Since Eve’s diagnosis, I have been reading, learning, researching and connecting with others on the same journey. In meeting other families with Aicardi-Goutieres syndrome, I have learned the range of experiences and outcomes that exists between the variations of this syndrome. Some individuals have a milder case and can live into adulthood while others are more severe and many have lost their children young. There is a sense of urgency for research and cure, but many worry that it may not come within their children’s lifetime. It’s easy to slip into a chronic sadness at the unfairness of it all.
I have to make a conscious effort to focus on each day as it comes. If I think too far into the future, I fall apart. If I imagine all the possibilities, I get anxious. But if I stay present in the here and now, I can find contentment, joy and even gratitude. In some ways, this life as we live it today, is the way life is supposed to be lived. Savoring each moment, feeling every feeling and allowing the mundane moments to become extraordinary in their own way. The sadness is still there, but it serves as a powerful contrast to the joy that also exists.
I have thought a lot about quality of life as we navigate the future with Eve. And that focus is changing everything we do from school decisions, to therapies and how we spend our time. The question I keep asking with each decision is how any activity adds to Eve’s quality of life. There is an urgency to get to the right doctors and right medications but that only serves as a source of hope. There are people dedicating their life researching AGS and other syndromes like it. They are brilliant, capable and compassionate individuals who offer us great hope that would improve Eve’s quality of life.
Ultimately we don’t know the number of our days, only God does. No statistic can tell us within certainty the outcome for Eve. So we choose to live, even as the sadness comes, we choose to live. And keep searching for the moments that will carry us through the sadness.