Alan’s Army

All,

The below link will take you to the Professional Disc Golf Association website where they have posted a video story about Alan created by our friend, fellow BCDGA club member, and creator of the Disc Golf Monthly TV show, Kevin McGorry.  Much thanks to Kevin for his labor of love, and also a thanks to Carl “Cubby” Cubbedge for the great narration.

http://www.pdga.com/videos/alan-sweeton-story

Thanks,

Andrew

BTW – Shoulder operation went OK, typing one-handed is not so OK.

Hi all!

Alan is now nearing the halfway mark on his “boarding school” experience.  Things are going well and he is learning many things from Braille to cooking to riding buses and trains.  Last night they went to the movies (oddly enough to see “Blind Side”) and to experience a visually impaired system that provides spoken commentary on what is happening visually on the screen.  One of the provided classes is a college prep course and since Alan already has his degree, that time is now being used for him to do further work on his Braille lessons so he should be in great shape on that by time he graduates from the program.  Alan has now met and worked with a diverse group of students from those barely out of High School (18 is the minimum age for this program) to those who have lost or are losing their sight in their 40s, 50s and over, due to accident or various diseases like diabetes, MS, or eye disorders.  Alan has been voted in as Vice President of his class and has weekly meetings with classmates and staff to discuss discipline, class outings, graduation ceremonies, etc.  He is also having technology classes and once he gets to cleaning out 1.5 years of junk in his Liberty University email box he will be able to communicate with everyone himself.

The ultimate goal of the program is to find employment for the students  and provide resources to them and their employers to allow the students to be productive and lessen the burden on the taxpayer through social services.

On the medical front Alan’s latest MRI was again clear and the oncologist was happy with his general state of health.

In other news, I have shoulder surgery tomorrow morning to repair a torn rotator cuff.  It is arthroscopic surgery and if all goes well I will be home later in the day.  Your prayers are much appreciated.

As always, thank you all for your kind support and prayers and the Sweetons wish all of you a joyous and restful holiday season.  Happy Hanukkah and Merry Christmas!

God Bless,

Andrew

Hi all,

Yesterday was Alan’s 26th birthday and we praise God that he is here to celebrate it!
A shared birthday present for everyone in the family (Amber turned 18 on the 7th) was tickets to see Jeff Dunham the ventriloquist in Trenton on Friday night.   We had dinner with friends beforehand and the show was great, a bit crude in parts, but hysterical nevertheless.
Friday was a busy day as it was also Alan’s quarterly MRI and checkup with the oncologist in Philly.  The doctor seemed to think all is well and we should have the MRI results back by Tuesday or Wednesday.
Tomorrow Alan takes a big step and starts the 16 week program at the NJ Commission for the Blind in New Brunswick.  Its a live-in program so he will be there from Monday morning through Friday evening each week coming home only on the weekends.  Please pray for Alan and the staff that the time is well spent, he learns a lot, reaches new heights of self-sufficiency, and has new doors opened for him.

Thanks and God Bless,

Andrew

Greetings once again from an airport overseas - this time Charles De Gaulle in Paris (the land of edible snails and Bordeaux) en route to Nuremberg (the land of beer and chocolate.) As usual, my apologies that I have not written sooner. I had hoped that this message would have come from Alan himself but the new text-to-speech software has a very steep learning curve and it may be some time yet before he can work in email. Unfortunately my work is currently beyond insanely busy and recent free time was entirely consumed by preparations for our club’s big Pro/Am Disc Golf tournament last weekend.

Alan’s MRI I mentioned last time did come back completely clear – no reoccurrence!  Let’s hope that remains the same report for a long, long, time.The other report we were waiting on finally came back from the NJ Commission for the Blind (weeks later as they didn’t show up for the original appointment) and it was rather non-informative.  Basically they said that Alan is a bright guy who did well in his two week assessment and would probably get quite a bit out of their 16 week live-in program.  Like I said, not-so-informative.  So Alan is thinking about entering that program sometime in October after we get back from the United States Disc Golf Championships in Rock Hill, SC in early October.  It will be very strange for us to have him be gone M-F each week for that long.  He did enjoy his sessions at the commission during his two-week stint and one follow-on is that he is currently having a Braille lesson at home about once a week.

<Sorry, its now Friday morning and I just found the below on my BB unsent from my typing yesterday afternoon. Alan’s bloodwork was all fine, MRI results are due on Monday or Tuesday next week>A Quickie:I’m parked on a street in middle of Philly, just dropped Alan and Ginny off at the MRI place on Spruce St. After that we go over to the oncologist’s for a checkup.

