A New Normal

Throughout Connor's life whenever his condition worsened and he lost the ability to do something he used to be able to do, or we had to adjust to another piece of equipment he had become dependent on, we used to say we just needed to adjust to our new normal. Instead of focusing on the loss and limitations we would focus on finding new ways of doing things and enjoying what he could do. I still try and have that attitude. Problem is, I really don't like my new normal. I'm now fairly well rested, in much better shape, can make plans on the spur of the moment and have time to sit and write this blog...all unthinkable 16 months ago...but I would trade it all in a second. I would happily be tired and overweight if I could go back to my old normal. I guess sometimes adjusting to hard things is easier than having them taken away.

Keep Your Word

I know it sounds like very obvious advice but here it is anyway. Keep your word. Especially when you have specifically told a group of people not to worry about something because you are going to take care of it. And if for some reason you are not able to do what you said you would do, please just admit it. When it comes up again don't pretend like it is a new issue and you never previously said you would take care of it.

Real life example: Several weeks ago one of my co-workers specifically asked to have an item added to our staff meeting agenda so they could get input from the team about a special event that was being planned. We did not get to that agenda item, because the person who asked to have it put on the agenda double booked themselves and needed to leave the meeting early. As they left they said 'don't worry about that item, I will follow-up with everyone individually'. Great, problem solved, right? No, wrong, because they never followed-up. This morning they contacted me and asked to call a special staff meeting (during new years week) because they need to get input from the team about a special event, which is happening in 6 days. No mention of the fact that they had committed to deal with this two weeks ago...Very annoying...

For these Tough Times

I finished (and started) my second book for the Thomas Nelson BRB project yesterday. For these Tough Times by Max Lucado. I am not a fast reader so the fact that I started and finished it in one afternoon tells you that it is a very accessible book. I was drawn to the title because of my personal journey over these past several years and while Lucado certainly does not dive into the depths and complexities of dealing with grief and loss he does provide the reader with some good reminders about who God is, the fact that we are not Him (and thus lack His understanding), the fact that He does love us, and the fact that He is accessible to us. In addition to being drawn to the title because of my own personal journey, I also wanted to evaluate it for its appropriateness to give to other parents and families that are dealing with tremendous loss. Because Lucado presupposes the reader already has a belief in God and at least a basic understanding of the Biblical narrative, the book falls a little short in its general applicability. While there is something to be said for writing to your audience, Lucado has defined his audience so narrowly that it really cannot be used as a resource to introduce the love and care of God to people dealing with great loss and suffering that don't already know Him.

The Appropriate Use of Words

I feel obliged to say right up front that in general I am not a fan of swearing. Unlike some people, It doesn't particularly offend me when others swear, I just typically find swearing to be a cop out for not learning and using more descriptive and appropriate language. Also I find swear words usually have the effect of cheapening the message that the speaker is trying to deliver. That being said I do believe swears, just like all other words, when used appropriately, can be very effective at expressing a specific thought or feeling that no other word can express. Some examples from my own life (as this is a family friendly blog I have masked the actual words but you will get the point. I will ask your forgiveness in advance if I have offended you):
  • Having a child with a life-shortening illness really S**KS.
  • Spending weeks on end living in a hospital with your child feels like it must be H**L.
  • After your child dies (and I'm sure its the same for your spouse, parent, etc..) there are some days when you really feel like S**T.

Not Created Here syndrome

Although I am not a doctor I think I have discovered a new syndrome (A syndrome is a collection of signs and symptoms known to frequently appear together but without a known cause). In the medical world the person who discovers a syndrome or disease usually gets to name it so I have decided to name this new syndrome 'Not Created Here' syndrome. If you encounter someone with this syndrome you will need to be very careful as it has been known to immobilize what could otherwise be a highly functioning team, from making progress on any sort of meaningful project or initiative. Some of the symptoms you need to watch out for are:
  1. The compulsive need to restate another person's idea in different words and then act like they came up with it themselves.
  2. Nitpicking some specific detail of an idea, and thus dismissing the entire thing, before understanding the big picture concept.
  3. Dismissing someone's idea or point of view because they do not have the 'appropriate' experience or qualifications.
  4. Acting completely disinterested in meetings if the conversation does not revolve around them or their ideas.
  5. Ignoring suggestions and feedback because the person giving them does not have the 'authority' to do so.
  6. Agreeing in private and then acting like the idea is ridiculous in front of superiors.
  7. Expecting others to keep them informed about everything and only sharing details about what they are doing when they need something from someone.
  8. Being nice to people only when they need something from them.

