Dear Bill,

4 years ago today you left us for heaven. I hope you knew how much we loved you and will always miss you.

Our family is good and we are going to have a 2nd great-grandchild. Little Ben is graduating from pre-school. We still work at creating his memories of you and he still talks about your mustache. I get to see all of the grandkids a lot and that is awesome. I try never to miss a basketball game because we went to all of them together.

I took a trip last summer and spent a couple months in Australia. I was shaky about that kind of trip without you, but I made it. There were so many things that I wish we could have seen together. I am going to try a trip alone again this summer to see Bill in Idaho and up to Glacier. (I am shaky about that one alone, too!).

Like the last time I posted something on the blog, I don't post often anymore. Just want others to know the love stays. The ache gets better, but the love stays.

Love you sweetheart. Always have, always will.

Joan

I Know That Touch

I know you are having a happy birthday today sweetheart because you are in Heaven.

I am not writing much on the blog anymore, because probably no one else ever sees it. Just in case they do, I want you and them to know that the love never goes away. I still love you, and I still miss you, but the despair has been replaced with a deep gratitude for the years I spent with you and the knowledge of where you are.

I felt your hand on my shoulder the other day. I know you are not here on earth, but I think God gives those of us still waiting here some signs that all is well and that we will be together again. Whatever the explanation, I know it was your hand on my shoulder. I know that touch.

I still miss you so much, but my life is good Bill. I am well and content and busy. I know that would make you happy to know. It is what we each wanted for each other.

Love you sweetheart! Always have, always will.

Joan

Two Years

Hello Sweetheart!

Today it is 2 years since you left for Heaven. Time goes so fast, and things are changing. We now have 2 beautiful new granddaughters-in-law. They are wonderful, and I love them both. In March Jordan and Noelle had a really beautiful baby girl, Kylie Elizabeth. Can you believe that your blushing bride is now a Great Grandmother??

We all still talk about you a lot and miss you so much. I no longer expect you to walk in the door any minute, but I sure still wish you would. Ben continues to talk about you like he sees you in the room. Maybe he does see you. Maybe that is a gift from God. (He tells us that you still have a moustache and wear a hat.) Ben doesn't remember you like the others do, so maybe God allows him to know you in another way.

It is almost Easter, and I have learned what a gift Easter is. Because of that gift I know that you are in Heaven and waiting for us. More than that I can’t ask for. I find it hard to be in Church during this season because I miss you, but also because I am so grateful for the knowledge that you are in Heaven, so I just sit there and let the tears roll, and I am filled with gratitude that you are in your home.

I love you Bill, always have, always will.

Joan

6 Months

I realized today it has been 6 months since our last post.  I remember in the days after dad died not being able to imagine giving up this blog because we would be that much more removed from when he was living and breathing and here with us.


I am missing him a lot today.  I have learned about grief that life truly does go on - and it should.  But I miss my dad every day and some days are worse than others.  In April we will reach the two year anniversary of his going home to Heaven.


If you are grieving someone, be patient with yourself.  It truly does take time.


I would encourage anyone dealing with ALS to reach out - to family, to friends, to your doctor, to your ALSA chapter.  If laundry help is what you need, ask!  If you need someone to run errands or just sit with you or your loved one, ask!  There is no shame in asking, that's for sure.  Often people want to help you very much, they just don't know what to do.


One more piece of advice.  If your loved one is losing his or her ability to speak or feels that might be on the horizon, make sure you record them.  Ask questions - and record their answers.  You will be very glad that you did.


Also, get involved in your local Walk to Defeat ALS or other event - The Packard Center, Brigance Brigade, Team Gleason and many others have events to fight this monster named ALS.

50th Anniversary

Dearest Bill,

If you were here with me today it would be our 50^th anniversary.   I am thankful  to our God for every moment I knew you.  Thank you for being my best friend, lover, confidant, and so many other good things including being a really special Dad to our children.

