Father's Guilt

Many nights I sat by her bed. Nothing to break the silence but the sound of the machines that were keeping her alive, and the nurses outside the ICU doors.

When Crystal was born, she let us know that it was going to be a rough journey.  She wasn't breathing, specialist rushed in and sectioned the Meconium out of her lungs and worked feverishly to get her breathing.

The next 18 months was a struggle, she was always sick, coughing up mucus, unable to keep food down and extremely under weight.  We had what seemed like weekly visits to the emergency room, only to be given a cough suppressant. Her pediatric nurse practioner could never give a good diagnosis. She wouldn't refer her downtown to a specialist because the USAF clinic was low on funds and had put the message out to only send severe cases out until the budget was approved.

Crystal was 18 months, when we took her to a pediatrician downtown. One look at her and he said "I think she has Cystic Fibrosis. A sweat test confirmed it.

Throughout her young life she was hospitalized at least annually. In high school she met the love of her life. They married after graduation and before he left for USAF basic training. I encouraged to join so that she could continue getting medical coverage.

After a couple of years of marriage, I recall her telling me that she wanted to be a mom. This was against doctors orders. She was stable and on a medical plan that kept her as healthy as she could be. However, she wanted to be a mom like all of her friends.

18 months later, my grandson was born, 4 months premature. He spent the first two months of his life in NICU. Crystal, on the other hand was drained. Her pregnancy, labor and delivery had drained her tiny body.

Her lungs got weaker and weaker. During one of her visits we had a long talk. She started crying and said she wouldn't live long enough to see her son go to school. My heart hit the floor. I tried to reassure her that a cure was close and she would get better.  Unfortunately, just the opposite happened. I was at work when I got the call that she was back in the hospital. At first I wasn't concerned, she's always in the hospital.  "It's not like before," was the response, "you need to get here."

I was on a plane the next morning traveling from Dayton Ohio to Santa Barbara CA. When I arrived she was was having a transfusion.  Her kidneys had stopped working. They took me up to see her; however, she was so worn out that she couldn't communicate too well.

I spent every day by her side, not leaving until late at night and coming back early the next morning. One evening Crystal was sitting up in bed, talking and laughing.like she was completely healed. A sense of peace fell over me. She was getting better, I thought. I looked around and didn't see the nurses expressing the same feelings.  I later learned that some terminal patients have a few hours of elation before the end.

My wife and son joined me and spent the days there with. One night after getting back to my hotel, I received a phone call from the ICU. Crystal was struggling and scared. She called out for me. I was back by her side 15 mins later.

The next morning the doctor called me over. He said that the machines were the only thing keeping her alive. He wanted to talk about end-of-life life procedures.  I told him that her husband would be in soon.

When Aaron arrived, he was briefed. When Crystal was coherent enough, the doctor came in and hardest discussion I've ever had proceeded. 

I held Crystal's hand, and while she acknowledged that she understood  what was happening, I could see the tears forming, then one by one roll down her cheeks. She was accepting that this was the end. 

The whole time I was with her I felt guilty for all the times I wasn't.  As a child. My military career had me deployed eight to ten months a year. In her adult life she married and moved to the opposite side of the country.  It wasn't as easy to get to her.

There would be times she'd be hospitalized and wanting me to be with her but I couldn't make it out. Seems I always had an excuse. I did call and talk to her, but it's not the same.

The last time I got the call I treated it like all the rest. I would be told that she was in bad condition, but they said that every time. Unfortunately, this time she was. When I received the second call in as many days, I knew something was wrong and flew out the next morning. She died six days later.

The guilt was (and still is) overwhelming. Why did I put my life, work and everything else before my child. I should have been there for her. I should have made time.  After she was disconnected from the machines vthat were keeping alive, it was only a matter of hours.

I blamed myself for everything.  I asked God to make me suffer like her. It wasn't fair that her life was gone and I was still here.

Then Covid hit... After 77 days in the hospital, most in ICU, my lungs were in bad shape.  I was experiencing extreme difficulty trying to breathe. I thought of her often.  I can't Change the past, but I'm trying to do a better job now.