This is the part of the story when things started changing very rapidly. It was Friday and it was my night to stay at the hospital. My mom was there with me and everyone else had left so we started to get settled in the waiting room. There was just no way to sleep in his room because there were so many machines and I jumped at every beep. If I was sleeping in the waiting room and they needed me, I could be there in the blink of an eye. Starting at about 11pm, the nurses called me every 30 minutes to keep me updated because things were changing. The pressure in his brain was going up and they were having difficulty controlling it with the medication. At first, they took him back to adjust the drain because they thought it may have had a kink in it. Then they decided to replace the drain, thinking that might be the issue. By about 3 am, and they kept calling, I asked them if I needed to be concerned and they said yes. So I went back to his room. The doctor sat me down at a computer to show me the most recent scan of his brain. She showed me so I would get a better picture of what we were facing and that is when she told me that his entire brain was damaged and there was nothing more they could do. The noises that came out of my body were sounds I’ve certainly never made and definitely never heard in my life. I could not believe that my precious baby boy was going to die. I had not really considered it as a possibility. I asked the doctor to call my husband and explain it to him because there was no way I could. We called the rest of the family and they all arrived at the hospital by 4 am. The doctors adjusted everything so that I could lay by him which I was so grateful for. He had so many tubes and machines hooked up that we could barely even give him a kiss.
I laid next to him and stared at him for 4 hours. I wanted to memorize his beautiful face. I have always loved his profile and I used to stare at his ultrasound picture and then was so amazed at how he looked exactly like it when he was born. You can’t really put into words the thoughts you have when you stare at your child, realizing you are never going to see them again. I couldn’t even see the machines, I only saw him. They wanted to remove various pieces of equipment and I really just wanted them to leave him alone because he had been messed with so much.
Once we realized that the end was eminent, we knew we had to tell our 3 year old. We recruited the help of the child life specialists because I had no freaken clue how to tell him that his brother was dying. They took a picture of him in his hospital bed in order to show our 3 year old so he could make the choice if he wanted to see him or not. We were not going to force him but wanted to give him the opportunity because you don’t get any do-overs in these situations. We explained to him that his body got sick and didn’t work anymore so he didn’t need his legs and arms anymore because he was going to die. Telling your 3 year old that his 7 year old brother was going to die was almost as horrific as realizing that our 7 year old was going to die. He seemed to comprehend it as well as could be expected. When we showed him the picture of him in his room, he wanted to go see him. When we entered the room, you could physically see the wheels turning in his little head. He pointed at all of the machines asking what they were. He wanted to see his hands and feet because at his age, he is so concrete. We let him touch him and do whatever he felt comfortable doing. He cried 2 different times and they were sad cries and it was gut-wrenching. We were given the opportunity to do memorial projects like painting his hand so we could have a hand print to take home with us. He wanted to do it so he chose the colors and said he wanted to also paint a heart on his brothers hand.
Pastors from our church came to pray with us but they were not aware that everything changed. I will never forget the looks on their faces when I told them that he was not going to survive. They came in and prayed with our family and as this was going on, our 3 year old said he wanted to paint a picture of heaven for his brother. He said that we shouldn’t be sad because he will always be in our hearts and it is so true. The innocence of children can be so refreshing when we lose sight of the truth.
Our sweet baby boy took his last breath at 3:30pm on July 20, 2019 and we will never be the same.