tag:blogger.com,1999:blog-29089682422956852262024-02-06T20:04:57.101-08:00Meara's Brave JourneyAaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.comBlogger105125tag:blogger.com,1999:blog-2908968242295685226.post-68550212254445944932020-12-21T13:51:00.000-08:002020-12-21T13:51:10.536-08:00Hospital Christmas<p> <span style="font-family: Arial; font-size: 11pt; white-space: pre-wrap;">Dear Friends,</span></p><span id="docs-internal-guid-ab8d0675-7fff-7b4a-23e9-48a32cba3826"><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Well, you probably expected that this would involve a medical update and you are correct. I also wanted to present a simple request. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">First, Meara has an infection called </span><span style="font-family: Arial; font-size: 11pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">staphylococcus capitis</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. Doctors are pretty sure that it entered her system during her cranioplasty a year and a half ago. Apparently it is a slow growing bacteria which is the reason it took until now for her to experience pain/symptoms of the infection. It is a common infection involving prosthetics (shunt). It is also the least resistant to antibiotics so that is a win. Meara has been in the hospital since Sunday afternoon (12/13). She had her shunt removed Monday night and a subdural drain installed in the meantime. Tomorrow morning (Tuesday) we have another ultrasound to check on the fluid pockets in the abdomen. If they are gone (from treatment with antibiotics) then we can schedule the next surgery to reinstall her shunt. Today marks day eight in the hospital. If I were a betting man, after talking with Infectious Diseases and Neurosurgery today, I’d say we have a 50/50 chance of being home by Christmas. If we do she’ll come home with the PICC line to finish out her IV antibiotics.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I want to express my deepest gratitude to all the families and friends who have supported us during this unexpected hospital stay. We are used to seasonal flu restrictions at the hospital but covid ramps it up a bit. We couldn’t have maintained our sanity without the help with childcare, the meals, hospital decorations, and the phone calls, texts, and well wishes.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Here is my ask. I hope with deepest sincerity that this is not a controversial ask but a very simple act of grace. I think we can all agree that our society has been through the ringer over and over again during 2020, and before. It is very easy to get into a space where we compete to see who has struggled the most, experienced the most pain, or deserves the most help.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Let me speak purely from my heart. Everyone needs help. Everyone needs grace. Everyone needs love and support. You never know what is behind someone’s curtain or what struggle they are facing. It’s all over the map. It might be mental health, finances, marriage, medical, etc. And no one is immune to needing a smile, a hug, a meal, a loving word.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">It’s easy to resort to anger. And to be clear anger can be useful at times. But I’ve spent enough time being angry about things in my life to know that I have found more peace by forgiving, by loving, by taking the time to get know people rather than resort to quick judgment and assumption.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">We all have our individual life experiences that are valid and true. And it does shape our perspective and our thinking. All I ask is that before you think of the world in a “us versus them” lens maybe instead think “how do I develop a positive and meaningful relationship with this individual?” Because you don’t truly know what their story is until you get to know them.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">This hospital floor is filled with all types of families and stories. But epilepsy doesn’t discriminate. And all of us on this floor have one common goal: keep our children alive and thriving. It’s that simple, and yet that complicated too.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">So, this holiday season, this covid season, this dumpster fire of a year, maybe smile first, say a kind word first, before getting into what divides us. You never know, you might realize you have more in common with each other than you think. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">We love you. We support you. And acknowledging that we are in the midst of possibly the biggest rise in mental health crises in a generation (don’t quote me on that) go easy on people. Personally, I respond better to a smile than a harsh word.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Happy Holidays Friends,</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Aaron</span></p><br /><br /><br /><br /><br /></span>Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com3tag:blogger.com,1999:blog-2908968242295685226.post-64088566710845716302020-04-18T21:38:00.002-07:002020-04-19T06:30:44.990-07:00Life goes up, life goes down... - Emerson Hart<span style="font-family: "arial" , "helvetica" , sans-serif;">I just realized that the last time I wrote was in August. That might be the longest I've gone...</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">The 40's are just damning...just darkest of them all perhaps. Just when you think you have some things figured out, there it comes, the cracks reveal themselves at every turn. And yet, I am the lucky one.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Five weeks in for all of us, trying to do our part and keep the greater good ahead of the individual needs and habits. It's hard. And yet, in all of this chaos and uncertainty, there is a simplicity and spiritual implosion that seemed overdue.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">You know what I'm talking about. If you really get serious and refuse to blow smoke in anyone's face you'll admit that pre-COVID 19 we were all just asleep at the wheel driving harder and harder to meet some made up measurement of success, or happiness, or life meaning. Whatever you want to call it, doesn't matter...it can remain nameless but you know exactly what I am talking about.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Consider this, an asteroid or volcano can take out the earth at any moment. It has before and it is only a matter of time until it happens again. We have had pandemics before, this is nothing new. Just new to our generations. We behave in our lives as if the amount we have in the 401K matters, or the size of house, or the salary we make. How many degrees we have or how many lines we have in our email signature. We have this idea that at some point we have made it, or that we will rest because the work is finally done.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">But what if the asteroid hit tomorrow? Would you worry about any of that? Would all the money in the world matter anymore? Of course not. So what if you lived as if that were going to happen at any moment?</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Best thing about COVID-19? You don't need an overly complicated, scheduled life to find meaning or connection. All you have to do is turn inward or towards the very dear ones that you live with.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I've spent more time with my family over the past five weeks than I have in a very very long time. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Meara has had a tough year. Middle school sucks. It does, no way around it. You get it. It's no good for anyone. At least for honest people. But hers has been especially tough. The specifics on that is for another day, another post. But related to epilepsy its been really hard. Her seizures have gotten more intense and more frequent. A few nights ago her two and half minute seizure caused temporary paralysis on both sides and temporary loss of vision. The bad ones are easy to figure out because it starts with her saying "No! No! No! Daddy! No! Mommy! No! No!" and then it turns into a wrestling match to get her to stay on her back and not turn over so her mouth is not facing the pillow or mattress. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I hate to say this but Megan and I almost high five'd each other when it was done. Know why? Because we avoided the rescue med and a trip to the ER. Now is obviously the worst of times to be going to the hospital.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">We aren't entitled to anything in this world. COVID-19 has taught us that. Painful lessons, extremely painful. For some it is missed graduation ceremonies, for some it is job loss, for others it is the ultimate...the loss of a loved one.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">And here we are reminded that we are owed nothing, entitled to nothing but our own appreciation for what we have and experience in this one moment, right here right now. Scary, right? But what if that was the key that unlocked the handcuffs we've been operating from for most of our lives. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I used to live in the moment, for the moment, when I was younger. Along the way I found myself in the same trap as the rest of you. Career, accumulation of stuff, of achievement milestones...somehow thinking any of it would give me rest when I reached the top of that made up mountain.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">But it didn't. I feel just as small as I ever have. And I feel just as inadequate and raw, and insecure as my worst day.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">And you know what? It ain't bad. It ain't bad at all. You know why? Because it's real. So real. Something I have done right over the past eleven years is work my way towards authentic living. Beauty is the ability to say to yourself that brokenness and struggle is not something to be fixed, rather something to cast the reel and see what you can pull out of that reckless sea.