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