Reference to an older post

I received a note on an old post that really touched and humbled me last night.

For the record, I will say that if I had chronic Lyme disease, that I WOULD DEFINITELY follow a long term regimen of antibiotics to aggressively kill of the several forms of the disease. I do believe, though probably hundreds of hours of research, that chronic Lyme disease is a much bigger problem then the medical establishment will recognize and that many more people are suffering from it than anyone realizes. I also happen to believe that there is a connection between Lyme and things like ALS and MS and that it can be communicated via tainted blood. But then again, I'm not an MD, only someone who has been drastically and painfully forced to learn about these issues.

The biggest problem I have with Mindy is that she completely dropped us the very second that we questioned whether her treatments were helping and suggested potential other things that we had heard about. She never called back and she cancelled Heidi's prescriptions at the pharmacy she is literally directly connected to, even her anti-depressants (which is extremely dangerous, especially given that she had been involved directly and acutely aware of Heidi's extreme depression and suicidal tendencies that flashed up from time to time.) Completely inexcusable and irresponsible. To date, she has never addressed my blog, except maybe for in an anonymous post that was very suspicious to me being "pro Mindy" and chastising me for "taking people's hope away" by not recommending her.

OK. End rant, but please do review Kris' note at the bottom of the comments section here. I hope that spouses and family of those affected by these degenerative disorders do step up and to whatever they can for their loved ones.

http://alschronicle.blogspot.com/2009/02/readers-comment-and-my-response.html

Peace to you during these holidays. And Health...that would be my wish for all of you.
B

Musings on Thanksgiving

I peel myself off the white shower pan
wondering how much of the water that went down the drain is diluted by the salt from my eyes.

I shave the gray from my face and marvel at the color of my eyes in the mirror...red from beer and pain.

I look at shoulders, ripped from carrying, like my heart.

Thankful for this life

Thankful for the times I have had with my beautiful wife.

Thankful for freinds

Thankful for family

Thankful for new love and the promise of a future unwritten that mends.

Thankful for people that bring a voice to a disease with no survivors

Wondering when I will be able to speak of it again.

Wondering when the darkness of the day will lift and the stars of the night will shine again.

Yes, Thankful for this life

Sometimes ready to live it, sometimes wanting to fall back down on the shower pan and let the water flow until the tanks have gone cold.

Happy Thanksgiving everyone, be there for those you love.

B.

More amazing art...

This from my friend Kassi, who's mom died of ALS and who's sister died in a tragic car accident a few years later, in 2005. She wrote this on her sister's memorial page, I share it with her permission.

I have amazing friends...what else can I say?

=======
You can shed tears that she is gone,
or you can smile because she has lived.

You can close your eyes and pray that she'll come back,
or you can open your eyes and see all she's left.

Your heart can be empty because you can't see her,
or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday,
or you can be happy for tomorrow because of yesterday.

You can remember her only that she is gone,
or you can cherish her memory and let it live on.

You can cry and close your mind, be empty and turn your back.
Or you can do what she'd want:

smile, open your eyes, love and go on.

-Kassi Kosydar Figueroa

Good stuff!

A friend sent this to my mom. If we all saluted the dawn like this and lived by this "motto" the world would be a much better place.

Great stuff...

Salutation To The Dawn

Look to this day!
For it is life, the very life of life.
In its brief course
Lie all the verities and realities of your existence:
The bliss of growth,
The glory of action,
The splendor of achievement,
For yesterday is but a dream
And tomorrow is just a vision,
And today well lived makes every yesterday a dream of happiness
And every tomorrow a vision of hope.
Look well, therefore to this day!
Such is the salutation to the dawn.
--Kalidasa

My message for the day...

Let go of your anger or it will consume you. I have been to the dark places and I don't ever want to go there again.

If you are there, let go or be consumed...it is your choice but I will not join you.

The time is now. This life waits for no one.

Love,
B.

Through it all

Through it all

Through the darkness that rolls off the mountains and bears down on my heart like a vise.
Through the opaque fog so thick that blinking eyes see only shades of gray.
Through the pain that pierces my heart and fills my eyes; white hot, lingering, then gone.
Through the throbbing ache of a thousand days of wasting muscle and fading dreams

A light shines.

It is you.

------------------
Thank you.
I love you.
=============
Bill

The Letting Go...

Sorry I have been dark for a while...dealing with my feelings and just FEELING my last days in Hawaii pulled me away from sharing with all of you. The last three weeks of my life have been some of the most amazing days of it so far. If you know me, you know that there have been a disproportionate amount of amazing times, so I guarantee you that that is saying something.

Saturday the 24th of October, 2009 was a day that will live in my heart forever. It was 16 years to the day that Heidi and I were married and spoke our vows in front of family and friends. I did not spend much time planning for it, but it came together perfectly, which I sort of now have come to expect with regard to these things. Heidi and I, we ran the spectrum... for poorer or richer, in sickness and in health. These things always mean something to those that speak them but we have lived them to extremes that I hope no-one ever should. Or maybe the extremes were a blessing to us too. I don't know.

There have been SO many things that have helped me through this, some emotional, some physical and some just examples of pure love flowing our direction.

The latter of those things is immeasurable..so many people have sent sentiments and wishes, good vibes and prayers, that I can never repay them (you). People have contributed money and time to our trip and to fixing up our home so that I did not have to deal with it. Again, I can not thank you enough. I felt an enormous drive to share with you the experience we had in letting Heidi go. When we returned from the boat ride to release her ashes, I NEEDED to post the pictures and share the story as much as I could on that day, because you WERE included in the events, your spirits and well wishes were there and the positive energy that was directed toward us manifested itself in the moments that passed on that boat. I don't know how to describe it any better or differently than that.

That day was huge for me. It was the end of a long journey. I had decided it was the last day I would wear our wedding ring. It was a harder day for me than the day of the funeral when I spoke for a long time to hundreds of people. All I said before I let her ashes go in to that beautiful azure water were these words, but I could barely get them out.

"Girls, this is where your mommy and I met. This is where we fell in love and this is where she wanted to be let go. She will always be here for you, whenever you want her. She loves you very much."

We recited the Lords prayer and had a moment of silence on the water. With that, I passed her ashes to each of them and let them, if they wanted to, hug those remains. I took them, kissed them, said goodbye, opened the bag and began to pour. The plume opened up in front of us in a beautiful cascade of sunlight and contrast. The cloud made shapes and sunk in various speeds that made the patterns look almost surreal. The lightest dust floated on the surface with the flower pedals that that the girls, family and friends threw out. It was awesome.

As we slowly circled the ever expanding flower pedals, a large sea bird flew over and inspected our little flotilla. She looked at us and the flowers and made a slow circle herself. We could all feel Heidi's presence as we seemed to feel the the "OK" sign and a feeling of serenity passed over me in a way that is difficult to describe. The beauty of those moments will live in my heart forever.

Many of you have sheltered me from as much pain as you could possibly have. There is pain that no-one can take away. Pain that I, we, have to go through regardless of anything else, but that pain is productive towards a new life and I feel it every day, knowing a new life is already here in some ways. I hope you will too.

Thank you and good night.
Peace.
B.

PS, I continue to read the stories of my friends and connections dealing with ALS and my heart continues to go out to you. Be strong. I love you guys and so much know how you feel. There is some light there for you even if you can't see it today. I promise.

Deleted post...

As I suspected, I deleted my angry post.
If you saw it, I hope I didn't offend you.
If you didn't, I'm glad.
A momentary lapse of reason in a time of pain.
I apologize.
B.

Update on the Hawaii blog

Hi all, there are a few updates on the Hawaii blog along with some photos from our trip.
Since a lot more people follow this one than that, I thought I'd let you know!
http://sedgtrip.blogspot.com/
Aloha!
Bill

Hawaii Trip....

Hi Everybody,
As you probably know, my blogging life started when we took a family trip to Hawaii January - March of 07. It was incredible.
Heidi's wishes were to be set free here on Oahu, and so we have returned here to our beach house with her remains and will be doing that next weekend. I am going to re-visit the Hawaii blog this week rather than posting here.
If you would like to follow this little journey, then I welcome you to click on this link.
See you over there!
http://sedgtrip.blogspot.com


Peace,
B.

Another amazing story...and a "Beautiful Life" in song

So, things keep happening that are awesome and amazing and special to us. About a week ago or so, my brother in law John posted a link to a song from a singer/songwriter that went to our school in Germany back in the 80's. I know that John has good taste in music and the song was called "Beautiful Life" which also struck me as relevant, so I clicked on the link.

As I watched the video for the song, I began to feel some pretty raw emotions coming through. I could feel the heart of the artist in her voice, I could hear the sincerity in her performance and I could immediately relate to the lyrics. The outpouring of emotion that I had was perfect for the time. This was only about a week or so after Heidi had passed and I was struggling a bit.

I re-posted and shared the link to her video on Facebook and figured that was the end of it. Well, since then, Jennifer Appelquist has reached out to me to tell me the story of her song. It is a great story and so touching to me. I figure that it will also be to some of you, so wanted to share it again here, along with her story so you can relate to it now the way I do.

Here is her note to me from earlier today.

=======begin Jennifer's Note======snip=====

So..beautiful life..the song..I felt I had to share because your experience is so close to the essence of why I wrote it..here it goes..

I have played music with a friend by name of Aaron, for over 10 years who lost his mother to cancer at 15. I never met her but even so she has touched my life in many ways. Aaron's father gave me a silk shawl as a Christmas present few years back that belonged to Tamara (Aaron's mom). It was a beautiful gift and one evening I was at home alone sitting at the piano lights off candles lit, and I threw on the shawl just because...

