When I think about the past year, sometimes I feel a sting.
Like I shouldn’t still be thinking
about the past year. I have this idea in my head that I should have moved on by
now. That people don’t want to hear me talk about it anymore, and like it is
now “old news”. I feel a guilt associated with my bad days, as if having bad
days means I’m ungrateful and weak. I feel like the fact I have continued to have some bad days means all the strength I felt I had before wasn’t real. I remind myself that
things are much worse for so many people, and that things aren’t that bad for me.
This
cycle of pushing myself to find strength and beating myself up for losing it
has continued for some time now. This week I decided I needed to either go back
and better deal with the situation, or I needed to find a way to reprocess my
current state of being. The more thought I have put into it the more I realized
that it’s entirely possible that there is a distinct lack of talk about “life
after the storm” as a society.
I’ve noticed that when someone is struggling people tend to
instinctively tell them it will be okay. We point out how strong they are, we
admire their ability to navigate their storm, and we praise their faith. We do
not admire the aftermath, I’m not sure we even like to think about it. We want
to hear that they triumphed. We want the happy ending tied up with a bow, and
if the one suffering doesn’t see their happy ending we feel the need to point
out how happy things are for them, or even how much less happy someone else’s
situation is. There is no appreciation for the process.
I feel like I have had the concept of “everything will be
okay” beaten into me. Everywhere I turned for relief I received the reminder
that I just needed to remember things will be okay.
And things are okay, but things are also absolutely not okay. It wasn’t until this
time last year that I realized these two states of being could coexist.
The truth is I am different. My family as a unit is
different. Life is different. That concept has proven almost as hard to accept
as the chiari itself. I wanted to deny the ability for anything to cause
permanent damage. I feel angry and impatient with myself. I tell myself it’s
just dramatic and annoying I feel this way at this point.
It is as if I wanted to rely on The Savior hard enough that
I would walk out of it all only better.
I am slowly learning that the battle wounds go hand in hand
with the testimony gained. I had to fall down for the strength I felt to come,
but that strength does not change the fact that I fell. Sometimes for scraped
knees to heal a scar has to form.
When Camden points to his stuffed animal’s head and tells me
it hurts it seems to shatter my world all over again. The fact that he
remembers it is enough of a blow by itself, but the fear that he is using this
to express his own pain is worse.
The first time Camden pointed to his head and said it hurt
post op I felt it all come washing over me again. The fear, the sorrow, the
anger, the questions. It comes back so fast it’s easy to forget how far we’ve
come.
The recent drive we had to the ER for Camden’s possible
seizures reminded me I don’t get to just turn away and decide I’m done. Life
keeps going, and my life frequently leads to Children’s Hospital.
Camden woke recently at night in what seemed like major pain
and my mind can’t not go down the chiari road. We are so used to it being his
pain and defining most of what he did. As much as I wish I could I will never separate
the chiari from Camden. It will always be a factor, and always a fear.
When the neurologist explained the paperwork that would need
to be submitted to any schools Camden attends it broke my heart a little.
When I signed Camden up for preschool I got a distinct lump
in my throat as I stared at the line I was supposed to write any medical
diagnoses or chronic illnesses on.
Sometimes I cry that I still have not felt rest. That I am
still so tired. So drained from all the guesswork, all the pain and tests I’ve
watched Camden endure. I am ready for rest.
Some days as I watch him run around and play seeing his scar
physically hurts me. It’s not just the reminder or the fact that he’s different
from those he plays with, there’s just something about seeing your perfect little
child’s body damaged that hurts a mom’s heart.
So here’s to being real about life after a storm:
It’s true what they
say, things are okay. I really have
grown. I have felt fear and I have felt strength, I have felt bitterness and I
have felt gratitude, I have been carried and I have crumbled—and I have the
scars to prove it all.