I am lonesome for you, and it still feels like you should be here…..like you have been gone for a long time but should be home soon.  I wait and almost expect the door to open and see you walk in.

 I can’t write enough to really express how much I miss you, but I know I will see you again.  Until I do...I love you Sweetheart, always have, always will.

Joan

Choices - No Right or Wrong

We haven't posted for a few months.  We had a fabulous trip to Washington DC.  We met with Sen. Amy Klobuchar from MN, Sen. Heidi Heitkamp from ND, Rep. Kristi Noem from SD as well as representatives from the offices of Senators Johnson and Thune from SD and from Rep. Tim Walz from MN.  We had the opportunity to see OJ Brigance as the keynote speaker as well as hear Steve Gleason speak.  Folks from all over spoke with representatives from their states.  What a wonderful opportunity to speak for my dad.  Many thanks to all in DC who welcomed us and heard our stories.

I have been seeing a lot of articles lately about warriors of this disease.  I greatly admire the way they are fighting this disease and some famous and not so famous make the heroic choice to go on a ventilator and a feeding tube.  Others, like my dad, make the heroic choice to live what is left of their time without these measures.  Is there a good choice?  Is there a right choice?  I don't think so. 

It is important to me that anyone reading this does not view my dad's choices as giving up.  He was simply accepting his fate and he made painful, difficult decisions that took serious balls.  Period.  I can only hope others don't have to make these decisions.  Yes indeed, the people who choose the path of medical intervention are brave.  That takes balls too.  Period.  Either decision is critical and must be very, very painful.

It is also very painful at times to support someone who does not choose medical interventions.  We asked our dad early on to fight for as long as he could, but to be honest with us when he couldn't fight it anymore.  And he was.

From the moment of diagnosis until he breathed his last breath, I wanted to scream PLEASE DON'T LEAVE ME.  But I didn't.  Because I loved him and I love him still and he did what was right for him.  His faith told him who was in control and God escorted him all the way home.

It is important that we do not pass judgment on the decisions that others make when they are in a place we cannot imagine.

Advoacy

One of the biggest ways my family has chosen as a way to deal with our grief is advocacy.  Fighting back against the disease that stole our dad, husband, grandpa and best friend.

In May 7-11 my mom, sister and I will be traveling to DC to attend the ALS Advocacy event on Capitol Hill.  One way you can help is to write letters to your congressional delegation.  You can find more information on www.alsa.org or e-mail me at tenhill@msn.com and I can send you the letter template. 

If you write a letter (handwritten or typed is fine) and want to send them with me, please e-mail me.  Be sure to reference Advocacy Day in your e-mail so I open it :)

If you are from a state other than MN, ND or SD, that's ok too.  Just be sure you address the letter to whomever represents you in DC.

Thank you so much!

Dancing With a Limp

It is a year today…and I still miss you so much Bill.  No matter how happy I am for you that you are in paradise, I still haven’t been able to not wish that we could have had those retirement years that we tried to claim.  We almost made it.  We almost rode off into the sunset didn’t we?  Today is very sad for me and all of us, but we are going out tonight to celebrate your life, not your death.

 Erin sent me a quote the other day that I really like:

“You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.”
― Anne Lamott

I think this is where I am at now sweetheart…..I can never get over losing you, but you will live forever in my heart, and no one can ever replace you.  Thank you for our years together -- I am a better person for having been with you.  I hope that you died knowing how very much I loved you, and how proud I was to be your wife. I pray that you knew that.

I love you Bill, always have, always will.

Joan

One Year Since We Spoke

Yesterday marked one year since the last time I talked with my dad.  I remember our last conversation.  The last things we said to each other were "Love you" and "Love you too."  I am lucky to know exactly how my last conversation with Dad went ... some people don't get that luxury.

