Ellie has an appointment with her cardiologist tomorrow (Wednesday). The appointment was originally scheduled for April, but postponed because of COVID-19. At that time, it was determined that the benefits of taking her in did not outweigh the risks. Now it is reversed.
This is a follow-up to her visit in October. We took her for a regular check-up that we expected to be simple, but the EEG and EKG showed a problem. We will find out more about that new problem at this week’s appointment. (You can read about the October visit here.)
Ben and I are equal parts curious and scared about Wednesday. On the one hand, we want to know what the future holds, but on the other, we like it here in our bubble of ignorance.
At the last appointment, Ellie’s doctor told us that we would not see any outward symptoms of this new sub aortic obstruction, so it has been easy to pretend that it does not exist. The past six months have included a lot of growth and change for our family, as well as huge leaps in development and awareness for Ellie.
The more we get to know Ellie, the harder it is for us to think about not having her around. It has always been scary, but it seems like it was easier when she was younger. For me, babies almost feel like obligations in the beginning and it’s not until they start to show their personalities and start to give some feedback that the real bonding begins.
I also can see now that I avoided getting too attached to her when she was born. There was so much uncertainty around her survival and it was easier that way in order to protect myself. I have always loved her, but I never let myself picture what her future would look like. Now that I really know her and she has woven into our life at home, I don’t know what I would do without her.
When I worked at the symphony, we used to ask “But what if the best thing happens?” when one or a group of us would get stuck in the rut of planning for the worst-case scenario. That question was a good way to redirect thinking but also to turn the problem into an opportunity.
I have been thinking through all of the worst-case scenarios that I see in front of Ellie since before she was born. When we got our appointment scheduled for this week, I continued right down the dark and frightening what-if path.
A few nights ago, Ben and I were cleaning the kitchen after we put the kids to bed and started talking about Ellie’s upcoming appointment. I was running through my Grand List of Things to Worry Over with him and heard “But what if the best thing happens?” come out of my mouth.
We have talked about her life so many times and we already know what will happen if the worst thing happens. There is no need for us to do that again for our benefit and, really, it’s just unfair to Ellie.
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