There are just so many details to navigate.
Visions of summer vacations are starting to creep into my head. It may only be April, but I am anxious for some breaks and really looking forward to connection opportunities with family.
Planning and preparing for vacations are overwhelming though. Traveling with someone who has disabilities or complex health conditions is complicated. Honestly, that is putting it mildly. I’ve learned some tricks for easing the logistics and emotions over the years. Still, I wrestle every time with my lists and goals, various worries, hopes and dreams, frustration, disappointments, resentment and more.
Life for families impacted by disability and other special needs are often consumed by details. And the need to function with great intention.
Earlier in the winter, we had opportunity to visit my parents in sunny Arizona. Carly’s special dietary needs involved pre-ordering some specialty items through Amazon and having those delivered ahead of time. Other grocery items were ordered online for curbside pickup. I coordinated with grandma for a convenient retrieval shortly before our arrival. Even as my folks headed out the door the day after Christmas to drive south, I remembered to send a box of incontinence supplies with them so we wouldn’t require that extra load on the plane in February.
A couple of months later, we flew with an extra bag filled with more things Carly would need for a comfortable, healthy trip. This included an adapted swim jacket, a couple of toys, medications dosed out for two weeks (plenty of extra in case our return got delayed due to Covid/other) and more.
In the meantime, my mom already keeps a few special items on hand for our almost-annual trips to their winter retreat. The “Carly blanket” is one such example. We do not take for granted the thoughtful investment our extended family makes in caring for Carly’s detailed needs.
This time, the rental house we visited had a pool. This was a wonderful bonus since Covid distancing and Carly’s unusual gastrointestinal issues can be a hindrance to public swimming. The weather was also on the cool side so grandpa could turn up the water temperature for greater comfort. God knew these details even before any of us did. I love to see His gracious hand that way!
There was just one problem with the pool. It was hard to keep Carly away from the underwater steps where she constantly wanted to climb, sit and splash. It had a rough surface, and she had no discernment about what that was doing to her shins.
Within the first few minutes, her legs were bloody raw. And due to Carly’s poor circulation in her limbs, abrasions heal very slowly.
As of today, a full 8 weeks later, those wounds are still healing. Of course, as is par for the course, they have healed more quickly than expected because we’ve learned exactly what brand of lotion is most helpful and how frequently we need to apply it in order to heal them most quickly.
So many details. We are literally swimming in them.
God knows about details. He was hyper in tune with them too. Take a look at a couple of examples:
8 “Have the people of Israel build me a holy sanctuary so I can live among them. 9 You must build this Tabernacle and its furnishings exactly according to the pattern I will show you. 10 “Have the people make an Ark of acacia wood—a sacred chest 45 inches long, 27 inches wide, and 27 inches high. 11 Overlay it inside and outside with pure gold, and run a molding of gold all around it. 12 Cast four gold rings and attach them to its four feet, two rings on each side. 13 Make poles from acacia wood, and overlay them with gold. 14 Insert the poles into the rings at the sides of the Ark to carry it. 15 These carrying poles must stay inside the rings; never remove them. 16 When the Ark is finished, place inside it the stone tablets inscribed with the terms of the covenant, which I will give to you.
13 You made all the delicate, inner parts of my body
and knit me together in my mother’s womb.
14 Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.
1 O Lord, you have examined my heart
and know everything about me.
2 You know when I sit down or stand up.
You know my thoughts even when I’m far away.
3 You see me when I travel
and when I rest at home.
You know everything I do.
4 You know what I am going to say
even before I say it, Lord.
5 You go before me and follow me.
You place your hand of blessing on my head.
6 Such knowledge is too wonderful for me,
too great for me to understand!
God’s attention to detail may have been confusing or felt demanding, at times. It gives me comfort to understand some of His motivations. For example, the reason for the tabernacle details included the nature of a most holy God but also “so I (God) can live among them” (Exodus 25:8).
Scripture itself is woven together in way that clarifies and proves Jesus as the incarnate God. Conservatively, Jesus fulfilled at least 300 prophecies in His earthly ministry.
I also love knowing that God cares about our specific needs, and He doesn’t fault us for being uniquely wired (Psalm 139).
Our lifestyle in the details with Carly may be absurd to people. Some judge our attentiveness to them as overkill, a lack of boundaries, or simply overwhelming. In complete exasperation, my own daughter once referred to us as a high-maintenance family as we prepared to leave for a vacation. I am well aware that we are not always of sound mind. Sleep deprivation weakens both wisdom and willpower. But believe me, some of our decisions make life immeasurably better for Carly and, just as important, easier for us.
We live near the end of our ropes more days than I can say. So, if something is going to make caregiving easier, you’ll probably find me right there!
It is a blessing that I am a detail-oriented person. I’m not just good at managing the minutia. I also get a certain amount of satisfaction out of keeping things well-coordinated. That’s a handy passion for a caregiver.
Every caregiver needs to find and optimize their own unique sweet spots. Details are one of mine.
Nonetheless, we must constantly be proactive while holding plans loosely. The nature of disability and health issues is that things will invariably go wrong or differently than expected. No manner of micro-managing ever plays out exactly as we hope. Still, we’ve gotten pretty darn good at — for better, or for worse.
I’m thankful that God’s mercy has been seen in the healing of pool wounds, forgotten medications, lost toys, even a lost iPad once. His power is made perfect in our weakness (2 Corinthians 12:9).
Despite our ability to ensure that all the details are perfectly managed, and the vacation goes off without hitch, we are making memories. It has always been worth the effort to make family time. Couples time too.
When love is ingrained in the details, there is always a win for everyone.
I am most thankful that God’s reason for details is always about His love. His detail orientation always assures us that He is trustworthy.
God help me — may all of my own attention to details be foremost about love.
The Lord directs the steps of the godly.
He delights in every detail of their lives.
Though they stumble, they will never fall,
for the Lord holds them by the hand.
As a caregiver, I can grow so weary of the countless and consuming nature of all the details! And when I focus my attention on the object of those particulars, fine points, and contingencies, I am vulnerable to making an idol of controlling life instead of living in love.
Lord, help me live in the details while abiding in Love.
Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. She leads a weekly online discussion group welcoming caregivers in families living with disability. Lisa and her husband, Larry, are co-founders of Walk Right In Ministries, a non-profit organization building faith and community with special needs families. They live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome.