Welcome back to Different Dream for Part 2 of our interview with special needs dad Matt McNeil. Matt and his wife Shannon are the parents of Waverly and Oliver who live with MPS III, a terminal special needs diagnosis. In Part 1 of Matt’s interview, he gave the background of their family’s story and told how they they deal with grief. Today, he describes the support system that encourages his family in amazing ways.
How has your family been most encouraged and supported through your children’s diagnosis and decline?
So many people have stood with us and drawn closer to us since we were first diagnosed. We were unsure how our friends were going to react, and they have proved themselves time and again with their incredible love and generosity. One way that really stands out was when our friends, Michele and Kamarah, realized that our housing options were extremely limited in Washington DC because of the high property values. In short, we just could not afford a home on a single income, but we really wanted to have a place that was the kids’ home. They raised funds on our behalf, enough for a good down payment that left us with a manageable mortgage payment. The house is fully handicap accessible and the kids did not have to leave the school district that has been so good for them. This was an example of our friends pooling together and doing something big to support us, however we have been touched over and over by small acts of compassion.
What encouragement do you have for parents raising kids with terminal special needs diagnoses?
I wish I could say it gets better, but I don’t think that’s true. What is true is that there are seasons and a time for everything–if the book of Ecclesiastes does not do it for you, then consider the Byrds song, Turn, Turn, Turn. There will be a time for mourning, but there is also a time for celebrating. There will come a time for crying and laughter as well. Don’t pretend the sadness is not there, but never let it take time that doesn’t belong to it. A rule we have with the kids is that whenever we see a Merry-Go-Round, we ride it. They love them, and a quick spin is guaranteed to put a smile on their faces. And mine too, even when I’m low.
How Have Others Helped You?
Have you picked your jaw up off the ground yet, or are you still speechless after reading about the friends this special needs dad and mom team have? Maybe their story has you thinking of ways people have supported your family, too. It doesn’t have to be as big as a house. It can be as small as a card or as tender as a hug. Hearing how others have encouraged you will encourage others, too, so leave a comment in honor of a friend who helped you. And come back tomorrow to learn about Matt’s young adult novel inspired by his children.
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