Georgia/ Florida

Training Update:  Brian has had a short break from the pool.  His birthday, as well as a number of other October obligations, have made the training schedule a challenge for this month,  He has still done some treadmilling and continued with his stretches and exercises.    Back in full force in November.  

This upcoming Saturday, he will miss his training because he has been asked to represent UGA Miracle at the Florida/ Georgia game in Jacksonville FL.  

This game is always a huge one, despite the team records.  A large stadium split in half.  UGA fans on one side, Florida fans on the other.  These fan bases do not like each other. (understatement of the year).    

One unifying thing about both schools is that they both have a Children's Miracle Network Dance Marathon.  Combined, college students from these two Universities raised over $4 million in 2017 dance marathon activities.  How does that compare to what you did as a college student?

We have been involved with UGA Miracle for over three years.  Trust me when I say that the fundraising is not nearly as impressive as the way that this organization has embraced many families including our own. Brian is treated like a rock star by the students.  Don't believe me?  Check out his talent show performance this year. (this video never gets old)

So the Ga/FL game recognizes the fundraising and family relations accomplishment of these student organizations by letting each University invite one family and recognize them. This year, Brian and I will be on the sideline for the first quarter, and the recognition happens between the 1st and 2nd quarter.  If you are at the game - wave. I will post some pictures.  

  

Brian, as always. is so pumped to see his UGA friends at the game.  He is also excited to possibly meet the family from UF as well as UF Students.  If anyone can unite these two fan bases, it is Bmoney.  

In the mean time.   Gooooo Dawgs.  

Read my reflections on the 2017 UGA Miracle Dance Marathon.

Training begins: Stamina

Thankfully, the test that Ben, Brian, and I have to pass is not timed.  

The test includes a 75-yard swim using sidestroke, breaststroke, trudgen, or crawl.  IThe test concludes with a 25-yard swim using the backstroke.  At least one hard turn is required.  After that, you have to prove you can rest/ float on your back in the water.  

A large challenge for Brian will be the requirement that all of this must be done without a break.  

A few years back, I posted about Brian's challenge of climbing Stone Mountain.  It was a huge accomplishment.  He would go a certain distance up and come back down.  Eventually, he got to the top.  It was a wonderful accomplishment.  In his hikes, he had to take many breaks. He has more stamina now, but he still likes to take breaks.

It is mind over matter, to a point.  If you think you can swim 100 yards non-stop - you probably can.  If you don't think you can swim 100 yards non-stop....no dought that you won't.  So - for Brian - we need to get him to not only have the stamina but also the confidence.  

He had a swim practice on September 23 at Agnes Scott.  It was a start for him.  THe instructors are certainly all on board and ready to help him  

September 30 Treadmill:  

Treadmill at home 21 minutes.  Not sure of the distance.  

September 30 Swim at Dynamo Swim Club in Johns Creek.

1:   Touching deep end and coming back.  

This is something Brian has not done at all.  Our focus has been swimming and not sinking.  This was the first time he ever really intentionally went to the bottom of the deep end.  It means a strong swim underwater to get to the bottom, not just a "let yourself sink" 

2:  Retrieving an orange cone from the deep end.  

The orange cone in the picture was at the bottom of the deep end.  The instructor told Brian to retrieve it.  he tried with his hands, but it was a challenge.  He did grab it with his feet and pulled to the surface.  it was upside down, so when he got it to the surface, it was like trying to pick up a container of water with 7 gallons in it  The water did not drain fast. It was an interesting challenge.   

3:  Attempting backstroke for the first time.

It was the first attempt.  Swimming requires multiple body motions at once.  Brian did a good bit of weaving back and forth.  He also cheated a bit by continually touching the bottom of the pool in the shallower end.  he has to work on kicking and laying on back.  His legs kept going deeper, which made it harder for him to swim. 

4:  Swim a backstroke with a ball on the forehead.  

This added another element.  Some of the other swimmers were doing this as part of their training.  At times he was able to keep it on.  However, the focus of breathing, kicking, and arm movements were enough to keep Brian busy.  Adding the ball for focus may have been just a little bit much for the first time doing the backstroke.  

5:  Challenge:  Do a full lap (50 Yards) in five minutes.  

