Still here

The other night Christopher was looking off. His eyes were fixed and he was on his side. My heart rate picked up and I felt adrenaline rush through my body. He rolled to his back and snapped back to his smiley self. He was fine. But I wasn’t. 

I was back in the hospital – a year ago. I was standing outside the MRI room with Christopher unresponsive on the bed. The nurses were silent and hesitant. They had already given him 3 doses of rescue meds but the medications weren’t calming his brain.  He needed an MRI but he wouldn’t stop desatting. His oxygen saturation would plummet under 40 and he would start seizing again. I asked the nurse how long we needed, and she said “five minutes.” I looked at them and said “we can do this.” The nurses looked at each other and one said “it’s not normally the mom giving us a pep talk.” Finally we were able to hook him up to oxygen with one nurse in the room along with him to get the images we needed. We had to check for a stroke because he wasn’t moving the right side of his body. Thankfully no bleeds showed, but during the short MRI he wouldn’t stop seizing and desatting. The neurologist had followed us from his inpatient room to the MRI, and while Christopher was in the MRI he looked over to his resident and said, “we can’t lose his airway.” This moment keeps replaying in my mind. I knew Christopher was in bad shape. I knew this was unlike any other illness we’ve seen. He was rushed to the ICU and all seemed to calm a bit once he was with a new team. He was still unresponsive, requiring oxygen and breathing very strangely, pulling from one side of his chest to the other. Wasn’t long before the EEG leads were on him and the resident came into his room and told me “he’s still seizing and we need his brain to stop. We have to intubate him.” And this is where I looked at her and said “I’m sorry….” as tears streamed down my face and I couldn’t keep it together any longer. For the previous 5 hours I was trying to stay strong. I was giving it my all to stay strong for Christopher. But I finally broke down and cried, I was terrified. 

These memories all came flooding back. And my body remembered each one of them. Every “different” look he gives me brings me back to those moments. Some days more often than others. Moments of fear and tremendous worry. Thankfully weeks later, he recovered from that terrible virus (still unknown the cause) and we were back at home. We kept him out of school because we knew his body couldn’t take another hit so soon, and with cold and flu season in full swing we weren’t ready to take a risk. I wasn’t ready. A month later, in walks covid-19. Not only was I still processing what had happened and never truly let myself feel all the feelings associated with his hospitalization, I was hyper focused on keeping him healthy. And a year later, that’s what I’m still doing. I can’t believe it’s been a year since he attended school. A year at home. A year of isolation. It hasn’t been an easy year for anyone. Especially a rough year for those of us trying to keep our loved ones healthy. An extremely trying year for the vulnerable; the families of the vulnerable. To be honest, a year where I’ve never felt so lonely and forgotten. Not really me though, him. He’s been forgotten. He’s been told he should hide away so the rest of the world can move on. Keep him home, and we can live our lives. Keep him home, and our kids can go back to school. Keep him home, and our kids can play sports. Well…we’ve been doing our part. But he deserves so much more.

We’re still here. Still in this for the long haul. Although my body can still feel those moments in the ICU, I never want to be there again. As the world slowly moves forward, we’re still here. Unmoving. Isolated. Still in the place we were a year ago. Because as we all know, we’re in the same storm but definitely not in the same boats. We’re holding onto hope that the light at the end of the tunnel is getting brighter and our rough seas are subsiding. Thankful for those who are also doing their part. Thankful for those who are remembering him. Remembering the vulnerable, throwing us a life preserver here and there. 😉 And grateful he’s healthy. And that’s enough right now.