I have been circling back to that statement over the last month. Honestly, I have been wrestling with this very sentiment since Elise passed away 5 months ago.
I ran into a friend back in May at an event. We know each other but not very well. I can generally talk relatively easily to people about Elise. That is not always the case when I talk with special needs parents as I know that they have an intimate understanding of the pain I faced prior to Elise passing away and can relate far better than most now that she is gone.
He hit me with most of the usual questions. "How's Kelly doing?" "How has Abby been handling things?" "How are the two of you doing with each other?" Etc. Then I told him that I have just found myself in a very lost place regarding time. EVERY aspect of our lives revolved around the needs of Elise. Then suddenly, that was gone. There were no more feedings to be done, no more briefs to be changed, no more medicines to give, no more seizures to log, no more doctors appointments, no more teacher texts, no more "strangers" going in and out of our house helping to care for Elise, no more hospitals, no more..........anything. For a little while, life just stood still. What do you do when you suddenly have nothing but time on your hands?
So I said to him, "we have so much time on our hands, we don't know what to do with ourselves." Then he asked, "Is that a good thing?" That question stopped me dead in my tracks. I didn't really know how to answer or get away from that one, especially in a way that wouldn't cause some kind of break down in a public setting. Nobody wants that.
The way I suddenly got all of this free time in my life is that my daughter died. A HUGE hunk of my existence is gone. How do I celebrate this new found freedom when it cost me the life of my daughter to get it? Is it a good thing to have free time and be able to make choices to fill it? Absolutely! But, it has been impossible to reconcile being happy for the time when I look at what the cost has been. Not easy.
Back in April I took Abby to buy a new bike. It was something we talked about on our spring break trip in March. We decided that they carried the bike she wanted at home, so there was no need to buy it in another state and have to lug it around with us. I picked her up from school one day to take her to an appointment. When the appointment was over she asked "Can we go buy my bike?" There was nothing for us to hurry home for. Nobody was waiting on us. So, we went and bought the bike. When we were driving home she said, "that was kind of fun! We just decided to go to the store and did it. We didn't have a make a plan for another time. I really enjoyed that."
When I truly think about it, I realize that what she was saying is just completely foreign to most people. EVERY need and want was put behind whatever had to happen for Elise. So often Abby would request something like going to the store and it might be a week before we could make that happen. Spur of the moment just did not happen. She also understands that enjoying spur of the moment has come at a high cost. She also mentions to me how it feels weird to be happy about such "normal" tasks.
As a family, we are learning to enjoy this new found freedom little by little. "Is that a good thing?" I'm not so sure about that yet. I am learning to find that joy. But, the cost of that new found freedom is higher than I was prepared to pay.