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Yes, I am the lucky one. I have a daughter who at any point could need a rescue med to stay alive. I have a younger brother in heaven. I have a genetic link to depression. And wouldn't you know it, when my students describe me they always start with "Mr. E is funny..."</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">If you ever thought that you'd be done learning then it probably means you have a lot more learning to do. What is the take away...here in my 40's...what is it? What have I figured out? Just that what matters most is not what others tell you matters. It's usually staring you down, right in front of you. But you are so afraid to shut out the noise, and the judgement of others that you completely miss it. How long can we chase that tail? For however long it takes...to get right back to yourself.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I've always said that I don't know much. I do know what music I like. I know that I love my wife and children so much that it actually hurts at times. I know the name of my best friend and I know that I am reasonably good at keeping children's attention and teaching them how to keep a steady beat, have accurate rhythm, and read notes off of a treble clef staff. I know how to load a camping trailer, hook it up to a tow vehicle and calculate the payload so I don't destroy the axles. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I know about as much stuff as the next person. But I still don't know when this is all going to end. Or where the finish line is, or what the real definition of success is, or if there actually is one.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">And the real question that I guess should be asked...does it matter anyway? Probably not. At least for me. The answer for me goes something like this:</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">You are who you are the minute you were born. You've always been you. Just learning along the way. Emotionally, spiritually, mentally. Just adding experience and knowledge while tripping over failures and lost opportunities. But that's about it. There is no getting control of anything. It is just a ride...a roller coaster with a seat belt to keep you from falling out...and you trust with all your might that it will hold you until the moment it is time for the ride to end.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Here is the awesome news ya'll...beauty can always be repaired. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Beauty can always be repaired. Get on it.</span><br />
<br />Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-67575742508488966602019-08-17T17:52:00.001-07:002019-08-17T17:53:15.077-07:00Elephant<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
It’s obvious that I’m not on social media. Not trying to make a statement. It’s just not for me. I thoroughly enjoy interacting with people in person. Megan knows this because when she is trying to get us home from someone’s house she and the girls will be waiting in the car for me and I’ll get a text saying “I’m leaving without you.” My best friend James knows this because at work I’ll come down to his office to chat whenever I’m not teaching kids. But Megan is good about keeping me informed of things that I might miss because I’m not “connected” to the social media world.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
One of those has been the life of Cameron Boyce.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
I’m not good at holding things back. For those who know me well, it is just for better or worse the way God made me. It’s impossible for me to hold back tears. I would rather talk about the elephant in the room than shove it under the carpet.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
For some, that means I share too much. For others it means they find comfort that they aren’t the only one having a difficult time.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
I’ve been super candid about my challenges. Ben, Meara, grief, depression, self worth issues. And although I’ve found peace these past few years I won’t stop sharing the difficult things that need sorting.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
One of those is Cameron Boyce. Meara only has seizures at night. Just like Cameron did. Meara is a happy kid. Just like Cameron was. Meara has taught me countless lessons in life. Just like Cameron did for others.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
SUDEP wasn’t talked about by our doctors, especially at the beginning. To be honest, it’s still not a real discussion point in Meara’s appointments with the specialists. And yes, she is at risk of the same event that Cameron Boyce had.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
It’s why she sleeps in our bed every night. It’s why I’m in charge of grabbing my phone and starting the timer while Megan starts talking to Meara encouraging her to fight her way out. This happens every night. SUDEP is a battle for Meara, for us, every night.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
During the day we go on about our business, me to work, to teach. Megan as she holds down our fort and takes care of our daughters’ every need before she heads off to teach at night. And we appear normal. But all is not normal. When the sun goes down and it’s time for bed, the battle begins.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
Meara asked us recently the question that we were hoping she’d never ask. “Will I die from a seizure?”</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
We can’t control her seizures, we can only react. But what I can do is encourage the people that I interact with to love those around them. Tell the people in your life that you love them. Even if it seems weird to do so. Don’t wait to make that memory that has been sitting on your bucket list.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
I’m nothing. Honestly, I’m not something special. I’m just as anonymous and small as anyone else. But I can help others understand that they belong. That they matter. </div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
Meara’s gift to me is the understanding that how I treat people, how I go about my day, and love others is what gives me purpose. Belonging. </div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
“One of the deepest longings of the human soul is to be seen.” - John O’ Donohue</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
So maybe we all have our stuff, our challenges, our struggles. What’s keeping you from sharing them? I have found more belonging by being truthful and transparent about our journey with Meara’s epilepsy. Maybe we’ve lost some fellow travelers along the way, but we’ve also picked up a army of loyalists who aren’t afraid to live authentically with us.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
I challenge you to do the same.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
Epilepsy sucks. No other way to say it. But my daughter is perfect because God made her and we are showered with her love and light as she makes this journey with us. </div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal; min-height: 14px;">
<br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
My wish, my prayer for you, is that you have belonging. Love you all.</div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-25726098859614418372019-06-10T20:55:00.004-07:002019-06-10T20:56:13.774-07:00Cranioplasty<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
Next Wednesday Meara will have a cranioplasty to repair her skull. She has missing pockets in her skull due to the hydrocephalus that was incurred from her last brain surgery.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 14px; font-stretch: normal; line-height: normal; margin-bottom: 2px; min-height: 17px;">
<b></b><br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
Because her skull is vulnerable we don’t have a choice in this surgery. The longer we wait to do this the higher risk of damaging her skull from a simple accident, fall, etc.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 14px; font-stretch: normal; line-height: normal; margin-bottom: 2px; min-height: 17px;">
<b></b><br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
When the surgeon is finished placing the implant called medpor, the plastic surgeon will then remove as much of the existing scar tissue as possible and pull her scalp closer together. She will still have a scar but hopefully it will be smaller and less noticeable. For Megan and I it is her battle scar. A story of where she has been and what she continues to fight every single night. For Meara, an almost eleven year old, this gives her a chance going into middle school to feel like a normal child. Which she isn’t. She is not normal. She is a warrior.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 14px; font-stretch: normal; line-height: normal; margin-bottom: 2px; min-height: 17px;">
<b></b><br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
Going through the process of the VNS surgery in April was a good reminder for Megan and I. How to handle the waiting room. How to handle the recovery. How to help Meara manage the pain.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 14px; font-stretch: normal; line-height: normal; margin-bottom: 2px; min-height: 17px;">
<b></b><br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
When you think of a surgeon opening up your child’s skull it’s surreal. Something that no parent wants to go through.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 14px; font-stretch: normal; line-height: normal; margin-bottom: 2px; min-height: 17px;">
