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Dillian’s Story

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A Caucasian man and woman with their medically fragile foster son smiling at the camera.

Through a Facebook page that our local Department of Human Services (DHS) uses to communicate with our community, we saw a post seeking a very specific placement need. So, we sent an email and got an email back almost immediately. Then they called and gave us all the information they could about a little boy. At that point, we knew he was a victim of shaken baby syndrome and that he had global deficits. He was only 4 months old, so they didn't know for sure what his future looked like but they assumed he was blind or had a visual impairment. Unsure at this point what the full extent of his injury was, they just knew he didn't react in the typical way babies should react. He had seizures or what looked like the potential for seizures, and he was being fed through a feeding tube because he lost his ability to suck and swallow. It seemed every day in the hospital brought more diagnoses. But, we said yes. Days later, we met Dillian and we fell in love and started our journey together.

At first, he didn't want to be touched at all. He hated being held. He would cry and cry and cry. I remember we tried what felt like everything. We tried an infant massage, essential oils, not wearing perfume, and washing our clothes in unscented laundry soap. We tried everything. We ordered weighted blankets. We even bought him earmuffs that barely fit on his little tiny head. It was like he was over stimulated all the time, but we couldn't figure it out. Over a few months, we eventually found out that he was deaf and blind. So, at that point, we realized we needed to find a way to communicate with him. We were told to be consistent so he would know who we are and start to feel safe again. I started wearing a perfume that was the same every day so that he could get used to the smell, and we tried drum vibrations to see if he could feel sound and then us talking by putting our faces up next to his skin. We learned to address his other senses. Over time, you could tell that I was his person and he would calm down.

We hired, out of pocket, two nurses. One nurse came a couple of nights a week so that I could sleep. One nurse came a couple of days during the week so that we could spend some time with our kids because we were just so confined at that point because Dillian’s needs were so high. We reached out to DHS and while there were a lot of resources available if we were the biological parents or the legal parents, because we were the foster parents, there was a gap. We and he just fell through the cracks. So, we petitioned DHS to explain to them why we felt it was necessary that we be given that same opportunity as any legal parent, and we were given the opportunity to talk to their central office. There was this amazing group of people there that just saw the need and they thought outside the box. They didn't see Dillian as a number or just the name on a black and white sheet of paper. They saw Dillian and the need that we had to be able to care for him. They established a program that allowed us to have the nursing hours that he qualified for. By doing this, they allowed us to bring Dillian and other kids with extensive needs into our home and care for them just as if they were our own. DHS chose to reimburse us for the nursing care that we have provided out to pocket for him, which was far more than what they were required to do. Because DHS thought out of the box, we've been able to serve 11 additional medically fragile or medically needy kids since then.

So through Dillian, the system has changed the way we've been able to provide foster care just here in our community for kids who fall through the gaps. His story isn't just about the abuse. It's about all the amazing things that came from his life. Our lives totally changed on April 17, 2017, when we were told they had made the decision to place him in hospice.

At that time, we petitioned child welfare to help us adopt our son officially. It took them less than 3 weeks from the time of delegation to when we finalized his adoption. I believe it is still currently the quickest adoption processed in our state. The judge, everybody at state, was trying to make it as easy as possible on us during this difficult time. The county judge offered to come out on the weekend to do the ceremony at our home because of Dillian's condition. At that point, we weren't concerned about doing a ceremony. We just wanted him to be ours. We wanted him to have his family and, boy, everyone supported us. DHS made him a priority. They made our family a priority. From our local child welfare office and caseworker making sure all the paper work was done, all the way up to the state level at the central office. They knew who he was. They put us in touch with a liaison that walked us through every step, and every couple of days they would call us and let us know where we were in the process. When the time came, our local judge offered to come out to our home to deliver the certificate herself. It really spoke to the community and to the human side of child welfare. It spoke to how they care about these kids and how these kids aren't not just numbers. They cared about our family and our needs. The Lord has been so faithful to redeem his story, to shine so much light because of him that we now have a home filled with little babies that just need a little extra care. We've learned how to navigate the system and build relationships with the agencies so that all of these little kids get exactly what they need. We work with the agency to look for gaps and find solutions so these kids don’t fall through the cracks. We've learned to communicate with biological families and see them through eyes that only God can give us, to understand that they have a backstory. By loving these little kids for who they are and not the story that's been dealt them, we can change whatever that future picture might look like.

To learn more about Dillian’s story and his legacy project, please visit www.dilliansplace.com.

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