Let's say you think you have passing grades in Caregiving 101. Your self-care is fairly consistent and you have a good idea of how to get back on track when things inevitably veer off course. High five, friend. That's a big deal.
BUT. You're not quite caught up yet. Because when you're caring for someone for the long haul, you can't do it well without thinking hard about priorities.
I like to call it The Big Picture. It's a vision for your life and your family's life together - a vision you can see better when you take a big step back. The Big Picture requires the knowledge you picked up in Caregiving 101. What is important to you and your family members? What are your personalities? What do you want to make time for every day? Every year? What would you like your child's experience of childhood to be like?
Now look, I realize that these can feel like very loaded questions when you're living in the land of developmental disabilities and/or medical complexities. For me, the reaction goes something like this: Sure, I would LIKE for Collin's childhood to not include an endless parade of therapies and medical appointments and social stress. But I don't have that choice, do I? I encourage you, though, not to stop that line of thinking, but to push it further. WHY do I want those particular things for Collin? Because I want his childhood to be happy and carefree, full of free time and adventures. Why?
I want him to be a kid, not just a patient or a client. Now we're getting somewhere. That sounds like a Big Picture.
How does having this kind of vision impact your life as a caregiver? Well, let's take the example we just explored. Part of my family's Big Picture is that Collin have a full childhood with lots of opportunities to just be a kid. So, when the opportunity for a new kind of therapy arises, I have a metric against which to measure the pros and cons of the opportunity. Will this therapy enhance Collin's experience of his childhood? How so? In what ways might it detract?
Don't forget: your Big Picture includes everyone in your family, not just the person receiving extra care. Because a healthy family must function as a unit, everyone's needs are important. Does this mean you don't have to take your child to a doctor's appointment because you're tired? Of course not. But it also doesn't mean you should set aside your passions so you can do at-home therapy with him every waking moment.
The alternative to determining your Big Picture is being run ragged by other people's expectations. There will always be someone who thinks they know what's best for your child, how to fix things. But ultimately, you're not trying to fix anything. You're trying to live a life. And any specialist, regardless of expertise, lacks the one piece of information vital to truly making the best decision for your child: they cannot see the Big Picture.
Only you can see the Big Picture for your child and your family. Armed with the strength and creativity and energy that come from self-care, you can live out that Big Picture day by day. And that is real caregiving.