To Infinity and Beyond
With the world living more normally and covid numbers again on the rise the medically vulnerable community is left with little guidance on how to move forward. As someone very much in this cohort of people I am left weighing my options constantly never sure of what is worth risking and what isn’t. The world feels like a minefield -each time entering hoping that I don't return with COVID.
It reminds me of the early days of my own diagnosis - afraid to leave my safe bubble and trying to asses what activity could possibly be worth starting a cascade of reactions. At the time the main risks I took were attending work meetings and events and always feeling horrible after. And all for what - work? Of course work is important but I realized in time that I was not pushing myself to do other things outside my comfort zone- things that made me much happier than work.
I realized I didn’t want to only recover from doing meetings. I wanted my reaction to be worth it, to be for something I loved doing and that brought me joy. And that is how I ended up taking the leap of faith to fly again, go to Disney and spend days feeling alive. The recovery after had never felt more worth it.
A month after our first Disney trip in the Fall of 2019, we landed inpatient with our son for a week over Thanksgiving. By day four my husband and I agreed to another trip knowing that we had to balance our son’s pain and hospital stay with something joyful for him. That this trauma would never leave him but that we can’t stop pushing ourselves to live in the good moments too.
Booking the trip I had no idea a pandemic would begin a few months later and that this trip would be moved four times over the last two years. We are now 17 days out from our rescheduled Disney trip. The excited anticipation and planning has carried us all through the last two months of my surgery recovery and the loss of Bitsy. It has been something to finally look forward to which we needed so badly. And it will allow us to escape life even just for a few days and relax and play all day together.
Of course the sea of texts of new positive cases coming through my phone this week and the daily positivity rate climbing as each day goes by is certainly increasing my stress level. Are we really going have to delay again?
But as I think about the last two years and the risks I’ve taken-almost all are for medical reasons - two hospital stays -recovery from covid vaccines and infusions. Yes, all necessary but none of these things filled me with joy.
On Monday morning this week the school nurse called and our son had a small medical issue and it was clear we needed to go to NYC to see his specialist. Without hesitation we went to the hospital knowing this was worth the risk of a covid exposure and that we had no other choice. Thankfully, he is fine and recovered quickly but this can’t be the only memories we have from this year. It can’t be that hospital trips are the only risks we take for another two years.
And yet it is scary to enter a world that feels unsafe. To expose us to a virus that is unpredictable at best and to risk any of our lives. I am considered vulnerable but how much longer does that mean I must remain locked in? How do we find our way back into the living? I know it will be unsettling and overwhelming at first when we are near more people than we have been in two years but I also know it is necessary to push ourselves to re-enter life. We will do it our way in masks and staying distant and being outside but I know we have to try.
So in 17 days we will take our leap as we board a plane arriving to a magical land where happy adventures with pirates and Mickey await, where we can travel to infinity and beyond and where we can finally make our shared dreams come true.
