Living One Day at a Time: Special Needs Parenting without Plans

I have always been a planner—from when I was very small, an 11-year-old, to now as a mama of a toddler with a rare genetic condition. A planner who likes crossing every t and dotting every i. I like having a to-do list, a goal list, and even a next-year list. I always thought this was a good thing, and I never thought about how painful it could be one day.

When Planning Meets Reality

Paigey has a disorder in which her symptoms come episodically. She also has a disorder where natural history doesn’t really help—other people’s stories don’t help either. She could walk, or not. She may be able to read, or she may not even be able to pick up a pencil. She could sometimes walk, and sometimes not. She could have seizures all day. She could end up in an assisted living home. The hardest possibility, though, is that she may not be here to make plans with.

Everyone has this reality. Death happens. Accidents happen. Life-changing events knock your socks off. Your life can change in an instant, and your plans come crashing down. Our life is a vapor, as the Holy Spirit stated through James. We are not promised tomorrow—we are barely promised today.

Living in the Tension of Today and Tomorrow

It’s easy, in a “normal” life, to forget these facts. Typically, it’s when you’re sitting at a funeral that you remember. But for me, I think about it almost every day. Will this be my last smile? Will this be the last time she understands? How does planning work in our life?

The easy answer is this: we really don’t. My husband and I, once Paige was born, stopped making plans far in advance. Gone are the days where we plan who goes where on holidays, or when our next vacation will be. We barely think about what month it is, or when Paige’s next milestone will be. Our life is limited to one week, and sometimes one day, at a time.

Here are some things I’ve learned on this journey of “throwing future plans out the window.”

Make Acceptance a Part of Life

One way it has been easier for me to give up planning is by inserting the worst-case scenario in order to stop my mind from running. This can be hard for people—or even depressing—but for me it is simply humbling. It takes away stress and worry. It shows me what to be grateful for.

So if I find myself worrying about three months from now—who will be where, how I will do this or that—I stop myself by realizing the following: Paige may have a severe event, and our life as we know it will turn upside down once again. I may be planning a funeral in December, not a birthday.

I say it bluntly because that is the only thing that humbles me. This is called acceptance. Acceptance does not equal not caring. It doesn’t mean I don’t catch my breath and my heart doesn’t stop as soon as the thought crosses my mind. Yet, more importantly, it reminds me that my daughter is fragile, her life is a vapor, and so is mine. Why waste today thinking of tomorrow?

Use Your Planning Energy for Today

I want to know what kind of house we’ll be in—I want to imagine Paige walking across a one-story house instead of carrying her up and down stairs. I want to think about when she’ll start school, or when she can play with her cousins. I love imagining if she’ll have a sibling one day, or what Teddy will be like when he’s older. My mind goes all sorts of places—but when I think of the worst, and I realize I don’t have tomorrow, it helps me to do the following:

Make a to-do list for just this week. Separate it by day, so I can just focus on one day at a time.

Don’t look at my planner more than once a day—stick to my daily to-do list instead of overwhelming myself with everything waiting ahead.

Keep my priority. (Yes, singular—there’s no such thing as “priorities.”) The one most important thing in my life is my servitude to God and what I do in my life for Him. My life is His, so what am I doing today?

Sidenote: this one is REALLY hard to do if I am worried about tomorrow, which I often am. But Jesus had a point when He said don’t borrow trouble from tomorrow.

Don’t Idolize the Future

The future is something that can easily hold false promise if I’m not careful. Like I said before, I get caught up wishing and dreaming, setting expectations that can easily be broken. Thinking that “once we move to Houston…” this or that will happen. Or now, “Once we live in a one-story house…” or “Once we get this DME equipment…”

Those thoughts and feelings are a thief. They are from the devil, and they breed discontentment. My life is not a product of material things—it is a product of eternal things. I can have just as much contentment now as I would if I had this or that. God is the Creator of good, and He has given me abundantly.

Avoid Conversations About Planning

This is one of the hardest ones for me since I get easily caught up in mindless conversations like, “So when you come here (in two months) we can do this or that,” or, “When we get a new house, I was thinking…” I could spend several minutes every day musing and pondering about what time we’ll do this or that.

But those conversations take me away from my goal and mission for today. Tomorrow, Paige may not be breathing. So why spend time today thinking of next week, or the week after? Simply change the conversation, and speak of something better. My goal is to insert more eternal conversations—spiritual encouragement.

It Takes Practice to Not Make Plans

As I’m writing this, I’m realizing how much I need to take my own advice. I am good at thinking of worst-case scenarios, but I have trouble catching myself when I stress about the next day. It is an ongoing battle—one we are all part of.

But writing this was an encouragement to me, so I hope it is for you. If you are a parent to a medically fragile child, remember to simply love today—don’t worry about tomorrow. If you’re not a parent, you can take the same advice. And God will give all of us grace.