By Edgar, Daniel’s dad
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Being Daniel’s dad is an honor.
Every day I think about how blessed I am to have him as my son. Being the dad of a child with CdLS shows you how pure and simple life really is. Daniel lives fully present, in the moment, and that has changed how I see everything.
In 2022, I ran my first Chicago Marathon with the Foundation, so I know how challenging this race is. What it means to me, as Daniel’s dad, is that I am privileged to be challenged. Even when it’s hard, I have the option to take on this challenge. This year, running the marathon means running for those who don’t get to choose their challenge, who live inside one every single day, like my little Daniel. However, that is only half of the story.
What a CdLS warrior can teach you is that they find joy in the challenge.
They find their peace, their calm, their cool through every day’s struggle. Every person who has come in touch with a CdLS warrior knows this is the kind of attitude and resilience a person with CdLS carries. That is where I am finding life lessons. This is where I am challenged as an individual to get a grip of their attitude and resilience, so running a marathon is a small feat compared to what they go through and how they take on challenges they didn’t choose. And yet, the marathon becomes the perfect mirror.
It is unexpected, full of ups and downs, and at every mile you get to choose spiral into disappointment, or find joy in the challenge. And what a CdLS warrior teaches us is that they find joy in doctor’s visits, in therapies, in trying to communicate and being misunderstood, and at the end of it all they will still give you a smile, a hug, joy, and love. That is exactly what a CdLS warrior does every single day, and that is my motivation to run for Dan, to run for the foundation, to raise awareness not of the weaknesses but of the mighty strength that comes from a CdLS individual.
So I am not just “running for Dan.” I am finding strength by watching Daniel, by hearing stories from this community, from families at their peak of loving being a CdLS parent and finding this joy, and from those going through difficult moments in health or in relationships. We can all look to this community for an example of strength, resilience, and joy.
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