Life in technicolor: 10 years later
This week marks the 10-year anniversary of our family’s largest asteroid: Miguel booking Hamilton and Adelaide being diagnosed with epilepsy in the same week. Ten years of a life I never could have predicted. Ten years of life that has looked nothing like the life I led just one week earlier. Thank goodness I didn’t understand the ramifications at the time.
Occasionally, I will allow myself to wonder what life would have looked like had Adelaide been born healthy, or if Miguel never booked Hamilton. I used to think a lot more about healthy Adelaide. What activities would she have done? Would she have been as feisty as the Adelaide I knew? As opinionated? However, since getting her genetic diagnosis, I have been able to find some peace in knowing that she was who she was and there never could have been an alternate version of her.
In lieu of imagining a healthy Adelaide, I now think about how I would be different had I not had a medically complex child. It is quite the task considering the last ten years have been nearly as formative to my growth as my first ten years. The way I view the world, how I move through my day, what I prioritize, the way I confront problems or celebrate triumphs is all colored by Adelaide. And as painful as it has been, I know I am a better human for all of it.
The difference between my perspective of the world ten years ago and today is akin to Dorothy’s stepping into technicolor Munchkin Land from sepia-toned Kansas. If given the choice, I think most people would choose to see the world in full-spectrum color over muted browns. However, what I have learned is that those colors are earned by navigating and surviving a full-spectrum life.
Actually, earned may be a little generous. Sometimes the colors feel more like a consolation prize. “Sorry you have to deal with these super crappy circumstances, but in return you are going to gain a deeper knowledge of the world around you and look at all the pretty colors! Did I mention there are no takesy backseys?”
I couldn’t tell you the number of days where I’ve wished for a muted environment where my biggest challenge is a mean, old neighbor fighting me about my dog. Bring it, Almira Gulch. But alas, no matter how many times Sriracha escapes and the neighbors text me that she is in their yard, no one seems interested in taking her away. I joke, in Tabasco’s absence, Sriracha is growing on me…albeit slowly, very slowly.
Basically, without Adelaide, I would be a much crappier person with a narrower view of the world and, as a result, less empathy. If not for Adelaide needing me at home, I would also probably still be working in hospitality or events in some capacity, consulting maybe? And I would guess less fulfilled by my work. Or, more likely, my save-the-world complex would have taken over, and I would have transferred my skill set to the non-profit world.
And what if Miguel had gotten thiiis close to Hamilton, but missed out the same way he did Jersey Boys and In the Heights? We certainly wouldn’t be as financially comfortable, nor have the platform to bring as much awareness to epilepsy, the undiagnosed, or grief. Could I have even gotten a book published without Hamilton attached to our family name?
Interestingly, Miguel’s life might look similar to today with or without Hamilton. Ten years ago, he was working on building his business of teaching baseball to little kids. It is entirely plausible that dream could have grown into starting a batting cage and training facility.
The way life can diverge and fold back onto itself is all at once bizarre and fascinating. I like to think that in each of our varied timelines Anessa always joins our family, and that Jackson remains a kind and intuitive kid. That my marriage remains strong and I find ways to effect positive change. But for now, this is the only life I have access to, and in this timeline, my life will always be affected by events set in motion during one unassuming week, ten very long years ago.
ID: Kelly and Miguel standing under a white gazebo, with the sun setting over a lake behind them. Miguel is wearing a pink floral shirt with a blue polka-dot tie, and Kelly is in a pink floral dress. They are both smiling at the camera.
P.S. Don’t miss the adorable bonues photo of Adelaide below, BUT FIRST - I am once again asking for donations for the Undiagnosed Diseases Network Foundation as this small but mighty organization continues to grow and build. When you are living undiagnosed it can be hard to find community. However, while the symptoms vary widely, the journeys overlap. Through the UDNF, patients and their families are able to connect with others who not only see but understand their experiences. This validation has dramatically changed lives. The UDNF made that happen.
Right now, we have momentum. The UDNF has elevated the voices of undiagnosed patients to congressional leaders, and we reached a major milestone – just last month a resolution naming April as Undiagnosed Month was introduced in Congress. This is a designation that will perennially raise awareness and keep this community in the public conversation.
Validation and awareness were the first step - one we accomplished last month on Capitol Hill. Funding is the second. Government funding for the Undiagnosed Diseases Network (UDN) will likely be decided within the next six months, giving us only a few months to secure the UDN’s position in the next budget. We proved we could impact federal policy, now help us ensure that the UDN and the UDNF’s programming and research remains a priority until the diagnostic odyssey is ended for all.
I’m asking for your help to raise $5,000 for the UDNF, not from you alone, but through you. You have a network of colleagues, neighbors, family, and others. A few conversations, a forwarded email, a personal note. These things move people in ways that mass appeals never do.
This community exists because people like you chose to show up for it. You can continue our policy work and help us connect and support families so that they aren’t navigating this in isolation.
Bonus photo of Adelaide from 10 years ago because she will forever be me why <3
