Today is the 5th day of January in 2023. 3 years ago on January 5 2020 I was exhausted. Sam was out of town with our son in Florida to honor the one month marking from his dad dieing. I was parenting the other 4 essentially alone except for the amazing nurse Paige. Our oldest was graduating from the little howlers hockey program and she had her final games at the same rink the Coyotes played. Sonzee's nurse was there during the daytime hours, but at night (as usual) I was on "Sonzee duty".
On the 5th of January in 2020, it had been 4 years 9 months and a few weeks that I had been on "Sonzee duty". Watching your child seize multiple times a day is emotionally exhausting. Taking care of medical needs of a medically fragile 4 year old that was being fed through her intestines and a central line is exhausting. Parenting children (and 5 of them) is exhausting. Cooking and taking care of the house; it is all exhausting.
On January 24, 2020 hospice formally admitted Sonzee into their care. It was more of a moral support, access to periodic nursing visits and medication sort of deal. The actual care of her I maintained, like I had for her entire life so far. Watching your child die is exhausting on the emotional, mental, and physical levels. Trying to make arrangements on top of that is even more exhausting. Managing round the clock care and not wanting to spend too much time asleep is exhausting.
Despite all of the exhaustion I faced in my life, on February 3, 2020 a new form of exhaustion took over. One that I hope the majority of you reading this never have to try to understand. It isn't one that is fixable with caffeine or sleep. It isn't one that is fixable by sitting down, taking a rest, or any other assistive measure. Grief exhuaustion is a type of exhaustion that is difficult to even explain. It is soul sucking. It is physically and emotionally draining. It is a lingering cloud above you that is constantly raining around you and causes you to drown at the same time. It is a black hole that doesn't have the slightest light to even attempt to work your way out of. It is the worst possible combination of sadness and heaviness that there is, impossible to manage, and much like CDKL5 or any other rare disease, it is impossible to cure.
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