Softer, Stronger, Grateful

While lifting at the rec center this morning…listening to Regina Spektor.  Probably the only person listening to Regina Spektor…

She sings this haunting melody…"You'll want to go back, You'll wish you were small, Nothing can slow the crying, You'll take the clock off the wall, And you'll wish it was lying…Love what you have and you'll have more love…"

We take the kids to the Brittenhams and they have an amazing time.  We eat lunch and the kids play.  We get to meet beautiful baby Caleb.  We all love to spend time with them. 

Then we come home…do chores, eat dinner, put the kids to bed.  And while I am in bed holding Meara tight…waiting for her to drift to sleep…my mind drifts to the morning that my Mom called me to say that Ben made it to heaven.

We were up in the mountains staying at a fellow teacher's condo.  She had offered it to us as a getaway after a long difficult year after Meara's first brain resection.  We had arrived the night before.  Barely settled in, my Mom called first thing in the morning to let me know that Ben passed away in the night.  I was in a state of shock…even though I knew deep down this day was to arrive at any moment.  Megan encouraged me to take the bike for the ride I had already planned up Vail pass.  It was a 2,000ft climb on bike path through mother nature's pure beauty.  Through tears and sweat I made it to the top only to receive a phone call from my Dad…we were both crying and unable to put together coherent sentences…trying to come to an agreement as to how soon we fly home.  Then I headed back down the path…to face the inevitable.

So I am in bed tonight holding our precious, courageous daughter, thinking of June 20th…thinking of the day I lost my brother in the physical form.  Thinking of Regina Spektor and her haunting words.  Thinking of how vivid the memories can be.  Even the judge's chambers in Brevard County where Ben's adoption became official.  I remember the really long table and the robe the judge was wearing.  I remember my Grandpa Lenie wore a suit.  I remember we were proud.  We were honored to have this little boy become a part of our family.

I think of Meara's incredible life history up to this point.  Nine hospital stays.  Three brain surgeries, two resections, ten months of the ketogenic diet, and countless highly intimidating anti-seizure medications that never truly worked.  Five years of interrupted sleep.

And you know the only thing I can come to is this…"love what you have, and you'll have more love."  That's it.  No race, no accomplishment, no happiness within arms reach if I can manage to work hard enough for it.  That's all some made up story…it's fiction.  A heartless tale.

Happiness is right here.  It's right here.  Don't even have to reach for it.  It's not dependent on anything I can manage or control or achieve.  I choose love…and I'll have more love.  That's it.  Unbelievable.  Thirty-five years old and it took me this long.  

I have my brother to thank, my daughter to thank, my beautiful, strong, and resilient wife and family to thank, and my loving friends and students to thank.  

Love…so simple.

Update

Quick blog update…Megan and I are completely exhausted at the moment so this will be short and sweet.

First, before I forget:  Lumy and William, you are our heroes.  Thank you so much for taking care of Ainsley while Megan has taken Meara to countless doctor appointments while I am at work.  You are family to us.  We won't forget this.  Also, to the staff at Foothill, the meals are keeping us afloat.  It is overwhelming. The generosity has taken a huge load off of Megan to not have to worry about preparing meals.  Kathyrn, we won't forget you arranging all of this and taking the time out of your insanely busy schedule to make sure we are taken care of.  You are the best.

Meara had a MRI with contrast today.  That's the long one where they have to put her to sleep.  While she was asleep they changed the dressing on her PICC line.  Afterwards Megan and Meara met with Neurosurgery and Infectious Diseases.  It was determined from the MRI that there is absolutely no infection (so they have taken her off of all the antibiotics).  Still doesn't explain the temperature.  They also determined that she does in fact have hydrocephalus.  She will have a shunt installed and it will require another surgery.  The shunt will have a valve at the top that is inserted into her brain with a catheter that runs through the ventricle in her brain down through her body and will empty into her abdominal cavity.  The shunt will be permanent.  She will need replacement shunts (more surgeries) as she grows and she will most likely require a shunt for the rest of her life.

We are freaking tired.  We also have very special people helping us out.  You know who you are and don't believe for a second that we could do it without you.  From Lisa and Barbara slinging home dinners to the house so I can drill my front bike tire into the asphalt on the way to and from work (ultimate stress buster), whether it's Lumy and William taking on Ainsley and treating her as their own, Suzanne and Ana Whitman watching the girls while Megan and I step out for Christmas shopping, or Kathryn making sure that our tummies are full.

Jan Smith dropped off a hand written note to me at my classroom this week.  This is what it said: "You never know how strong you are until being strong is your only choice" – Bob Marley

Exactly.  People keep saying…you guys are so strong.  Baloney.  We are not superheroes.  We have no other choice than to wake up and face this every day.  I'm not being sarcastic.  I'm being real.  Any one of you would do the same.  Every single one of you would get up every morning, put on on your big boy (or girl) pants, make some coffee, take a big breath, and take care of your child. So maybe we are strong, not by choice…out of necessity.

Much love to everyone….and peace.

Aaron & Megan

Time will tell...

Last blog post for awhile...

Meara and Megan are home. Meara was discharged Saturday. My Mom flew home this morning and made it safely back to Florida.

Still monitoring Meara's temperature. It rises when off the Tylenol. Still hoping for the fluid in her head to dissipate. The IV meds will run for two weeks. When they run the course then we discuss further steps at that point (shunt, etc.)

Meara has an appointment with neurosurgery in the clinic on Thursday for followup.

We are indebted to all of you that have taken the time, energy, and effort to reach out to us in all avenues (phone, text, email, Facebook, etc.)

Meals are in abundance. Thank you to Katie Finn (our OT at Foothill) for the dinner Saturday night. She did this for us while losing gas and electricity in her home due to the frigid arctic weather that has come through. Thank you also to Patti, Jim, and Emily for the delicious chili, cornbread muffins, and cookies for dinner. Thank you for driving out to Lafayette to spend time with us in conversation, delicious food, and good times. Meara really enjoyed her time with Emily. Thank you Emily for your smiles and caring heart.