Alan’s two week assessment with the NJ Commission for the Blind went pretty well. His case worker comes to the house on Tuesday morning to give us the results and next steps.

A piece of text-to-speech software called JAWS worked very well for Alan while there, so thanks to the hard work and generosity of Boy Scout Troop 46 we ordered that software as well as a laptop from Dell. Figuring Alan would be more likely to bump it off a table or spill something on it, and wanting it to last a long time from a productivity perspective, I speced-out and ordered a top-of-the-line and fully armored laptop (Dell E6400 XFR.) It wasn’t at all cheap, but my friends at Dell were very kind and got Alan a great price which reduced the hefty price tag by $2K. It is heavy and looks like it belongs on a battlefield (it’s actually ballistic armor) but it should hold up to any “accidents” that may occur.

Both the Software and Laptop have arrived and I just need to find time to install everything. Hopefully before long you will all be able to receive an update directly from Alan himself.

We were in Maine at Bear Spring Camps from July 4-18 and despite some lousy weather, it was great to be back there. The wildlife was abundant and we got some great photos of Ducks, Loons, Osprey, Great Blue Herons, and Bald Eagles. When I get some time I will give some photos to Larry to put up on the website. While there we played a little Disc Golf and spent time with our friends the Enmans.

<OK, now at doctors with MRI in-hand and we are waiting for the oncologist and bloodwork results.>

Amber arrived in Birmingham, England yesterday morning to start a 10-day missions trip with 10 other teens from church. After three such trips with Alan to Mexico back in the late 90’s, it is odd to now be a parent saying good-bye to Amber as she goes off on her own missions trip.

Please pray for safe travels for Amber and the group and that their efforts would be successful and bear fruit.

Another update forthcoming once we have recommendations from the NJ Commission for the Blind.

God Bless,

Andrew

Another great weekend!

Quick update, too busy with work for more. I’m actually at the park selling discs while typing for work. The laptop needs a charge in the truck so I figured I owed an update on Alan on the Blackberry.

On Friday, June 5th, we drove to Auburn, Maine for a weekend with our dear friends the Enmans and crew. A total of fifteen Bucks County Disc Golf Alliance members took the trip Down North to support our sister course/tournament. Saturday was the main event - The Dragan Disc Golf Championships - and Alan played all 36 holes. BOB Graham, was playing in the Pro division so Bob Enman, Gordy Adell, and Dave Townsend provided guide/caddy help for Alan while I attended to Tournament Director duties. The big winner for our group was Steve Agocs who won the Grandmaster Pro division, but everyone was a winner because all had a blast. Lots of folks camped on-site so we sat around and talked late into the night. Sunday was the second year of doubles match-play BCDGA vs Maine and once again Maine was victorious winning this year by a score of 5-4. A number of us went out that evening and saw UP, the new pixar movie, it was hysterical! We had a fantastic weekend, it was great seeing Alan play again, and we thank Bob, Nan, Kyle, Josh, and Gordy for their hospitality at Dragan Field.

On the way home, Alan, Stephen, BOB, and I stopped in Leicester, Ma. to visit our friends on Marshall Street - Jason Southwick at Pyramids and Steve Dodge and his family at Maple Hill - it was great catching up with them.

On the non-disc golf front, the Tuesday before the trip, Alan had a day-long assessment at the NJ Commission for the Blind in New Brunswick and he starts a two-week Mon-Fri training with them tomorrow. Luckily it is close to Ginny’s work so she can easily drop him off and pick him up each day. They will work with Alan on mobility, life, and technology skills. We are hopeful that the technology sessions will identify a good solution for Alan to allow him to get back on email and communicating directly with everyone. The hardware and software for the visually impaired can be extremely expensive so any help from the commission to target our purchases to what will work best will be great.

We are also blessed to have our old Boy Scout Troop reach out to help Alan. The troop had their annual strawberry festival fundraiser last weekend and the boys made an extra effort to raise funds for Alan for computer equipment. Imagine our shock and surprise when they told us they had raised $8,500.00! What a blessing! We are so thankful to Frank Mcveigh and the boys for their efforts.

I’ll write again with news about Alan’s training sessions.