<b></b><br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
But this isn’t about me or Megan. It’s about Meara. It’s about making her stronger. As if she hasn’t proved her strength, resilience, and determination over and over again.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 14px; font-stretch: normal; line-height: normal; margin-bottom: 2px; min-height: 17px;">
<b></b><br /></div>
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
This is about healing. Meara continues to have seizures every night. Megan and I do not get proper sleep. But we continue. We continue because our daughter is stronger than epilepsy. She is a warrior. And because if she can get up and take on the day then we can too.</div>
<div style="color: #454545; font-family: Helvetica; font-size: 14px; font-stretch: normal; line-height: normal; margin-bottom: 2px; min-height: 17px;">
<b></b><br /></div>
<br />
<div style="color: #454545; font-family: Helvetica; font-size: 12px; font-stretch: normal; line-height: normal;">
The ocean knows how to heal. If we continue to let the ocean heal it will. I believe that for ourselves. Some things last. Like love. If Megan and I love each other. If we love our children. If we love others. We will heal. And so will Meara. That is, hear me, that is...the only thing that will heal. Love. If we let it. If we let love takes its place, and let it do its work. We will all heal.</div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com2tag:blogger.com,1999:blog-2908968242295685226.post-23717620810011622672019-01-10T20:34:00.001-08:002019-01-10T20:34:36.977-08:00Gifted?<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="-webkit-font-kerning: none;">Disclaimer: maybe a vulgar word or two will be embedded in my thoughts and emotions within this post. Read at your own risk. I take no responsibility for how you receive my amateur attempt at explaining whatever journey this is that we are on. My slanted opinion is not sterile nor washed for political correctness. Oh, my grammar. Yes, the grammar will suck. I apologize in advance. Make no mistake, you will get the point regardless. You might not agree but you’ll understand my angular conclusion.</span></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal; min-height: 13px;">
<span style="font-kerning: none;"></span><br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">Okay, you are still here. Good luck to the both of us.</span></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal; min-height: 13px;">
<span style="font-kerning: none;"></span><br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">I want to discuss education. Yes, the rabbit hole of philosophical musings and controversy. If I hear one more parent ask why their gifted child is not being identified I am going to rip the imaginary tape off of my mouth and color the precious oxygen around me with the reasons why every single child is gifted. Therefore…no need for a gifted label.</span></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal; min-height: 13px;">
<span style="font-kerning: none;"></span><br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">Since when did math and science become the exclusive measure of success and purpose for leading a meaningful life? I call bullsh*t. Oops, I warned you.</span></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal; min-height: 13px;">
<span style="font-kerning: none;"></span><br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">Problem solve this. Culture gives the highest praise to particular areas of learning. Why? My grandfather joined the merchant marine at age fourteen. He had no high school diploma much less college. Through experience and determination he ended up claiming the title of a master navigator, and captained the R.V. HERO. A research vessel with a reinforced ice breaker hull that explored Antartica for the U.S. government. Work ethic, grit, passion, and most of all a commitment to following his instinct, his calling, his passion. And then doing whatever he had to do to get on with living this life he loved with purpose.</span></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal; min-height: 13px;">
<span style="font-kerning: none;"></span><br /></div>
<div style="-webkit-text-stroke-color: rgb(35, 35, 35); -webkit-text-stroke-width: initial; color: #232323; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">Meara is a daughter, a student, a dancer, an artist. She completes her assignments in all the academic content areas and listens to her teacher. I know this because her teacher told us. I say she is gifted. You know why? Because she is missing parts of her brain. And she still has seizures every night. But you will never find the word “gifted” launch out of my (or Megan’s) oral harbor because guess what? Every stinking kid out there is a gift. Every single one of these innocent minded small beings has a gift. And every single kid is “gifted” in something. Even if it’s in empathy, compassion, in being a good human being.</span></div>
<div style="-webkit-text-stroke-color: rgb(35, 35, 35); -webkit-text-stroke-width: initial; color: #232323; font-family: Helvetica; font-stretch: normal; line-height: normal; min-height: 13px;">
<span style="font-kerning: none;"></span><br /></div>
<div style="-webkit-text-stroke-color: rgb(35, 35, 35); -webkit-text-stroke-width: initial; color: #232323; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">I’m not raising my children to do what the institution says they should do. I’m raising my children to ask the question “What can I do to make a difference in the world?” Instead of “What will I be when I grow up?” That question is empty anyhow. You know what you’ll be when you grow up? You will be you. Perhaps a wiser and more experienced you.</span></div>
<div style="-webkit-text-stroke-color: rgb(35, 35, 35); -webkit-text-stroke-width: initial; color: #232323; font-family: Helvetica; font-stretch: normal; line-height: normal; min-height: 13px;">
<span style="font-kerning: none;"></span><br /></div>
<div style="-webkit-text-stroke-color: rgb(35, 35, 35); -webkit-text-stroke-width: initial; color: #232323; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">I am part of this institution by the way. I am a parent, a teacher, a participant and observer of society. So pin the tail on me. I am technically within the scope of blame for this institution that is incessantly obsessed with the use of the word, label, whatever we want to call it. In fact, if I were a lawyer I’d sue myself. For holding my tongue and not speaking my mind earlier.</span></div>
<div style="-webkit-text-stroke-color: rgb(35, 35, 35); -webkit-text-stroke-width: initial; color: #232323; font-family: Helvetica; font-stretch: normal; line-height: normal; min-height: 13px;">
<span style="font-kerning: none;"></span><br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">For a brief moment entertain existence without joy…or love.</span></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal; min-height: 13px;">
<span style="font-kerning: none;"></span><br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">Shakespeare…imagine being his teacher. Would you want Shakespeare to choose a profession that some institution deemed “practical” or lucrative? Or would you rather he follow his own creativity and vocational call and wait for it…become Shakespeare? Freaking Shakespeare. I do not want to imagine literature if he had followed some imaginary advice of a imaginary institution. If he had thrown his creative talent by the side to make room for a empty yet institutionally approved life.</span></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal; min-height: 13px;">
<span style="font-kerning: none;"></span><br /></div>
<div style="-webkit-text-stroke-color: rgb(50, 51, 51); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">Ponder these words if you ever feel curious of why we have more youth experiencing anxiety, depression, even suicide: “If I lose myself...I am nothing.”</span></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal; min-height: 13px;">
<span style="font-kerning: none;"></span><br /></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">Somehow I don’t read this as “If I lose my job…I am nothing.” I read it as “If I fail to be authentically me…I am lost.”</span></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal; min-height: 13px;">
<span style="font-kerning: none;"></span><br /></div>
<div style="-webkit-text-stroke-color: rgb(50, 51, 51); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">Neighbor, friend, family member…I dare you to use the word “gifted” when we discuss your child. Don’t be surprised if I give you a few reasons of my own as I opine why every child is gifted in their own right. Maybe just maybe I will convince you to lose the label and see your child as something, someone more than just the content that they learn.</span></div>
<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal; min-height: 13px;">
<span style="font-kerning: none;"></span><br /></div>
<br />
<div style="-webkit-text-stroke-color: rgb(50, 51, 51); -webkit-text-stroke-width: initial; color: #323333; font-family: Helvetica; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">Next time you say "My kid is gifted.” I will reply “Hey, my kid is Meara.” </span></div>
<div>