Megan has already taken the lead but now it's my turn.  I'm also taking a long indefinite hiatus from Facebook. This whole thing is so much heavier than we could ever imagine. But we keep a light burning. Even if it is burning at both ends...we keep it burning. It is time for Megan and I to turn towards our family and focus on the simpler things.

I know that those of you who are connected to us will continue to do so through phone calls, texts, email, conversations over dinner or coffee...we aren't disconnecting from you. Just disconnecting from Facebook.

Always grateful for all of you. Will continue to update the blog when Meara's progress/treatment changes. You can always sign up for alerts from blogger if you would like to know if there has been a update.

My email address is ucfviolin@yahoo.com.

Please don't hesitate to reach out.

All our love,

Aaron & Megan

The World Turns...

We are sorry for the lack of updates.  Honestly, it's been a miracle that we've gotten through the week.

And, yes, it has been almost a week since our last post.

The subdural drain fell out…let's see, can't remember which day...someday this week. They stitched her up and the fluid built back up.  But not as tight as before.  It's still squishy which is a good thing.  She is still having a bit of a temperature when she is coming off the tylenol and motrin (sp?).  They still have no clue as to why she has a temperature.  Baffled.

Anyhoo, I went back to teaching on Monday.  Amazing to be back connecting with students and seeing the staff.  A sense of normalcy and a huge source of strength.  Megan has been in the hospital with Meara for let's see…9 days now.  She is so strong.  She is the strongest woman I know.  And not a day goes by that I haven't reminded myself just how lucky I am that she chose me.  How lucky I am that I have her...navigating this treacherous journey.

I took today off because we thought we were bringing Meara home.  But alas, her temperature wouldn't let us.  So, after consulting with neurosurgery we are scheduled to go home tomorrow.  We'll see if it happens.  If it does we'll celebrate…but no sooner.

The plan at home: two weeks of IV antibiotics. Check her temp twice a day.  If her temp hits 103 we are back to the hospital.  If Meara's body doesn't reabsorb the fluid in her head after two weeks then we will readmit her for a shunt (another surgery).  So this is what we wish for:  antibiotics to clear up this imaginary "non existent" infection so it will bring down the mystery temperature and also help the fluid in her head dissipate.  So that we can celebrate Christmas at home as a family and not back in the hospital.

Today was the lowest point.  But tomorrow is another day…another opportunity to turn this all around.

I am so thankful for friends.  Thankful for Melissa, Jan, Olga, James, Suzanne, Lisa, Barbara, Shelley, Kathryn, Anna, Holli, Dana, Brittany…and all of the staff that have reached out supporting us with love, hope, and meals. I've leaned on so many people this week at work.  I am sure I've forgotten to mention more of you here.  I am so thankful for all of you.  Thankful also for my Mom who has been such trooper taking care of Ainsley while I go to work and the hospital.  She has been here almost a month now.  Thank you Mom for being there for us.

Ainsley has been greeting me at the door at night when I get home from the hospital.  She runs into my arms.  She bear hugs me with her tiny frame and strong hands.  It's almost as if she were built for this journey as well.  She's wearing through the same gears.  I love her so much.  One day she'll look up to her big sister and remember through all stories how we journeyed through this together…all of us.  We made it.  Wow, what a year.  

Walking outside in -3 degrees wearing boots made for rough asphalt in ice, snow, wet…whatever the elements could possibly throw our way.  In the background, you think…is this a metaphor?  Are we in training? Am I driven to persuade myself that it couldn't possibly get any tougher and that if I can make it through this that I'll finally be able to say I've made it.  But then again…is there ever dry land?  I don't think so.  I think that life is full of challenges and struggle.  And sometimes you are on the front lines…and you get bloodied and you realize you just have to fight for it.  Fight for it.  Keep on going and never give up.  No matter how tired you are or how bad it hurts.  Maybe you win the battle, maybe you lose one.  But there is a overarching purpose that demands determination and resolve.  

We've still got some fight…

Let's see if we can get our family under the same roof.  Let's see if we can rest our eyes and warm our feet together…

I want this.  I need this.  I will fight for this.  

As always…all of our love and gratitude…knowing that we wouldn't be this far without the help, love, support, and strength of so many of you,

Aaron & Megan

Still in the Hospital...

It's pitch dark in Colorado and I'm driving back to the hospital after dropping my Mom and Ainsley off at home.  It's a quiet yet tricky drive through highway construction zones and fighting for space in tight lanes amongst nervous drivers.  Somehow in this 45 minute dance in the dark I paid attention to the lyrics of the Milk Carton Kids…surrendering their souls to strangers like me:

"This don't feel like home anymore

nothing's familiar when I walk through my door

So I thank the heavens or who's ever in charge

This don't feel like home anymore

I don't feel the pain I once did

One day just finished like a milk carton kid

Are your rooftops set free in a hurricane wind

I don't feel the pain I once did..."

And it got me thinking about why it is that life can be so demanding and unrelenting.  Thinking, what in the heck did we do to invite this kind of immense exhaustion into our life?  And then in small moments, and I mean very small, fleeting moments you start to hear the whispers of why.  

Because there is a higher calling, a higher level of consciousness that demands depth and journey.  Otherwise we'd get caught up in the same useless and ridiculous race that so many of the people around us are living.  

It all helps me realize that it doesn't feel like home anymore.  The past five years have been change.  Nothing is familiar to what was before this journey that our brave daughter has taken all of us on.  So you know what?  You can take my roof in a hurricane wind.  It's not the same place…and I'm thankful for it.

This is all a work in progress.  And I'm glad that we aren't falling for the sad fate of getting sucked into the idea of "first world problems."  At some point in your frustration and process of reconciling what has happened to your first born daughter over her short yet very long five years you start to realize that you are living in a different realm.  It is frightening and exhausting and lonely at times…well, perhaps most of the time.  But we are also drifting in a space ripe with so much meaning and honesty that it would be foolish to think that it wouldn't be frightening, exhausting, and lonely.