A Different Voice

It is amazing to me how sometimes two people can say the same exact thing to the same exact person and person one is responded to like they are an idiot and person two like they are the smartest person in the world.

A suggestion for those of you who respond more based on who is speaking rather than on what is being said. STOP IT!

If you are lucky, the people you do this to only find you really annoying. More than likely they find you very hurtful and really think far worse of you. If you have some predisposition against a certain person try closing your eyes and pretend someone else is talking, would it make a difference to how you respond?

In Loving Memory of:


Tonight we remember the children we know who were taken from us too soon and we say a prayer for all of their families who love and miss them.

Connor
Kyle
Evan
Zach
Sam
Aubrey
Ryan
Tommy
Tyler
Grace
Danny
Josh
Danny S.
Wesley
Joel
Maxine
Mattie
Nathan
Victoria
Sara
Kevin
Christian
Landon
Izzy
Charis

Who moved?

Last night we got to spend an evening with 150 of our 'older' friends at an annual holiday dinner that our church hosts for seniors that live in some of the local senior apartment complexes and assisted living centers. It was a great night and a good time was had by all.

Deb and I are lucky enough to get to spend one Sunday afternoon a month with several of these great people at a Bible study we lead at one of the complexes. To tell you the truth we probably get more out of it than they do. I love hanging out with 'older' people mostly because they are just fun. However, their years of experience also seem to give most of them a simplistic wisdom that refocuses me on what is important in life. And since we usually get to hear most of the stories multiple times their lessons usually eventually sink in. One of the things I have learned from my friend Lillian (pictured above) is this. When you feel like God is far away, ask yourself this: Who moved?

Too Big To Fail

It appears that the new formula for long term success (if you define success as staying in business vs. going out of business) is just to grow so big that you are 'Too Big To Fail'. We first heard about this concept in relation to big financial institutions and now it is being applied to the US automotive industry.

While I am very sympathetic to the many individuals that would be hurt by the failures of these companies, and the failure of them would certainly be extremely painful in the short term, saving them will potentially have even more damaging long term effects that no one is talking about. By saving these companies we are building a system that has no consequences. There is no reason to strive for excellence or invest in innovation if you can get by being mediocre; and there is no reason to be wise and responsible if there is no consequence for making very risky loosing bets. The only requirement for success is to grow big enough that you are too big to fail.

And now, too big is becoming relative. It is not just the biggest banks and biggest car companies that are using this rationale, I have recently seen this mentality begin to permeate the local non profit sector. A local non-profit I am aware of is in the process of dealing with a very difficult situation that could feasibly impact the agencies ability to continue. Most of the ideas being raised for addressing their problem are very positive but, one of the options that has actually been suggested is to simply do nothing. Why would they do nothing? Because as the argument goes, the agency provides too many critical services to be allowed to fail, so someone will bail them out. They are not by any means a huge non-profit by national standards but they are the one of the biggest fishes in their small pond.

If this trend continues what are we teaching our next generation of leaders?

Our Greatest Fear

Why aren't you chasing your dreams? What are you afraid of? Failing? I think not. I think you are more afraid of success than failure. Why? Because people who succeed stand out. People who fail fit in and deep down that is what we all want, to fit in.

You are saying NO! that is backwards. We all want to stand out, be different and change the world.

Really? Think about it, from our earliest days, our society breads mediocrity. Remember back in grade school, the smart kids were the ones who were always made fun of. They were the geeks and the nerds.

Did you ever pretend that math or science were not easy for you, or not tell anyone that you really enjoyed reading the Scarlett Letter? Did you ever hide the fact that you were the one who got the 100 on the test and ruined the curve for everyone else?

Well stop. We need you to lead. We need you to be amazing. We need you to change the world.

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light , not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented and fabulous?

