Our Season

The last two weeks have been only the best kind of whirlwind, with a visit from my brother and sister in law and then a visit the next weekend from my grandma, final performances and last days of school wrapping up. Our out of town guests made these moments even more memorable and special and I have felt endless gratitude for this time together.

There was so much laughter and music and playing amid the chaos. I paused often during this time to be mindful of the noises flowing through our home and I would smile and feel a wholeness in my heart knowing these are the moments we live for. It has been over 3 years since we’ve hosted a family gathering indoors and while it felt very scary we also knew how important it was. Yes, we still mask indoors in public, and no this would likely not have happened at the peak of flu season. It is easy for most to say the pandemic is over and COVID doesn’t matter but when you have rare diseases and are immune compromised it is not so easy to throw caution to the wind. But we also know that COVID is not going away so when levels are low you have to seize the opportunities we would never be able to have during the winter.

I would be lying if I said I have not worried that I had COVID multiple times in the last week following our large family gathering. But even with that stress, the time with relatives and friends we have started to take part in again has certainly been healing in so many other ways.

If there is anything we have learned from the pandemic it is the need to feel connected. We all crave connection - being close to each other and feeling shared love and joy in person together. Those early weeks and months were lonely and scary when it was actually dangerous to see others.

Winter has for us now become an extremely isolating and stressful time in ways we could never have anticipated. As a rare disease patient, I am used to “missing out,” I am even used to feeling isolated at times when it just isn’t safe for me to join in. That lack of human contact and in person connection was always hard. Since COVID we had to go so far backwards and most of the time we had to stay isolated or distanced thus preventing a more meaningful connection to happen.

So we’ve pushed ourselves yet again, with guidance from our medical team on how to take our next baby steps towards opening up a bit more. I am trying my best to focus on what this has meant - on the memories we now have and the time spent with family we would otherwise not have had. We waited all winter for summer hoping it would be what it has already been so far, even in just a short time, a time to re-connect, a time to be in person with family and friends, and the right time to take a few more risks when the rewards are undeniably life improving.

So as the warm air and longer days arrive we are all finding our new summer way. There is a lightness to life that only summer can bring- when our son’s days are filled with laughter and play at camp and our evenings and weekends have more space for pool days and nights out with friends. Of course we still do it our way but we are indeed finding ways to feel connected - to feel a part of the world again and what a gift this is. I am soaking up each moment and staying mindful and present and in gratitude for the hopeful joy filling our days.

Summer is our season and we are so happy it has arrived.