What proceeded to happen was one of the most amazing experiences I've ever had songwriting. I literally felt like a vessel for her story. I thought about them and their love for each other as husband and wife, I thought about them dancing and laughing at a much more innocent time in their life..I thought of the pain involved in losing each other but the celebration of their love and beautiful life together.

I almost don't even feel like I wrote the song, it came with such ease and perfection both lyrically and musically, .. I feel like she spoke her story through me and I am so grateful for it.

She had this amazing red hair and lines like "he looked for her in everything pure and when shades of red filled the sky, he thinks that's her way of saying hey babe, I miss you up here tonight" just flowed..as did "she left this world like a butterfly girl in search of colors divine."

Anyway, I am not sure why I felt like sharing the back story, as I don't know you personally or your story except through your beautiful blog and the lovely John T, but perhaps this is part divine intervention and perhaps her way of saying "hey babe" to you :-)

It is a bittersweet song and I am honored that it has touched you. Listen to it as often as you like.

=====snip====end Jennifer's note to me========

I asked for and received her permission to post her note and a link to the song. I hope you will enjoy it as much as I do. If you know me, you know that I love music, especially live, original music. I have always supported the art and I hope you will share her music with those that you care about. The best thing for a musician is to be able to make a living doing the thing that they love to do and have been gifted with. I believe that Jennifer is gifted, and I hope she will be able to do this for her own beautiful life and make her living doing it.

Here's the link: http://www.youtube.com/watch?v=JrMup0Ynx5g

All the best...more from Hawaii.
Peace,
Bill

Fear and Parenthood

Fear is an interesting thing. A while ago, I said "Fear seems to have left me." Which is mostly true. It's not like I have shrunk from challenge in my life because of fear, but certainly there has been some level of it smoldering under my decision making canopy over the years, whether it be professionally or personally. Sometimes fear is healthy, sometimes it is good. Sometimes it can be extremely destructive or at least counterproductive.

Over the past couple of years, I have made a conscious decision to "not fear anything." At least not for more than a brief period of time, which may be considered terror anyhow, not fear. In the face of certain loss, you realize that fear is generally counterproductive. In the face of death, you realize that fear is useless.

As I pondered my recent trip to see U2 in Atlanta, a bit of fear snuck in...what if...a plane crash, a car crash...something bad might happen and then where would the girls be? Well, you can either be paralyzed by these types of thoughts or you can feel them and then let them go.

None of us knows when our time is up. I'm not saying I will live my life recklessly, for I know I have more responsibility now than ever, but nor will I shrink from opportunity, adventure, productivity or life in general because I fear a possible future.

As you probably know by now, I went to Atlanta, I spent good quality time with great friends, had a fortunate meeting on the plane with an ex hospice grief counselor and learned some great ideas, went to cool places, got in the Georgia Dome with 90,000 like-minded fans, got a pass to get on the floor (Fedexed in from one of Heidi's dear friends from college) and when U2 opened up, I was 20 feet from the stage. I held my arm up in the air with "4 Heidi" scrawled on it and cried during Walk On. By myself, yet surrounded, I felt somehow comforted in the throng of humanity and the warmth of the message that the song provides.

The Girls and I are all going to Hawaii. We will take Heidi with us and we will let her go where she wanted. A lot of you have contributed to this journey and we will live it. We will love it for whatever it is, and I will write about it too, so you can share it with us. We continue to thank you and to be thankful for you.

Peace,
B.

A prayer from the heart....

No matter how strong your faith, you can always hope for a sign...a sign that someone is there, a sign that they are in a better place, a sign that they are with you in spirit...

The scene is dinner last night at the kitchen table. Myself, the Girls, Uncle Clyde and Grand Pop. A few days ago I taped some of Heidi's photo cards from the funeral services together to make a circle of her photos around a small sunflower arrangement on our table. this circle is flanked by candles to light up her beautiful face.

Jillian (8 y.o) asked to say "the pray" (grace) before dinner and so she got the honor. She said "Dear God, If I could just have a sign that Mommy is in a better place." This simple prayer left me somewhat astounded, as it was sort of out of the blue for her. She had not spoken with me about signs or directly about any of the events that we have been talking about around here. Clearly, she has overheard some of us talking over the past few days about "coincidences vs. Godincidences", as my Dad likes to call them.

After the prayer I told her...they are all around us Jilli, you just have to keep your eyes and your mind open.

Well, about halfway through dinner, one of the lit candles began to spark up 2, 3, 4, 5 inches and flicker. Just like that...no wind, the other candle was perfectly still, yet the candle closest to Jillian began to shimmer, flash and dance, more like a firework than a candle. Jillian looked at it and with a huge smile on her face, said "Hi Mommy."

We all did. It turned from a candle in to a beacon of hope and faith in that moment, and then just as quickly, back into a candle. It was a beautiful moment, and too me, it shows the power of a prayer from the heart. This time, a little girl looking for a small token of hope or a re-inforcement of faith...asking a simple request of a wonderful God full of Love and Compassion, who does not overlook the details and does have a "perfect plan."

Thank you God, for I am human too.

Peace.
B.

An Anecdote from last week.

Hi Everyone.
I just wanted to share a story from last Monday night. Heidi was a beautiful, fun loving, strong, strong, strong woman. She fought until the day she died.

For the better part of a week before she died, she was in and out of lucidity. She would be coherent one minute and incoherent the next and as the week went on, she was spending less and less time with us. On the night before she died, I had the news on in our room with the volume low to help her take her mind off our immediate situation, and Heidi always scoured the news for any kind of hope. A piece came on the news about a "Flu Shot Soup." Which was a Vietnamese restaurant's culinary answer to the flu season here. In Heidi's mind, this story was a story about a just announced cure for ALS.

She did not hear the actual story, rather the story she desperately wanted to hear. She looked at me clear as day and in a strong voice said "Bill, call Amy, tell her that they found a cure. (*Amy was Heidi's Hospice Nurse*) SIT ME UP! THIS IS BIG, MY LIFE IS ON THE LINE." Lisa and I looked at each other, thinking the same thing..."What is she talking about???"

I realized she was watching the News, so I went to 9News.com to find the story that had roused her so. In the mean time, we called Amy and got her voice mail. I am sure it is a very strange voicemail. Heidi had not spoken that clearly all week except for just a few times when she was agitated. Once I found the story link on 9News.com I played it and asked Heidi if that was the story she had seen. She looked sad, nodded and fell back into her "other place." She died the next night.

I just wanted you to know that she never never never gave up.

My Eulogy...

All, below is the eulogy that I gave yesterday for my beautiful Heidi.
A couple of notes: I have not slept well in days. I think prior to this, over the past 4 nights, I actually slept about 8 hours total. It wasn't because I didn't try, I just kept waking up and thinking about things...especially this Eulogy. How was I going to do this? Where was I going to get the strength?

I have tried to capture it with some notes inserted for you to get a better sense of the atmosphere, but I can't really tell you what it was like from the pews...

In any regard, please read this with love in your heart. We do have video of this and I hope, at some point, to post it on this blog so you can see it as well, but for now, just read it and know we love you.

Peace,
B.
====== Begin Eulogy =====

Bill: “I wrote on the top of my paper this morning “This is a celebration, SMILE!!!” with a big smiley face….”

I have something prepared, but I would like to revisit yesterday’s service for just a couple of minutes:
(Bring the girls on stage… )

“My girls, you Inspired me yesterday with your strength, please come up here for a couple of minutes…

“Everyone, Heidi, the girls would like to tell you something…”

Girls: “This is something we wrote with our mom…”Sedgwick Sisters we are Three, together friends we’ll always be.”

Bill: “Heidi’s mom “Nana” is sick and could not be here today and we know it breaks her heart”

Girls (look at the camera by the baptismal fount): “Nana, we love you, and we miss you.”

Bill: “OK, girls, you have lost your mommy, but remember last night, all those wonderful ladies that came up here to speak? They are all great mommies, and they will always be there for you.

Now, let’s try something. … I bet there are a lot of people here who would also be there for you if you need them. Let’s see… if we ask only the people in this congregation that would be there for you if you need them to clap, what do you think would happen? Do you think anyone would clap?

(I raise my hands to the group…All 500 or so people in the congregation clap resoundingly. Wow, but as if I expected any less.)

Bill: “Ok girls, go sit down, I Love you.”

Jenny: I was inspired by your comments last night too, but I would look ridiculous in sparkly high heels up here, so forgive me.

(The crowd laughs again, Thank God.)

Every good business man has a plan B. A couple of days ago, I asked my buddy George Hartshorne that if for some reason I could not do this, if he would come up here, bail me out, and finish this. George, I love you brother, but I will give you the day off. … Instead, I will do what I have always done which is draw my strength from you all. ===pause=== I have been over this material several times and I know there are some hard spots for me. If I need to take a moment, I would ask you to clap your support and just give me a few. I know I can recover quickly now. I also know that I don’t want to just “get through this”. I want this to be special and I know now…. that no one can do this for me.

So here we go…

If you know me, you know the suit was Heidi’s idea. I would have been up here in boardshorts, sandals and a T-shirt… probably something with a big fish on it. She’s been asking me to get a new suit for several months, I couldn’t bring myself to do it because I knew why she wanted me to, so I waited…
===Long Pause===
(The crowd laughs…thank God.)

