Shallow

I was watching clips of the remake of A Star is Born. I haven't seen it in the theater.  There are many lines from the movie that resonate but it is the song Shallow I want to address. 

I also wonder if there is something else that we are all searching for in this modern world.  

"In the bad times I fear myself..." How many of us feel this way?  More than some of us might want to admit.  I am aware of the plot line.  The addiction.  Suicide.

This month is epilepsy awareness month. Every day is epilepsy awareness in our family.  Even MacKenna could explain to the average person what a seizure is and what it looks like.  She's four years old.

I realize that there is a myriad of reasons why we are affected by constant stress and worry in our family.  But we aren't the only ones.  And you don't have to have a child with uncontrolled epilepsy to be affected deeply by the woes of the world.

Some of us act in certain ways trying to cope.  Some write, create, read, exercise, dedicate themselves to self care and healthy lifestyle.  Others take to the bottle and pills.  I bet many just fill that void with stuff.  Material possessions, accumulation of wealth and status. 

Nothing will mask the truth though, and that is why we are not meant to do this alone.  God did not put us here on this earth to walk in solitude.  Solitude has it's purpose.  But it isn't meant to amplify the demons inside.  It is meant for silence and reflection.

We truly need each other. And I don't necessarily mean in a tribal way. We need the ability to see ourselves for what we are.  And just being honest, when I look into the mirror I don't always see the truth.  I tend to see something far more broken that I actually am.  Don't get me wrong, I am broken.  I am imperfect and less than.  But what I see is not necessarily accurate. This is why we need each other.  To remind each other that we all have value and worth.  That we matter to someone. 

For anyone out there who is struggling, finding that solitude isn't what you need right now, please know that you are not the only one who feels this way.  I am on the same journey.  

"Tell me girl, are you happy in this modern world..."

One day, my hope is that I won't fear myself in the bad times.

Peace, Love, Rest,
Aaron

Abiding

Need to speak. My heart is broken and my soul searching.

For lots of reasons I struggle each day. The list is long. Starts with lack of sleep, then the constant kick in the face from watching Meara battle epilepsy every night. Then the usual things parents worry about. General well being of the girls...school, friendships, normal stuff.

Every Thursday night we go to Noodles for dinner. Just me and the girls after dance. Megan works late Thursday nights. I’ve noticed most nights the server who brings our food is the same gal. Young. High school. She has 15-20 scars up and down both arms. Cutting. I want to tell her she is loved. It is in that moment that I know that I shouldn’t reach out. And I don’t. Not my place. But I do pray that she feels God’s love and that she realizes that she is worthy.

People are hurting. All around us. I look at the bigger picture, the massive collection of all of us and I see such anger and anxiety. I see sadness, hiding behind hopeless nights.

But there is so much more. There is love and grace. There is forgiveness and rest. Darkness is easy in this world. You could be surrounded by light and still find yourself in the depths. The whisper of despair can grab you by the throat and drag you for miles. It could be a relationship, the news, a personal tragedy, loss, or maybe a chemical of short supply.

All I know is that I see it, I feel it. Deeply. And for what it’s worth I can’t ignore it. Be it as it may, regardless of intervention or anything of the sort, I believe that we weren’t meant to do this alone. Which is why the world hurts so much. I don’t have the right thing to say. Or any answers. But if I look around I honestly believe that there is an army waiting to rescue us. The thing is, the army isn’t us. It’s something bigger than us. I’d like to believe that the army is forgiveness, grace, love. Realizing that no matter our personal beliefs, political aspirations, or personality that what unites us is all that matters.

So to the gal who kindly delivers our warm meal with your smile I say you are loved. You are worthy. You matter. More than you know. A lot more. To my wife and daughters, to all the people out there, I say hold on. You are loved. You matter. More than you will ever know.

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