4 Tips To Help Advocate For Your Children With Complex Medical Conditions

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:

1. Use Technology To Help You - It is a lot to keep track of everything you need to do for a child with special medical needs! And the stress of possibly forgetting something is enough to make anyone feel anxious! Don’t be afraid to use technology to help you keep track of it all! I set up calendar reminders when I need to call and order supplies and have even set up alarms on my phone to remind me of medication times. These are simple things, but help me tremendously!
2.   Write Out A Care Plan - I have a written plan I can give to anyone who is taking care of Wyatt in my absence. It lays out what a normal blood sugar looks like, how to treat a low or high blood sugar, how to use his insulin pump, and what to do in the case of an emergency. This simple plan has helped a lot with Wyatt’s school and when he needs to stay with a babysitter.
3.   Teach Your Child To Be Their Own Advocate - As your child gets older don’t be afraid to allow them to take more control of their own health and teach them how to be their own best advocate! Wyatt is well-versed in how to operate his insulin pump. He also understands what his sugars should be and knows what to do when he is high or low. Most of the time I can tell an adult that’s caring for him that Wyatt can do most of his diabetic care by himself, he just needs an adult to look it over and make sure he hasn’t miscalculated anything. This has been great for Wyatt because it gives him a sense of control over his medical condition and it also makes him a partner in his own care. There are obviously limits to what he can do for himself (he is only 9) but I’m glad he’s learning how to be his own advocate at such a young age!
4.   ​Encourage Your Child To Not Be Limited In Life By Their Medical Needs - My husband and I work hard with Wyatt to teach him how to live a full and happy life without allowing his diabetes to define what he can do. We want him to see that he can still participate in sports and reach for the stars. Yes, he needs to take extra precautions to make sure his devices are secured safely to his body and we do need to take extra care to make sure his blood sugars don’t go crazy when he is exercising hard, but that doesn’t stop him from participating! When Wyatt was in 1st grade we were able to arrange for him to meet a star basketball player from University of Nevada (my alma mater) who is also a Type 1 Diabetic. This fantastic young man took the time to not only meet Wyatt and take a picture with him, but to talk with him and show him what’s possible. It was a really cool experience for Wyatt that showed him the only limits in life are the ones he places for himself. This same basketball player is now playing professionally overseas.

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 [email protected]. ​

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Katie Caldwell-Burchett, CEO/Founder

Katie, Olivia Caldwell's mother, has fourteen years of experience in marketing, writing, social media management and business. After Olivia passed away in October 2013, Katie decided to devote her life to fighting to raise awareness and funding for pediatric cancer research and improving access to pediatric care in Wyoming. 
atie was also the recipient of the 2020 Wyoming Jefferson Award for Volunteerism and is the author of the blog, BeautyFromTheAshes, which is dedicated to telling her story of finding new life, love and joy after loss. Her blog has been featured on Freshly Pressed and was awarded as one of the Top 75 Childhood Cancer Blogs in 2017.