By Mike Molettiere
Let’s be honest. If you are reading this article, you’ve been there. At some point in your life or the life of your child you had to stop pretending that everything was “normal” and adjust how you went about your day and your life. It’s not that you wanted to, but you simply had to adjust or you or your family wouldn’t survive another week. Whether you are just coming to this realization or you’ve known this for years, we all have the need to adjust our life expectations.
For me and my family, we’ve certainly had our fair share. Things that aren’t simple but in our life are easier to figure out like which school we should send Josiah to or which room in the house he will get are not decisions that come with a magic wand to make it all better right away. Yes, we’ve made those decisions, but they have come with needing to move and needing to remodel most of our house in order to accommodate him. The decision was easy to make but the follow through is much more difficult. That’s not to mention other decisions like who do we want to take care of him if we happen to not be around or how do I stand up for him when people around him seem content to just let him slide through life, or which vehicle is the best for us to have with him.
Speaking of a vehicle, I grew up and got married thinking that a minivan would be AWESOME to drive. It meant that I had a big family, and we needed the space to fit everyone. Well, the minivan idea went out the window after having our second child. We simply didn’t have the space to fit all of Josiah’s treatment machines and stuff that he needs to bring when we travel. So, we went bigger to a Nissan NV van. The van has been great for us, and our expectation was that this would be big enough for us and be a great fit for Josiah.
As you can guess, this isn’t working for us either. At age 13, Josiah is getting too heavy for us to lift in and out of the special swivel seat we had installed for him, not to mention his wheelchair is not meant to be lifted in and out of the back of the van. So now our next vehicle will be a Ford E-350 “skoolie” that we are having completely customized to our needs. This has a lift in it and the space where he can remain in his wheelchair. Never in my wildest dreams did I ever think I would be driving one of these vehicles, but we have needed to adjust our expectations as Josiah has grown and gotten older. If you’re interested in seeing how Fiona turns out (yes, the vehicle has a name), come to conference in July!
I know we could spend hours talking about and writing about the expectations you have needed to adjust with yourself or your child. This organization is a safe place where you don’t have to explain all of the expectations you have needed to make because we all get it. Conference is a great place to share with other people who are going through the same things you are.
Here’s the one thing I’d like you to know: whatever you need to do for yourself or your child, no matter how “ridiculous” to the world it might seem: do it. This skoolie will be sure to get some stares and people wondering what kind of family we are, but guess what? We don’t care because we are doing what is best for Josiah and our family. Remodeling an entire house might seem ridiculous to some, but it’s what we need to do for our family. Moving to an entirely different state, not backing down when teachers aren’t giving their best effort or questioning a doctor who doesn’t quite understand what your child is going through might all seem like not the right thing to do. But it’s vitally important to you or your child to take a stand when needed, no matter how silly or uncomfortable it might seem.
One last thing…you are doing an amazing job. Most people wouldn’t be able to adjust their expectations like we’ve had to so don’t get down on yourself. Keep pushing forward. Use the new year to get a fresh start, a clean slate and keep up the great work.
Mike Molettiere is a pastor who serves adults with disabilities. He lives in Iowa with his wife, Lisa, and four kids: Josiah, Levi, Stella and Ethan. Josiah has complete agenesis of the corpus callosum and is severely impacted in development and functioning. Mike is on the NODCC Board of Directors and volunteers as the Chair of the Communications Committee. He is passionate about advocating for those who cannot advocate for themselves.