Isaiah goes in for a “routine” MRI this morning. When a child has spina bifida and hydrocephalus like he does, certain things become “routine” all of the time. But what does this word mean?
If parents of a child without special needs were told by a doctor that their child needed an MRI, would they call it “routine”? We catheterize Isaiah five times a day, is that “routine?” Every Monday, Wednesday and Friday my wife has to set Isaiah on a toilet for an hour and insert a catheter into a stoma in his stomach to perform an ante-grade enema. Is that “routine”? He can’t feel his legs, what about that?
There’s a lot of other things in our “routine.” There are morning meds and evening meds, stretching him before putting on his leg braces, lifting him from bed to chair, chair to couch, couch to chair. There’s looking for signs of his facial twitch to monitor for increased seizure activity, going every week for physical, occupational and speech therapy, setting up neurology, urology, neurosurgery, and orthopedic appointments. There’s calling the catheter supply company to figure out why the catheters haven’t come in yet, calling the Oregon Healthy Kids office to find out when and if such-and-such is going to be approved, calling the doctor’s office to schedule or re-schedule an appointment/procedure because it conflicts with something else. There’s planning our lives around the extension surgery he must have every six months in order to lengthen the rods in his back. There’s the constant processing in the brain of all of these other “need to haves” that the doctor tells you about. “When he’s about 10 he’ll need to have…when he’s about 15 he’ll need to have…when he’s an adult he’ll need to have…” etc.
There are constant considerations we must make like when to travel, and where to travel. Is there access to good medical care? Can we get the supplies we need. Does it conflict with an appointment? Or how long to travel. If Isaiah sits too long in a car seat it can cause him stiffness or pressure sores. Are there any step-downs in a house or building where we’re going? He doesn’t perceive those well and might roll his wheelchair off and fall. Are his legs secure? Since he has no feeling in them, and one of them has spasticity and the tendency to pop up, he might get it caught in something and could potentially break it without knowing it.
My dear sweet wife, as Isaiah’s day-to-day caretaker, handles most of this, and for our family this is “routine.” We don’t begrudge it or despise it, and I hope it doesn’t sound like I’m complaining. It’s not this or that, it’s just “routine” and we live in it. We don’t know any differently.
“Routine” is what we do. It is that course and path of life that God has given us, the calling to which he has called us and equipped us. The particular “routine” that we face is oftentimes a difficult one, one that we wouldn’t have chosen, but it is also filled with immense joy and laughter, and we wouldn’t trade our experiences for anything. God has called us to this and not only called us but also equipped us with the ability to do it by his grace and strength. Sometimes our “routine” presses us, but it does not “crush” us.
“We are afflicted in every way, but not crushed; perplexed, but not driven to despair;” (2 Corinthians 4:8)