I know what Heidi would say if she were here in person right now. She would have thought about all of you and she would have said…
“Bill, It’s 11 am on a Saturday during soccer season…did you really schedule this right now?”

(The Crowd laughs, Thank God.)
==Take a deep Breath==

To which I would try and say something charming like “Honey, I was only thinking of you” But I would actually say “Honey, at least I got the suit.”
(Bill raises his hands and looks to the sky)
“Really, I am not going to spend my time up here talking about Heidi and what a wonderful, beautiful, intelligent, caring, funny, amazing, strong, fantastic, loving, passionate, genuine, gracious, stupendous, incredible, generous, supercalifragalistic woman she was. That would be too hard…
See how I snuck that in there, it was the only way that I could have done that…..
==Take a deep breath== (The Crowd Claps)

No, What I will do today is offer you thanks. Thanks for all the meals, the time, the prayers, the friendship, the love… most of all, the Love. It is what Heidi would have wanted me to do today.
And she would have wanted me to give you something back, a token of our gratitude, something that will lift your heart today. So that is what I want to do with my next words.
====Take a Deep Breath!====
I want to try to answer a couple of questions for you, questions that have been on all of our minds for the better part of 3 years now.

The first question is “Where is OUR miracle?”

Well, you probably know that in April of 2006, on the day of Jillians 5th birthday party, three and a half years ago now, Heidi had emergency surgery because she had lost half of her blood internally due to an ectopic pregnancy. When they took her away on the hospital gurney that day, things did not look good. I did not think I would ever see her again. In that moment, I prayed to God from my heart. “God, please don’t take her now.” I asked. And though I did not know it at the time, and of course you did not know it at the time, I bet that I prayed that request of God for all of you too.

Four days and several complications later, MIRACULOUSLY, we were on our way home.
So, where is our miracle? We got it. We got three and a half “bonus” years with Heidi, over a thousand days. Our Friend Kathy Murphy gave us a plaque a couple of months ago that Heidi loved, it has a prominent place on our mantle and it says ‘Each Day is a Gift.’ We received over a thousand gifts from God.

We received time to go to Hawaii, a place that she dearly loved, with our girls. We received time to ski, time to hike. Later, we received time to sit and talk, time to hold on to each other, time to sit in her lap or have her sit in ours, time to love. For her most of all, we received time for Jillian to grow from 5 to 8; Rachel to grow from 6 to 10 and Shelby to grow from 9 to “almost 12.”

I know it sounds strange that we all prayed for a miracle after we actually already had received it but I believe it is true and I hope you will too.

====Take a Deep Breath====

So, this leads me to the next question I hope to, in some way, answer for you.
“WHY?” “Why did this have to happen to our Heidi?”
Well, here’s what I believe. God knows better than we do what was best for Heidi. God has a plan and God’s plan is perfect. That there was something else, something more important for Heidi’s spirit to do than hang out here, with all of us. I have faith in that and it has comforted me.

A lot of times, this is a tough one for us humans to grab on to and we think about it a little more. What could possibly be more important than Heidi being here with us???
Well in the spirit of giving you something back, please allow me to “go there” for a couple of minutes.

First, as I thought about this, I remembered that God’s plan is perfect. Maybe God knew that the best place for Heidi to watch over and help her Girls was from heaven, not from here. Maybe she will be more powerful for them as a mom up there than she ever could have been here. This thought gave me comfort then and it still does. I hope it will do the same for you.
====Big Pause…The crowd claps…..===Take A Deep breath=====

“Ok, this is a tough one….

Second, Heidi thought about this too. She thought A LOT about it. One night, not very long ago, she told me something that made me smile and lifted my heart. Now, bear with me for one moment while I say that Heidi was an AMAZING mother to her babies. She went through labor with no help from drugs, she nursed them for a very long time, she protected them from harm and provided for them everything that they could ever want or need. She made this the true focus of her life and she was simply an incredible mother.
That night she said to me, “You know, babies die too sometimes. Think of all the babies in heaven that need help. Maybe God needs me in heaven to take care of all those babies that are up there.”

This thought comforted her in her darkest hours and I know that she would hope that it will comfort you as well.

These are just two possibilities. We can’t ever really know God’s perfect plan, but we can at least wrap our brains around some beautiful possibilities.

So, let’s leave here today with our hearts lifted, knowing that Heidi is free now to do the things that she wanted to do and let us be thankful for the “bonus time” we had with her. Time to do all those things and share all those thoughts and make memories that we never would have had a chance for. Let’s picture her more powerful than ever, looking down over us and especially her Girls. Let’s picture her loving spirit in heaven taking care of babies that need her. Let’s know that God knows better than us what was right for her spirit.

=====Take a Deep Breath=====

Let’s live our lives every day, thankful, strong and to its fullest.
It is what Heidi...
Heidi your friend,
your daughter,
your cousin,
your sister,
your mom,

It’s what Heidi, MY LOVE, would have wanted.
Once again, Thank You, and God Bless You.

Oma's words...

I will post my eulogy later today, but the words that follow are Oma's (my mom's) from the Friday service.

Although some people say I'm good at many things like painting, coaching the children in tennis, writing and reading, cooking for the family.. and having Heidi eat for me.., I cannot speak tonight. Luckily I have very able sons.

Heidi Bug was a daughter I never had..she was smart, for example getting her masters, CPA and almost having Shelby at the same time. Heidi was always thinking of others..For example..She wanted me to get special flowers for her dear friend Kate. I showed them to her in her bed this Tuesday afternoon, although she was very, very weak, she smiled and said, "Thank you, Oma "...her last words to me.

Besides thinking of others, Heidi was Sporty too..playing tennis in the sunlight...Fun Loving...Dancing to Hawaiian music and planning Rachel's Hawaiian Birthday Party...But most of all, Heidi Bug was Caring..CARING for my wonderful son Bill and CARING for her lovely daughters, Shelby, Rachel and Jillian. Opa and I have good memories of Heidi..tennis, ski trips, painting, working together around the house. We will certainly miss her smile and cheerful attitude. We loved her very much. Oma and Opa

The sun is shining...

God let it rain with our tears for the last 3 days. If you know Colorado, you know that this is rare. The sun is out today and with it I feel hope. Thank you all so much for your continued messages and feelings about all of us. I feel it and it is helping me very much, even though it is causing the tears to flow like the rain we had.
I was going to tally up the messages of love and hope that I have received on FaceBook, but there are too many. I feel like over the last 2 years and especially the last day and a half that I have experienced more love than just about anyone on the planet and there are no words that can express my gratitude for that.
Peace,
Bill

Services information, etc.

All, this is a copy of an email some of our dear friends have organized. They have given me the opportunity to grieve and have taken the reigns on the details of our formal get-togethers that will celebrate Heidi's life.

The "donation in lieu of flowers" idea, is, of course, theirs and all I can say is that I am humbled by it and recognize that the opportunity that for you to participate in something that Heidi wanted more than flowers that will perish in short order, is worth swallowing my pride in terms of accepting cash for anything personal. Rest assured, I don't "need" the money and anything you want to put in this account will be spent towards Heidi's final wishes to be buried at sea off the North Shore of Oahu. Please know that I will fulfill her wishes without regard for any donations and leave no responsibility anywhere near your direction for this.

All my best regards and love belong to you.
Bill
=========
Begin forwarded message:
=========

Our Beautiful Heidi is at peace at last.
We would you all to come help us celebrate her life.

Vigil Service
Friday, September 25th at 6:30 PM
St. Mark Catholic Church
9905 Foothills Canyon Blvd.
Highlands Ranch, CO 80129

Funeral Mass
Saturday, September 26th at 11:00 AM
St. Mark Catholic Church
9905 Foothills Canyon Blvd.
Highlands Ranch, CO 80129


To help your children share their condolences with
Shelby, Rachel and Jillian please feel free to bring their
Mom's favorite flower, a sunflower, to the Friday evening services.

If you would like to make a donation in lieu of flowers,
donations can be made or mailed to:

US Bank
C/O Bill Sedgwick
Account number 103679326035
Wildcat Reserve Office
Inside King Soopers
DN-CO-4535
2205 Wildcat Reserve Parkway
Highlands Ranch, CO 80129

Your donations will go towards a trip for Bill and the girls to take
Heidi back to the place she loves the most....Hawaii.

* As you know it is very difficult to find a group email list.
So if you can please look over the list to include anyone you know who we have neglected and forward this to them,
we would appreciate your help.

A beautiful poem...

Shared by a friend to me on FB today.
Thanks so much everyone.

=======

And if I go while you are still here......

Know that I still live on,
Vibrating to a different measure
Behind a thin veil you cannot see through

You will not see me,
So you must have faith.

I wait the time when we can soar together again,
Both aware of each other.

Until then, live your life to the fullest.
And when you need me,
Just whisper my name in your heart,
..........I will be there.

-written by Colleen Hitchcock

My Butterfly...

Has left her cocoon.

My beautiful Heidi passed away this evening in my arms.

Life will go on. God bless her.

Good night.

B.

Running to Lie Still

If you know the song, you'll know I wrote the lyrics differently than Bono did, but here's how it came out...

(To Running to Stand Still, U2: Joshua Tree)

So she woke up, woke up and there she was, lying still
she said
I wish I could do something about where were going.

I'd step in front of a steam train
to get out of this pouring rain
maybe...
run though this darkness to the light.

Singin'...ah a la la la de day. Ah, la la la de day Ah la la de day...