As I mentioned, the test is not timed.  Brian sometimes needs a challenge.  He enjoys being social.  Sometimes will fiddle around instead of staying focused on a task.  However, when you give him a challenge, he will try to overcome it. Going up Stone Mountain was a challenge.  Heck, learning how to walk again, that was a challenge.  The challenge of swimming 50 yards in 5 minutes is not as monumental as those.  He did it in 3:40. He did stop and touch the bottom a time or two, but he did it.  

6: Do 4 laps...3 freestyle, one backstroke,

This is, in essence, the BSA test.  It gives a base point.  He stopped after each 25 yards.  More stamina is needed.  Also, the way Brian swims is not your typical stroke.  He overcompensates with his right hand and leg. Doing this will actually cause someone to tire out quickly.  Imagine swimming with one arm and leg as extra weight in the water. For Brian he has to consciously think to do things like kick with both legs or open his left hand from a fist.  He also has to think to breathe.  His pattern has pretty much-been swim and stops everything to breathe, not just take a breath as you take a stroke.  They have worked with him on this.  Not a skill he will need to pass the test, but it will help in keeping the stamina.  

7:  Float for a minute:  

Brian and coach Sam

Attempt to stay floating on the back for 60 seconds.  Brian completed 2 attempts.  First was 27 seconds.  The second was 47.   

. 

 October 1: Popcorn!!!

The Scouts sell popcorn.  During the past 2 weekends, Ben and Brian sold popcorn at Holy Cross Catholic Church. They will each get a commission from the hard work they did that will go towards the funding of the trip.     







Conclusion:  
Good Start.  Hard word ahead.  However, good things are going to take place.

Brian's Rio: Florida Sea Base

I have wanted to share this post for some time.  I have been hoping and planning this for some time. Some things just got confirmed, so I can now share.

Ben and Brian are both members of Boy Scout Troop 15 in Atlanta.  Officially in the Hightower Trail region.  As part of the Scouts, Ben has participated in two of the BSA High Adventure trips.  So far, he has successfully completed challenging time in the boundary waters of Northern Tier in Minnesota and hiking of Philmont Scout Ranch in New Mexico. If you are fortunate enough to make it to all three, you officially earn the Tripple Crown patch.  Ben will earn the Tripple Crown distincion in April 2018, as he is signed up to go to Sea Base in the Florida Keys.

I had the honour of going to Northern Tier with Ben as an adult leader.  The Scouts earned a 75-mile patch for canoeing and portaging a very long way in a 6 day period.  It was an amazing experience to be with Ben and the other Scouts as they accomplished, endured and learned so much.

At Florida Sea Base, Ben and the other Scouts will be sailing, snorkelling, exploring islands and sleeping at large sailboats. Yes, I am an adult leader for that trip also.  Anyone that knows me knows that spending a week in the Florida  Keys is something I'm always willing to do.  Going with my son is a dream come true.  I am so excited about this trip.

So if you don't know the story about Brian, read my post here.  His chances of survival, much less his ability to walk, talk, eat or be conscious ever again, were pretty much nil in December 2011.  No sort of a quality of life was possible at that time.

Many many amazing things have happened for Brian and all of us since that month.  Books have been written.  Today, I can't think of a better way to celebrate the quality of life than spending time in the Florida Keys.  If only Brian could go to Sea Base also.  However, his swimming is currently likely not going to allow him to pass the required test, plus he was about 45 days too young.  The requirements said that you must be 14 years old by September 1, 2018, to attend the trip.  Brian will not turn 14 until Oct 14. The guidelines said "no exceptions....don't even ask"

Brian has been involved with an organization called Blaze Sports. He has been involved with an adaptive swimming program for 3 years.  Our goal was to get Brian to be a good enough swimmer so he would not sink if he fell into deep water.  It has been pretty amazing to share the pool with so many inspiring kids.  Some that have even competed in international competitions including the Rio 2016 Para Olympics.  Our goal has been surpassed.  Our comfort level around the water is so much better than it was.  Blaze Sports is the main reason why.

In the past few weeks the following things happened:.
-A spot opened up on the Troop 15 team to Sea Base
- Sea Base changed age requirements that would allow Brian to go.
-Hurricane Irma sparred Florida Sea Base enough that they feel pretty confident that the April trips will continue as planned.
- We signed Brian up for the spot.  For a boy that had no hope of any quality of life, a sailing trip to the Florida Keys and experience one of the Boy Scouts High Adventure trips seems like a monumental accomplishment,.

