I miss Ed so very, very much

It's odd to be here without Ed.  I love him so much.  How does this ever happen?  Go away? 

I try so hard not to be selfish.  Ed's in a better place.  Free from ALS.   Now that I have this distance from the life we had this past year, tucked away in that little room in the nursing home, I'm realizing how difficult it must've been for Ed.   How strong Ed was for never giving up.  Never complaining. 

At the time, I knew it was tough.  I think, though, I was too close to the day to day challenges to really see what Ed endured.  Laying there, motionless, day after day.  Waking up in the middle of the night, alone, scared.  Bored out of his mind.  Never hugged, we didn't sleep next to each other, other than range of motion and physical therapy, rarely touched. 

When I was there, I would kiss him, run my hands through his hair, hold his hands, rub his legs and his feet.  It's those little moments, though... the things we take for granted, that he didn't get.  Stuck in that bed, he couldn't even see who came in to the room because he couldn't move his head. 

Many times, he asked me to stop "messing with him."  I think he felt like a bug under a microscope.  I was always looking for some new change, was he ok, what could I do for him?  He just wanted to be my husband.  Not the dying husband. 

I replay everything over and over.  What could I have done different?  More?  In those last days, was he scared?  Did he know how much I love him? 

I know, I know this is bad to do.  What's done is done.  I can't change anything.  And, I think, in my heart, I do know I was a good wife.  A good caregiver. 

Life is so different.  I can't believe this week is already a month since he died.  It feels like it just happened.  But it also feels like a year ago.  The need I have to touch him again.  To kiss him.  Hear his voice, his laugh. 

Death happens every day.  I know I'm not special with these feelings. It doesn't minimize my grief and it shouldn't.  But it gives me perspective.  As much as I want the world to stop and let me grieve, let me figure things out, life keeps moving forward. 

One hour, one day at a time.  One foot in front of the other.  Sometimes I have to sit, have a little chat with Ed - I wonder how he's doing, where he is.  But then I get up and move along.

Some nights, my heart squeezes so hard.  It hurts.  It takes my breathe away how scared, how lonely I feel without Ed.  We only had 5 years together.  How do people feel after being married 30, 40 years? 

I have this picture of Ed, up in heaven.  He and his son, Ryan are walking together.  Talking about everything and nothing.  It's a bright, sunny day.  I imagine him looking in to a window where he can see me, see his son Luther, his grandkids.  He's smiling because he knows we'll be ok.

I try so hard to hold on to Ed.  To his love.  Keeping me afloat.  If I get too sad, I let myself cry a little and then remember how lucky I was to have him at all.  I remember he doesn't have ALS anymore. 

I just miss him so much.

3 weeks

I want to share Ed's eulogy.  I worked on it for a year.  Last October, we thought he had days to live.  I started thinking about what I'd say about him - what I wanted people to know about Ed at that time.  Pretty much every night for this past year, as I drove home from the nursing home, I said this aloud.  I don't know why it gave me comfort to do it.   I guess it made me feel like I was honoring him, made me feel closer to him on that drive home?

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I want to thank everyone for coming, it means a lot to me.  I know it means a lot to Ed – wherever he is – I imagine he’s fishing.  Hanging out with his parents, his Uncle Wendell and his son Ryan.  It gave Ed a lot of comfort to know he’d be reunited with his family.  It gives me comfort to know he’s free from ALS.

I’d like to take a moment to thank my family for their unconditional love and support over the last almost 4 years.   A big thank you to my mom and dad.  They’ve been so gracious and generous from day one when a southern stranger blew in to town and moved in with their daughter

I want to thank my friends who have been so kind and understanding, who accepted Ed openly.  I have an amazing support system.  You’ll hear me say this a lot – I am so blessed. 

I also want to thank my new family from down south who have accepted me warmly in to the Cutchins clan.  His sisters, Kay and Linda couldn’t be here today but I know they are thinking of us and I am holding them close in my heart.  Ed’s brother TJ and his son Luther are here with us and I’m so glad you are.  I love you all so much.

I just want to take a few minutes to share the Ed I know with you.  Ed was a pretty quiet guy.  But underneath lurked a generous and gentle heart, a wicked sense of humor once you got to know him, a loving husband and a super smart and accomplished man.

When I first met Ed, he would tell me every single day he was having a fantastic day.  I wish I could say that in the right southern accent.  At first, I couldn’t believe anyone was that happy.  But Ed really was. 

Ed’s glass wasn’t just half full, his glass overflowed. He was so happy to share what he had with the people he loved.  They say opposites attract and in our case that was really true.  I tend to be a glass half empty girl.  Together, we were a really, really good team.  I’m really really going to miss him.

Every time my ever optimistic husband got his head stuck in the clouds, I’d bring him back to earth and together we’d face the day.   And every time I got sad and stuck, he’d tell me he loved me and it would be ok.  In some magical, Ed-like fashion, everything – except this ALS monster – would turn out all right.

