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Archive for the ‘Reflections’ Category

Happy Thanksgiving!

At the start of such a crazy time of year we hope that you are able to take some time to reflect on what you are thankful for.  We are thankful for so much that it would probably take up your entire day just reading, so we will touch on some of the most poignant!  Life is so precious we couldn’t miss this opportunity to send out our thanks to all of you!

First and foremost we are thankful for our family and friends!  We would not be where we are today without all the support we receive.  On the eve of yet another ALS friend’s funeral to attend, we count our blessings that Steven is still doing as well as he is!  Christopher, the light of our life, is thriving in his new school environment.  Jennifer is able to run Extra Hands and also go back to school to pursue her calling in life. We can only pray that we can give back a portion of what we receive.

We count our blessings that we live in a country that we can believe in whatever we want without persecution and speak publicly of those beliefs.  We are free to worship what we believe in or not to worship anything. We can have the comfort working for corporate America or delve into entrepreneurship.   Our freedoms should not be taken for granted.

May each and every one of you enjoy this incredible day and see the blessings, whether you are able to be with family and friends or just have a quiet day to yourself.  So from our family to yours, Happy Thanksgiving!

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One month has blazed by since the Angels for ALS Gala 2007.  Time seems surreal to me, knowing I am outliving ALS expectations.  It also confirms that time appears to accelerate the older we get!

The evening was a very elegant and classic event.  It was an enchanting site to see everyone dressed to the nines at a beautiful venue with a common purpose in mind.  The silent auction area was bedazzled with lights, music, conversation and excitement.

Inside the dining room, 250 seats beckoned for company as the tables dazzled in their simplicity.  Black linens topped with red accents and white china glowed in the soft light of votive candles, highlighting the red cyclamen in the center.

Introductions and welcoming ensued before the theme of the evening was revealed.  Addie, one of our overachieving student volunteers, was impacted by the statistic that every 90 minutes an ALS patient is diagnosed and another one dies.  She produced a video simply asking what everyday people might do in 90 minutes.  As a 90 minute hourglass was overturned, Addie challenged the audience, asking what they could do in the next 90 minutes to make a difference in the ALS community.

After a scrumptious dinner topped off by a decadent flourless chocolate tort, Addie returned to the podium.  She addressed the audience by describing her transformation from the year before.  The patient her Extra Hands team was assisting had died this past summer.  The reality of ALS overwhelmed her.  In her grief, she had grown and become even more dedicated and motivated to make a difference.  By sharing her story, everyone in the audience understood what Extra Hands for ALS is all about.

Thereafter, local musician, Jeff King, mesmerized us with the song, “Angels Among Us,” to solidify our purpose in gathering.  Between Addie and Jeff, tears of sadness and joy were commonplace, reflecting the evening’s momentous impact on all who attended.

The live auction changed the reflective mood into one of excitement and anticipation.  Over $15,000 was raised as top notch destinations, LASIK surgery, beautiful fused glass artistry, music composition and a concert were auctioned off.

One of the highlights of the evening for us was to be able to recognize the many volunteers that make Extra Hands for ALS possible.  First, the outstanding student, mentor and family were acknowledged for the profound impact they are having on other people’s lives.  Then, all the students and mentors in attendance stood after their names were called.  As the audience understood just how many volunteers there were, a standing ovation erupted.  We are so incredibly proud of the people that choose to volunteer their time to make a difference in the ALS community.

The evening was topped off by dancing, mingling and picture taking.

Thank you so much to the gala committee that made the evening possible.  We met for weeks on end before the gala to plan, prepare and execute.  It’s difficult to imagine doing this event without the help of such selfless and caring people.

The generous support of many in kind donations that reduced our overall costs is extremely appreciated.  Especially, Signal Graphics, located at 1777 Larimer Street and Gourmet Fine Catering at 2601 Blake Street, Suite 105.  There were many others, but these two went above and beyond anything we could have hoped for.  Please patronize these businesses to help a show our gratitude.

Also, thank you to all the attendees and donors; from the table sponsors to the individuals and last but not least, our incredible volunteers.  Your generosity raised over $81,000 in support of Extra Hands for ALS and ALS TDI, our research partner.

It is never too late to contribute, so please follow this Angels for ALS Gala link to securely donate by credit card if you have not already done so.  Please make any checks payable to:

Extra Hands for ALS

c/o Steven & Jennifer Bishop

8237 Swadley Court

Arvada, CO 80005

We ordered too many Angels for ALS Gala 2007 champagne glasses and are selling them for $10 each.  We have approximately 80 left and they are not raising any money in our basement!  Lindsey, our outstanding student award recipient, designed and makes ALS Bracelets with the Extra Hands for ALS motto, BELIEVE in them. They come in S, M and L selling for $20 each.   Please specify quantities  with your check and provide contact information so we can get either/both or multiple items to you.

