Monday, July 21, 2014

Blessings from Boston!

Saturday was an emotionally challenging day. The morning began with unbridled excitement about what awaited us in Boston. As the day went on I started to feel the light of opportunity shift into fear and darkness. Family filtered through all day and Zacchaio's goodbye hugs were noticeably tighter, his kisses longer, and his goodbyes more heartfelt and full of love than ever before. I suppose in the back of my mind I always knew there was great potential for Zacchaio never to return home, but the gravity of that reality hadn't hit me until I watched each person say goodbye. We had worked so tirelessly to advocate for Z, and I believe I was still riding the high of our success in accessing the best neurologists and neurosurgeons in the country; it very abruptly grew real for me. Seeing the way our families were with him made it clear that it was also very real for everyone else.

 


I suppose it was perfect timing then, to come across a song that was able to transcend my doubts and re-inspire my hope in Zacchaio's future.




"3 Things" by Jason Mraz & Raining Jane


"There are three things I do when my life falls apart
Number one I cry my eyes out and dry up my heart
Not until I do this will my new life start
So that’s the first thing that I do when my life falls apart.

Oh, the second thing I do is I close both of my eyes
And say my thank-yous to each and every moment of my life.
I go where I know the love is and let it fill me up inside
Gathering new strength from sorrow,
I’m glad to be alive.

Things are looking up
I know above the clouds the sun is shining
Things are looking up
Love is still the answer I'm relying
On
Three little things
Things are looking up

The third thing that I do now when my world caves in,
is I pause, I take a breath, and bow and I let that chapter end.
I design my future bright not by where my life has been.
And I try, try, try, try, try again.
Yes I try, try, try, try, try again.

Things are looking up
I know beyond the dark the sun is rising
Things are looking up
And I know above the clouds the sun is shining
Things are looking
Love is still the answer I'm relying
On
Three little things
Three little things"

It just so happens that Aidan's cousin, Chaska, is a member of the band Raining Jane who co-wrote Jason Mraz's YES! album and are currently performing the new album with him. So many of their songs resonated with our current life situation, but this one has earned the right of "repeat" status.


The first flight in Zacchaio's lifetime was a Saturday night redeye to Boston to be evaluated for brain surgery. He did wonderfully! JetBlue was kind enough to upgrade us all to premier seating at no extra cost which allowed Zacchaio his own seat and increased comfort for all. With Christ in our pocket the entire way, we landed safely.
Photo: And we're off to Boston! Hopeful and seeking miracles with Christ in our pockets...






We flew across the country in hopes of innovation and opportunity... and now we wait with bated breath for time and expertise to exert their influence. 

Zacchaio's 72-hour EEG started on Sunday afternoon and following its completion he will have a brain MRI. While we don't have any official results in the first 24 hours, we are enamored with Boston Children's and their complete embrace of our mission on behalf of Zacchaio. All of the neurologists and neurosurgeons we have spoken to agree that there is a malformation somewhere; it's just a matter of finding it. According to a neurosurgeon at UCLA we sought out for additional opinion, he could have malformations in multiple lobes within his right hemisphere. I never thought in my wildest dreams that I would pray for an MRI to find a malformation in my son's brain; locating it allows us a more discriminative way of treating Zacchaio's seizures. I mentioned in a previous post that we also plan to obtain input from the Cleveland Clinic. Fortunately, we have the opportunity for an online consultation where all of Zacchaio's tests and imaging can be evaluated by experts in the field of Epidermal Nevus Syndromes without the need to fly to Ohio! We have started the initial process and should hear back following their review of all Boston tests and imaging results. In trying to maintain the new balance Aidan and I mentioned in our last post, Alkaio and I connected on Skype for a transcontinental jam session. Multi-tasking at its finest...


We're learning so much through this entire process that to put all the lessons into words would be impossible. In this moment I am reminded that love, especially that of a parent, is infinite and unyielding. We will be defined not by the outcome of this life experience, but rather by the relentless pursuit of our son's life.

2 comments:

  1. WOW that is all I can say, WOW. That song you posted gave me goose bumps,, so inspiring, and really beautiful, I love the harmony. You guys are so brave and strong, and positive. I know it is hard to be that way all the time, but you sure do a wonderful job. I'm so glad that you are getting good support in Boston from the doctors. I PRAY that the results or the tests will give them the information they need to help little Zacchaio, and make things better for him. Good luck, sending lots of love and hugs, and lots and lots of prayers. Connie Khanachet

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  2. Dear Mr. Thiele and lovely wife, Alexis,
    We have been down the road you are now traveling. We would very much love to get together and share our support for your family. Your baby is clearly in the very best hands and there are top specialist at UCSF as well that we can recommend. Your approach of one day at a time is wonderful;) I have contacts to many resources that we can give you and maybe when you get a chance can contact us. We have actually met you, Alexis, at the movies one night and Mr. Thiele is still hands down one of the very BEST Teachers our son Matthew has ever had so we have every intention of helping you in any way we can.
    Much love to you and your sweet boys��,
    Juliet & Don Barraza
    PS. Is there a way I can send our information in a private message?

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