellfoundation.org) has a direct link to my email (email@example.com), you can call at 307-333-1273 or find us on Facebook to send a DM!
Today's youth are under pressure — now more than ever — in schools, in our communities, and online.
How many times have you whispered to yourself, “I’m so glad social media wasn’t around when we were kids”. Most of us seemed to live in a simpler time when we were kids. We could go outside to play and wander the streets without worry, we weren’t attached to a phone (unless you were one of the lucky ones with your own personal phone line in your room), there was no evidence of something we did that would be blasted all over the internet.
I take a look at kids these days who seem to grow up too fast and are addicted to technology and it makes my heart ache. Every time I hear a child under 12 talk about a Tik Tok video or when they have to practice a school shooting drill at school- it reminds me that times are definitely different and as parents we have to learn how to support our kids through something we don’t have experience with.
There are so many different types of social pressure and external interruptions that we have to figure out how to support our kids through. So how do we do it all?
Three pieces of advice I have are:
Trusting Your Instincts:
As much as we were able to choose our kids’ friends and environment when they were little, as soon as they go to school you no longer have a say as to who they make friends with. From my experience, that sometimes means your kids are exposed to a completely different set of family values and rules. My kids have learned more things this year that I was unprepared to deal with but had to learn how to navigate.
If you have that nagging feeling that your child is being picked on, is acting more sensitive, or even talking in a way you’ve never taught them- listen to it! You know your child best, so if something’s off make sure you trust those instincts and figure out how you want to handle the situation. This leads me to my next piece of advice, open communication.
Keep Open Lines of Communication:
This one is so important in my opinion. We just moved to a new town this year and therefore the kids started a new school. New school means new kids that I don’t really know. They have learned so many things this year that I frankly didn’t even know kids under 10 years old knew. We don’t let our kids watch YouTube, Tik Tok or even have their own phones because in my opinion they are too young but they were starting to talk about things they had seen on these channels so I knew they were still gaining access elsewhere.
I had to sit my kids down and talk with them about why we didn’t let them watch these things and even when they weren’t home, it wasn’t okay for them to watch either. We had to lay down the truth that the internet can be a scary place for kids to be and it’s not appropriate for them to be on certain unmonitored channels. Every time they go over to a friend’s house where I know the rules are more lax, we have to remind them about our rules and that they need to be followed even when they are elsewhere.
Keeping the lines of communication open with other adults in your kids life is equally as important. When one of my kids was struggling at school with behavioral issues I wasn’t given much information and had to initiate conversations with the teacher and counselor to see how I could help from my end. If your values don’t align with your child’s teacher, their friends’ parents or whoever, make sure to share and openly communicate your values and how you would appreciate some consistency so your child doesn’t get confused by all the different sets of rules.
Lean On A Friend:
This has probably been the most helpful thing as a parent thus far. If you have a friend whose kids are just a little older than yours, they have probably already dealt with the situations you are about to stumble upon. Lean on them for advice on how they handle this new world our kids are growing up in. It’s a wild new world our kids are growing up in so any advice from someone who’s already been through it is extremely helpful.
If you feel like your child’s mental health is affected at all please know you have support available. Helping your child find the support they need to navigate through their struggles will help them flourish into thriving adults.
The Olivia Caldwell Foundation is proud to offer a mental health support group for parents and caregivers of children with a mental health concern. Take advantage of this free resource to see how you can support them. Find out more information on our website http://www.oliviacaldwellfoundation.org/support-groups.html
Letting Go of Guilt
I feel as adults we have all had something at some point in our life that has made us feel some sort of guilt. Whether it be the piece of candy you stole from the dollar store when you were 6, or the lack of time spent with a loved one only for it to end before you had the chance. Guilt is such a hard pill to swallow. Because once it hits, it can consume you and hold you hostage. It can creep on you when you least expect it. It is a dirty little devil.
A couple years ago, my life as a mother changed forever. My son was diagnosed with a rare cancer disorder that showed up after an appendix rupture. I can remember the doctor's face, the tears that followed those words and the look of fear on my oldest son's face. I don't think that kind of news ever really sits right. How could it? My entire knowledge of the word ‘cancer’ was horrifying. I have lost many good people in my life to cancer and everything I had ever known about it was just plain bad.
The real picture of my son’s diagnosis isn't black and white. It is still one of the most rare forms to have and the knowledge behind it as a whole is still in the process of lots of research. Especially since it is even more rare for a pediatric case. He will forever have it. He will continue to be tested his whole life to watch for growths and complications from it. When there are no growths to be found, he is for the most part healthy. You think I would be ecstatic at this fact. Which I am. But this is the point my friends where that fun little feeling of guilt creeps up.
There is a saying that “things could be worse.” And man could they be. My son could have a death door knocking condition, going through horrid treatments and spending his days in the hospital away from everything he knows. But he isn't. Aside from the routine testing and quarterly doctor visits, he gets to live his teenage life tormenting his siblings and testing every last parent button I have. As a mother, I am beyond grateful for where we are at with his cancer. He is currently healthy and has minimal complications. And when I start to overthink, I start to feel the guilt set in. What did I do to deserve the ladder of this experience? Why him, why me and why not all others?
I feel a good portion of guilt about this almost everyday. Maybe it is part of the grieving process. I am not sure. But all I know is the weight of the guilt some days can outweigh the fact that my son is ok. I have many friends that have lost their children to cancer or other illnesses. Young lives taken before they really were able to live a full life. That just sits heavy on my heart. How can I talk about my son being healthy when others weren't lucky? How can I sit back and be Ok with the fact if there was a good diagnosis, this is probably it. Am I happy about the diagnosis? Absolutely not. I wish everyday that it wasn't a thing. I wish life was like it was before the diagnosis. But it's not.
So why would I allow myself to have these guilty feelings? I shouldn’t. Every situation is different. Every diagnosis is different. Every person is different. I have spent so much of my time not allowing myself to be upset and bothered by my son's diagnosis because “it could be worse.” Just because it isn’t as critical in the moment as others have been, doesn't mean it is any less real or any less worthy of my true feelings.
I share this story because my hope is to enlighten others about a few of the emotions that come as a parent with a child that has a complex medical condition. What it's like to live in a not so perfect world. I want others to know that their feelings are valid and they aren't alone. But I mostly want them to know that it's ok to feel relieved at any sight of hope, even if it isn't fair to those around you or you don't think you deserve it.
Your emotions about your current situation do not need to diminish because others had a not so happy outcome. Your current situation is just as important as others even if it doesn't seem like it. It is time to let go of the guilt you feel because your situation is different or “better” from others.
Here are a few ways you can let go of that guilt.
Allow yourself to feel just how you need to heal or deal.
Allow it to be ok even if it feels like you have no right to feel that way.
Give yourself grace.
Stay out of your head.
Don't be afraid to talk about it.
Don’t be afraid to get help if you have trouble sorting through the emotions.
If you need additional support you can also always reach out to our Patient Advocate, Katelin, who would be happy to be a helping hand and to connect you to any help you might need to get through this.
Write something about yourself. No need to be fancy, just an overview.