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

RNS

Update on Meara:

Megan received a email from Meara's neurologist that even though Children's hasn't gotten FDA approval they have implanted two children with RNS (nueropacemaker).

So we meet with Dr. Koh on Monday to discuss Meara's case and (hopefully) see if she can be a candidate for the RNS surgery.

Wish us luck!  When we told Meara she cried happy tears.  We reminded her that there is no guarantee that RNS would work but that if she was willing to give it a try that it could provide the seizure control we are hoping for.

More as we go along.

Love,
Megan and Aaron

60 beats per minute

Went to see Cloud Cult with Andrea and Mark and haven’t been connected to music like this in awhile.

Many directions to take this reflection and a hell of a lot of complex thoughts to dissect.  One of them is the notion of what it means to have a “normal” existence on this earth, in society and all its constructs.

Because nothing about being Meara’s parent is normal. The depth of love that I have for her is not something that can be captured in a sentence or fancy words. It’s literally beyond explanation.

All the things that I experience has a feeling and emotion attached to it. I walk into a room and I am curious, without discipline, picking up on the emotions of others. It’s exhausting. All my life I’ve felt like an outsider, someone who feels deeply, to the point that I am consumed with the heaviness of living amongst myself and others.

I say this out loud because I am not ashamed anymore. I have Meara to thank for this. She has given me a second chance. A rebirth if you will. She was meant to reflect all of my insecurities and all of my strengths. Chasing her is a journey into the vulnerable world of paradox and mystery. 

All the years spent running away from myself only to return home again. The place where who I am is not who I want to be, or who I should be. It is simply who I am.

I am but a speck among countless specks. And we are all connected to each other. As is the ground that we walk on and the air we breathe. Beliefs, opinions, preferences and desires are all personal to who we are and how we identify with our own inner self. But they do not define, determine, restrict, nor give approval to our ability and need to connect with each other.

We get too caught up in things that we think we are or how we should behave. But we fail to place entire importance on the things that ultimately connect us as human beings. Like love, and loss. Pain, and happiness. Failure and strength. All of us have a piece of each other in them. It’s called empathy and divine light that begs to shine in the hopes of feeling a connection with others. Some find it in their soulmate, others find it in complete strangers, and everywhere in between.

There is so much to learn and so much pain and sadness to work through. There is also peace and a sense of belonging to meet up with. It takes risk, and courage. But the alternative is filled with destruction, hate, isolation, and poison that will run through your veins leaving a path of spiritual and emotional violence.

Our energy is consumed, expended, in many ways. The way we see fit for whatever particular reason or situation. I hope that in old age I will look back and find content that I used my energy wisely. Not for necessary gain or accomplishment but for a deep sense of belonging. 

Bells ring and remind me to wake up. Wake up to the belonging that all of us desire, whether we are courageous enough to admit it or not. Captain Lenie, brave soul among the rough and cold Antarctic waters, did not sail because he had to, not because he was expected to. He was simply himself, following his soul’s direction, he had found his belonging.

There is so much of him in all of us. Are we ready to put our guard down, to possibly show our true self to each other? In a sea of rough and dangerous water? I think we are, one small step at a time. One interaction, conversation at a time.

Update on Meara and the Journey...

First, an update on Meara.  Meara had another status seizure a few weeks back.  Meaning we had to give her the rescue med because her seizure lasted longer than five minutes. It was 1:30 in the morning.  We decided not to call 911 because the med stopped the seizure within a minute and she was still breathing.

Ainsley was awake the whole time.  Ainsley sleeps with Meara, her choice but also another form of alert (besides the seizure camera) for Megan and I.  Ainsley was upset.  For the first time, in our opinion, she realized that this seizure could determine a lot.  She was definitely scared of losing her sister. She told me this and it was at that moment that I realized that makes three.  Three of us who understand the implications of the "big" seizures.

What I am sharing next is not for sympathy but in determination to live a honest and vulnerable life.  Without authenticity I am but a empty vessel without a course on the open sea.  I am seeing a therapist once a week for post traumatic stress disorder and generalized anxiety disorder.  I thought I was going in to treat my depression but it appears that my depression is but a consequence of trauma. Existing on "high alert" is apparently no good for living.  This is what Megan and I do.  We are on high alert 24-7.  Even while "sleeping" at night we are on high alert.  SUDEP (Sudden Death in Epilepsy) is a wicked thing.  It has a taken a big toll on the both of us, perhaps three of us.  Physically, emotionally, mentally, even spiritually.

We do not have the answers.  Answers to these questions: "What do the doctors say?", "What are the next steps?"

The answers to these questions are…nothing.  There is nothing to do.  Meds don't work. Another surgery would mean a hemispherectomy resulting in paralysis on the left side of Meara's body.  We are waiting for FDA approval of the neuropacemaker for pediatrics.  This would require another surgery but would not involve removing more of Meara's brain.

I told Ainsley when we were alone in the car together that we have a lot in common.  We both have siblings that have a medical condition that we can't cure.  We both want to fix it and make our sibling better but we are powerless to do so.  We are both scared of losing our sibling.  In my case, Ben is in heaven.  So yes, I lost him…temporarily.  In Ainsley's case we are still hoping for seizure control for Meara. I think she still has hope.  I'm sure she does.  I also know that she understands the gravity of what is going on.

I don't know how to explain to Ainsley that all of this it out of our control.  That we can't choose our situation in all of this and we can't change the circumstances.  But we can choose how we react. How we go forward.  We can choose compassion, and love.  We can choose humility, knowing that all of this is bigger than ourselves. 

