When Time Stood Still

This picture was taken one year ago today as Don and I lay in his hospital bed waiting to go home via an ambulance transport. It was about the happiest I’d seen him in a long time. His eyes literally twinkled and danced, and he smiled all day long. There was a lightness in our hearts that had been absent since Don had been admitted to the hospital, and unlike the day before, this day was full of hope.

The previous day had been an emotional rollercoaster. Before removing Don’s breathing tube, the doctor told the family that he had “minutes to possibly hours (to live)” – the air in the room became heavy with shock and sorrow, and the silence was punctuated by sobs of disbelief. It felt like someone had sucked all the air out of the room and left us choking on the potential outcome.
I remember going back to his room where he was resting comfortably. I sat in my chair, and in a state of utter disbelief that was riffled with fear and anxiety, I thought to myself – he has to live…I don’t have a plan B. I don’t have anything to do or place to be – unless it’s with him. I just sat there feeling lost – terrified that my life with him was hours from ending.

I hadn’t planned on that or even entertained the idea that he could die that day. I thought we had another month left with him, or a week or two at the least. Those minutes before they came in to take the tube out and transition him to the NIV, were a living hell! I felt like I was floating somewhere between reality and outer space, and the pressure to cope with all of this made me feel like I was being stretched beyond my capabilities. I needed to be there for Don, for myself, our families – and still have something left to function with if he didn’t make it. I felt like I could pass out from the all the stress but knew that wasn’t an option.

We needed to get the family back to see him and so
began the process of what we feared would be goodbye – but without hinting to Don about how bad the situation currently was. We were living a nightmare. How do you say goodbye to someone without saying goodbye? I don’t know, but we did it.

I watched all our kids come and be with him. I watched his grandkids hold his hand and tell him they loved him. I watched his mother and brothers and their wives come in, and my mom as well. It was every agonizing feeling you are probably imagining just by reading this – and worse.

The Dr. and nurses came in and as they pulled the tube and went to place the mask on, I leaned in and quickly stole a kiss, and then I held my breath. Seconds ticked by and turned into minutes – and he was doing well. His numbers were up and stayed elevated. After a few minutes we knew he was holding his own. And I could breathe again.

I don’t remember who went and got the family, but in shifts they all came back in his room – but this time there were tears of relief and nervous laughter. We went from utter despair to exhilaration in about an hour. It was unbelievably taxing on all of our hearts and we were all exhausted.

Don looked great – not just good but truly happy and the most alive I’d seen him in weeks. And my heart was happy – still scared – but happy.

Monday the arrangements were made to get us home and we had some time to ourselves as we waited for all the paperwork to be taken care of and that’s when I took this picture.

It became the last real picture we ever took.

Those last two days were amazing. He watched me anywhere I moved in the room. Hanna even commented to him that he was just smiling and watching his cute little wife – to which he gave a huge smile and a thumbs up.

I don’t remember what time we finally got to leave the hospital, but as we were walking out of the ICU, his nurses, as well as the charge nurse (whom I’d not meet), came over and gave me huge hugs. They told me I was a great wife and that he was truly blessed to have someone not only love and care for him as I did, but who fiercely advocated on his behalf. And then Sylvia (one of our favorite nurses) said, “You all are an amazing couple! Your love for each other is not something we see very often, and my best wishes are with you both”. As she released me, I took a few steps forward, stopped and turned to look back – mouthed thank you and waved. I turned back around – and as I began to walk towards the stretcher he was being transported out on – the tears began to flow. All the fear and worry of this not happening began pushing their way out. The realization that we were actually leaving the hospital was occurring. We’d done it. We’d made it past this daunting hurdle and we were actually on our way home. I just kept thinking that we would finally be able to stretch out in our bed, and that I could actually sleep next to him again. To lie in his arms and rest. And with those thoughts circling in my head, we were loaded into the ambulance and headed home.

I held Don’s hand as I told him what landmarks we were passing (so he’d know how close to home we were) and as we pulled up to the house, with tear filled eyes and in a breaking voice – just above a whisper – I looked at him and said, “We’re home”…..he smiled and a few tears rolled down his cheek. I squeezed his hand and we smiled at each other. And while neither of us said it – I knew we had both feared that this moment would never actually occur, and because of that, there was an enormous amount of gratitude being shared between us. Gratitude that we were still together. Gratitude for the love that grew stronger with each adversity we faced, and gratitude that we were home.

I don’t know if Don knew or sensed what was coming – but I certainly didn’t.

In just a little over 30 hours Don would once again hear the words – you are home – but this time they were spoken by his Lord and Savior, and as he entered Heaven I entered into widowhood for the second time.

While I prepare for tomorrow, for the one year anniversary of his passing, I do so with a torn and sorrowful heart. I’m glad he’s free from ALS, but I miss him with every ounce of my being.

Today – I’m trying to hold the image of his smile in my head. To remember how his hand felt in mine – and to quietly reflect on all we shared in our short but well lived journey together. Yet, at the same
time, my heart feels heavy, my bones are achy and the longing for life to be like it was before ALS is still strong within me – even 364 days later.



7 thoughts on “When Time Stood Still

  1. Do keep it going! You are an amazing woman with a natural talent. So perfect that you decided to write your feelings in an enjoyable read. It will become your future, and we, your friends and family, support you in this new endeavor!


  2. I feel your grief and pain. My husband was diagnosed with ALS on Oct 14, 2015, at the age of 44. He passed on February 10, 2017 and I, like you, was his advocate, protector, and caregiver. I struggle daily and I miss our laughing and “one upping” each other. The ALS Association Tennessee Chapter asked to share our story on Facebook and I felt sharing our story allowed people some insight into the struggle, especially emotionally, of ALS and how it is an all encompassing disease. You give me strength reading your and Don’s story, thank you.


    1. Valerie, I’m so terribly sorry for your great loss. We also shared our story via the STL ALS association and ALS WorldWide. We were honored to be able to help others in any way we could, and continuing to tell our story and (other aspects of life) is one way I hope to continue to shed light on real life grief, and be a voice to the hurting and to those who love, and want to help them. Thank you for taking time to post a comment and may you be held close as you walk your first year of ‘firsts’.


  3. This is amazingly wonderful, Berkley. Thank you for the willingness to share your story with the world. Hugs and love to you!


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