The journey of a caregiver & Medical Mom

Episode 157 of The On-Air Advocate

Original Airdate: November 25, 2019
Host: Tammy Flynn, Connect with Tammy on Facebook @theonairadvocate.
Guest: Dede Dankelson mother, caregiver and founder/creator of Pete’s Diary

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Guest’s Background: At Dede’s 20 week ultrasound they were told that there was an issue with Pete’s jaw, kidney and the possibility of a multitude of other issues. They suggested to them they may want to consider aborting at this point. Taking into consideration the other unknown issues. During this time is when Dede learned the importance of proper communication between medical staff and families.

Pete was later born premature and spent his first 102 days in the NICU. He was diagnosed with Goldenhar Syndrome. At that point Dede started to journal each day writing about the journey in her son’s Pete’s voice to help people understand what he was going through. It would later become its own platform “Pete’s Diary”.

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Dede’s Lightbulb Moments:

• There are no absolutes in medicine it’s called a practice for a reason. Remember you have just as much input to give/communicate from a medial standpoint as the parent. Always consider your audience and their level of experience.
• Ultrasounds can be wrong.
• She began seeing a therapist after Pete turned 1.
• When Pete was younger Dede struggled with her Identity when it came to feel like a full time nurse for Pete VS Mom. That has gotten better sense Pete is older and can communicate his needs.
• After brother Jacob was born Dede was able to have more “mom experiences.”
• As Pete became older the medical part became less of the focus of their everyday life because that is clearly not healthy. (surgeries were inevitable)
• Dede spoke about her struggles with the state, feeling she was being judged and constantly questioned. She also shared that family members struggled to understand their life with Pete. She reminds everyone that there is no such thing as “normal” , no “absolutes” and to have patience.​

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Where To Find Pete’s Diary On Social Media & How To Connect With Dede And Pete
Facebook@Pete’s Diary
Instagram@Pete’sDiary
Twitter@Pete’sDiary
Youtube @Pete’s Diary
Website: petesdiary.com

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Tammy’s Final Thoughts:

• Give yourself patience and grace through the journey.
• You are always the BEST advocate for yourself and loved ones.
• When dealing with outside supportive services sometimes we have to switch are approach and mindset to have success.
• Sometimes the world misses the fact that real life situations with relationships , marriage, children, family, friends, finances, additional jobs etc still happen for those caring daily for their loved ones.

Listen or watch the full episode below: