Monday, July 20, 2020

Quarantine Goals – Couch to 5k


The last time Byron, Bob and I were out in a crowd of people was Sunday March 1 for the Washington Heights 5K (3.11 miles) run in New York.  Byron ran it with his brother Ryan and finished it quite respectably. 



And then the pandemic began in earnest.

As we quarantined at home, even though it was relatively cold outside, I encouraged Byron to continue his running training.  Byron had mentioned that he might want to run track next year at school so training would be important. Every few days Byron would go out and run with the dog. One day I went with him.  I found out his “training” consisted of running full speed for about 100 yards and then stopping.  I knew that if another 5k or longer was in his future, we needed to develop a proper training regime.

I found an app called C25K which stands for “Couch to 5k.”  It promised to get you from sedentary to running a 5k in 8 weeks and what’s more, it was free!  I decided to not only encourage Byron to do the program, but that I would do it as well.

I ran track while in school but always the fast, short sprints.  I had tried to take up longer runs many times, but like Byron, I would run for 100 yards and then give up.  Now I was going to give it one last try.

Byron and I started the program on May 1, just as we were getting the most intense cabin fever after 6 weeks of lock down.

On our first day we were both euphoric.  It was so fantastic to be outside moving our bodies under the wide blue sky and just being with each other.  If you have a 13-year-old, you know how hard it is as a parent to spend any meaningful time with them in this digital age.  So this first outing was full of win-wins.  We talked.  We walked for 5 minutes, ran for 90 seconds, walked again and on like that.  The running part was tiring, and after the short runs we were both so grateful for the walks.  

Each week the training program upped the ante.  Byron and I both have apple watches so we could run the program on our watches.  The program would tell us via the watch, when to run and when to walk.  One day the program surprised us by introducing an 8-minute run in the middle of the week.  We both thought it was a mistake but sure enough, it was upping our game.  It went on like this for a few weeks. Along the way, I had many setbacks.  Not having run like this, ever, my knees ached, my ankles ached.  I almost gave up at least three times.   A couple of times we repeated a week.  Byron never seemed to have any problems and he was patient with me.  Finally, I found the right combination of knee “sleeves” (laced with some heat producing elements and mild support) and a single ankle wrap that alleviated all of the pain and discomfort.  We were now moving briskly through the program.

The eighth and last week was about to begin.  I looked at the map they were giving us for our first 23-minute run and realized that even by the end of the week, we would not really be at a 5k.  I wanted to be sure we could make it all the way.  Byron and I traced a solid 5k on the map, and at 6 am one morning, even before the app was calling on us to run such a distance, we took a leap and ran the course.  And we made it!   We ran our first 5k.  From then on, we ran without the app, and now we run a 5k before breakfast three times per week. We no longer speak on our runs, we both have our music, but we smile and cheer each other on.

One of the most rewarding things for me is watching Byron run ahead.  



He is a bit faster than me, yet even with his slightly awkward hemipalegic gait, it is a wonder to behold.  Flashing backwards 13 years to that fateful diagnosis day, wondering if he would ever talk, walk etc, I could NEVER have imagined I would be running with my 5’7” thirteen-year-old with the deep voice.  And running an entire 5k race three times per week!  

After our first 5K Run

Byron continues to be a wonder and I am so grateful that he is taking us on this great journey with him.

Thursday, April 16, 2020

Pandemic Thoughts



This morning as I was making my bed, a wave of sadness swept over me.  I thought: here we go again, another day inside, dark times around the world with no end in sight.  And then very gently, a quotation bubbled up inside “This is the day the Lord has made. We will rejoice and be glad in it.”  I don’t usually think in Psalms, so I sat down and let its message wash over me.  And in that reflection, I realized, This IS the day the Lord made.  This particular day, in the middle of a pandemic, is still God’s perfect creation, a glorious day full of wonder.  How I rejoice and be glad in it will depend on how I choose to approach it.  What will I learn today?  How will I find beauty?  How will I hold on to the sweetness of morning meditation?  How can I serve more fully?

Then I remembered when I was pregnant with Byron, my Spiritual Teacher Gurumayi gave me a red bracelet that said “Choose Happiness”. So I went to look at it. As I was remembering the joy of that interchange, the day she gave it to me,  I realized that these times right now, are the exact times when I must choose happiness.  Even when it’s really hard.   

If I look for it, it is there. The birds in my yard are so happy right now.  They are flitting around building nests, preening in the sunshine.  The squirrels are happily munching on seeds from the feeder.  My dog is snoozing in a warm patch of sunshine.  Perfection.  Happiness.  

Byron is flourishing in his virtual school.  He continues to be on honor. role, is healthy and strong, and a typical 13 year old. Our house is warm, comfortable and easy to be in for long periods of time.  We have abundant nourishing food.  And I am so spiritually renewed by the satsangs live streamed from the Ashram where I offer service. 

I realize that I also can pick and choose what I focus on in the news.  There is so much goodness everywhere right now.  Heroes are being made from these times.  True leaders are emerging. The creativity of the musicians, artists, actors is staggering.  And the sweetness of calls and Zooms with friends and family can’t be beat.

I was taking a walk with Byron the other day and I was truly enjoying the sun on my face.  A feeling of warm bliss overtook me.  I hadn’t remembered being so present to myself and my surroundings on a walk in a long time.  And on that day I realized that I am changing. I am slowing down. I am appreciating the tiny movements of life in ways that I hadn’t so much before.  I am appreciating my family, good health, and moments like these.

