Thursday, March 1, 2018

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


Thursday, December 21, 2017

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?

Monday, September 4, 2017

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.

Tuesday, May 2, 2017

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

Wednesday, November 2, 2016

Epilepsy Awareness Month

November is epilepsy awareness month and I happened to explain to a parent at my school what SUDEP was.  She was asking about Meara and she had heard of SUDEP.  Concerned, she asked if Meara was at risk and I responded yes.  I could tell that she wanted to ask more...

She is at a higher risk for SUDEP because the bulk of her seizures happen at night, while she is sleeping, and also because her seizures are not controlled.

I guess I don't speak about it because I honestly try not think about it.  Every night, I give Meara a kiss before I head to bed.  She's asleep and she doesn't hear me but I give her one last "I love you" for the day and expect to see her in the morning.

So I know the question that the parent wanted to ask me was "how do you live this way?"  I live this way because I have no choice.  Because Meara has no choice.  No one did anything wrong, no one made a bad choice.  This is what God intended for Meara, for Megan and I, for our family.

I will tell you this.  The perspective I have is worth more than I could put a price tag on.  Maybe I was already headed there with Ben, but Meara just pushed me to exactly the place that I expect to live every day.  That is…never take a minute for granted.

I take one day at a time.  One moment at a time.  I don't know if Meara will see me grow old, I don't know how much time we have together.  All I know is that I expect to grow old and play with her children one day.  I expect to walk her down the aisle and reluctantly give her away to someone that will never be good enough for her (at least in my eyes).  Well, maybe he will.  He better be.

I will not waste a minute worrying about things that don't matter.  I will take one day at a time and be grateful for this moment with her.  

There are so many things in life to worry about.  SUDEP should be at the top of the list for Megan and I.  And although its always at the back of our minds I will say that I'm not going to waste a minute expecting it because she and I both need to live in the moment.  Take nothing for granted and thank God for this day together.

Epilepsy is real, its frustrating, its exhausting.  Both for Meara and for us.  But it won't sentence us to a lesser existence.  If anything, it has given us the wisdom to realize just how lucky we are to be her parents and to be walking this journey with her.  How she decided to be born into our family is beyond my understanding but I will tell you that she is the greatest gift I could have ever received.

So, for epilepsy awareness month, or in fact, for all the parents and children living with a chronic medical condition please do one thing for them today. Live. Live as if nothing is promised and be grateful for each breath, each morsel, each sip, each giggle, or tear that you get to experience.

And…give a caregiver a break…they need it.


Monday, October 3, 2016

Time...it keeps stealing moments.

You know you've wrecked your garden when you neglect it. Better yet, in my case... I've planted the seeds too deep.

If it all were to make sense I would have figured this out a long long time ago. Problem is no one comes around enough. Speaking of my fits of clarity of course. 

I now know that whatever is meant to follow in step with this life I've apparently chosen...well, I've managed to find bits of peace of mind.

I have a marriage worth more than anything that you can dream up. Love like ours is something that doesn't happen that often. For someone to love me through these depths...it's something she was born for. Who else could walk my side and love me this much? No one else.

I have three daughters, their hearts beat in rhythm and but their melodies are chimes that bend to the wind...always at the mercy of their own yearning. The wind bellows and it steals the song right out of their hearts...for all of us to hear.

God, grant me the time to take all of this in. Give me strength and tenacity to keep turning the pages.

Driving...driving...into the wind.

Monday, August 1, 2016

There is a lot to reconcile in life. Whether it is your journey, your mate's journey, or your neighbor's. Everyone has "stuff" to reconcile. And the "stuff" can multiply and dissolve at any moment.

I grew tired of questioning. One reason I left Facebook and writing in general. One reason the blog became a source of increased anxiety versus the relief that I was used to feeling. Not sure if I'll ever go back and read through the experiences of our family that I've written about.

Emotionally, it's just searching for the balance that I require to be a decent husband, father, brother, friend, etc. without giving up on exploring the difficulties that are inherent to losing a sibling, seeing Meara continue to have seizures, teaching in a profession that increasingly tries to suck out the joy and authenticity that is vital to connecting with students.

Physically, I'm just like the rest of you. Constantly tired from chasing around my own kids and attempting to meet their needs.

Mentally, damn. I hope I retain my sanity. Scared shitless of sharing the same fate as my grandparents. I miss them so much. I saw how difficult it was on my parents to see my grandparents journey through dementia in the last phase of their lives.

Depression sucks. But it's also amazing. Amazing because when I have those moments of just sitting in a $5 Walmart camping chair watching the girls play with each other in the rocks and chase each other with sticks it makes me incredibly happy to be alive. Thankful for camping and going "off the grid." Thankful for the noise of a overly saturated life to quiet at least for a few days so I am reminded that joy is simple. At least for me. The simpler the day, the process, the experience the more I can breath and take in all of the many reasons why it's important that I've stuck with it until this moment. Screw politics, division, news, bureaucracy, war, trying to be "great" and all that bullshit. It's all sources of disruption and solves absolutely nothing. There will always, always be someone or many left behind. And if it's not your physical self, it will be your soul.

We weaned Meara off of Charlottes Web because we weren't sure if it was working. She was completely off for three weeks and her seizures increased, having more while awake and involved in activity. So, we are putting her back on it. 

And for the record, today is the 4 year anniversary of Meara's first brain surgery (the grids).

And lastly, This poem by John O'Donohue is for me and you Ben.

When you lose someone you love,
Your life becomes strange,
The ground beneath you becomes fragile,
Your thoughts make your eyes unsure;
And some dead echo drags your voice down
Where words have no confidence
Your heart has grown heavy with loss;
And though this loss has wounded others too,
No one knows what has been taken from you
When the silence of absence deepens.

Flickers of guilt kindle regret
For all that was left unsaid or undone.

There are days when you wake up happy;
Again inside the fullness of life,
Until the moment breaks
And you are thrown back
Onto the black tide of loss.
Days when you have your heart back,
You are able to function well
Until in the middle of work or encounter,
Suddenly with no warning,
You are ambushed by grief.

It becomes hard to trust yourself.
All you can depend on now is that
Sorrow will remain faithful to itself.
More than you, it knows its way
And will find the right time
To pull and pull the rope of grief
Until that coiled hill of tears
Has reduced to its last drop.

Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
To wean your eyes
From that gap in the air
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.
by John O'Donohue