How to Press On as a Caregiver

How do parents press on when the burden of caring for a child with special needs grows heavy and earthly strength fails? Kimberly Drew explains how she's learned to press on.Guest blogger Kimberly Drew is learning to press on as caring for a beloved baby daughter with special needs takes a toll on mamma’s body and mind.  Today, she explains where she looks for help and encouragement.

Press On

I pulled out of the doctor’s office and geared up for the almost 2 hour drive home. By the time I got home it had been a 6 hour day. Our youngest daughter Ellie was adopted with the knowledge that she would have special needs. Her recent cerebral palsy diagnosis was a big disappointment, but it was also expected. What I didn’t anticipate was the toll that her care was going to take on my mind and body, how hard it would be to Press On.

It’s not that I had forgotten how hard the early years were with our older daughter who has special needs, I had just forgotten what “hard” felt like.

Ellie is 22 months and only 15 pounds and 6 ounces, and she has oral feeding difficulties. Her feeding therapist wants us to wean her off the pacifier–the same pacifier that the NICU team told us required a critical skill she needed to develop before weaning her off the feeding tube. So of course we encouraged her to use the pacifier all the time!

We have had pacifiers in every room of the house, 3 in the crib, many lost, and multiples in the diaper bag at any given time.

But at this stage, the pacifier can become a problem for her feeding issues and speech delays. Despite all the hours of effort, all the frustration, all the labored and intense therapy sessions to develop her reflexes in place for drinking from a bottle, the pacifier now has to go. It’s simply time to move on toward our next goal.

This lesson couldn’t be more appropriate for the difficulty I am currently facing.

Sometimes, not matter how hard you’ve worked at something it’s time to move on. A pastor at a teaching conference spoke about the hardships that Paul went through in his journey as a devoted follower of Jesus.

2 Corinthians 11:23b-27 reads, “I am talking like a madman—with far greater labors, far more imprisonments, with countless beatings, and often near death.  Five times I received at the hands of the Jews the forty lashes less one.  Three times I was beaten with rods. Once I was stoned. Three times I was shipwrecked; a night and a day I was adrift at sea;  on frequent journeys, in danger from rivers, danger from robbers, danger from my own people, danger from Gentiles, danger in the city, danger in the wilderness, danger at sea, danger from false brothers;  in toil and hardship, through many a sleepless night, in hunger and thirst, often without food, in cold and exposure.”

Despite those obstacles, Paul continued to serve, follow, and give his life up for the sake of God’s glory and the Gospel even still. In Ephesians 3:8 he says,  “ Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ.”

With the backdrop of his imprisonments, beatings, shipwrecks, hunger, and public shame Paul looks to Christ for the strength to press on. In Phillipians 3:13-14 he writes, “Brothers, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus.”

If you, like me, are struggling through the difficulties of raising a child with special needs and find yourself discouraged and weary, I encourage you to let go of what is behind, strain forward, and press on. Let’s read and meditate upon Paul’s words until they take root in our hearts.

I love the song, Press On, by the group Selah. I need to hear it today and imagine I’m not alone in that. If you have a few minutes to listen to it, you won’t regret it.

How do you press on when the caregiving burden takes a toll on you? Share what you’ve learned in the comment box below.

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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