When everything happened with N and we were in the hospital, I buried my head in the sand when it came to the outside world and my responsibilities as a member of society. All of it fell to the wayside. For all I knew, aliens had invaded and the Earth had engaged in World War III. It just simply didn’t matter to me.
The hospital ward became my reality. I was there with N an average of twenty-two hours a day. I spent every night with him except the night he received his heart, and that was because there was just too much going on and I would have been far more harm than help. The only time I left was when my parents forced me to take a walk outside or join them for dinner at our local apartment. I just couldn’t bring myself to leave him. What if something happened while I was away? I’d never forgive myself for not being with him. I wanted to go back in time to those previous seven weeks and all the times I had asked my husband to take care of N because I was too tired or too mentally worn down. I wanted to go back to those moments and just hold him forever. To pause time. To make everything else stop so I could just be with him again. Hold him again. Be his mom again.
My husband, his parents, and my parents took care of me when I couldn’t even take care of myself. For that, I can never repay them. They put their lives on hold and allowed me to tune everything else out and focus entirely on N and my own grieving process. Because even though he was still with us, I was grieving for what was happening to him. I couldn’t hold him. I couldn’t nurse him. I could hardly comfort him when tears rolled down his cheeks. There were so many tubes and wires separating us. Standing right next to him, I feel lightyears away. All I wanted was to be a normal mom, but my first experience with motherhood was ripped from me. Not only was my baby suffering, but I was powerless to stop his suffering, and I was unable to do the only things that felt natural to me.
One of the other transplant nurses also said something that struck me, and that is that we grieve for the loss of the life that we planned for our child. When we find out we’re going to be parents, we plan our children’s lives out for them in our mind’s eye. We see them playing a certain sport, or participating in a particular club. We see them making straight As in school and surpassing our own personal successes. And yet here I am, being told by our doctors and nurses that they cannot guarantee me what kind of mental capacity N will have IF he survives, let alone recovers. I was mourning the loss of that potential life. In that darkness, that’s all I could do. My husband desperately tried to help me focus on the future. Sometimes it helped, sometimes it just reminded me of what I still might not have. But N never quit. He powered through every challenge he met like a prize-fighting champion. I will forever marvel at his strength, for I had been so weak.
If you find yourself lost in this darkness, I encourage you to find a healthy distraction. I became obsessed with playing board games with my family. It was something we could do in his room without leaving him all alone, and it was something we could do together. It kept my mind occupied so that I didn’t focus on the negatives. It also helped me stay connected with a small piece of the outside world, as board games are something we did together before everything happened. It helped me to stay in the present and not completely lose myself.