The lights were off in the car on the way to the hospital.  The lights are off in Meara's hospital room.  Megan is sleeping on the fold out couch thingy.  I'm sitting/laying here next to Meara in her hospital bed.  She's sleeping remarkably after I somehow just got her to swallow Tylenol and zantac while half asleep.  She's hooked up to a drain and IV meds.  The lights are off…and it's quiet.  It's like talking sweet to a dream…wondering when we might arrive back home as a family…searching for when the lights are turned back on again.

Aside from the mess of thinking that I've unloaded just now, let's discuss straight up details…Meara's cultures turned up negative for infection, she is still fighting a fever, and she is still draining spinal brain fluid from her head.  She isn't going home until they figure out what is going on…and they have no idea what is going on.  I mean that in a non-sarcastic way.  They truly are baffled at the circumstances.  But they are also very concerned and sincere medical staff so you can't blame them.

Peace, love, and gratitude,

Mostly Aaron (not at all proof read by Megan because she is asleep on the pull out couch thingy)

Thanksgiving at the Hospital

Hi All,

Last night around 8:00pm we checked Meara into the ER at Childrens Hospital.  She had a fever of 105 and her head was filled back up with fluid and causing her extreme pain.  We spent the night in the ER while the doctors tried to figure out what to do.  They admitted Meara to the hospital around 10ish this morning and we are back up on the 6th floor.  She has a subdural drain that is continuously taking the fluid out of her head.  She is also on IV antibiotics.  They suspect an infection in the fluid but it will take 48 hrs for the culture to tell anything and in the mean time they have her on the antibiotics just in case.  If the culture comes back positive for infection it means Meara will be here for a indefinite amount of time until the infection is cleared up and she doesn't require the IV meds anymore.  If it comes back negative and the fluid build up in her brain can be figured out then I suspect we could talk about going home again.  At this point, it is wait and see.

So Thanksgiving at the hospital.  It is really quiet here today.  

We'll update more as we know more…thankful for generous people who without their help we wouldn't be able to face the continuing expense of this roller coaster of medical visits, stays, consultations, treatments, etc.  Thankful for my Mom who has stayed here in CO to help take care of Ainsley throughout all of this.  Also thankful for amazing medical staff who love our daughter and just want her well.  Very thankful for those who have reached out with words of encouragement, positive light, and loving prayers.

Love to all!

Peace, love, and gratitude,

Aaron & Megan

Roller Coaster

Dear All,

It has been quite a bit of a roller coaster since we arrived home from the hospital.  Last Tuesday, a couple of days after we arrived home, we took Meara back to Childrens for a MRI and neurosurgery visit.  She had been throwing up, not eating, and was very lethargic.  The MRI showed fluid build up between her scalp and skull but not inside the brain itself.  The nurse practitioner prescribed more steroid and within 12 hours Meara was back to eating and being active again.  

Meanwhile, the seizure activity remained, in fact, sort of ramping up a bit compared to what it was earlier in the week.  Meara is still sleeping with us because we are still trying to keep track of the frequency and duration.  

Towards the end of the week she started to get more lethargic again and complaining that her head hurt.  We had a neurosurgery check up on Monday of this week for a wound check.  She checked out fine and everything seemed okay. As soon as we got home from the hospital though Meara complained that her head hurt and throughout the night she was throwing up and complaining of the pain. She developed a high fever overnight and this morning Megan called neurosurgery. They were able to get us back in for another MRI and check up in the clinic.  The MRI showed a massive amount of fluid build up in between her scalp and skull (more than last week's MRI).  This time the nurse practitioner took a syringe and inserted it above her ear but below the incision (from surgery).  She was able to drain 190ml of fluid (that is a little over 6oz.).  Immediately Meara felt better and by the time we got downstairs and finished in the lab (taking blood for tests) she was eating chicken tenders and french fries in the hospital cafeteria.  

About five minutes before we got home the nurse practitioner called to tell us that the initial tests came back from the fluid they took from her head. According to two of the infection markers she was in the clear - no infection.  That is awesome.  Her white cell count was up a bit but that could be from the steroids or possibly a UTI which we are headed to the primary care doctor tomorrow to check out. 

And…we think…she has gone two days without seizures.  We can't be sure.  Maybe we are sleeping through them.  Maybe she isn't having them.  Megan and I have not witnessed any the past two nights.  We aren't calling it control.  We are just taking it one day/night at a time.  Finding peace in small success and walls overcome.

There are many times a day that I recite this mantra to myself: give me strength and give me hope.  Give me a channel to navigate this family through.  May it be treacherous or an easy lazy glide through the peaceful sky filled with shining stars.  Whichever it may be…difficult or easy, light or dark…one thing is for sure.  We get through it.  As I stood across from my wife this afternoon, Meara in the middle on the examining table, the nurse taking fluid from our daughter's head…I realized we weren't worried.  We had complete trust in our medical team.  We were calm and reassuring Meara.  She was brave and hung in there like a champ. 

Life is one big complete gamble.  That is all it is.  At times we might have more figured out than not and we can say that we engineered our life a certain way…I argue that life is a series of decisions.  These decisions lead to outcomes.  Sometimes we know for sure what these outcomes will be.  Most of the time, if we are really honest, it is a gamble.  What we can really do though is trust.  Trust that after all is said and done that everything will be okay no matter the decision made or the outcome because of it.

That is where I will leave this update for now…that everything will be okay.  Because whether the sea is treacherous or we are sailing calm waters…we know that our journey will provide passage to somewhere new and somewhere that is rife with meaning.  Wherever that might be…

Peace, love, and all of our gratitude (in massive quantity!),

Aaron & Megan

A Week at Home...

Wish we could say that the goal of the surgery was achieved (complete seizure control) but alas it seems that we aren't done figuring this out. The good...that Meara is herself and she is active.

Who knows what this all means in terms of moving forward. Megan and I are figuring out that the brain really is the last frontier in medicine (at least it seems). There is so much uncertainty and wonder involved. 

We still hope that miraculously Meara will wake up one day and never have a seizure again. Nothing wrong with hope. For now, we are focused on the fact that she came out of surgery with such small deficits and that she will be able to go back to school after Thanksgiving break.

We have a follow up appointment with our neurologist on December 23rd to discuss where we go from here.

