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?
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| 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.