Life does go on, but it is forever changed.  We all do fine in our day-to-day life "operations" because what other choice is there?  He is there and we are here and, for now, that's the way it is.  I do wish there was a way to make the world truly understand what I lost on 4/11/12, but there isn't.  Everyone would have to have my relationship with my dad to really "get it" and that isn't possible.

There is still an element of disbelief.  Don't get me wrong, I watched my father take his last breath.  My mind knows that he is gone, but there is a part of me that still expects to see him or hear his voice when I call.  Disbelief.  The anger stage is fading.  My dad would say, "You can't stay mad forever," and that is true.  It's exhausting to be angry and it doesn't change the situation.

One year later I do still cry some.  There is sometimes a claustrophobic feeling (that's the closest word I can find to describe it) when I want to talk to my dad and there is nothing I can do about it.  I can't pay enough money, scream loud enough, travel far enough, cry hard enough or beg long enough to change anything.  Claustrophobic is how that feels to me.

I read a quote in a magazine -- it was in a love letter, but still fitting -- that says, "I would swim six oceans just for the possibility to get a glimpse of you standing on the shore."  This is a hard week.  A snowy and icy week too, and that doesn't help.  Probably feeling more emotion this week than I expected to. 

Remembering those who I thought would show up and didn't, but especially remembering those who did show up .... in cards, letters, e-mails, at hospice, at the house, at the funeral home, at the church.  I never knew that one year later that would still mean so much to us.

But mostly, I am remembering my dad.  The dad who took me with him to horse sales and hay sales, to bale hay in ditches, to roof with him once or twice, to get a "new" stereo for my car at Nordstroms so I didn't have to listed to RUSH (ugh), through many (many!) miles of the Rockies, down so many horse trails, down the aisle to my groom, and home from the hospital with Ben --- and the dad who did his best to prepare us for his absence every single step of the way.

Miss you Dad - I love you and I am eternally proud to be your daughter.

A Random Thank You

Dear Dad,

Today, on this random day one year after hospice got involved, I just want to thank you. 

Thank you for not giving me a childhood I have to overcome.

For encouraging me, disciplining me and for having expectations for me.

Thank you for teasing me and laughing with me.

For showing me almost every scenic overlook in the Rockies, at least the CO and WY ones (500+ miles at a time).

Thanks for partnering with my mom for nearly 50 years and for showing us that, even when it's tough, sticking it out means leaving this world more in love than the day you married.

Were you a perfect father and husband?  Heck no - you made mistakes.  But you were a darn good one and we always knew we were loved.

I know you worked your tail off to provide for us and that things were lean sometimes.

I miss you every day and thank you for everything you gave to me and for me.

Love you eternally,

Erin

Purpose?

"Regardless of what we go through in life,

there is always purpose wrapped within the pain."

                                                        --O.J. Brigance, ALS warrior

     At this time, last year we were deep in the throes of Dad's ALS battle.  His respiratory failure was becoming apparent, the BiPAP was a struggle, and eating and swallowing were so difficult for him.  We were by now aware that the disease was progressing relentlessly, and that his time would not be the usual 3-5 year from diagnosis.  Dad knew this, and was doing his best to prepare us.

     I've been missing him a lot over the last few days, and to feel closer to him I've been listening to old country music on my drive home from work.  Waylon, Merle, even Donna Fargo.  It makes me cry, but that's ok.  I used to talk to him most days when I got off work, and we'd usually talk while I drove from Sioux Falls to Lennox.  I always think about him now during that time. It feels good to cry, and feels better to remember.

     Grieving is a process.  It's a day by day, even minute by minute, adjusting to losing the most influential person in my life.  Dad was just so BIG, for all of us.  We've lost the one person that would always have our backs more than anyone else in the world.  It's a huge hole. 

     We are all doing ok though, doing as expected.  We were raised to be strong and to carry on.  We are doing that.  Mom's heart is broken, but she is day by day getting through.  Like it or not, life goes on.  But it's changed me, changed us all.  Even at work, after all these years, dealing with death and dying is now a struggle.  It's still too raw, and I avoid it as best I can. 