God Bless,

Andrew

Wow! What a weekend! It turned out so much different than what I was expecting. I figured I’d attend the dinner for an event that Amber was participating in on Friday night, get up early on Saturday to help run a big disc golf tournament at Tyler State Park, and then simply crash on Sunday. Boy, did I not have a clue.Amber was participating in the American Cancer Society’s “Relay For Life”, an event where teams of walkers walk all through the night to raise funds for cancer research. The event also focuses on cancer survivors, so the entire family had been invited to a survivor’s dinner and “survivor’s lap” prior to the start of the fund-raising laps. Our dear friend, and workmate of mine, Nancy Raymond, was Amber’s team captain and her daughters (our nieces for all intensive purposes) Emily and Sami were also part of the team.The dinner was at 5pm Friday night, so I left work early, pulled into the driveway and as I was sitting in the jeep mentally checklisting (hmm, is that a verb?) what I needed to prepare for Saturday’s tournament, a van pulled into the driveway. At first I thought someone was picking up Amber, but then I realized I recognized the vehicle and it was in the wrong state. It turns out our dear friends Bob, Kyle, and Josh had arranged with Tournament Director John Birkrem to register for the tournament under fake names; had made sleeping and dinner arrangements through Amber with the entire Sweeton/Curtis/Van Nostrand/Van Liew clan, and had driven down from Maine as a surprise for Alan and I. What a fantastic start to the weekend!With them, Bob brought a big cooler of seaweed with 20 Maine lobsters nestled within it for a big family dinner, but since we had the Relay for Life event, we would have to put that on hold until Sunday, so we took the beer out of the barn fridge and filled it with seaweed and sea “bugs.”While the boys from Maine headed off to buy supplies at Wal-mart, we headed off to Montgomery High School for the Relay for Life event. And what a great, well organized event it was! We showed up and Alan was given a survivor’s medal to wear and a nice gift bag of goodies donated by local businesses. Everyone received a purple “Relay for Life” T-shirt to wear, and we had a nice lasagna dinner while listening to a touching survivor story. We then braved a passing rain shower and went out to the track for the walk. We heard a speech from the mayor, then a very nice motivational speech from a young women, aptly named Hope, who was diagnosed with cancer six years ago while in Montgomery Middle School and is now attending college. Then all the survivors, along with their families and caregivers, made a “survivor’s lap.” It was very emotional, but only a taste of emotions yet to come during this extraordinary weekend.Nancy had her team all setup with a big tent for snoozing between walking shifts and plenty of “fuel” (mostly Twizzlers - as the girls, and Nancy, all have an extreme affinity for them) to get them through the night. After spending some time with friends and neighbors in the festive atmosphere, Ginny, Alan, and I left for home with tears of pride in our eyes leaving Amber with her team to walk through the night to raise money for this important, and now personal, cause.Saturday was the Great Eastern Amateur Cup, the second largest tournament our club runs annually. This is a 90 player, Amateur-only, Professional Disc Golf Association B-Tier event. We were all extra excited about this year’s event as Alan was going to play, and hopefully finish all 36 holes. Saturday dawned bright and early with beautiful weather as I drove Alan out of the sack so we could stop in and check on Amber at the track before driving to the park. Nancy and the girls were tired but happy and still moving - way to go Team! As of this writing I have not heard any final numbers on how far the team walked, but I know Amber raised over $200 and the team raised over $2000. More emotion and tears from a proud Dad at Amber’s accomplishment as he drove off with Alan towards Tyler State Park in Newtown PA.Saturday was a beautiful day for a disc golf tournament. Our dear friend Bob Graham, a professional disc golfer and the NJ State PDGA Representative, acted as Alan’s caddy and guide. Bob helped Alan navigate the course, set him up at the tees, described the obstacles in his flight path, and waved a white towel so he could tell where the baskets were when putting out. Alan shot a 98 the first round and an 87 the second round. Alan’s last hole of the day was the dreaded hole 27, arguably the toughest hole in the layout as players had been taking 8s, 9s, and 10s on it all day, and even some 14s and 15s were recorded. With 75+ disc golfers and fans cheering him into the finish, Alan sank an awesome 20 foot putt to score a six! I was crying like a baby and I wasn’t the only one, as the spectators cheered for Alan and his accomplishment. Thanks to BCDGA treasurer Marc Brooks, you can see Alan playing the last hole. Go to our club website at www.bcdga.com and click on the videos link. Videos 17, 19, 20, 23, and 26 show Alan’s first 5 shots on hole 27 and video #29 shows him making the putt. It is very interesting to watch how Bob Graham was able to use a walking stick and visual queues that Alan could make out to help Alan to understand the types of throws he needed to make. The producer of disc golf monthly, Kevin McGorry, who had just finished his own round in the tourney, can be seen in Marc’s clips also filming Bob and Alan and we look forward to seeing that video as well.In the top division, Advanced Amateur, Josh Connell shot the hot score of 57 in the first round along with another of Alan’s good friends, BCDGA club member Erick Simonds and also two others. Josh also had the hot score in the second round with a 54 to win by strokes over Erick who shot a very nice 56 to take second place. After accepting his trophy and prizes, Josh stated that he had met his goal for the day which was to win in honor of Alan and then presented his trophy to Alan. Tournament Director John Birkrem also gave a very emotional speech as he presented Alan with a special “Role Model” trophy. The applause was tremendous as emotions ran high and lots more tears flowed. What an amazing day! John had run a great tournament, and after the players left and the faithful packed all the gear away, we sat under the pavilion and talked - no one wanted to leave the day behind.The next day we needed to worry about taking care of the 20 bugs in the barn fridge. As founder of the feast, Bob invited John Birkrem, John McGinley and family, and Bob Graham and Kit Basset to join the family clan for dinner. Earlier in the afternoon, Alan, Amber, Bob, Kyle, Josh, and I went to see the new Star Trek movie. It was fantastic even for a non-trekkie like me. That evening we had surf and turf - Bob’s lobsters, John McGinley’s London Broils, Ginny’s salads, and the Nancy Curtis’ cakes made quite a spread. We all pigged out and then played Dodgebee (a new game from Innova that is played similar to dodge ball, but with a soft cloth/foam flying disc) on the lawn until it was too dark to see. We then retired to the back patio to tell good, and bad, jokes and talk movies well into the night.It was a fantastic weekend of great disc golf, great food, great fun, and great friends, all crowned by the great individual achievements made by Josh, Amber, and Alan during the course of the weekend.At 7 am Monday morning we said goodbye to Bob, Kyle, and Josh as they took off to drive home. It wasn’t as hard as some of our past partings because we knew that only four days later on Friday morning, fourteen BCDGA members would be driving up to Maine to see all our Northern friends again for the Dragan Disc Golf Championship at Dragan Field in Auburn, Maine. I’m sure it will be a second weekend we will all recall with fond memories for years to come.Here’s hoping you all find time this summer to find the same joy in the best of times with the best of family and friends.God Bless,Andrew