One last enormous thank you goes out to everyone who participated in the 2007 Angels for ALS Gala.

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Last night, on the 4th of July, Jennifer and I snuggled up and watched the annual fireworks display that the City of Arvada hosts and the radio station KOOL 105 sets to music.  Just prior, we had a great dinner with friends at our house with their two boys, so Christopher had a play date as well.  The food was great and the company even better.

We arrived somewhat late to the Stenger/Lutz Sports complex where the fireworks take place.  I was worried that we might have trouble getting a parking space, even with disabled plates.  As it turned out, we ended up with very close parking and a perfect view of the celebration directly below the massive booms and lights above us.

Since this is a regular tradition with us, it’s kind of a marker of my progression.  Jennifer and I were laying down with Christopher in a sleeping bag at our feet staring straight up when it hit me we were able to spend another 4th together.  Most of our other holiday plans are somewhat variable in activity, but we have made this an annual event for quite sometime.

After being married for 17 years, Jennifer said she was thinking the same thing about how blessed we were to still be able to watch the fireworks together.  I think it’s almost impossible to dwell in negativity when you see the majesty of a grand display such as this.

We tend to take in all the details.  The younger couples behind us that had been drinking, albeit a bit loud and obnoxious, were simply enjoying the show.  Christopher and his buddies were ever vigilant with the constant question, “Was that the finale?”  The wind was blowing pretty good which actually blew the smoke away from the lights for a crystal clear view of each explosion.  The designs that the fireworks can make now are amazing, from hearts to interlocking rings and stars.  This year added a new one that blew up into scores of bright lights and then propelled themselves like fireflies until the ember extinguished.  That was our favorite of the evening.

I woke up early this morning and let our two dogs, CJ and Tumnus out, and made a cup of coffee.  We planted some trees in the backyard this year and I went out to check on their progress.  They had been in shock after being transplanted and were now showing signs of new life.  For some reason the moon was still out as if watching me take things in.

 

This was a series of events that I haven’t pondered in a while and it is refreshing beyond belief when you take the time.  So on this day, take that extra moment to breathe the fresh air, walk up close to a tree or plant that is showing new growth, smile at a newborn and choose to make a positive difference in someone’s life.

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Weekend to Remember

The first weekend in March brought Jennifer and me to a Christian couples retreat entitled, “Weekend to Remember.”  We had heard about it through our church and others who had previously attended.  Jennifer was the true catalyst in attending and booked it months prior with a general nod of approval as I quickly forgot about it.

As the date approached, I realized that our marriage could definitely use some revitalizing.  Now understand that we have been married for almost 17 years and the last six have been together 24/7.  With me not able to work or drive, I am mostly homebound.  This statement is not for pity by any means as I have an incredible support system that is ready to take me anywhere if I need to go.  It simply means that most married people get a break from one another during the work day, for better or worse.

We basically were coexisting and co-parenting without realizing it.  This may seem difficult to fathom when we are faced with ALS everyday.  However, as I pointed out in the posting dated February 28th, “I’m still here,” we had fallen into the doldrums of life only to be reminded a little more often than most that life is precious.

The timing of the retreat was perfect as I had just finished that article and was ready for a fresh start.  Christopher stayed with our dear friends and his guardian’s for the weekend.  We headed off to Colorado Springs at the Cheyenne Mountain Resort about an hour and a half south of our house.  It is a beautiful resort set at the foot of Pikes Peak.  We were joined by Jennifer’s brother, John and wife, Shelly.  Although, this is a time to work on your own relationship, it was great having their company as well as perspective.

We would spend Friday evening, Saturday and Sunday in a conference setting with incredible speakers, breakout projects, homework and a date night.  Our first night project was spent with some brutal honesty about our relationship and what wasn’t right.  Why did we feel like we were coexisting when we were in love with each other?  We figured the organizers wanted to break you down before they built you back up over Saturday and Sunday!

Each session was biblically based, but non-threatening to the general public.  We found out that there were married, remarried and premarried couples in attendance.  The married couples varied from two weeks to 46 years together.  Some actually had divorce papers sitting at home based on the outcome of this weekend experience.  They told us at the end of the weekend that they were going to throw them away.

The majority of the sessions had to do with how to achieve oneness with your spouse, the way God intended.  Communication, expectations and responsibilities were main concepts of discussion.  There were so many stories that hit home for most that the mood was kept light by these anecdotes.  One of the sessions had the women separate from the men.  That was hilarious and yet so educational.

