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.