A Mis Mom’s Journey
by Diane Carpenter
When our daughter Beth was diagnosed with autism at the age of 2 ½ and the severity of her disability became apparent, the never-ending worry began of who would take care of her when I no longer could.
As she got older, the realization that she would need to live in a residential facility someday was too heart breaking to contemplate, so it got pushed back to the “I’ll think about that later” part of my brain.
23 years ago when Beth was 14, Rob, a friend of ours whose daughter lives at Misericordia, told us all about Mis. He and his wife took us for lunch at the Greenhouse Inn and arranged for us to go on a tour to see what Mis was all about. We were quite impressed. I picked up an application which sat on my desk for 6 years because I wasn’t mentally ready to fill it out. Rob then gently reminded us that we should at least get the application in. So, I called Mis and got an updated one, and it sat on my desk for another 6 years.
Beth was 26 years old at this point, and a dear friend of mine (not connected to Misericordia at all) convinced me that it was time to get it done, so I finally filled out and sent in the application.
After many visits and sleepovers at Mis to see how she’d do, Beth at the age of 31 got her spot. I was happy and sad at the same time, worried about how Beth would do knowing it would be a difficult transition for her. She doesn’t talk and understands very little language, so there’s no explaining anything to her to prepare her for such a big life change.
And this is how I’ve survived my worries. After I’d filled out the application and we had our first meeting with Misericordia as part of the application process, I began volunteering. I did the usual Family Fest and Candy Days, and I volunteered at Misericordia’s Twice Blest thrift shop. I volunteered at the thrift shop with parents of kids who live at Mis. Learning about Mis through their stories every Wednesday and second Saturdays for many years helped me see that they had gone through the same worrying that I was. They survived it and their kids were doing fine at Mis, and Beth would too.
Once Beth got her placement at Mis, my volunteering expanded into other areas as a part of the Misericordia Family Association. I’d once thought I would have so much free time after Beth got into Mis, that I wouldn’t know what to do with myself. Sue, one of my Mis mom friends who is a volunteer extraordinaire, chuckled at that and said that’s not going to be a problem for you (having too much free time). And she was right!
Once the Misericordia Family Association became aware that David (my husband) and I brought IT skills with us, David’s being exceptional and mine old and rusty but I’m a quick learner, we got put to work. David is a software architect and has been in the IT Biz for 40+ years. I started in IT out of college and worked for 5 years until my career got put on hold when Beth was born. I always planned to go back to work when our kids were older, but the challenges of caring for someone with autism and no sleep made that impossible for me.
So, I thought this old dog could hopefully learn some new tricks and put that computer science degree from 1979 to good use after being on pause for decades. David and I were asked to join the MFA Communications Committee, and as part of that we rebuilt the MFA-SIBS website, and we continue to manage its content. We’ve also chaired and assisted several MFA Benefit committees that require technical skills, and I keep learning new ones as needed. “They” say keeping your brain active and learning is a good thing to do as you age, so I’ve got that going for me. Ha!
The point of all of this is that the never-ending worry of how Beth will survive when I am unable to be there for her someday still haunts me. Being busy, busy, busy volunteering for Misericordia to help continue its success and to be Beth’s happy home when I am gone helps to quiet my worries and distracts me from them.
Being a part of the Misericordia family, a group of people living similar experiences, is a comfortable inclusive feeling. A feeling much different from before when I felt like I was living a life so vastly different than most in the community at large. And all the wonderful new friends I’ve made while volunteering is a big plus!
Best of all is that Beth has been living at Misericordia for 6 years now and she is doing very well.
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