We want to again, thank every one of you that offered your words of encouragement, your prayers and positive light, and the generous financial help that was given to us to help eliminate our medical expenses.  It is easy to feel discouraged about what we didn't get out of the surgery but it is a huge source of strength having your help and embrace on this journey.

Meara has a follow up with neurosurgery tomorrow morning for a head wound check.  Meara also still has quite a bit of fluid between her scalp and skull that should (hopefully) go away on its own soon.

Peace and love to everyone.  Have a wonderful Thanksgiving.  We are thankful for every single one of you. Thank you for loving us.

All our gratitude,

Aaron & Megan

Another MRI...

Space, time, warmth. A breath of light in the morning. Always wondering what's at our back. Sending back anything less than a morsel of hope and determination that this path was the right one.

We took Meara back to the hospital today for a MRI and consult with neurosurgery. She's been throwing up ever since we got home on Sunday and has been really lethargic. She's lost about 5 pounds since surgery a week ago. The MRI showed fluid along the right side of her head but nothing out of the ordinary with her brain (like infection or bleeding).

The neurosurgeon said the MRI looks fine and prescribed steroids to ease the swelling from the fluid. Hopefully this will ease her pain, help her head and tummy feel better so she can eat and get some energy back.

She is still having seizures. Not giving up hope. Not giving up. Sweetie, it's alright. It's alright.

Along this ridged and ragged road where decisions are made and avenues brought into the wide open light it's among the debris that meaning can be made. It's a precious thing to be dragged across a path of uncertainty and dangerous wonders. Because although I believe Meara is going to live a happy and fulfilled life it is within this journey that we have literally no control over the outcomes of these medical treatments and intervention. No matter how hard we try, how much we throw ourselves in earnest and resolve...we are only but clasped hands begging for some meaning in all of this. I think we've found the meaning...

I think we've found the meaning.

Going Home...

Dear All,

Yup, we are going home. We are cleared with all of the doctors and we are packing our bags.  We are excited to get home and start getting back to a normal routine.  Meara's incision will take time to heal but it isn't anything we need to be in the hospital for.  She is now off of the heavy meds so we can give the over the counter stuff at home.  Meara is still having seizures but we'll wait and see what happens.  Megan and I refuse to give up hope that we will get seizure control.

As we leave the hospital after a second brain surgery (third, technically) we are parting ways with medical staff that are out for the same result that we are:  a thriving, happy Meara who has a great quality of life.  And some things that Megan and I have learned along the way...

To be vulnerable is a scary and rewarding thing. Like the warm sun on your neck when you didn't realize just how cold you felt. This journey is bit like that...taking the time and risk of being honest and vulnerable. Allowing that "warm sun" to comfort and ease the burden.

Epilepsy, like any disorder, disease, medical condition...especially concerning your own child is tricky...and frustrating on so many levels. Not having a definite cure. Not having a treatment that provides 100% chance at the outcome you'd like. You second guess yourselves as parents so many times.

And then you restore yourself to the faith that it will work out. That Meara, your child, will live happy and fulfilled...independently of outcomes and roads taken. You believe, without reserve, that your child is the ultimate gift in a world filled with so much uncertainty. You get up and charge forward with unlimited love and embrace...never allowing yourself to miss the opportunity for living this life in the moment knowing it's not how long or how much you get out of this life. It's about what you do while you are in it. It's how you love and are present in every moment.

This is what it is...a journey. No destination in sight...that's okay.

Perhaps another update when we are home and settled...along with some more pictures of Meara post surgery to show you how well she's doing.

Love, peace, and gratitude,

Aaron & Megan

Clearing Hurdles...

Dear All,

Meara is doing great. Friday morning she had PT and OT in the therapy gym and she was tossing a beach ball back and forth (catching with both hands). Mr. B would be proud. She was also able to walk up and down stairs (4 steps) by herself using the hand rail. Truly amazing considering we thought she'd lose her supplemental motor in both legs and that she'd need at least a week of intense PT to get it back. From a therapy standpoint she's cleared to go home.

Neurosurgery is close to clearing Meara to go home. Her incision is healing well and the swelling on her right side is starting to go away. The fluid buildup on the right side of her face gets absorbed into her head and into the body so usually there isn't a drain needed. Last surgery we needed one because of the infection.

Meara also has been going to the bathroom like normal starting this morning. That was also a hurdle to clear for discharge so woohoo! 

Basically the only things that are keeping us here are trying to get her to eat more, see if we can wean down to the Tylenol and ibuprofen (and off the heavy meds like Oxy and the steroid for swelling), and then see what the neurologists want to do in terms of meds/treatment for the current seizures.

We still aren't giving up hope. I've been sleeping with Meara in the hospital bed to keep track of her seizures. I didn't wake up as much last night, maybe two or three I counted. I'm hoping that I didn't sleep through others. We are holding out hope that the seizures are decreasing in frequency. Keep believing. 

Again, we are so grateful for all of you rooting Meara and our family on. It is such a huge source of strength. It really does take a village. I'm honest enough to recognize and appreciate that there is no way Megan and I could do this alone. Every single one of you that has reached out through all of these avenues have contributed to the strength and courage that our family and precious daughter have felt  throughout this current phase in Meara's journey.

More updates coming...likely tomorrow when we know more.

Love and peace to all of you,

Aaron & Megan

Finally upstairs...

Dear All,

We are finally upstairs.  We were transferred from the PICU around 5:00pm.  Meara is doing great.  She has motor function, walking to and from the bathroom on both legs.  Her head hurts pretty bad but she's got a good cocktail of pain meds, steroids (for swelling), and stuff for the nausea.  

The good news:  Meara has motor function and she is herself.  She is talking like normal and remembers everything.  

The challenging news:  she is still having seizures.  Obviously, we were hoping for control right away.  We are not giving up hope.  We are not giving up on her having seizure control.  Some of the neurologists feel that there is a "window of time" after surgery where seizures occur due to the brain settling in, trauma from surgery, extra blood, etc. and there is a possibility of control after that.  There is a family on the unit where their child seized for six days after surgery and now they have had ten days of control. 

