Sad Anniversary

[Barbie]

Today is the first anniversary of Lonny's death. It seems much longer and so much shorter all at the same time for me.

What a sad day. I am filled with memories of that day and the pain and sorrow. My heart is hurting and I feel so very fragile. The last few months leading up to September 30, 2015 were so HARD and when I think back to what we went through and what a living hell it was for our family... I just can’t understand why. But I am also filled with bittersweet happiness that his suffering ended after 9 long years and I truly believe he is in a better place running and laughing again.

Because of Lonny I have had a beautiful life. I have 4 amazing children that I love with all my heart and soul. I have his extended family that I love like my own. I have felt deep love and joy and excruciating sorrow. I learned about humility from him in his final years, and selflessness, and real struggle. I learned how strong I am and what the human spirit can endure.

This year has been so strange...it took me 8 months just to remember him as he was before ALS. And oh I miss that man. I wish so much that I could spend just one more day with that man. That man loved me with all my imperfections. And I loved him. I thought we would grow old together, but of course that was not to be.

The only thing I can say is that life is a precious gift and you are not promised even one more hour. Don’t take this gift for granted—live like you mean it every single day. Tell someone you love them. Give them a hug. Open up your heart. Forgive yourself. Take a chance. Say yes. Don’t hold back. These are things we all need. This is how I am trying to live.

This forum kept me sane and helped me be the best wife and caregiver and PALS I could be, every day. Honestly, I think of you guys as my closest and dearest friends. I think of you daily still. Thank god for this forum even though I don't understand why we all had to be here. never will I guess. xxxxxxxxxoooooooo

 

[Nikki J]

Thank you Barbie. Beautifully said. Sending you a huge hug

 

[gooseberry]

Barbie I so get the seems like forever and yesterday thinking. It is that way for us. Julien is big on taking out albums and looking at pre als pictures. He so loved his dad and has grieved and is still grieving....actually we both are.

Like you, we had many plans for the future...it doesnt mean it has to change drastically. Lonny will always be in your heart. Julien and have decided to continue traveling. It is something we loved doing as a family. We talk about steve a lot and what he would have loved, not liked etc.

I am very hopeful for the future. I feel like we have been to hell and back so upward and onward. Enjoy your time, see your kids, and hold your happy memories close.

 

[azgirl]

So beautiful, Barbie.
Cherish those happy memories
Thanks for sharing.

 

[scaredwifetx]

So touching Barbie. You are a true warrior amd have helped us all so much. Steve uses the neck pillow you sent every night so I think of you and Lonnie every day.

Your words are bittersweet and made me cry but they were also inspirational and I needed it today. Big hugs to you Barbie.

 

[affected]

I am stunned it has been a year Barbie.

I remember being so concerned in that last 6 months as you were burning out and knew the end was truly approaching.

It is cruel that ALS can take over our memories and definition of the person. It does take time for the real memories of the real person to shine back in and I'm so glad you have that and see the true Lonny again even if it makes you want him back all the more.

You were one of the first people to grab my hand when Chris was diagnosed, and take hold of me in a way that made me feel I would not just collapse in a total heap. I will always be so thankful that people like you were here in my time of need.

 

[Jhill]

Thank you for coming back to share your feelings.
Your love shines through.

Hugs to you,
Joan

 

[Nuts]

Barbie, has it really been a year? I'm so glad that you've come back to share this anniversary with us. Your final months were excruciatingly difficult, and yet there was never any doubt about your love. I am so glad that your memories of the man Lonnie was have returned. I wonder sometimes if that won't make it harder for me. When I think of who we were together, I miss it so much. I love us now, of course, but I treasure those memories.

Big hugs, Warrior Princess.
Becky

 

[Green Queen]

I'm so glad Barbie you can remember Lonny without ALS.

Love and hugs to you and your kids.

 

[Annie's Phil]

Barbie, you've captured so well what so many of us former cals think and feel in the aftermath of the ordeal we shared with the one we loved the most. A line in a Roger Whittaker song is so poignant for me: "And someday when we look back in time, we'll see the hill we had to climb."

Grace and peace to you.

 

[texastc]

I know Barbie, I'm 2 weeks behind you. I, too, remember where we were this time last year...vividly. I too want the Tracy back...the one before ALS.

Peace to you.

tc

 

[FamilialALS?]

Wow I too cannot believe it has been a year. I remember your pained posts in the months leading up and I remember the many emotions you posted about after.

My mom transitioned to palliative care at the same time that Lonnie passed. Your posts help to prepare me for what was to come. My mom passed December 19. When your loved one has ALS you continually grieve losses while they are still here.

It doesn't seem possible by the time that they actually pass away that there could be more to grieve. But there is so much more... Like you and the other past CALS that post here after their PALS is gone, we then grieve once again that whole person they were before.

Your posts and others help me realize that's normal and I'm not the only one. Thank you for letting us know how you are doing. I too have a better appreciation for time and the people that I choose to spend that time with.

 

[Barbie]

the morning after the anniversary I woke up and thought ,"year 2, day 1. I have lived this date without him." sigh...

it was a emotional and draining day for me=teary eyed all morning until my daughter showed up at noon. I dried up and we packed all day as I am trying to sell my house. then she left and I laid down for a nap and a good cry but my son showed up to spend the night so I dried up again and took him to dinner.

called my sister in law who was with us when he died...so good to talk to her about everything.

I actually went back and read my old posts...wow. that made me quite emotional and shaky and even though there was many details I didn't have the energy to write, the posts helped me remember the awfulness of it all and gave me comfort that he needed to pass, that I had done my best, and it was all out of our hands anyway. I am glad that I wrote as much as I did. I always found comfort when others had written in detail at the end...first because they were my friends and I cared but also because I think it helps prepare the next generation of pals and cals. I so wish that last bit I wrote was not necessary...I just don't understand why we all suffer with this.

now in year two, I feel even more lost and alone, but stronger and more resolute as well! I am moving forward. I am going to survive and thrive. I am going to live and never forget. I am going to miss him forever.

hugs to all of uu

 

[lgelb]

It is very true, Barbie, that we are not promised even one hour. I wish you peace and strength as you look back on this anniversary -- the joy and pain that are often inseparable.

Best,
Laurie

 

[affected]

You remain an incredible warrior princess Barbie xx

Year 2 isn't always easier than year 1, but it's not so intense in many ways. Having survived the first year, you will go upwards, even if it's not a straight line, and you still have family here. I'm so glad your family were around you as you went through that first year marking, it's a really tough one!

I know that your honest words not only helped you at the time, but help others every single day as they are there for any CALS coming here to access.