Day by day caregiving describes life for parents raising children with special needs and disabilities. It’s also a strategy Kimberly Drew has been using for months as the lack of routine due to the pandemic makes life hard for her daughter Abbey.

During this COVID pandemic, I’ve been unable to achieve structure and routine for our daughter Abbey. In the beginning, we were in “emergency” mode and just winging it. We gave virtual classes and therapies our best go. For the first couple of weeks, Abbey thought they were great. But she regularly grabbed her shoes or backpack and stood by the door. After the first few weeks we saw behavior changes including lack of sleep, increased constipation, and mood swings. She’s never quite recovered from our first lock down. 

Many other parents have tearfully reported that their children are showing regression in skills, aggressive behavior as a result of this lack of routine. To a child with limited cognitive function, it’s not a new routine, it’s a mess. Abbey doesn’t understand why she’s supposed to use the computer when she gets home, why she goes to school on Monday and Tuesday but not on Wednesday. My once happy girl who lit up the room has dimmed in our home. Her mornings are consistently plagued with tantrums. She screams, hits, and drops to the floor. 

We’ve tried just about everything to establish the best routine we can. When school isn’t closed for a COVID exposure or a contact trace, or someone here doesn’t have a runny nose so we’re home for 10 days, we manage to get by.  But as soon as that routine is out the door, so is Abbey’s sense of security. 

We are in day by day caregiving survival mode of living. I’ve received advice from well-meaning relatives, friends, school employees, and therapist about how to manage this problem. 

Join a support group.
Read a book.
Ty this or that.

I hope those who are not having our experience will take heed of our story. We have no emotional energy to join anything. Exhaustion keeps us from doing, reading, or trying things that might be helpful. We are navigating new waters and doing our very best. What we could use are your prayers, compassion, empathy, and for you to drop off off a meal. 

We are clinging to hope. For now, and to other parents engrossed in day by day caregiving, I want you to know that you’re not alone. The best way for us to get by is summed up in the hymn Day by Day written in 1865 by Carolina Sandell.

 Day by day, and with each passing moment,
Strength I find to meet my trials here;
Trusting in my Father’s wise bestowment,
I’ve no cause for worry or for fear.

He, whose heart is kind beyond all measure,
Gives unto each day what He deems best,
Lovingly its part of pain and pleasure,
Mingling toil with peace and rest.

Every day the Lord Himself is near me,
With a special mercy for each hour;
All my cares He fain would bear and cheer me,
He whose name is Counsellor and Pow’r.

The protection of His child and treasure
Is a charge that on Himself He laid;
“As thy days, thy strength shall be in measure,”
This the pledge to me He made.

Help me then, in every tribulation,
So to trust Thy promises, O Lord,
That I lose not faith’s sweet consolation,
Offered me within Thy holy Word.

Help me, Lord, when toil and trouble meeting,
E’er to take, as from a father’s hand,
One by one, the days, the moments fleeting,
Till with Christ the Lord I stand.

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