When we were in the NICU there were a few days when Asher's bilirubin levels were continuously rising. While jaundice was the least of our concerns at that point, we knew that if his levels hit a certain mark, Asher would be put back in his incubator and would be put on touch restriction while he underwent phototherapy. One morning during rounds, his team was discussing the upward trending numbers and how his latest test showed that he was just a half point under the magic threshold that would necessitate treatment. Our attending physician asked the resident what his course of treatment would be and he said something along the lines of "if I were a betting man, by looking at his last few days, he is absolutely going to be over the limit tomorrow so we should just start treatment today." The attending responded by agreeing, but not wanting to act prematurely because the last thing she wanted was to take away the only thing I was able to do for him in the hospital, hold him. She said "I'm usually a betting man too, but this time I'm betting on Asher - let's give him one more day." The next morning his levels dropped three points and we never had to talk about phototherapy or touch restriction again.
There were so many moments during our time in the NICU that should have stuck with me, but this one takes the cake. First, because it became the inspiration for naming this blog, but more importantly because it was in that moment that I realized I would spend the rest of my life fighting for people to look at my son as a person, a fighter, someone who would show us just how strong he was and not simply a set of numbers.
This morning I met with Asher's neurologist and after over a month of being seizure free and a month of celebrating the beautiful EEG we saw in June, the spasms are back and fiercer than ever. My heart knew it, but my head couldn't comprehend it...until the team walked in this morning and let me know that I have the great privilege of choosing the next step, of making the decision between shitty and shittier. Treatment that will help us remain status quo knowing that will mean he will not get better or treatment that might help, but has so many terrifying side effects.
The last seizure-free month has been a dream. Asher has made strides in development that I never allowed my heart to hope for and that brought me to (happy) tears daily. We have seen abundant smiles and joy on his face when he recognizes someone's voice. Asher has shown us that he prefers (real) baby food to bottles and that he can use his 2 brand new teeth to munch on cookies (for a little bit). He still tires easily, but he is starting to use both his hands and legs for meaningful movement and has made great progress (for him) in therapy. This last seizure-free month has shown me just how much Asher still wants to show us and just how much I need to keep betting on Asher.
And so tomorrow, we will take the all-to-familiar trip back to the neurosciences wing of Children's Hospital and we will start a course of daily injections. Injections that are so powerful they will necessitate round the clock care to make sure Asher's little heart can handle the strain, but will hopefully be strong enough to finally knock these seizures out of his system. I've been dreading this day since the moment Asher was diagnosed with IS and I was able to understand what that really meant. I knew this treatment was on the horizon as our last step, but I was hopeful we had just a little more time before we got there.
It's 10:15 p.m. on a Monday evening and I am sitting on my couch with my sweet 10 month old (in 2 days) curled up on my lap. He's been asleep for well over an hour, but I can't bring myself to move him to his room, just like I couldn't bring myself to let him fall asleep anywhere but in my arms today. There is a half packed hospital bag sitting inches from me that I need to be filling, there is laundry to be folded, garbage to be taken out, dishes to be put away, but every time I go to move, I find myself needing just a little more time, to simply sit here and watch my tiny miracle sleep soundly one last time before our lives are upturned yet again tomorrow.
Tomorrow, we continue our journey, Asher continues his fight and we keep on keeping on as we will always be betting on Asher.