One of my favorite parts was date night on Saturday.  We were looking in the local directory for restaurants in the area.  We found one with a decent menu and off we went.  It turned out to be a bar with pool tables and loud music…not what we had in mind.  Just around the corner was another restaurant that looked a little more docile.  Walter’s Bistro was the name where we had the first date of our rekindled marriage.

The ambiance was perfect with an upscale feel, comfortable seats and serene lighting.  Two martinis’s, one up and slightly dirty, the other on the rocks with a twist, our usual.  We were going to have an appetizer but looked at the dessert list and found one of our favorites so we held out.  The main course was fantastic but what made the night was the wine.  The last wine on the last page of the wine list was one of Jennifer’s favorite, a 2001 Marques de Riscal.  I ordered it without her noticing, so when the waiter brought it, her eyes lit up.  It turned out to be the last bottle of the 2001 they had.  We finished up with Crème Brule that we had saved room for…yeah, right.

It really did feel like a first date, but we had no camera to commemorate it.  The couple next to us had one and we asked if they would take our picture and email it to us.  True to their word, they had sent it to us on Monday after we had returned. Click here for the picture.

We came back from the weekend rejuvenated with life and the oneness of our marriage.  Thank you to www.familylife.com for their dedication to improving marriages and building the bonds of oneness that allow these relationships to persevere.  I invite you to peruse the website with an open mind and heart.  On a similar note, our dear friend, Randy Ferguson hosts a series for both individuals and couples called Love, Courage and Achievement or LCA for short.  His web site is www.lcaproject.com.

Jennifer and I have been reading quite a bit lately and hope to put up a list of books with short reviews at some point.  We bought several books from the weekend.  This is part of my new adventure and pursuit of purpose in my life.  The books are diverse and contemplative.  They invite introspection.  So many times we don’t know what questions to ask ourselves to make us better spouses, parents and friends.  How many of us want to know?

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There were an incredible amount of supportive and encouraging emails that followed the last posting.  Thank you all so much.  One person in particular brought something to my attention.  She was wondering if there were any other slower progressing patients out there.  Let’s define slower progression, generally, as still mobile and independent approximately three years from diagnoses.  This doesn’t mean you aren’t using any assistive devices, i.e. AFO’s (Ancle Foot Orthosis, aka Ankle Brace), canes, occasional wheelchair for long periods of walking or standing, etc.  Simply put, if you feel your progression is considerably slower than you anticipated, you are who we are looking for.

The purpose of identifying this demographic is that slower progressing ALS patients begin to feel slightly out of place in support groups.  The feeling is that we aren’t relating to the relatively normal progression of ALS very well.  We don’t quite experience the “Always Loosing Something” perspective of the disease.  This is not a reflection on either progression, simply an observation.  Therefore, if we can identify some people in this slower progressing group, we could begin a forum that would be helpful in dealing with some of the feelings outlined in the previous post, “I’m Still Here.”

Soooo, if you fit into this slow ALS demographic (physically, not mentally, ha ha) or know someone who does, will you please reply and let us know if this separate forum is of interest?

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Yes, I’m still here.

It has been a long time since posting to our site.  This has been a particularly hard winter.  Yes, we do live in Colorado, but the meteorologists here say it’s been the coldest in 30 years and we have had snow on the ground for two months.  We’re used to getting a foot dumped on us and it being 57 degrees and sunny the next day when everything melts.  At last, we had a major meltdown the last couple weeks and we can see most of the grass again.  Yet today, it is cold and snowing again.

However, the weather hasn’t been the only tough thing.  We have lost 5 of our patients in the last two months.  Emotionally, it has been a strange time dealing with ALS and my unusual longevity.  Jennifer and I thought and planned on me being dead by now.  Thank the Lord, I am not.  However, I feel a bit like I’m in Purgatory, right now.  Don’t get me wrong, by any means; I feel completely blessed with this slow progression as it has allowed me to enjoy and experience so many things that I thought I was going to miss.

It’s how I imagine outliving your retirement might be.  Now what?  I don’t feel like I’m living up to my potential right now and the motivation factor is running low.  Half of me is in this end of life mode of taking everything in and enjoying all the little things God has set before me; the other half is in the rut most people deal with of day to day life.  It’s the second half of this that is troubling me.  I have this constant reminder (ALS) of how precious life is and yet, because of my slow progression I get caught up in the monotony of life.  I am so used to my own symptoms that my body often compensates to changes before I realize anything has happened.  Then, all it takes is a visit to an ALS patient with a typical progression to bring me back to the reality of the disease.  And they say ALS doesn’t affect the mind.  Ha!  Maybe it’s time to see a counselor.