Well, today was Cinco de Mayo - the fifth of May.  A day for latin revelry.  And like St. Patty’s day, a day that offers to folks of all ethnic backgrounds a reason to embrace things outside their own ethnicity with a great excuse for a good party.  Hello . . . tacos and cervesa!

Well, this Cinco de Mayo of 2009 brings something else to the Sweeton family.  Today is the first anniversary of that fateful doctor visit and MRI that lead us all down an extraordinary journey with Alan for the past 12 months.

I look back and my first thoughts are anger and sorrow.  I’m angry about all we had to endure the past 12 months - terrifying days; sleepless nights; inconsiderate health”care” professionals; drive here, drive there, drive every-damn-where; and the mind-numbing medical, insurance, and social services bureaucracies.  I’m angry about all that we missed like disc golf tournaments, parties, and  family vacations.  I’m angry that my son can’t see.  I’m angry that there is no guarantee that the cancer won’t come back again.

Past the anger is something much worse - sorrow.  My sorrow is mostly not for this past year, but for the future.  I grieve over things missed and to be missed.  I grieve over experiences for Alan that have lost, or will lose, dimension.  Going to a movie, but not really seeing it.  I selfishly grieve for shared experiences that will now likely never happen.  I grieve for opportunities, both the expected and the unknown, now lost.  I grieve over simple things like Alan not being able to enjoy a game of catch tossing a frisbee back and forth.

But, regardless of the anger and the sorrow I feel, I also feel positive emotions too.  I am thankful and I am joyful.

I’m thankful for our faith.  I don’t know how folks without faith go through something like this without the absolute deepest of despair.  I am joyful knowing that God indeed doesn’t give us more than we can handle when we can lean on him.

I’m thankful for the outpouring of love and support from family, friends, and complete strangers.
I am joyful in my understanding of the goodness in the people around us.

I’m thankful for workplaces, workmates, and bosses who let us do what we had to do to get Alan through this.  I am joyful in the better appreciation I have for those with whom we work not just as fellow travelers in the rat race, but as caring individuals.

I’m thankful for the sense of family and community we felt at every turn.  I am joyful that they stand ready and will be there in the future if needed.

I’m thankful for the healthcare professionals, from the lowest paid orderly to the highest paid doctor, who aren’t just collecting a paycheck, but are lovingly putting the “care” into healthcare.  I am joyful that they outnumbered the ones just collecting a paycheck.

I am thankful that Alan attended the monthly Bucks County Disc Golf Alliance meeting with me tonight and had a good time with great friends.  I am joyful that he will do so again.