     I struggle to see God's purpose in this.  Was it to wake the rest of us up, to shake up our faith?   I believe that God does have a plan.  I just don't see how Dad's illness and death benefits anyone or anything, yet I don't believe that our loving God would do it to punish. I don't get the purpose.  We just keep hanging on to our faith, and to eachother.  I don't see how anyone could survive this grief without believing. 

     I also pray that our Heavenly Father forgives and understands, that right now, I look forward to Heaven because I miss my earthly father. 

     I believe that He does.  

New Year

What's the worst thing that can happen,
If they say my time is through?
Can they take away the love,
Or the years I've shared with you?
What's the worst thing that can happen,
That's the worst that they can do . . .
Threaten me with Heaven, it's all they can do

I hear angels through the window pane, calling my name
Someday when they carve my name in stone, I won't be, I won't be alone
If by chance a miracle appears, I'll dry your tears

Hello Sweetheart!

The first time I heard these words to this Vince Gill song you were still with me, and it was about a year ago. I stll listen to this song a lot. I think it could have been written for us.

It is the first day of 2013 today Bill – my first New Year without you. They can’t take away the love, or the years I shared with you. 

 

I love you – always have, always will.

 

Joan

Blue Christmas

Hello Sweetheart,

It will soon be Christmas.  Last night Tyler, Erin and I went to St. Marks for a “Blue Christmas" service.  I cried of course.  I still cry, but not as often as I used to.  Most times I can sit through church without crying, but this service was meant for grief.   I left church feeling better, and that is good.  Pastor Lori mentioned ALS and talked about a lot of things -  where we suspect she may have been talking about you.

I wish you had been able to go to church there Bill – They are good folks, and you would have been comfortable.

 

I was remembering some of our Christmases during the years we knew each other.  You always loved Christmas, but said it was because I loved it so much.  ....We always said we were not going to give each other anything, but we almost always did anyway. So many memories ...more than most people get.  Remember the year with the deer tracks in the driveway after we went on our Santa search?

I am having trouble writing more Bill -  I love you  and I miss you so much ... Christmas was always special for us and even when we did not have much, it was so special.

Love you sweetheart – always have, always will.

Christmas Memories

Christmas was a wonderful time for the Haagenson kids growing up.  There wasn't always a lot of money, but Mom and Dad always made sure we had a good Christmas.  We had all the usual traditions with stockings, food, a tree (or 3) with our little ornaments and the same nativity set every year.

When I was a kid, every year my dad would bring home the crew cab truck.  That was a big deal then when you didn't see them all over the place.  Then we would get in the truck and they would take me around looking for Rudolph's nose up in the sky.  We would come home to all kinds of presents.  One year, we even came home to find deer tracks down the driveway.  What a memory!

Was it all perfection?  Probably not.  I am sure there were years my folks argued about money or things didn't go just as they had planned, but I'll bet not one of the three of us can remember knowing that.

Merry Christmas in heaven, Dad.  It is just not the same hear without you.  Just know that ALS did not destroy who you were in my eyes.  If anything, it made you even bigger!  We will do our best this year, because the little kids need to have a great Christmas too!  That would be important to you.

Love, love, love you eternally!



Resources

If you found our blog and are a PALS, caregiver, family member or friend, we are glad you are here!  We are far from experts.  We just know how this walk feels and how it went for our dad and husband.  We would like to share some excellent resources for information and ways to get involved.  I am sure there are many, many more.  Here are just a few:

Your Local ALSA Chapter . . . Here in SD, our closest chapter office is in the Twin Cities and they head up the MN, ND and SD Chapter. . . http://webmn.alsa.org.  They not only give money to research, but also have great access to loan pools for equipment as well as staff that provide emotional support.

Your local Muscular Dystrophy Association.  They have a section dedicated to fighting ALS!