<span style="font-kerning: none;"><br /></span></div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com3tag:blogger.com,1999:blog-2908968242295685226.post-88876011889247304182018-11-07T20:42:00.002-08:002018-11-07T20:42:29.830-08:00Shallow<span style="font-family: Arial, Helvetica, sans-serif;">I was watching clips of the remake of <i>A Star is Born.</i> I haven't seen it in the theater. There are many lines from the movie that resonate but it is the song <i>Shallow </i>I want to address. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I also wonder if there is something else that we are all searching for in this modern world. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">"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.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><span style="font-family: Arial, Helvetica, sans-serif;">This is why we need each other. To remind each other that we all have value and worth. That we matter to someone. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">"Tell me girl, are you happy in this modern world..."</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">One day, my hope is that I won't fear myself in the bad times.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Peace, Love, Rest,</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Aaron</span><br />
<br />
<br />Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-86209589233695112392018-10-07T15:42:00.000-07:002018-10-07T15:42:28.005-07:00Abiding<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Arial; font-stretch: normal; line-height: normal;">
<span style="-webkit-font-kerning: none;">Need to speak. My heart is broken and my soul searching.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.</span></div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-54488980739111150542018-09-12T08:23:00.001-07:002018-09-12T08:30:15.270-07:00Meara - Hospital Stay<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
</div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 10.0pt;">Meara - Hospital Stay</span><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 12.0pt;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 10.0pt;">Friends, update on Meara
and where we stand on her treatment…</span><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 10.0pt;">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.<span style="mso-spacerun: yes;"> </span>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.</span><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 10.0pt;">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.</span><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 10.0pt;">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.<span style="mso-spacerun: yes;"> </span>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.</span><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 10.0pt;">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.</span><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 10.0pt;">My friend reminded me a
few weeks ago that I should write more. She said that I have a great deal
to say.<span style="mso-spacerun: yes;"> </span>Problem is, I think that what I
have to say is so limited. Not just in scope but I think also in
resonation.<span style="mso-spacerun: yes;"> </span>But here goes anyway...</span><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 10.0pt;">The soul is a delicate
thing. It holds so much of who we are and what we experience. The
darkest moments and the bliss.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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. </span><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 10.0pt;">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.<span style="mso-spacerun: yes;"> </span>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.</span><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 10.0pt;">Until next time, wish
for seizures next week and we’ll keep in touch.</span><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 10.0pt;">Love to all,</span><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: "arial" , sans-serif; font-size: 10.0pt;">Aaron & Megan</span><span style="font-family: "arial" , sans-serif; font-size: 10.0pt;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif; font-size: 12.0pt; line-height: 107%;"><br />
<br />
<br />
<br />
<br style="mso-special-character: line-break;" />
<!--[if !supportLineBreakNewLine]--><br style="mso-special-character: line-break;" />
<!--[endif]--></span><o:p></o:p></div>
<br />Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com0tag:blogger.com,1999:blog-2908968242295685226.post-60956162555066617562018-08-07T11:42:00.002-07:002018-08-07T11:42:46.945-07:00RNS<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Update on Meara:</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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).</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">More as we go along.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Love,</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Megan and Aaron</span>Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-44730653121102578062018-07-31T00:32:00.002-07:002018-07-31T10:02:08.427-07:0060 beats per minute<div style="color: #454545; line-height: normal;">
<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
Went to see Cloud Cult with Andrea and Mark and haven’t been connected to music like this in awhile.</div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
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. </div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
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. </div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; line-height: normal; min-height: 14px;">
<br /></div>
<br />
<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
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.</div>
</div>
<div style="color: #454545; line-height: normal;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvHKtrrMw3OnwdlztGFSlO5dFVrC9WF5YkqSZ1XutOOP6lZB4lxUnEinBEp3KoMQ3IbPM3k_gX7IbEXwla2cun3H3XNEIS1djPPFuHmBRot2M9dQI6sze15tKwDayDSdOXAOmm4Yz4a7su/s1600/CC1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="772" data-original-width="750" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvHKtrrMw3OnwdlztGFSlO5dFVrC9WF5YkqSZ1XutOOP6lZB4lxUnEinBEp3KoMQ3IbPM3k_gX7IbEXwla2cun3H3XNEIS1djPPFuHmBRot2M9dQI6sze15tKwDayDSdOXAOmm4Yz4a7su/s320/CC1.jpeg" width="310" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyJ504EaQEzaSCl1TcaCsIsT5ZrCW-0dIKxFIBGVSKshyphenhyphenoc5ansx2fKrNGWXWtaMkCs2tboQYVC-FDuTXtkI1RyY2gDD3DbkC_J95Y77aFFayMB_XjaPBC44yxCShqysG8f3iPXSST8ksq/s1600/CC2.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyJ504EaQEzaSCl1TcaCsIsT5ZrCW-0dIKxFIBGVSKshyphenhyphenoc5ansx2fKrNGWXWtaMkCs2tboQYVC-FDuTXtkI1RyY2gDD3DbkC_J95Y77aFFayMB_XjaPBC44yxCShqysG8f3iPXSST8ksq/s320/CC2.jpeg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTiOfyNkRsWNQb813YkpLvxq7kkjPhlU99qQscTd3wWbu30oFOPtPLNRNwwWlGtxuB9i4qQGS57Zz_NyuUHPIEaBr3jhAMhMY4nM13CdeZhIW1kzLpujqMOafj65ryUFDlW2NLrqJYlgRz/s1600/CH.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTiOfyNkRsWNQb813YkpLvxq7kkjPhlU99qQscTd3wWbu30oFOPtPLNRNwwWlGtxuB9i4qQGS57Zz_NyuUHPIEaBr3jhAMhMY4nM13CdeZhIW1kzLpujqMOafj65ryUFDlW2NLrqJYlgRz/s320/CH.jpeg" width="240" /></a></div>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><br /></span></div>
<div style="color: #454545; line-height: normal; min-height: 20.3px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-family: ".sfuitext"; font-size: 17pt;"></span><br /></span></div>
<div style="color: #454545; line-height: normal; min-height: 20.3px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-family: ".sfuitext"; font-size: 17pt;"></span><br /></span></div>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><br /></span>
<br />
<div style="color: #454545; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".sfuitext"; font-size: 17pt;"></span><br /></div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-4587695453165989902018-03-01T19:39:00.000-08:002018-03-01T19:45:46.594-08:00Update on Meara and the Journey...<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
We do not have the answers. Answers to these questions: "What do the doctors say?", "What are the next steps?"</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Love and light.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
- Aaron</div>
<br />
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-5196129267991565092017-12-21T16:45:00.001-08:002017-12-21T16:45:21.425-08:00The Intimacy of SilenceSilence 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.<br />
<div>
<br /></div>
<div>
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.</div>
<div>
<br /></div>
<div>
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.</div>
<div>
<br /></div>
<div>
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?</div>
<div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px;">
<br /></div>
</div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com0tag:blogger.com,1999:blog-2908968242295685226.post-75180716719275168862017-09-04T18:45:00.001-07:002017-09-05T06:45:46.213-07:00No cliff notes here...<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-78229324121277040852017-05-02T09:17:00.000-07:002017-05-02T09:17:57.900-07:00Update on Meara<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">Hello All,</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I need to give an update on Meara. And then Megan and I will focus on next steps.</span><br />
<span style="font-family: Arial;"><br /></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span style="font-family: Arial;"><br /></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span style="font-family: Arial;"><br /></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">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 (</span><a href="mailto:ucfviolin@yahoo.com"><span style="font-family: Arial, Helvetica, sans-serif;">ucfviolin@yahoo.com</span></a><span style="font-family: Arial, Helvetica, sans-serif;">).</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I </span><span style="font-family: Arial, Helvetica, sans-serif;">love you all. </span><br />
<br /><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Thanks,</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">Aaron</span>Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-65317718751932006702016-11-02T16:42:00.001-07:002016-11-02T18:37:18.599-07:00Epilepsy Awareness Month<div style="font-family: Helvetica; font-size: 12px;">