We are not giving up hope that this surgery has worked.  We are staying positive that Meara's brain is getting used to the new normal.  We believe this.

Some of the things we are grateful for:  Meara.  Her beautiful self that has endured the unthinkable and yet has remained wild and amazing Meara.  We are also grateful for my parents who are here to take care of Ainsley.  My Dad takes Ainsley to the park every day and my Mom gives extra special attention to Meara when visiting at the hospital.  We are incredibly grateful for our friends, family, colleagues, and the Foothill family for lifting us up during this time.  Thank you to Cate from There with Care for dropping off a delicious snack bag and for giving me encouragement.  She knows very well the journey we are on and I am grateful for being able to open up to her today.

Personal note, I read a message on the Give Forward site today from a student.  It says "I love you Mr.E…".  I want my students to know that I love them too.  I am not ashamed nor embarrassed to say that I have cried a large amount just from the overwhelming sense of gratitude that I have for the affirmation and encouragement that we have received from the messages on the fundraiser site and from the personal notes given to us in cards, emails, texts, and on Facebook.  

I also want to express my gratitude for the special notes and letters that I have received from my compassionate and caring students at Foothill.  A particular third grade teacher (whom I adore) handed me a envelope and card before I left on Friday.  I opened it today.  A special student in her class named Ruby had this idea to write letters to me.  They are to give us courage when we need it.  They are called BAM! papers because we are supposed to pull the letters out and read them when we really need a lift.  Ruby's was the first one that I read. She writes a whole lot of amazing wisdom in her letter to "Mr. and Mrs. E".  My favorite …"Even though your spirit may be low.  Do not let your heart give way be strong not for me, for Meara, be strong."  and "Though when you go to Meara's room play with her not the kind of play where you play tag, the kind of play like jokes and here is one…".  Ruby, you are a inspiration.  I will not forget this.  Thank you for your amazing idea.  I will make sure to read these letters every day as a source of strength and purpose in all of this.

The generosity of everyone is also incredible and nothing that we could have imagined.  Since we don't know where Meara's future treatment is headed it gives us such confidence moving forward and we can free ourselves of the worry of past, present, and future medical expenses.  You have no idea the freedom that you have given us because of your generosity.  It is and will continue to make a huge huge difference as we continue on this journey.

Some final thoughts on Meara's progress.  She is nauseous every now and then but able to finally eat some tonight.  Tammy was our nurse when we were discharged from last August's surgery.  Tammy was our first nurse this evening when we arrived upstairs.  Meara recognizes most of the nurses and is familiar with all of the staff. 

The head wound will not keep us here.  It only takes a few days for the scalp/skin on her head to fuse.  The stitches will dissolve over time.  It will take a few months for the scab to heal, etc. but it won't keep us in the hospital.  Progress with therapy will be a factor and so will her treatment plan regarding any seizure activity.  She is eating tonight so that is good.  She's got to be able to eat and go to the bathroom like normal in order to be discharged as well.  

We will continue to update daily while we are here in the hospital if that is okay.

Love and gratitude to all.  Thank you for being such a important part of Meara's journey.

Peace and all our love,

Aaron & Megan

PICU for the night...

Dear All,

We are up in the PICU and Meara is on some heavy meds for pain and for nausea related to coming off of the anesthesia.  She is in some major pain from the pressure build up in her head and the incision site.  We are still trying to get the meds dialed in right but this was the same as the last two times so the pain isn't a big surprise.  She's being very brave and strong.

Meara is able to move her legs and both arms and hands.  We were expecting motor loss in her legs so this is really promising.  She will still be weak for sure but hopefully it means that we can start physical therapy stronger and make gains faster.  

The surgeon made the decision while in surgery to entirely disconnect the frontal lobe (on her right side) and only resect the portion that appeared as abnormal tissue.  This means that her frontal lobe is gone in terms of use but physically a large portion of the tissue remains.  The portion that they resected was sent for testing.  The surgeon said that everything went exactly as he wanted and very smoothly.  

The surgeon was able to avoid her primary motor strip entirely (amazing news!) because scar tissue from the previous surgery helped him locate that area.  We fully expect weakness on her left side but seeing her motor function is a huge confidence boost.  

The neurologist, nurse practitioners, surgeon, and nurses have all checked in on her here in the PICU and are happy with how she is responding.

We will be in the PICU overnight and then be transferred to the sixth floor tomorrow.  

Once gain, Megan and I want to thank you for the incredible support that you have provided us.  Personal correspondence will come, we promise!  For now, hopefully the blog and this update on the GiveForward site will be enough to keep us connected while we make these transitions.

All our love and gratitude,

Aaron & Megan

PICU - Post Surgery

Hi All,

Meara is in the PICU and resting.  She smiled when I mentioned armpits and she smiled when I told her Ainsley was on her way with Grandma and Pop Pop to visit.

We are holding her hands and waiting for her to wake up.  Right now, she sort of drifts in and out.

We will post more after the team of doctors have come in to do an assessment and give us more information.

Thank you everyone for lifting Meara and our family up in love and light.

Much Love and Gratitude,
Aaron & Megan

Surgery Update

UPDATE: 12:45pm

The OR nurse just called to let us know that the surgeon has finished resecting the lesion and they will begin the process of closing her back up.  The nurse said that Meara is doing great and that everything went smoothly.  I asked if the surgeon got all of the affected area out that he wanted and he said his impression was yes.

The surgeon will meet with us around 1:45-2:00pm to go over what happened and how everything went.  Meara will be transported to the PICU for the night and then we go from there.  We'll get to see her soon.

I'll post a picture of her as soon as I can get one.  Thanks to James and Chris for keeping us company and helping pass the time.

We feel the love, we see the purple, and we are embracing all of the light.  Meara is enveloped by all of your strong prayers, well wishes, and support.

Much love to everyone,
Aaron & Megan


-------------------------------------

Meara went back in to the OR at 7:50am.  She was laughing and joking with all of the doctors as they made their rounds into the pre-op exam to go through the surgery checklist with her.  All of the doctors and nurses were super nice and made a point of connecting with her.