Actually, who are you not to be?

You are a child of God. Your playing small doesn't serve the world. There's nothing enlightened about shrinking so that other people won't feel insecure around you.

We were born to make and manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."

- Marianne Williamson, from A Return to Love

The Truth About You

As previously discussed in this space I am reviewing books as part of the Thomas Nelson Book Review Blogger project. Here is my review of The Truth About You by Marcus Buckingham. Enjoy!

The Truth About You is really more than a book. It would be better described as a learning experience. If I had only two words to describe this experience they would be: Simple and Profound. As is true with most ideas that contain the potential to transform your life, the concepts presented are deceivingly simple, but if successfully implemented could have a profound impact on your life and work.

If you are new to the work of Marcus Buckingham, reading The Truth About You will provide a good introduction, and will likely lead you to seek out more about his work. The combination of the introductory DVD, book and ‘rememo’ activities should cause you to rethink your long-held beliefs about personal strengths, weaknesses and how you can maximize your performance, productivity and enjoyment of work. Sound like an impossible dream? It may be, but Buckingham, in his oversimplified way, sells it convincingly.

Unfortunately, for seasoned Buckingham followers there is really nothing new here. It is basically a very simplified repackaging of the key points and activities from Go Put Your Strengths to Work and Trombone Player Wanted. Save yourself a few bucks by finding the old copies, dusting them off, and having another go at it.

Worldwide Candle Lighting

Next Sunday, December 14th is the Compassionate Friends Worldwide Candle Lighting Ceremony,which is held the 2nd Sunday of December every year as a remembrance of children who have passed away. Candles are lit and burned for one hour starting at 7 pm (local time) worldwide.

You can go to an actual service as listed on the site or hold a personal one at your own home. This year Deb and I will have our second annual personal service for Connor and his many friends who have passed away.

Please light a candle and say a prayer for Connor and his friends, and our families on December 14th at 7 pm. Thank you for remembering us!

Please also support children and families dealing with complex health care needs this holiday season through www.connorshouse.org!

In the paper

While most people I know who serve in the non-profit/religious worlds do not do it for the publicity (in fact most of them shy away from any type of accolades) it is still always nice when what you are doing to support others gets noticed and recognized. One of the greatest benefits of this is that it helps spread the word about what you are doing and hopefully connects more people who need the type of the support you are providing with your organization.

Today our local paper ran an article about a support group my mother-in-law started six years ago to support mothers of children with special needs. I'm proud of all the work she has done and the families she is helping. (The only bad part is that unfortunately you don't get to see the beautiful picture of my wife in the online version).

http://www.dailyrecord.com/apps/pbcs.dll/article?AID=2008812030311

If you could change your life

Seth Godin today posed the question; If you could change your life...would you? Seth postulates that there are people out there who he is convinced that given the right teaching, encouragement and opportunity can change the world. And in order to put his theory to the test he is creating a 6 month apprenticeship program that he dubs an Alternative-MBA. He has made the turn around time from announcement to program commencement ridiculously quick (approx 6 weeks) and if he cannot find a small group of amazing people to take on he will cancel the program.

You can read more about it by following the links above but suffice it to say that while it is crazy and audacious, it is one of the most fantastic and intriguing ideas I have heard about in a long time.

Are you bold enough? Do you believe in yourself and your dreams enough to try?

Quotes

I think God can speak to us in many ways. One of the ways I believe he speaks is through the concise ideas of others that can be easily understood and shared, typically called quotes. The best of these ideas move us to action, even if only the action we undertake is self-reflection which is perhaps the most powerful action of all. Today I will share a few quotes with you that have been causing me to reflect recently.

"In order to reach people that no one is reaching you need to do things that no one is doing. If you are going to do things that no one is doing you must stop doing what everyone else is doing." -Craig Groeschel

"Leadership that matters to God is leadership in priorities and activities that matter to God." -Gary Haugen

"When life gives you lemons...make grape juice then sit back and let everyone wonder how you did it." -anonymous

"With God 3% can be a majority" -Gary Haugen

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, It's the only thing that ever has." -Margaret Mead

Don't confuse motion with progress.

