Meara - Hospital Stay
Friends, update on Meara
and where we stand on her treatment…
Next week, starting on
Monday, Meara will be admitted to Children’s for a EEG study. She will be
in the hospital for three to five days. The
purpose of this EEG is to gather information to see if Meara is a candidate for
RNS (neuropacemaker). The goal and hope is that she has plenty of
seizures, possibly even a status, in order to give the most accurate
information to the doctors on where her seizures are currently originating
from.
I know is sounds weird
to wish for Meara to have seizures but in our case it makes sense for this
stay. Meara is actually looking forward to it, she gets to sit in bed and
eat hospital mac and cheese.
Megan and I on the other
hand, well, we’ve been through quite a lot over the years, many of you have
witnessed. I wish I could say that we’ve got this totally handled but the
reality is that we have been under a great deal of sleep deprivation and stress
the last year and a half. Ever since Meara has started having status
seizures the game went to a whole new level of intensity. We’ve all been through sleep deprivation with
having kids, teething, taking care of them when they are sick. But this
is every night for us and unless we get some sort of control it isn’t going to
change.
Megan and I discussed
the other day that there has been maybe a few times we’ve left the girls
overnight so the two of us could get away together. Lots of people don’t have
the luxury of getting time away as a couple and we are part of the that tribe.
Quite frankly, with Meara’s seizures we just can’t leave her under these
circumstances. Finding someone who will wake up throughout the night and
administer a med seems impossible right now. We are hoping that at some point
that we’ll have a mechanism of control for her epilepsy so that we can fulfill
that item on our bucket list.
My friend reminded me a
few weeks ago that I should write more. She said that I have a great deal
to say. Problem is, I think that what I
have to say is so limited. Not just in scope but I think also in
resonation. But here goes anyway...
The soul is a delicate
thing. It holds so much of who we are and what we experience. The
darkest moments and the bliss. The
intellect says one thing and the soul sometimes agrees. Other times
emotion takes hold and reminds us of how hard it is to survive in difficult
places. I am unsure I will ever
reconcile this life. Where some of us have so much and others can barely
eat one meal a day. I don’t know that I will ever fully understand why there is
so much dichotomy in our world when it comes to human existence.
The reality is I won’t
ever understand. It will always consume my thoughts and emotions as I think
of why there is so much suffering in the world. I don’t have any answers
at all. Except to maybe make every next
decision about how can we take care of people. Maybe it is sustenance,
maybe it is companionship, maybe it is helping someone feel not quite as lonely
in the world.
Until next time, wish
for seizures next week and we’ll keep in touch.
Love to all,
Aaron & Megan