To be eligible, Ben, Brian, and I must "Strongly" pass the BSA swim test.   For Brian, that will be his new Blaze Sports goal.  It will be a challenge that he will have to work hard to get.

Also, a challenge that we all face is the ability to climb up a latter from the water onto a boat.  Though it is not a formal test, we have been informed that this is something that Brian will need to do on his own.  With his Physical Therapists, Blaze Sports and friends with boats, we feel that we can overcome this challenge as well.  These things will be tough but achievable.

I do not expect that Brian will be competing in the Para Olympics in the future.  However, if he is able to accomplish the goal of attending a BSA High Adventure trip, weel, that would be his Rio.

I plan to Blog about Brians progress on this goal. Prayers are very much welcome.  The trip is scheduled to happen the first week in April 2018.

Reflections on UGA Miracle Dance Marathon 2017

From 10:00 am Saturday February 18 to 10:00 am Sunday February 19 we as the Murkison Family were one of 72 Miracle Families that participated with the UGA Miracle Dance Marathon (DM).  In that time frame, these college students raised $1.35 Million that was donated to Children’s Miracle Network (CMN) via Children’sHealthcare of Atlanta (CHOA).  Our first DM was in 2015.  That year they raised 683K.  They almost doubled in 2 years.  Certainly impressive.   That number is easy to put in a press release or a website.  However – I must say that $1.35 Million is just one of many things to be impressed about.  Below are the items that are equally impressive if not more IMO:

Miracle Families  

Perseverance:  That is the best word to describe the 72 families that had been helped by CHOA participated.  Any that wanted to share their stories did.  The students and other family members were very respectful and engaged to the stories.   I don’t recall the actual scientific diagnosis of most of the stories, but I remember the stories.  One child, named Parker, is about 6 now.  His story was featured.  When he was born – he had an ailment that pretty much meant that he had a much smaller than normal brain.  Somehow brain fluids were filling his head so much that the brain itself could not form properly pre-birth.  CHOA saved his life and Parker is now thriving.  He runs around and is friendly – and very very energetic.  At the opening ceremony of DM – Miss Georgia gave a welcome.  Parker, came up and in front of the 3000 in attendance, He politely asked Miss Georgia to come sit with him and walked her back to where he was.  Of course she went with him.  We have met that child's family a few times.  They are amazing.  

Another Child was treated at CHOA years ago.  He now sells Ice cream.  Beau Shell is known as Little Ice Cream Dude.  He is a young entrepreneur now.  Beau Shell had an ice cream stand at the DM.  The revenue he made that day went to UGA Miracle.  It turns out, Beau was UGA Jr. Homecoming King this past fall.  

Brian and Beau Shell, "LIL ICE CREAM DUDE"

One family that I met for the first time was the Trip Halstead family.  Trip was only 2 years old in October 2012.  He was playing outside at his daycare center when a large branch from a tree fell and hit him.  He acquired a TBI.  His mom and dad, (Stacey and Mike) have had a very public journey of his recovery since then.  The story has been all over the Atlanta news as well as nationally.  The Facebook page they have created has over 1 million followers.  The way they have handled everything has always been an inspiration to me.  So – it was an honor to finally meet them.

With the Halsteads

We got to know the Hopkins family last year.  Kelli and Mike are the most amazing parents.  They have had four kids.  Three have had special needs.  Sadly, Abe and Mary Elizabeth passed away in 2014.  We met Micaela and Marlee Ann at DM16.  Brian got engaged to Marlee Ann at DM16.  That engagement lasted a few months.  They live in Covington.  For about 6 months, Brian wanted to go to Covington every weekend morning.   We actually did a time or two.  Marlee Ann is 14 right now, and has raised $55 for UGA Miracle.   That is $55,000.  She helped to motivate the group to raise $50 In a 20 minute period to match her total.  The Hopkins spoke Sunday morning.  Awards were presented in honor of Mary Elizabeth and Abe.     

Brian and Marlee Ann - from 2016 Dance Marathon

Brian Photo Bombing with the Hopkins and Hopkins Family  and Family Pals  (Courtesy of Kelli Hopkins) 

We gave our story, and had a very positive response.  My sister happened to be in Athens and came to see our story be told.  It was great having her around.  When we finished, a student came up to me and said she was from Statesboro and that the story triggered some memories for her.  She remembered the story when it happened.  We were able to hear stories from other families we knew from camp TBI as well as thru previous CMN/ DM events.      They set up a family break room, and so family members got plenty of time to get to know each other.  