I had lunch with a friend the other day and we were sharing with each other the new endeavors we were working on. After describing his project, the different ideas he was thinking through and the next step he was planning on taking he made this self reflective comment: I try to never confuse motion with progress so I want to be sure my next step will be one that will move me forward.

This is great advice. How often we get busy responding to the onslaught of requests we receive and consumed by the tyranny of the urgent only to realize at the end of the day we have accomplished very little other than moving a lot of paper around (or in today's world answering a lot of emails, text messages, etc...). We should take a hard look at our to-do lists to make sure our next step is going to move our cause forward and not just make us look busy.

I'm a book reviewer!

Who would have ever thought I would be a book reviewer (I assure you none of my English teachers).

About a month ago Thomas Nelson launched a campaign to enlist 10,000 book review bloggers and yours truly signed up. It is a really fascinating program that intrigues me on many levels including marketing, community building, leadership, media and new business models. You can learn more about the book review blogger project here.

As I read the books I select to review I will be blessing (or cursing) you with at least 200 words of my thoughts right here at On My Way Home. My very first review of the Marcus Buckingham book 'The Truth About You' in the next couple of days.

Thankful or Grateful

Grateful Thanksgiving to you. Today I will share with you the words of someone else who I am extremely thankful and grateful for. You can visit Deb Millard's blogs at www.caringbridge.com/visit/connorscott99 or connorscott99.blogspot.com.

"We wish each of our friends and family a, well that's tough...a "happy" Thanksgiving? The adjective to pick is the difficulty. So many families we know are struggling right now with severe illness. Some are presently in the hospital today trying to cope . Two years ago that is exactly where we were. In the PICU with Connor on Thanksgiving Day. Last year was our first Thanksgiving without him. This year is our Second...

One family we love has to cope with the one year anniversary of their son's death TODAY. Yes, on Thanksgiving. Imagine...

Many families are missing their children today. Holidays are extremely difficult for so many. Much of the time the word "happy" just doesn't fit. I think those of us who have children in heaven become extremely thankful for what we did have, and are so amazingly grateful for the hope we have of seeing our kids again.

Those of us who are dealing with serious illness right now? We live one day at a time... Sometimes we just have to live one moment to the next. Things are just too precarious. We are so incredidly thankful that our children are here with us. We have a gratefulness that most other families can't imagine.

Thanksgiving for families of children with these types of needs, well it has a totally different meaning. I wouldn't necessarily use the term "happy". I guess I'd use the term "grateful".

So I guess we wish you a "Grateful Thanksgiving!" We hope you remember those good times with a thankful heart, and embrace those moments you have now with gratefulness. We pray you can look toward the future with hopefulness through the pain. We pray God's grace on each one of you.

Thanksgiving was not one of Connor's favorite holidays. He could not eat the food. But, he did love coming up with all the things he was thankful for. He would always say God... Mama, Papa, Caseygirl. His Grandparents... His Cousins and his Friends. Of course the BUCKEYES! He even said Mr. Sun!

Us? We are so incredibly thankful to God for giving us an amazing 8 1/2 years with this spunky, beautiful little boy who completely changed our lives! We are forever different and totally blessed! What are you thankful for today?"

Give the Gift of Hope

Instead of fretting over what to get for that 'person who has everything' on your list, this holiday season give the gift of hope by making a donation to Connor's House in their honor.

For a suggested donation of $25 (of course you can donate as much as you want) Connor's House will send a personalized holiday card recognizing your gift. Information about how to participate can be found on the Connor's House home page under the title "Give the Gift of Hope this Holiday Season". We'd be thrilled if you joined us in supporting children with complex health care needs this Holiday Season!

Connor's House Mission

The mission of Connor's House is to support children with complex health care needs, together with their families, by creating a community of support helping them to embrace each day and live life to its fullest.

Learn more about what Connor's House will be doing and to become part of the Connor's House community! Visit us at www.connorshouse.org

Honest Feedback

I really like to get positive feedback about my work. But more important than getting positive feedback is getting honest feedback. We are all prone to falling in love with our own creations and losing our ability to evaluate them objectively.