Meara was smiling and laying still on the OR bed while they were putting the mask on her.  She fell asleep quickly.  Since this is our third time going through this scenario I was able to hold back the tears until after she fell asleep.  I made it halfway through the surgery wing before it unleashed.  Belinda, our super receptionist out front gave us a huge bear hug when we walked out.

Two awesome surprises, our friends Chris Short and James Brittenham showed up to keep us company.

The OR nurse called at 10:25 to give an update.  The surgeon started at 10:10.  Meara's vitals are good and stable.  She's doing great.

More when we have it...

Love to all,
Aaron & Megan

Pre-Op and Peace for Tomorrow...

(This was also posted to the GiveForward site)

We are feeling so loved and supported by our family, friends, colleagues and students.  To say that we are overwhelmed by the outpouring of support is an understatement.  You have given our family a new beginning.  The ability to let go, to focus on helping Meara get through this next part of her journey.  We are so incredibly blessed to be surrounded by your love, generosity, and compassion. Thank you is not enough to express the depth of our gratitude.

Today we took Meara to children's for a CTscan, blood work and nurses visit. 

Meara's surgery is now scheduled for 7:30 tomorrow morning. It will last approximately 6 hours. The surgeon will be removing a part of her frontal lobe and we expect her to lose supplemental motor function in both of her legs.  The doctors are optimistic that she will regain motor function after a week of physical therapy.  She might be weak for awhile.  We know for sure that she will lose visual spatial function but some of her doctors feel that this function can be rewired to a different part of the brain over time.  

After surgery she will be transported up to the ICU where she'll spend at least Wednesday night. She'll be on heavy meds.  Morphine worked really well last time and as soon as she got her dose she was relaxed and at peace. As soon as she is able, they will move Meara upstairs where she'll start her physical therapy and recovery.   

November is Epilepsy Awareness month. If you are willing and able, wear purple tomorrow to support Meara and the over 65 million people who live with epilepsy every day.

We love all of you and we are so incredibly humbled by the words of affirmation, the financial support, and the prayers and positive thoughts that you have sent our way.  We feel strong.  Meara is strong.  Although the idea of this type of experience can take your breath away we have been through this before and know what kind of things to expect.  Meara knows what is going to happen and she is being incredibly brave about the whole situation.  She knows she is loved and we've shared all of your thoughts and words of encouragement with her.  She knows she has a team underneath her lifting her up.  From deep down in the depths of our hearts…thank you for supporting our family. Words cannot possibly express our immense gratitude for all of you in our lives.

We will be posting updates starting at 7:30 tomorrow morning.  The nurses usually call us from the OR every couple hours to give us updates on how the surgery is progressing.  I will try to update the blog then.  As soon as she is moved to ICU we will continue to update as well.

She will do well.  She is surrounded by love and light and she is strong.  Peace to all of you.

All our love,

Aaron & Megan

Preparing for Surgery...

Awake and tuned in.  That's what I would call this past week.  Moving past the exhaustion and feeling the strength that comes from turning in and just hitching a ride on the gentle waves that are coming our way.

You know, life sure isn't easy.  And I'm not talking about traffic or stale coffee.  I'm talking about the really difficult stuff.  Like deciding to put our precious daughter through another brain surgery.  Or reconciling the fact that my baby brother passed away at the age of 27.  

But what I've decided is that it is worth living.  Because as much as these things hurt, bringing me down to the cold, unrelenting and punishing pavement, scraping my bloody knees...there isn't anything else that can possibly remind me of how lucky we are to be surrounded by love...and compassion.

There are those of you that have reached out to us this past week or so and it has reminded me that life doesn't have to be easy.  We just have to wake up and not take a single thing for granted. 

There is hope that lives in each and every one of us.  We can choose to share that hope.  We can choose to reach out and take a chance on someone.  Take a chance and be honest and vulnerable.  Like a gospel prayer that lives in the sweet melody of unbridled suffering and loss.  It reigns in each one of us.  And it can save lives.  It can inspire strangers.  It can heal relationships.  It is a sweet reminder that we all need connection in order to survive this complicated and desperate world that is doing everything it can to keep us from really knowing each other.  I mean really knowing each other.

Thank you for being there for my family.  Thank you for reaching out and showing your love.  Meara is running into the arms of each and every one of you.  She is ringing a beautiful message into every one of our souls…and bringing us closer to each other and the sense of worth that we all desire.

I will do my best starting on Wednesday (November 13) to keep a daily blog on Meara's surgery and recovery.  I will use Facebook to post the blog but otherwise am depending on phone calls, email, or even texts to keep in touch.  Megan has also posted an update on the GiveForward site as well.  Peace to all of you.

Love,

Aaron

Meara's Brave Journey Continues (fundraising page): https://www.giveforward.com/fundraiser/p4d3/mearasbravejourneycontinues

November is Epilepsy Awareness Month

This November, as Meara continues her journey with Epilepsy with another brain surgery, we ask that you help. Whether it is donating to Meara's fundraising page or a non profit Epilespy Foundation, painting your nails purple or wearing purple, posting facts or discussing the facts with someone you know, it all makes a difference. Millions of people live with Epilepsy. 50,000 people a year die from Sudden Unexpected Death in Epilepsy (SUDEP). We need to fight the stigma and educate ourselves and our children about Epilepsy, a spectrum of neurological disorders, so people with Epilepsy can live a life free from the stigma that comes from misperception. I can't tell you how often I've heard references to seizures in a joking manner in movies or on tv or from a colleague or students in a classroom. People who have Epilepsy are just like you. In fact it could be you one day, 1 in 10 people will have a seizure in their lifetime and 1 in 26 will develop Epilepsy. Fight and hope for a cure, that's what we wish for everyday. Not only for Meara, but for everyone on this journey with Epilepsy.

- Written by Megan

Meara's Brave Journey Continues (fundraising page): https://www.giveforward.com/fundraiser/p4d3/mearasbravejourneycontinues

Exhaustion and Fleeting Thoughts

This is strictly Aaron speaking...pretty sure Megan doesn't want me to post this but I'm having a hard time faking it lately.