Sweet serenity, but bitter, this taste, in my mouth.
You walk though the doorways only to find there's no way out.
You gotta cry, but your weeping, and then you talk without speaking
you'd scream but you can't raise your voice
you know i'd take the poison from the poison stream
and float right out of here

Ah la la la de day....Ah la la la de day....Ah la la la de day...

So she lies in the bed with eyes painted black
under a white sheet that might as well weigh a ton.
Needing movement, needing strength,
Wondering through all of this, will it be won?
out there, a storm is raging...its raging
and a pain blows up in her eyes

though I
will suffer this fall's sweet chill

i'm just lying here once again... still.

Busy times...

It's been a while since I posted, and to be fair, most of my recent posts were leveraging Steve's great writing. The Ironman for Heidi was such a great idea and a hit on so many levels. As of today 168 people signed up for the event on the Facebook Group, and i'm sure many more were following on the blog. The Hope for Heidi page is now showing $12,665.00 in donations, which is up $3000 from when Steve first conceived the idea, and since the site does not update donations automatically, there's probably more to be posted after this long holiday weekend.

As you probably know, with ALS, there is nothing we can do to prevent the dieing of neurons and the subsequent wasting of muscles, so the Ironman is a fitting "opposite" in terms of demonstrating the possibilities of human strength and endurance. This obviously does not end here and as long as Steve, or any other Ironman athlete wants to participate "4 Heidi", it will go on. Thanks again to Steve and Laura, and to everyone else that supported and contributed.

Peace out for now.
Bill

Steve's account of the Ironman...

Below is Steve's amazing and awe inspiring account of his race. As you read, you will see that an Ironman is nothing to be taken lightly, people literally die competing in these things. Thank you again, Steve, you have lightened Heidi's heart and inspired all of us that know about this. I've never been much of a runner, or a biker or swimmer for that matter, but next year I'll make it if I can...maybe they will have a beach volleyball tournament to accompany the race next year. I hope you qualify for the Kona race in the 45's. It would be hard to keep me away from that!

======Begin Steve's 2 part message...=======
Ironman Canada Race Day -- August 30
The Ironman for Heidi project is one of those rare, great life experiences. And as an added bonus, it just happens that this experience has given me more than I have given it. Though I did donate 7834 burned calories to the effort yesterday.Let’s start the story of the Ironman with the day after the Ironman. Because today I learned just how lucky I was to finish.

I awoke and limped to the bathroom, where my legs objected to the squatting motion necessary to sit on the toilet. So I stood a couple feet further in front of the toilet than is usual and fell back, catching the toilet seat behind me, then executing a triceps press into the seated position. My stomach muscles screamed for mercy.

After a cup of coffee, I checked out my bike and realized that my rear tire had gone completely flat. This same tire held air all throughout the 112 mile bike-leg yesterday. I then flipped through the newpaper account of the race and learned that a man died during the swim. So, already, by any measure, I was fortunate yesterday. Here’s how it unfolded.

At 3 a.m. on race morning, I executed my normal pre-race routine -- 3 Boosts, a bottle of Gatorade and one very strong cup of coffee. The goal is to use the facilities before the race, because, while most Ironman competitors think nothing of peeing themselves during the race, we generally draw the line at solids.I got to the transition early and headed over to put on my wetsuit, pump up my tires and get body marked (this is where they write your race number on your arms with magic marker so that they can identify the body, quite literally). I asked the woman with the felt-tip to upgrade my “4 Heidi” tattoo while she was at it. She asked about Heidi and wished her well.

Before heading to the water for a warm-up swim, I stumbled into Jeri and Monica, two women who are on the same club team as me. I helped them put on their wetsuits and we started walking towards the beach. We walked past a line of competitors who were waiting to use the porta potties, so I asked my friends whether they needed to make a pit stop before we headed for the lake. Monica said: “I’m peeing right now”. I love this sport.

The swim start is perhaps the most impressive spectacle in Ironman racing. Because all 2600 athletes start at once, the starting line is perhaps 300 yards wide and 20 rows deep. Everyone futilely looks for that special starting spot where they can avoid the hand-to-hand fighting that is part of the Ironman swim start. But I have learned that there is no avoiding the contact of the swim start. So rather than wasting time trying to avoid it, I decided to confront it head-on. I seeded myself in the front row, in the middle, knowing that a few hundred faster swimmers would provide me an opportunity to swim faster in their substantial current. Unfortunately, those same swimmers would beat me to a pulp as they raced for the front of the pack.

“Maranatha”, the Ironman Canada cannon fired, and I immediately dove in and began swimming for my life. The contact was immediate and personal. I may have accidentally fathered a couple children in the first two hundred yards -- or I may now be gay. It’s hard to say. As always, the water became less congested after the turn-around at the 1.2 mile mark. I followed some big feet with a red timing chip strap most of the way back to shore and exited the water in 1 hour 8 minutes and some change.

I transitioned to the bike and was moving along briskly for the first 35 miles. Unfortunately, the fun ended there as I hit the first 1500 foot climb at Richter Pass, riding with about 15 guys and gals going roughly the same pace as me. Most of the group shot up the climb like they were riding the Tour de France. I rode conservatively at the back, in part because I had to pee and didn’t want to douse anyone, and in part because I was fearful of turning the marathon into a 26 mile walk.After cresting the pass, I put my nose on the front wheel and quickly had the speedometer pegged at 45 mph on the steep 5 mile downhill. One by one, I caught my hard working friends before the bottom and we reformed our group, minus a few timid souls who rode the brakes down the hill. I must have really nailed my hydration, because I had pee again (the second time is always easier. You’re not worried about being covered in urine, since you are already covered in urine).

It was at this point that we noticed trouble in the wind, literally. The wind was blowing at about 30 mph from the west directly at us, which in and of itself sucked, but we were really worried about the eye watering smoke that the wind was pushing into the valley. There are 200 forest fires raging near the Okanagan Valley and the wind had shifted -- in a bad way. We soldiered on, taking shallow breaths, as we rode over an endless series of rolling hills and finally, 20 miles from end of the bike, up the dreaded Yellow Lake Pass. Yellow Lake is a 7-mile, 1500 foot climb, the last really tough stretch before the descent back to Penticton.

Having ridden conservatively to this point, I felt remarkably strong going up Yellow Lake. And with the energy supplied by hundreds of spectators lining the road on the steepest part of the climb, the ascent was not entirely unbearable.After the climb, I still had plenty left in the tank and was riding at a good clip on the flats back into town, when I was caught by a guy named Doug.Being the only survivors from the original group of fifteen and with our bike-to-run transition just a couple miles away, Doug and I allowed ourselves a brief moment of human interaction. We rode side-by-side through town with fans lining both sides of Main Street, Penticton, soaking up the cheers of the crowd. We were smiling at each other, and Doug was saying that he was glad to be done with the bike-leg, when suddenly, a small child jumped from the crowd into the road directly into Doug’s path. There was no time to stop. I heard Doug shout, “Watch...!” The rest was cut off by the sickening sound of Doug’s bike smashing to the ground. By the time I slowed down and looked back, a number of people, including race officials who were guarding the intersection, were surrounding the crash and it was impossible to tell how badly he was injured. I considered going back, but it was clear that there was nothing for me to do. Another group of riders came up from behind and I made the difficult decision to get moving again.
=====Part 2=====

I rode into what we call T2 (the transition two -- the first being the swim to bike transition -- T1), with a 5 hour 22 minute bike split. I expected to go about 5:20, so in the world of day long races, I was right on time. I needed to run a 3:30 marathon to finish in 10:05 -- a stretch -- but a 3:45 marathon seemed achievable.With that thought in mind, I threw on my running shoes and began the marathon.

I hoped that my conservative bike ride would translate into a solid 8 minute per mile run pace. And it did -- for two miles. Then it settled into something in the 9:00 to 9:30 per mile range and no amount of effort would allow me to run faster. Even peeing didn’t help. It just soaked my socks, making them squishy and uncomfortable. On the other hand, I seemed to have good endurance and I was confident that I could make up ground on my competitors by being consistent, if not fast.

Sure enough, at mile 10 I began catching and passing a number of the gazelles who had sprinted out of T2. Some were walking, others were enjoying time in the porta potties and still others were bent over the guard-rail ridding themselves of GU’s, Gatorade and whatever else wasn’t digesting. I trotted along like this for mile after mile after mile. That is, until mile 22. Mile 22 for a marathon runner is a dark place. It is at this point in a marathon when many “hit the wall”. But in an Ironman, mile 22 of the marathon means nothing. It’s 136 miles into the race. Everything hurts and life has sucked for a very long time. In fact, mile 22 of the marathon is so close to the finish that some people get their second wind at this point. But at mile 22 of this marathon, I slammed into the supposedly non-existent wall so hard I almost broke my face.

It all started when the standard-Ironman-issue searing pain in my quads warned me of an impending cramp. So trying to stave off quad cramps, I changed my running style to shift the work to my hamstrings, which had the effect of causing pain in my left knee. To alleviate that pain, I adopted yet another running style, landing more on my forefoot. And that’s when a little known muscle tucked behind the achilles tendon cramped so hard it almost felled me. I gingerly walked a few steps and found that those achilles muscles didn’t mind walking -- they just hated running.