Theses stories really put things in perspective.    Perseverance and inspiration is something that all of these kids have plenty of. 

Life is short.  4% is not enough:

In 2016 – two kids that were at the DM lost a brave fight to cancer within a few months of the event.  They were both walking around celebrating, sharing, and entertaining in February.  By May – they had passed.  Both were cancer warriors. 

Both families have made public campaigns that only 4% of federal cancer research dollars go towards pediatric or children’s cancer research.    We all know that 4% is not enough.  Grant Gossling was one of the two.  He was a 4 years old boy running around in a cape at DM16.  His family came to DM17 and shared.    UGA Miracle gave an award in Grants Honor.  The Gossling family has created a foundation.  You can link to it here: 

High Expectations.

UGA Miracle raised just over $1 million last year.  Every year the main emphasis of the donations has been the CIRU.  That is the department that we lived in January –February of 2012.  The Therapy gym in the CIRU has now been named the UGA Miracle Gym. 

This year, they made a commitment to raise even more than last year.  Anything above $1 million total would go to the Aflac Cancer Center at CHOA.    

Brian being Bmoney:

Brian has an ultra-ego.  He goes by Bmoney.  I really do not know how it got started.  However – most people at UGA Miracle may say they don’t know anyone named Brian Murkison.  With all the kids that participate, I can see why it would be difficult to know every single one of them.  However – if you say Bmoney, and everyone knows him.

Since it was our third year, I knew that we had a lot of eyes watching out for him.  He would often disappear from my sight.  I never worried about his safety, but felt like I needed to at least know where he was.  Most of the time, he was hanging out and taking pictures with a different set of UGA girls.  They were all taking selfies together or laughing at his jokes. 

Knowing that this group of people love Brian….err..i mean Bmoney was an awesome feeling as a dad.  He was pretty much treated like a rock star.  (See the talent show.)    At one point, of Bmoneys new friends started counting the hugs he gave.  In a one hour period, he gave 168 hugs. 

Talent Show: 

Certainly my favorite event memory was when Brian belted out Journeys “Don’t Stop Believing” in the first talent show.  Brian had about 1000 students watching and singing along.  Most of them got their phone lights on and swayed to the music as well.  In the video below you can hear the cheers for Bmoney.   It is worth a watch!!!!

I think about 9 other Miracle kids performed such things as dancing, joke telling, being a human pretzel, and other singers as well.  One of the moist courageous was a 12 or 13 year old girl that got up and said that she was singing a song in honor of one of her friends from camp that had passed.   I assume that it was a Camp Twin Lakes type camp and that the friend had similar health situations like her.  The song was Ed Sheerans song “Photograph”.    This girl bravely fought back the tears and showed so much bravery in the heart felt words of this song.  I don’t think that anyone that watched it had a dry eye. 

Family Pals:

Our first DM – we had Ashlyn Belding and Peri Levey assigned to us as family pals.  They are students that were assigned to us to hang with us during the DM and also encourage us to come to other events throughout the year.  The second year, Cooper Drose joined us.  This year, Ashlyn and Peri moved to some other leadership roles with the organization.  Caroline Beldon and Lilliana Bardi joined Cooper as our family pal.    These students have become part of our family now.  They have traveled during breaks to visit Brian.  They have also attended concerts for Ben in Athens and hung with us during all of our antics at Braves/Hawks/ Zoo Days/ Trunk or Treat and other times.  Ashlyn and Peri are about to graduate, but we plan to keep in touch.  We are proud and honored to be associated with all five of these wonderful students.    

Peri Levey, Brian, Ashlyn Belding

Lilliana Bardi, Brian, Caroline Belton, Cooper Drose

Run by College Students: 

The President of the University gave a welcome.  Some administrators of the University came and witnessed or are a part because they are Miracle family members.  Outside of that – everything was all about the students.  UGA Miracle has events throughout the year.  The correspondence for the families for the Braves game, the Trunk or Treat, the complex schedule of the DM, the AV for talent show, the coordination with family discussions, the finance folks, all full time students.    I have worked in higher education administration for almost 20 years.  I am not surprised by what students can accomplish.  Certainly the organization as a campus advisor and some required administration.  By all accounts, it is student run.    They have many different committees to join.  They include; Hospital, Finance, Family Relations, and many more.  So – no matter what your skill or desired activity, this has something you can do.  Not sure the number of students that are a member of UGA Miracle.  However, the DM had over 3000 registered students.   

