Bill and I love to travel. We honeymooned in France and Italy. Spent our first anniversary in Belize. Visited South Africa and soon decided to quit our jobs, sell everything and wander the world before having children. While on that journey, we spoke often of our hope to travel with our children. We wanted to expose them to different cultures, languages, their privilege… while also getting to experience the world and learn together as a family. And, naively, as one does before actually having children, we planned to begin when they were babies.

Gwendolyn’s SMA diagnosis at 5-months-old changed everything, including (less importantly) travel. She couldn’t fly in an airplane (breathing restrictions and also the need to be flat at all times), let alone the unpredictability or risks of being abroad for her level of medical care. But Miss G was a natural adventurer and we adapted, as you do as a parent, by taking her all over the West Coast, through the Redwoods and Napa, Las Vegas and Palm Springs, and on an incredible cross-country RV road trip. And she loved our vacations – we all did.

We just spent the last week in Costa Rica – the first international trip we have taken in 12 years. And here we are with babies. A decade later. But it doesn’t feel like starting over. Getting to do what we had always dreamt. I think from the outside it may. It feels significant for our family, certainly, but also like we are just trying to do our best when part of us is missing. Navigating uncharted waters. This trip has been good for us. Positive. Fun. Peaceful. Beautiful. An adventure, to be certain. But it has also been a magnifying glass over the chasm in our family… even to Eleanora, who, at just 4.5 years old, was the one to first articulate Gwendolyn’s absence on this journey. With tears, sadness, longing, and honesty.

The death of a loved one changes the course of a family. Reshapes lives. I want so much to say the cliché that I am/we are living “bigger” because no day should be “wasted”. Believe me, I really, really value my life and appreciate my family and our health to no end. But clichés never hold true for long because the real truth is we are capable of multitudes. We are complex, contradictory, evolving beings. And I feel more at peace embracing everything as it comes. We can be deeply grateful and still feel intense longing. To feel sorrow does not negate joy. They are often lived simultaneously. (Even for a 4-year-old having the time of her life.) We choose to see the good every single day. And we still wish Gwendolyn were here with us.

Part of me feels…, I think, ashamed to share this side of our trip. So much social interaction, highlighted with the social media filter, demands triumph after, well, any challenge. Whether it’s a sporting event or an injury or the death of your child. There’s a general reverberation to live life with aplomb or you are taking it for granted. A pity party, even, if you dare to feel, most assuredly, appropriate multitudes of feelings. I am certain I have even made the unintentional mistake of projecting this.

In Gwendolyn’s life we shared so openly, so candidly, and instead of stagnating in pity, the honesty was actually freeing and allowed us to stretch our wings farther than our life was “expected” post-diagnosis. And, Lord knows, in an utterly uncharted territory, I craved community and authenticity from others and, in that honesty, met an astounding group of people all over the world who lifted us over and over again and we, in turn, lifted them. I hope in sharing once again, others grieving or sorting through the tough stuff that can’t simply be filtered away, will feel less alone. Pain, loss, and struggle are some of the darkest roads we must journey — and they also require courage and fierceness.

After Eleanora bravely voiced what was on all of our hearts, we found ways to express our missing tangibly. We talked, of course, but actually doing something, I’ve found, helps move the grief. We wrote Gwendolyn’s name in the sand, we collected shells and found a heart-shaped coral to take to her grave site, we looked for her in the sunsets each night and in the butterflies that found us. And, on the last night, I took out a special purple stone that a dear friend gave me for this exact purpose. I brought it with me from home, just in case it felt appropriate, as a symbol of Gwendolyn to leave all the places we go. A literal reminder that we always carry her with us and she will always be part of our adventures. Eleanora’s face brightened as I explained all of this and she loved the idea, adding a special shell from her collection to go with it. With pride and confidence, she decided exactly where we should leave our little love offering. Watching her, the waters suddenly felt a little calmer and, as I soaked in what this trip brought out in us all, I could more clearly see what a beautifully healthy way our little family is helping each other grieve and heal and grow. Because of Gwendolyn.