By this time, my original time goals were not achievable due to my slower than expected marathon, but there was no way I was going to miss out on finishing under 11 hours -- unless, of course, I couldn’t run. In which case it didn’t matter that I had over 50 minutes to travel a mere 4 miles. I couldn’t make.I took a deep breath and looked at my arms. “4 Heidi” was why I was here and I knew then that it didn’t matter when I finished, just that I needed to finish. I instantly felt calm and more relaxed than I had been all day. And as I continued to walk I could feel the cramps easing. After a minute or two, I tested out a jog. And then, almost like an out of body experience, the jogging began to feel like floating, literally like running on a cushion of air. From that point on, whenever I started to feel tense, I would look at my arm and that would calm my mind, and the mind would do what the body couldn’t.

I easily ran the next two miles in under 20 minutes and knew I would have no trouble finishing in under 11 hours. I was inspired and relaxed and nothing would stop me.About the time, I ran up behind one of my competitors who was walking. His name was Josh and he was clearly in bad shape. As I ran by, I said “come on, let’s finish this”. This is a pretty common thing to say, but generally the response is “I can’t run because of _______”.

Josh looked up and said “let’s do it”, and began running beside me. We spent the next couple miles chatting and encouraging each other, all the while working our way closer and closer to the finish line. As we broke the tape and were caught by a couple volunteers, we cemented our friendship with a sweaty hug and a picture.It was a great way to end the day. It ended just the way it started, inspired by friends, first the old, then the new.

For the record, I finished in 10 hours 54 minutes and 7 seconds. John Davis wins the Ipod with a prescient guess of 10:53:20. Brett Warta finished second, winning the Canada Speedo prize, which is fortunate, since he may be the only other person who fits into a size 28 banana hammock. Honorable mention goes to my old fraternity buddy Otto Koerner as well as Todd Renard and Barbara Kelly who all made guesses within about 4 minutes of my finishing time.And also for the record, in the never-say-die spirit of the Ironman, Doug not only remounted his broken bike and made it to T2, he strapped on his running shoes and finished the race.Thanks everyone.

After I start walking again, maybe we'll talk about Ironman for Heidi II. The one where someone from this group joins me and straps on a matching speedo for charity. :) And yes, Kay. The picture will be on the way shortly.
=======END====

THANKS AGAIN STEVE!

Update from Steve and a little more

I'm sitting down with my "Tim Hortons - Always Fresh" cup, which I my buddy Big B Gatzke schmoozed out of the Timmy's store on Vancouver Island about 10 years ago on a salmon/steelhead float trip. Figured it was a fitting java holder for my read of Steve's post this am. Sounds like he's got a bit of the pre-race jitters, which I certainly would have if I were swimming 2.4 miles, Biking a hundred and twleve and then tacking on a full marathon. In fact, I think I would be feeling faint, but then again, I have not trained like Steve has, so that would be expected. He's going to do great and show him some support on the FB page with encouraging messages like "Go get 'em Steve" or "I'll guarantee you a spot in the final of the US Open next year if you hit my time." or "If Earl Boykins can play in the NBA, so can you." Of course neither of the last two make any sense if you don't know that early in his sports career Steve excelled at both Tennis and Basketball, and probably would love to be a pro of either, at least a little more than grinding out a gruelling course in the hills of Canada's wine country, but alas he's just a finely tuned grinding machine these days. Of course, if you don't know that Earl Boykins is about 5'6, then you don't get that joke either, but that's OK.

Here's Steve's post from this am...GO GET 'EM buddy!

=====Begin Steve's post======

Penticton, Canada -- Wednesday, August 26, 2009 -- Wow, we’re here.

“Spectacular” is a fine word to describe the drive from Bridal Veil east to Penticton -- one-hundred miles of mountain peaks and rivers . I used up a camera battery shooting blurry pictures through a dirty window while Laura slung the FJ around a million hair-pin turns.

By the way, Canadians don’t have $1.09 per gallon gas or 100 mph speed limits. It just seems that way to people who use the English system of weights and measures. After 2 days in Canada, I realized this when I filled the FJ with 53 gallons of gas. It only held 20 gallons in the U.S.

After stopping at a road-side fruit stand about 30 miles outside Penticton, our route merged with the last 25 miles of the Ironman Canada bike course. I watched as the elevation went from 1,000 feet to 2,500 feet in about 7 miles. At first, when I told Laura we were on the Ironman bike course, she said, “no way, this is too steep. They don’t make you climb mountains in an Ironman.”

I agreed, hopeful that she was right as usual. But even the infallible are sometimes un-right (which is different than “wrong”, a word that I don’t use when speaking of opinions offered by my superiors).

So, if you’re tracking me online and you see my average speed drop from 20+ mph over the first 90 miles, to a speed that makes it appear that I have dismounted the bike and am carrying it up the mountain -- you will know that I have arrived at Yellow Lake Pass.

Penticton, Canada -- Thursday, August 27, 2009

This morning around 8 a.m., I went for a 30 minute swim on the Ironman course. The water is clear, the bottom is soft sand and the water temperature is 70 degrees. If I weren’t visualizing myself being consumed by the violent maelstrom that is the beginning of the Ironman mass swim start, this might have been one of the most peaceful open-water swims I’d ever done. Unfortunately, all I’m thinking about this morning is a strategy for surviving the first 1000 yards of the swim without swallowing gallons of water and a fellow competitor’s fist.

So much physical and organizational effort has gone into preparing for this one day that a person can’t help but to consider all that might go wrong. In Laura’s first Half-Ironman earlier this year, she was kicked in the right eye in the first seconds of the race and had to swim 1.2 miles with the right side of her goggles flooded. In Ironman races, people commonly suffer heat stroke, dehydration, over-hydration, hypothermia, blisters, sunburn and any number of gastric maladies. So preparation is critical. Unfortunately, I’m more known for overcoming my preparational shortcomings than for getting the preparation right in the first place.

This afternoon, Laura introduced me to Philip, a fellow Ironman competitor who is staying at the same B&B as us. Philip is from Frankfurt, Germany, which I’m taking as a sign that someone is sending us army brats a message.

Because Philip and I were both a little nervous about the extent of the climbing we’d be doing on the bike-leg of the race, we threw our bikes on the FJ and drove to the foot of the first long, steep climb at mile 40 -- Richter Pass. The climb was 7 miles long and it took us 30 minutes to climb.

Naturally, the ascent seemed easier than it will during the race. For one, we started at the bottom of the climb, not 40 miles north at the swim-to-bike transition. Neither had we completed a 2.4 mile swim. Nevertheless, we were happy that it wasn’t one of those hills where you’re forced to stand on the pedals and tear your bike to pieces, inching you way to the top.

Tomorrow morning is the underpants run. Pictures to follow, Speedo fans.
============End Steve's post=================

I should be done on that nice light note, but I am re-posting another comment on my string about Mindy Goodin. This type of post is something that I think is important for all who read the blog to see, and if I don't re-post, most who read this blog won't see them. Fortunately, I am notified whenever there is a comment on one of my posts. Here it is:
=====Begin post from Anonymous poster=======

Anonymous has left a new comment on your post "OK, this one a long time coming...Mindy...Why?":

Bill, my wife went to see Mindy a few years ago for a chronic fatigue/ achiness/ muscle weakness/ neurologic symptoms. She had already seen neuromuscular specialists in Denver who thought she had a viral illness causing her symptoms. Let me preface this further with saying that I'm an internal medicine doctor. She told my wife to take a whole bunch of different antibiotics for lyme, parasites, and who knows what. I didn't agree with it, but my wife went ahead and took them. No help at all. I talked to some specialists in infectious diseases who said it's all a scam and that nobody who really looks at the case thinks Dr. Martz actually had ALS.

The problem is that scam artists like them take advantage of people who have these vague illnesses (in some cases like fibromyalgia, chronic fatigue, etc, which have symptoms which are vague and can be related to any number of things) or established illnesses like ALS where there is no cure, and essentially think it's all the one think they want it to be (and that gets them money). The way she diagnosed illnesses and the treatments she gave are completely random, unfounded, and definitely not based on ANY research (I looked!) If I practiced that way, I'd be guilty of malpractice. I completely understand hoping for a cure, as I had a friend die of ALS at 35.

To anyone reading, I'd also say to put your efforts into finding respectable researchers at good institutions. Fortunately my wife stopped seeing Mindy (but not until we shelled out a lot of $) and fortunately we haven't heard from her since.
=====================End Post=================
My comment: Thank you very much for this post. It is another sad story related to Mindy, and the more I read things like this, the more angry I get about this. I don't have time or space in my heart for any anger right now, at least not any more that tries to creep in on me every day, so I have to let this pass, for now.

Peace,
B.

Steve's second post from the road

Hi All,
Attached is Steve's second post from the road. He's already done a third, so I'll post that one later. I am enjoying Steve's writing and love his humor. Some of the photos on the FB group page (Ironman for Heidi) are really funny, so if you have access, you should check them out. As a side note, i am not sure how much money has been contributed to cause as a result of Steve's great idea, but the Hope for Heidi page has just recently cleared over $11,000 raised in our quest to reach $50,000.00 for ALS-TDI.

