Come on over

Since I am now me and not technically we and Tracy has an amazing blog with many followers I am choosing to keep him alive through his blog site instead of mine.
The goal of my blog was to discuss and share the practical sides of caregiving for ALSers but the truth is I was so busy DOING that I didn't get around to SHARING.

So-I am going to muck up Tracy's blog that he loved so dearly in hopes that it makes him crazy enough on the other side to come back and continue to write:)

Thanks for following along.
Hope this can help.
Me

Valentine's Day

I am truly happy for all you who will enjoy 

Valentine's Day to the fullest.

I have been asked in many ways if being around happy couples makes me sadder.

On the contrary-

Happy people make me happy.  I have no interest in sitting with sad people who have lost what I have or more, trying to one up each other.  I do however sympathize and empathize greatly with those in the trenches of forced change and I do so enjoy the freedom of the "insiders chat" we can freely share.  Knowing people really understand does give some stability to the roller coaster I am experiencing.

I am not pretending life is a bed of roses without thorns.

There is nothing you can say or do to make me SADDER so quit worrying.  Say what is on your mind.  Ask whatever questions you want.  Give that advice you dared not -"too soon".

Bringing Tracy's name up makes me know you miss him too and in some ways it keeps him alive.  But also realize- don't feel OBLIGATED to wallow in that remembering if it makes YOU sad because then you will avoid talking to me and that WILL make me sad.

Clearly I am no expert on much of anything and as many have pointed out over the last few years I am not necessarily middle of the road on my views.  As a matter of fact many can't even SEE my view (point) standing right next to me.  I'm fine with that.

I write this because I hope that it can help anyone in anyway- including myself and it's my gift to Tracy because he Sooooo LOVED to pour his heart out to you all.

This holiday is another in the line of firsts without- and again it has taken me by surprise that this Hallmark Holiday is actually tougher than any so far, even Tracy's birthday.  Most people just give a card and a kiss or go to dinner, maybe some flowers.  It's not a month long international celebration with movie stars promoting their wares.  

What it is for me, is a time to reflect on those nearest and dearest to me and why they are.  THIS has been a very difficult holiday for me because there are no distractions.  Nothing else to focus on BUT that reality.  

We were lucky enough to have a crazy love affair that started in high school and surely will never end. 

But even in my sadness, automatically I think of all of you who showed your love in so many amazing ways to both of us.  That really does help.  And I thank you all and I love you all for being so giving and sharing with that very special gift.

~So Really~

Happy Valentine's Day

New Year

I can't quite get myself to say HAPPY with New Year yet.

I am so thankful to all of you who have helped me through this journey and for those of you who continue to support me in so many amazing ways.

I have spent time with the grand boys and my kids.  I have started a very part time job that is an absolute miracle in fit and focus.  I have been given time and freedom and security to heal.  I have been included into the local community with open arms.

But this is all the PollyAmy stuff.

The easy stuff.

 It's not the gritty truths that Tracy was so fond of sharing and you all were so brave in receiving.

I really had expected to  continue Tracy's blog with a bold diligence and consistency.  It's not that I have forgotten.  It's that it's a lot harder than I thought to just pour out what I am thinking or feeling without regard to others.  It's not others opinions of my writing that is my issue.  It's the thought that I may hurt or upset others.  Our truths are not pleasant ones in many cases.  What is the balance that justifies this risk?

There are so many really unpleasant facts of our journey that I haven't shared because that is not my nature.  But if I could save anyone from any of the unnecessary suffering we went through I feel it's worth it and yet....I find myself not writing.

I get called or emailed from a variety of people with health issues and I have no problem sharing exuberantly the "truths" of our situation with them directly because I know there is no emotional shrapnel to have to consider. 

I still get correspondence from people who share how helpful and inspiring Tracy's writings were and are to them.   THIS is why I am interested in continuing to put myself in the trenches instead of leaving ALS far behind.  In my search to find the TRUTH about ALS and healing I had so many helpful people who gave us information, guidance, encouragement and hope.  This allowed us to LIVE each day instead of counting the days until we died.  THIS is Soooo important for the world to understand.

So many people have encouraged me to write our story.

They have provided beautiful journals and have provided information and connections.

If I can't write a blog post how would I ever get the courage to write a book?

People keep telling me to focus on myself.  Don't worry about others at this point in my life they say.

Helping others IS helping myself I think loudly to myself.  This feels healing to me. 

So much to consider.

The journey continues.

Thanks for listening.