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