When we traveled to Georgia to try to find the answer to Bridgetitis I remember hitting Connecticut when it hit me that we might not want to know. With another 15 hours in the car, instead of being filled with anticipation I was starting to doubt if this was the right course of action.
Did we really want to know the answer?
Logically, we did need to know. We needed to know what Bridget has so we would know how best to provide for her. Yet in the back of my mind a question was there, what if you found out and the news was your worse nightmare? I remember sending a desperate text:
What if I’m told she will die before she is 15? That we get the answer and are told she has XYZ so enjoy your time however short it may be.
Fast-forwarding five months or so, the doctor called with the news. Honestly I was hesitant. I was worried beyond belief. I didn’t sleep the night before our appointment.
Being the guilt-ridden Irish Catholic that I am, I immediately started the barter process with God. I can handle X but not Y. I will do A if you give me C. Then I imagined everything I would do to make Bridget’s short life as enjoyable as possible.
Basically, I made up a bucket list for however many years she might have left.
How sick is that? I hadn’t gotten any news yet and already I was planning the bucket list. Not the funeral (I’m not that sick) but how I would live out the remaining time we might have left.
- I would work less and play more
- I would “sit ere” when asked instead of doing the dishes
- I would take long walks, pushing her chair as long as she was willing to ride
- I would never, ever, like ever brush her hair again
- I would travel to each of the 50 States with her so she could see how big this country really is and then we would venture to the world.
- I would let her have cupcakes for breakfast
- I would let Abby have a skip day for a Bridget day
- I would let Bridget have more “eep ova” in Abby’s room. In a tent, because that is how a true sleep over happens.
- I would take her to the pool every day
- I would hold her in my arms for as long as she let me
- I would….
It’s a lame list, I admit. No trips to Disney (actually that could be checked off), not spending millions of dollars we do not have and nothing really material. It is the experience, that hug or that first glimpse of a waterfall. Just time, precious time would be on our bucket list.
After I got the news that they found our answer (PACS1) and told that Bridget should have a typical lifespan, that there were no life-threatening issues related to the PACS1 gene, I breathed a sigh of (huge) relief and moved on to finding out all I could about PACS1.
Except I forgot about the bucket list, until I started bargaining with God last week to please make my child well.
Today is the day for Resolutions. To live this year better than the last. To exercise more, eat less, live healthy and be a better person. To stop being negative, to not gossip, to be an example of how you want your child to live their life.
I know I will break at least one of those (probably by the end of the day). Instead, in 2015 I am determined to have one goal: To live the Bucket List every day.
I will not let either child have cupcakes for breakfast (every day) or spend their life in the pool. I will embody the bucket list and make time matter. I will refuse let Bridget’s (or our) life defined by work, syndromes or obligations. I will live this next year like it is our last. Like every moment is precious.
That is my resolution for 2015.