On the home front, we are still battling. I received a different, manual wheelchair for Heidi yesterday from the local ALS Association's closet, and hopefully today we can test it out and it will work for her. Times are tough, but all your support encourages us all. Thanks again.
Bill

====Begin Steve's 2nd Post =====
Port Angeles, WA 3:30 p.m. -- August 23, 2009
Laura had to drive the whole way from Eugene to Port Angeles. It was my job to make ferry reservations and that didn’t happen. Without a reservation, we absolutely had to get to the ferry by 3:30. No 3:30, no boat. No boat, no Canada -- and were ready to meet some Canadians, dammit!
We made it at exactly 3:30. That gave us a couple hours to enjoy Port Angeles, which, for a town built with a fisherman’s wharf feel, has a strange affinity for metal statues. Naturally, I felt compelled to see if the the statues looked good in a Speedo, to Laura’s chagrin. Check out my IM for Heidi pictures for the best shots.
The boat crossing to Victoria, across the Straits of Juan De Fuca, was rough. The ferry held at least a hundred cars and RVs in it’s hold and still that sucker rolled a ton. Laura was looking a little green for a while, but I distracted her by discussing my strategy for swimming to shore if the boat were to sink. Landing in Victoria, we had a little trouble with the border patrol -- not that we were dealing with Sherlock Holmes. First, we said that there was no fresh fruit in the car. Fortunately, Canadians appear to have never seen bananas; otherwise they would have noticed an entire 5 banana bushel sitting in plain view on the center console.

Then they asked for not only our passports, but our driver’s licenses. I had stupidly forgotten my driver’s license in the last pair of pants I wore in California, but I figured I could muddle through the trip with just my passport. It seems that you are not permitted to enter Canada if you’ve had a DUI, and I had just become a prime suspect. The officer apparently wasn’t buying that I was in Canada to do Ironman Canada despite the triathlon bikes hanging off the back of the FJ. In his mind, I was a drunk driver trying to sneak into the country. Fortunately, for the first time ever, the U.S. DMV came through for me, confirming that I was just an idiot and not someone with a suspended license trying to sneak into Canada.
By the way, Victoria is beautiful!
===========End Steve's second post===================

Steve's first "Ironman for Heidi" update:

For those of you interested, but not on Facebook or on FB, but not in the group, we now have 118 members in the Ironman for Heidi group. Steve cooked up a contest that I blogged about here:http://alschronicle.blogspot.com/2009/08/fun-fundraising.html
and the FB group is here:
http://www.facebook.com/inbox/readmessage.php?t=123792910115#/group.php?gid=140579306281

I don't know if you are not a member of FB whether you can follow the second link and see/join the group. It may only be for people with FB profiles/accounts.

Steve and Laura are on the road...headed Victoria for the Ironman. Here's his first update from the road...good stuff, and some tips of what "not" to do. We are with you in spirt Steve and Laura. Just tell me what "plyometrics" is...or is it are? No clue...
Thanks for the update Steve, fun stuff! Keep it coming!

=====Begin Steve's update=====

Ironman for Heidi daily (ok, somewhat daily) updateTyping from somewhere north of Weed, CA

-- Saturday, August 22, 2009At 9:00 a.m. this morning, the Ironman for Heidi team was packing the car, preparing for the long drive to Penticton, for Ironman Canada. At 9:01 a.m., the Fed Ex man came flying down the street, screeched to a stop in front of the driveway, and delivered the last piece of baggage -- the Ironman Canada speedo. Like clockwork. Nothing stands in the way of the Ironman for Heidi train.Eugene, OR -- Later that dayStopped in at Home Depot to buy Off and some mosquito netting for the first night of camping.

Team Ironman for Heidi were both sick of being in the car all day, so Laura decided it was time to get in some training. We did a quick 3 mile run through the industrial section of town -- not really a triathlon crowd. Laura was getting catcalls from the locals, though I was looking pretty good in my compression socks, so who knows who they were whistling at really. After the run, I joined the other shoppers watching Laura do 15 minutes of plyometrics and push ups in the parking lot. We found a campground around 8:30 p.m. I’d be lying if I said it was beautiful, but beggars can’t be choosers. Laura reminds me that we need to be grateful for what we have and to stay positive, and she’s right. What great showers!

We moved all the luggage into the front seats and set up our sleeping bags in the back of the FJ. With the luggage blocking our side doors, we cleverly climbed in through the rear door and shut it before turning in. Around 1 a.m. I noticed Laura rustling around -- time for a trip to the potty. Unfortunately, the rear door doesn’t have an internal latch. I managed to McGiver us out of there in the nick of time, but that’s going to be a continuing problem if I don’t figure something out soon. Wilsonville, WA, 9:30 a.m. --

Sunday, August 23, 2009 Minor glitch during our second stop for Starbucks this morning. The FJ Cruiser has cup holders in the doors -- very convenient. Before you climb in, you can put your Grande coffee in the door so you don’t spill on yourself. But there’s always a catch. I jumped in, slammed the door, and created what I believe to be the world’s first coffee geyser. Yellowstone has nothing on a cup of coffee with a tiny little hole in the lid getting punched in the kidneys by a door mounted cup holder. No time to wipe up, though. We’ve got a 5:15 boat to catch. Victoria, Canada here we come.
=========End Steve's first update======

More Awareness for ALS: Nancy O'Dell

Yesterday, one of my buddies alerted me to a piece on Fox. Nancy O'Dell's Mom, Betty, passed away from ALS in June of 2008, and Nancy is doing what she can to promote awareness and raise money for MDA and research. Her site is here: http://bettysbattle.org. You can find out more about events and happenings that she has planned on the site.

Nancy is Co-Anchor of Access Hollywood. Here's a link to the piece on Fox from yesterday.
http://www.foxnews.com/search-results/m/25971853/betty-s-battle.htm#q=als

Peace,
B.

The Serial Killer

I had a dream the other night that was very frightening. I don't usually have nightmares, and the dreams that I do remember are generally just sort of strange and confusing. Normally, if I have a nightmare, I usually wind up kicking the ass of whatever was scaring me in the dream and emerge triumphant over the evil that was my nemesis in it. This has been the case for most of my life and therefore, I generally wake up from dreams feeling more a sense of relief and power than dread.

This was not the case the other night. I had a very realistic dream that involved a full on serial killer with a very sharp knife and a very bad attitude. There was a garage with a doggy door that was large enough for him to get through and I knew who he was and I knew that he was coming. I stood there in the door with one of my daughters as I watched him struggle through and emerge into the garage with his knife flashing. My daughter was scared, but I wasn't. I said "watch this" and the next thing you know, a bolt of lightening or something literally vaporized this serial killer into a bunch of ribbons and rainbows in a Disneylike cascade of shimmering gold sparks.

Normally, this would be the end of my dream. But it wasn't. The thing that woke me up in horror was that almost immediately after the light show was over, the doggy door flapped and the head of the serial killer popped through it again. This time with a really pissed off look on his face and my confidence had gone. This was the moment I woke up and the horror on his face, a foreshadowing of the horror he would reap on my family, was the horror I felt when I woke up.

As I lay there in that state of carnal fear, my heart racing, my muscles tense with anxiety, I began to realize that I was not in immediate danger of being sliced to ribbons by a knife wielding killer, but that the face of horror that I saw was the face of ALS and that it's recurrence was the manifestation of the fact that there is nothing that I or anyone can do to help my family, or any of the families that are suffering through this insufferable evil.

ALS is the perfect serial killer. We know it is out there. It gets some publicity. It leaves nothing for the "cops" (i.e. Dr's) to work with in terms of evidence. It strikes without warning. It causes immense fear and suffering before it's work is done. There is no way to stop it. There is no way to even cause its delay. It is the face of fear and all of us should fear it.

This is a villain who's ass I cannot kick. In my heart I know that, and that is why I could not beat it in my dream. All I can do is count on God to give me strength, my friends to support us and the cause, and medical scientists to continue to work to find a cure that will do what I can't do myself...put the serial killer out of this world forever.

Its not a fun place to be as a man. Our job is to fix things, to bring prosperity and protection to the family. To guarantee the safety of those that count on us. This I cannot do.

To have no power over this is the worst thing I can imagine, except to have it. That suffering I have to leave to my beautiful wife, which is also completely and totally unconscionable.

I continue to be humbled by your thoughts, prayers and support. Thank you from the bottom of my heart. I am running on empty, but the strength that I get from you, my friends and family fills my tank every day to the point that keeps me going. These are the things that Rock so hard, that re-inforce my faith and help me believe that this is only the beginning for my family.

Feel my arms around you right now.
Thank you.
B.

Fun Fundraising...

Just a quick update:
I'm going to match the first $300 in donations on this, so let's get 'em in!
For the record, I think Steve will feel the strength on his competition and will complete several minutes under what the experts say he should expect. Plus, I know Steve and he's a competitive dude. My guess: 10 hours, 21 Minutes.
Fun Fun Fun.

All,
One of my old friends from High School in Stuttgart Germany has created a fun idea for a fundraiser for ALS research. He's participating in his first full Ironman Triathlon on August 30th, and has decided to create a contest to guess his time and is going to give an IPod Nano to the closest time. All that is needed to participate in the fun is a donation to the "Hope for Heidi" page, which benefits ALS-TDI. He sent his note out to friends on Facebook, but I figured I'd re-post it here and see who else might want to participate.

Here is his original message, the link to donate is there, and if you would like to participate, donate and then post your time as a message to the blog here, on on the "Hope for Heidi" page with the amount of your donation. Note that the donations on that site do NOT update automatically, even if done via a credit card, so don't expect the little thermometer to move up right away.
All the best,
Bill
=======Begin Steve's Message=====
Hi gang. As most of you know, my/our friend Bill Sedgwick's wife Heidi has ALS -- a terminal condition for which there is currently no cure. It goes without saying that Bill, Heidi and the kids could use our help.

