A Caregiver’s “Note to Self”

We were sequestered for thirty-six hours.

My husband and I were the only two people in the room. They sent food to our room which was the only interaction we had with another human being. This went on for T H I R T Y – S I X hours!

I am happy to tell you it did not feel like an eternity. In fact, it was HEAVENLY!


Why was being alone with my husband without interruption for thirty-six hours heavenly? Because I haven’t had that much uninterrupted time in more than two decades!

My son with disabilities was born twenty-two years ago, and I’ve never gone more than 24 hours without hearing his voice. I have been thoroughly committed to his care. That might sound almost valiant to many, but those who are wiser than I am know that too much time doing anything without a break is a recipe for disaster.


ABSOLUTELY! Let’s go back a few years. When Jon was born, one in TEN THOUSAND kids was diagnosed with autism. As years passed, Jon’s diagnostic profile got longer and longer. That meant I had to be more and more present with him.

You Matter

If you’re a caregiver, you know the truth in that. But no matter how utterly exhausted you feel or how inconsequential you seem, YOU are a treasure! YOU MATTER!

  • YOU cannot be replicated.
  • YOU have a purpose.
  • YOU are needed in this world—and not just for your child’s or loved one’s survival. YOU are needed because God has a purpose for YOUR life.
  • YOU have unique gifts that God longs to use.
  • YOU mean the world to more than one or two people you provide care for.
  • YOU are not defined by what you do but by WHO YOU ARE because YOU are created in the image of GOD.

Nevertheless, carrying so much responsibility is excruciatingly hard. We can get off track. I lost myself somewhere along the way. I will tell you it happens silently, between the lines of daily life. There’s no condemnation here; we need to never forget to cling to God’s grace and truth.

I’ve written before about the ol’ “airplane oxygen mask” thing . . . that you have to put on your own mask first before you help others put on theirs. You and I have heard flight attendants announce that a bazillion times. Even so, it goes against my instincts . . . which would be to grab that dangling yellow thing and first snap it onto those I love—those who cannot reach it, grab it, or put it on themselves. Then, once everyone else is safe, I’d put mine on. I’ll fight that human response until my last breath.

God’s Got This

Most of what God calls us to requires thought . . . not reacting to life but changing the way we think about life, especially what we think about the One who is really in charge. By the way, the One in charge is not you and it’s not me. I know, it’s tough to admit we’re not in charge but until we get that squared away we are not living as God longs for us to live.

So what does it mean to live as God wants us to live? I’m beginning to figure that out. I know, I’m a bit slow, but if these words add more value to your days, please read carefully about what I’m learning. I have responsibilities as a wife, mother, daughter, sister, caregiver, friend, employee . . . but first and foremost, I belong to Jesus who made me. And so do you. As you juggle your responsibilities and needs, I want to remind you of your value as a child of God made like no one else on earth. When you are flooded with daily tasks and feel overwhelmed by what has been entrusted to you, pause and remember these truths:

  • Your life was planned before time, and it’s no mistake. Before time began, God had a purpose for your life. There is no other person on earth like you. Often, when we spend our energy on others, we quickly forget our value and purpose. No person is a mistake, has less value, is more or less important; YOU are God’s handiwork and this world needs YOU (Psalm 139).
  • Your days are numbered. Ecclesiastes 3 reminds us there is a time and place for all things. God is in charge; we are not. Our days will be marked by good and bad, joy and sorrow, upheaval and peace, laughter and tears. You and I are essential in God’s eyes, but we are not in charge of the days He has numbered for each person.
  • There is a difference between knowledge and wisdom. You and I may know God’s Word, His calling on our lives, His sovereign shepherding over all things; and these are good to know. But if we are not wise, we will mishandle what He has entrusted to us. Proverbs 3 tells us the benefits of wisdom. It is one thing to know truth, but we must live out the truth in wisdom. The choice belongs to each person.

 Being “sequestered” in a hotel for thirty-six hours with my husband for the sole purpose of resting gave me time to ponder if I was living out of knowledge or wisdom. It’s wise to examine that in the days ahead. I journaled while we were away. It had been several years since I put pen to paper and spilled my heart. I leave you with the thoughts I had upon our return.

Let Me Hear from You

I challenge you to pray the following prayer in the days ahead, adapting it to your own situation in life. And remember: God’s got you. Will you give all of yourself to Him?

Lord, show me what I need to change in order to fulfill Your plan for my life. Sometimes I feel too old, too tired, too _______________ to add value and meaning to this world. But my time is in Your hands. I don’t know what is ahead for me, for my family, for my son who cannot live on his own. Help me be wise in the days ahead, to do what You call me to do, to release what You call me to release. You are calling me to be present, to experience each moment because not another is promised.

Help me separate my responsibilities from being in relationship with You. From You alone am I able to fulfill what You have allowed. Apart from You, I can do so little. Thank You for Your patience, Your peace that surpasses all understanding, Your grace that refreshes my soul. Lord, my son’s days are numbered by YOU, not by me. Help me to honor You as I care for him, yet not forget that You made me for a purpose on this earth. Show me Your direction in the minutes and hours, days and weeks ahead.


You can leave a comment by clicking here.

Want more? Subscribe to Reframing Ministries for content delivered right to your inbox full of help, hope, healing, and humor for people, just like you and me, walking through pain.