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...</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
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.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
And…give a caregiver a break…they need it.</div>
<br />
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-84617409876447821392016-10-03T19:43:00.001-07:002016-10-03T19:43:24.969-07:00Time...it keeps stealing moments.<span style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">You know you've wrecked your garden when you neglect it. Better yet, in my case... I've planted the seeds too deep.</span><br />
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
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. </div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
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.</div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
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.</div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
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.</div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
God, grant me the time to take all of this in. Give me strength and tenacity to keep turning the pages.</div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
Driving...driving...into the wind.</div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-88486037673124244932016-08-01T13:48:00.003-07:002016-08-01T13:48:35.576-07:00<span style="color: #454545; font-family: "uictfonttextstylebody"; font-size: 17px;">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.</span><br />
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
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.</div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
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.</div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
Physically, I'm just like the rest of you. Constantly tired from chasing around my own kids and attempting to meet their needs.</div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
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.</div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
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.</div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
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. </div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
And for the record, today is the 4 year anniversary of Meara's first brain surgery (the grids).</div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<br /></div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
And lastly, This poem by John O'Donohue is for me and you Ben.</div>
<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<h1 class="bg-acikturuncu txt-beyaz height-min-default light pt42" style="box-sizing: border-box; font-weight: 300; line-height: 1.1; margin: 0px; min-height: 40px; padding-bottom: 10px; padding-top: 10px; position: relative; text-align: center;">
<i style="background-image: url(https://m.poemhunter.com/static/images/v4/header-arr-turuncu.png); background-position: 50% 0%; background-repeat: no-repeat no-repeat; background-size: 13px; bottom: -7px; box-sizing: border-box; display: block; height: 7px; position: absolute; text-align: start; width: 375px; z-index: 9;"></i></h1>
<div class="wrapper pad-top-10" style="background-color: rgba(255, 255, 255, 0); box-sizing: border-box; display: inline-block; padding-bottom: 0px; padding-left: 15px; padding-right: 15px; padding-top: 10px !important; width: 375px;">
<div class="pt32" style="box-sizing: border-box; margin-bottom: 10px;">
When you lose someone you love,<br />
Your life becomes strange,<br />
The ground beneath you becomes fragile,<br />
Your thoughts make your eyes unsure;<br />
And some dead echo drags your voice down<br />
Where words have no confidence<br />
Your heart has grown heavy with loss;<br />
And though this loss has wounded others too,<br />
No one knows what has been taken from you<br />
When the silence of absence deepens.<br />
<br style="box-sizing: border-box;" />
Flickers of guilt kindle regret<br />
For all that was left unsaid or undone.<br />
<br style="box-sizing: border-box;" />
There are days when you wake up happy;<br />
Again inside the fullness of life,<br />
Until the moment breaks<br />
And you are thrown back<br />
Onto the black tide of loss.<br />
Days when you have your heart back,<br />
You are able to function well<br />
Until in the middle of work or encounter,<br />
Suddenly with no warning,<br />
You are ambushed by grief.<br />
<br style="box-sizing: border-box;" />
It becomes hard to trust yourself.<br />
All you can depend on now is that<br />
Sorrow will remain faithful to itself.<br />
More than you, it knows its way<br />
And will find the right time<br />
To pull and pull the rope of grief<br />
Until that coiled hill of tears<br />
Has reduced to its last drop.<br />
<br style="box-sizing: border-box;" />
Gradually, you will learn acquaintance<br />
With the invisible form of your departed;<br />
And when the work of grief is done,<br />
The wound of loss will heal<br />
And you will have learned<br />
To wean your eyes<br />
From that gap in the air<br />
And be able to enter the hearth<br />
In your soul where your loved one<br />
Has awaited your return<br />
All the time.</div>
<a class="text-writer grilink italic pt32" href="http://m.poemhunter.com/john-o-donohue/" style="box-sizing: border-box; display: block; font-style: italic; outline: none; text-decoration: none;">by John O'Donohue</a><br />
<div>
<br /></div>
</div>
</div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-17166387499144170272016-04-15T19:49:00.000-07:002016-04-15T19:49:15.100-07:00Finding Joy…in Matilda (the pet whale)<div style="font-family: Helvetica; font-size: 12px;">
This rambling of thoughts is less about Meara specifically and more about my frustration with living amongst the world that she is growing up in. Though it's not about my reality…more about the reality that surrounds me. Does that make sense? Yeah, doesn't make sense to me either. I think that is why I find it somewhat of a struggle… my brain hurts trying to figure out why we continue to live so completely unaware of what is really important in this world.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Like…healthcare for all. Real health care. Not just expensive access. I mean health care as a basic right, as education is…or should be. And I don't mean in a political or "let's make it make financial sense" type of way. I mean just as the right thing to do. To provide for everyone. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I see it in my students every day. I see them asking what they can get, what's in it for me? Instead, they should be asking, what can I do for others? How can I do some good in this world for others?</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
What is our obsession with success? Or personal achievement? It's such a fleeting dismal potion that lasts a microsecond before the emptiness returns. Seriously. I see it in my students. They accomplish something and maybe they see it, maybe they care, maybe they don't. But it doesn't matter really because they've already moved on to what the next best thing is in an attempt to quench their insatiable thirst for fulfillment. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Meanwhile, my own disjointed and perhaps lonely opinion is that it's not about achievement or personal fulfillment. It's about joy. It's about creating a world around you that is bigger than yourself. Meaning, we aren't more important than one another. We are just part of something that is so much bigger than what our brains can possibly comprehend. And maybe it's our purpose to spend time with one another in meaning, in authenticity. Maybe, just maybe our egos are something that get in the way of loving one another. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
There are many regrets that I have in life. People I've treated unfairly, people that I've judged, and mistakes I've made. Not a day goes by that I don't realize my own imperfection and mortality. The one thing I know is that the good that I can do has nothing do with proficiency, intelligence, personal or professional aptitude or achievement. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I bet my grandfather never really thought about personal or professional achievement. I could be entirely wrong. I often am. But I bet he thought a lot about his "pet whale" Matilda. Sure, we would tease him about his pet whale, half believing this incredible fish story. But, all of us grand kids knew it was true. Every time Captain Lenie would head towards Antarctica there would be Matilda, swimming right alongside the H.E.R.O. My point is...my grandfather found incredible joy in the sea and on this boat…his boat. In the vast nothingness (and yet everythingness) of a otherwise remote and beautiful landscape he felt himself called. Why else would he keep going back except that he found joy? He was a rebel, but he always did the right thing for the right reasons. There wasn't much of a blueprint. He followed his wits, his heart, his obstinacy.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
And yet, although my grandfather wasn't much of one to say "I love you" I do feel a great deal of him in me. He captained his ship his way. And it was the right way. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Why can't that be enough? Why can't we all just find our own way?</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
When my life is over everything around me will be what it is. I am just a small, very small part of this whole thing. Just one heartbeat. It's as simple as that.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Bring on the joy. Bring on the opportunity to step forward. Bring on the opportunity to hear one simple melody that makes things a little better…even if it's only for a short while.</div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com0tag:blogger.com,1999:blog-2908968242295685226.post-52157552677980193942016-03-10T05:14:00.000-08:002016-03-10T05:14:08.198-08:00Light...<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
