The Butler Family

As told by Maura and Christopher Butler


Life can get messy, full, and tough, but at Jill’s House, we can rest assured our special kids are treated with dignity, respect, and love. This blesses our whole family. It is incredible!

When Dorothy was born, we weren’t aware she would have special needs, but my maternal instincts were telling me that something was different. When she was about six months old and not able to sit up, I brought my concerns to our pediatrician. I was encouraged not to worry and was told that each child develops at a different pace. But when Dorothy was almost one year old and only barely able to sit but certainly not crawl, I became her advocate. I educated myself about terms such as “low muscle tone,” “occupational therapy,” and “speech therapy.” I had never heard of a developmental pediatrician but learned and then fought for her to be seen by one.

As grateful as we were to be on a path with both a new pediatrician who listened to my concerns and a developmental pediatrician, we still didn’t have a diagnosis for Dorothy. She was receiving medical care, multiple therapies, and undergoing dozens of tests, and we discussed a variety of treatment options, but there was no clear diagnosis. I continued to advocate for Dorothy through this difficult season. (I’ve never really stopped.) I trusted that the Lord was in control and certainly grew in faith without knowing what Dorothy’s diagnosis was. Abandoning my earthly desires “to know” was not a one-time act of will; it was put on repeat.

When Dorothy was nine years old, we were finally able to understand the unique way in which God had knit Dorothy together. Through genetic testing, we discovered that Dorothy has Mowat–Wilson syndrome, a rare genetic condition with only a few hundred known cases worldwide. The moment I was told her diagnosis, I was overcome with joy. We couldn’t help but praise God. Our joy might not have made sense to our medical team, but we had been searching for answers for nine years, and in a way, I felt like God had blessed us for our faithfulness.

God made Dorothy intentionally and on purpose, without mistakes or hiccups. Dorothy has a role to play in salvation history that only she can fulfill, and Mowat–Wilson syndrome is part of that story.

Jill’s House is also part of the story!

We found out about Jill’s House from a family at Dorothy’s elementary school. We didn’t have support or family nearby, and we were tired. I remember freaking out during her first weekend overnight stay. I called many times, and I kept thinking, “Who needs respite from her own child?!” A woman I didn’t know very well (we have since become friends) had come to our home for a mom’s group that weekend, and she helped me understand that my children, including Dorothy, needed respite, too. Dorothy needing respite from us hadn’t crossed my mind. When I began to consider how Jill’s House was providing a time of respite for our whole family, it radically changed my perspective.

While Dorothy is at Jill’s House, we plan activities our other five children do not get to do otherwise. Our kids don’t feel that Dorothy needs to be somewhere else so they can have a good time. On the contrary, they feel free to have fun because they know she is having a blast at Jill’s House! Dorothy is so happy at Jill’s House; she wants to go there, she has friends there, and she gets to do things she loves with wonderful people.

The constant vigilance one must have on a child with special needs gets exhausting, not in an exasperating way, but mentally and physically exhausting. While Dorothy is at Jill’s House, though we may be involved in busy activities, I feel relaxed. That is what respite is! Several years ago, I sat on a panel discussion with other Jill’s House moms, and I remember all of us shared that other than Jill’s House, we had nowhere else for respite. I am so grateful for the impact Jill’s House has had on so many families!