So onwards! I will Choose Happiness.  Every day, Each day, This day!





Saturday, November 9, 2019

Good Article about Hemispherectomy from The New Yorker

I'm glad I didn't read this before Byron's surgery.  It's the most detailed and graphic article I've read about Hemispherectomy.  It's from 2006.  Most people don't know that Ben Carson was a pioneer in this field.  From the article:

"No brain surgery is as dramatic as a hemispherectomy. “A hemispherectomy is the opposite of everything you are taught in neurosurgery,” Jallo told me. “You are told throughout your residency training to preserve the brain, get what you have to get, do your work and leave, but with this you have to take out everything along the way." 


New Yorker Article - "The Deepest Cut - How Can Someone Live with only Half a Brain"

Thursday, October 24, 2019

Brain Surgery Recovery...There is so much unknown...

The folks who started the Brain Recovery Project (amazing folks we got to know at last summer’s Hemikids conference)  just held a major meeting on hemispherectomy and other brain surgeries for epilepsy. It was groundbreaking as it included medical and science professionals as well as parents.

I am amazed at how little is still known about cognitive and behavioral outcomes after this surgery.  When we asked about Byron after surgery, “will he walk, talk?” all the doctor would say to us is "we don't know - probably."

 Here’s why...there is so little research about outcomes after epilepsy surgery. Yet more and more of these surgeries are being performed.

Here is the link to info about the meeting/conference.  It looks like it was a great step forward.

https://www.brainrecoveryproject.org/research/functional-impacts-of-large-resective-disconnective-pediatric-epilepsy-surgery/

Friday, October 11, 2019

Byron Excels in 7th Grade!

As we approach the two year anniversary of Byron's hemispherectomy, we were never more certain of it's success than last night at Byron's 7th grade open house.

November 3 marks the two year anniversary of  the surgery and of Byron being seizure free.  November 3, 2017 was the date when they disconnected the right hemisphere of his brain and changed him forever.

Just before the surgery we received a call from his 5th grade teacher.  She told us he was unteachable and could not learn.  Two years later this same teacher is his mentor in the LEO club where Byron does volunteer work for his school's community service program.  Last weekend Byron was a waiter at a benefit for a child with cancer.

Yes Byron is seizure free, but he is also more verbal, more social, makes great eye contact and can hold a back and forth conversation with more than one exchange.  And what is most remarkable is that he can focus.  Every teacher since kindergarden  has talked about his lack of focus and limited attention span.  Yesterday as we approached  Byron's math teachers, Byron's most challenging subject, we expected to hear the usual, "The problem is he rushes, can't focus etc."   This was the case even last year.

As we sat down, the first thing the teacher said was, "Byron is so great.  His class participation is amazing. Whenever we ask a question we can alway rely on Byron to raise his had and try to give the answer."  She went on to say "And Byron's FOCUS is incredible!  He can really stay on task."

Bob and I both shook our heads and said, "Wow! That is really quite remarkable."  Both math teachers asked why we would say that.  So I took a deep breath and told them the abbreviated version of Byron's story.  Both teachers had moist eyes and one said that she had chills all over her body.  They were so grateful that we told them.

It seems that Byron has made the transition to middle school with great aplomb.  In his progress report he is getting above 80 in all classes, including math.   The other remarkable thing is that he is getting a 97 in PE!  We met his gym teacher who is a truly wonderful man.  I said to him that for a child with a disability, gym can be torture.  The gym teacher was clear that Byron is doing wonderfully.  He tries everything and when he can't do it the teacher makes modifications. We also learned that there is an adaptive PE program, but Byron excels so much in regular PE that they have kept him there.

Every teacher we met said how kind and happy Bryon is.  The assistant principle said how much he enjoys seeing Byron in the halls as he is always smiling.  Again, this was not so before the surgery.  I remember Byron's 4th grade teacher saying she wished Byron would smile more in school and be happier.

Any doubt we had about this school are completely gone.  It is absolutely the right place for Byron.  And we are so very happy to see and hear how well he is doing from all these fresh eyes.  In many ways we weren't even aware of how far he has come, as the change is incremental to us.  But seeing it reflected back last night was quite remarkable.  So many blessings!

Tuesday, August 21, 2018

Demonstration Child

Today Byron was the demonstration child for a large gathering of Physical Therapy professionals/students at the Center for Discovery in Hurleyville.  He delighted the students by singing songs for them while he was being treated.
















Byron sang an excerpt from the opening of Sponge Bob the Musical at the end of the session.



And finally, one of the therapists attending today, worked with Byron in Ithaca when Byron was four. She let us know about the death of a very special person: 


RIP Kathy Schlough - 1952 - 2018


Kathy was Byron's first therapist after his diagnosis.  She had been the head of the Physical Therapy PhD program at Ithaca College and had just left there because she missed working with children directly.  She was an invaluable guide, friend and mentor during the early days of Byron's diagnosis.  She was an amazing artist and we have two of her paintings in our home.  We were stunned to learned that she died from cancer in May of this year at 66.  Dear Kathy, you will be missed by the hundreds of children and their families for whom your calm and steady presence was a great comfort.





Quarantine Goals – Couch to 5k

The last time Byron, Bob and I were out in a crowd of people was Sunday March 1 for the Washington Heights 5K (3.11 miles) run in New Yo...