Those individuals in your circles willing to give you honest feedback in an encouraging and constructive manner are priceless.
Thanks to all of you who are doing that for us as we continue to develop the Connor’s House model.

The election. What have you learned?

The election is over and what I find more interesting than the outcome is what we can learn from the process. I think Barack Obama won (congratulations) because he changed the rules of the game:
  1. The first thing he asked for was not money, it was involvement. He asked people to join a movement and once they were part of the movement their money followed.
  2. He made people believe that they could make a difference. His campaign was more about ‘we’ than ‘I’.
  3. He lowered the bar of entry into the political process. He asked for small amounts of money (but did not turn away large donations) and the majority of his events were open to the general public vs. an invite only list (i.e. Grant Park vs. The Arizona Biltmore).
  4. He focused on hope and not fear.
  5. He adapted better to a fast changing environment.
Are you willing to change the rules in the world you work in or serve in? How can you apply these lessons to your current situation or that new idea you are working on?

Fall in love with your mission

To be successful over the long haul you need to fall in love with your mission and not your programs. A program is nothing more than a means to achieve your mission. A program that is effective today may not be effective tomorrow. To often we fall in love with what we have created and will not change it even when it has become ineffective at achieving the mission. The point at which we refuse to recognize and accept that our programs are no longer achieving their goals and take on the hard work of change is when the organization begins to become irrelevant to its target market.

How will you reach them?

If you want your organization to not just succeed, but to thrive, in the non-profit world your organization needs to be unique. In some way, shape, or form the mission of all non-profits is to affect change (hopefully positive) in a persons life. If your organization is going to be successful at affecting change in situations where no one else has been able to do it, you will need to do things no other organization is doing.

At Connor’s House we will provide a constant source of support for the family from their child’s diagnosis (or onset of a complex health condition) throughout their life no matter how the child’s symptoms, condition, or situation changes. No one else is doing that.

How will you reach your target market?

Is bigger really better?

Conventional wisdom tells us that when facing a really big task or project we need to recruit a big team in order to tackle it effectively. However, I have read two different things over the past two days (Deuteronomy Chapter 20 and Seth Godin’s book Tribes) that suggest that what is more important than the size of your team is the commitment and focus of your team. A small group of committed and focused people is going to accomplish far more than a large group who are just showing up for a pay check, out of obligation, or for any other reason other than because they are committed to your purpose.

Why Not?

Have you ever noticed how often people ask ‘Why’ questions?

‘Why’ questions are usually asked under the guise of research, or information gathering, but I think often times there is some sort of underlying judgment being made by the questioner. They may be asking ‘Why did you do that’ but what they are really saying is ‘I wouldn’t have done it that way’.

If you want to encourage people to grow and help them succeed, instead of asking ‘Why’ start asking Why not?…Why can’t we?…What if we try it this way?

You would be amazed at what you can accomplish if you are willing to question the status quo. Sometimes you might struggle or fail, we certainly have (and I’m sure we will again), but don’t be afraid to try.

In our journey with Connor we were forced to break a lot of new ground and sometimes we felt like working with the medical, governmental, and social service communities to get the support we needed to take care of our son ourselves, at home, in as natural a setting as possible, was like trying to roll a large rock up a steep hill. How different it would have been if instead of asking ‘Why’ more of the professionals we worked with said ‘Why Not’…’You can do it’…’What if we tried it this way’… ‘What can we do to help you’.

Those are the questions we will ask at Connor’s House.

On My Way Home

How do you feel when you are on your way home?

Do you anticipate it with excitement or perhaps sometimes with dread? Is it a quick trip around the corner or a long commute in lots of traffic? Do you call before you leave so your arrival is anticipated or do you just show up and try and sneak in?

I am on my way to a new home. Consider this my call to tell you I am on my way. After all, the anticipation is often the best part. It will likely be a long trip on unfamiliar roads. There will be some easy wide open stretches when the miles seem to fly by and some steep hills to climb that will feel like they will never end. While it may take awhile to get there I expect to learn a lot along the way, which I will make a feeble attempt at sharing with you here.

Long trips are always more fun with friends so I invite you to join me. Climb aboard, fasten your seat, keep your arms and legs inside the car at all times. Next Stop…Connor’s House