Everything that broke my heart has made me rethink why and how I should spend my time living. Everyone has their share of hurt and everyone has moments when they lose their mind.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Then, light. And imperfection. And joy, and love. And laughter.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Every day is a complete restart. It's me reminding myself that I don't need anything that I don't have already. It's reminding myself that the only destination that I have is right here.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I spend time worrying about how long I have Meara. I also thank God that he gave her to me. I am thankful that I can hold her hand.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
My mind is my worst enemy, my heart my best friend. I've spoken everything I'd like to say, I have expressed everything that I believe in. But living in this world provides extreme conflict. It's okay, that others have their focus and importance placed on things that are of no concern to me anymore. That is the separation of our journeys. Everyone has their own sense of belonging and the pursuit of it.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Meara had her parent teacher conference yesterday. She is growing immensely. Major themes are that she is kind and a hard worker. Teachers love to work with her.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I can't help but look at the standards for learning, society's expectation for what is important, and feel the disconnect and agitation of walking through it though. I pray that I stay strong and remember to live in the moment and not compare this life to anyone else's. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Ben is here with me throughout the ages. He's always tapping me on the shoulder and saying "Bubby, stop being stupid. Pay attention to what really matters and stop worrying about what other people think of you. Live. No regrets. Don't look back. Just move forward and live for today. Screw up and make a memory. There is no time machine that can take us back. Don't forget to live your life because you are spending time worrying. You don't need anything that you don't already have. The next destination is right this moment. Don't be stupid. I love you."</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
You know, for a brother that is eight years younger, he really knows how to teach. And he's still teaching me. I give this moment my fullest attention.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I owe Meara this life. I promised her love, protection, guidance, patience and infinite embrace the moment I held her for the first time. Everything else is just…not important.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
This life is a pilgrimage.</div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-81572448256979312852015-11-27T19:39:00.002-08:002015-11-27T19:39:52.916-08:00A Pilgrimage<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
Megan shared a blog post with me from Thanksgiving 2013. It was frightening. An opening that felt incredibly intense. A sense of fracture and imagery that just pierced the already fragile day to day existence that I've come to inhabit lately. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Meara is doing well. She's active in school and with her friends. She's the light she's always been. She is still having seizures. The Charlotte's Web isn't providing control. Maybe it is keeping her from having more seizures than she would without it. We don't know. We have to make a decision soon whether or not we'll keep her on it. We are almost at max dose. After this, it is just waiting for something else.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I've been searching a lot this past year. I can tell you that I've never been so tired and exhausted. I feel incredibly old. Physically, emotionally, spiritually depleted. I'm hanging by a thread most of the time. Wondering if I've hit the other side of the journey where I'm just on a slow crawl towards the end or…maybe there is a new birth in my future. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Every day, I am just trying to focus on the love I have for my family, and for everyone to be honest. There is a sad darkness to life that can just drag you down. Every time I see Meara have a seizure I can feel the stress hormones in my body take over. Although I reassure her and remain calm and talk her back to sleep I can feel the intense toll it takes on my physical body. When I explain to others at a birthday party or gathering of some sort the whole experience of her life it just hits me in the chest all over again. You'd think I'd be stronger by now.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I talk to a therapist about this. I ride my bike like a freaking animal. Driving the hurt of life right through my legs and sometimes so hard I wonder if the crankshaft on my bike will just crack right off in the middle of my commute. Megan is kind to let me sleep through the night. I love on my children and drink three cups of coffee a day. I try to be present for my students every day, a lot of times shoving aside the insane ridiculous amount of music "standards" and opting instead to have honest conversations with them about life because at that moment in the lesson that is the message they are sending me… that they want to know why music is important in the grand scheme of things…and also how it can save them.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I do all of this with the hope that it will somehow erase the pain of Ben's absence from my everyday life. I somehow hope that it will bring closure to losing Mom McGuire so suddenly and without notice. I try to use it as a way to assure myself that Meara will be okay even though we can't stop the seizures.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
It's a lot. Life. Sometimes I ask God to take me now so I can be relieved of the incessant stress. So I can be freed of the feeling of failure here on earth. I'm trying so hard to be a light in the midst of all this darkness. And somehow…I just keep on feeling that feeling of coming up short.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
There is a sense of guilt that when I read back on reflections of our journey with Meara that I haven't somehow gotten "stronger" through all of this. Although I feel as though my priorities have changed (for the better) I feel rather weak. When I read the posts from the past few years I realize grace. I realize a pilgrimage through darkness. I realize that nothing is promised. And I realize that the only thing we can do that really means anything here on this planet in this temporary human existence is to love. The flip side is that love hurts. Loving Ben hurts. Loving Mom McGuire hurts. Loving Meara hurts. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
But love is the gravitational force that is the only way up. Yes, it will drag you down. Far down. Bloody knees scraping on the pavement kind of down. But it also brings you up. Up to the realization that there are only a few things that really matter while we are here on earth. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I do believe that this is part of the pilgrimage. Life is nothing but fracture, fragmentation, wandering like a nomad from event to event. But one day I'll see Ben again, see Mom McGuire again…hold Meara without seizures. In the meantime, the whole goal is not to waste time on things that mean nothing. To leave things alone that are absent of heart and to instead follow the light. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Living an honest life is infinitely harder than pretending. It is also redeeming because I hope that when I look back on my life that I won't have regrets.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I hope that I've loved Meara enough. I hope that I've been the dad that she needs me to be. I hope that all the times I've let her down, let Megan down, that I can be forgiven. I hope that my life will mean something. That I haven't just taken up space here.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
In the words of Gregory Alan Isakov "…and God's been living in that ocean, sending us all the big waves and I wish I was a sailor so I could know just how to trust, maybe I could bring some grace back home to the dryland for all of us."</div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-78548968981363895322015-09-22T21:39:00.002-07:002015-09-22T21:39:42.366-07:00Grace<div style="font-family: Helvetica; font-size: 12px;">
Ask Megan. It's been quite some time since I've written. Part of it is that I need solitude. I need to pursue the truth that there is something bigger than me. This journey, this space, whatever it is that you want to call it, this place that I inhabit…it is all demanding, relentless, and filled with grace.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Meara is evidence that a life worth living is a life where you aren't afraid to get your ass kicked. I'm not really speaking of her, she kicks epilepsy's ass every day. What I mean is that she teaches me that I should be vulnerable and authentic everyday. With that comes failure, falling down, imperfection, and wait for it…grace.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I miss writing. I need to pursue this idea that I am not in control. I need to explore in depth the notion that "the more I learn, the less I know." I spoke with a friend today and I said that I'll never be the same person I was before. She said that of course you won't be. You are becoming the person that you are meant to be now. It is difficult to say goodbye to the old me. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I'm not interested in rules. I'm not interested in expectations, achievement, accolades, success, blah, blah, blah. I only care about connectedness. I care about love. I care about compassion. I care about grace and redemption. I care about being around people who are willing to have their ass kicked and talk about it. I am interested in knowing the real struggle. An authentic life filled with bravery, courage, and feelings. I want to think less and feel more. </div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