I'm just so tired of pretending that everything is okay.  I'm tired of always trying to find the meaning in all of this.

Can I say that sometimes there are things that just suck.  Is that a crime?

I'm tired.  I'm tired of the medical bills that arrive in the mail that we just can't pay and then fall deeper into debt over. 

I'm tired of not sleeping through the night because Meara needs us or if she happens not to come into our bedroom that it's because my worst nightmare has come true. 

I'm tired of having to make medical decisions that an average parent with average kids with no major medical issues don't have to make.

I'm tired of waking up every single day having to accept the fact that I won't hear my little brother's voice again.

I'm tired of giving my all to a profession every day that is absolutely completely obsessed with the most useless time consuming worthless devices for "reforming" or "fixing" the education system.  Let me spell it out for those in charge of bringing all of this uselessness to us: GIVE US THE TIME TO KNOW OUR STUDENTS.  It isn't rocket science.  If I have meaningful, let me say that again, meaningful (!) time with my students I will teach them effectively.  Teaching the individual child means having the time to learn who they are and for them to learn who you are.  You'd be surprised what can happen in learning when the environment is set up to be meaningful.  You don't fix the "achievement gap" by ignoring the human essence of the child.  They are humans.  Not a case study or a carbon copy of some ideal high achieving pretend student that everyone thinks will be the saving grace to our greedy capitalistic economy driven society.  Let teachers teach.  Let them spend time with their students in meaningful work that they (the teachers) decide will work for their students.  And for goodness sake, can we please stop using "achievement" as a marker for success?  I'm nationally board certified.  Do you think I feel like a complete success right now in life?  If you are reading this post then you know the answer to that question.

I'm tired.  I'm sure after a good night's rest I'll post something more inspirational or positive.  But even a good night's rest won't take all of this stuff away…

I'm not the inspiration or strong man that everyone makes me out to be.  I'm just someone who's trying to not fail every single day. 

I know it could be worse. 

Tides, depths, and navigating these seas...

I imagine (and hope) that there will be day when I can explain to Meara that I am sorry for the mistakes I've made as parent.  For all the times I've gotten frustrated with her for not paying attention or for not listening.  There is that deep divide.  The one that spells out the fact that she isn't sleeping at night and therefore has a tired brain during the day.  The fact that the medications she is on are designed to slow her brain down.  Then there is me…perfectly imperfect me.  The dad who loses it and makes demands of my daughter that should normally be made…"you need to be a better listener", "You need to be better behaved in the store"…you know, all of the things that we try to do in order to avoid looking like inept parents out in public.

I imagine (and hope) that there will be a day when I can sit down with Meara and apologize.  Apologize for all of the times that I let her down.  Apologize for all the times that I forgot that she has been through more than any child really deserves and that she continues on a daily basis to defy the odds.  That she is a warrior princess who has built this beautiful life from what seems to be sometimes…falling embers and scattered debris.  

She is our warrior princess.  I hope that there will be a day when I can sit with her across the table sharing coffee and explain to her that I love her more than words will ever be able to capture.  And that I'm sorry for all of the times that I got it wrong.  And to acknowledge the difficulty in this journey for all us.

She is our warrior princess…

Simple shades of things...and the complexity of it all.

Meara's been having quite a few seizures during awake hours now.  We might have shared that, can't remember honestly.  She is aware when they are coming and will typically bury her head into Megan's chest when she's having one.  She's having them in the car, in her chair at dinner time, and playing with Ainsley down in the family room.  

She's also been having so many during her sleep lately that she's been coming into our bedroom around 12:30am or so to sleep with us.  This has been going on for about a month or month and a half now…hard to keep track after awhile.  She's had five since I put her to sleep tonight which was an hour ago.

After Meara had one in the car with Megan last week she told her that she really wants to go the hospital to have her seizures taken away.  So, if that isn't affirmation that we are making the right decision for her…when then…not sure what is.

So, we are tired.  Been a busy cycle with her lately.  Seems like the seizures are taking over a bit.  We are almost a month away from her resection and it seems as though everything is telling us that we need to do this surgery. 

She's still got a lifetime ahead of her.  She's beautiful.  And challenging.  And lovely.  She draws every morning before school.  She's riding her bike without training wheels like a bat out of hell.  Our neighbor Matt always remarks how she rides her bike without any restraint.  Like she's got nothing to be afraid of.  Normally I'd be worried about the lack of restraint but then...

That's what I imagine for her…that she has nothing to be afraid of.  She's so energetic…and complex…and yet so simply…amazing at living in the moment.  I hope that her wonder, discovery, and difficulty in life is something that she'll hold onto.  That she'll live in a world full of imagination and magical territory.  I hope that she'll always dream and keep her sense of surprise and novelty close to her. I hope that her journey through epilepsy will be something that she doesn't see as a stigma but rather something that has given her a wisdom and understanding that will bring her shining stars against a dark night sky.  It might take her a lifetime to unpack…but she'll be stronger.  That is what I believe.

Surgery Date

Hi All,

We have a tentative surgery date of Wednesday, November 13.  Meara will be admitted that day and have resective surgery of her right frontal lobe.  It is one surgery (not like the two surgeries requiring grids last time) so she'll be moved to the ICU after surgery until she is stable enough to be moved to a room for recovery upstairs.  We should count on a week at least up there for physical therapy and for her head to start healing.  I imagine she'll be on the same big pain meds that she was on last time.  The morphine seemed to work the best.  I'll be taking a week and a half off from teaching and then I'll have the following week off for Thanksgiving break.  I'm hoping we'll be home by then but just in case at least Megan can count on me being off for two and a half weeks.  

Thank you for all of the positive thoughts and vibes mentioned to us in person, electronically, and felt in our hearts.  It makes a huge difference to focus on the good and have gratitude for what we have.  I think that Meara deserves the best Megan and I can deliver in terms of support and love.  It helps us remain strong for her when we have such a loving support system to help lift us up too.

She's been seizing a lot lately.  Just came off of a camping trip where I slept next to her in the camper and Megan and I noticed the seizures have increased a great deal.  She's also had several while awake which is not a common thing for her in the past.  Must be a sign that we are making the right decision to follow through with the surgery.

