Matt and Christine Phillips
How long have you been connected with David’s Refuge?
3 years
Please explain any diagnosis your child has, and you have experience with.
Our oldest daughter, Emmy, has both Spina Bifida and CASK Gene Disorder. CASK is ultra-rare, affecting only about 250 kids world wide. CASK attempts to control Emmy’s entire life: eating, speaking, mobility, seizures, general immune system, learning, etc. The only daily tasks Emmy can do without full support are smile, laugh, and sleep. She is so joyful and fun and while we don’t love the gazillions of appointments, therapies, surgeries, and hospital stays, we sure do love her exactly as she is!
What is your favorite part of being a host?
We love connecting with other families, especially other medical families. This can be a super lonely life and many don’t understand. It’s so nice to connect with those that do. We just hosted for the first time in May 2024 and we really enjoyed being able to tell families that this time for themselves to connect was important, necessary, and DESERVED. The weight that lifted off the shoulders and faces of those we hosted by the final breakfast was incredible and we love to be a small part of that.
What is something you want your guests to know about you?
We’re an open book! We will talk about any and everything regarding our children and our life. We also love to learn and will take any advice and experiences you have to give! That said, we also just love time to connect with each other and you as humans, not just the parents of disabled children.
Outside of caregiving, we love watching sports and so do our kids! We enjoy walks and playgrounds, and spending time with friends who get it. We love a good pizza and simple days and nights together.
What is a piece of advice you have found invaluable as a family with experience in special needs or a medically fragile diagnosis?
The most important thing we have learned on this journey is to listen and learn from the adult disabled community and take their lead on the way we treat our child and her diagnosis. We use the term disabled in every day life because Emmy is disabled and there is nothing wrong with that. So much of the way we speak and handle situations in the disabled world comes from following and connecting with disabled adults on social media. This is important to us as we try to raise both our daughters with the most dignity and respect possible for themselves and everyone around them.
Which partner location is your favorite and why?
We loved Tailwater Lodge as caregivers and are eager to try it out as hosts, too! That said, we have loved everywhere we’ve been, truly! 1000 Islands Harbor Hotel is the only place we’ve hosted so far and it was fabulous.
A genie grants you the ability to have infinite amount of one item. What is it?
Patience. Not because of our disabled daughter though…the two year old is…a two year old!
But really, I think understanding from others. We have lost and gained people along our journey and often it has to do with whether or not those people understand or are willing to understand what we handle on a daily basis.
What is a question you wish people would ask you less?
How do you do it? Regarding all we do as caregiver