I'm not really interested in feedback. I am interested in truth. I am interested in the pursuit of truth, compassion, and grace. I won't fake it anymore. I can't.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Meara's Brave Journey. When I titled this blog about her journey with epilepsy I wasn't thinking about my own bravery, Megan's own bravery, maybe your own bravery. But really, that's what this is all about. All of our bravery. Our willingness to commit to vulnerability and acknowledge the adversity, the loss, the risk of sharing our emotions and inner depths.</div>
<div style="font-family: Helvetica; font-size: 12px; min-height: 14px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px;">
Sanctuary. Connecting. Believing. Resilience. It's all right here. Are you interested?</div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1tag:blogger.com,1999:blog-2908968242295685226.post-25220475688879286342014-07-26T07:24:00.003-07:002014-07-26T07:24:13.876-07:00Shunt Revision Surgery<br />
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
This week the CSF built up in Meara's head and wasn't draining like it should. Finally, after she threw up Thursday we called Childrens and took her in on Friday for a MRI and consult. The MRI showed that her ventricle was enlarged, meaning that the shunt has stopped working. Her neurosurgeon is back in town on Monday, so we have a shunt revision surgery scheduled for 8:00am Monday morning with an overnight hospital stay to monitor the head wound and to get the required three doses of IV antibiotics. Hopefully they will only have to open her up near the actual valve but they will test the entire shunt that runs through her body to figure out where the malfunction is. The surgeon will be able to identify the problem area once he is in.</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Meara has had this revision before, two weeks after the original shunt surgery. She knows what is happening and the only thing she dislikes about it is the IV. Otherwise she is in great spirits and doing just fine. If the fluid continues to build over the weekend and she throws up again then we head down to the hospital right away and the on call surgeon will perform the surgery.</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
I want to extend a special request for a family that we are blessed to know by being on this journey. Ashlyn is nineteen and will be having grids placed on Monday by the same surgeon that Meara has. She and her parents will be gathering information from the grids and making a decision about possible resection in order to gain control of Ashlyn's seizures. Please pray and send love to this wonderful family. The surgeon will be operating on Meara first, and then operating on Ashlyn next. This family is incredibly brave and we surround them with love and strength.</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Hug your kids today, hug your spouse, hug a neighbor. You never know what kind of stuff life will throw at you at any given moment. So live in the moment and be grateful for what you receive. We love all of you and wish you peace.</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Love,</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Aaron & Megan</div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com0tag:blogger.com,1999:blog-2908968242295685226.post-9716314549680126612014-07-16T18:32:00.000-07:002014-07-16T18:32:40.790-07:00Update following EEG and Neurology Visit<br />
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Meara had a EEG stay at the end of June. Were were there for three days and during the stay she had one seizure. The rest of the movement in her sleep they identified as arousals. So, that is good news. She might not be having as many as we think based on this snapshot. </div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
So, the current seizures are coming from her motor strip, or right behind it. This means that a "third player" showed up. The first surgery took care of the first player, the second surgery took care of the second player by isolating the activity in the frontal lobe. The latest EEG did show some spikes/seizure activity in the frontal lobe that they disconnected in the second surgery. Basically with the second surgery it has prevented the second team from affecting the rest of the brain. Think of it as putting the "bad guys" on an island by themselves. </div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
In terms of a surgery perspective the next course of action would be to do a hemispherectomy and she would lose all motor function on her left side regaining some of it with intense physical therapy. We've already decided a firm no to that route. What it means though is that her current seizures could be affecting her motor control anyway. Now, Megan and I haven't seen any noticeable loss yet. Given the fact that she's had seizures since was two weeks old perhaps it is not out of the realm of possibility that her brain has moved her motor function somewhere else in order to avoid interruption or damage from the seizures. Well, at least that is my own positive lean. The other positive lean is that at least they are not affecting the cognitive part of her brain. The meds affect her cognitive development but at least the seizures aren't. </div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
We had an appointment with Meara's neurologist this afternoon at Childrens and we informed her that we are pursuing the Charlotte's Web strain of CBD. To our awesome surprise the neurologist shared with us that the hospital is in the process of securing a clinical study of a synthetic version of CBD. She'll present to her boss next week. They will have to choose between two different competing manufacturers of the drug and then hopefully begin trial within a few months. We told her that we would like to be considered for the trial if Meara qualified. This could be huge if it works. If it does work it means that since it is a synthetic version and FDA study approved that we could travel with the drug and it would be included in our insurance formulary later down the road. In other words, it would be legal across state lines and also managed by the doctors that we've been seeing for the last six years. We are still on the waiting list with Realm of Caring but since we are at the mercy of how many crops they can grow/harvest it might take a very long time until they can take Meara on as a patient. And it is important for Megan and I to keep in mind…that it might not provide control for the seizures. But at least it is another route to pursue with a heck of a lot less risk and definitive deficit loss than another surgery.</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Meanwhile, Meara is doing well. She is highly active and looking forward to first grade next year. She loves her sisters and continues to beat the odds. Resilience baby. Resilience. </div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Love to all,</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Aaron & Megan</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG8W7MqwUKzq9yDlOgo1psUCdx2xBZwixK6zOiUSfLEXX6VzZw81wuzz1-Kp3IYK0eeRBlvGC3LeWMhHYj0K65sRtJiACXe8oOpshYa5FCV5jFcw03zOcrAQ0BruF9UviD8AY6Cx8UvOky/s1600/portrait+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG8W7MqwUKzq9yDlOgo1psUCdx2xBZwixK6zOiUSfLEXX6VzZw81wuzz1-Kp3IYK0eeRBlvGC3LeWMhHYj0K65sRtJiACXe8oOpshYa5FCV5jFcw03zOcrAQ0BruF9UviD8AY6Cx8UvOky/s1600/portrait+1.jpg" height="320" width="256" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2xMpXqAh_Miner-IUc9LkM9FSsI-aqZGoAjg8HecYbjH9zeM37zasRMch2nVAo3Un68ytITB_jXFXMi6Ldo5kWSHIIfxkjUc88d0O2-GdzU7CSn3eLJPQ5njbhtw8SBYkUNlmIhe62Z0D/s1600/portrait+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2xMpXqAh_Miner-IUc9LkM9FSsI-aqZGoAjg8HecYbjH9zeM37zasRMch2nVAo3Un68ytITB_jXFXMi6Ldo5kWSHIIfxkjUc88d0O2-GdzU7CSn3eLJPQ5njbhtw8SBYkUNlmIhe62Z0D/s1600/portrait+2.jpg" height="256" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_f9qfJcYe4pbfseF9pGEVTw5N_vR9dMQ9OfArtZSrjI4VUvI4oDhs_hYaR9_FNaWay2yIjb18U4nsEx5sD3Tb05tvvw1OV7BAY8MW-fDtus8RyXJE2dyn2V_3-JDFPJBi9jDOaIF55I-1/s1600/portrait+4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_f9qfJcYe4pbfseF9pGEVTw5N_vR9dMQ9OfArtZSrjI4VUvI4oDhs_hYaR9_FNaWay2yIjb18U4nsEx5sD3Tb05tvvw1OV7BAY8MW-fDtus8RyXJE2dyn2V_3-JDFPJBi9jDOaIF55I-1/s1600/portrait+4.jpg" height="256" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRfrlpqL_Nqp3yboxvsRxMVm_h_N6mynYfhyM8aj8P5CUSo5ptoaruXL8p8dx4uOfAPEqPjfKZwnaJnOKYUaHICPTBNxdI5Exvh8uQ3RBdTmawU3-2aBPbOEenz5tidnujVrxLhuKl_hoQ/s1600/portrait+5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRfrlpqL_Nqp3yboxvsRxMVm_h_N6mynYfhyM8aj8P5CUSo5ptoaruXL8p8dx4uOfAPEqPjfKZwnaJnOKYUaHICPTBNxdI5Exvh8uQ3RBdTmawU3-2aBPbOEenz5tidnujVrxLhuKl_hoQ/s1600/portrait+5.jpg" height="320" width="256" /></a></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com0tag:blogger.com,1999:blog-2908968242295685226.post-41770311890132890082014-05-17T11:59:00.001-07:002014-05-17T11:59:36.567-07:00Next Steps<br />
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
