Joyful Healing

I remember clearly the night before leaving for our Disney trip three weeks ago thinking I was crazy. Crazy to take this big of a risk when a pandemic was still very much underway but hoping that this trip would be the first of many happier times to come and not a final memory my son would have of me. Perhaps that sounds extreme but when millions have died of COVID it is hard to not feel that way.

But I reminded myself we had to live, we had to find joy, that our son's childhood needed these core memories to balance the harder health days and the effects of growing up in a pandemic. And so we took the risk jumping out of our safe space and into the world - just hoping we’d come out without injury. Now 16 days since our return, all still healthy, I can call the trip a tremendous success!

We needed this trip even more than we realized before we left. It was an escape from our daily reality that for over two years has held more stress and anxiety then we could ever imagine.

It is still odd to think Disney - a very crowded and seemingly not covid safe place would be in fact where I found relief from the worry of covid. I did not appreciate or realize how freeing this trip would feel. For five days we did not have to weigh each activity, each family or friend visit, or each doctor appointment, constantly trying to determine what was worth the risk. We simply lived. We rode rides, we watched parades, we hugged Mickey and stayed up late to end each night with fireworks. We felt the Disney magic. Everywhere we turned if we looked we would find it. Yes, we wore masks and didn’t eat indoors but it didn’t matter. We went at our own pace - and we made memories together - memories that I know we will carry with us always.

There was nothing more healing than seeing the wonder on our son's face as he watched the fireworks, or sharing in shrieks of laughter as I took him on his first roller coaster. These are the days of parenthood and motherhood I dreamed to one day have and in spite of rare chronic diseases and a global pandemic we finally found them.

Coming home to a May Day party and then a few days later going to get our new puppy certainly rounded out some of our most joyful 10 days in literally years. And I was reminded over and over again how many feelings of hope joy brings with it. It has been so hard to feel hopeful in these very challenging days so to even feel just a bit of hope is now making it easier to face each new day and challenge that may await.

This is something I suppose I have always known as having hope is one of the rare disease community’s super powers. Without hope for better tomorrows and healthier futures it would be nearly impossible to endure the hard days, the medication trials, the failed therapies. I have learned long ago to balance the challenges with good days and joy but have never really connected that joy is what so often drives those feelings of hope making it that much more important to prioritize feeling it.

Life is still not easy, if anything this new surge has brought back more stress and anxiety, but I know for sure we must all keep creating opportunities for play and joy, we must fill our days with laughter and we must never stop looking for and feeling the magic that surrounds us.

“All I can tell you is once you see the magic in little things, you'll be fine, because magic knows exactly when that happens & it'll never leave you alone after that.” ~ Brian Andreas-