I am always sad as we approach Valentine's Day. Six years ago my husband did something very uncharacteristic for him. He booked a suprise stay at a 5 star hotel for us for Feb 13th to celebrate Valentine's Day. He wanted to cheer me up. Instead of going to the hotel, we cancelled so we could take our son off the ventilator he had been on for 5 1/2 months. We got home from the hospital at about 11 p.m. the night before Valentine's Day and we just felt so empty. Six years later, life is easier. The pain stays in the background most of the time. But I still feel sad when I start to see all the hearts go up. People ask how we will celebrate the V day. Celebrate? I think not. We will go to Seth's grave.
Here is a memorial I wrote 4 years ago. There are not many posts on taking your child off of life support. I wanted others to know that I have been through it and still feel I made the very best decision I could for my son. I thought those who have been through this would relate.
Two years ago, we made a decision. Not a decision to let Seth live or let Seth die. A Higher One than us made that decision. We were able to make the decision of how Seth's last moments would be. Would they be moments of panic, fear, surrounded by strangers in the middle of the night? Was he to suffer more and more pic lines, Ivs, needles, blood draws, more being pinned down for 40 minutes every day so a respiritory tech could peal the tape from his face and administer more tape to hold the ventilator tube in place, higher ventilation settings that were shredding his lungs? No, we couldn't make the decision to save his life. We made the decision of how his last hours would be. The nurses gave him medications to keep him as comfortable as possible. We got our own room, Tim, Seth, and I. I held Seth in my arms as the doctor removed the ventilator tube. Seth opened his eyes and looked at me as if to say thank you. He had been trying to remove that tube for months, sometimes successfully. Those sucessful times had always been filled with panic for him and us. They were always followed by doctors and nurses running and the reinsertion of a tube, not a good experience for Seth. This time was different. This time it was peaceful. Seth opened his eyes, took about 5 breaths, then his breathing stopped and his eyes closed. I felt his spirit leave his body then, but his presence stayed with us. His heart continued to beat for 45 minutes. He fought to the very end, just as he had for the previous 5 1/2 months. For 5 months, my prayers had not been answered in the way that I had asked. Heavenly Father gave us those 5 1/2 months, but not a lifetime in this mortal existence. The last two weeks I had begun to ask for guidance. God answered those prayers. He gave me the wisdom, the strength, the courage, and the compassion to do the best thing I could do for my son. To end his suffering which no longer served any purpose and give him the most loving and peaceful passing he could have. I thank God that 2 years later I know that I did the right thing. I thank God that I had a husband that agreed and supported my decisions. I thank God for those 5 1/2 months of love, memories, photos, and videos. I thank God for Seth. I thank God for Seth's beautiful little brother who recently turned 1. I look forward to being reunited with Seth in the life to come.