I highly doubt you would be surprised when I say that the hardest thing I've ever experienced was losing my husband to cystic fibrosis. The whole situation in itself was beyond hard. It all was a heart shattering, life altering, mind numbing experience.
I can pinpoint multiple moments leading up to his death that were devastating to me and nearly impossible to overcome.
Even though each hurdle that we had to overcome was nearly equally as hard, the moment that I was told there was absolutely nothing more that they could do to save my husbands life is at the very top of the hardest thing I've ever faced. That we had finally reached the end of his journey. His body had given up. Here, let's go back. Let me share.
Things had been going poorly for awhile. Shortly before Thanksgiving I was told that he had the beginning stages of pneumonia once again. This time likely associated with the ventilator and aspirating the liquids and food that he was allowed to consume. I had been learning and understanding more and more about how dangerous each lunch infection was to Spencer. I knew that by getting yet another infection, his life was once again on the line. He had many ups and downs all within a few short days. There were times I wondered if he was getting better and was even told that the antibiotics were helping, and then I had times that I wondered if his lungs were going to get the best of him. I had hope. I really did have a lot of hope at that point, but in the back of my mind I was terrified.
As Thanksgiving came closer I noticed him declining hour by hour. Suctioning was increased. His lungs bled a few times. His heart rate spiked alarmingly high. His CO2 levels were quickly creeping up. He was sleeping a lot more, confused a lot more, and his depression was getting worse. We went back and forth with him being allowed to eat a limited diet, to a strict NPO diet. Each doctor told us something different.
When Thanksgiving finally came he had the worse day that I'd seen him have in a long time. He was hardly able to open his eyes. He wasn't hungry for anything at all and wasn't in the mood to visit with friends or family who came up. It was so frustrating for me because I really wanted to celebrate thanksgiving and really focus on what we were thankful for in the midst of all of our adversities. There had to be something, right? I think mostly I was just scared, because I knew that with each passing day I was getting closer to losing him. With each day that we had that was a little bit worse than the last, it was just another sign that his body was shutting down. By the end of the day I asked Spencer what he was thankful for and he responded with, "I'm just thankful to be alive." I don't think he could have said it any better.
Shortly after Thanksgiving we had a few more positive days, but honestly there were more set backs and more frustrations even with all of the things we celebrated. I continued to hold on to hope and I tried to share my hope with Spencer as often as I could. I looked through the clouds looming over our heads and saw the potential for a great and wonderful life after transplant, because dang it, we HAD to keep reaching for the goal of transplant.
December 3rd was our 6 month wedding anniversary and so I decided to celebrate it as if we had been married a year. I knew that our 1 year anniversary was not guaranteed at that point and I couldn't pass up our 6 month mark. We'd been through the toughest test of our vows possible and yet we were still holding on to each other with love and a bond stronger than one could ever imagine. I was disappointed that we didn't get the candle lit dinner on a card table by the side of his bed that I imagined, but I was beyond thankful that we could even say we made it 6 months. I was grateful I had the opportunity to buy him a card and share my love with him that day.
Just a couple of days after our mini celebration of our love and our vows I was faced with the hardest moment of my life. It's a moment I don't think I could ever forget because it's the moment that shattered my heart the most. It's was the one moment that completely broke me. It didn't just shatter my heart, but it briefly shattered my spirit as well.
After some persuasion from Spencer I decided to spend a few hours away from the hospital all to myself. While it was stressful for me to be away, it was a nice time for me to think and regather all of my thoughts. After a couple of hours of driving around a doing a little shopping I was quite excited to get back to him and spend time with him again.
He was laying there awake facing the door when I entered his room. I was greeted with a smile as I leaned down to kiss him. I put away a few things and proceeded to tell Spencer about my time away. I then asked him how his day went and how he was feeling. It didn't take long for him to calmly tell me that one of the pulmonary doctors came in to chat with him. I was hoping for some good news, but instead I sat there shocked, and was instantly angered.
A doctor had been in to talk with him while I was gone.
"She said I am too sick to get a transplant. My body is shutting down and we can't do anything anymore. We need to talk to hospice now. I'm dying."