Some of the many students that put this on.  (Photo by Kelli Hopkins) 

330 Nation Wide

So – the Dance Marathon for CMN has been going on at UGA for 22 years.  In 2017, a total of 330 Colleges and Universities are hosting one.  At the same time as the one at UGA, 33 others were going on.  In the next few months, we will be participating in one at both of our employers.  Georgia Tech hosts one on March 4, Georgia State will host its first ever DM on April 15.   We are very excited to participate in these.    

Standing Challenge:

The marathon is 24 hours long.  Many students decide to commit to also participate in the standing challenge.  That is – no sitting for 24 hours.  You can kneel, lean, crawl, but no sitting for 24 hours.    We left Saturday night at around 11:00 pm, and came back Sunday morning around 7 am.  By that time, they had been standing 21 hours.  I witnessed some very creative kneeling and leaning at that time.  Kudos to everyone that did that.   

Faith:  

The organization is solely focused on fundraising and interactions with family and the hospital.  It does not have Christian or religious roots.  However, many of the family members mentioned their faith in God during the presentations.  God is the ultimate healer.  Certainly he had a hand in the recovery and healing of all these families.  That includes ours.  God has a plan for us, and I think he helped lead us to finding this wonderful organization.   

CHOA Hour:

At one point, many CHOA doctors and staffers showed up.  Brian got to see many of the people that helped him in the early days including his Doctor as well as the Music Therapists and many others.  He also saw staffers from the Robotics lab that continually work with him today.    A great way for Brian to say thanks – and great way for CHOA staff to say thanks to UGA Miracle.  

Circle of Hope

Words truly cannot do this part of the event justice.  It is the final event.  After the total reveal, they have all 72 of the families in the middle of a circle.  The students all got a hospital wrist band put on their wrist when they checked in on Saturday Morning.  The families all take a pair of scissors and cut off the wrist bands for the participants.  Lots of symbolism here.  I realize that I can in no way come up with words to explain the emotions at this point of the event. It doesn’t seem to make sense that just cutting off wristbands can cause such a feeling.  I assure you, it does.     

Other Amazing things that happened 

-         In a very unexpected turn of events, one of the Nurses at Ogeechee Area Hospice that cared for Brian in the darkest of days stopped by.  Her son is now a student at UGA, and her Niece is our amazing family pal Ashlyn.   I cannot imagine what her thoughts were seeing Brian (Bmoney) doing his thing. 

A good friend and former supervisor of mine is now an administrator at UGA.  Her son is one year older than Brian.  She followed our story from the early days.  She had shared stories of her son praying for Brian.  Michelle moved to Athens in May.  She met Brian in October, when we came in town for the UGA Miracle Trunk or Treat.  She brought her son Jackson as well as her husband to see our family story talk Saturday night.   After our talk, Jackson and Brian spent a long time chatting.  Jackson wrote a social media post about Brian latter that night.  Michelle shared it with me the next day.  What was cool was that one of Jacksons friends saw the picture, and realized she also had met Brian.    Brian invited Jackson back for the reveal the next morning.  He came.  Jackson and Brian did everything together the next morning and convinced all the parents involved that we should go get burgers after the DM ended.  I do believe that Jackson and Brian bonded.  

Brian and Jackson Howard (photo by Michelle Howard) 

In Conclusion: 

The entire experience was awesome.  In no way can I capture all everything in this post.  When you participate in something that is bigger than yourself, the rewards are bigger than your expectations.  When I see these students doing what they do, and hear the stories of these families, it makes me want to do more to make the world better.  It gives me hope for the future and the realization that many wonderful people exist.   You hear all sorts of things about millennials.   Next time you hear someone criticize millennials, ask them if they ever stood for 24 hours and raised $1.35 million dollars for anything.  Can you imagine, these students are doing this at ages 18-22.  What will they accomplish when they are 30 or 40?  

Thank you UGA Miracle for allowing Bmoney and all the Murkison family to be a part of your wonderful group.