Have you seen my Guardian Angel? I’ve got some things I want to say, like how did you miss that landslide headed my way?
|Disappear by Good Enough|
Although I’m entirely partial to my wonderful husband’s songs, this one does pretty accurately describe my state of mind at the moment. After living in the special needs world for 16 years, I guess I kinda thought I was immune to the hidden landslides anymore. And yet here we are; just as I learned to dance in the rain, the rain turned to a lightning storm that has me dashing and dodging just to try to stay ahead of the next hit.
In some ways, I feel like I did back on the day that I heard my baby probably wouldn’t live, and that the best thing for me to do was to go home and plan a funeral. Or maybe the day I heard that the narrow window of opportunity for making gains on the autism that had rendered my child language-less was quickly closing, and that resources simply weren’t available. Or maybe the day that I heard one surgery was going to be months and months of surgeries, casts, and wheelchairs with only a hope that my child would walk again. How about that day when I accidentally read the medical report and diagnosis of epilepsy before the doctor’s office had a chance to call? Or the moment when I watched one of my babies play by themselves on the playground because no one else existed in their world. Or maybe…
In my naivete, I thought we would overcome challenges. And in many many regards we did. That death sentence has been proven wrong year after year, and the language that wasn’t supposed to come is a nonstop litany of random facts, stories, and gamer talk. That little one in a wheelchair hasn’t stopped running and is now even learning to ride a bike. Overcoming the challenges. And somehow there has been comfort in being able to look back and reflect on “how far we’ve come,” and unintentionally or otherwise envision a finish line after which we crossed, life got easier or at least less complicated.
I’m glad, though, that I didn’t know then that the needs and challenges wouldn’t go away; instead they would grow and change with each child at each new step in their journey. That child who passed the age of 5 against all medical odds would one day be facing not only a new set of life threatening conditions, but would also have the desire to plan for a life of friends, relationships, college, and jobs. My challenge is now figuring out how to balance the need to dream with the reality of the new tests results rolling in. Not to mention learning how to address concerns when Google becomes as much a source of information about scary sounding diseases as I do.
That child who was so content to play alone on the playground would grow into a child who desperately needs and wants relationships. That child has made so many gains, but those gains have come with an understanding of how they are different than others and a desperate desire to be like those others at the same time. Awareness has brought new challenges of anxiety and heartbreak; pain that is no longer eased by a line of cars or a familiar script. My challenge is try to figure out if socio-emotional needs or academic needs are more important because we aren’t in a situation where both can be met simultaneously with any of the organizations available to us right now.
As much as it dates me, I have always loved the movie Sweet Home Alabama. That scene where Melanie in her wedding dress goes out on the beach to find Jake who is placing lightning rods in order to create more of his lightning sand sculptures during the storm, yea that scene gives me the warm fuzzies every time. All the risks of being out in that storm, just for the chance at love and beautiful glass. I don’t really know if lightning and sand make glass (and I’d really appreciate those that know the truth, not tell me), but I guess that’s how I see this current landslide my kids and I are dodging. Without the ugly, we can’t ever really appreciate the beautiful. Without the heart stopping moments and gut wrenching tears we can’t truly understand the calm that can occasionally appear in our hearts, nor the happiness that is around us.
I’ve always said that I am a planner, but maybe life happens when you are waiting for the perfect time for the perfect plans. I have no idea what this year holds for my little family as we continue to navigate our challenges and open our hearts and home to another little person who has needs and wants that we will have to figure out. Maybe when you spend so much time dancing in the rain, it’s only natural that a landslide is going to hit every once in awhile.