I am thankful that as I type this sitting in bed, my son is here a year later, lying in his bed in the next room, enjoying listening to a book on tape.  I am joyful that he will learn more ways for technology to help him live a fuller life.

I am thankful that on the 30th of this month, Alan will play in the Great Eastern Amateur Cup.  I am Joyful that although he will do so with a much higher score than he once would have had, he will enjoy it nevertheless, and many dear friends will be cheering him every stroke along the way.

I am thankful that we will be able to again enjoy our family vacation in Maine this summer after missing it last year.  I am joyful that we won’t take it for granted and will therefore enjoy it all the more.

I am thankful that after a year of medical strife and an unusual amount of business travel for me, our family is stronger than ever.  I am joyful that regardless of the future, I know we will remain that way.

I am thankful that my daughter Amber can still get straight A’s despite all the lack of attention in her direction for the past year.  I am joyful in seeing the fine young woman she is becoming.

I am thankful that my loving wife Ginny leans on me for and giving support, even if I’m crying my own eyes out during a tough spell.  I’m joyful that she still calls me her rock regardless.

And most of all, I am thankful for my Lord and Savior Jesus Christ, who died for my sins so that I may have eternal life.  I am thankful that Ginny, Alan, and Amber know Him as Lord of their lives too.  I am Joyful that one day, regardless of when we each leave this earth, we will all be reunited in Heaven, and in our heavenly perfection Alan will again have sight, and we will again enjoy the simple pleasure of tossing a Frisbee to one another.

Thank you each and every one for your love and support this past year.  I am ever so thankful for you helping me to endure the anger and sorrow with my catharsis in writing to you.  Know that your support has brought us all great joy.

God Bless,

Andrew

Hey, I’m NOT in Frankfurt!

On Monday Alan had an MRI and visit with the oncologist in Philly. The office called late yesterday to tell us that the MRI was clear with no evidence of tumor and a decrease in enhancement so all looks good!!

All the paperwork has finally been received from the doctors and submitted to the NJ State Commission for the Blind and Visually Impaired, so now we wait for the wheels of bureaucracy to turn.

Thanks for your continued prayers and may God bless you and yours and remind you of that which is most important during this holiday week.

Andrew

Hello Dear Friends!

I am once again writing to you from the Frankfurt airport, this time on my way to Nuremberg, as opposed to on the way home.  I have a six-hour wait for my next flight, so it would seem a good time to finally write again.

Alan’s final chemo week was mid-February and it went very well with no nausea.  He is now done!!

Many, many thanks to the good neighbors at Schering-Plough who donated the $100,000+ dollars worth of chemo that Alan was treated with over the past 8 months.  What an absolute blessing!

Last week Alan had a basic checkup and lab work done at his regular family doctor to satisfy paperwork for the NJ Commission for the Blind and Visually Impaired.  Once the lab work comes back and the paperwork is submitted he will be scheduled for a two-week day-program “assessment” at their facilities in New Brunswick.  Luckily this is near Ginny’s work so daily transport won’t be too much of an issue.

We have not yet been fully briefed on what to expect from the assessment, but one potential outcome is a sixteen-week “live-in” program that teaches all aspects of living with his disability.

We are very much looking forward to an assessment of computer hardware and software to allow Alan to once again communicate via email which will be such a blessing for him!

In the meantime, Alan continues to spend much of his time listening to music and audio books.  Many thanks to everyone who has passed along audio books they have read for Alan to enjoy.

Now that the weather is improving temperature-wise, Alan has also “hired” his cousin Kyle from next door to help him spend half an hour each afternoon putting into the disc golf basket out back.  Kyle rattles the chains for Alan to hear where the basket is and then retrieves Alan’s discs for him.

Other News:

I should pass along that Renee is doing very well and looked like a million bucks when we saw her on Sunday.  Stan’s wife Diane is also doing well, although frustrated by the doctor’s less than comprehensive information concerning her mini-stroke.  Ol’Sam reports that his sister was having a very rough time with her heavy-duty chemo treatments but a special vitamin regimen she found from Canada has made all the difference in the world for her.  Thank you all for your continued prayers for these folks and we praise God for His continued blessings on them.

We also ask for your prayers for those that grieve the passing of a loved one.  The King family said goodbye to Josh and Caleb’s grandfather (Mary Louise’s father) on 29 January.  Joe Venanzi (my wonderful assistant) lost his mother on 11 March, and my Great-Aunt Dot Stanton passed on 14 March.  Please keep the King, Venanzi, and Stanton/Sweeton families in your prayers as they grieve the loss of their loved ones.

And as always, we thank you for your continued support and prayers for Alan.

God Bless,

Andrew