As you may also know, I'm racing Ironman Canada on August 30. And since completing an Ironman requires a tremendous amount Karma, I've created a fund raising contest that I call: "WIN AN IPOD NANO BY GUESSING STEVE'S IRONMAN CANADA FINISHING TIME". (Catchy huh?) It's simple. Here's how to play:
1. Right now, (or at the latest before August 29), make a donation, no matter how small or large at the following website:https://hopeforheidi.alscommunity.org/
2. Send an email to me at skukta@gmail.com and guess my finishing time for Ironman Canada (hours, minutes and seconds, i.e. 10:30:24 or whatever your guess is.)
3. If you are closest to guessing my finishing time, I will send you a new Ipod Nano. (Ties go to the person who made their donation earlier -- the "punish the slacker" rule, I call it.) Nothing else to it. Donate, guess, help a friend.

So that the contest is fair, here's some information to help you estimate my finishing time.
1. This year I have done five (5) Half-Ironman Events. My average finishing time was 5 hours 3 minutes.
2. Knowledgeable folks say that an Ironman is at least 2 times as hard as a half-Ironman PLUS 30 minutes -- if you're having a good race.
3. The Ironman Canada course appears to be average in difficulty.
4. The race cut-off time is 17 hours and 0 minutes. The race starts at 7:00 a.m. Pacific Time on Aug. 30.
You can watch the race and track me at http://www.ironmanlive.com/. Maybe you'll see me run through the tape at the time you predicted, holding a picture of the Sedgwicks.
Thanks everyone. Steve
====End Steve's Message=====

Catching up

Hi Everybody,
I apologize that it has been a while since my last post. It seems there is never enough time in a day to do all that you want to do. With hospice care, we have somewhat of a new pattern and it is still taking some getting used to. Somehow, I don't feel like I have any more time than before, but maybe that is because business ventures are keeping pace with any extra time I may have had, and so I suppose that is a good thing. H's "bed baths" are a comfort to her to not have to deal with transport and sitting up in the shower and although I was fine with giving her her showers, I could see how it was becoming very hard for her to sit up for that period without the support she needed.

Right now, our biggest hope is to get a wheelchair that H is comfortable in enough to go out for a bit. Neither of the electric chairs really work for her anymore and now we just really need something that fits her and is comfortable for an extended period of time. We are working a few angles now. It is so sad that insurance companies won't help in this regard, when it is something that is so necessary for comfort in our situation. By the same token, the companies that provide the chairs overcharge so ridiculously that you can almost hardly blame them. As an example...$7,000.00 is the price tag for a Manual wheelchair that has the necessary support and features. It is ridiculous.

I ran across a chair on Craigslist.com that would probably work and it belonged to an elderly gentleman that also had als and passed about 3 months ago. Apparently they paid (or their insurance did) $6,800 for this chair that he used for 3 months or so. They are still hoping to get $5000.00 for this chair, which I consider a pipe dream, since there is no real market for medical companies to re-sell these chairs. I paid something like $900 for the initial electric chair that I got for Heidi, which worked for quite a while because she was strong enough then to deal with it. The original invoice on that chair was something like $21,000.00 and when we took it to the medical company to re-size it to her, it was going to cost $14,000.00 additional dollars to do that. Talk about a shameful racket. These people should all get a glimpse of what is on the other side of their "business" and maybe they would stop this madness.

In the end, I hope that these folks in Castle Pines will donate their chair to ALSA or a similar organization so someone can use it. This is what we plan to do with all of our equipment once it is no longer of use to us.

I know you probably expect more from my posts than this, but of late I have not been much inspired. It seems like we are in some type of holding pattern with nothing to look forward to and nothing additional really to fret about. Certainly there are some things that are no fun, but I'm not going to elaborate on the negative here.

It has been nice having some family in town and the girls are exhausted each day, which means for easy bed times and good night's sleep. School is back in session, so the days will be somewhat easier for me minus the "entertainment" factor.

Peace,
B.

Interesting Mindy Goodin and Creek Trail related comment:

All, I received an interesting comment on my open letter to Mindy Goodin today.
You can follow this link to see the whole chain. I have already responded to the comment at the bottom of the thread.
Peace,
B.
http://alschronicle.blogspot.com/2009/03/ok-this-one-long-time-comingmindywhy.html?showComment=1249081426490#c6293309978613992262

update: looks like this link goes to the top of my response...scroll up to see the rest.

The Tempest

Last night there was a thunderstorm here at our house that was stronger than any I have ever seen (well, except maybe for one when I was offshore on a small boat in the Bahamas, but that is a different story.) The wind raged making the trees bend, shake and shiver unnaturally. The skies lit up in staccato flashes with unharnesable power squandering itself in the night sky. The rain came down in sheets, turning the streetlight across the Lane into an opaque glow, making the source of the light indiscernible a mere 30 yards away. The hail slammed sideways into the window, sounding like gunfire from a thousand random trigger pulls. As the storm raged outside, I wondered how much force it would take to break the window I was standing behind. I was not afraid that it would break, but I was curious. Fear seems to have left me.

I have had a night to think about that and as usual, I am drawing parallels, this time between the window and myself. How much will it take to break me? Who is standing behind me that I am charged to protect? Is this charge what keeps me strong or is it something inside me that has built up over time like most strength does under daily stress and repetitious exertion?

Bono wrote this: "Who's to say where the wind will take you? Who's to say what it is will break you? I don't know...where the wind will blow. Who's to know when the time has come around? Don't want to see you cry. I know that this is not... Goodbye." It's from Kite and is one of my favorite U2 songs. It might sound trite to quote a song by a popular rock band at a time like this, but the lyrics of a lot of U2 songs have touched me over the years.

Great mysteries are what these things are. Questions I can not answer for you or for myself. All I can do is try to stay strong every day, because if I am the window, I know who I am protecting, and the shield has to be strong. I have four girls who depend on me mightily now.

If I am the window, then maybe you can see the Tempest through me. The storm that rages out there on the other side of me is the storm that rages in my heart and is the same storm that ALS causes for so many families around the world. It is stronger and scarier than any thunderstorm because today it is certain that THIS storm will kill whomever it descends upon. It will take your strength, it will make you and all around you suffer for years, then it will kill you. It is a storm of pain that no Mother should bear or Father should suffer. No child should have to deal with this. No friend should have to see what it causes.

There has to be a cure out there and there has to be a person that has the knowledge to find it, the guts to make someone with the ability to bring it to market listen and the strength to keep trying when all before them have failed.

If I break, then I will have failed and I can not fail my girls, so I will not break. If I get knocked down, You will pick me up, You will remind me that I need to steel myself against the storm for their sake, and I will not break.

Allow me to clarify the metaphor. "You" are my family. "You" are my friends. In fact "You" are people that I don't even know that send us prayers and good thoughts. "You" are those that support ALS research and have hope for a cure, and "You"....are God. I thank all of you every day, whether you know it or not. It is not your responsibility, yet you take it on gladly and with Love. This is very very powerful to witness and I am humble before it. In fact, I now know that I will die unbroken someday, except before God and only if that is His will.
Peace.
B.

Through the eyes of others...

Following up my post of a couple of weeks ago, I was amazed how much positive feedback I got and was very happy that my words touched a lot of people. A lot of my feedback comes via FB, so most can't see it on the blog.

You probably know this, but I write because I feel things and it helps me to get them out there. It's a little bit selfish, actually. I certainly don't write for admiration and the fact that anyone, much less lots of people, are touched and helped by my words is very uplifting for me. That being said, I thank you for the feedback because it encourages me to continue as I battle for our family and against my own personal issues every day.

In particular, one of my friends wrote to me with a note about my "Through the eyes of others" post (http://alschronicle.blogspot.com/2009/06/where-we-are-atand-bit-of-my-philosophy.html), even though I don't think I titled it that way, suggesting that I should add another angle to my list... with his permission I am posting the "conversation" here.

I believe that the truth exposed in his words is as powerful as anything I have ever written.
The conversation consists of his initial message to my post, my response and then his very powerful follow up culminating in the truth I am referring to...wait for it, but it's worth it... Peace...and enjoy.
B
=====
His post:
=====
Bill, Regarding this quote from your blog:"We can try to look at ourselves through the eyes of our parents and our children and hope that we would see a vision of reflection or emulation that brings positive feelings of pride or aspiration and above all Love." This is something I've done a lot lately and it has helped prevent me from going down a dark path. Wise words.

One more thing to add to the list is to look at ourselves in comparison to others whom we admire (maybe you can think of a cool metaphor for that one, like a mirror or something). You are someone whom I admire, and seeing how you care for H (which reminds me of how my dad cared for my mom when she had cancer), and how you are handling the cards you are dealt, is an inspiration to me.
=====
My Response:
=====
Thanks Brother, I guess I look more towards God and try to do what He would expect, vs. comparing myself to others, but there are many good people from which we should not only learn, but also aspire to be more like. With us humans, you have to try to emulate the good and forgive and/or ignore the bad, because inevitably, the bad will be there in some form.
It's why I wish kids would not emulate [the idiot] pro-athletes or put [certain jackass] rock/rap-stars up on pedestals. It accentuates the "need" for money and the free pass to indulgent lifestyle. Don't get me wrong, I'm all for indulging once in a while, but there seems to be an air of entitlement or aspiration to live that lifestyle without regard for more important personal and spiritual matters. ah...just rambling now...take care. Sedg
=====
His Follow up:
=====
Dude,You are so right. I can't say it any better. We have to look to God and can't expect perfection from fellow humans. But it is inspiring when humans do extraordinary things. That encourages us to believe that we can do it too. Which is why it's important for us to reflect God to those who are looking at us (which is my paraphrase of what I think you were saying in your blog, and which is what I think you are doing for the many people who admire you).