I still know I am making a difference through Extra Hands and thoroughly enjoy meeting the patients, students and mentors.  These are truly beautiful people and inspirational to me and others they come into contact with.  It is so refreshing to see how selfless and compassionate people can be.  They are really my role models and make me wish I had done a smidgeon of what they are doing during my previous life before ALS.

Overall, I am coping and staying positive as much as possible.  It is just one of those transitional moments when one contemplates the next stage of life.  It is time I take my own advice I have offered on this site:

If you don’t know what your passion is, then make finding it your passion.

I am in the process of reinventing myself and improving my relationships.  How can I be a better husband, father and friend?  What can I do to make my life more meaningful?

Spring will soon be upon us and with it brings new life.  I plan to ride that wave and create a new adventure.  However, I’m not going to wait until then, as it takes some planning and a strong will.  Who will join me?

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Making A Difference

Aside from my last posting summarizing the gala, I realized that not much has been mentioned about Extra Hands for ALS in a while.  We have developed an incredible organization over the past year that now services people across the metro Denver area as well as a satellite group in Steamboat Springs. We have 18 families, 17 mentors and 27 students registered for full or project only services.  Our student volunteers, mentors and families with ALS are making a huge difference in each others lives as well as others that have had the pleasure of their company.  Thank you all so much for what you all are doing for ALS.

I want to give an example of the kind of individuals we have had the honor of getting to know.  In the last posting, I talked about three very extraordinary individuals from Cherry Creek High School (CCHS): Aly, Cynden and Addie.  I’d like to get a little more specific about their involvement with and the affect they have had on Extra Hands and the Bishop family in general.

Jennifer and I had been recruiting student volunteers in various high schools around Denver and speaking with scores of students at a time.  We had the opportunity to introduce Extra Hands to their Distributive Education Club of America (DECA) made up of students in marketing classes. It is an active club that develops business leadership and social activities. Competitive events are held at the local, state, and national levels in salesmanship, advertising, display, and job interviewing. They have over 200 members at CCHS alone and we were very excited to tap into this wonderful network of people.

When we arrived, there were three students and their teacher, Mr. Konrad.  Honestly, we were slightly disappointed in the small turnout, but it goes to show you to be careful with expectations.  We had five families in the immediate area that needed assistance so we were going to give this opportunity all we had.  Ironically, we happened to be talking to three of the most intensely motivated students we have ever met.   Cynden, Addie and Aly were at the end of their junior year and looking for their senior community service project for DECA to add to their existing plans with the Muscular Dystrophy Association (MDA).

Apparently, Jennifer and I struck a cord with them as they immediately told Mr. Konrad that he would be sponsoring their Extra Hands for ALS club!  To try to make a long story shorter, these student’s involvement has become much more than a community service project and more of a symbiotic relationship with us and Extra Hands.

They have spent a significant portion of their senior year raising ALS awareness and funds as well as providing help and hope to those dealing with ALS.  Sound familiar?  Check out our life mission list on the home page of www.alsliving.com.  They have demonstrated a tremendous team effort with resounding results.

Aside from their contributions with the Angels for ALS Gala, they developed an end of the year blitz, called Give It Up For ALS, where over $4,000 has been raised during the holiday season by members of their DECA club.  Addie, Aly and Cynden didn’t tell us about this campaign, instead wanting to surprise us with the results.  I was brought to tears as we were told about all the effort that went into it and all the people they brought ALS awareness to.  There were scores of donations from people who likely knew nothing about this disease prior to their campaign.

One of the main reasons for posting this article is to encourage them as they start the process of the DECA competitions with an extensive essay and speech regarding Extra Hands for ALS and MDA.  They continue working as a team with the very difficult task of putting the passion into words that has transformed this community service project into a life changing event for all of us, and hopefully, an award winning combination of prose and dialogue for DECA.  All this is being done during their winter break.

Jennifer was much more involved in high school than I was, but even she admits that the thought of what these students are accomplishing was beyond her contemplation at the time.  The dedication and thoughtfulness with which they have approached the Bishop family and Extra Hands for ALS is beyond words and we would like to simply say thank you for all that they have done and continue to do for ALS.

As for the deeper meaning of all this to the readers of this posting; remember that you never know how much you can impact the people with whom you come into contact.  With that in mind, try to make sure those contacts are positive in nature even if it doesn’t seem to make a difference.  Two of our favorite movies with powerful messages are Pay It Forward starring Haley Joel Osment, Kevin Spacey and Helen Hunt as well as Mr. Holland’s Opus starring Richard Dryfus.  Rent them sometime when you think you can’t make a difference in this world.  If you’ve seen one or both of them, you know what I mean.

Happy New Year to all!

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