With the weight of those words on my shoulders I couldn't breathe.
"What do you mean you can't get a transplant? She hasn't been following your case. She doesn't know what's going on. We were just told it's possible!! How could she tell you to stop fighting!"
I was so upset and angry, taking most of it out on Spencer for instantly believing her, though it wasn't at all his fault. I couldn't believe that she had come in to talk to him about this when I was gone. It just didn't seem fair. We were a team and we were in this together. At the time, I didn't believe she had the right to consult him alone. I felt incredibly left out. Because he was so depressed I knew that the meaning in her words were taken to heart. I just knew that if he had any ounce of hope left it was now gone. I knew in that moment I had just lost my husband despite the hope that I still had.
I was finally brought to tears. Unconsolable tears. In any normal circumstance I would have taken a moment to go outside gather my thoughts, call my mom, and work it out internally before I talked to Spence about it. But finally reaching the point of very seriously talking about my husbands own mortality coming within the next few weeks was certainly not a normal circumstance and didn't warrant my usual actions.
The next few moments were a blur. I couldn't speak and I couldn't think. All I could do is sob into Spencer's arms, my shoulders heaving with every breath. I finally gained a bit of composure and asked him what he thought about this. His answer is no longer a part of my memory and most of our conversation about it is long gone. But I remember telling him that there was still hope. That we would talk to his CF doctor and get to the bottom of this. Despite my own heart shattering, I still tried to remain positive for Spencer and begged him to hold on to any ounce of hope that he could.
Later that day the doctor that spoke with him was able to come back into Spence's room upon my request. Before I believed it I needed to hear it from her mouth. I needed to ask questions and understand where she was coming from.
Between each sentence she said I fired back a question, grasping at microscopic strings that could possibly be our answer to a few more months, or the chance of his condition improving. But with each phrase she spoke the more light my eyes lost. By the time she left the room all I could do is stare, and once again look into Spencer's eyes and cry. We cried together, desperate for peace, comfort, and clarity. No matter how much sense her words carried, there was still a part of me that couldn't truly believe what she said
When Spencer's CF doctor finally returned from his trip, he came in late one night just to speak to us about the odds and his opinions. He told us that he had been staying in touch with the team while he was gone. He understood Spencer had some complications with his heart among other things while he was away. All-in-all he told us that at that point it wasn't only his lungs to be concerned about but also his heart, liver, kidneys, and pancreas. Everything.
While he was speaking no questions were asked only blank stares and somber faces. This was it. This was the confirming moment for me that my husband was dying. There were no strings to grasp on to and the hope of him making it through was extinguished.
After the doctor left no tears were shed. Hardly any words were spoken for what seemed like hours. I sat there dazed and incredibly confused. How could I not have seen that coming? Where in the world did we go wrong? How could this have happened so suddenly? I was completely numb as I tried to process that the next steps were coming. That the focus of our journey was now changing. That soon I would no longer have my husband by my side. As I sat there holding Spencer's hand tears started to streak down my cheeks. I looked him in the eye. I studied his face, trying to hold on to every freckle, every line, and every memory. My eyes closed as a pool of water crept out of the corners. I opened them to see his eyes wet with tears. In that moment I would have given anything to take away his tears and the pain upon his face to see me broken.
"I'm not ready to lose you. I don't want you to die."
We sat there together in such a tender moment, those words continually coming out of my mouth, "I'm not ready for you to die."
After tears stopped and finally becoming numb I wanted to hold on to one more hope, though I knew there really wasn't any hope left. I bravely asked him what he was thinking.
"I agree with them. I've thought about this and prayed about this a lot the last few days. I'm dying, Nikki and I can't do this much longer."
With tears building back up in my eyes I nodded my head in response telling him I loved him with all of my heart. I kissed his soft lips and caressed his face, our fingers entwined so tightly as if to pause that moment and hold on to it forever. Our vulnerability allowing anyone to see exactly how we were feeling.
A piece of my heart and spirit was forever shattered that day. I lost a little bit of my light and my glow. Subsequent days were difficult to get through and that memorable day only marked the beginning of other nearly equally hard days.
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