I have been thinking a lot lately about one of the many things that I learned in my journey of carrying a baby with a life limiting diagnosis to term -- how to search for joy in the uncertainty. We found out our baby boy Isaac had Trisomy 18 at a 16 week ultrasound. We knew straight away that we would carry and love Isaac here for as long as possible. I also knew that we were in for potentially a long stretch of uncertainty. While it was a very challenging time, there were many moments of joy. We lost Isaac in March and had a week of calm before the chaos of COVID-19 fully set in and the rest of the world joined us in the uncertainty. There are many lessons that I took from my pregnancy into this next phase.
Here are a few of the ways I was able to find peace and comfort in the midst of my uncertain pregnancy and in the worldwide pandemic that followed:
Taking it one day or one week at a time. As someone who loves to plan and set goals, this might have been one of the toughest parts for me! Forcing myself to focus on the short-term decisions, the ones that really needed to be made that day or that week was so helpful for me. It helped me keep present in the moment so that I could spend my time as I wanted to instead of spinning my wheels trying to play out every possible scenario. I had to take that lesson with me into this summer and fall. My tendency would be to try to figure out our childcare plans for the whole summer at the end of May, but that was very much not an option this summer. I was forced to take it one week at a time, which somehow was a lot less stress and it all worked out just fine. Now I'm trying to take this mentality into the school year as my oldest starts Kindergarten virtually. (Wish me luck!)
Creating comforting routines. When I was pregnant I spent a lot of time reading my Bible and searching for the passages that most resonated with me. Then I would practice my hand lettering and copy the scripture into my notebook. I probably wrote down every verse with the words hope or peace fifty times. This comforting activity gave me the opportunity to turn off my worrying brain a bit and activate a creative side instead. A routine that the kids and I put into place during quarantine was our morning circle time after breakfast. It added a nice consistency to our weekdays and was familiar for them from preschool/daycare.
Hold onto hope. You will never regret being hopeful. Allowing yourself room to hope doesn't make it harder if things don't go the way you hoped. Staying hope filled makes it so much easier to find the peace and joy. "Hope does not disappoint, because the love of God has been poured out into our hearts through the holy Spirit that has been given to us." Romans 5:5
Opening up to loved ones. The people that love you want to be there for you in your times of need. If you are in despair, reach out! They may not know the perfect thing to say, but they can listen to your concerns and it feels good to get them out! Call them up or send a slew of texts. Dealing with uncertainty is difficult and really letting your feelings out every once in awhile can make a big difference.
Finding groups of people who get it. Sometimes you need to talk to or hear from people who understand your experience because they have lived through it themselves. Fortunately in the time that we live in, it is so easy to find those people! Joining Facebook groups is usually my go to! Let me know if you need help finding groups that feel like a good fit.
Celebrating and making memories. We made a ton of wonderful memories during the months I was pregnant with Isaac, including lots of time feeling belly kicks and listening to his heart beating. We also went to Disney World! In times of uncertainty, it is so crucial to slow down and experience the moments of your life. Find ways to enjoy the present.