Intimacy is a sacred thing.  It is why I share this with you.  For the sake of connectedness and belonging.  I do believe that we all have a signature to our soul.  Perhaps if we shared with each other our vulnerability we would learn that we aren't alone in our origin or our journey.  I want to thank you for gentleness, for patience, and for reverence.  My hope is that living a honest life with you will unveil the concealed beauty among us.

Love and light.

- Aaron

The Intimacy of Silence

Silence is the best friend of my soul's intention. Sometimes it's incredibly difficult to find the silence. So much distraction and noise, something to replace the quiet that appears to be such a terrifying premise for most people these days. Being alive is often equated to accomplishment and productivity. What if being truly alive is letting the mind swim in silence. What if pondering thoughts within brings more meaning and satisfaction than the emptiness of noise and constant distraction.

Staying alive has got to be more than the manufactured world around us. It's got to be more than what our egos allow us to be. There is something mystical, something that can't be named that floats our soul above all the petty and superficial constructs that we've allowed to consume us.

If we just lay awake as if there is nothing but this one moment. This one breath. How would you spend this waking moment? Would you spend it learning about what others think of you and what they expect? Or would you breath in the immensity of the moment. Would you bathe yourself in the silence and the warmth that surrounds you and the immediate space that you inhabit.

Everyone says time is precious. But the real question is, do you believe that you are precious? Enough to take hold of your silence and breathe it in?

No cliff notes here...

The passing of time is so fickle.  It never really leans into you, does it? More of a chase… I feel like I'm always either trying to lasso it and hold it back or drag it behind me.  Either way, it listens to no one, especially me.

The brokenness of a authentic life is either plain to the simple eye, or complicated…depending on what lens you look through. It can either bring the fortune of true self and unapologetic openness or it can live inside you like a hermit, never wanting to see the outside world or have anything to do with it.

I guess it all depends on who the participants are.  In and around your life.  True, there are some that I keep the sleeve of my heart close.  Others, I'm as raw and descript as anyone can hope to be.

It has been quite sometime since I've written, mainly because I have felt I don't have anything to say.  What can I say? That I struggle with depression and some days, weeks, I do okay, and then boom, out of nowhere it hits me like semi-truck.  Laid up in bed, without any way to pull myself out.  Because, let me share something…it takes personal fortitude to get out of it.  Don't get me wrong, I have many supporters, I am cared for.  But, it takes someone walking beside me, not in front of me. I'm blessed to have Megan, she understands this very well.

Should I say that Meara has been having some intense seizures since April? Not the normal ones…these are the ones where we start the clock and run downstairs for the emergency med. Do I share that we live each day for what we have with her, because we don't want to imagine a tomorrow without her? The reality is that we have to think about it.  If we don't, we won't keep the emergency med within reaching distance.  If we don't think about it we won't keep pursuing medical solutions to controlling her seizures.  We have to think of the possibility of what could happen, so we can do everything within our power to stop it.

Do I keep Ben's entrance into Heaven between me and my personal grief?  I dropped off some money to the local fire department today.  Rang the doorbell and this young, tall, muscular guy answered the front door.  As I handed him the money I explained that we missed "the boot" while we were out this weekend and didn't want to miss the opportunity to help out MDA.  I shared with him about Ben and how much MDA and the summer camps meant to our family. He said he was sorry for our loss.  I said, don't be sorry.  Ben made me who I am.  It's why I am here talking to you.  So I said thank you for everything they do for our community and for MDA and was on my way.

The short answer is no.  No, I do not censor, or cliff note my life, or any of the lessons that I have been taught.  It means authenticity is messy, and somewhat direct.  Like jumping into cold water on a hot day. You know for a second it's going to shock your system, but after a few moments, you are so glad you made the leap.

Love to a world that needs love.  Forgiveness to a world that need forgiveness, including myself.  And a wish that as I grow closer to those around me that I maintain a imperfect presentation…the one that is wholeheartedly me.

Update on Meara

Hello All,


I need to give an update on Meara. And then Megan and I will focus on next steps.


On Thursday morning Ainsley woke Megan and I up a little after 6:00am and informed us that Meara was having a seizure and that she couldn't wake Meara up.  When Megan and I realized that this was not her normal seizure status and she wasn't coming out of it we gave her an emergency med.  Her seizure likely lasted 7-10 minutes. We called 911, which is what the doctors had told us to do when administering the emergency med, and Meara was transported to Exempla Hospital by ambulance. She was admitted to the ER and stabilized by the doctors.  After a few hours Meara was able answer the doctors' questions. After a discussion of next steps with her neurosurgery and neurology docs at Childrens she was sent to Children's for a MRI. Her seizure was violent. Really, its the best way to describe it. The only way that we got her seizure to stop is by giving her the med.


I am struggling to talk about it out loud. We are now at a new normal that quite frankly, Megan and I always hoped would never happen.  We don't know next steps yet.  I've been sleeping in Meara's bed with her and this will be the case, at least until we can figure out a way to have a definitive alert system set up.


I deactivated my facebook account yesterday.  I need to focus on intimacy with my family.  I have not been the husband that I want to be for Megan. She deserves better. I am a shell of a person and Thursday was the last thing.  I need to focus on improving myself and learning how to be stronger for my wife. It is time. Especially with this new normal for Meara. For too long I've been distracted and just hoping things would get better.  I have to get back to simpler things that are most important to me.  I am available face to face, by phone, text, or email (ucfviolin@yahoo.com).


I love you all. 


Thanks,
Aaron