Sam and I have been attending a virtual grief support group for bereaved parents on Monday's every 2 weeks. I personally find it therapeutic and a safer place to say the thoughts aloud that I might sensor around others who (thankfully) haven't lost a child. There are just some things you cannot relate to or comprehend unless you have joined this group. At the end of the group this week we were all asked to use one word to describe where felt we were in the process. I have a difficult enough time trying to identify with one word as a description on a good day, and of course the minute the question was asked every single word left my internal dictionary. I started by saying that it really varies depending on the hour, but overall, the word I chose was confusion. I don't really feel that word does my emotions justice, but I cannot find a better word to explain the myriad of thoughts that consume me.
We spent her life on auto-pilot essentially, trying to find everything and anything to ease her symptoms and make her quality of life even just an ounce better. We didn't dwell on the situation, in fact, I feel like at times we even embraced it. My internal motto her entire life was that I didn't have to spend the time worrying about her death or what would happen after because one day it would happen and after that point, I would have all the time in the world to look back and relive it all. It was one hell of a ride, so many emotions and feelings along the way placed on this virtual back burner. Now here we are, a week shy of the 5 months marking of her death and that motto couldn't be unfolding more accurately. We hustled, we made it all work, we balanced it all like it was a profession and then it just stopped. Our 4 years 11 months and 23 days of making lemonade out of lemons was obliterated in an instant and now there is a calmness in our house that makes absolutely no sense.
I can't figure out how to even make sense of the situation much less any of my thoughts. Is there even a way to do that? Life for the rest of us continues to go on, but a hugely significant piece has permanently disappeared. There are no more fights, emails, or lengthy phone calls between insurance companies, doctors' offices, and pharmacies over medications and procedures that "aren't medically necessary". There are no more meetings, evaluations, service plans, or any amount of time needing to spend on those items. No more hours are being spent organizing supplies, ensuring the appropriate supplies are en route or approved. There are no more appointments, random hospitalizations, or even scheduled ones. No nurses are opening my garage and letting themselves into the house or sitting next to me in the car listening to all my thoughts and becoming part of our family. There are no daily medication times, no alarms signaling reminders, no extra precautions that are needing to be taken to go anywhere or do anything. We aren't limited to when or where we can go anywhere having to consider its location to a large children's hospital. There are no more sleepless nights due to the fears of seizures or pain disturbing her night. It all stopped, in an instant, and now there is just this deafening silence that is filled with constant replays of a life we no longer live leaving all the emotions once ignored to finally be addressed...and so there is...confusion.