Wednesday, September 12, 2018

Meara - Hospital Stay

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







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