I've had a good amount of friends ask what our next steps are with Meara's treatment. We've signed Meara up for Realm of Caring in Colorado Springs which is the non-profit that grows and dispenses the Charlotte's Web strain of CBD. It's actually classified as hemp because the THC content is less than 3%. There is literally no way that Meara could get high from this oil. In 85% of the people who take it there is improvement in seizure control. We have a long road to actually get her qualified. Meara will require a "red card" which is a Colorado medical marijuana card. We have to get two doctors to sign off on it. Since her neurologist at Children's and her pediatrician at Kaiser will not sign off we'll have to find new doctors outside Meara's current health care who are open and supportive of such a treatment. Then, we wait for Realm of Caring to have enough supply to add Meara as a patient. As it is right now there are about 4,000 people in Colorado ahead of Meara on the waiting list.</div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;">
<br /></div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
I don't think that Megan and I have to justify such a bold move. And I don't feel that any one of you have expressed (or implied) otherwise. In fact, we've experienced nothing but positive support and affirmation as we have decided to head down this road.</div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;">
<br /></div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
I will say this though: we've given traditional/conventional medicine it's turn and then some. It's been 6 years on this journey that we've exhausted all possible anti-seizure pharmaceutical drugs, spent 10 months on the ketogenic diet, and have tried 2 brain resection surgeries. I think it's okay for us to try a plant. When it becomes available, which might take a long time, we'll give it a go and see what happens.</div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;">
<br /></div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Good news, we were able to schedule Meara's 2-3 night EEG hospital stay for June 23-25ish. That means it'll count towards the current year's health insurance deductible which we've already met. That is huge for us.</div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;">
<br /></div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Meara is doing great. She missed at least 35 days of school from surgeries/hospital stays alone and according to the team of teachers that she receives support from she is right on target for reading and writing. She did not qualify for a learning disability but they were able to qualify her for continued support under "other health issues". She has trouble with auditory processing, probably because of the area of her brain that was affected by the seizures/and then resected. Basically, she gets the content, she just has trouble keeping it stored long enough to transfer the content/directions to a task. So she can do the things her teachers ask her to do, just with more visual reinforcement and breaking down the directions into smaller steps.</div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;">
<br /></div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
I injected a quick discussion around adversity while teaching my 5th and 4th graders this week. Maybe my last ditch attempt to have some positive influence on them before they move on.</div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;">
<br /></div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Adversity is a training ground really. Or perhaps a battlefield. Or maybe a crazy house filled with mirrors. Here's what I know about adversity though: you can't avoid it. No one can. Doesn't matter how difficult or convenient/easy your life is. Everyone has it in some form and some degree. And if you don't think you do, just wait. You'll have it at some point. The idea is not to avoid it or run from it. The more you live within it, the more you learn about life. As you navigate through the adversity the better you get at being able to find the joy in life.</div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;">
<br /></div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
It's tiring as hell of course. But I've learned that anything worth anything in this world requires work. Whether it's with hands, mind, or heart. </div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;">
<br /></div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Love to all,</div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Aaron & Megan</div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<br /></div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<br /></div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<br /></div>
<div style="font: 13.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<br /></div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com2tag:blogger.com,1999:blog-2908968242295685226.post-62378106241980241972014-05-01T21:11:00.001-07:002014-05-01T21:11:18.343-07:00Fast MRI<br />
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Megan took Meara (along with the girls) down to Children's today for a fast MRI so neurosurgery could get a new baseline post-surgery. Everything is looking good. The neurosurgeon said after reviewing the images that her ventricle is small meaning that it was the right decision to install the shunt. The shunt has been working and is keeping the CSF from building up. Thank you to Chris Short for meeting Megan at the hospital to help keep an eye on the kids. You are an angel. I should also mention that I have the strongest wife on the planet. Can't believe MacKenna is six days old and she lugged three kids down to the hospital today without me. She's downright amazing and a heroic mother to our children.</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
In case we haven't shared we should let everyone know that Meara's seizures are back. She's been having them at night and while napping. We believe they aren't as intense as they were before, meaning that she doesn't stop breathing like she did pre-surgery and they aren't as long. The neurologist wants to do a 2-3 day EEG hospital stay to get more information. We will try to get it scheduled before our insurance calendar year is up (June 30). If you are the praying type, pray that we get this stay in before that date. It's the difference of having to meet the next year's out of pocket maximum amount or it being covered entirely because we've met our out of pocket for this year already.</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
One thing is for sure, we will not be pursuing a third resective surgery. Meara's current quality of life is high and we will continue to support Meara by making medical decisions that preserve this. We don't regret the decisions we've made because we believe that we weighed the risks and benefits and we've done our best.</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
I have a coworker who turned me on to a daily email blog a few years ago called Tiny Buddha. It touts simple wisdom for complex lives. The blog today was titled "How to Stop Feeling Inadequate and Embrace Your Imperfect Self."</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
The author points out her realization that "the stacks of certificates and awards collecting dust inside a drawer in my perfectly clean house weren't doing much for me…they were only temporary fixes to fill the voids of my spirit as I desperately avoided being completely honest with myself and opening up to my truth and vulnerability." </div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
I think of this every single day as I pursue excellence in teaching, as we send Meara off to school. I think of my students who are growing up in a society that places so much importance on specific content and job skills that are deemed essential and mandatory for the success of our capitalistic, profit driven economy. I think of the emptiness that they must feel as they reconcile who they want to be versus what they have to do in life.</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
So we have established that nobody is perfect, right? Seriously, nobody is perfect! So if we can let go of this self-inflicted pain due to our insane need to find approval from our achievements and what the world thinks we should be and just…well, just love each other. Just live our lives so that we recognize and value relationships more than money, fame, success, accolades. If we can just recognize that joy is found in our own soul. The author, Dawn Gluskin, today in her blog writes "…if you are not living your own truth and doing things that are in alignment with your own soul's calling, then you will always be left feeling unfulfilled and always grasping for that outside validation."</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Here is a proposal. Let's raise Meara, Ainsley, MacKenna, and all of our precious children that we love and adore and just want the best for…let's raise them in a society that values this acknowledgement of the soul's truth. Let's give our children, our future generation and caretakers of this earth, the green light to follow their heart and find validation within themselves instead of these neurotic and insane principles that have nothing to do with a more compassionate and loving society, only a society hell bent on improving the GDP.</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
Time to stand up. Time to take back our community, our cities, or states, our nation, our world. Time to tell whoever is in charge that the right decisions aren't made for money. The right decisions are made in order to help people and provide unrestricted opportunities where kids can grow up with the freedom to make a difference in the world. A difference that will inject joy and happiness. Because guess what? Money might provide convenience…its sure as heck doesn't buy happiness.</div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<br /></div>
Aaronhttp://www.blogger.com/profile/08376645874179271875noreply@blogger.com1