Miracles are a difficult thing for me to talk about these days. I believe in miracles. I watched miracles happen when my kids were born and when I gave birth to someone else’s baby. I see people talking about praying for a miracle. I see people saying that their prayers are working so keep praying for whatever it is they are asking for. I don’t mean to diminish anyone’s need for a miracle. We all need miracles. There was a Christmas song that I kept hearing with the words, “there can be miracles if you believe.”
Well, we prayed for a miracle for our son. We had people praying all over the country that there would be a miraculous recovery for our 7 year old. He was not given a miracle. We were not given a miracle. Personally, I’m not mad at God, I don’t blame God and I don’t feel that this was God’s will because the God I serve is a God of love. But I have a constant, nagging question that I may never get the answer to. If there can be miracles, if you believe, why wasn’t our boy given a miracle? Did I not pray hard enough? Did I not believe enough? We wanted a miracle more than anything in this world but we didn’t get what we prayed for.
I will always wonder why our miracle was not granted. I try not to drive myself crazy about it but he deserved a miracle just like anyone else. This is a serious struggle for me. When you lose a child, you question everything about everything. You try to make sense out of something that makes no sense at all. You feel everything at such an intensity so feeling like my boy was not given a miracle, it’s a powerful intense feeling. Our grief therapist tells us to “screw the why’s” because you won’t get the answers to your questions this side of heaven. And I try to not obsess over it. It will be something I will find out when I am reunited with my precious boy. Until then, I will always wonder.
Having my child die was something that never crossed my mind as a real possibility. When my first born was brand new, you stare into their eyes and express your undying love for them and you think, “I don’t know what I would do with myself if you died” but if you are like me, you don’t really think it’s going to happen.Having to tell my 3 year old that his 7 year old brother died was almost as horrible as being told that there was nothing that could be done to save our 7 year old son’s life. Our 3 year old seemed to take the news as expected but we realized that he didn’t truly understand. Research says that children don’t really understand death until they are about 4.5 years old.Having to parent a child who needs you for pretty much everything and grieving simultaneously feels almost impossible in the beginning. My mind was distracted with feelings of sadness, questioning if I could have done more, shock, denial and anger that my son died. I couldn’t control when I cried and my 3 year old felt frustrated because he wasn’t always thinking about it like I was. He would throw me off guard by asking, out of nowhere, “mom, does brother still have bones?” It would throttle me to my core. Another time, we were playing play-doh and he asked me if he could make a tube like his brother had in his mouth at the hospital. It would stun me because I never knew how much he thought about the events or how much he understood. When those topics would come up, it would painfully remind me that he does remember the trauma.We try to think about the good times as much as we can. It has been painful to think that the child my 3 year old idolized and loved, is gone. When our 7 year old first died, we were obsessively looking at pictures and videos of him and our 3 year old felt left out. We quickly reminded him that while we are so sad that your big brother is gone, we are so glad you are still here and that made a huge impact on him. It was so very true too. The only way I can get through this life is one day at a time. When I think about any regrets I have, mostly over silly stuff, but mistakes nonetheless, it destroys me. When I focus on what my forever 7 year old son doesn’t get to do, it agonizes me. I’m very early on in my journey and I’m doing the only thing I know how and that’s to take the punches as they come. There are days that the waves of grief wipe me out and I go to how much I hate that my son will never have a girlfriend or go to college. It will always break my heart.I was reminded right after our son passed that he only ever knew love and security in his life and that gave me peace beyond measure. Some kids don’t know where their next meal is coming from or are abused and that was never the case in our precious boy’s 7 short years.
When our son died, we were inundated with support and I will always be beyond thankful. We had people cooking, cleaning, doing laundry, grocery shopping and anything we could imagine. We didn’t want to do anything and I truly don’t know how we could have. We were in so much shock and denial and the pain felt like someone was slicing my heart with a filet knife every second of the day. I truly don’t know how we would have eaten or had clean clothes if it weren’t for our friends. People brought us freezer meals to last us beyond when people were bringing fresh meals.We found out, through the loss of our precious son, that our community is huge and we would not be upright without them. What I also found out is that after the first month, most of that support lessens significantly because people’s lives move on. For me, the novacaine was starting to wear off after the first month and the reality was starting to sink In. I can’t say that I accepted our son’s death but I was realizing that he was not going to come walking down the hall and snuggle with me on the couch. Facing the reality that our friends lives didn’t stop when ours did was excruciating. Our lives are now defined by before and after. We were shaken to our core and brought to our knees when our beautiful, precious son left this world. We still can’t believe it and we don’t want to move forward because it feels so wrong. In our situation, we have a 3 year old whose world was throttled as well and we have chosen to keep living for him. None of us asked for this but we can’t imagine not providing the opportunity for him to still have a life. It is not easy to parent while grieving but these are the cards we’ve been dealt so we have to play them.
I was in total shock and denial for at least the first 6 weeks. I thought for sure that I would see him come down the hallway and say good morning mom. I shook my head in disbelief so much I’m surprised my head didn’t swivel off of my neck. I did not leave the house because there is no way I could face any kind of reality. I was so grateful to have so many people loving on us, bringing us meals and groceries, doing laundry, cleaning the house. I can’t even recall if I gave my 3 year old a bath during that time. My memory is so fuzzy and I couldn’t remember what I was going or who was coming over or when. I have no idea how our bills got paid. The pain was unbearable. It felt as though someone was cutting me with a filet knife every second of the day until I was so tired from crying that I collapsed into bed. Then I would wake up, look in the mirror and weep in agony that this was not in fact a nightmare I could wake up from.
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.