Get up from your desk

In the midst of our tour of UK hospices we had a little bit of down time in London this past weekend. While wandering around the city on a beautiful Saturday afternoon we came across an art gallery displaying photos taken as part of the Shoot Nations Growing Up in the 21st Century contest. The caption on one of the pictures really struck me.

'A desk is a dangerous place from which to view the world.' A girl daydreams outside the limitations of school.

Research and study are important, phone calls are helpful, but the world you learn about from behind your desk is at best two dimensional. We have learned so much over the past two weeks on our tour that we never would have otherwise understood about the children's hospice model in the UK.

Reading about models and methods for providing children’s hospice and palliative care services online was important but it did not begin to teach us everything we need to know. You cannot capture the laugh of a child as their care worker blows bubbles in his face through a picture. You cannot appreciate the feeling you get when you walk into a bereavement suite through a set of floor plans. You cannot replicate the conversation around a dinner table between parents, children and care staff over a conference call. These types of things can only be learned and experienced in person.

Is there something you want to know more about in this world? If so, put the book down, shut down your computer and go out and learn about it in person. You won't be sorry.

Grieving the past in order to create the future

I do not tend to be an overly emotional person. But, I have been dealing with an interesting little piece of grief so far during our UK tour that I did not expect. I expected to be inspired, energized and further motivated to push the development of Connor's House forward, which I certainly have been, but I have also found a new grief here which I did not at all expect.

After completing four of twelve planned house tours and participating in a remembrance service, I find myself grieving the fact that we never had the opportunity to benefit from the types of services and supports that the children's hospices here provide (and that we hope to provide). I find myself grieving the fact that Connor never had the opportunity to go to a place where they truly accepted him the way these places accept and love the children they serve. The passion and dedication the people here have about the work they do is inspiring.

Reading about these places and talking about our goals for Connor's House theoretically was one thing. Seeing it in action is something totally different, which has created a totally different response than I had anticipated. That is the funny thing about grief. It often strikes when you least expect it. And often it strikes when you expect to feel the exact opposite and I think those are the hardest times.

The caterpillar dies so the butterfly could be born.
And, yet, the caterpillar lives in the butterfly and
they are but one. So, when I die, it will be that I
have been transformed from the caterpillar of earth to
the butterfly of the universe.
-- John Harricharan

Connor's House Holiday Cards

We are excited to announce the availability of Connor's House Holiday Cards. Each card contains custom holiday artwork created by children with complex health care needs or life shortening conditions. Order yours today and help spread the Connor's House message to everyone on your holiday card list this year. Click on the banner above to place your order.

Face to Face

Connor's House is going on the road! Tuesday morning Deb and I will be leaving for the UK as part of British Airways Face to Face program. The Face to Face program asked companies to submit essays describing why a face to face meeting, anywhere British Airways flies, would help grow their business.

The model that Connor's House is largely based on originated in Oxford England in 1982 at a place called Helen House. Today there are 42 children's hospice houses across the UK (compare that to 1 in the US).

We submitted an essay, to Face to Face, for Connor's House discussing how the opportunity to visit the children's hospice houses in the UK would provide us with an invaluable opportunity to learn first hand from the pioneers in the field of children's hospice and palliative care services. And surprise surprise, British Airways agreed with us. They selected Connor's House as one the winners and are giving us two round trip tickets to the UK.

Over the next two and a half weeks we will travel across the UK from London to Scotland and back spending time with 10 different children's charities that between them operate 14 children's hospice houses. We will also be meeting with officials from the National Health Service (NHS) to learn about the services offered through the UK health system to children with complex health care needs.

This is an amazing opportunity for us and we can't wait to see what we learn and how it will enhance our thinking and improve our plans for Connor's House. We will be sharing what we learn as we go so stay tuned...

Something had to give

So it has been two weeks since my last blog post. The longest I have gone between posts since I started this little site just about 10 months ago. I really try to update the blog at least three times a week (and if you follow me with any consistency you already know that I am not and this represents merely an ideal not a reality). There is really nothing special about that frequency, just sort of my own goal to keep things current and help me process through the things that are going on around me.

Unfortunately over the past two weeks I have found myself in the perfect storm. My day job at the church has been crazy as we are in the middle of kicking off our new fall schedule, adjusting to two staff departures and launching a new outreach initiative to combat hunger in our community. Connor's House has been equally crazy. We held our fifth blood drive today (thanks as always to all the donors and our partner the Blood Center of NJ) and are simultaneously prepping to launch a new funding campaign and holiday card fundraiser, embark on a tour of UK Children's Hospice Houses and review preliminary pre-qualifications for architects for the house (more on the first three later this week).

I'm not complaining or asking for sympathy, just explaining the gap in posting and I suppose doing a little self justification at the same time. Unfortunately something had to give and the blog was it. Actually it was just one of the things that was put on the back burner but I won't bore you with details about missed workouts, my lawn that needs to be mowed, etc...

I also won't promise that this will be the last long unplanned layoff from the blog (the best boss I ever worked for taught me never to speak in absolutes) but please stay tuned because there's going to be a lot of exciting stuff going on over the next couple of weeks at Connor's House, plus the new hunger initiative I am working on has me pretty excited, and I wouldn't want you to miss any of it ;)