It wasn't until Sonzee that I gave death much thought. Even the thought I gave was nothing more than simply the potential that it might occur. However, at some point early on, within the first year of her life, when people asked me if there was a life expectancy, I would matter of factly reply there is little information specifically, but we know we will most likely be burying our child. Maybe some would cringe if they knew I said that? Maybe some would even argue that fact? Maybe they could have been right? But, maybe I said because it was simply a protective mechanism my brain set in place to attempt to cushion the looming possibility? Regardless, I would say in our case it has proven to be an accurate statement.
Spending days, weeks, and close to entire months in the hospital at a time let us know that Sonzee was truly not a fan of that environment. It can be argued that no one ever is, but in our case, it was so clear we vowed that no matter what, we would never let her die in the hospital. When she was a year and a half old we did our first family stay at Ryan House, which happens to partner with Hospice of the Valley, and that is the only place we considered outside of our home that we would let her go to die.
I had never imagined the specifics of her death, even in the life we lived, there is no way to possibly imagine what death might look like, but I did envision peace and comfort regardless of location. I had always assumed it would feel awkward to let her die in our house and then continue to live in the same space. I thought it could potentially feel...morbid. I had those heebie jeebie vibes over the thought of passing by a space that was filled with death. Then, the unimaginable became our reality, and it didn't seem so scary, it felt right.
The 11 days Sonzee spent on hospice were truly a gift despite the reality of the situation. We were able to make sure we did what we could in a short amount of time so there would be as few regrets as possible. I asked anyone who lived through a similar journey or who worked at hospice of the valley to tell me everything they did so I could ensure we did it. In the end, we did the best we could to ensure we could look back and not have too many sentences that could start with I wish.
Whether the decision for hospice is because it is in the best interest of quality of life and or to eliminate the suffering. Whether the decision is one that is made on behalf of a loved one or the loved one themselves makes that decision. Whether the decision is one made due to circumstance. Regardless of whatever the reason may be that a loved one ends up on hospice, it should be made very clear it is not giving up, it is not killing, and it is never a choice that is made out of anything other than immense love. It is the most difficult, painful, beautifully horrific experience that a family can encounter, and it should never be spoken about as anything other than that.