ONCE UPON A GENE - EPISODE 025 - A Grandfather's Story of Guardianship, Caregiving and Advocacy
Parents and caregivers often hear, "I don't know how you do it". We do it because we have no choice and we do it well because we do have a choice. We do it because we're human beings who love each other. This is a touching story of hope, kindness and giving back. Jeremy Kredlo is sharing his story of becoming the legal guardian of his granddaughter, Kylee.
EPISODE HIGHLIGHTS
Tell everyone who you are and about your story.
I'm the grandfather and custodial guardian of Kylee. She's 11 years old and was born in October 2008. My oldest daughter had a regular pregnancy with no warning signs that anything was wrong. She went into labor and was in labor for over 24 hours. She's about 90 pounds, so when she reached the 24 hour mark in labor, the OBGYN decided it was time to perform an emergency c-section for failure to progress. I sat in the operating room holding her hand during the procedure and the first words that were spoken in the delivery room after Kylee was delivered were by the anesthesiologist who said "Congratulations, you have a quiet baby". The second words spoken were from the delivering physician who yelled "She's not breathing". Kylee had at some point either during labor or shortly before labor, lost oxygen for an extended period of time and the loss of oxygen had been sustained for long enough that the majority of her brain tissue was killed. She was put into the NICU and they didn't believe that she would survive the first 24 hours. She wasn't passing urine and she had a number of concerning health conditions. After the first 24 hours, her body started responding normally and she started hitting all of the autonomic milestones that were necessary to sustain life. She remained in the NICU for the first two months of her life. There were a series of tests that were done. Her APGAR scores were generally as low as you can get. She was diagnosed with Hypoxic-ischemic encephalopathy (HIE), which is essentially global brain damage and also seizures. Those were the two primary diagnoses at the time. After she was eventually able to be taken home, she spent the next six months of her life living with my daughter at my ex-wife's house. She was on a number of medications, was tube fed through an NG tube and she cried a lot. She was in a lot of pain and things were not going very well for her. After about six months, it became evident that she needed a better quality of care and better quality of life. I stepped in and took temporary guardianship of her to help my daughter and Kylee out. I signed paperwork for six months to help and started getting things in place for Kylee. I started getting home care nurses to come to the house and to help with transportation, neurology appointments, all of the things that needed to happen to ensure Kylee was able to have the best quality of life and care that could be provided. It became clear during that time that a temporary solution was not what was needed and that once everything was in place, going back to live with my daughter and my ex-wife was not going to be in Kylee's best interest. I made the very difficult and very heartbreaking decision to go to court to get full permanent guardianship of Kylee because of my concerns.
Did you have a hard time navigating the system and how were you able to do that and have the sudden sharp turn in your life?
At the time Kylee was coming to live with me was shortly after the recession had hit in 2008 and I ended up getting laid off from my job. Thankfully, I had positioned myself financially where I didn't need to go back to work right away and I was able to have that dedicated time to focus on Kylee and her needs while I wasn't working. My background was as a project manager and while I worked in information technology, part of being a project manager is knowing how to not take no for an answer, knowing how to escalate and how to sequence things to ensure you understand risks and action items. My background made me uniquely suited for the situation that I found myself in with Kylee. It allowed me to be successful in getting Kylee's services set up quickly and to navigate the system. The thing that was exposed to me was that I was a professional project manager with a significant amount of experience, I had a Master's degree, I was financially stable and I had trouble navigating the system. It exposed to me how much more difficult that would be for someone who English was their second language or they were a young parent without that type of professional background or they didn't have those same educational advantages or who were living paycheck to paycheck without the financial security that allowed me to pursue things that needed to be pursued. It reinforced to me how difficult the system is to navigate and how many people probably don't have the services they need and are entitled to just because they don't know how to navigate the system.
What helped you get into the mindset that you knew you were doing the best that you could taking care of yourself and Kylee?
It wasn't purposeful. I didn't read a book that fundamentally changed my life or go to a seminar with an illuminating epiphany. It was gradual and started with the speech therapist telling me that I couldn't just be Kylee's caregiver because that wouldn't be enough and that at some point I would look back and may even resent her because my life had been consumed by caring for her. I never wanted to get to that point because I loved her, so I made the first step of carving out time for myself. Slowly over time, other things started happening. I had a dear friend that would come over and bring food to my house every Friday night and she, Kylee and I would sit on the couch and watch Comedy Central standup. It just made a little space for things not to be about Kylee. I started carving out time to write, to give back to other people, to do volunteer work in the disabilities community and it was because of Kylee but it wasn't for Kylee. It was for me. Kylee has made me the man that I've always wanted to be.
What would you say to other male caregivers who are feeling along or are hesitant about reaching out to others and seeking a community?
As men, one of the challenges we have is that we're generally taught that the only valid emotion is anger and that anything else needs to get stuffed down and ignored. It's a toxic way to live your life, in my opinion. One of the things I'd say to other dads is to understand that this isn't something you can fix, that your child isn't broken and you're not going to find a solution. There are things you can control that help, so focus on those. Some of the things you can and should do is to work through your own emotions, reach out to other people going through this and share your experiences, frustrations, anger and grief. We're not alone in this and we don't have to solve or fix this ourselves. Understand that it's okay to not be okay and that you don't always have to be the strong one. Sometimes you can be the one to do the crying or the one that needs to take the time to work through what you're going through. This is a lonely journey and it's difficult to deal with by yourself. There are few people out there who truly understand what this is like. Talk to people who have that shared experience.
What are your favorite parts of the day with Kylee?
Her brain damage is so severe that she has a number of other medical conditions. She's completely blind, has advanced cerebral palsy and a number of other conditions. But, she's happy. Most of the time she's smiling. She's still g-tube fed, can't sit up unassisted, can't talk and can't communicate. It's difficult for her to have activities that we do together that are meaningful to both of us, but what she and I both get a lot of joy out of is our snuggle time. In the evenings, we'll sit in my theater room snuggled in on the couch and watch movies or tv shows together. Kylee has this beautiful smile on her face and loves being held and having that time with me, which is interesting because she doesn't have very many communication mechanisms. The bond she and I have shows in other ways.
What else would you like to share with those listening?
There are a lot of things I've learned over the years. I've learned how to navigate services, who to reach out to for information and medicinal knowledge- all the important things most of us learn along the way. It's essential that people find those resources, but what I want to encourage everyone on this journey to understand and focus on is the concept that what you're doing is enough. You're doing everything you can and you're not failing. You're doing so much more for your child than most people do for their children. It's vitally important to make time for yourself as well. Be okay with the idea that it's okay to step away and that you are more than just a caregiver and more than a parent. You need your own identity. In my experience, I'm an infinitely better caregiver because I take time for myself to pursue the things I want and need in my own life. Taking that time and making the effort to take care of myself has made all the difference for me and also Kylee.
LINKS AND RESOURCES MENTIONED
Washington State Fathers Network
Arc of King County Parent to Parent Program
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