In the mighty words of the Milk Carton Kids…kinda says what this journey can be like most of the time:  "The road is winding and it's barely lit, you never know how far you're really gonna get.  But when you live here you just learn to get used to it."

So even though the road is barely lit and we don't know exactly what we will get, we will learn to get used to it…no matter what.  We hope, pray, and believe for seizure control.  No matter what happens Meara will be loved beyond measure and we will be there to embrace her and give her strength.  

Peace and love to everyone.  

Love, 

Aaron & Megan

Change of Plans: Surgery

We've been sitting on this update for awhile...to be exact, pretty much right before we learned of my brother's passing. I was going to post about this a whole lot sooner but Megan and I both needed time to process what we are about to share. Working through the loss of my brother was obviously a consideration as well.

So here goes: things have changed since our last post indicating our decision not to have another surgery for Meara. Back when we said no it was in response to the epileptology team saying that she would lose her entire motor strip that is responsible for her left side.  This is referred to as a complete hemispherectomy. 

A couple of weeks after we made the decision, informed her doctors, and updated the blog we received a call from Meara's neurologist with "good news". "Good news" meaning that her case went on to full conference (neurologists, neuro-radiologists, neurosurgeons, neuropsychologist, etc.) and they determined from the spect scans that they would only need to remove part of her frontal lobe with a strong chance of avoiding the motor strip. She would lose supplemental motor in her leg but that would come back - possibly in just a week or perhaps longer. But it would come back. 

So, we had our round table appointments with the neurosurgeon, physical therapists, and neurologists (during the month of July).  These appointments are part of the preparation for an anticipated surgery.  We asked a list of questions and I hastily typed the answers into notepad on my phone. The following is captured from those notes:

Q. What deficits do you anticipate? Transient weakness of foot and leg.

Loss of visual/spatial - reading maps, etc. Can be rewired because bilateral. 

Q. Would you take out out more of the area (equaling greater deficits) once you went in? Would try not to.

Q. How confident are you that this would provide control? 60% chance of seizure control.

Q. Would this resection activate another area? It could. 40% chance that it would not provide control and activate another area.

Q. Are her current seizures a result/consequence of cortical diplasia? Yes

Q. Should we try medical marijuana? We cannot recommend because of the absence of clinical trials. Too risky, not sure of long term side effects.

Q. How long can we wait to make the decision? No rush to make the decision.

Q. How long of a hospital stay? One week anticipated

Q. Therapy in home/out of home/ in school? Depends on outcome of surgery.

Q. Would she need a wheelchair? At first, yes. Supplemental motor area will affect both legs. It is transient loss meaning the motor function will come back.  Weakness will be temporary. Sometimes a week to get back, sometimes longer.

• Resection area affects visual/spatial, but bilateral. Will not affect memory - that's temporal.
• 10% chance that they could inadvertently cause damage to the part of the brain that they are trying to preserve (motor strip for entire left side of body).
• The tricky part for the neurosurgeon is working around/within the scar tissue from the previous resection.   He wouldn't have to remove as much of the derm this time around.

We also met with the neuropsychologist on July 31 and she did a complete assessment of Meara's development in preparation for an anticipated resective surgery.  She provided us six pages of in-depth, extremely comprehensive notes about her development but in a nutshell here are the major take aways:

• Her developmental progress is lower than before.  This is a direct consequence of the seizures and the medications that she is on.  Anti-seizure medications are designed to "slow" the brain down and as a result her brain is not being allowed to be as active as say one of her peers.  Essentially it is keeping her from staying on track and keeping up with expected learning benchmarks. The take away is that if the seizures aren't controlled, or even if they are controlled and she has to remain on medication her entire life, that she will have learning challenges in school and that her development will not follow the same track as her peers.  

• Meara has what is called visual field defect.  We expected this since the area of the brain they resected last August is the area responsible for this function.  Basically, her range of vision is limited on her left side.  So when she looks at a book she won't see some of the left side compared to being able to see all of the right.  She can turn her head to compensate but when it comes to reading she'll need to be trained/reminded to turn her head and start on the left.  It won't come naturally.  Also, she'll have to be taught to be extra aware in P.E. class - for example, when a ball is being thrown towards her, etc.  It could affect her ability to drive (maybe not depending on the severity of her defect) but as of right now she won't be allowed to drive due to uncontrolled seizures.

To say that we've been under some stress is kind of an understatement. If you are to ask if we are handling it well...it depends on the day. Megan is doing a better job than me. She's the one with the quiet strength and the ability to stay even. Thank goodness she's co-piloting this family with me. I'm feeling quite emotional at times but trying to stay grateful. Riding the bike as much as I can to keep the stress as far away from my body as possible. The biggest thing is...we don't want to screw this up. The teacher in me wants Meara to thrive and be successful in school.  The Dad in me is just grateful that she is alive and happy.  The key is trying to determine what course of action will give her the best quality of life from the choices of treatment that we have available to us.

A big change for us is that as of July 1st my school district revised our health insurance plan from co-pays to coinsurance. It is a significant change and we will meet our family out of pocket maximum with this surgery. The out of pocket maximum is a significant amount and it will have a much larger impact compared to the last surgery. This won't affect our decision because we are determined to seek the most effective treatment for Meara in spite of cost. I mention it because separate from the decision of having the surgery it adds another element of stress after the surgery is completed.

Megan and I have decided to go forward with a second resective surgery for Meara.  This was not an easy decision and has taken us almost two months to figure out.  The development information from the neuropsychologist was what tipped us in the direction of surgery.

From surgery we could gain seizure control and Meara could lose very little for it. Or, we could not gain control and she would hopefully still lose little. 

We wil be calling tomorrow to schedule the surgery.  We'll update the blog when we have some definite dates.  

Love to every single one of you. Still trying to stay positive. Generally speaking we are. But also being honest that the level of stress that comes with being a mom or dad in this situation is nothing that we could possibly ever be prepared for. So one day at a time I suppose.  And faith that we are making the right decision for Meara...

Love,

Aaron and Megan