This hospital visit is a horrid marathon. Our little guy is still unresponsive, still seizing. We’re trying all sorts of medications, but we’re ‘just trying’ everything. There is nothing intentional about his current medical plan.
I am struggling. I am struggling so hard. On New Years I sat next to Sam, the love of my life, the father of my son and argued about my babies inevitable death. I was crying when the skyline out the hospital window exploded with fireworks, ringing in the New Year. I’ve been avoiding social media, because all the posts were about the happy 2016 highlights and the hopes for 2017. I don’t begrudge anyone their happiness, but it’s hard to watch from the sidelines. Everyone seems to be so carefree.
We are getting to the end of the tinkering that we can do. I feel so defeated. I’ve moved from extreme research into extreme escapism (I’ve read I don’t know how many books, all fiction, and I couldnt tell you what happened in any of them). I just, watching your baby get worse, from 30 second seizures to a minute, two minutes, is so rough. Yesterday Kai’s normal was five minutes. Today we had a 20 minute seizure.
Watching your baby thrash, watching his heart rate rocket and his O2 stats drop… each time I grasp for someone’s hand and try not to burst into tears. Each time I wonder if this is it. The long hours of waiting interpursed with the moments of intense fear while we wait for his seizure to self resolve… this is an unbelievable emotional marathon and I am struggling. Yesterday we were hopeful he might wake up, but he didn’t. Not really. Today he’s much worse than yesterday.
People keep offering help but I don’t have anything to ask for, I don’t have the emotional or mental capacity to know what help we need. My Dad and sister are here, which I’m so grateful for. Still, thank you everyone for the love and the messages.
I keep meaning to send messages to thank everyone who has donated to the research fund, but I don’t have the emotional capacity. Know that we’ve seen each donation come in and we’re so grateful. I got a message today from Emma (Joe’s Mum) cheering us on, which was so nice. I feel that we’re making a difference, placing trust in his future, and the future of other NKH kids.
Faith and Fortitude, hopefully tomorrow will be better x