Team Gleason www.teamgleason.org.

Brigance Brigade www.brigancebrigade.org.

The Packard Center at Johns Hopkins www.alscenter.org.

The Caroline Rober Blog . . . My family found their blog very helpful. www.carolinerober.com.

Grief and Gratitude

"Grief startles us and blows holes in our lives."  Laurie Wallin

I have been planning all week to write something.  But what?  I was talking to Mom and Lynette on Saturday about writing on Facebook how great 2010 was as we went into 2011.  Then, in May 2011 my Grandma Hob died and 6 weeks later my dad was diagnosed with Lou Gehrig's Disease.  Want your blood to run cold?  Hear that diagnosis for someone you love.  Then, in April 2012 my dad died.  He died.  My dad died.  MY dad died.  My dad DIED.  You can't plan for that even when you know it's coming.

Anyway, I was saying that 2011 and 2012 really let me down.  But we got to talking about how there are still things to be thankful for.  That we should still have sincere gratitude for the blessings in our lives.  On my drive to work each day this week I have been thinking of all the things for which I am thankful. 

"How do we choose to allow the holes (in our hearts, brought on by grief) to become seeing-through-to-God places?"  Ann Voskamp

2012 has not let me down.  Here's why:

I have a nice, warm home with a full pantry of food and a soft bed to sleep in.  I have a washer and dryer and dishwasher.  I have a nice neighborhood for my kids to live in.  I have a great, loving little Boston Terrier named Maggie.  I have a job I like, working for and with people I like.  I have good benefits, a nice wage and a great retirement plan.  I drive a good vehicle.  I am healthy and even though I need to lose weight, that means I never, ever have to go hungry.

I have a husband who adores me and two amazing, smart, funny, beautiful little boys who are the reason I was put on this earth.

I have a family that has my back no matter what.  Good people came before us and good people will follow.  Nothing fancy about us -- but it's a legacy to be proud of.

We found a church and a pastor that just feel right for our family.

I have friends who showed up at times throughout this year (rummage sale, ALS walk, or just a random pizza) when I needed them most -- even if I didn't know how much I needed them.

We gained a new family member this year in my nephew's wife, Noelle.  She is the perfect fit for us and we are proud to claim her as one of our own.  We get another new family member next May because this year Jared and Abby got engaged.  My nephews have chosen beautiful, good, solid people to spend their lives with.

We took a beautiful memorial trip for my dad in June -- the whole family.  Tyler, the kids and I took a great little trip to Duluth in September.

Tyler, who has worked on the road a lot over the last 5 years, has been in SF since my dad got sick.  God must've known I needed him here and that is a blessing I never, ever, ever take for granted.

My husband has a family that I wish we got to spend more time with.

I am a USA-born girl, who loves this country and the beautiful freedoms it provides me.

The things I have been blessed with are too numerable to mention.

But something bad happened this year, too.  That's just a fact.  And it has changed me forever.  I think a person just has to make room for grief.  Dad won't be present for Thanksgiving this year.  The first one in my 36 Thanksgivings.  I think pretending there isn't an underlying sadness for each of us would be a mistake.  So we will acknowledge his absence.  Maybe tell some funny stories.  Maybe cry a little.

I had a great dad and that is something I will always, always be thankful for.

Information

When Dad was diagnosed with ALS, we were desperate to find information about what was ahead.  Sure, we knew the inevitable end.  That it is a fatal disease, with progressive deterioration, no definite cause, no medications to help, and no cure.  I am a nurse, and yet had pretty much zero experience with ALS.  I remember one patient in all my years.  His speech was significantly affected, and he would come in to the clinic with questions written out for me.  I would sit there with D, going through his cardiac meds and he would cry and drool.  And I would cry, because I felt so bad for the poor guy.  His mind was clear, speech was gone, and I wondered why would anyone have to go through that.  Then my father was diagnosed. 

