We’re going to a party Friday evening! Our 24-year-old niece Lily will be moving into her new home soon, so the family is gathering there for a housewarming. Our pastor is coming to bless the house, and we plan to celebrate with food and music. Although it might not seem like a big deal to some, it’s actually quite huge.

Who could have seen this day coming? Is Lily excited about the move? If she is, she doesn’t let on. Is she frightened or nervous about it? Who knows?

Over the years she’s given some hints that she wants to be more independent, but now that the time is here, how does she really feel?

The thing is, our niece has many developmental challenges including autism, limited speech ability, and intellectual disability. She will never be able to live on her own. She will always be under the constant care of personal assistants. Those caregivers will take over all the responsibilities her parents have managed her whole life. They will provide her food, help her bathe and dress, manage medical and dental appointments and haircuts, handle all her transportation, and keep her safe.

Lily’s best life

Lily’s parents have devoted their whole lives to helping her live her best life. She is happy and curious and loves engaging with people. They’ve developed routines that generally work well and keep all family members happy. So, why would they ever want to change things?

What they have come to accept is that, chances are, their daughter will outlive them. And with that knowledge they realize how important it is that systems for her lifelong care are in place before it becomes a crisis situation.

They’ve worked diligently these last couple years preparing a place where Lily will likely live out the rest of her life. And now they are preparing to hand the reins off to others.

How can they even consider doing that? How do they entrust the wellbeing of their beloved daughter to a group of hired assistants? Releasing her care to them requires they have absolute trust in these people. Is that even a possibility? Fears, doubts, and worries have filled their minds since they first considered this transition.

Still, they’ve pressed on taking one small brave step at a time.

Letting go of control

This change is the beginning of a whole new life for Lily and for her parents, too. There’s no way to predict how it will play out for any of them. There have been so many bumps along the way to get this point, and there are bound to be more. There will be homesickness, I’m sure, in both households. Worries and tears will certainly be a part of it.

As much as we humans always try to control situations, the truth is, we are never really in control. Any notion that we’re in charge is just an illusion. It seems the best we can do is try to figure out what we believe the next right step is. Then we have to muster the courage to move forward trusting that decision.

That is what Lily’s parents have done. There is no crystal ball, so they’ve prepared what they think is the best proposal to ensure that their daughter will be happy and well-cared for.

Although feelings of uncertainty and concern remain, their hard work is easing at last. They’ve planned carefully, and they’ve stepped out in faith. And now they do the only thing they know how to do. They offer thanks for the Divine assistance that’s carried them to this point, and they trust in that same guidance to continue supporting them and their precious daughter.

A few more thoughts

• Even though this is a story of our family, it reflects similar stories of untold numbers of others caring for their loved ones. There are married people caring for their spouses, parents caring for their children, and children caring for their parents. Those needing care are challenged by physical needs, dementia, developmental needs, mental health issues, and addictions. All of these people are dealing regularly with heartache and unimaginable difficulties.
• Not everyone is able to advocate on behalf of their loved one. Not everyone can make provisions for their care.
• Maybe there are things we can do to help. Maybe we can all become more aware of those in need. Maybe we can find ways to offer love and support to people facing challenges and their caregivers too. All we have to do is turn toward them and trust in our next best step.