The Haunting Question

If you have a child with a significant disability, you most likely have asked yourself some form of this question: "What is going to happen to my child after I am gone?" or "Who is going to take care of my child, what is their life going to look like, who is going to love them and make sure their needs are met?"

For me, personally, these questions and many more like them have kept me up at night since Zack was little. I have written many "midnight wills" through swollen eyes and piles of tissues. My husband and I now have had legal wills and "plans" in place for years. And still, I cannot answer those questions that have haunted me for decades. See as we age, we learn more. Our children change. Their needs change, and we understand more.

My husband and I have decided that passing the care of Zack to our youngest son, Dylan, is not the ideal. (Please know that there is NO judgment for those who have made the decision to have their other child(ren) to care for the child with special needs. We all have to make the best decisions we can.) It's not that Dylan doesn't love Zack, he absolutely does. But my thinking has changed over the years as I have learned more.

Top of the list is that the stated divorce rate for parents of children with significant disabilities is around 80%, though some believe it is closer to 87% (see https://www.psychologytoday.com/us/blog/a-better-divorce/202302/divorce-and-special-needs-children ) So the next question is why that number is so much higher than the national average divorce rate of 41%. (see https://nchstats.com/divorce-rates-in-us/ ) If you have a child with signigicant disabilities, you know. Lifelong and chronic family stress, anxiety, isolation, loneliness, are just the beginning of the added stressors on marriages with children with special needs.

So the question is, after learning that, and parenting Zack for 37 years, do I want my son and daughter-in-law to have those same stressors on their marriage and family? No, I do not. I am the parent of two children, not one. I want what is best for BOTH my children. If I have a say so, I do not want my youngest to be the daily caregiver for Zack after I am gone. That said, I do hope and pray that he is a BIG part of Zack's life and future. I hope they are together quite a bit, especially for birthdays, holidays, some weekends...all the fun times and some of the hard times too.

Are there any others that can care for Zack? No, there isn't. And that grieves me, but that is also fuel for the fire to find a viable solution.

So what is the plan? I am so glad you asked. Jeremiah's Promise is partnering with Trevor's Hope https://trevorshope.com/ to provide housing and care solutions for Zack, Trevor (Zack's best friend) and many other adults with disabilities and their families hoping for a safe, full, and happy future for their child.

Will you join us in prayer that God would open doors for this partnership that will provide housing and beyond for adults with IDD. Will you help us spread the word among our community and share the Trevor's Hope and Jeremiah's Promise website? We need others to join us in this endeavor if this is going to fully become a reality. We are not just looking at building housing for adults with IDD, we are looking to build their future. And along the way, have some peace of mind for us parents.

• Sonya Craig, founder of Jeremiah's Hope