We combed the internet looking for answers.  I knew where the ALS road ended, but needed to know the how's and most importantly, what would the end be like.  Would he suffer?  How bad would it get?  How long would it take?  Dad's neurologist was great, and he liked her.  But we didn't get alot of specifics, like an estimate of how long.  Oh sure, we got the textbook 3-5 years from diagnosis, but no real info.  I know that it's hard for a physician to predict, that every case is different, etc.  But I was really wanting answers. 

Part of our reason for starting this blog was to help others looking for information. 

In Dad's case, things progressed quickly.  He had involvement of his shoulder girdle/upper chest muscles.  The chest muscles and diaphragm are involved in breathing, and the weakness affected his breathing fairly quickly.  His pulmonary function testing the day of diagnosis was nearly normal.  Yet even then, he got short of breath when we were at the Omaha zoo last July.  The fatigue was immediate and quickly progressed.  He changed so fast, that we even wondered if he had something else, like an undiagnosed cancer or something along with the ALS.  We could tell that it wouldn't be the usual 3-5 year timeframe. 

He was unwavering in his decisions to not accept tube feedings or a ventilator.  We respected that, and even admired the courage that those decisions took.  For comfort, he tried BiPAP, but was miserable.  He decided that he did not want to live that way, and stopped using the BiPAP after a very short time.  It may have given him a little bit more time, yet it really didn't seem to be giving him quality. 

Accepting hospice was a big step for Dad, and for all of us.  We are so glad that we did.  They took care of bringing the meds, talking to the doctor about issues and med adjustments.  Most importantly, it relieved some of the pressure for us, of trying to see as a nurse would.  It was amazing to me that any objectivity and nursing judgment just evaporated.  I just could not see clearly.  Even at the end, when he was laying there with agonal breathing, I couldnt see how close the end was.  He wasn't a patient.  He was Dad. 

My main question was would he suffer?  Would he fight at the end, would the breathing be so bad that he would be air hungry and miserable?   The answer to that is yes....but.   He definitely suffered,  for nine months with decreasing muscle function and loss of independence.  He had a profound malaise, and incredible weakness.  His breathing was tough, and looking back, I believe that it was worse than he ever let on.  He didn't/couldn't eat, and I believe that it was a conscious decision.  Later, he couldn't swallow.  He lost his speech, and the last several days wrote us short little notes.  His life as he knew it changed, and he suffered. 

But at the end, it was peaceful.  Over the last several days, he became quieter, weaker and less responsive.  He received morphine continuously those last couple of days.  I believe that he was kept comfortable.  He stopped responding at all.  He was surrounded by family that loved him.  We talked to him, and sat with him, and held his hands. 

And on a sunny April morning, he quietly passed into God's Kingdom while surrounded by his wife, son, daughters and oldest grandson.  It was peaceful, and even beautiful. 

So to any one involved in the ALS fight, the end can be comfortable and peaceful. 

The courage that Bill Haagenson showed from the moment of diagnosis, was amazing.  He took it like a man, head high and brave....why am I not surprised?  Love you Dad.  Still so proud of you.

Lynette 

Pride & Love

Hello Sweetheart!

I find myself awake early this morning and thinking about you. You are the only other person who would know exactly what I am feeling this morning. Pride is a good emotion too, and doesn’t always go before a fall. Today, pride and love are what I feel about our family and our friends after everyone came together to do the ALS Walk and a huge rummage sale. It is harder for me to write about it than it would be to tell you about it...I know you would know how I feel.

Remember how frustrated you used to get about Erin and her shyness with network marketing? You would always say that if she would just let herself – she would be very successful in networking. Well hon, you should have seen her go with this. She did everything from TV to radio to social networking etc. She was awesome, and kept pulling her slightly sluggish Mom and the rest of us along in her enthusiasm.

She was definitely the leader, but everyone came through in some way. We were all there yesterday for the walk and then for the rummage. There was a ton of stuff to be lifted, marked and moved multiple times, and our family and friends did it!  We raised a lot of money, and even our Wyoming kids were involved as virtual walkers.

