“…it’s hard. It’s not just transitioning to a wheelchair; it is transitioning into a whole new way of life.”
The GiggleHut Mom
I love beats. There’s nothing like a good song that moves you, keeps your head nodding, and lyrics that sing straight to your heart. But when we think of beats in terms of the rhythm and pace of your life, it takes on a whole new meaning.
This last year struck a new chord with the Giggle Hut family. My kids had a fun family outing with their dad’s family awhile back and were so happy when telling me about it. The previous year they started at a whole new middle school and have been enjoying it. And of course, we’ve jumped right back into those doctor’s and therapy appointments.
The bittersweet part of last year was that with all the activities, I’m beginning to see the recovery time for Jonathan take even longer. Its saddening and hard to stomach for some of us because we’re used to seeing him so lively and running around. During Jonathan’s recovery period (after long/late night activities) it’s common to see him struggle getting to the restroom and keeping himself in a standing position, walking up a couple steps, and collapsing with every quick movement. These recovery times vary depending on the activity and last from a few days to a couple weeks. With proper rest, sleep, and nutrition helps to expedite his recovery. Otherwise, there’s quite a bit of crawling, dragging, huffing-and-puffing, whining, crying, lifting and carrying. It’s been a difficult time watching him struggle. For those who do not have family with muscular dystrophy, this is called the “transitional period.” We’re in-between full mobility and wheelchair dependence. And it’s hard. It’s not just transitioning to a wheelchair; it is transitioning into a whole new way of life. I find myself having to be more involved with his daily activities than before, I have to drop everything to help him as though he was an infant. It is sad to say, but it’s the truth. It’s a regular thing to have to bathe my 14-year-old, help in the restroom, or pick up this 100lb teenager off the floor because he had a misstep. This has never been his fault and nor will it ever be. But it sure is hard to live out.
This means the beat and tempo of our lives must change. The time signature must slow down, and we must adjust ourselves accordingly. For many who know me, they can confirm I’m always on-the-go. Always. Knocking out “two-Birds-With-One-Stone” is my daily thing. I strive to make this possible especially if it makes life a little bit easier for me in the long run. As a single parent this is very important. With that said, this last 2 years transitioning to a slow pace has been exceptionally difficult for me, moving from the fast lane to a grinding halt has been extremely frustrating and upsetting. What I come to realize is that I lived this last 14 years with very little rest, like a boulder rolling downhill, it’s difficult slowing the momentum physically and mentally. Being undone has not been easy, and I’ve struggled to smoothly slow down my tempo.
Murmurs of the Heart
My revelation, thoughts, self-discovery, or insight from that still small voice.
Tempo and beat. In music terminology a tempo is a measurement for speed that is made up of beats and dictates the pace for the entire song. But in terms of life, it could be the speed and pace you live your life. Nowadays most of us run our daily/weekly schedules while on empty, but the only one that sets this expectation is ourselves. Yes, that’s right, we set the expectation ourselves. Slowing ourselves down also means we can give ourselves a little more grace. I’m a firm believer that if our expectations of ourselves is more than what God expects than we’re asking too much. Let loose this ungodly expectation, and set realistic expectations and goals, and for goodness’ sake account for rest and prayer! This is so crucial for single parents, and of course family and friends who act as caregivers to someone that’s elderly or has a disability. It’s hard. Period. We need to slow down to account for their lack. Bearing each other’s weight is a complete demonstration of unconditional love. It is selfless, sometimes difficult and heartbreaking. So afford yourself some grace and a pat on the back because it is well deserved. I know that I need to. “Be completely humble and gentle; be patient, bearing with one another in love.”
Ephesians 4:2 NIV
Transition at all costs. Don’t treat a rest as the finale. This means don’t allow yourself to camp-out and stagnate where it was only meant to be a temporary pause. At this point for many its so much easier to stew and simmer in emotions and in your past than press in and press forward. There is a difference between resting as God intended and leaving yourself in limbo. Rely on God to tell you because, “There is a time for everything, and a season for every activity under the heavens.”
Ecclesiastes 3:1 NIV
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