Day 9 of Hospice
Today was Shabbat. It was the last Shabbat you would spend with us. The day was a horrible, horrible, horrible day. You had the very last seizure of your life today, and you received the nasal rescue medication I argued too many times about getting with the insurance companies and CVS. Today the hospice team came out a few times to try and help us keep you comfortable. It was a day filled with many tears. We finally managed to get you comfortable with round the clock medications. That was a tiring and awful task, but one that I felt made your life come full circle. I had always thought at this moment it would be time to move you to Ryan House so I could be just mom, but, in the end, I wanted to just do what I had done your entire life. It made sense, but I couldn't do it alone. Auntie A would end up staying up with me all night to help.
Today would be the last day that we would see your eyes open. Today would start this horrific battle within my mind. On the one hand, I wanted you to be at peace and comfortable and I would continuously tell you that it was okay to leave, but on the other, I didn't want you leaving. It is difficult to admit that some of my thoughts led more towards wishing this process would simply speed up. It was excruciating because at this point I wanted it all over, but I didn't want you dying. There was no way to have one without the other. Nothing could ever be worse. I watched you seize and suffer for close to 5 years, and yet watching you slip deeper into death over the next 48 hours will be something that haunts me for the rest of my life.
We were told you would likely die soon, but there was no way to know when, and it was completely up to you. We were told children can be very particular about how everything pans out, some children want their parents by their side, and some capitalize on the one moment escape from the room. I forced myself to leave you to shower, I tried to make sure you knew it was ok, but I know aba was not really on board. Our continued conflicting unspoken opinions I am sure made it all the more challenging for you. I know deep down you knew that neither of us would ever really be ready for you to leave us, but you also probably knew that we were ready for you to stop suffering. In true Sonzee fashion, you would make sure it was all done the way you wanted. In true CDKL5 fashion, my type-A personality wouldn't matter. I wouldn't be privy to any insider information. I wouldn't have any upper hand in how any of this was going to pan out. I would simply just have to sit back and continue to be a bystander of your life, unable to truly help you.