We had new blue Team Sweet William shirts, and while we were not the biggest team at the walk, we were surely one of the most enthusiastic. (And most loving) The littler kids looked so cute in their over sized blue shirts with the cowboy on the back.

There was only one person missing in all of this. I thought about pushing an empty wheelchair yesterday, but that would have been just too hard....Maybe someday I will understand the why of you being gone. Maybe it is so that we will all stand together to fight this vicious disease...I don’t’ know. I just know I miss you.

 
Love you Sweetheart – Always have, always will...

A Big Week

Dear Dad,

It's a big week this week.  One that I would have talked to you about.  Oh how I miss you.  I think it's a good thing we don't realize how much we'll miss people before they are gone, because we'd act like crazy people and never leave each other alone!

So this week . . .

First, I am going to be on the radio on Tuesday morning.  The folks at 97.3 are being kind enough to interview me to discuss the Walk to Defeat ALS and our Rummage to Defeat ALS.  I am nervous.  I am not a shy person, but a lot of people listen to that station!  Hope I don't sound dumb.  You would say, "Don't underestimate yourself."

Then we have the walk and rummage on Saturday.  We could use a good turn out, so if you could put in a good word I would appreciate it.

We reached the 6 month mark since your death on the 11th.  I can't believe it's been 6 months.  You died on a Wednesday morning.  Monday of that week was the last time we had a conversation.  I went home for a little while.  I said, "I'll be back after while you little dickens.  Love you."  (I called you that sometimes over the years --- I don't know why)  You grinned and said, "Ok, love you too."  While I was gone they started the morphine drip ... I wish I had known ... and you drifted off to a peaceful sleep which is good because your breathing was labored. 

(To the ALS families reading this, what hospice said would happen did .... they said when his breathing got too labored ... when it was to the point of severe panic ... they would IV sedate him and he would sleep.  That's exactly what happened.  It was truly very peaceful.  Those hospice people know what they're doing.)

Over that last night/day I talked to you a lot.  I hope you heard me.  I am so glad that in the months leading up to your death we were all so honest with each other.  I remember early in your diagnosis you said to me, "Do we really have to pretend we don't know where this is going?"  I loved that about you.  Just hit the nail on the head.  Just call a spade a spade. 

I am doing my best to fight this disease.  I promised you that I would go after it as hard as I could.  I hope you are proud & that I am honoring your memory properly.  You are missed.

On a lighter note, we have been thinking about things you used to say.  Here's one, "Well, that will go over like a pregnant pole vaulter."  You were a funny man.

With love, admiration & respect always,

Erin

So Happy for You - So Sad for Me!

Good morning sweetie,

 

Grief is a funny thing – you never know when it will hit you again.  Some days I wake up and think I am fine, but other days it hits again and the loneliness is overwhelming.  Sometimes that loneliness occurs when I am with a group of people, or even with our family......that is why it is so strange.  Today is one of those days.

 

The days are beautiful right now. Crisp autumn mornings that turn into a beautiful warm day.  I have become a project person and I have done some things to our house to make it nicer and more comfortable.  I put a fireplace in the basement.  Sorry hon, because it cost some money, but I thought it would be better and I would enjoy it more than going on a trip right now.  A trip would just make me more lonely, where the house now makes me feel cozy and safe.  I have pictures of you hanging around – and they make me feel good, too.

 

Erin arranged for an interview with KELO that will air soon.  It is about the ALS walk coming up and why our family is so passionate about raising money for ALS. I am super proud of the kids for what they are doing and picking this way to deal with their grief.

 

I wish we could go riding in the Hills today.....

 

I may drive out to the Hills yet this fall.  It might make me feel closer to you.  I miss you so much sweetheart.  I am so happy for you, but still so sad for me.  I love you – always have, always will.