Every spring for the last 8 years we have worked with many of the boys medical service providers to schedule occupational therapy, physical therapy, speech therapy, and as many of the routine and yearly specialists visits during the summer break. We have done this to ensure continuity of care, avoid excess missed school, and prevent regression of skills gained through a consistent therapy schedule. During the summers we have had the opportunity to use new and different equipment and tools to help Ashton and Owen make greater gains toward their goals. We have re-arranged work schedules, juggled child care, made hundreds of trips back and forth to appointments, and invested hundreds of hours creating fun/productive therapy sessions to achieve skills- and we've made progress! The proof is in the pudding and we have seen with our own eyes the difference the time we have dedicated to them has made, but time is a tricky friend. We exchange our time to improve their quality of life. We gain life skills, smoother walking patterns, a more sturdy gait, more clearly articulated language, more fine motor control, greater control over their emotions, and gains toward more 'normal' lives. But, no matter how much time we give- we don't get time back and we haven't yet figured out how to get more hours of of a day. It's just not how time works. Time is the most precious commodity of our earthly being.
Over the last year the dial has been turned up on the number of appointments the boys require to keep their health in good shape and as we look ahead to summer 2019- we know it will likely be a challenging one, as Owen is on schedule to have his palate reconstruction/bone graft surgery then. We will need to commit a lot of extra time to preparing for the surgery and for the many followups and cares he will need after the surgery. I know we can't turn back time, but this summer we're going to take some of it back... This summer Shelby and I have made a conscious decision to forgo all summer outpatient services for our boys. We're taking a break and we're taking back our time.
As parents of three (two with complex medical needs) we've become increasingly aware that somewhere in the midst of our demanding schedule our kids have started to grow up. This fall Ashton will be beginning his second year at the middle school, Kiera will be in 4th grade, and Owen will be in 3rd grade. Time is flying by and we need it to slow down. We need time to be a family, so we are clearing the schedules of some of the extra effort and we're committed to adding in more family fun.
I'd be lying if I said I was all 'cool' with this... I feel anxious, guilty, and excited. I feel like I'm letting down all of the special people that work so hard to help our kids achieve their goals- I hope they can understand why such an involved family is taking time off. I feel personally guilty for squandering our time to live in the now and not actively working toward the bigger picture of achieving their goals- what if taking time off results in Ashton having a sloppier gait pattern in the fall? What if Owen doesn't practice saying S as much as he should?! I am full of guilt over those things, but the prospect of just being a family has me filled with enough excitement to counterbalance all of the guilt. I am excited to have three children who are mostly independent, who can articulate their needs, and who still have enough wonder and awe to be amazed by the kitchy-quick-stop-tourist-traps... I am excited to have three kids who love each other (most of the time) and still enjoy playing together and doing kid stuff. I am excited to feel like we can go and enjoy new places and family activities without it being 1000% stressful or feeling hurried/rushed to have a good time. We still have some appointments and specialists we HAVE to see this summer, but we aren't adding more. When we do have to travel to appointments, we are making plans to not make the day about the appointment- it's going to be about the activity we are doing that just happens to be in the same area. THIS summer we are taking full advantage of the spark of childhood our kids still carry and filling our buckets with memories. We have our summer bucket list all planned out, printed out, hung on the fridge... ready, set, go make memories!
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