ALS is a wicked disease.  None of us could do anything but stand at the sideline and watch as ALS robbed Ed of so much.   Never once though, not once did ALS take away Ed’s faith or his positive attitude.  He was amazing through all of this.  Never once, even in the darkest days and  and the most uncomfortable, scary nights, did he complain or feel sorry for himself.  

I learned so much from Ed through all of this.  Through his example, I learned there is strength in being quiet and gentle. 

He taught me to choose my words carefully – as much as words can make you feel loved or lift you up, they can hurt and once you say something out loud, you cannot take it back. 

He showed me how to be more grateful for the things I do have in my life rather than wishing for something different

I learned how powerful having a positive attitude really is.  This time with Ed taught me it’s about perspective.  That darn glass looks exactly the same.   It’s how I choose to see it.  Half full always feels better than empty.

Ed opened up my world to seeing things in a new way.  He opened up my heart to accepting more love and support.  The greatest gift Ed gave me was his unconditional love.  That’s the love from someone who chooses to be with you and never asks you to change.

Together, we learned a lot.  Every cliché in the book comes true during something like this. 

We realized quickly life is so short.  Ed helped me to stop worrying about things out of our control. 

Ed and I had 5 short years together, almost 4 of those years filled with ALS.  We decided we had no time to sweat the small stuff! 

Tell the people you love just how much you love them.  Every day.  It’s something we took for granted until we realized our time was limited.  What I wouldn’t give to have one more day to tell Ed how much he means to me. 

We learned to find a little happy in every day.  And, if it was just too hard to find happy, we worked to find a place of peace and to find that peace in faith and love.

We learned to be present in the moment.  I didn’t really understand this before.  We’d turn off the tv or computer,  put down the phone, sometimes we didn’t talk.  I’d hold his hand.  It felt so nice to be connected.

The best lesson we learned is – even during the most complicated, chaotic, uncertain times – we learned that life is pretty simple when it is filled with love, family, friends, faith.

I carry these lessons in my heart, just as I carry Ed’s love.

As we go through the day today, as sad as it feels, I want us all to remember how privileged we were to have Ed in our lives, how grateful we are for having love in our lives.  I want us all to find a little happy or atleast a place of peace.   I want us all to remember that indeed, today is a fantastic day.

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 So.  It's been 3 weeks since Ed died.  3 weeks today.  It's 11:30 pm - I think we - me, Jenn, mom and dad - were all sitting in the nursing home, waiting for the funeral home to get there and take Ed away.

It was a peaceful time.  He died around 9:45, maybe a little earlier.  I replay that day over and over in my head.  Actually, the last couple of days before he died.

It was so weird - the last couple days, he had trouble talking.  He'd croak out a few words, water, I love you, tired.  I could tell he was trying to talk at times, but couldn't get out the words.

But Wednesday, when the hospice nurse came in and asked how he was doing, Ed looked up at him and said, clear as a bell, "I've think I've run out of gas."   The nurse and I looked at each other, shocked.  We had a little cry but tried to stay positive for Ed.

He wasn't awake much the rest of the day.  Maybe an hour or two.  I held his hand, told him I loved him.  Told him it was ok to go.  I'd be ok, he did such a good job of taking care of me.  Now it was his turn to be taken care of. 

I carry so much guilt.  So much uncertainty.  Did I do enough?  I know.  I know I did.  I can't help but ask the questions, late at night or in the quiet moments.  I realize this is the natural course of grieving. 

I talk to Ed all the time.  Driving.  When I'm out walking Mia.  Did he feel loved?  Was he scared those last days?  Is he ok now?   Does he know how much I miss him?  How much I loved him?  Still love him?

The thing with Ed, the thing that made me fall so much in love with Ed is his big love for me.  He made me feel safe.  I'd been single for a long time before meeting Ed and the one thing he gave me that I never really felt before was this feeling of security.

Before Ed, I always equated love with that butterfly, rollercoaster feeling.   Now, I realize love is feeling protected, feeling like a team, feeling secure.  Ed gave that to me.  Even when he was so sick, this last year, it was the two of us in that little room, in the nursing home, us against the world.

Now, I feel -- a little scared.  Scared because I lost my best cheerleader.  My best friend.  I haven't had Ed's arms around me in 3 years.  I used to get a little awkward about hugs.  Now, I love getting hugs.  I lost our physical relationship 3 years ago.  It's more than that -- it's having him near.  Having that love.  His love.

I know.  I know there are so many things that soothe my heart when I feel this sad.  He's free of ALS.  We had more time than a lot of folks do with ALS.  He could talk right up to the end.  We had so many amazing adventures.  I got that big love.

Ed just ran out of gas.  It was his time.

I just miss him so very, very much.