On Rocking the Boat

Many parents with children who suffer from hidden disabilities struggle with allowing their children to grow…helping their children spread their wings, try new things, and even watching their children occasionally fail and learn new lessons as they venture into adulthood.

Not so this wife. My husband’s disabilities are hidden, but his seizures are not. He can stretch his wings…but if he takes on too much responsibility or attempts too many new things, we experience the very real consequence that he may have a seizure, thus incurring more damage to his already fragile brain.

This week I will be traveling for work. My husband will be forced to spread his wings as he parents alone for five days, juggling the activities and emotions of an extremely active elementary school daughter, our people-pleasing middle school son, and our emotional daughter in high school. I will be on the sunny beaches of Marco Island, Florida, balancing work, enjoyment, and trying to manage my family from afar.

I am trying not to “borrow trouble,” as I’ve heard many people refer to worrying. I am trying to be thankful that I can take such a luxurious trip with coworkers I genuinely like. But I know that I am worried. I know that I fear.

During the last few trips I’ve taken, which have been few and far between, I’ve been acutely aware of how much my  husband relies on me. This reliance is not a burden or a weight of which I’m often aware; it’s our way of making our marriage work in the midst of hidden disabilities. My presence, even when I don’t get out of bed, is enough to help provide Ben with a comfort and security he lacks when I am gone. I am a grounding force in his life. My husband suffers from severe memory loss and loss of executive function, so I serve as both the collective memory for our family and as the planning queen (can that be a new title? Do you think Abba will sing a song about me?). When I am gone, he feels my absence acutely. When I am around, I am like a computer program that is running in the background…not easily visible, but active and ready should a need occur. I provide my husband a sense of stability and security on a daily basis. My leaving for five days stirs up great unease in my heart.

I am trying to trust God. I recently read this in Streams in the Desert, one of my favorite devotional books:

The secret of living in perfect peace amid the hectic pace of daily life is one well worth knowing. What good has worrying ever accomplished? It has never made anyone stronger, helped anyone do God’s will, or provided for anyone a way of escape out of their anxiety or confusion. Worry only destroys the effectiveness of lives that would otherwise be useful and beautiful.

My prayer is that during this trip, while my concerns are very real and the disabilities may not always be hidden, I can trust God and rest in Him. Things at home will not go perfectly. The routines Ben and I have established to manage his disability may be shaken. But God is still in control. He is still the supreme healer and lover of our souls, and anything negative that happens has come through His perfect plan.

I will be meditating on Philippians 4:6 – 7: Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Won’t you pray this with me? For all of us living with family members with hidden disabilities. Amen.


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