Some say that Jesus set the example of how we can reflect God's love. That we can endure the suffering that is required to love others. That's something many people don't get.. that love requires effort and suffering. But the effort is worth it - it is repayed with joy. Maybe it's similar to anything else we suffer to achieve, such as training for a race or studying for a test or whatever. Sometimes it's obvious (the connection from suffering to joy), and sometimes it's a mystery that requires faith. I think I'm saying this to encourage myself, because right now I'm hurting a lot. It's so hard to let go... And I hope in some small way it helps you too, because I know your suffering is immense. And I believe your joy will be INCREDIBLE!

When I explained to a friend how hard it would be to let go of the relationship - that it would be tremendous pain to me - he said "what will it cost you to suffer that in order to protect all that is dear to you [my family]. Jesus suffered for you partly to show you that you can do it too". That blew me away. I never thought of the crucifixion that way before.

Looking forward to telling stories over beers some day! Sending my love and admiration to you, H and your three beautiful girls. You all are inspiration to me.
======= END CONVERSATION=====

Ah...incredible. Let me say it again..."Jesus suffered partly to show you that you can do it too."
I breathe that in a hundred times every day, sometimes consciously and sometimes sub-consciously. I think about the others that might know it and therefore persevere through whatever they might be going through and hope that they do...or will.

Peace,
B.

It's been a couple of weeks!

I have been reminded by several friends that I have not been updating the blog as much lately, and that is very true. My last post was two weeks ago, though it certainly does not seem like that long. I have been extremely busy holding down the home fort and working, not to mention having the kids out on their summer break and needing to "entertain them." Time has been flying by through this cool, wet and green Colorado summer. Rare has been the day that an afternoon could be enjoyed at the pool. Window viewing of lightening shows has been our more common routine.

Our big news is that H was received into the Catholic church on Friday last week in a beautiful ceremony here at our house. Father John from St. Mark here in Highlands Ranch and his whole team have been so great to Heidi and our family. Accommodating a Mass here at our house for H to proclaim her faith was just amazing and a rare opportunity indeed. It is something she has wanted to pursue for a very long time and I am very proud of her for following through with this spiritual dream of hers. They even brought over a choir of 6 with guitars and a flute to add to the celebration. Some cake and Champagne followed and it was just a very special evening with family and a few friends. Even in her physical weakness, she was strong and continues to set such an amazing example for our girls as she battles for her life every day.

I know many of you are worried about her condition, so here is a brief update. She is very weak, but mostly in good spirits. We don't count things that she can't do anymore and the things that she can do are our blessings...talking to us, smiling, expressing her love and thanks, still being able to chew and swallow...how fortunate we are compared to many with this dreadful sickness. Some times are harder than others, but she seems to come through the down cycles and can smile and laugh about many things.

The girls remain happy and are enjoying their summer. They are aware of what is going on and seem to be able to compartmentalize it to moments of sadness that can be recovered from quickly. I am continually amazed at their resilience. Just three weeks left and then it's back to school...3rd, 5th and 6th graders! Unbelievable!

The Hospice people have been engaged, but not overly so, which is what we want. H's nurse is very sweet and has been helpful with medications and other supplies. She is a good listener and has addressed several of H's concerns in a very compassionate way. We have also seen a social worker and a pastor, but have not felt a lot of need for them to spend time with us as of yet, and definitely would want them to be with people that need them more right now than us. They have medications and equipment delivered to the house, which has been a welcome respite for me, not having to stand in line at the Safeway Pharmacy forever waiting for someone's problem to be fixed. Sometimes it's like watching the Keystone Cops over there, but I'm sure it's very complicated...

Peace, out for now.
B.

A couple of fun stats to lighten things up a bit...

From my Google Analytics account...
The blog has now been read by people in 31 countries.
Interestingly, the average time reading overall is about 2.5 minutes, but in Argentina and Yemen, the average time is 21+ minutes.
Yea boyeeee....a shout out to all my Homies in Yemen and Argentina. :-)

Top Five Countries:
1) USA (by far the largest)
2) UK
3) Canada
4) Australia
5) Greece

The only one that really surprised me out of that list was Greece. Germany came in 6th.
For all you techies out there: Blackberry beat Chrome 8:1; Firefox beat Safari 2:1 and IE beat Firefox 2.3:1
Peace,
B

Where we are at...and a bit of my philosophy of the day

Hi Everybody,
We have had several calls today, so obviously the word is spreading that we have contacted Hospice for help with Heidi and are now moving into another phase of care for her. Hospice is certainly known for "end of life" care and though we have reached out to them for Heidi's care, we don't necessarily feel like anything is imminent. Hospice cares for people when their "treatment options" have run out. With ALS, there never even really has been any treatment options, so I guess technically, we could have contacted them sooner. The reason we reached out to them this week is that H has been having some trouble with her breathing and were concerned with C02 build up in her bloodstream, especially in the am. I personally don't know what to do to manage that and the in-home care that Hospice provides really has helped to ease my mind with how I can make sure that H is comfortable and not suffering mentally or physically. They delivered an oxygen compressor today and though I have yet to convince H to use it, I'm comforted for its presence if we were to need it.

Nobody can really say how much time we have left with H, or anyone else for that matter. She could outlive me, or anyone reading this blog. All I know is that we can live every day that we have on this planet and do our best to take care of each other as best we can. We can strive to do the right thing and try to take actions that we would hope that others would take for us.

We can try to look at ourselves through the eyes of our parents and our children and hope that we would see a vision of reflection or emulation that brings positive feelings of pride or aspiration and above all Love.

We can try to look at ourselves through the eyes of our friends and hope to see bravery, unwavering loyalty and strength of character and the love of the family you choose for yourselves.

We can try to look at ourselves through the eyes of strangers and see hope, charity, generosity, kindness and of course, the common denominator, Love.

If we can live our lives in a way that these things would be reflected in they eyes of those that look upon us, we would all be great indeed and the world would be a place with much more of what we all really want.

Good night my friends.
B.

Ah...the Internet...

News flash...one of my other buddies pointed out to me that Regina Brett is NOT, I repeat NOT 90. Apparently, someone decided that her wisdom would have more cred if she was depicted as a 90 year old. She's a much more spring chickenish 53, and yet...I still find her words of wisdom very wisdomish (wisdomy, wisdomful, wisdomliscious, etc.)
Here's a link to her explanation of not being 90.
I guess you can't believe everything you read in an email or on the web. Now, I guess I won't send my bank account information to that nice man in Somalia that wants to give me 10% of his family's fortune to help him send it over to America. LOL
http://www.cleveland.com/brett/blog/index.ssf/2009/06/lifes_lessons_speed_up_on_inte.html
Enjoy!
B.

Wisdom from Cleveland...

This was sent to me by a buddy of mine saying the only 7% of people would forward it along. Well, i'm not forwarding, it, but since most people I would forward it to read this blog, and a lot more that I don't even know read it, I thought I'd post it here. I really like and agree with these little tidbits of wisdom. Many of these ideas get me through the day....every day.
Enjoy!

Written By Regina Brett, 90 years old, of The Plain Dealer, Cleveland , Ohio "
To celebrate growing older, I once wrote the 45 lessons life taught me. It is the most-requested column I've ever written." My odometer rolled over to 90 in August, so here is the column once more:
1. Life isn't fair, but it's still good.
2. When in doubt, just take the next small step.
3. Life is too short to waste time hating anyone.
4. Your job won't take care of you when you are sick. Your friends and parents will. Stay in touch.
5. Pay off your credit cards every month.
6. You don't have to win every argument. Agree to disagree.
7. Cry with someone. It's more healing than crying alone.
8. It's OK to get angry with God. He can take it.
9. Save for retirement starting with your first paycheck.
10. When it comes to chocolate, resistance is futile.
11. Make peace with your past so it won't screw up the present.
12. It's OK to let your children see you cry.
13. Don't compare your life to others. You have no idea what their journey is all about.
14. If a relationship has to be a secret, you shouldn't be in it.
15. Everything can change in the blink of an eye. But don't worry; God never blinks.
16. Take a deep breath. It calms the mind.
17. Get rid of anything that isn't useful, beautiful or joyful.
18. Whatever doesn't kill you really does make you stronger.
19. It's never too late to have a happy childhood. But the second one is up to you and no one else. 20. When it comes to going after what you love in life, don't take no for an answer.
21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.
22. Over prepare, then go with the flow.
23. Be eccentric now. Don't wait for old age to wear purple.
24. The most important sex organ is the brain.
25. No one is in charge of your happiness but you.
26. Frame every so-called disaster with these words 'In five years, will this matter?'
27. Always choose life.
28. Forgive everyone everything.
29. What other people think of you is none of your business.
30. Time heals almost everything. Give time time.
31. However good or bad a situation is, it will change.
32. Don't take yourself so seriously. No one else does.
33. Believe in miracles.
34. God loves you because of who God is, not because of anything you did or didn't do.
35. Don't audit life. Show up and make the most of it now.
36. Growing old beats the alternative -- dying young.
37. Your children get only one childhood.
38. All that truly matters in the end is that you loved.
39. Get outside every day. Miracles are waiting everywhere.
40. If we all threw our problems in a pile and saw everyone else's,we'd grab ours back.
41. Envy is a waste of time. You already have all you need.
42. The best is yet to come.
43. No matter how you feel, get up, dress up and show up.
44. Yield.
45. Life isn't tied with a bow, but it's still a gift."